Religion, , Bioethics, and the Law in End-of-life Care: South Asian Religious Adherent Perspectives

by

Sean Hillman

A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Graduate Departments of Department for the Study of Religion, Joint Centre for Bioethics, Centre for South Asian Studies University of Toronto

© Copyright by Sean Hillman (2019)

Religion, Medicine, Bioethics, and the Law in End-of-life Care: South Asian Religious Adherent Perspectives (2019) Sean Hillman Department for the Study of Religion, Joint Centre for Bioethics, Centre for South Asian Studies University of Toronto

ABSTRACT

This study investigates end-of-life care issues in contemporary India from the perspectives of Indian and Tibetan religious adherents, through the lenses of religious studies, bioethics and the law. The need comes from a paucity in bioethics studies related to the ancient

Indic religious traditions of , and , and from some studies ignoring the non-theistic Indic traditions altogether. Additionally, direct requests came from a Jain community organization for bioethical approaches to an end-of-life ritual and immobilization practice (sallekhanā) as it continues to be legally contested. Medical approaches to decision-making can assist with the dual purposes of protecting vulnerable Jains from coercion and also in satisfying detractors.

A major research question was whether religious views impact end-of-life decision- making of patients, families and health care professionals. Although specifically answered in the final chapter, medical decision-making pervades the conversations and analysis throughout, and it is proposed that decision-making moments that involve patients and/or families along with health care providers create micro-level transient neocultures, stemming from Ortiz’s transculturation theory. Three core chapters address: attempts to block disclosure of bad news in sharing of sensitive medical information; ritual fasting and immobilization at the end of life; and exposure to and attitudes towards end-of-life care models including management, and assistance in dying. Primarily ethnographic, the study also uses textual, legal and media analyses.

ii Field work lasted for six months over 2014-2015 and research took place at four field- sites in India: , Dharamsala and Jaipur in North India, and Cochin in . In-person interviews were conducted with fifty informants belonging to various religious traditions, mainly from the major ancient Indic religions, one medieval Indian religion and the monotheistic

Semitic religions for added perspectives. Among the participants were biomedical and traditional healthcare providers, all physicians save one medical student and two nurses.

This study is an advocacy anthropology project with hopes that it proves helpful in India and other jurisdictions where South Asian religious adherents receive end-of-life care so that culturally safe care can be better provided. As such, the study ends with a number of practical findings, recommendations and suggestions.

iii Acknowledgements

First and foremost I want to thank all of the study participants in India and Canada for kindly spending time with me to discuss what at times were sensitive topics, for helping me find other informants and also for their interest in seeing the results of the study. Our conversations were so inspiring, and each of you will always have a special place in my . I will never forget you and hope to stay in touch.

Next I give my deep and enduring thanks to my doctoral Supervisor Prof. Frances

Garrett, who has been so supportive of my academic pursuits through two graduate degrees and helped me transition from monastic colleges back to the academy. It is almost impossible to express the ways in which Prof. Garrett has helped me, but she is a brilliant scholar, master educator, always timely, and so kind. I am forever indebted to you.

Deep thanks to the rest of my committee-members, Prof. Arti Dhand and especially Prof.

Christine Jamieson for joining so late in the game after one of my committee-members suddenly and unexpectedly left. Your support and feedback on my project have been indispensible. Much thanks also to my external reader, Prof. Christy Simpson (Head of the Department of Bioethics at

Dalhousie), who is an absolute delight and provided such important feedback for the project which will greatly assist in the production of a book version of the study.

The Department for the Study of Religion at the University of Toronto has some real gems in the office, and I am endeared to all of you. Fereshteh Hashemi (Graduate

Administrator), you never tire of our constant questions and visiting you in your office is a trip to an oasis amidst the challenges of academic life. I really don’t know how I would have gotten through two degrees without you…you are truly amazing. Marilyn Colaço (Undergraduate

Assistant, & Assistant to the Chair), who helps manage instructor and teaching assistant

iv positions, I have always enjoyed our visits and thank you for all of your help over the years. And

Irene Kao (Business Officer), our chats are one of my favourite reasons to visit the department. I hope to stay in touch and will never forget you.

I am greatly thankful also to the University of Toronto for the financial awards and grants which were so helpful over the many years of my graduate studies.

Dr. Shugan Jain, Director of the International School for Jain Studies in India, and his team are responsible for my formal launch into Jain Studies almost a decade ago, which unalterably changed my personal and academic life. Thank you so much for your ongoing encouragement, and for financial support over two visits to India.

Thanks to all of the staff and friends at the guest-houses we stayed in during field-work, especially Robin and his team at New India Guest House in Jaipur (where I stayed the longest), the wonderful staff at Anoop Hotel in Delhi (my home-base!), and everyone at the Green Hotel in Dharamsala.

I am so very grateful to Dr. Michael Szego, Director of the Centre for Clinical Ethics, formerly my fellowship site supervisor and more recently my boss of several years. Dr. Szego has always been supportive of my doctoral pursuits, and even though our team is stretched he allowed me time to start part-time so I would have dedicated days to dissertate when I started my new career as a clinical ethicist.

I consider Dr. Dave Langlois, my former co-fellow and now co-worker, as one of my dearest friends and I don’t know what I would have done without him during our fellowship, through the writing phase and towards the finish line. A Harvard philosopher, I joke that Dave is a brain in a plaid-shirt! Having been through all of this yourself, I always appreciated your

v reality-checks, and also all of the ideas you had for some philosophical points. And all of the singing and jokes…my ribs often hurt when we are together.

To my fellow ethicists and the fellows at the Centre for Clinical Ethics, I am so honoured to be on a team with all of you who each have such wisdom, experience and a penchant for collaboration that I constantly feel supported even when we don't see each other for some time.

A special mention to Steve Abdool, a.k.a. “The Legend,” who was the first living bioethicist I ever met and worked with, and who inspired and encouraged me to pursue clinical ethics.

My co-workers at Lakeridge Health, especially the many Social Workers that I work so closely with, were so warmly embracing of me when I arrived on the scene and every day I am in awe of the work that you do to support patients, families and your teams. A special thank you to

Leslie Motz, VP of Clinical Services and Chief Nursing Executive and to whom I report, for your ongoing support and warmth.

Although it has been years since I have been at the bedside, after twenty years there I am lucky to have so many friends and co-workers at St. Michael’s Hospital that were so supportive and curious with my academic pursuits, and your love and interest have always meant so much to me. I often miss our time together on the various units, and especially taking care of patients with nurses at the bedside, more recently in the trauma-neurosurgical . Thank you for being patient with me when I had thousands of pages of readings to do on the night-shift!

Thanks to all of my family, my siblings Joanna and Evan, and all of my cousins, for always being supportive. To my parents Eve and Harold thank you for all of your love, counsel and cheerleading over my many, many, many years in the academy. They know that I have been in various educational settings for most of my life, and if anyone appreciates what an accomplishment it is to finally defend my doctorate, it is them. I feel very fortunate to have

vi incredible in-laws, Elizabeth MacLeod and Bruce Blight, who I absolutely adore and am able to spend an enormous amount of time with, at the cottage, at their home, and travelling. I even wrote some chapters alone at both the cottage and their home! I cannot thank you enough for your love, patience and practical and emotional support over the last decade. A special mention to my late paternal grandmother, Grace Hillman (a.k.a. “Gigi”), for her generous gift that helped support my field-work. You were always so kind to me, and are always remembered and missed.

Big thanks to my friends, such as Bob and Julia, and my band-mates (Mack, Mike, Mark,

Meghan and Kalie) for all of the love and music! A very special thanks to my best friend Dr.

Ashley Curtis. We were in bands together for many years while also working on advanced degrees at the same time. We co-miserated, we strategized, we played and we danced.

Inexpressible appreciation to my Guru, His Holiness the of Tibet. You are my refuge, my protector, my preceptor, and my constant spiritual source of support and guidance and I pray that You remain until the end of cyclic existence for the sake of beings.

And finally, there is the love of my life, and mother of our soon-to-arrive child,

Alexandra MacLeod Blight. You are the light of my life and my constant inspiration. A Nurse

Practitioner in Indigenous health, you enter into some of the most challenging and complex cases and come out still unflinchingly wanting to help others. I hope we write a book in a cabin by a lake! I always say you have natural compassion, but for me it is work to have such altruism.

Thank you for always supporting me, challenging me, helping me stay healthy and your enduring patience over the last eleven years of academic, healthcare and prison work. I cannot fully express my love and devotion to you, and every day is an adventure and I hope we constantly find each other…forever.

vii Table of Contents

Abstract………………………………………………………………………………...... ii Acknowledgements……………………………………………………………………….…...... iv List of Newspaper Articles……………………………………………………………….……..xi Glossary of Acronyms/Abbreviations…………….………..………………….……………...xiii List of Appendices………………………………………………………………….…….……..xv

Preface: The Researcher’s Position………………………………………………………….....xvi

Chapter 1: Introduction End-of-life Care Issues Among Select South Asian Religious Adherents Through Ethnography, Clinical Ethics, and Legal/Textual Analyses Preamble………………...……………………………………………………….………..1 State of the Field and Study Need………………………………………………...... ……16 Canadian Studies…………………………………………………………...……16 Bioethics of Indic Religions…………………………………………………..….21 Contributions to Scholarship and Healthcare……………………………………………25 The Study Context and Methodology………………………………………………………..33 Brief Introduction to the Ancient Indic Religious Traditions…………………………....43 Study Outline………………………………………………………………………...…..47

Chapter 2: “Shall We Tell the Patient?” Blocking Bad News in End-of-life and Health Information Sharing Introduction Summary………………………………………………………………..………..51 Background……………………………………………………………………....52 Part 1: Ethnographic Data: Indian and Tibetan Voices……………………………………...…..60 Withholding difficult healthcare information: terminal diagnoses, imminent prognoses…………………..………….…………….………………………...…67 Receiving difficult healthcare information: perceived detriments to patients……………………………………………………………….…………..68 Receiving difficult healthcare information: perceived benefits to patients ……………...………………………………………………………………….....71 Receiving difficult healthcare information: perceived detriments to families……………………………………………………………………...…....73 Part 2: Analysis The Legal Stance on Autonomy and Consent in India………………………...…74 Withholding Bad News in Healthcare among Non-Asian Cultural and Religious groups…………………………………………………………………………....76 Medical Studies on Sharing of Sensitive Healthcare Information…………….....79

viii Intersections of Indic and non-Indic Theory Foucault’s use of “avowal”……………………………………………....86 Indic …………………………………………………………..….87 Mol’s use of “co-production”………………………………………..…..87 Indic interdependence…………………………………………………....88 North American Regulatory Documents that Address Sharing of Sensitive Healthcare Information……………………………………………………….....88 Conclusion and Informant-driven Strategies for Management of Healthcare Information Sharing……………………………………………………………………………..…….91

Chapter 3: “Is it ?” Ritualized and Medicalized End-of-life Practices: South Asian Ritual Practices of Fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards Introduction………………………………………………..………………………..……96 Part 1: Jain Voluntary Fasting and Immobilization at the End-of-Life: sallekhanā..…………...98 a) Informant Views of sallekhanā…………………………………………….…101 b) Key Contemporary Moments for sallekhanā: some public discourse and legal milestones………………………………………………..………………….…..108 c) Reframing sallekhanā as a form of Voluntary Stoppage of Eating and Drinking (VSED) to Protect the Vulnerable and Satisfy Critics 1. Safeguards and Oversight………………………………………..…..119 Voluntariness……………...………………………………..…..121 Capacity……………...………………………………..………..125 Sufficient Information...……………………….………………..129 Case Reviews………...………………………..………………..130 2. Foregoing life-sustaining measures………………...... ………..132 3. Hospice Palliative Care Shift in healthcare focus from curing to comfort...……………..140 Pain Management...………………………………………….....149 4. The Rule of Double-Effect (RDE) ...………………..…………….....160 The second RDE condition that the good effect and not the evil effect be intended...………………………...………………...... 161 Part 2: Buddhist Voluntary Fasting and Immobilization at the End-of-Life: tukdam….165 Expert and Informant Views on tukdam………………………………….....….167 Buddhist Discipline Texts on the Distinction Between Active Killing versus Withdrawal of Medical Treatment…………………………...... ……………….……173 Part 3 Comparing sallekhanā and tukdam as social phenomena……………………………....180 Measurability of Unusual Physical Signs…...………………………………….180 Permission and Publicity…...………………………….……………………….183 Terminology and Jainism as an Indigenous Minority Religious Tradition ……………………………………………………………………………….….187 Conclusion………………………………………………..……………………….……190

ix Chapter 4: “I have this pain…” End-of-life Models of Care: South Asian Adherent Perspectives on Pain Management, Hospice Palliative Care and Medical Assistance in Dying (MAiD) Introduction………………………………………………..……………………………192 Pain Management…………………...……………………..……………………………193 Informant Perspectives on Pain Management Interviews and Analysis…………...……………………………………196 Summary…………...……………………………………………...……219 Hospice Palliative Care Preamble…………...……………………………………………………...……221 Informant Perspectives on Hospice Palliative Care Interviews and Analysis…………………………………………...……224 Summary…………………………………...………………………...…233 Medical Assistance in Dying (MAiD): South Asian Religious Views Preamble………………………………...………………………...... ……233 Informant Perspectives on MAiD Interviews and Analysis ………………………………...... ……237 Summary…………………………………..………...... ……244 Collateral perspectives on MAiD………………….………...... ……245 Hinduism………………….………...... ……245 Jainism…………………….………...... …252 Buddhism………………….………...... …255 Summary and MAiD Alternatives……..……………………………..……..266 Conclusion……..………………………………………………………………………….……..269

Chapter 5: Conclusion, “Mostly a Collaboration.” Highlights on End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents, and General Summary of Findings and Recommendations Part 1: Highlights of Findings on End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents End-of-life Decision-making………….....………...……………………………271 Religion and End-of-life Decision-making………….....……………..……...…273 Part 2: General Summary of Findings and Recommendations………………………….…...275 Part 3: Final Thoughts……………………………………………………..…………...... …...285 References………………………………………………………………………………..…….287

x List of Newspaper Articles

Woman kills self in hospital as mom dies Sanjay Yadav, Times of India, Nov. 9, 2014. Box #1………………………………………………………………………………..…..59 Box #1a…………………………………………………………………………………..60

Rajasthan high court bans Jain ritual of fasting unto death Lalit Sharma, Hindustan Times Aug 10, 2015. Box #2………………………………………………………………………………..…111 Box #2a…………………………………………………………………………………112 Box #2b…..…………………………………………………………………………..…113

India Top Court Lifts Ban on Jains' Santhara Death Fast BBC News, 31 August 2015. Box #3…………………………………………………………..………………………117

In historic verdict, SC okays passive Asks HC To Give Go-Ahead After Getting Consent & Expert Opinion. Dhananjay Mahapatra, The Times Of India, . Mar 8, 2011. Box #4…………………………………………………………..………………………135 Box #4a…………………………………………………………..…………………..…136 Box #4b…………………………………………………………..…………………..…137

Santhara ruling: Woman dies after week-long fast, Jain leaders cry foul. Milind Ghatwai, , August 13, 2015. Box #5…………………………………………………………..………………………183 Box #5a…………………………………………………………..………………..……184

Death of minor girl after 68-day fast sparks outcry Khaleej Times, 10 Oct 2016, Reuters. Box #6……………………………………………………..……..………………..……185 Box #6a…………………………………………………..……..………………..…..…186

Buddhist enters trance in bid to 'meditate himself to death'… and tells followers he will spontaneously combust on Thursday. Ted Thornhill, Mail Online, 10 September 2014. Box #7……………………………………………………..……..………………..……188

Passing of NDPS Act Amendment Bill will make morphine more accessible Maya, C. , Feb. 23 2014 Box #8……………………………………………………..……………..………..……205 Box #8a.……………………………………………………………..…..….……..……206 Box #8b.…………………………………………………………..……..….……..……207

xi In southern India, relatives sometimes quietly kill their elders. Mark Magnier, Los Angeles Times, January 15, 2013. Box #9.…………………………………………………..……………..….……....……248 Box #9a...………………………………………………..……..………….……....……249 Box #9b………………………………………………..……..….……………...... ……250 Box #9c...………………………………………………..……..………….……....……251

After passive euthanasia, SC will now examine ‘living will’ Dhananjay Mahapatra, The Times of India, Oct 11, 2017. Box #10.…………………………………………………..……..………….……..……252 Box #10a.………………………………………………..……………..….……………253 Box #10b.………………………………………………..……..………….……………254 Box #10c.………………………………………………..……..….……………………255

xii Glossary of Acronyms/Abbreviations

ACP Advance Care Planning AIDS Acquired Immune Deficiency Syndrome AMA American Medical Association BUC Buccal CBC Canadian Broadcasting Corporation CCB Consent and Capacity Board CMA Canadian Medical Association CNO College of Nurses of Ontario CNS Central Nervous System CPR Cardio-pulmonary Resuscitation CPSO College of Physicians and Surgeons of Ontario CPST Continuous Palliative Sedation Therapy CTA Central Tibetan Administration DSM Discharge Support Meeting EOL End-of-life GI Gastro-intestinal G-tube Gastrostomy tube GTA Greater Toronto Area HCCA Health Care Consent Act HCPs Healthcare Professional(s)/Providers HIV Human Immunodeficiency Virus IAST International Alphabet of Transliteration ICU Intensive Care Unit ID Intradermal IM Intramuscular (injection) ISJS International School for Jain Studies IV Intravenous JAMA Journal of the American Medical Association J-tube Jejunostomy LGBTQ2AI Lesbian, Gay, Bisexual, Transgender, Queer, Two-spirited, Asexual, Intersexual LS Life-Sustaining LTWA Library of Tibetan Works and Archives MAiD Medical Assistance in Dying MI Myocardial Infarction MRP Most Responsible Provider NDD Non-disclosure of Diagnosis NG Naso-gastric NLU National Law University OG Oral-gastric OHRC Ontario Human Rights Commission PAD Physician Assisted Dying PEACH Palliative Education and Care for the Homeless PHI Personal Health Information PHIPA Personal Health Information Privacy Act

xiii PIL Public Interest Litigation PVS Permanently Vegetative State RDE Rule of Double-Effect REB Research Ethics Board RN Registered Nurse SCI Spinal-Cord Injury SDM(s) Substitute Decision-Maker(s) SDMH Santokba Durlabhji Memorial Hospital SL Sublingual SN Samyutta Nikaya Sub-Q Subcutaneous TPN Total Parenteral Nutrition VSA Vital Signs Absent VSED Voluntary Stoppage of Eating and Drinking

xiv List of Appendices

Appendix A………………………………………………………………………………….....305 Relevant Sections from Questionnaire and Select Questions from Open Interview

Appendix B………………………………………………………………………………….…315 Statistics (graphs, charts and analysis)

Appendix C…………………………………………………………………….…………....…360 Full Summary of Findings on Healthcare and End-of-life Decision-making among certain Indian and Tibetan Religious Adherents

Appendix D………………………………………………………………..………………...…478 Defining Key Terms: Informant Perspectives

Appendix E……………………………………………………...………..…………...... …525 List of Findings and Recommendations

xv Preface: The Researcher’s Position

In following the anthropological imperative to reveal position to locate potential sources of bias in the data, within the dissertation I will share that my approach tends towards social constructivism but here will also briefly share relevant aspects of my training and background, as well as my relationships with the various communities involved in my study. I am a doctoral candidate in my seventh year, with my dissertation writing commencing in my fifth year but would have been engaged in the writing phase in the previous academic year save for going on leave to do a fellowship in clinical and organizational bioethics. During that time I actually started working on the second chapter “Shall We Tell the Patient?” Blocking Bad News in End- of-life and Health Information Sharing but this was disrupted by requests to speak in India on the bioethics of sallekhanā so I switched instead to working on chapter three “Is it Suicide?”

Ritualized and Medicalized End-of-life Practices: South Asian Ritual Practices of Fasting and

Immobilization at the End-of-life (Jain and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards. I am a Medical Anthropologist and philologist by academic training, and although my current study combines these disciplines, my initial project was to be an investigation of medicine as it appeared in the Buddhist discipline codes, particularly the

Mulasarvastivada as upheld in the Tibetan Buddhist traditions. I am an early-career clinical ethicist (sometimes also referred to as practicing healthcare ethics consultant, or bioethicist). My immersion in clinical ethics over the last four academic years has deeply influenced my writing and analysis of my research data, I think in a very helpful way as I always endeavored for this study to be a practical guide to those caring for South Asians. I am a former bedside caregiver for two decades (a Health Care Aide, or nursing assistant and now called Personal Service

xvi Worker, with additional certification in palliative care) almost every area but particularly critical care (emergency and intensive care), medicine, trauma and neurosurgery, oncology, infectious disease, palliative care, gerontology and hospice, listed loosely in descending order of time spent in each area. I have been a scholar of Asian religions, cultures and languages for twenty-five years, with my first degree being in East Asian Studies from an initial strong interest in Chinese religions and language. Most significantly I must say that I am a practicing Tibetan Buddhist, religious teacher, Buddhist corrections chaplain, and was formerly a monk of thirteen years having spent periods of time in all three levels of ordination (initial entrance into homelessness or pre-novitiate, novice and full or rabjung, getsul and gelong in Tibetan) the last two received from H.H. the Dalai Lama. I also lived in Dharamsala, the last of my four field-sites, for about four years but thirteen years prior to the study. I also participated in a six-week residential research and study program within the Jain community nine years ago, and have spent the years since mostly producing Jain Studies academic output. So, although I was what I consider to be a private Vaishnava for a spell before I became a Buddhist, and with an interest in Hinduism which only seems to increasingly grow, I mainly have deep connections with both Tibetan

Buddhist and in India. My shift more towards Jain Studies during my Master’s degree was in part a conscious attempt to achieve more objective distance from my area of study.

As well, my time within the Tibetan Buddhist and Jain communities greatly helped my networking for recruitment of participants. However, speaking Tibetan and having both insider and outsider status as a non-Tibetan who is a Buddhist in the Tibetan tradition likely would have an effect on how my informants saw me as a researcher and the way in which they answered in interviews. There often was a natural and genuine closeness that I did not experience with the other groups, save for those that were already close associates. Being non-Asian, though, helped

xvii maintain a degree of cultural distance between myself and my informants as I am a white, cisgendered, heterosexual male of British biological descent but adopted at birth by a Jewish father and a Polish-Catholic mother who converted to Judaism, and later re-adopted by another

Jewish father (my mother remarried). Both sides, fascinatingly since one side is Christian and the other Jewish, trace back to a central European region formerly called Galicia in what was

Austro-Hungary but now straddling and the Ukraine.

I will also mention that save one interview with a translator, in Hindi with my sole Jain nun informant, the language of interviews was entirely in English. Although my limited knowledge of Hindi and more robust command of Tibetan were helpful to clarify some concepts, terms and phrases during interviews, I was unable to perform full interviews in the first language of interviewees because of the sophistication of the discussions. For the questionnaires, I did have a chart of the Likert Scale written in either Hindi or Tibetan, which seemed to be helpful. I also had one informant that was self-identified as illiterate, however, I am aware that the need to perform the interviews in English skewed my cohorts towards more literate, and thus perhaps more advantaged, participants.

Anthropologist Norris Brock Johnson suggests to ethnographers that “[a]t some point the stranger must demonstrate an interest in, and love for, the culture and people in themselves, rather than as the object of ethnographic study. One must give up some of the observer/researcher role and do something well that is valued by the culture.”1 During field- work, it was not difficult to demonstrate my concern for the cultures, languages and religions of the study informants. Establishing rapport was facilitated by merely sharing the purpose of the study and being a scholar of South Asian religions, but was deepened by any indication of language learning and ability, and community or religious engagement. For example, deploying

1 Johnson 2007: 90

xviii any Tibetan language and identifying as both Tibetan Buddhist and a former monk helped for swift connections with Tibetans and an assumption by them of my having a certain disposition and knowledge-base. My wife and I also taught, together and separately, at Dharamsala’s local

Tibetan charitable hospital, Delek. This facilitated an ease of access to their staff, many of whom are study participants, making connections with HCPs unprecedented at the other field-sites.

While working with Indians, sharing the amount of time I have spent in India engaged in religious practice, pilgrimage and study, as well as academic research, made for immediate bonding and rapport.

There is the potential for having an excess of empathy for study informants and the research subject matter. It can be difficult to detect such things as excess empathy in isolation, so

I am thankful for the academic guidance from my committee in this regard and overall. As an ethnographer, though, I have had insider status in one of the several religious cohorts that I study as well as in healthcare systems, both for decades. I feel deeply from experience the issues that arise between patients, families and healthcare teams, and this concern led me into the fields of academic bioethics and clinical healthcare ethics. I have never seen this project as merely an academic exercise for scholars to read, but I also ever have been vested in the relevant communities benefitting from this collaboration between the informants and myself, especially patients, and know that many in those communities are waiting to hear back on the results of this study. I will also add that too much objectivity could very well be worse, and a lack of empathy can be accompanied with a brute force or hard truthtelling that can have the opposite of the intended effect. Analogous with the delivery of sensitive medical information, which will be discussed at great length in chapter two “Shall We Tell the Patient?” Blocking Bad News in End- of-life and Health Information Sharing, giving recommendations for improving aspects of end-

xix of-life care and decision making to Indian and Tibetan audiences must be done sensitively if they are to be useful. Harvard Divinity School Professor Swearer says this: “A religion…embodies and expresses the genius of a particular culture… The study of a religious system…calls not only for analytical skills but also the qualities of imagination and empathy.”2 Swearer speaks of this in the context of approaching religious studies in a way that is broader than fixating on textual orthodoxy, and my approach of combining ethnography with textual, legal and media analyses

(with empathy) is aimed at producing a contemporary, real-life picture of the struggles and triumphs in healthcare and EOL decision making among select adherents in India.

During my next visit to India after field-work, presenting content from the first chapter I was working on at the time, a fellow Jain studies scholar and presenter at the National Law

University (NLU) in Delhi quoted something from my prior published article, mentioning me by name. This was a heartening sign that my earlier study was read by some and made a small and helpful impact on the Jain community, and I hope that this dissertation will also be read by those belonging to the religious communities that the study participants belong to. To be sure, I also asked each informant if they would be interested in receiving the results of the study, for which there was overwhelming interest and anticipation. I hope as well that others with either academic or practical interests in the subject matter, such as scholars of religious studies, bioethics, South

Asian Studies and informal caregivers and healthcare professionals who take care of South

Asians will also read this study. There are also plans to publish it in future in a more abridged and accessible form for lay audiences.

2 Swearer 2010: xv

xx Note on language

There are many non-English terms within this study, mostly Sanskrit, Tibetan and Hindi but with a few terms from some other languages as well (such as Persian, Arabic and Hebrew).

As much as possible, Sanskrit terms will be transliterated by the International Alphabet of

Sanskrit Transliteration (IAST). For Tibetan, however, the closest approximation of the phonetic transliteration will appear Romanized in the prose for ease of reading since some letters in

Tibetan words are unpronounced. In the accompanying footnotes for Tibetan words, there will be included another rendering of the transliteration in a style called “Wylie” which more closely gives the actual spelling of the Tibetan. This often includes prefixes, suffixes and superscripted or subscripted letters stacked with the root letter, of which not all are pronounced but can alter the sound.

xxi 1

CHAPTER 1: Introduction End-of-life Decision-making of Select South Asian Religious Adherents through Ethnography, Clinical Ethics, and Legal/Textual Analyses

Preamble

The intersection of religious adherents and biomedical personnel during medical decision-making is a common event in hospital settings in contemporary India, and can add much nuance to the interpersonal and deliberative dynamics. This doctoral study explores healthcare decision-making processes and participants, but with a particular focus on end-of-life

(EOL) care in the context of select cohorts of South Asian adherents. Although mostly focusing on experiences related to people dying in hospital, it is hoped that the findings of this ethnographic study will be useful in any setting where South Asians receive EOL care. This includes but is not limited to palliative care and hospice environments, places where death is expected. Perhaps even more necessary, though, is to clarify EOL decision-making for the sake of those who are receiving such care in settings where are often unexpected and yet still occur with great frequency, such as in emergency rooms and intensive care units where critical care is delivered. Despite frequent deaths and rampant ethical dilemmas in which the stakes are of the highest order, such environments often are not geared towards providing high quality EOL care. Both structurally and in the training of health care professionals who work in hospital areas outside of palliative care that have many (or even occasional) deaths, the focus is on curing disease and not the provision of comfort care to dying patients and supporting their families.

Some of the most common EOL issues that require decision-making and which often give rise to ethical dilemmas, in which various principles and values of the players come into tension, are: pain management; withholding or withdrawal of medical treatments; artificial hydration and nutrition; aggressive heroic medical interventions such as mechanical ventilation,

2 cardio-pulmonary resuscitation (CPR) and blood-pressure medication; death determination; organ and tissue retrieval and donation and so on, to name but a few. Most of these issues are discussed within this study, save organ and tissue retrieval and donation. For the purpose of deliberations on such matters, autonomy has come to be reified in healthcare delivery and bioethical literature outside of India, such as in Canada, the United States and the United

Kingdom. Self-determination pushes against the possibility of those other than the patient themselves unilaterally controlling decision-making processes, such as medical practitioners or family members. However, clinical experience and research throughout my graduate studies have led me to become suspicious of autonomy as a flawless ideal that necessarily leads to the best patient outcomes. As such, one of the driving research questions was to inquire of adherents into how decision-making is carried out, and by whom, in select locations in

India. My hope was to not only get a sense of the role autonomy plays in both healthcare and

EOL decision-making in contemporary India, if any, but also to uncover any creative approaches that may go beyond autonomy and be potentially useful among South Asians and even others who grapple with some of the toughest deliberations in life: what to do when it is coming to an end.

Another research question, one which adds more specificity, was whether religion influences EOL decision-making. Religion in the context of this study was defined elaborately by the informants themselves, along with other relevant key concepts such as health, illness and death.1 For now, although I resonate with a Geertzian symbolic approach,2 when I speak of the influence of “religion” on decision-making I intended it to mean both normative, or orthodox, ideologies as well as deeply held religious beliefs of adherents. In advance I considered that

1 This material is found in Appendix D - Defining Key Terms: Informant Perspectives 2 My philosophical leanings will be elaborated upon later in this chapter under context and methodology.

3 adherents might well hold strictly to normative religious views, or not at all, all the while personally identifying with their particular tradition. I anticipated that they could also operate with a mixture of normative views in tandem with uniquely personalized views. Yet still there could be some who might not strictly adhere to normative positions, but in the context of the end-of-life might choose to deploy them or feel compelled to. As for normative religious positions that could impact EOL decision-making, we can think of some well-known examples which appear commonly in my local clinical context in the Greater Toronto Area in which there are strong religiously-based conscientious objections to starting or stopping certain interventions.

Some of these might be: avoidance of , Medical Assistance in Dying and the removal of artificial feeding and hydration by some in the monotheistic traditions of Christianity, Judaism and Islam on the basis of the sanctity of life principle; refusal of blood products by followers belonging to Jehovah’s Witness; refusing the removal of life-support from a patient deemed brain-dead, or even requesting the rescinding of death certificates, on the basis of not seeing as “real death;”3 and so on. These are broad tendencies, and of course there is great variation in how individuals approach their own religion and medical decision-making. There is also great variety among the Indic religious traditions, within them, and between individual adherents.

3 At the time of writing there were two brain-death cases being litigated and in the news-cycle in the Greater Toronto Area, one of a patient belonging to a Christian family (McKitty) and the other from an orthodox Jewish community (Ouanounou). Although one family earlier disagreed with the accuracy of the brain-death determination itself by multiple independent physicians, during the proceedings they changed their approach and instead cited religious objections that had never been mentioned to the treating team. Both families denied that their loved-ones were dead because their respective religious traditions do not see brain-death as actual death, but rather cardiac and respiratory failure. Both families refused to give consent to remove life-support and asked for the death certificates to be rescinded. One major difference between the cases is that there was no evidence that McKitty held the same religious views as her family. At the time of making revisions to this study, some time had passed since the Justice deliberating the Christian case had decided in favour of the treating team, recognizing brain-death as a valid basis for the removal of life-support, and the Justice of the Jewish case deferred to this decision since the cases were structurally so similar. The McKitty case is still under appeal.

4

Biomedically, the aim of healthcare could be cure of disease or at least the amelioration of symptoms, but in the context of EOL care it could be said that the best outcome is a ‘good death.’ The definition of a ‘good death’ varies, of course, and many of the study participants weighed in on this topic. It is safe to say, though, that there is some overlap between the views of biomedicine and the general public in the hope for a calm, swift and pain-free passing. The South

Asian religions that serve as the anchors for this research project, namely Hinduism, Jainism and

Tibetan Buddhism, each have normative stances on what an ideal death should look like. Being sure not to approach such religions as monoliths and having sensitivity to the locational and philosophical differences within each, as well as the above-mentioned variation based on individual approaches, there are still some noteworthy tendencies in the various traditions with regard to the components of an exemplary death. Hinduism is rife with examples of adherents dying in what are thought of as spiritually charged locations such as at the convergence of sacred rivers or by the banks of the River Ganges, with the aim of purification of sin and extraction from the cycle of rebirth. Jainism promotes the reduction of the influx of karmic matter, which comes from bodily actions, by ceasing oral intake (and sometimes ambulation) for some period before death as with the practice of Jain fasting at the end of life (sallekhanā). In Buddhism there is often an emphasis on being as conscious as possible, and to have a virtuous state of mind, leading up to and at the moment of death out of concern for the mental and emotional influence on the quality of the transmigration process and resultant rebirth of the deceased. To the same end, it is often a Buddhist recommendation to not grieve nearby the actively dying person or the corpse. South Asian religious adherents themselves provide further variation with their personal versions of a ‘good death’ as some reject the normative prescriptions and are flexible within the context they find themselves. Some see continence of bladder and bowels at death as an

5 important indicator of a successful death and thus cease oral intake before active dying despite there being no textual prescription to do so.4 Some Jains might well admire the exemplary practice of fasting and immobilization unto death but choose to continue walking, drinking or receiving intravenous fluids or pain medication5 as long as possible before vital signs cease so as to avoid the discomfort that comes with remaining bed-ridden and becoming dehydrated. A

Tibetan Buddhist, while in hospital and following the principle of non-disturbance of the body post-mortem, might be amenable to transferring the corpse to a gurney for transport to the and then choose for the corpse to remain there for three days without disturbance.6 As this study will demonstrate, enthnographic interviews of individual adherents can help to both represent major themes in the religious approaches of its adherents, as well as tease out the unique approaches of individuals.

But, who is to say what is the best approach at the end of life? Rabinow and Rose state that “[t]he rhetoric of choice clearly resonates with the ethic of autonomy at the heart of advanced liberal modes of subjectification.”7 Like them, we might challenge the concept of

“choice” by questioning the validity of the expectation of patients making choices in medical decision-making. Even when autonomy is held to be the primary principle during informed consent or refusal, is the patient as an agent, and a dying one at that, able to effectively make choices related to their treatment or the withdrawal of interventions? There can be major difficulties with placing the decision-making responsibility entirely on the shoulders of the autonomous patient. Despite an ideal scenario of having full mental capacity and all of the

4 Justice 1997, Murata 2010. 5 Braun 2015. 6 This is from an actual de-identified case I was involved with when I was a nursing assistant and subsequently wrote about in my 2012 Master’s thesis entitled “A Bioethical Analysis of a Buddhist Death in a Toronto Catholic Hospital.” 7 Rabinow/Rose 2006: 208

6 information required to make an informed decision, the burdens of illness, aging and dying

(oftentimes combined) themselves can leave the patient potentially vulnerable to the undue influence of others. Should others who are not burdened as the patient is, then, necessarily make decisions for the patient by proxy?

Not disavowing autonomy entirely, this possibility of compromised autonomous patient decision-making under the weight of illness, and the danger of coercion by others, led me to explore various decision-making models in advance of entering the research field-sites. Some decision-making models undermine the entitled position given to autonomy, often without much critical analysis. For example, in their study “Family Centered Decision-making and Non- disclosure of Diagnosis in a South East Asian Oncology Practice,” Back and Huak give five

Physician decision-making models: (1) Paternalism, (2) Rational Non-interventional

Paternalism, (3) Family Centered Decision-making Model, (4) Shared Decision-making Model,

(5) Fact Provider Model.8 From these it is theoretically possible, and indeed occurs in Ontario hospitals, to combine the Family Centered Decision-making Model, which involves the family and providers but excludes the patient, with the Shared Decision-making Model, which involves the patient and providers but excludes the family, into a collaborative form of decision-making involving the patient, family and a Health Care team. I started to call this “heteronomy,” based on a term appropriated from Anthropologist Angela Garcia’s ethnography The Pastoral Clinic:

Addiction and Depression Along the Rio Grande. 9 Garcia uses the term to label the intergenerational co-dependence of drug addicts from within the same family in northern New

Mexico’s Española Valley. My usage the term, which to me seemed to neatly bookend

“autonomy,” in the context of medical decision-making was meant to simply imply multiple

8 Back/Huak 2005: 1057 9 Garcia 2010: 32, 114

7 players working at decision-making interdependently as a means to dethrone autonomy in the service of a model that could strengthen the pursuit of patient best interests and outcome.

However, upon further investigation of the term it became clear not only that “heteros” in the

Greek means “other”10 and not “multiple,” but also that “heteronomy” has been used historically by philosophers such as Kant in which “the term is specially used as the antithesis of

‘autonomy’” and meaning “the state of being under the rule of another person”.11 Garcia framed the intergenerational relationships of Hispanic drug addicts with the term “heteronomy” as networks of support between family members and as a means to push against the common trope of the addict as isolated or “autonomous.”12 It was this that inspired me to adopt and adapt the term. However, I have abandoned using the term to represent a collaborative decision-making model since it resonates too much with the worrisome phenomenon of coercion in decision- making in which an “other” pressures the person in a direction that they might not otherwise choose, something that the informants and myself frequently rail against in this study. Despite conceiving of the label before entering the field, “heteronomy” was not something that I mentioned in any interviews. Along with other means of preventing informant bias, such as not mentioning specific religious texts that others scholars or myself think might inform the study topics such as conceptions of death, I instead simply presented various decision-making configurations for informants to think about and discuss. As will be shown, such as in the final chapter, informants not only were not led in any direction with regard to particular decision- making models, but they also proved to not be bound to the handful of possible configurations of decision-making players that I offered as guidance in my questions. Rather, they creatively came up with many of their own.

10 Nelson Canadian Dictionary of the English Language 1997: 637 11 Chisholm 1911 12 Garcia 2010: 32, 114

8

The concepts of ethnoconvergence and transculturation13 can be useful when applied to decision-making moments and processes as points of contact between religious and biomedical personnel and discourse during which the public and healthcare professionals are each mutually

“exerting an influence and being influenced in turn.”14 These moments are not just the meeting of individuals but of cultures, those of the patient and family with the culture(s) of biomedicine.

As with other cultures, and religions, the culture of biomedicine is not singular and it is reasonable to think of biomedicine as a “super-culture,” coined by Bagby, which contains within it various sub-groupings or “groups of communities.” 15 Biomedicine is necessarily heterogeneous while sharing characteristics16 or “cultural regularities,”17 as well as values.18 The colonial context from which Cuban anthropologist Ortiz conceived of the “transculturation” neologism, the Spanish conquest of Cuba, is significant when applied to the healthcare context.

As trailblazing social anthropologist Malinowski states in his introduction to Ortiz’s work, “the concept of ‘transculturation’ is used to apprehend at once the destructive and constructive moments in histories affected by colonialism and imperialism.”19 Ortiz himself spoke of the failure of transculturation when indigenous Cubans were met with Spaniards.20 Such failures in transculturation are common in healthcare as well since rather than there being mutual influence between patients and healthcare providers, there all too often is an overbearing and hegemonic influence from the side of biomedical culture in which the voice of patients and families are stifled or even silenced.

13 Ortiz 1995 [1947]: 97 14 Ortiz 1995 [1947]: 98 15 Bagby 1959: 106 16 Kleinman 1997: 52 17 Bagby 1959: 105 18 Lock 1988 19 Ortiz 1995 [1947]: xv 20 Ortiz 1995 [1947]: 100

9

Fadiman presents a perfect example in her bioethical ethnography which details the difficult relationships between a Hmong family with a sick child and healthcare providers in

California.21 In essence, the various healthcare providers and teams involved in the child’s care did not do enough to understand the family’s perspective on the illness which led to the child having catastrophic brain damage that was likely preventable. The child’s condition was labelled

“epilepsy” by the providers and called “the spirit catches you and you fall down” by the family, the latter being the title of the book. The subtitle, A Hmong Child, Her American Doctors, and the Collision of Two Cultures, demonstrates that Fadiman also subscribes to the view of biomedicine as culture. The Hmong family saw the child’s state as a form of “spirit loss” which was the result of the child being frightened during infancy. The family employed traditional means of healing, and even saw the child’s state as a sign that she had the potential to be a shaman in their community. The biomedical teams suggested various treatments, such as seizure medications, and were both frustrated with and critical of the family for not being compliant with the treatment plans. Even the term “compliance” itself is laden since it implies subservience. The concept has been interrogated in the medical and bioethics fields, and sometimes “adherence” or

“fealty” are suggested as alternatives, but I have yet to come across a term which is less fraught.

A term is needed that is not embedded with power dynamics. We might say that it was a type of ethnocentrism, the opposite of ethnoconvergence, on the part of the healthcare providers for not exploring and bridging the vastly different etiological views that led to terrible outcomes for the child. Some might argue that the responsibility was shared between the family and providers, but

I am in agreement with Fadiman who places the onus on providers as being in a privileged position of power in relation to a family that had intersectional marginalization from their religious beliefs to their language barriers.

21 Fadiman 1997

10

I have experienced transcultural failures in hospitals too many times to count, instances in which clashes between families and healthcare teams lead to tension, arguments, and even all the way up to lawsuits. Some of the most intractable cases have families threatening to take their often fragile and vulnerable loved-one to a different facility where the services are otherwise equivalent, and at least once during a family meeting an allied health professional slid a form across the table and said “sign this. It is time for your mother to go.” Often nobody comes out unscathed, but sadly the patient usually bears the brunt. When considering those from marginalized communities, such as people who are racialized, homeless, drug users, Indigenous, and those who identify as one from among the LGBTQ2AI communities22 to name but a few, transcultural failure in healthcare can lead to breaches in trust in the value of therapeutic alliances so much so that the patient will avoid seeking care even when desperately needed.

There can also be systemic obstacles to accessing essential services. An example might be a patient who is misunderstood by staff, and then lashing out from their desperation, and being permanently banned from an institution and being unable to travel to another facility. Structural violence such as racist stereotyping can also result in barriers to receiving even life-saving healthcare, as in the horribly tragic case of Brian Sinclair. An Indigenous man in Winnipeg,

Manitoba, Sinclair died from an easily treatable condition while waiting for care because staff thought he was sleeping off intoxication when, in fact, he was dying from septic shock.23

The hegemony and ethnocentrism of biomedicine, when it absolves itself from scrutiny24 through affecting social dynamics but disallowing itself to be affected, 25 can perhaps be deconstructed through various means. Conceptually, in addition to Ortiz’s and transculturation, I

22 Lesbian, Gay, Bisexual, Transgender, Queer, Two-spirited, Asexual, Intersexual 23 Brian Sinclair Working Group, 2017. 24 Lock 1988 25 Burri/Dumit 2007

11 have been considering both “contingency” from the medical anthropologist Lock,26 and “co- production” from philosopher Latour and physician and ethnographer Mol.27 Truly collaborative decision-making can see an equalization of power and authority in the dissolving of subject and object28 within the common aim of the players for the best outcome of not only the patient, but also their families and the health care team. Mol had unparalleled access to interactions between staff and clients during data collection for her hospital-based ethnography due to her insider status as a physician, and suggests a similar conceptual approach. Perceived power dynamics between patients and providers can potentially be disrupted by way of co-production in which their respective roles are defined interdependently. If one does not exist without the other, how can one assert themselves over the other?

Transculturation hinges on three other concepts which have been described as phases that can occur after cultures meet: deculturation, acculturation and neoculturation.29 “Deculturation” is defined by Ortiz as “the loss or uprooting of a previous culture.”30 Next is “acculturation” which Ortiz defined as “the process of transition from one culture to another.”31 Although a term avoided by Malinowski in favour of “culture contact,”32 “acculturation” is richer in meaning by going beyond mere contact. Lastly is “neoculturation” in which interaction results in “the consequent creation of new cultural phenomena.”33 Malinowski affirmed, adopted and described

Ortiz’s concept of transculturation:

It is a process in which both parts of the equation are modified, a process from which a new reality emerges, transformed and complex, a reality that is not a mechanical agglomeration of traits, not even a mosaic, but a new phenomenon, original and

26 Adelson et al. 2013 27 Latour 2004, Mol 2002 28 Latour 2004 29 Coronil 1995: xxxvii 30 Ortiz 1995 [1947]: 102 31 Ortiz 1995 [1947]: 98 32 Coronil 1995: xxxvii 33 Ortiz 1995 [1947]: 103

12

independent…it is an exchange between two cultures, both of them active, both contributing their share, and both co-operating to bring about a new reality of civilization.34

Successful collaborative decision-making in a healthcare context might be achieved, as per social theorist Marotta, when “cross-cultural contact is a cooperative and equal exchange.”35 We also might say, then, that collaborative decision-making is a transcultural process that can result, if successful, in a micro-level transient neoculture. This ideal process would have among the players a shared purpose of patient best interests, perhaps added to it a utilitarian approach to maximize the best outcomes for all players, especially but not only for the patient. “Best interests” will be elaborated upon later in the study but, for now, I will clarify that with this term

I do not only refer to clinical best interests such as whether a treatment will improve the health and well-being of a patient or not. Provincial healthcare legislation in my local context of

Ontario, Canada provides guidance with an approach that prioritizes the person themselves in best interests standards for substitute decision-making which occurs by proxy when a person is unable to make a medical decision for themselves. The Health Care Consent Act places so much importance on the person that all other considerations, including clinical ones, are preceded and trumped by prior applicable wishes expressed by the person when capable.36 In the absence of such wishes, best interests standards are to be followed and include the values and beliefs held by the person, present wishes of the incapable person which don’t have to legally be followed but must inform substitute decision makers (SDMs), and clinical best interests which has four facets that include the likely benefits of the treatment, the effects of the absence of treatment, weighing risks and benefits, and consideration of alternative treatments that might have the same

34 Malinowski 1995 [1947]: xi 35 Marotta 2014: 95 36 HCCA 1996: s.21(1)

13 benefits but be less burdensome.37 The order of the standards is not explicitly pointed to as indicating prioritization, but I think that the authors presented them in an order that continues to give priority to the person. I offer this view of best interests knowing that it is an expansive one and that often best interests can be more narrowly defined, if at all, to mean only the course of action which will have the most impact on a disease state. So, groups of stakeholders with unique configurations, sometimes with and sometimes without the patient based on their ability to participate, can engage in medical decision-making anchored by the pursuit of patient best interests, and employ creative means to do so. The micro-level neoculture that results from such decisional transculturation between non-healthcare-providers (henceforth “non-HCPs”) and healthcare-providers (henceforth “HCPs”), which I label as transient since the group and exchange are only needed for particularly difficult decisions and only until the decision is made, can offer the strongest chances for achieving the best outcomes for the patient.

As I write this, I am processing the experience of being in a recent discharge support meeting (DSM) involving a patient, several family members and various medical, nursing, and allied health care professionals. It was a big group of about fifteen people, and although intended to mainly be for the purposes of deciding on where the patient would go upon leaving hospital, we also addressed the overall goals of care since going home was no longer an option and the patient would have to wait for placement in a long-term care facility. Although lengthier than scheduled and a difficult process because of discord between one family member and the others, there was good movement with a decision made about placement and one about goals of care pending further family deliberation. Although limited in size, scope and time, this group meeting bore all of the hallmarks of transculturation. The meeting took place in a large physiotherapy room. Although a multipurpose space where such meetings typically happen and such meetings

37 HCCA 1996: s.21(2)

14 being part and parcel in hospital work for the healthcare professionals in the room, all of us had been taken out of our respective dominant contexts such as home, offices, nursing stations or the bedside. In addition, some norms were left outside the room such as the family’s exclusion of the one family member and the gallows humour used as a coping mechanism at times in healthcare.

Personally, I can say that the professional expectation to not demonstrate emotions in healthcare was put aside and beyond mere unconditional positive regard, I felt and expressed both empathy and sorrow in a controlled manner. This arose genuinely and not as a technique, and seemed both appropriate and helpful. Suspending some respective norms in such a way can be seen as a variation on the theme of deculturation. Together as a group having some shared ground rules, such as speaking in turn, and an explicit common purpose, the best interests of the patient, we became acculturated as we transitioned into a new and different group. This was not one culture being assimilated into another, “assimilation” being a term that Malinowski made synonymous with acculturation,38 but rather a moment during which we each entered each other’s worlds to some extent. This DSM group, a micro-level transient neoculture, was then able to come to consensus on the decision of patient placement after discharge, and edge closer to a consensus decision on the goals of care being either active medical management or palliation.

Several major points on ethical theory presented by Bhattacharyya, a former nurse herself, in her study of Hindu bioethics in relation to assisted reproductive technology39 bear mention in relation to medical and EOL decision-making as explored in this study. She proposes that exposure to plurality broadens perspectives and adds types of reasoning that can help with one’s own and other’s decision-making at difficult moments, while distinguishing between diversity and pluralism in that the former is mere toleration of others whereas the latter is

38 Malinowski 1995 [1947]: lix 39 Bhattacharyya 2006

15 interactive. She highlights both the importance of bioethical cross-fertilization between academics and clinicians, as well as how crucial religious voices are at the bedside. Such voices must neither be ignored nor underestimated as they come honed by the insights of long-lasting traditions over time and “religious beliefs often play a major role in how people make decisions regarding medical care and how they think of biological issues.” 40 She requires cultural competency of healthcare professionals which means “providing care to patients and their families that is compatible with their values and the traditions of their faiths.”41 Lastly, one of her major contributions to bioethics informed by religion is her usage of narrative ethics as an applied and case-based approach to decision-making, in this case based on the Hindu epic

Mahābhārata, since by comparison principle-based approaches (or the metaethics, ethical and moral reasoning processes themselves, that is preferred by the academy) can be faulty by oversimplifying dilemmas. Before entering the field, I thought that Bhattacharyya’s narrative and case-based approaches, or casuistry, could be useful when working with non-HCPs and HCP informants, as well as with any influential religious texts that would be referenced during interviews.

This chapter will establish the need for this study and the state of the field by way of relevant Canadian studies and bioethics literature on the Indic religions; elaborate on the study itself through contextualization, methodology and theory; and give a brief introduction to the ancient Indic religious traditions.42

40 Bhattacharyya 2006: 5 41 Bhattacharyya 2006: 21 42 Informant perspectives on the definitions of key terms (health, illness and their causes, death, religion, healthcare and end-of-life care) was to appear in this chapter but was made into Appendix D. Also, a section with informant views on trust in healthcare and healthcare systems in India was intended to be in this chapter as well but has not been included for the sake of brevity. It will appear in a future study.

16

State of the Field and Study Need

Maynard, a Professor of Sociology at the University of Wisconsin and one who uses a mixed research method which includes ethnomethodology and conversation analysis, offers many insights into how people are affected by bad news in his study Bad News, Good News:

Conversational Order in Everyday Talk and Clinical Settings. He states that “[g]iven the centrality of the informing process - involving talk and interaction...[in] real-time conversational news deliveries...- its investigation has been neglected compared to its product, which is the memory or memory recount.”43 By specifically investigating healthcare and EOL decision- making processes, especially in the final chapter “Mostly a Collaboration.” Healthcare and End- of-life Decision-making Among Select Indian and Tibetan Religious Adherents, which is dedicated to decision-making but the predominant theme throughout the study, this project aims also to somewhat correct this imbalance in the research towards outcomes rather than process, at least with certain South Asians in their particular contexts. This is not to say this study will ignore outcomes, which we could say are of special concern to informants with regard to bad news, but that the processes involved in healthcare decision-making will be elaborated upon with regard to such aspects as the players, location, timing and content of healthcare information sharing.

In order to establish the state of the field, this section will explore material from both

Canadian-based health studies and Indic religious studies concerned with bioethics.

Canadian Studies

There are many medical studies that have called for research which can assist healthcare teams in the delivery of care that is better suited to the unique needs of minority groups. A study

43 Maynard 2003: 3

17 with a focus on Canadian critical care entitled “Decision-making in the ICU: Perspectives of the

Substitute Decision-maker” from the Journal of Intensive Care Medicine found, unsurprisingly, that “SDMs of a non-dominant language or culture have unique needs and may report different levels of satisfaction. Future studies may target other populations who may have different perceptions of the decision-making process.”44 In another example, the Royal Society of Canada expert panel on end-of-life decision-making produced a report entitled “End-of-life decision- making in Canada” published by the Journal of Bioethics which states that our “diversity reinforces the need for culturally sensitive end-of-life care and, ultimately, a deeper understanding of the underlying values and preferences of minority groups related to death and dying.”45 It also makes this call:

Further research is needed on cross-cultural perspectives to gain a clearer and more in- depth understanding of how health practitioners can provide end-of-life care that is culturally appropriate and does not inadvertently impose dominant Western values regarding death and dying.46

It goes on to specifically discuss diasporic South Asian religious adherents in Canada:

The Canadian South Asian population is another large and growing minority group whose beliefs about death and dying – as well as preferences about end-of-life care – stem from different religious faiths including Islam, Hinduism and Sikhism. In a Health Canada- sponsored study on advance-care planning led by Con, respondents from South Asia viewed as ‘God’s wish’, and so they did not want to discuss or plan for their death. They also believed that attempting to predict one’s future and end of life would ultimately draw it nearer, which Con points to the need to ask culturally sensitive questions about end of life without explicitly revealing that their purpose is that of advance-care planning.47

Unfortunately, this crucially important panel explicitly and entirely ignores the non-theistic

South Asian religious traditions of . It also shares what is framed as a commonly held view of divine will, but with no statistical support and which excludes adherents

44 Heyland et al 2003: 81 45 Schüklenk et al. 2011: 13 46 Schüklenk et al. 2011: 13 47 Schüklenk et al. 2011: 13

18 who do not embrace intercession by a creator deity. The suggestion of deploying culturally sensitive EOL questions as a clandestine means for advance care planning (ACP) is both shocking and troubling and betrays an imposition of values, such as the importance (and even mere acceptability) of imagining and discussing future potential medical decisions, in the very way that the study itself speaks out against.

Since this study relied so heavily on Con’s 2007 study, I will next interrogate that project.

Although admirable in the efforts to speak to minority groups directly about the thoughts on

EOL care, resulting in many helpful insights for healthcare at all levels, there are both methodological difficulties and flat-out errors contained within. First is the sampling of participants:

Two focus groups with 11 participants each were conducted with members of the South Asian Women’s Wellness Group comprised of South Asian Punjabi speaking seniors who met regularly to discuss health issues… The fourth focus group was conducted with 5 interpreters (3 Chinese; 2 South Asians) who shared their experience in interpreting EOL discussion between patients, family and HCP.48

Although including a good number of South Asians that likely allowed for thematic saturation, the larger groups were comprised of those who are almost definitely Sikh, and the other group had two South Asians of unknown cultural/religious/linguistic backgrounds. The giant leap of saying that their perspectives thereby represent a “South Asian” perspective writ large is a gross exaggeration. This is especially so given that the researcher is explicitly aware of the multitude of South Asian communities:

South Asian (sometimes referred to as East Indian in Canada and Asian Indian in the United States) may be defined as any person who reports an ethnicity associated with the southern part of Asia or who self-identifies as part of the South Asian visible minority group. This definition encompasses people from a great diversity of ethnic backgrounds, including those with Bangladeshi, Bengali, East Indian, Goan, Gujarati, Hindu, Ismaili, Kashmiri, Nepali, Pakistani, Punjabi, Sikh, Sinhalese, South Asian, Sri Lankan and Tamil

48 Con 2007: 13

19

ancestry… A lot of the research on South Asian people was separated by religious faiths: Muslim, Hindu, and Sikh.49

This may also be the source for the Royal Society of Canada expert panel on end-of-life decision-making to fixate only on the theistic religious traditions of Islam and Sikhism, as well as Hinduism. It is inaccurate to label “Hinduism” as a theistic or non-theistic religion because of the great variety of traditions (polytheistic, monotheistic, nontheistic) which are difficult to capture by the umbrella term, a term which was originally merely ethno-geographic. The later study piggybacking on the earlier study is a good example of compounded errors through uncritical repetition of data results from problematic study models. Twenty-two Punjabis, and two “other” South Asians, can hardly be called representative of South Asians. Perhaps it gives us a diasporic Punjabi perspective, and it should be categorized as simply that.

Next are a couple of errors. Con states that “[p]revious studies showed that the law of , an important doctrine of Hindu faith, which is related to a belief that life and death are in the hands of God, was a variable in whether ACPs were completed or not 50 .” 51 This misrepresentation of Hindu karmic theory is an artifact created by the author as it did not come from the Francis study. Francis draws from another study, accurately, by saying that “the doctrine of karma teaches that all experience is the reward or punishment of previous actions.

Therefore, any misfortune or ill health one suffers is the result of one’s past karma, either in this life or in a previous one.”52 Giving a “Hindu perspective” is a bit of a misnomer as well, as the tradition is not monolithic and is even multivocal within its various denominations. There is not always agreement on karmic theory (in any Indic tradition), and conceptions have changed through time as well. That aside, the emphasis on actions is suitable (the Sanskrit term karma

49 Con 2007: 18-19 50 Francis, 1986 51 Con 2007: 19 52 Francis 1986: 165

20 literally means “action”) and the hint of agency in “reward or punishment” speaks to interplay at times (such as seen in the transitional text that is the Mahābhārata) between personal responsibility and divine intercession. Although having both theoretical overlap and differences, divine intercession is absent in both Buddhist and Jain karmic theories, as they rely entirely on a universal law of cause and effect connected to consciousness. Con stating that karma is merely a way of referring to divine omnipotence wrongly makes Hinduism out to be no different than the

Semitic religions in that regard, when there are actually multiple approaches to karma in the various Hindu traditions. Another problem is Con’s statement that “Sikhism arose from

Hinduism.”53 This would be an accurate way to refer to Buddhism, but the origin of Sikhism is much more nuanced. Sikhs rail against such statements as indicated by the book Ham Hindu

Nahin, or We are not Hindus, published in 1898 and authored by Bhai Kahn Singh Nabha who was part of the Singh Sabha movement which pushed back against missionary activities and aimed to distinguish Sikh identity. Some have accused the founder of Sikhism, Guru Nanak, of merely being a disciple of the bhagat Kabir who is a personage of which both Hindus and

Muslims have tried to take ownership. Some also say that Sikhism is a melding of Hinduism and

Islam, as there are teachings, practices and symbols which harken to both of these traditions. Not surprising when considering Guru Nanak grew up in a Hindu family in a Muslim region. Many

Sikhs themselves would say that Guru Nanak had a direct and individuated revelation not dependent on any other religion. But, like Kabir, Guru Nanak was strongly influenced by, and critical of, both Hinduism and Islam. He preached non-sectarianism both for the sake of social harmony and for followers to experience the divine within and without the contentious interferences of religious identity.

53 Con 2007: 20

21

I am not writing off this study, merely pointing out some of its faults. One interesting finding from the study, however, comes from another sample group and directly speaks to the topic at hand. The study states: “Translator group - Interpreters for South Asian and Chinese people found that they were often put in a difficult situation when the family did not want them to tell the patient of diagnosis but were simultaneously being pressured to translate what the physician was saying to the patient.”54 This is a perfect example of a type of dilemma featuring the competing interests and values between the various stakeholders, this having specifically to so with healthcare information sharing but with the unique aspect of the intermediary being a third-party outsider of sorts.

Bioethics of Indic Religions

There also is a paucity of bioethics studies focused on Indic traditions, and those that do exist are either problematic or limited in scope. Buddhist bioethics trailblazer Keown demonstrates a lack of clinical contextualization by way of his textual bias, one that is also fixated on Pali texts. His position on brain death being a definitive moment in death determination in Buddhism55 is both too broad and ignores the presence or absence of heat, not breath (which he incorrectly conflates with prana or vital wind), as an indicator of the presence or absence of vitality and thus the presence or absence of consciousness according to one of the seminal Pali commentaries Vishuddhimagga (Path to Purification) by the scholar-monk

Buddhaghosa in fifth century Sri Lanka.56 At the bedside, it becomes clear that the brain-dead patient, even when not ventilated, retains heat in the body-core for some time and it is therefore more accurate to pinpoint the moment of death, according to Buddhaghosa’s standards, sometime after cardiac death rather than at brain-death.

54 Con 2007: 38 55 Keown 1995 56 Buddhaghosa 2010

22

As for Hindu bioethics, there are scanty materials and, although quite well done and helpful in my view, are narrow in scope. The scholar Bhattachaarya, a nurse with an abundance of clinical expertise, is readily able to apply her narrative ethics framework to the contemporary real-world clinical context through reliance on the major Indian epics Mahābhārata and

Ramayana, but has a beginning of life focus as indicated by the title of her work: Magical

Progeny, Modern Technology: A Hindu Bioethics of Assisted Reproductive Technology.57 I have worked specifically in Catholic healthcare for decades, and although now practicing clinical ethics in a non-faith based hospital I still work for a Catholic ethics centre and consult with many

Catholic clients including around pregnancy termination at various stages of fetal development.

As such, I find Bhattachaarya’s comparisons of Hinduism with Christianity rigorous and informative particularly with regard to theology related to hominization. Crawford in Hindu

Bioethics for the Twenty-First Century, like Keown, has an entirely textual focus but unlike

Keown its philosophical inquiry makes no attempt at any clinical application, even conceptually.

The author gives the bioethical issues at the EOL very broadly as including the “Ethics of

Suicide; Ethics of Euthanasia; Ethics of Aging; Ethics of Death and Dying”58 with no mention of decision-making in general or information sharing in particular.

Interestingly, and contrary to Con’s findings referred to by the Royal Society of Canada expert panel on end-of-life decision-making in which theistic respondents gave divine will as the cause of terminal illness (again admitting the faulty methodology of assuming that one particular group can stand for multifarious other minority groups as if they were a grand whole), Crawford has this to say:

…whereas Christian bioethics works within a supernatural framework in the issues of health and disease must reckon with divine or demonic agency, Hindu bioethics holds the

57 Bhattachaarya 2006 58 Crawford 2001: 29

23

individual responsible and gives preventive medicine a moral status. Given the goal of life as moksa [liberation], the individual is under obligation to maintain physical and mental fitness in order to facilitate that end. This is not to say that Christians are not held responsible for their state of health, but that the degree to which the will of God or the wiles of the devil are insinuated, freedom is rendered ambiguous and responsibility is compromised, albeit for a divine purpose.59

Again, as with Keown, this textual approach is at odds with some of those reporting from their lived-experience. Also similar to Keown, this writes out even what some of the texts themselves say about the cause of events and experiences. Bhattacharyya’s narrative ethics approach might say that, as per the great Indic epics, that there are elements of divine involvement in the course of human events. Saying Hindu karmic theory falls on either the side of pure cause and effect of actions or purely on divine will both fall short of the mark, albeit a rather unclear one at times.

There is even less material to be found on bioethics related to Jainism. Bilimoria, a

Professor in the USA, has focused on ritual death with his works on Jain fasting at the end-of- life.60 He has told me himself through correspondence that he has even been cited by the

Supreme Court of India on the contentious subject which is featured in another of my chapters on the intersections of religion, medicine and the law in the context of Jain and Buddhist ritual death as both traditions share fasting and immobilization EOL practices but only the Jains have been legally contested with accusations of suicide and abetment. This particular lack of Jain bioethics likely is the cause both of the great interest in and support of my work on bioethical considerations and clinical implications of both the Jain and Buddhist fasting and immobilization

EOL practices (sallekhanā and tukdam repsectively) by the International School for Jain Studies.

In 2010 I was part of their annual residential visiting researchers program and my project on sallekhanā and Catholic healthcare was published in both a Jain studies journal and collection of essays. In 2016 I was invited to speak on the subject at a series of conference events in multiple

59 Crawford 2001: 29 60 Bilimoria 1992

24 locations in India, prompted by the legal wrangling over the practice, which distressed the Jain community greatly. The chapter goes into great detail on this but suffice it to say that there is a need, and even a hunger, for more bioethical Jain studies.

This study will serve to correct some of these gaps and missteps and is the first study that

I am aware of to look specifically at EOL decision-making in any of the Indic religious traditions, let alone all of them. Additionally, because of the accusations that textualists are prone to ignore lived-experience as we have seen with Keown and Crawford and, vice-versa, that anthropologists often ignore texts, this study endeavors to use contemporary adherent voices in tandem with textual voices. One major shift in the development of this study was the choice to go to the field without presupposing which texts adherents rely on, including the preconception that they rely on any at all, with regard to health, disease, death and dying. This despite many other ethnographies which uncovered EOL textual reliance in India, such as Justice’s study on the bhavans () in Varanasi which had many respondents discussing texts such as the

Bhagavadgita chapter of the Mahābhārata.61 This opened up the possibility for my informants to discuss them if they so chose, and on their own terms. Also, the lengthy questionnaires provide an enormous amount of statistical data on the various cohorts themselves, but also in relation to one another. Particularly, variation between answers given by self-reporting adherents, their

HCPs and even some foreign HCPs help pinpoint fascinating dissonances and demonstrate that informant self-reporting is perhaps not enough to get “backstage” to what is actually occurring in the EOL decision-making processes of religious adherents in India.62

One perhaps obvious and an admitted lack in this study is there being no directly observed EOL decision-making moments in hospitals in the field-sites. This was a difficult but

61 Justice 1997 62 Statistical data found in Appendix B.

25 conscious choice in the development of the project. A few things are noteworthy in this regard.

The first is that a hospital-based study proper is categorized entirely differently and thus requires a very different and much more laborious process of research ethics board (REB) review. When deciding if I would go that route or not, I was very much influenced away from it by a strong

(and perhaps overextended) concern for the privacy and confidentiality of patients and their families, as well as a sensitivity to the often physical and mental difficulties and emotionally charged nature of being, or accompanying a loved one, in the last stages of life. Once in India, I quickly realized that even gaining access to merely attempt to recruit HCPs, never mind for access to patient-areas and patients and families themselves as would be needed in a hospital- based study, was extremely difficult. The lack of Hindu HCP participants speaks to this, and to the fact that my networks are more strongly developed among the Jain and Tibetan Buddhist communities. Nevertheless, I still feel strongly that there are important insights contained within from my informants who discussed their personal experiences and opinions of hospitals and relationships with HCPs.

Contributions to Scholarship and Healthcare

From its conception, one of the anticipated outcomes of this research was to start to develop a set of palliative ethical guidelines that are sensitive to those of South Asian decent, or, more broadly, to act as a seed for the beginnings of a South Asian Health Ethics Guide. Data and insights from this study could make helpful contributions towards these endeavours, but it would be best to produce such resources collaboratively by involving community stakeholders and other scholars. Such documents could have great potential to positively influence the experience of those within the circle of care for dying South Asians, both in healthcare and community- based settings, with the patient at the centre. As such, the study could be labeled as a type of

26 advocacy anthropology where one of my express goals is to improve palliative care delivery to

South Asians in their homelands and abroad by clarifying how religion affects key players in decision-making: patients, loved-ones, religious community members, and health care professionals. It was difficult, if not impossible, for me to envision embarking on an anthropological research project in religion, bioethics and South Asian Studies that would not have a direct and practical application in healthcare institutions.

Johnson also states that “[e]thnographic research is a political act, and political considerations influence the nature of ethnographic research.”63 This type of study might also be referred to as “public interest anthropology” which anthropologist Berreman considers as being

“on a most positive track where ethical commitments and practicality are concerned.”64 Not only can this study positively influence palliative care, and health care in general, in its delivery to

South Asian patients, but more broadly for religious adherents and patient populations belonging to minority cultural, linguistic and religious groups. The treatment of patients and families belonging to any minority group, or marginalized in any way, can and is often markedly different in my home locality despite Canada being renowned for exceptional healthcare policies and delivery. In Toronto hospital environments I have experienced countless moral dilemmas and ethical breaches, particularly in relation to patients of minority cultures and religions, and I act in both my academic and professional life out of a sense of obligation to both address such inequities and offer possible solutions. In many cases, decision-making is faulty because medical treatment consenting or refusal processes are not properly engaged in, often because of language barriers that are easily surmounted. The literature65 and my experience thus far affirm that medical decision-making processes in Canadian hospitals has much room for improvement, as it

63 Johnson 2007: 90 64 Berreman 1996: 313 65 Schüklenk et al. 2011

27 does in India from the literature related to Indian hospitals.66

There were two conceptual axes of this project in its development, that of vulnerability and voluntariness in EOL decision-making. Unlike sudden or unexpected death, I frame dying

(or the movement towards an expected death) as a special state deserving of extra resources because it involves gradually increasing levels of physical, and often also mental, impairment.

This can leave the dying person increasingly dependent on others and, therefore, increasingly vulnerable by being potentially subject to exploitation. On this, there seems to be compatibility between the philosophy of palliative care and current disability theory, such as that presented by

Siebers:

Disability studies does not treat disease or disability, hoping to cure or avoid them; it studies the social meanings, symbols and stigmas attached to disability identity and asks how they relate to enforced systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being.67

Similarly, in biomedical palliative care the mode of treatment shifts from cure to comfort. The criteria for admission into a palliative context will be elaborated upon in the second part of chapter four “I Have This Pain…” South Asian Perspectives on End-of-life Models: Pain

Management, Hospice Palliative Care and Medical Assistance in Dying, but it can be said that palliative care units allot special consideration and resources to the dying and their families, working hard to provide an attractive and calming environment and allowing flexible visitation.

Despite this attention given to the dying, palliative care staff often are seen as overbearing in their pride as experts in care for the dying. Many nurses have a sort of pre-retirement by moving to the less busy environment of palliative care (jokingly referred to as “going out to pasture”) and their long history of patient care and need for a more subdued environment might account for

66 Kumar 2005 67 Siebers 2008: 3

28 some over-sedation of new admissions. This will also be covered in chapter four but, put simply, is the unnecessary “snowing” of patients with analgesia: patients that were previously conscious quickly moving into a state of unconsciousness upon arrival to palliative care from acute, critical or chronic care settings. Even more difficult is the care of the dying in settings that are less familiar with palliation, such as in critical care units such as emergency and the various types of intensive care. Here, rampant pressures of bed-spacing and the great expense of critical care resources disallow certain leisures found in palliative care, such as freedoms around visitation pre- and post-mortem. Additionally, systemically we see a chronic underfunding of both palliative care itself and training in both palliative care and death and dying care, both expected and unexpected, in contexts where EOL care is not the specialty. So, in my estimation, palliative care is paradoxically given simultaneously a superficial special concern by institutions and staff while also being stigmatized within its own ranks and systemically by policy-makers.

As with disability studies, I also aimed to approach the study of the dying by looking at the “the social meanings, symbols and stigmas attached to [the] identity”68 of the dying and their family. Several anthropologists of South Asia show the sick, elderly and dying as both stigmatized and marginalized. Cohen69 and Lamb70 discuss the marginalization of the aged, the former showing the nuances and added complications of dementia and the latter finding that marginalization occurs even at the hand of the loved ones of the aged. Barret71 investigates the stigma of physically marked illness but unlike the highly marked diseases of leprosy and leukoderma that are Barrett's foci, everyone necessarily suffers at some point from disease, aging, dying and death. As such, Cohen’s justification for gerontological studies involving the

68 Siebers 2008: 3 69 Cohen 2000 70 Lamb 2000 71 Barret 2008

29 elderly as the “other” is that it is merely a visit to the “land of the old” where each one of us will inevitably also live. The same could be said about the “land of the dying and bereaved”: as an ethnographer of the dying and their families, I visit this country for which I will eventually also gain citizenship when I care for dying loved ones and die myself.

It is not unreasonable to include the family of a dying person in the category of vulnerability: also stigmatized, they experience the mental and physical exhaustion of caring for their loved one, sensitively negotiating relations with those inside and outside the circle of care, suffering anticipatory and often having their financial resources depleted by the ordeal. And dying and death have become segregated from the rest of society. In Canada, the movement of the care for the dying from the home to the hospital in the 1930s brought with it both positive and negative implications, such as an increase in the support of the dying and their families but also a sharing of power in decision-making and the potential for a third-party such as the biomedical team muscling for their own way out of an ideological bent or convenience. This is a grave concern.

Dying people and their families are often set in opposition with health care professionals rather than presented as collaboration. I feel that it is important to give emphasis to successes in decision-making, not just conflicts that have led to litigation. This is not to deny power imbalances in decision-making but without mention of successful decision-making, where authority is shared, it seems that mere recommendations for improvement could lack the depth, inspiration and influence that can result from examples of decision-making that have proven effective. In the meantime, it is often unclear where the decision-making power should lie in difficult cases. In Canada we have this conundrum:

It has been argued in the literature that, if the health care team believes requests for specific treatments by substitute decision-makers are not in the best interests of the

30

patient, the decision to withhold or withdraw treatment should rest with the health care providers. Others maintain that the decision should rest with the substitute decision- makers, or that conflicts between the health care team and the substitute decision-makers should be resolved by society (through the courts or some form of specialized tribunals). Statements from the courts or the legislatures will be needed to resolve the confusion and controversy in this area.72

Solutions to these difficulties are often driven by provincial legislation, but the existence of such standards does not eliminate struggles and disagreements since the law is understood and applied unevenly. Disputes over wealth distribution is one of the major contributing factors to unsettling the experience of the dying person, and disrupting family relationships. Palliative decision- making is another:

Family members of dying patients and healthcare providers find themselves locked in conflict; one side often feeling that they are fighting for their loved one’s wishes and interests and the other side often feeling that they are fighting for the patient’s interests and their own professional integrity. Litigation often seems the only route for conflict resolution and yet it is deeply corrosive of important relationships and distracts the participants from spending time with and caring for the patient. Furthermore, given the physical condition of most patients involved in such cases and given the time required for a case to work its way through the court system (especially for a matter of unsettled law), the results of litigation are often deeply unsatisfying for all involved.73

This lends strong urgency to the ongoing work in clarifying such processes, for the benefit of everyone involved in decision-making but with particular concern for the dying person whose time is most limited and whose state most fragile.

In India, with regard to judicial proceedings of malpractice suits against physicians in

India, both Kumar 74 and Nandimath 75 agree that a paternalistic ‘doctor-centric’ model of decision-making has predominated and Kumar points to the principles of ‘reasonableness’ and

‘best interest’ being exploited for the purpose of protecting physicians from liability. The two scholars also agree that a shift towards patient autonomy is evident in India due to an increase in

72 Schüklenk et al. 2011: 25 73 Schüklenk et al. 2011: 66 74 Kumar 2005 75 Nandimath 2009

31 malpractice suits and those that are ruled in the patient complainant’s favour. To autonomy I add that such a shift also increases the potential for more balanced collaborative decision-making.

Nandimath also makes it clear that SDMs are chosen without much discrimination, which leaves open the possibility for proximal rather than closely-tied relations being chosen out of convenience rather than determining SDMs based on who would most likely have the patient’s best interests at heart. This problem of inappropriate SDM designation is shared in Canada as well and is something I am called to consult on almost daily in my clinical ethics practice.

The potential for the use of advance directives is another area of substitute decision- making worth briefly mentioning. Advance directives are problematic in the Canadian context.

Their completion is generally neglected:

Studies consistently show that, although competent adults wish to be involved in making decisions about their health care, so that their preferences can be respected, and although they trust family members and others to be substitute decision-makers, they fail to complete advance directives or communicate their preferences for end-of-life care to family members or significant others.76

They are also very often ignored: “Research also indicates that advance directives, even if completed, are often not followed.”77 This is understandable given that advance directives are not legally binding in Canada but considered merely as guidance to SDMs and HCPs and thus leaving them dangerously open to disregard. Often the logic deployed in such cases is that if the person were competent now, in light of any changing factors since the directives were established, they would choose differently and that SDMs or HCPs separately or together know that the best interests of the patient are better served by their decisions and not those in accord with the advance directive. I have experienced this first-hand innumerable times in Toronto hospitals and, of course, SDM or HCP decisions may or may not be in the patient’s best interests

76 Schüklenk et al. 2011: 14 77 Schüklenk et al. 2011: 14

32 and may be so far from the patient’s expressed or implied wishes as to render the advance directive useless. Having relatively recently legalized the withdrawal of life-support under narrow circumstances and involving rigorous oversight, news sources indicate that the Supreme

Court of India will be soon be contemplating advance directives for such ceasing of aggressive medical management under circumstances of futility.78

Although I did not ask informants explicitly about such things as vulnerability and voluntariness in medical decision-making, these themes still appeared in their answers. For example, in chapter two “Shall We Tell the Patient?” Blocking Bad News in End-of-life and

Health Information Sharing, the vulnerability of the sick and dying patient was strongly considered by many to be a valid reason to be cautious with the sharing of sensitive medical information such as with stigmatizing or terminal diagnoses, perhaps even without patient input and thus, at times, prioritizing protection over autonomy. As well, in chapter three “Is it

Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian Ritual Practices of

Fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and

Medical Assistance in Dying (MAiD) Safeguards, the vulnerability of frail elderly Jains was discussed in the context of recent legal challenges to Jain EOL practices in which there is concern by detractors over coercion.

The Study

Context and Methodology

During the 2014-2015 academic year, I engaged in six months of field-work in India at four sites including the national capital of ; the capital of the north-western desert-

78 Mahapatra 2017. This is further discussed in Appendix C: Full Summary of Findings on Healthcare and End-of- life Decision-making Among Select Indian and Tibetan Religious Adherents under a sub-section of Personalized Decision-making at the End of Life entitled End-of-life Advance Care Planning.

33 state of , Jaipur; a town in the south-western coastal state of Kerala, Cochin; and ended in Dharamsala in the northern Himalayan state of Himachal Pradesh. I lived alone in

Jaipur, and in Delhi for the most part, and my wife (a nurse who since has both graduated and started as a Nurse Practitioner) lived with me in Kerala and Dharamsala, and for some of my time in Delhi. I also spent two months interviewing in the Greater Toronto Area, including

Mississauga where there is an abundance of South Asians. I held almost sixty interviews in total, with fifty in India and seven in Canada. I used word-of-mouth “snowball” recruitment starting with pre-existing networks in all of my field-sites except Cochin where I had never visited before, as well as visiting religious institutions, some advertising by outdoor postering, and some online networks through social media. These were all successful to some extent but networking, even when branching out from those who I did not know previously, was particularly useful. My attempts to post classified ads was met with failure every time I made an attempt mainly because foreign credit cards were not compatible with the newspaper platforms.

While recruiting, I offered an explanation of the study orally and also gave out a handout inviting participation, and asked contacts to forward my script to potentially interested parties.

Potential study candidates were assured that there was no need to participate, and that if they were willing to participate they could do so anonymously if they prefer, that audio recording was optional, and that they could change their minds and opt-out at any time before the completion of the study. Willing participants signed an informed consent form and were given the contact information of myself, my supervisor and the University of Toronto Research Ethics Board.

I had some initial concerns with my use of a computer as a possible obstacle between myself and interviewees, something discussed in anthropology since the advent of the tape- recorder. It ultimately did not seem to be any interference, and I transcribed in real-time and then

34 cleaned up transcripts post-interview using audio recordings of those who gave written consent. I had an image on my computer of Sri Saraswati Devi, the goddess of wisdom and music and who appears to a greater or lesser extent in each of the major , in order to block the light coming from the brand logo on the top of the computer. Similarly, I had a Saraswati image on contact cards I had made in Delhi. Both, unintentionally, served as a topic of conversation but with the cards, I was surprised at how often this made for assumptions of religious identity. Even one of my former classmates at the Institute of Buddhist Dialectics, upon seeing one such card, asked if I had since become a Hindu after leaving India! I will also note that between myself and each interviewee were both my computer and two different digital recorders, which ensured a back-up recording. Many informants spoke while also using their hands for emphasis, and some actually touched or accidentally hit one of the three devices. As one who also uses my hands when I talk, I was amused by this but often had to check that the recorders were still running.

Interviews took place in spaces chosen by the informants and included public spaces, such as local restaurants, or the homes or hotel rooms of participants according to their preferences. I intended to ask for consent to attend and observe any religious or cultural events that might have themes related to the study topics. I thought, with permission and a poster indicating my being a researcher, to both to observe and participate (as with group song or dance) and ask about the implicit and explicit meaning-making arising from such performances.

Alas, although my wife and I attended some events such as public teachings by His Holiness the

Dalai Lama in both Sankisa79 and Dharamsala, and kathaka dancing and sitar recitals in Cochin, there were no events where such themes as health, illness and death were known to be featured in advance. I attended any event merely as an individual and not as a researcher.

79 A minor Buddhist pilgrimage location in Uttar Pradesh which marks the spot where it is held that the Buddha descended from Tushita pure land after teaching his mother, Maharani Mahamaya Devi, who passed away when Prince Siddhartha was still quite young.

35

With a focus on religious adherents, I endeavoured to engage both lay-people and monastics, as other anthropologists of Asian Religions have done,80 but, as it turned out, only two monastics were recruited in India, although there were also some former Buddhist monastics. Of the fifty interviewees, eight were South Asian females, one identified as female third gender, and two other females informants were visiting foreign HCPs.

For non-HCP interviews, I utilized a questionnaire with an enormous one hundred and eighteen questions, and for HCPs many of the questions were doubled to account for the clinician’s perspective and their thoughts on their patients proclivities. I also used a thirty-six question in-depth open interview. Most did the open interview but some did not do one of either the questionnaire or the open interview, depending on time constraints, interest and willingness on the part of study participants. The questionnaire was not validated but was based on several pre-existing questionnaires from which was made a unique question set for this project. The order of the topic subdivisions of the questionnaires changed based on informant feedback and also from suggestions from my wife who observed two interviews with females, one a Christian nun, with the permission of the informants. The main shift was to position the sections in an order that broached increasingly sensitive topics, such as those having to do with death and dying, later in the interview to be more sensitive to informant comfort. One lone informant withdrew from the study. They were recruited by their mother who described the project to them as having to do with religion. I then described the project in full in person before we commenced, as I did as a matter of course for each interview. However, during the interview they refused to answer any questions related to health and disease and quickly asked to no longer participate. Thematic saturation, after which no new themes would be produced, from interview

80 Such as Langer 2007 and Terwiel 1994

36 dialogue was reached for each major cohort consisting of those belonging to the ancient Indic religious traditions.81

As mentioned earlier, the project is a combination of ethnography and textual analysis, which includes both scriptural and legal texts and commentaries, as well as a small amount of media analysis. I align with the definition of ethnography by Field and Morse as “a generalized approach to developing concepts to understand human behavior from the emic point of view,”82 the emic perspective being that of an insider to a group.83 As physician-scholar Mol states,

“ethnography…is informed by my own observations and by attending primarily to the words of another group of lay ethnographers: medical professionals.”84 In addition to religious adherent cohorts, like Mol I also engaged with healthcare professionals.

The ways in which I attempted collaboration during interviews was to ask each interviewee how they might change the structure and content of interviews, if at all, and whether

81 Cohorts from the ancient Indic religious traditions had between ten and twelve participants for each (10-12). Since the questionnaires produced an abundance of statistical data as well, sometimes these cohorts were subdivided for comparison and at other times collapsed to provide another perspective with more statistical power. HCPs grouped together had ten participants (10) and at times were aggregated to compare to aggregated non-HCP statistical data. The Sikh cohort, however, only had four informants (4) and Indians belonging to the Semitic religions on their own were also too few to have much statistical power, although treating them as a clustered group of ten which includes them all (10), or all monotheists together as a group of fourteen (14), would strengthen the power. That said, when the monotheistic data was incorporated, it was not treated distinctly but rather added to aggregated non-HCP religious informant data. 82 Pellatt 2003: 29 83 As will become clear, even in this very chapter, it is crucially important to me for the voices of the informants that participated in this study to be heard clearly and in their own words as much as possible. In fact, before starting this study and out of both circumstance and deep interest, I started to develop a similar project but instead involving a community of Pacific Coastal First Nations. It happened that while preparing for one of my language exams and my comprehensive exams I was living with my wife on a remote reservation for six months. In the process of community leadership consultation and drafting an ethics protocol, I came to learn of the rigorous requirements of research involving Aboriginals in Canada. As vulnerable people who have been subjected to the whims and harms of anthropologists in the past, the Tri-Council Policy Statement (TCPS, Government of Canada 2014) which outlines the standards for research involving human subjects in Canada requires that such groups are both collaborators and owners of the research. Not only this but the TCPS makes it an imperative to involve Elders and Knowledge Holders when working with Indigenous communities. We left the small fishing village earlier than anticipated and before interviews began, but working with some of the Elders and research liaisons on the Band Council deeply influenced my views and approach to research in the field. Although I was not working with vulnerable groups in India, I still endeavored to see the study informants as collaborators in the research as well in its subsequent dissemination. This goes for not only non-HCPs but also HCPs, whose experiences and insights I was also keen to explore. 84 Mol 2002: 26

37 they would want to see the results of the study. In the post-doctorate phase, I also plan to connect again with my informants to not only share the manuscript but also to ask them how they think the study might best be shared in India.

To start, capturing and reflecting informant voices was done using grounded theory for coding the interview data in order to extract themes, which in general is an approach which allows the data to speak for itself. Sociologists Corbin and Strauss state that “[t]he grounding of concepts in the reality of the data, is what gives this method its theory-observation congruence or compatibility”85 in a “research process to capture all potentially relevant aspects as soon as they are perceived.”86 They further state that

[e]very concept brought into the study or discovered in the research process is at first considered provisional. It earns its way into the theory by repeatedly being present in each interview, document, observation, in one form or another, or by being significantly absent (it should be there but isn’t, thus we ask why).87

I used this approach both for coding interview transcripts as well as in analyzing the statistical data, giving ranked priority to more common themes in the prose and then displaying such thematic tendencies graphically. Since those with “differing epistemological positions…will be drawn to different methodologies and different variants of the same methodology,”88 it is important to place myself with regard to a social theory that I am inclined towards in my disposition and approach to this research, which would be the social constructionism of the symbolic interactionism from which grounded theory arose. 89 According to Sociology

Professor Mooney, the broader category of

[s]ymbolic interactionism reflects the micro-sociological perspective,…concerned with the social psychological dynamics of individuals interacting in small groups…and was

85 Corbin/Strauss 1990: 420 86 Corbin/Strauss 1990: 419 87 Corbin/Strauss 1990: 420 88 Carter/Little 2007:1320 89 Corbin/Strauss 1990: 419

38

largely influenced by the work of early sociologists and philosophers... Symbolic interactionism emphasizes that human behavior is influenced by definitions and meanings that are created and maintained through symbolic interaction with others.90

This harkens back to the earlier discussion of what I am referring to as micro-level transient neocultures in medical decision-making in which, as with larger groups, Prof. Mooney states that there is a “network of interlocking roles” in which “social order is constructed through interaction as individuals.”91 Also from Mooney, since individuals, such as those who are players in medical decision-making processes, “are interpretive and interactive…they are constantly changing as their ‘social beings’ emerge and are molded by changing circumstances.”92 I spoke earlier about the interdependence of patient and physician roles, but additionally in the healthcare context the patient trajectory is one of constantly changing circumstances with new information from diagnostics, varying interpretations from providers, changing opinions of patients and their loved-ones, and patient health-status improvement or decline. Mooney gives labeling as another key factor in symbolic interactionism:93

Sociologist W.I. Thomas (1931-1966) emphasized the importance of definitions and meanings in social behavior and its consequences. He suggested that humans respond to their definition of a situation rather than to the objective situation itself. Hence Thomas noted that situations that we define as real become real in their consequences.94

From the delivery and reception of sensitive medical information, to a change of status from active medical management to comfort measures, and so on, the ways in which patients, their families and providers respond to the framing of circumstances in hospital settings is a key feature of what informants had to say in every chapter contained herein. Indeed, “an

90 Mooney et al. 2013: 12 91 Mooney et al. 2013: 13 92 Mooney et al. 2013: 13 93 Mooney et al. 2013: 13 94 Mooney et al. 2013: 12

39 anthropological study of health and the occurrence and means of coping with disease or illness can involve one deeply in the manner in which people perceive their world.”95

Grounded theory was also employed as a precursor to textual analysis of scriptures. This was a conscious methodological shift for me since, initially, I thought to ask informants about certain texts that I considered significant or which appeared as significant in other studies, but abandoned this approach. As anticipated, some informants gave mention to particular religious texts that were influential to them in their framing of death and dying, as has been found by other researchers such as Justice96 in his study of the bhavans (hospices) in Varanasi, and Murata97 in a study of death and dying among Hindus in the USA. As with these anthropologists, my informants’ took the lead as to the particular texts of significance for themselves.

Legal textual analysis was not preceded by grounded theory. Since determining who is to be involved in healthcare and EOL decision-making was a critical part of this investigation, after exiting the field I actively sought out legislative documents that might direct Indian health care consent determination, such as the Indian Constitution and the Professional Conduct, Etiquette and Ethics Regulations of the Medical Council of India, as well as legal commentary which was crucial in determining such things as the benchmarks for institutional respect for patient autonomy and self-determination.98 I also hoped they would clarify such things as the legal ranking of possible SDMs for patients who become incapable of making autonomous decisions or engage in collaborative decision-making, as in some cases featuring patients with cognitive interferences or who are comatose. Since “the common law application of consent is not fully

95 Sharma et al. 2006: 2 96 Justice 1997 97 Murata 2010 98 Nandimath 2009

40 developed in India, although the Indian courts have often referred to these principles,”99 other documents such as the Indian Contract Act and the were also engaged with to compare some legislative standards that broach consent (and undue influence) with how consent is understood by informants to be obtained in Indian hospitals.

The last group of texts that was employed to some extent was that found in newsprint.

Again, grounded theory was not used at all times since I would typically start by scanning local daily newspapers in hardcopy and digital formats, but at times would also be directed to an issue or newspaper by informants. Relevant news articles helped glean the ways this medium influences public opinion by comparing newspaper views with informant positions, keeping in mind that such publications often have a philosophical or even a political bias. Two exemplary articles served as examples in advance of entering the field, both written for Toronto newspapers but one with content from India and the other focusing on Canada, and both having to do with voluntariness in hastening death. Mark Magnier’s “Speeding Up the Cycle of Life”100 discussed a practice in South India of families using “a local form of mercy killing known as thalaikoothal.”101 This article struck me as odd since this practice was framed by the author as a strange and dangerous activity by people in the exotic and mysterious East, when, in fact, some medical practices in Canada such as palliative sedation and Medical Assistance in Dying

(MAiD) are technically very similar to the reported “poisoning,” legal if done correctly and potentially illegal if not. The article’s approach to the issue could be a means of “othering” one of our own taboos. Sandra Martin’s “Kim’s Choice: A Death on Her Own Terms”102 traces the

99 Nandimath 2009 100 2013 101 A different article by the same author is featured in chapter three, “Is it Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian Ritual Fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards 102 2014

41 experiences of a person with a degenerative disease choosing to fast to death, as well as how this course of action affected her family. Some of the issues in this case, such as the particular symptoms that come with dehydration, are reminiscent of similar issues, and their proposed solutions, as found in the Jain practice of sallekhanā as is the framing of the practice as natural and reasonable, rather than suicidal. Newspapers offered a unique glimpse into contemporary issues in real-time during field-work by demonstrating how some people consider the state of affairs in a particular location, and how information can be filtered for certain purposes. They can even be contested sites where different people’s views compete for air-time and dominance.

Anthropologist Didier Fassin103 cites newspapers extensively in his ethnography on AIDS in

South Africa: he gives headlines, 104 quotes articles directly, 105 paraphrases articles 106 and editorials,107 and mentions occurrences of political administration mobilizing newspapers for their agendas.108 Newsprint can also be mined to trace the appearance of particular issues in the public sphere through time. These can serve as a potentially subversive means to supplement officially published doctrine by health care and governmental institutions. In this forum, as with the ‘mercy killing’ and fasting to death mentioned above, taboo subjects can be broached and the backstage may be revealed to some extent.

In the development phase I thought to use medical and nursing charting notes as a source of data that not only describes physical diagnostics and treatment regimes, but also potentially containing a wealth of other telling information such as psycho-social concerns and dynamics between patients, family and health care professionals which often appear. In her ethnography on

103 Fassin 2007 104 Fassin 2007: 10, 30 105 Fassin 2007: 41, 42, 49 106 Fassin 2007: 28 107 Fassin 2007: 46 108 Fassin 2007: 31

42 the health care trajectory of a Hmong child in the USA, Fadiman109 incorporates the charting notes written by one of the child’s primary physicians. Alas, this was not to be a hospital-based study and such texts were not used.

During the study’s early development I also had in mind some research questions having to do with information sharing that ended up not being asked directly of informants, such as these: When is the deception of a patient by the family and health care team, in not wanting the patient to know of their poor prognosis and imminent death, permissible, if ever? What about a voluntary ignorance of their condition at the request of the patient? Despite not asking directly about such blocking of bad news, the theme naturally appeared so abundantly in our conversations on healthcare and EOL decision-making that it warranted an entire chapter and is one that I have presented on multiple occasions both at conferences and in hospital. Some questions that arose in the study development phase were asked and provided much material, such as: What are the causes of health, illness and death? A selection of answers appear in

Appendix D and such a question was intended, in part, to demonstrate the similarities and differences between religious adherents and biomedical practitioners with regard to explanations of disease etiology. Although materialism abounds in biomedicine, with a prevalence of the

“cultural construct...[and] ‘belief’ (superstition?) that diseases are ‘real’ entities”110, I wondered if there could be some material etiology in the narratives of religious adherents, such as with humoural disease. I thought that this line of enquiry could also allow for an investigation of other culture-bound syndromes, but those not in the realm of biomedicine, such as black magic, spirit harm and possession. Such supernatural etiologies, as it turned out, did not appear much in interviews. Interviews took place in two countries, India and Canada, and would include Indians

109 1997 110 Lock 1998: 4

43 who had migrated and all Tibetan informants would necessarily be refugees with a mix of escapees and those born outside Tibet, so I thought to ask these questions: How does migration affect conceptions of health, disease and death? Does migration affect access to medical care and voluntariness in decision-making? I did end up asking only if migration affects access to healthcare services but informants shared very little except for some who spoke of language barriers potentially impeding access and care.

Brief Introduction to the Ancient Indic Religious Traditions

This section will serve as a brief introduction to the ancient dharmic traditions of India, particularly their commonalities in views and approaches to health and disease. The three major

Indic traditions of Buddhism, Hinduism and Jainism are referred by this Sanskrit term

“”111 despite the fact that it is translated differently depending on the context: as both

“doctrine” and “phenomena” in Buddhism, “duty” in Hinduism, and “religion” in both Buddhism and Jainism. Remembering that “Hinduism” is a fraught term that does not do justice to the great variety of traditions and views which might be given the label, the polytheistic beginnings of

Hinduism can be traced back to the Indus Valley Civilization which flourished from 5000 BCE to 2000 BCE and had a focus on the fertility goddess, and meets what Doniger calls “nomads in the Punjab”112 with a focus on elemental gods and the operation of the fire and seen by some as the composers of the earliest texts, the Vedas. The next major phase moving into classical Hinduism comes closer to the cusp of the first millennium with the great epics and the

śāstra113 genre of texts, prescriptive texts on the topics of the life-goals (or puruṣārtha114) with

111 Williams gives about twenty definitions for dharma, including what was mentioned above and law, justice, virtue, morality and nature (Williams 2008: 510). 112 Doniger 2009: 104 113 Translated from Sanskrit as a “precept,” “instruction,” “any manual or compendium of rules” and “scripture (Williams 2008: 1069).”

44 such texts having to do with religious duties, conduct and law (such as the Manusmṛti115), wealth

(such as the Arthaśāstra116), and sensuality (such as the Kāmasūtra117). The non-theistic traditions of Buddhism and Jainsim grew out of the heterodox śramaṇa 118 movement of wandering mendicants between the eight and fifth centuries BCE. Although it is not clear if they ever met, it is noteworthy that both of the enlightened founders, Buddha and , came from royalty and from the same north-Eastern region of India called Magadha at the time of mid-

500 BCE. Although first appearing in Hinduism, but with different applied meanings over time

(such as it initially referring to the proper treatment of animals when ritually slaughtered as per the Vedas), both the non-theistic traditions have a strong emphasis on non-violence (ahiṃsā119), but it could be said that the Jain practices are stricter in this regard and possibly in part because they consider the elements also to be living beings (jiva120). Jain monastics in general go to greater lengths to protect life, as indicated by monastic accouterment such as the broom or peacock feathers which are used to brush away insects and microscopic beings from their path and seat, and the muhapatti121 or face-mask (a cloth or card resembling a surgical mask but rectangular) used by only one of the two major sects (Śvetāmbara, or White-Clad, and not in the

114 Translated from Sanskrit as “any object of human pursuit,” “any one of the four objects or aims of existence (viz. kāma-,the gratification of desire; artha-,acquirement of wealth; dharma-,discharge of duty; mokṣa-, final emancipation),” and “human effort or exertion (Williams 2008: 637).” Some only give three puruṣārtha and exclude mokṣa (or liberation). 115 Manu is the author, and the text itself gives its title as “Manava Dharmasastra.” The text covers other topics as well, and there is much debate over the time of authorship. 116 This “book treating of practical life” also covers other subjects such as “political government (Williams 2008: 91).” It is said to be composed by Kauṭilīya, and although the date of authorship is contested it is given by some as the end of the fourth century BCE (Kangle 1986: 63). 117 Composed by Vātsyāyana in the third century CE (Doniger/Sudhir 2002: xi). This text is much misunderstood and rather than merely being concerned with sexual positions, “it is a book about the art of living – about finding a partner, maintaining power in a marriage, committing adultery, living as or with a courtesan, using drugs…(Doniger/Sudhir 2002: xi)” and is, at times, quite empowering to women. 118 Translated from Sanskrit as “one who performs acts of mortification or austerity, an ascetic, monk, devotee, religious mendicant (Williams 2008: 1096).” 119 Sanskrit for “harmlessness (Williams 2008: 125).” 120 Williams gives at least twenty definitions from the Sanskrit, including “any living being (Williams 2008: 422).” 121 I have been unable to locate a literal translation.

45

Digambara or Sky-Clad whose male monastics live naked) and for both the prevention of ingesting small beings and also to not alter the temperature of the air surrounding the mouth as it would kill air-beings (meaning the living element of air as distinct from insects and microorganisms). This is not to say that Buddhism does not strongly encourage and instill practices to protect life. For example, monastics in both traditions are meant to strain water before drinking, and the rainy season pauses any itinerancy in the annual cycle in part to prevent trampling the many beings that come out during that time of year. All three of the major Indic religions share the concept of karma,122 literally meaning “action” in Sanskrit, and generally referring to the law of cause and effect as connected to consciousness with the main premise being that actions bring results of the same nature. There is a lot of variation even within the traditions themselves, but the main difference between the theistic and non-theistic traditions has to do with some aspects of intercession from the gods (male deva123 and female devi124) intersecting with karmic processes in some Hindu sources. Between the two non-theistic karmic theories, it can be said that the differences are related to the phenomenological way in which karma is accumulated. Since for the majority of the Buddhist systems (save perhaps the

Pudgalavādins125) there is no inherently existing self or soul (ātman126 in Sanskrit), karma is said to accumulate on the consciousness stream in the form of imprints or seeds. There is some overlap between some Buddhist schools of thought and Jainism in considering karma to be in the

122 Williams gives karman for this term and among the twelve meanings, offers “act, action, performance, business,” “product, result, effect” and “former act as leading to inevitable results, fate (as the certain consequence of acts in a previous life) (Williams 2008: 258).” 123 Sanskrit for a god, male gender. 124 Sanskrit for a goddess, female gender. 125 This system of thought, initially translated into English by my first professor in Buddhist studies Prof. Leonard Priestly, held that although there is no inherently existent self or ātman, there does exist a person hence the use of “” which can mean “personal entity (Williams 2008: 633),” and “vāda” for “doctrine (Williams 2008: 939).” Their logic was on the basis of some statements attributed to the Buddha which speak of a “person” who is burdened by having aggregates (form, feeling, thought, choice, consciousness), accumulates karma, transmigrates and eventually experiences liberation. 126 Sanskrit for “the individual soul, self, abstract individual (Williams 2008: 135).”

46 form of subtle matter, but the Jains alone see karma as accumulating on the soul and thereby weighing it down and preventing release from the cycle of existence (saṃsāra127). All actions accumulate this karma and thereby accounts for the logic behind ceasing all activities through fasting and immobilization at the end of life, which both prevents the accumulation (or influx) of new (saṃvara128) and purifies by removing already adhered karmas (nirjarā129). Another overlap between the traditions has to do with rebirth, which I hold as conceptually distinct from as the willful controlled movement between lives rather than as determined by karma, in that Jains generally consider rebirth to be instantaneous after the moment of death which some Southern Buddhist schools also accept. The in-between phase between death and rebirth appears in Indian texts as well, and was not necessarily a Tibetan innovation although there is a major focus on this phase in those traditions as indicated by the Tibetan Book of the

Dead (Bardo Thodol130 in Tibetan). There is a shared Indic cosmology of multiple realms of existence, and time being cyclical and endless in both directions. All three of the major Indic traditions also feature some amount of mendicancy, be it informal or formal (belonging to a lineage or not), solitary and/or community-based.

Study informants had many things to say about health and disease, and a selection of these thoughts appears in Appendix D. It can be said, though, that a humoural view of health and disease, and some degree of reliance on traditional medicine and healing, are prominent in all

127 Sanskrit for “circuit of mundane existence, transmigration (Williams 2008).” 128 Translated from Sanskrit as “shutting out the external world (with -s one of the 7 or 9 -s) (Williams 2008: 1116),” tattva being a “principle (Williams 2008: 432).” 129 Another Jain tattva, meaning “sloughing off” and interestingly/similarly, nirjarāyu means a “(snake) that has cast its skin (Williams 2008: 541).” 130 Wylie: bar do thos grol. The text is “widely known as the Tibetan Book of the Dead (Yeshe 2011)” but the Tibetan literally means “[l]iberation through [h]earing in the [b]ardo (Ives Waldo 2011)” with bardo meaning “in- between” lives during the transmigration process. Another translator gives “guide instructions for the (Valby 2011)” since the text, written by the second Indian Buddhist master to transmit Buddhism from India to Tibet, Guru Padmasambhava from the eight century CE, is recited to help the deceased better navigate between lives.

47

Indic systems. The balance of wind, bile and phlegm maintains health, and imbalance causes disease. All three of the major Indic religions have elements of prescriptive death preparation.

This is especially seen in the non-theistic traditions with the death and decay contemplations in

Buddhist texts and practice, even sometimes involving the contemplation of mentally or by way of directly observing bodies in charnel grounds, and Jain fasting and meditation practices that are specifically aimed at being ready for the final fast, immobilization and meditation at the end of life (sallekhanā-santhara-samadhimarana). Some amount of divination for healthcare decision-making, and otherwise, appears in all three but in this study was only mentioned by a Hindu informant and some Buddhist Tibetans and is be elaborated upon in Appendix C. Lastly, each Indic tradition contains some conceptions of supramundane disease etiology, such as spirit harm, black magic, ghostly interferences and possession. In this study, such causes of disease appeared much less than anticipated and again only by a few from the Hindu and Tibetan Buddhist traditions.

Study Outline131

Three core chapters will be dedicated to exploring key themes that arose from the interviews in India, and each contains in its title a short quote relevant to the chapter topic from a study participant. Chapter two is entitled “Shall We Tell the Patient?” Blocking Bad News in

End-of-life and Health Information Sharing. It starts in part one with ethnographic data on the withholding of difficult medical information such as terminal diagnoses and imminent death

131 I took Rabgay’s 2004 anthropology dissertation on the gendered experience of Tibetan women in diaspora as a precedent for a doctoral study divided equally between India and Canada. My thought was that it would be useful to have data from both countries so that the results can produce helpful insights, and possible recommendations and guidelines, for care providers with South Asian clients in both countries. Although the study was intended to be a transnational one, with interviews and data generated from adherents both from India and Canada and there being some interjurisdictional cross-talk in my commentary, only the Indian data is presented in this study as that data is itself voluminous. I hope to produce more articles from the Canadian data, but comparing between adherents in the two countries would have further ballooned an already very large project.

48 prognoses, and also explores the receiving of difficult medical information with regard to the perceived detriments and benefits to patients, and the perceived detriments to families. Part two is analytical and presents discussions on the legal stance on autonomy and consent in India and the withholding of bad medical news among non-Asian cultural and religious groups. The chapter also explores some studies on sharing of sensitive information from the fields of medicine, bioethics and moral philosophy. Next is an examination of some intersections of Indic and non-Indic theory, such as between Foucault’s use of the concept of “avowal” and Indic mantra, and ethnographer Mol’s use of “co-production” and Indic interdependence. Lastly will be a section on North American regulatory documents that address the sharing of sensitive medical information before concluding with informant-driven strategies for the management of medical information sharing.

Chapter three is entitled “Is it Suicide?” - Ritualized and Medicalized End-of-life

Practices: Indian and Tibetan Ritual Practices of Fasting and Immobilization at the End-of-life

(Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards and will proceed in three parts. Part one will focus on Jain voluntary fasting and immobilization at the end-of-life (sallekhanā in Sanskrit) and is subdivided into sections on informant views of sallekhanā, key contemporary moments for sallekhanā by way of public discourse and legal milestones, and safeguards and oversight which is concerned with voluntariness, mental capacity and the provision of sufficient information. Further are sections on the foregoing of life- sustaining measures, and hospice palliative care with its shift in focus from curing to comfort through pain and symptom management. The last section will consider the Rule of Double-Effect

(RDE), in particular part two of the rule - that the good effect and not the evil effect be intended.

49

Part two of the chapter will delve into Buddhist voluntary fasting and immobilization at the end- of-life (tukdam in Tibetan) through both expert and informant views of tukdam, and Buddhist discipline texts on killing versus withdrawal of medical treatment. A third part will compare sallekhanā and tukdam as social phenomena with sections on the measurability of unusual physical signs, permission and publicity, and terminology and the Jain community being an indigenous minority religious tradition.

Chapter four is entitled “I Have This Pain…” - End-of-life Models of Care: Indian and

Tibetan Adherent Perspectives on Pain Management, Hospice Palliative Care and Medical

Assistance in Dying (MAiD). Part one probes the topic of pain management and part two that of hospice palliative care, and both include informant perspectives and analysis. Part three examines MAiD and in addition to informant perspectives will include collateral religious perspectives from the three major Indic religious traditions using as its sources both newspaper media and religious texts.

The core chapters each have data drawn from both questionnaire and open interview questions, and the relevant questions are presented in full in Appendix A. As well, each chapter theme has statistical data drawn also from questionnaire questions using a Likert Scale and the figures featuring graphs and charts are contained within Appendix B. Appendix C was to be another core chapter but because of its great length and very different writing style, it has been made into grey literature which can be of potential use to those who want greater detail on the topic of medical decision-making from the study informants. Part one and two focus respectively on healthcare and end-of-life decision-making, both subdivided into sections on processes and involved players. Part three explores personalized decision-making at the end of life and is subdivided into four sections on personal preferences: who would act as substitute decision

50 makers, advance care planning, social support, and preferences for care. Part four of Appendix C explores the impact of religion on medical and end-of-life decision-making, with three sections on how religion might influence the person or patient themselves, family members and healthcare professionals respectively in their approaches to decision-making.

The conclusion, “Mostly a Collaboration.” Healthcare and End-of-life Decision- making Among Indian and Tibetan Religious Adherents, will offer brief highlights from the large summary of findings in Appendix C, as well as provide general findings and recommendations from the core chapters.

Lastly, Appendix D defines key terms from informant perspectives (such as health, illness, death and religion) and Appendix E offers a list of findings and recommendations.

51

CHAPTER 2: “Shall We Tell the Patient?” Blocking Bad News in End-of-life and Health Information Sharing

Introduction

Summary

This chapter begins with some brief case-based background on attempts to restrict sensitive medical information by patient families from my experience in local clinical settings.

By “sensitive” or “difficult” medical information I mean such things as terminal diagnoses and imminent death prognoses, often thought of as bad news. Next, part one of this chapter will explore informant perspectives on the sharing or withholding of difficult medical information which includes the perceived detriments to patients and families, and potential benefits to patients, upon receiving such information.

Part two132 will analyze medical information sharing first by way of legal commentary which will assist in clarifying autonomy and consent in contemporary India, followed by engagement with literature which discusses the withholding of bad news in healthcare among non-Asian cultural and religious groups, and both medical studies and North American regulatory documents that address the sharing of sensitive healthcare information. A brief section will suggest some intersections between Indic and non-Indic theory by way of Foucault’s use of the concept of “avowal” as it relates to Indic mantra, and Mol’s use of “co-production” as it relates to the Indic concept of interdependence. The chapter concludes with informant-driven strategies for the management of healthcare information sharing.

132 Excerpts of questions used in the questionnaires covering such topics as truth-telling, advance care planning, and being informed by healthcare teams can be found in Appendix A, and statistical data (graphs and analysis) generated from the questionnaires can be found in Appendix B.

52

Background

It was a case in a Toronto hospital decades ago that first piqued my interest in the topic of healthcare information sharing, particularly the blocking of bad news in the form of a terminal diagnosis, poor prognosis or likelihood of imminent demise. I was a relatively new caregiver on a large Progressive Care Unit which was a combination of internal medicine, oncology, gerontology, stroke and HIV/AIDS specialties. The team was taking care of a Christian Indian man133 now living in Canada and having AIDS, meaning he had a defining diagnosis which moves the person from merely having the HIV virus to having an illness that demonstrates that they have become severely immuno-compromised, such as pneumonia, to name but one of many.

The patient had seroconverted after a blood transfusion during a surgical procedure in India.

Subsequently, the wife also became HIV positive, as well as one of their three children being born with the virus. The fellow was severely contracted and could not verbalize other than by moaning. The team was told that under no circumstances should the extended family be told of the patient’s diagnosis, nor of the HIV positive status of the wife and child. This is not unusual, and some patients themselves even request for no health information to be passed onto their closest family members, known as a “lock-box.”

In fact, the sharing of personal health information (PHI) with anyone outside of the circle of care, which includes only the patient, substitute decision-maker(s) (SDMs) and members of the health care team(s) caring for the patient, is prohibited. Such is mandated by both Ontario provincial legislation, the Personal Health Information Privacy Act (PHIPA),134 and institutional policies to protect both privacy and confidentiality (distinguished as privacy having to do with access to the person and confidentiality having to do with access to information about the

133 Case details have been de-identified and altered to protect the confidentiality of the patient and family. 134 Government of Ontario, 2004, S.O. 2004, c. 3, Sched. A

53 person). In this case, however, we were told to tell other inquisitive family members that the patient had , which was in fact the case but not the whole story. One common form of cancer that serves as an AIDS defining diagnosis is kaposi sarcoma, malignant skin lesions of the type that the character that Tom Hanks played in the film “Philadelphia” developed and was the visible sign that led to his workplace knowing he was sick and subsequently firing him inappropriately. Giving a partial truth was one thing, but the team suffered great moral distress from the fact that the child was not receiving treatment. At the time, the medication cocktails had just begun to start working and many HIV positive people who were previously preparing for death were suddenly getting better. HIV was becoming a chronically manageable disease rather than a terminal illness. One day they were wrapping up their affairs, the next thinking about whether they could get their old job back so they could return to work. This was appropriately called the “.” The patient, wife and child in our case all could receive antiretrovirals to almost entirely eliminate the negative impact of the virus. In fact, there is prophylactic treatment for HIV positive pregnant mothers that can significantly reduce the likelihood of a child being born with HIV.

The case was so long ago, and I was so new to healthcare, that I do not know what the status of the patient’s capacity was, what HIV treatments he was receiving and what the family concerns were with regard to the diagnoses. Even if the nonverbal patient had decisional capacity, it is very likely that it was not the patient but the wife who gave the team the instructions to not pass any information to the extended family, since this is a rather sophisticated request to express. One can imagine that there was fear of stigma and potential social ostracization of their family based on the type of infectious disease, and such a valid or imagined fear is something not unique to South Asians.

54

But why would parents choose to not treat their child for a treatable disease? Resistance to and suspicion of biomedicine and its associated professionals is a topic that will be addressed in a subsequent chapter on the intersections and interactions between traditional medicine and biomedicine in Indian healthcare systems, but in this case the patient had been brought to hospital and was receiving at least some interventions. This is some sign of a valuation of biomedicine by this family. Another possibility is that the treatment itself could potentially reveal a person’s diagnosis. If the child received oral antiretrovirals, and someone in the household saw the name of the drug on the bottle, it would be easy to connect the particular drug with the particular illness. This alerts us to the great importance of protecting medication names, as it is also PHI, and is something that, in my experience, we do not do a good enough job with in our region. We hang semi-opaque bags over intravenous medication bags to prevent photosensitive substances from being compromised, but we do not make much effort to cover the names of medications hung at the bedside to prevent them from being in full view of visitors. As with the increasing efforts to block nursing station boards which contain patient names and other information from the view of visitors, by such means as rolling boards that can be turned around and even inserts that make the information only viewable from certain directions, we need to have creative means to obscure medication names from view. But preceding this must be a vested interest in the importance of protecting all health information based on a rigorous conception of the circle-of-care which can only be altered with the consent of the patient themselves, or SDMs on the basis of what they know or think the patient would want. This is an area that I struggle with in an ongoing way in the clinical context as an ethicist.

But the case that started it all for me is one that has to do with blocking medical information in an outward direction. This chapter will address this too, such as with patients who

55 would not want their family to know something, but mainly will be concerned with the blocking difficult medical information in an inward direction, meaning withholding of bad news in the form of a terminal diagnosis, poor prognosis or imminent demise from the patient themselves.

My own interest in the topic aside, this type of information blocking also arose as a major data theme in the interviews I held during my field-work. It was something so present in our conversations that it was the first chapter I started working on for this manuscript and its production was also to be the required writing project for the fellowship in clinical and organizational bioethics that I undertook in what was originally planned to have been my fifth doctoral year. Although I was on leave from the program for that year, since the program was full-time and quite immersive, the research writing requirement was a boon which ensured that I would not be separated from my data too much and could continue dissertating to some extent.

Alas, after many months of theoretical ground work for this chapter, I received a request from the International School of Jain Studies (ISJS) to speak in India at two colloquia on the clinical ethics implications of Jain and Buddhist fasting at the end of life and this led to my setting this chapter aside while I worked on another chapter on the intersection of religion, medicine and the law in South Asian ritual death practices. After the fellowship, and in preparation for a York

University conference “Crossing Boundaries” on death and morbidity, this chapter began to take shape.

The focus of this chapter will be on specific South Asian cultural and religious groups, but the blocking of bad news in healthcare is certainly not restricted to them as it is a cross- cultural phenomenon. In a recent clinical ethics case, a Greek orthodox family was asking the healthcare team to, in the words of team-members, “lie to the patient” with regard to stopping a

56 life-sustaining treatment.135 This was what triggered the consult with myself. The case was quite complex, as the patient was quite young and with some amount of developmental delay that interfered with capacity. The parents also were in disagreement as to how to approach the plan of care, with one ready to pursure palliatve care and the other not, and one clearly dominated the other. The patient would occasionally state that she wanted to stop dialysis, upon which she was dependent and needed to have most days of the week, but then would not disagree with going to dialysis appointments.

When I was to first meet the patient, one of the parents asked to speak to me alone but I informed them that I needed to get the patient’s permission to talk to them first. They were not happy with this and eventually relented but with the caveat that I was not to tell the patient anything so as to not upset her. I reassured them that I was not there to pass on any clinical information. I eventually got permission to meet with the parents, after a very caustic conversation with the patient. One of the parents asked if we could just simply stop the dialysis, not tell the patient and allow her to just “slip away.” I told the parent that I understood that they wanted the information related to care to be handled delicately so as to minimize distress, and that the team would do their best to facilitate this, but that truthfulness is a core principle in healthcare ethics and necessary for the patient to be able to make a fully informed choice. Even without the capacity to make that particular treatment decision, the patient’s incapable wish would be relevant. By “incapable wishes” I mean the wishes of the person who is unable to either understand the information relevant to the decision or appreciate the consequences of a decision or lack of decision (the application of the information to their personal circumstances), which is how decisional capacity is defined in the legislation. Such incapable wishes can be in the form of mere agreement or acquiescence, or “assent” (rather than “consent”) as it is often

135 Again, case details have been de-identified and altered to protect the confidentiality of the patient and family.

57 called in pediatric contexts but applying equally in adult healthcare and even animal research,136 or mere disagreement which we could call “dissent.” Since consent requires decisional capacity, for those lacking capacity for a particular decision assent can sometimes be sought and can either be expressed by some form of communication or implied by body language. Examples would include a person deemed incapable to make a decision with regard to life-saving surgery saying

“I don’t want surgery,” or a person incapable with regard to diagnostics pulling their arm away when a nurse tries to draw blood.

As per Ontario’s Health Care Consent Act (HCCA),137 incapable wishes are listed just after values and beliefs within a series of requirements under “best interests,” followed by medical best interests such as whether the treatment will improve their condition or slow deterioration and so on. It is not made clear in the Act if incapable wishes being placed above clinical considerations implies a higher ranking, but in my reading it is an indication of prioritization to some extent by starting with criteria that place the patient first, even before medical considerations. The legislation also states that incapable wishes do not legally need to be followed by SDMs but that they need to be taken into consideration as they deliberate a treatment decision. This aspect of best interests indeed is often a blind spot among HCPs, and is something that I need to constantly remind about and provide education as to how one is to consider incapable wishes if they are both relevant and not something SDMs are bound to. It is not easy to know how to apply incapable wishes, such as how much weight they are to be given in decision-making, and unfortunately the default among healthcare teams and families all too often is to ignore the patient’s voice if they have some incapacity. To assist with this problem and to encourage maximizing patient involvement and participation, incapable wishes and assent

136 Kantin 2015 137 Government of Ontario, 1996.

58 are current topics of research for me in my work context and will result in presentations at many of the hospitals we are contracted to.

In the case of the young Greek patient, the response from the parent was that as the patient’s parents, it was “their right” to withhold information as they see fit. This meeting was also difficult and mainly was to establish their positions, gain some collateral information as to the patient’s thoughts and behaviours towards the treatment in question, and support them at a difficult time rather than to push against their suggested course of treatment withdrawal and information omission. The most responsible provider (MRP)138 for the patient thought that the patient just might well have the capacity to refuse this treatment, in part meaning that she appreciated that it would cause her death. In fact, she stated as much to me during our meeting.

We decided to see how stable the wish was by allowing the patient the opportunity to refuse the treatment multiple times. In the end, the treatment refusal decision process was made moot since quite soon after the consult, the patient pulled out all of their various intravenous (IV) lines which were providing medication, hydration and nutritional support, and they passed away. In this way, she made her own choice regarding treatment.

One final relevant clinical case that I will mention involved a very elderly man who also happened to be Greek, and who upon my entry into the case had a new diagnosis of cancer. Their son, who also had many health issues, explicitly stated that he was making decisions with regard to their parent because they were very attached to them and did not want them to die. They also did not want their parent to know their diagnosis, which was grim. A language barrier made getting at the patient’s wishes difficult, and often under such conditions healthcare teams overly rely on family members even if not activated as SDMs which only occurs with the loss of

138 This is often given as “most responsible physician” but because Nurse Practitioners are also able to be primary healthcare providers, the term has been changed to reflect this.

59

Box #1 decisional capacity. With the help of an Woman kills self in hospital as mom die Sunday Times - Times of India interpreter, we met with the patient without Sanjay Yadav Nov. 9, 2014 the family member present, which is a helpful Gurgaron: A 28-year-old PhD student from Ghaziabad’s Muradnagar committed suicide by approach at times when family might be an jumping from the 15th floor terrace of a hospital here on Saturday after her mother, admitted in its interference. The patient had capacity with cardio ward since October 17, died, reports Sanjay Yadav. regard to treatment specific to their particular Police said Neha Gupta couldn’t bear the shock of mother Sunita’s death and took her own life. condition. At an earlier moment in their Eyewitnesses saw her joining her hands in prayer before jumping. She crashed into he extended healthcare trajectory, with a first onset of roof of the fourth floor and died on the spot. No was found. cancer, the patient decided they did want to

Woman ends life at Ggn hospital after mother know their diagnosis. At the time of our dies Gurgaron: A 28-year-old woman jumped to meeting, however, they did not want to know death from the 15th floor of a multi-specialty hospital here on Saturday, after her mother, who was admitted in the cardio ward, assed away in the new diagnosis (which was that the the afternoon. Police say the girl was a PhD student and lived in Muradnagar, Ghariabad. Her malignancy had spread to their lungs) and mother, Sunita Gupta, 65, had been admitted in hospital since October 17, after she suffered a wanted to defer decision-making to their heart attack. She was undergoing treatment for clogged arteries. child. Deferring decision-making by a capable

Police suspect the 28-year-old could not bear person is a debated topic, but the main thing the shock of her mother’s death. Eyewitnesses said she prayed before jumping off the roof. to note here is that the choice to receive a According to sources, on Saturday, she complained of severe pain while passing stool. diagnosis or not was given to the patient, and There was a trace of blood in her urine as well. She passed away at 1.40 pm in the cardio ward at different times and with different diagnoses on the 15th floor of the hospital. they chose differently for themselves.

60

Box #1a The above cases show the perennial (Yadav Nov. 9, 2014 article continued) nature of the problem of requests to block bad The police suspect her daughter, Neha Gupta, could not bear the shock of her mother passing news, and not only triggered my interest in the away. She walked out to the 15th floor terrace from where she jumped. Eyewitnesses said issue but also demonstrates the need for some Neha was seen joining her hands in prayer before jumping. She fell on the projected roof exploration into the possible logic that precedes of the fourth floor and died on the spot.

Even though other family members were such requests and potential solutions that can be present in the hospital at the time of Sunita’s death, Neha managed to reach the terrace applied by those caring for such patients in without them getting alerted. hospital. According to Manjusha, the ASI at Sadar Bazaar police station, “Family members are in extreme shock and not in the condition to give Part 1: any statement.” The family comes from an Ethnographic Data: Indian and Tibetan upper-middle class background. Voices

Neha’s body has been sent for a post-mortem. “No suicide note has been found so far. The There were a couple of uncanny woman’s family members were called immediately. We are waiting for post-mortem moments in the field when something in the reports,” said Vijay Singh, station house officer, Sadar Bazaar police station. Indian environment appeared to speak directly

Despite several attempts, concerned officials in to my study. Almost immediately upon my the hospital remained unavailable for comment. arrival to India to start research, while in the

rooftop restaurant of the guesthouse I stayed at in Pahar Ganj in Delhi and began scanning newspapers for articles related to healthcare, on the cover of the Sunday edition of The Times of India I came across an upsetting but highly relevant story on a lived experience of receiving bad news in hospital.139 This was quite distressing to read, to be sure, and was further impetus to investigate the delivery and reception of bad news in healthcare as it shows the importance of not only the manner in which sensitive information is deployed, but also how crucial after-care is for families post-mortem as a standard of care.

139 Yadav 2014: 1, 5, See full text in inset box #1.

61

Maynard refers to moments of the delivery and reception of both positive and negative news as “...‘natural’ breaches in the routine order or fabric of everyday life”140 which

represent disruptions to the quotidian life to the extent of jeopardizing participants’ sense of what is real... Representing a moment in ‘liminal’ time, both apart from and yet intimately involved in daily routines, they are an emotional threshold by which persons exit one social world and enter another.141

This is all too clear, and tragically so, in the case of the unfortunate young Indian woman from the article above who could not see a future for herself in a life without her mother. Maynard further explains how the context of bad news deliveries, under which might be captured the players, location, timing and manner of delivery, affects the memory of such information sharing:

That experiences of bad news and good news profoundly affect participants is evident from the clarity with which they are remembered. “Flashbulb memory” is how Brown and Kulik (1977) characterize the vivid retention we have of consequential events in our lives by way of the circumstances in which we were told.142

This can apply as much to patients as to their loved ones, but the following thoughts perhaps are more relevant to survivors of decedents:

...we...retain strong memories for having received the news of more private and personal shocks, such as deaths of family members and friends [Brown and Kulik 1977; Rubin and Kozin 1984]… Such events are easily recollected, in part, because they are subject to rehearsal - telling and retelling - which may help to establish the neural pathways of the memory rather than their being their mere reflection [Brown and Kulik 1977: 84-85].143

Such rehearsal as Maynard mentions is abundantly evident in the narration and storytelling around someone’s demise that occurs at wakes and , and even occurs at the bedside in hospital before a body has even been moved from the death-bed to the morgue. We may also apply the idea of rehearsal establishing and strengthening neural pathways in the case of a patient

140 Maynard 2003: 6 141 Maynard 2003: 11 142 Maynard 2003: 2 143 Maynard 2003: 3

62 given a cancer diagnosis after which the story of the delivery of such news often is repeated as a means of coping and integrating the information, especially in the early stages. The point remains that the nature of the narration and subsequent neural pathway and memory development crucially depends on the quality of the delivery of the news. And what about bad news received by HCPs themselves? Although including HCP cohorts, this study does not specifically address how bad news can affect HCPs, such as by example a family physician receiving poor diagnostic results for a patient they could well have been caring for throughout the patient’s lifespan. This is something that could perhaps be investigated more closely in future studies.

Later in the field, another uncanny moment occurred while in Jaipur at a movie theatre.

Seeing a movie in theatre was a first for me in the almost five years I had already spent in India prior. There was a forty-two second Hindi commercial before the movie started which left me flabbergast at its poignancy and which I have since shared many times while presenting on EOL decision-making in India. The setting is a hospital with a ringing telephone as the ambient background to a nurse on the phone blurry in the foreground, and a chubby pacing visitor with a noisy shirt in focus but in the background in front of a double-door. Cut to a close-up of a red lightbulb turning from lit to unlit above the door-sign saying “operation theatre.” A doctor taking off his gloves and in a surgery cap and face-mask below his chin is chatting with a nurse as they push through the doors, revealing the sound of the beeping of a vital-signs monitor. Then from the perspective behind the HCPs we see the visitor stop them by blocking their path with interlocked fingers at his chest and, head held upwards, says “Doctor sir” with a worried look.

His voice seems muffled as if his mouth is full. The doctor says in Hindi “By the grace of

God…” and then as the shot shifts to the perspective behind the son, the doctor shifts to English

63 to say “…your father is ok” as he pats the son’s arm in reassurance as the son whimpers slightly with relief as the HCPs walk away. The shot shifts to beside the son who gets tapped on the shoulder by someone who arouses him from his reverie. The shot shifts to behind the son to reveal two females in saris with bindi144 dots on their foreheads and a tall male with a handlebar moutache (in a slightly less noisy shirt than the other male) who quickly nods upwards and lifts his eyebrows as if to indicate “tell us!” as one of the females says in Hindi, while making the

Indian questioning gesture her hand (hand turned upwards and slightly twisted), “how is dear father?” The son takes a quick gulp of air, looks to the heavens while also slowly lifts his hands upwards while saying “Bhagawan ko…”145 or “with the Lord…” and the next few words are garbled because his mouth is still full. The group quickly reacts as the tall thin male repeats what he thinks he said as “bhagavān ko pyāre ho gaye!”146 or “he has gone to live with the Lord” and they start to wail with grief thinking this means that he has died. Cut to the son with a shocked look as he quickly realizes they have misunderstood his news, cut back to the females, one of whom is pounding her chest and the other swaying in lament then a cut to a male child who slaps his forehead while crying in a high-pitched wail. He has an enormous camera hanging around his neck and a small multi-coloured backback. Then the shot shows the son waving his hands to indicate “no, no, wait!” The next four shots show the tall male take a small tin of the type that holds mints out of his pocket, and with his back slightly from the group unfurls a long piece of

144 “For centuries, the bindi - an ornamental dot traditionally worn by Hindu women in the middle of the forehead - has had religious connotations within the Indian cultural context. Derived from the Sanskrit word bindu meaning “drop,” it has been simultaneously interpreted as the mystic third eye, the center of the created being, and a tool to balance one's internal energies through meditation (Ashok, 2000). Although varied versions of this “third eye” represent specific spiritual devotions (Gröning, 1998), the traditional bindi is red and indicative of a Hindu woman's marital status. More recently, the conventional bindi has been replaced by ornate “sticker bindis” (Ashok, 2000), convenient felt-based accessories decorated with sequins and colored stones to suit any outfit or occasion (Eicher, Evenson, & Lutz, 2000)… The form and color of the bindi varies according to an individual's gender, social status, and spiritual devotion, and Gröning (1998) explains how men wear a specific forehead marking - known as the tilak - to demonstrate religious affiliation.”(Antony 2010) 145 Translation assistance with this Hindi dialogue from Dr. Mona Munjal. 146 Translation by Munjal

64 paper and quickly signs it, crying all the while. There is a continuity error as the tall male is holding a piece of paper in two earlier shots, it disappears in the next, and then reappears when he unfurls it. Next we see the double-doors crash open to reveal a leg in a cast as we start to hear an emergency-vehicle siren. Then from the perspective of someone in a wheelchair with their casted-foot propped up, they race towards the group. The next shot from the side shows a man in the wheelchair in a patient gown, with a neck-brace, both arms and one leg casted, and some sort of cast on his head but with his face visible. His momentum is stopped as he hits the son in the behind with the casted foot, propelling the son forward into the group and to the sound of flatus which ends the siren. The group displays shock as the son desperately tries to explain the situation to the patient by saying “Dear father! They were saying you had died!”147 as he first touches the patient-father’s feet in respect, rapidly gesturing to the patient, then the group, then to the sky and then back to the group. In the next shot the patient-father pulls out a pack of gum as the sound of a bell rings and he tells the son in a gruff voice “chew KwicNic and speak correctly by quitting tobacco!”148 Quick cut to an image of a package of KwikNic (with light reflecting up and down off of the package) on a greenish background with some moving geometric shapes and “nicotine gum” in English text. The pack opens up to reveal pieces of gum inside as a narrator speaks in Hindi, saying “chewing gum will help get rid of addiction!”149

Images of mint spring out from the pack with the English text “tasty mint flavor.” The next shot is on the same background but with the son in a circle happily chewing as the English text

“chew, rest, repeat” are shown in an arrow that flips to reveal each word and arrows spinning around the head of the son to indicate the cycle. The final shot shows the KwikNic logo above

147 Translation by Munjal 148 Translation by Munjal 149 Translation by Munjal

65

Hindi words “tambaku chabaney se azādi” which translates into “freedom from chewing tobacco,”150 with white flapping wings on either side of the text. Cut to black.151

Although a caricature, but one made with humour by Indians for Indians, there are a number of both explicit and subtle cues about information sharing and various EOL issues in hospital. The first is that the son is the liaison for the group, passing healthcare information between the healthcare team through the physician and to his family. Next is the fact that five family members are in the waiting area and hallway as the loved one is in surgery. Perhaps a joint-family, they are all in attendance and are (for the most part) very concerned. It is not clear who they all are, but we might assume the older female is the patient’s wife, the younger female and tall male are either siblings to the liaison or the female is married to one of the brothers and the child is one of their offspring. It is also not clear but we might also presume that the liaison is either the older of the two males or the tall male is an in-law. The next aspect is that liaisons, or spokespeople, sometimes have trouble accurately passing on healthcare information, especially under conditions of stress. Upon the mistaken idea that the father had passed, the immediate and open grieving is another hint as to Indian bereavement habits when receiving bad news in hospital. The document signing is particularly fascinating, and that it occurs while the tall man continues to go through the motions of wailing. Presumably this is some sort of will or power of attorney for property but I am not sure why he would need to sign it. Beneficiaries do not need to sign a will, only the person themselves, their attorney and witnesses. Signing a will not in the presence of the person themselves seems odd, but the makers of the commercial are making a point to tell viewers that estate planning is a major feature in EOL care and that there are steps to be taken quickly post-mortem. Lastly, the patient themselves takes charge of the situation and his

150 Translation by Munjal 151 KwikNic 2014

66 health information and instructs the son as to how to go about better communicating in future by way of chewing nicotine gum instead of tobacco.

In the next subdivisions of this section we will look at exemplar informant quotes from the three major cohorts with regard to bad news in healthcare. They will cover the phenomena of withholding bad news such as a terminal diagnosis, poor prognosis or imminent demise prognostication; the perceived detriments and benefits to patients when disclosing such news; and the perceived detriments to families when sharing such sensitive healthcare information.

Although appearing in interviews somewhat, for the sake of brevity and due to there not being enough material I have excluded two related topics: (1) self-knowledge of patients with regard to their health status, which many informants mentioned as important and which has scriptural precedent in all three of the major Indic traditions in texts which discuss death omens (external or environmental indications of impending demise) and death signs (internal indications of impending demise); and (2) the difference in information flow in public versus private hospitals, as mentioned by some informants. Not all agreed but more feel that in government hospitals physicians are stretched and have less time for robust conversations, and that in private hospitals clients have more resources, and commensurately more education and access to medical information and thus ask more questions. Also I have avoided any discussion with regard to patients without decisional capacity, either by being unconscious or having various cognitive interferences, as most said that these states preclude patient decision-making involvement. Any informant with identifying details gave written consent to be identified in the study. Lastly, unless needing some minor clarifications for the sake of meaning, I have attempted to leave informant quotes intact so as to stay as close to their voices as possible.

67

Withholding difficult healthcare information: terminal diagnoses, imminent death prognoses

There were informants from every major cohort who mentioned the withholding of difficult healthcare information from patients themselves. A Hindu in Jaipur had this to say:

“The doctor has to be liberal, and talk to family but not the patient. If the patient is in critical condition, the doctor won’t tell the patient.”152 A Jain physician in Jaipur felt similarly and explained how he would not tell his patient if they were dying but would be “frank with relations.”153 A Tibetan Buddhist physician in Dharamsala also prioritized the delivery of healthcare information to families:

Usually we try to discuss with family members first in the doctor’s office, that they have this and that…and ask “shall we tell patient?” It is done kind of with family, or both family and doctors…but not with patients. Ultimately the family has to deal with the patients. We respect their rights to share with the patient or not… Sometimes if the patient is young, then the family members refuse to tell them. We usually listen to families.154

The mention of the location of family discussions speaks to a concern for privacy, but the family having the “right” to control health information about their loved one needs to be checked against legal and medical standards in India, as will be done in the analysis section. However, not all agree that the standard of care necessarily starts with the sharing of healthcare information with families. The sole South Asian Registered Nurse informant in the study, a Tibetan Buddhist at the Tibetan-run charitable Delek Hospital in Dharamsala, gives a slightly different take on information sharing: “Our point of view: we do tell everything to the patient, sometimes attendants do not want that.”155 So, from this nurse’s perspective, it is not the choice of the healthcare team to start with the family when there is information to share, but rather that

152 J-121814-H-018. The codes indicate: location and date of interview, religious denomination as well as indicating a degree or position such as a doctorate, all but dissertation, biomedical physician, traditional physician, Registered Nurse (or being culturally from the tradition but a non-adherent), and the number of the interview in chronological order. 153 J-121914-JMD-019 154 DSL-041815-BMD-45 155 DSL-042315-BRN-48

68 families (and any other close relations that could be captured with the term “attendant” which is used commonly in India to refer to those supporting patients in the hospital environment) are the ones at times who are gatekeeping by driving the flow of information through themselves first.

This is supported by the personal physician of H.H. the Dalai Lama, Medical Advisor to the

Central Tibetan Administration (CTA) and Chief Medical Officer of Delek Hospital, Dr. Tseten

Dorji Sadutshang: “My personal feeling, in this community, we would tend to tell them the truth.

Sometimes a request comes from family to not divulge the disease, prognosis or diagnosis. This is not without benefits, but they are temporary ones.”156 Sometimes, however, it is the patients themselves that indicate that they do not want to have certain healthcare information disclosed to themselves, as stated by another Tibetan Buddhist physician in Dharamsala: “We do have patients who request us to not tell the patient a diagnosis or prognosis.”157 So, in the opinion of these informants, sources for directing healthcare information away from the patient and towards the family first instead are threefold (the hospital circle-of-care triad): as done by the healthcare team as a matter of course, as requested by family members, and sometimes from the patient themselves.

Receiving difficult healthcare information: perceived detriments to patients

Informants from each major cohort gave various reasons as to why it is detrimental to patients to share difficult healthcare information with them. A Hindu in New Delhi, a retiree and member of the Ramakrishna community, was my first informant of the study. The interview took place on beautiful Ramakrishna temple grounds in the heart of the city and was the longest of all of my interviews running at four hours in length. We also shared lunch together with the community comprised of both laypeople and . He says this: “It feels not good to know that

156 DSL-040715-BMD-41 157 DSL-040815-BMD-42

69 he is dying. The doctor also feels not good that someone is dying, and feels hurt (they say

“ohhhh”)… Doctors and family talk about what is happening, and what will happen, and the patient doesn’t know because they are dying. Better to die happy.”158 The informant feels that both patient and physician will be upset by knowledge of the fact that the person is dying, to such an extent that the informant gives a sort of sigh that might indicate the physician feeling some empathy for the person. They also suggest that the dying process might interfere with patient involvement in decision-making and place importance on a positive state of mind at the time of death, which in their view can be compromised by knowledge about the imminence of death.

A Jain in Jaipur says that “doctors think it’s not good to inform because they can become nervous” and gave an example: “In one case of a severely ill relative, young - twenty-six years old - the doctor told him they will die within a day. They became very nervous and their condition got critical and they had to be shifted to another hospital.”159 In this case the person not only had an emotional reaction to the prognostication of imminent demise, but their health status deteriorated rapidly. Other emotional states are mentioned in addition to nervousness as Dr.

Chok Tenzin Monlam Peltsok, a doctorate-holder and Head of Research and Translation at the

Library of Tibetan Works and Archives (LTWA) and where I studied language and philosophy for two years in the early 2000s, says that with health information teams “sometimes hide.

Indians and Tibetans do not inform because it makes for worry.”160 Some go even farther, such as a Jain physician in Delhi who thinks that a serious diagnosis is “traumatizing.”161 The Junior

Assistant to personal traditional medical physician to H.H. the Dalai Lama, Dr. Y.K. Dhondue

158 ND-110814-H-001 159 J-122514-J-021 160 DSL-032615-BPHD-35 161 ND-111114-JMD-003

70 and with whom I also spent a great deal of time with and broke bread, has strong opinions about the presumed negative effects of a terminal diagnosis: “Doctor tested with a biopsy then found cancer. After the result, people hear “cancer,” automatically twenty-five percent of people after hearing will have mental weakness the day after, and day-to-day there is more weakness in the body also. Some Indian people feel there will be too much worry if they have cancer.”162 His patient population includes both Tibetans and Indians, and with the disclosure of a terminal diagnosis he points to both resulting worry and health status decline.

Perhaps counter-intuitively, a Tibetan Buddhist Registered Nurse, the sole South Asian nurse in this study, has come across patients who stop essential EOL care when learning of their trajectory towards death: “Some patients if they know the prognosis say ‘I am comfortable, now

I’m dying and don’t want pain meds,’ but they want to die without pain.”163 Although not entirely clear to me, my best attempts see this as appearing to mean that despite wanting to be free from pain at the end of life, some patients’ pain management choices are altered by having a foreseeable death prognosis but perhaps only under the condition of already having their pain controlled. Pain management is explored in great detail in chapter four “I have this pain…” End- of-life Models of Care: South Asian Adherent Perspectives on Pain Management, Hospice

Palliative Care and Medical Assistance in Dying (MAiD), but in general there are some resistances among Buddhists and Jains with regard to medications which are seen to alter consciousness, such as opioids and sedatives. This is due to an importance placed on clarity of mind at death as the springboard to the transmigration process and something which can affect the outcome of rebirth. The Joint Secretary of the Department of Health for the CTA, Mr. Thutop

162 DSL-041115-BND-43 163 DSL-042315-BRN-48

71

Namgyal, who made it clear that his views are his own and not representative of the CTA in general, has many EOL concerns:

I strongly disagree with hospice. When people are dying, they know that, and even then they will send them to a dying hospital. I think it is like rubbing salt on a wound. Even if the patient agrees, I don’t think relatives should send them to hospice… Exceptional cancer patients, while on their dying bed, we should not tell the patient. From my own experience, worrying actually kills the patient. Some patients, if they have chances of cancer or terminal disease, then depending on the patient doctor or nurses should not say anything to the patient, because it affects the life of the patient. Doctors and nurses shouldn’t be too direct to patients…ignorance is bliss. If the patient doesn’t know anything about cancer and the family members know, and start taking care of them, I think it helps. Worry actually kills. A patient who is quite healthy, once told he has such a disease, within a week he will become so weak. It is not the disease killing: it is belief, the mind actually is killing. It is very important to keep secret…better not to tell them.164

So, in addition to having an aversion to hospice, with the idea that admission to such a facility can itself be an unintentional disclosure of death imminence, based on the psychosomatic influence of the mind he has a grave concern with knowledge of death imminence resulting in worry and causing not only a decline in health status but perhaps even a hastened death.

Responses were variable but single informants mentioned bad news possibly bringing upset to patients, making them nervous, traumatizing them or even hastening death. Multiple informants, however, mentioned bad news potentially bringing worry and causing health status decline.

Receiving difficult healthcare information: perceived benefits to patients

Informants did not only mention the potential harms that could come to patients with receiving difficult healthcare information, but also gave some of the perceived benefits that could come to them. In accord with a normative emphasis in the non-theistic traditions to prepare for death in various ways, both Buddhists and Jains mention the importance of preparedness. A

Buddhist physician in Dharamsala holds that “some say it is better to tell them so they can better

164 DSL-032715-B-36

72 prepare patient for their demise”165 and Dr. Peltsok of the LTWA says if “Buddhist, and one hundred percent sure they will die, they should inform them to prepare for next life.”166 The personal physician of H.H. the Dalai Lama agrees:

I feel that they should be a state of preparedness rather than die in ignorance…it is more realistic. So the prime concern is the patient not family members. They are of concern but patient is the main person we are trying to help, we have to… I think human beings have a level of intelligence and after a while they would know themselves even if we don’t tell them. We can’t get around this. The time of death is uncertain and the sooner we know the better. It gives time for the person to contemplate his/her death, and be prepared.167

Dr. Sadutshang clarifies that the patient is firmly at the centre of the circle of care, as well as suggesting that patients can very well naturally know their health status without being formally told.168 A Jain in Jaipur speaks to their own need for death preparedness: “Earlier is better for information about my death so I can prepare myself and detach myself from all mundane things.”169 One sole informant gave an example of a patient actually improving after receiving a poor prognosis of imminent death: “There is a story of a man terminally ill with cancer. He asked the doctor how long he had, maximum two to three months. He asked: without meds how long?

The answer was the same. He quit meds, enjoyed life, bought a first-class cruise for a month, enjoys, drinks, had fun with girls. After two months he came back, and was not sick anymore…he was almost okay!”170 I am quite close to this informant, the Director of the

International School for Jain Studies, and this story particularly tickled me because he is an elderly, conservative Jain man and his mention of drinking and playing the field is quite out of character! Lastly is an example of an informant who sees resources sometimes being part of the patient decision-making metric, diverting funds away from healthcare: “If the prognosis is not

165 DSL-041815-BMD-45 166 DSL-032615-BPHD-35 167 DSL-040715-BMD-41 168 I had hoped to explore death signs which indicate impending death more thoroughly, such as physical and mental signs, and death omens such as environmental signs, but chose not to for the sake of brevity. 169 J-122514-J-021 170 ND-111014-JPHD-002

73 good, many people say they have lived enough and don’t want to spend their hard-earned money.

They choose to die peacefully and use the money for other things rather than expensive interventions.”171 Although not mentioned explicitly, it could be that some who would divert funds could use the poor prognosis as the impetus for wrapping up one’s affairs and estate planning.

Responses again were slightly variable with single informants mentioning the receiving of medical bad news sometimes causing health status improvement or acting as a trigger for estate planning. Multiple informants, however, mentioned death preparedness as the main benefit to receiving a poor diagnosis or grim prognosis.

Receiving difficult healthcare information: perceived detriments to families

Lastly, in this section, we will briefly look at perceived harms that could come to families who have received difficult healthcare information about their loved-one. The newspaper story of the daughter who jumped to her death after her mother’s demise is a tragic but extreme example of such. A Jain in Jaipur spoke of being an SDM and strategically controlling healthcare information such as that concerning the critical event of a myocardial infarction (or heart attack) to, presumably from the context of our conversation, protect the family from undue distress: “I was the main decision maker in this case. Severe heart attack, large MI. I didn’t want the patient and wife to know that.”172 Mr. Lobsang Rabsel, the Deputy Director of Lha in Dharamsala which is a skills training centre for new Tibetan refugee arrivals and where my wife and I attended a group English conversation practice session in a room full of both lay and monastic Tibetans of both genders, had this to say: “Especially the family worries. My family is in Tibet, why make them suffer? Even if I have cancer I wouldn’t tell them. It’s an unnecessary problem. I would

171 DSL-040815-BMD-42 172 J-122514-J-021

74 hide it. Telling or not depends. It’s most important to not to make the family suffer.”173 In both cases informants feel that there are times when families need to be protected from receiving difficult healthcare information about their relative to prevent upset.

The needs of families, who would be activated as SDMs if the patient became unable to decide for themselves, are complicated factors in decision-making metrics. Some might think that it would be selfish if a family-member SDM included the patient’s valid concerns for the well-being of the same family members who are making proxy decisions in their deliberations.

Others argue that if an SDM is deciding on behalf of the person as the person would for themselves, then it would be incorrect to exclude any of the person’s prior concerns expressed while capable. Family members too could say that the burdens on them as perceived by the patient are, in fact, not present and thus makes this concern moot. Vig states that

patients may be more concerned about the effects of decision-making on their families than with the accuracy of treatment decisions and that the definition of autonomy should be expanded to include the interests of individual patients and their intimate others.174

Expanding the concept of autonomy to include family could well apply to Indian and Tibetan contexts with their strong emphasis on their family units.

The main concern of informants with regard to families receiving medical bad news is the distress or worry it could cause them.

Part II Analysis

The Legal Stance on Autonomy and Consent in India

In order to see if withholding of health information from a patient is legally permissible in India, we can look to some legal commentary on autonomy and consent for guidance. If we

173 DSL-032515-B-34 174 Vig et al. 2006: 1688

75 consider the patient-physician relationship with regard to patient autonomy and power dynamics, there is much evidence that decision-making is unequally weighted towards the physician. Many informants mentioned the great faith and trust vested in physicians, and this will be explored in greater detail in the final chapter on EOL decision-making itself. An Indian High Court judge notes that there is similar medical paternalism in UK and Indian courts due to far too common idea that the “doctor knows best” and a habitual deferral of power to the physician in medical decision-making.175 Legal scholars Kumar176 and Nandimath177 both agree that a paternalistic

‘doctor-centric’ model of decision-making has historically predominated leaving the “ambit of the decision-making authority of the doctor in India…very wide and almost unrestricted.”178

Kumar speaks of the “unwritten understanding of patient’s complete faith, trust and confidence in the capability of the doctor” but that “cases have started coming to the courts, increasing in number, showing a questioning of doctor’s authority179 indicating and “increase in patient concerns with individual autonomy.”180 The two scholars also agree that a shift towards patient autonomy is evident in India not only due to an increase in malpractice suits, but with those that are ruled in the patient complainant’s favour.181 Although the balance of power is shifting, the historical trend that tends toward doctor-centric decision-making gives us our first hint towards physicians having authority to choose to withhold sensitive information from a patient.

With regard to consent, Kannan has this to say:

A doctor is always required to communicate all inherent and potential hazards of the proposed treatment, the alternatives to that treatment, if any, and the likely effect if the patient remained untreated. The standard of disclosure, however, is subject to only two

175 Kannan 2014 176 Kumar 2005 177 Nandimath 2009 178 Kumar 2005: 37 179 Kumar 2005: 46-47 180 Kumar 2005: 49 181 Kumar 2005, Nandimath 2009

76

exceptions, namely, if there is genuine emergency and [if] the information would be harmful to the patient.182

This disclosure standard exemption clearly gives physicians a valid option to not disclose certain healthcare information that they deem potentially harmful, although what “harmful” means exactly or any threshold of harm is not provided. Kannan also distinguishes between consent as conceived and practiced in India and the UK as contrasted with North America by citing the

Supreme Court of India pointing out the difference between ‘real consent’ in the UK and

‘informed consent’ in the US (and Canada, even though left unmentioned). In the UK, the elements of consent are defined with reference to the patient based on (1) voluntariness, (2) capacity, (3) patient having a “minimum sufficiently adequate level of information about” the treatment being proposed.183 Conversely, American courts “shifts the emphasis to the doctor’s duty to disclose the necessary information” needed to make a treatment decision.184 Thus in the

UK and India, consent standards place the onus on the patient rather than on the physician.

Moreover, “the law in India follows the British approach of the standard medical practice as governing the decisional latitude enjoyed by a doctor.”185 Based on the onus of consent lying with the patient combined with a weighting of the standard of “acceptable medical practice” over informed consent, physicians in India appear to have much leeway in choosing what information they share or not.

Withholding Bad News in Healthcare among Non-Asian Cultural and Religious groups

There are some studies of non-Asian cultural and religious groups that specifically address the issue of withholding bad news in healthcare. In “Cultural Humility and Compassionate

182 Kannan 2014: 172 183 Kannan 2014: 174, emphasis added 184 Kannan 2014: 174, emphasis added 185 Kannan 2014: 173, emphasis added

77

Presence at the End of Life,” a Latino Community Liaison for the Hospice Caring Project and bioethics committee member in California gives this advice:

…health providers must become knowledgeable of their patients' health care models because principles, practices, and procedures that are beneficial to one cultural group might not be beneficial, and might even be harmful, to other cultural groups. For instance, in the United States, it is customary for health providers to disclose a terminal prognosis to patients under the principle of truth-telling, respecting also the perception that the patient has the right to know the truth. However, in diverse Latino cultures, families often oppose the direct disclosure of a terminal prognosis to the patient, in the belief that they are protecting the patient from information that might be experienced as cruel, disrespectful, or killing or giving up hope.186

From an article “Jewish and End-of-life Care” in the Journal of Palliative

Medicine comes this statement about healthcare information sharing in general: “While patients should generally not be lied to regarding their conditions, withholding information or even providing false information may be appropriate when it is felt that the truth will cause significant harm.”187 Another study, closer geographically to my field-sites and even likely including

Buddhists (albeit from different traditions) among their participants, is one to which I have often referred to over the years for its framework of various physician-based decision-making models.

Entitled “Family Centred Decision-making and Non-disclosure of Diagnosis in a South East

Asian Oncology Practice” from the Journal of Psycho-oncology, this piece speaks to our subject- matter in its very title. The study’s purpose of was “[t]o audit the extent of non-disclosure of cancer diagnosis (NDD) in South-East Asian patients referred to a Western trained oncologist, and determine the factors associated with this pattern of decision-making.”188 From among the predominantly Chinese participants, they found that NDD was found in 17% of the sample group, and “quantitative discussion of prognosis was avoided in 36.8% of patients” and that

“[a]dvanced patient age,…female sex,…non-English speaking…and palliative treatment aim…

186 Austerlic 2009 187 Kinzbrunner 2004 188 Back/Huak 2005

78 remained significantly associated with NDD.”189 Lastly, that the “high rate of desired NDD is evident in this Asian oncology population when a family-centred model to medical decision- making is used.”190 Without exhaustively listing all of the decision-making models the study gives in its framework, each with varying levels of patient, family and physician participation, it is highly relevant to this chapter that the family-centred model accounted for an increase in requests for diagnosis withholding since in my Indian and Tibetan participant cohorts they either belong to a joint family or, at least, come from a strong history of joint families, and the family unit features prominently in both conceptions and practices of decision-making, as will be discussed in the final chapter. Two physicians from Sunnybrook Hospital in Toronto speak of

East Asian clients having a resistance to discussing death and unrealistic therapeutic optimism with regard to palliative care as affecting information sharing in their study “End-of-life Care in

Canada”:

Communication with patients about end-of-life issues is also strongly influenced by cultural norms. Death is rarely openly discussed in many East Asian communities [Economist Intelligence Unit. “The quality of death: Ranking end-of-life care across the world.” ; New York; Hong Kong: The Economist; 2011]. Although withholding information from patients is uncommon in North America, there is often differential understanding of the intent of therapies at the end of life, with the clinical team providing ‘palliative’ therapies, while patients and families still understand this to be an attempt at a cure [Weeks JC et al. “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer.” N Engl J Med 2012; 367:1616-1625.].191

The therapeutic misconception mentioned here, thinking that palliative care (and in many clinical trials the therapeutic misconception is applied to research instead) is aimed at curing rather than merely comfort, can certainly complicate what information a patient or the family of the patient would like to receive for themselves or have delivered to their loved-ones.

189 Back/Huak 2005 190 Back/Huak 2005 191 Fowler/Hammer 2013: 129

79

Although not entirely comprehensive, these several studies give us some sense of hesitation around difficult healthcare information at the EOL among groups beyond our Indian and Tibetan cohorts which include Jewish, Latino, South East Asian and East Asian communities.

Medical Studies on Sharing of Sensitive Healthcare Information

There certainly is no lack of medical and nursing material, both immediately local and otherwise, which address the issue of deployment of sensitive healthcare information. Although a large amount of text, I think the following historical perspective on North American patient- physician relationships from the Journal of the American Medical Association is worth sharing in full:

Historically, patients have been accorded insufficient weight in the process of medical decision-making. In 1847, the inaugural Code of Ethics of the American Medical Association (AMA) stated, “The obedience of a patient to the prescriptions of his physician should be prompt and implicit. He should never permit his own crude opinions as to their fitness, to influence his attention to them [Reich 1995].” This statement certainly leaves no doubt about the intended locus of authority in the patient-physician relationship. The patient’s role was to be obedient and deferential. Physicians were not to be challenged, and patients were not to offer their “own crude opinions.” More than 100 years later, patients’ roles in the patient-physician relationship remained relegated to the background, as evidenced by limited participation in decision-making and limited access to important information. An article published in JAMA in 1953 documented that 69% of physicians never told or usually did not tell their patients that they had cancer. One of the physician participants in that study offered the following commonly held justification for this practice: “I never tell the patient he or she has cancer no matter how strong or stable they are emotionally: very, very few of them are equal to standing the shock of being told the truth [Fitts et al. 1953].” A similar study published in 1961 demonstrated that 90% of physicians did not inform patients of their diagnosis of cancer [Oken 1961]. Fortunately, over the past 50 years, much has changed with respect to the patient’s role in decision- making and their status in the patient-physician relationship. In the context of complex shifts in social norms in the 1960s and 1970s [Starr 1982], patient autonomy became established as a dominant principle in bioethics [Beauchamp/Childress 2001]. A similar study published in JAMA in 1979 revisited the issue of disclosure of cancer diagnosis and found that 97% of physicians now preferred to tell patients that they had cancer [Novack et al. 1979]. Changes in the patient’s status in the patient-physician relationship

80

and involvement in medical decision-making paralleled these changes in disclosure of information to patients.192

The slow shift towards increasing involvement of patients in medical decision-making, as in

India but having different milestones and moving at a different pace, is paralleled by commensurate shifts in disclosure practices. Beauchamp, as cited by Carrese above and one of two trailblazers of the establishment of the four major bioethical principles193 as canon, along with Walters also give a historical perspective on disclosure as appearing in various medical texts and codes through time:

Several pioneers in the history of medical ethics have explored issues of justifiable nondisclosure and confidentiality. These figures include classical historical documents such as the Hippocratic writings (fifth to fourth century, B.C.), Thomas Percival’s Medical Ethics (1803), and the authors of the first Code of Ethics (1846-1847) of the American Medical Association. In these traditional codes and writings, moral concerns for the autonomy of patients are not found.194

So, if we start from the earliest bioethics writings of Hippocrates, who also happens to be contemporaneous with the founders of the non-theistic Indic religious traditions which incredibly also have a strong non-harm focus, although appearing first they still have lasting impact on disclosure practices in modern medicine: “Many physicians...view truthfulness through the

Hippocratic principle that they should do no harm to patients by revealing an upsetting condition.”195

If from Hippocrates we next move to Percival, who “argued in favor of benevolent deception in medicine,”196 we can look to the 19th century American physician Hooker who followed in Percival’s footsteps. He gives three interesting thoughts on the topic that troubles nondisclosure:

192 Carrese 2006: 692-693 193 Autonomy, beneficence, non-maleficence and justice. 194 Beauchamp/Walters 1989: 371 195 Beauchamp/Walters 1989: 371 196 Beauchamp/Walters 1989: 372

81

First, it is erroneously assumed by those who advocate deception, that the knowledge to be concealed from the patient would, if communicated, be essentially injurious to him… Secondly. It is also erroneously assumed that concealment can always or generally be effectively carried out… Thirdly. If the deception be discovered or suspected, the effect upon the patient is much worse than a frank and full statement of the truth can produce…197

I think these points are absolutely crucial to consider, and they have already been useful to my clinical ethics practice. The first, on the assumption that disclosure of certain information would in fact be harmful to a patient, harkens to why I have been referring to the detriments to patients from receiving difficult healthcare information as “perceived.” This wouldn’t apply to the examples given by my informants where there was a true health status decline after receiving such information, but there was also an example of someone improving instead after receiving a terminal diagnosis. How to measure the potential for an untoward reaction to receiving difficult healthcare information? Beauchamp and Walters give some guidance on this issue:

In modern medicine the nature and quality of the physician-patient relationship may vary with the duration of prior contact, the mental or physical state of the patient, the style the physician chooses for relating to the family, and problems of patient-family interaction. The patient’s right to know the truth and the physician’s obligation to tell it have often been thought to be contingent on these and other factors in the relationship.198

I would add that the way in which the information is received also is contingent in part on the factors listed above. Later, in the final section under informant-driven solutions, taking each person in their unique context appears prominently.

Like Hooker, I am also gravely concerned with how a healthcare team would even go about carrying out any withholding of healthcare information and the harm that would come if discovered by the patient. In the case I gave in the introduction of the Greek patient whose parents wanted the team to stop life-sustaining dialysis and not tell the patient but just let them

“slip away” without distressing them with the decision-making processes, we discussed with the

197 Hooker 1989: 378 198 Beauchamp/Walters 1989: 371

82 parents the fact that the patient would know that he had stopped going for the treatment, which occurred almost every day of the week. And given the low threshold of the patient’s temper, understandably low from having been sick most of their life, if they then found out that the decision was made unilaterally without their direct involvement they well could have flown off the handle. This case, however, was complicated by fluctuating capacity and also that the patient had been requesting to stop the treatment but still useful to attempt to apply Hooker’s concerns to an actual situation. Another case, involving MAiD, was different in structure in that it had to do with blocking patient information from a relative. The person making the request for the procedure thought of not telling their father of their plans on the logic that the parent would have trouble with the information both based on their frailty and religious convictions. People are certainly entitled to place parameters on how their PHI is handled, as PHI is still protected after death (as “person” is defined as living or deceased in legislation) and the new Ontario MAiD legislation Bill 84 Medical Assistance in Dying Statute Law Amendment Act gives special protection to those that have undergone such procedures. The underlying disease which was the basis for MAiD eligibility is listed as the both for insurance claims and vital statistics.199 When I met with the patient, I told them that the team would certainly help manage such an information lock-box the best we could but that we would need help from them to strategize how to best do this. For example, it would require asking the person to not visit on the day of the procedure and giving some reasoning, and delicately handling subsequent conversations on the cause of death delicately and without deception. I also told the person to consider that information can never be protected perfectly, despite our best attempts, and if their father accidentally found out that there might be a different and perhaps worse untoward effect on them than merely telling them of the procedure. In the end, the patient decided to tell their

199 Hoskins 2017

83 father and although not an easy conversation, all went quite well. Of course, I don’t know how our conversation affected the patient’s approach, but the case helped me to incorporate such concerns into my consulting habits.

It is here that it might be helpful to distinguish between withholding which is merely that, and that which is also deceptive. Hooker states that

I wish not to be understood as saying that we should never take to withhold knowledge from the sick, which we fear might be injurious to them. There are cases in which this should be done. All that I claim is this – that in withholding the truth no deception should be practiced…200

Why is Hooker concerned with deception? Beauchamp and Walters answer:

Deception that does not involve lying is commonly believed less difficult to justify than lying, because deception does not so deeply threaten the relationship of trust; and underdisclosure and nondisclosure are thought even less difficult to justify, in many contexts. Those who share this perspective argue that it is important not to conflate duties of not to lie, not to deceive, and to disclose. They argue that much of the literature on truth telling mistakenly treats these duties as if they were a single duty of veracity.201

The distinctions made between lying, deception and disclosure are helpful, as is the ranking of actions with regard to their justifiability. The key seems to be the extent to which the action threatens the therapeutic alliance. I would add, as per Hooker, that it is not just the act itself, but also the likelihood of being able to accomplish the type of strategic information sharing as planned and the likelihood of discovery by the patient which factor into the level of threat to the trust in the patient-physician relationship.

Another scholar, this one a former member of our ethics team, a mentor and the daughter of the bioethicist who inspired me to pursue a career in the field from our working together for many years in hospital, here citing Begley, also distinguishes justifiable withholding of information from lying:

200 Hooker 1989: 378 201 Beauchamp/Walters 1989: 371-372

84

Regarding character and deception in nursing practice, Begley highlights cases of deception regarding lying to patients about a diagnosis to relieve the stress and burden of fear of dying. She indicates that there exists a conflict between truth-telling (trustworthiness/honesty) and being compassionate. She remarks: “Some health-care professionals consider withholding the truth from patients to be absolutely morally wrong in all circumstances. Others feel strongly that although deliberate lying cannot be justified, withholding the truth rather than destroy hope, which is precious and therapeutic, can be justified in the interests of compassion and without the arrogance or paternalism often associated with these decisions [Begley 2008: 338].”202

The tension between ethical principles, veracity versus compassion, is prototypical of ethical dilemmas and I am surprised when I think that none of my informants specifically mentioned the principle of compassion with regard to withholding of information, especially among the Tibetan

Buddhists for whom compassion is so essential as part of the bodhisattva stream of Buddhist schools. It is also interesting that here veracity as an absolute is given as one sign of medical paternalism, where in the Indian context of strong medical paternalism there are physicians who are amenable to withholding certain types of information under certain conditions. Perhaps the common factor is the physician determining what is best for the patient, either to receive all information or partial information, which are both paternalistic although manifesting differently.

Another concept that is commonly referred to in discussions on selectivity in health information sharing is that of therapeutic privilege. This from Bell et al.:

The ethical principle of “therapeutic privilege,” sometimes referred to as “benevolent deception,” has historically been invoked to justify nondisclosure of information when clinicians have strong evidence that such disclosure would lead to more harm than good [Brown 2008, Jackson 1991]. We know, however, that patients and families almost always want an honest account of the facts, even when clinicians believe that it may be too difficult for them to hear [Hébert 2001, Annas 1994]. Today’s professional norms, therefore, require openness and transparency in all but extremely rare circumstances, highlighting that “patients have a right...to be free of any mistaken beliefs about their care [Bostick et al 2006, CEJA 2014].”203

202 Abdool 2015: 147 203 Bell et al 2015: 160

85

Although a broad overstatement as to what patients and families would typically want from citing Canadian and American studies, which doesn’t account for any variety in client dispositions in general or from those belonging to different cultural groups, the researchers do however still narrowly allow for times when full disclosure of sensitive information might be best treated carefully despite more rigorous standards of late. Abdool has this to say about the concept:

...therapeutic privilege is a highly controversial topic in healthcare. Fried and Perlis describe therapeutic privilege as follows: Therapeutic privilege is the concept that a physician may sometimes deceive or lie to a patient for the patient’s own good. One example could include outright lying about a poor prognosis in an attempt to minimize a patient’s associated psychological stress. More subtle examples could include providing limited or incomplete information in order to steer a patient toward a preferred treatment. Therapeutic privilege may attempt to “preserve the patient’s hope, and psychological and moral integrity, as well as his self-image and dignity [Fried 2012]”.204

A similar definition as given by Bell et al, the first example bears great resemblance to the logic given by many of my informants. The difficulty, however, lies in the example of strategic delivery of some pieces of information to the exclusion of others to influence the outcome of decision-making. This is qualitatively different than the attempt to reduce the negative impact of difficult information.

From these philosophical and clinical sources, we see a progression in medicine towards more disclosure on the basis of an increasing emphasis on autonomy and decreasing medical paternalism over time. There seems to be alignment in a rejection of outright lying to patients, regardless of the intention, but there are indications that the tension between a compassionate veiling of hard truths versus full disclosure does exist. The sources vary, however, in how strongly they require full disclosure of the clinical picture under circumstances of sensitive new

204 Abdool 2015: 121

86 medical information, or how much room there is for the withholding certain information in consideration of the potential for some negative impact on patients.

Intersections of Indic and non-Indic Theory

Foucault’s use of “avowal”

I came across the concept of “avowal” in Foucault’s 1981 series of lectures published as

Wrong-Doing, Truth-Telling: The Function of Avowal in Justice. According to the editors, the concept of avowal apparently marked his “transition from the political to the ethical.”205 Foucault starts the lectures with a medical example of a psychiatrist in the late 1800s basically forcing his patient to verbally admit his diagnosis. Based on Freud’s speech-act theory and religious confession, it is seen as a therapeutic operation located “between the illness and the doctor,”206 a

“technology of the subject” through which the “individual is brought to transform himself and to modify his relationship to himself.”207 Avowal is defined as “a verbal act through which the subject affirms who he is, binds himself to this truth, places himself in a relationship of dependence with regard to another, and modifies at the same time his relationship to himself.”208

In the clinical context, with regard to capacity, in our region it is not required of the patient to explicitly name their disease, nor do they even have to buy into there being something untoward happening. But what they must be able to do is have an understanding of what the condition does. For example, a person with schizophrenia might not call it by its name nor think they are sick, but they might know and accept some of the features of the illness such as by saying “I hear

205 Foucault 2013: 5 206 Foucault 2013: 14 207 Foucault 2013: 24 208 Foucault 2013: 4

87 voices.” This is enough. The idea of a physician bullying a patient into admitting their condition by the physician’s standards is cringe-worthy.

While discussing the concept, Foucault mentions “the idea that to speak the truth about something annuls, erases, or wards off this very truth.”209 This, to me, was striking.

I am proposing that for many Indo-Tibetan religious agents, avowal of terminal diagnosis or imminent demise prognosis could be seen as having the opposite effect: an enhancement of illness rather than dissipation, hastening death rather staving it off. And this avowal aversion, if you will, could be related to an indigenous Indic concept and practice: that of mantra.

Indic Mantra

Mantra, or the use of Sanskrit (or Tibetan transliterations of Sanskrit) seed syllables, appears in all of the three major Indic religious traditions as well as in Sikhism. These syllables, often with no emphasis on their literal meaning, are felt to have positive or negative inherent vibrational power such that a good mantra can purify illness or stave off certain types of death, and a bad mantra can harm or even cause death. This might give some insight to this avowal aversion with regard to difficult healthcare information potentially coming from a wariness of the power of signifier utterances causing or enhancing the signified, making illness worse or hastening death.

is

Mol’s use of “co-production”

Mol’s 2003 The Body Multiple: Ontology in Medical Practice is a hospital-based ethnography on atherosclerosis, and one of my favourites. Among other things, Mol has divided her text on each page with the main text on top and commentary on the bottom, which is quite

209 Foucault 2013: 13-14

88 unique and changes the way the reader engages with the text. Because she is a clinician, she had rare access to the interactions between physicians and patients and in those relationships, had the insight that the subject-object distinction between the patient and the physician collapses in the therapeutic relationship. Neither exists without the other, they are co-produced or interdependent.

One might ask how this is different from any relationship, but co-production is particularly relevant in unbalanced power relationships, and potentially helpful to bring about power balance.

Again, rather than co-opting this concept on its own merits, I see it mirrored by another related

Indic concept of the same name: that of interdependence.

Indic interdependenc

Interdependence appears in some form or another in all three of the major Indic traditions, such as in the fundamental Buddhist concept of pratītyasamutpāda,210 in the Hindu image of Indra’s net in which all phenomena are reflected in each other endlessly, and in the Jain concept of anekāntavāda211 which is a dialectical technique of approaching an idea from all possible angles. This Indic concept could help as a corrective to the imbalance in patient- physician relationships as seen in the weighting of power towards the clinician not only in India but almost everywhere. No patient, no physician. This can also be conceptually helpful specifically to enhance collaboration in medical decision-making.

North American Regulatory Documents that Address Sharing of Sensitive Healthcare Information

One of the goals of this study as a whole is to not only gain insider perspectives on the healthcare experiences of Indians and Tibetan refugees in their Indian context, but to theoretically apply this to the Canadian healthcare landscape for the sake of improving outcomes

210 Sanskrit for “chain of causation (Williams 2008: 673).” 211 Sanskrit for “skepticism (Williams 2008: 42).”

89 for those living here in diaspora. What can HCPs do with requests to withhold healthcare information from patients according to some of the regulatory bodies they are accountable to?

Abdool gives six elements to informed consent: “(i) the nature of the treatment, (ii) the expected benefits of the treatment, (ii) the material risks of the treatment, (iv) the material side effects of the treatment, (v) alternative courses of action, and (vi) the likely consequences of not having the treatment.”212 It is interesting that this list does not include mention of some sort of robust sharing of the patient’s clinical condition as a prerequisite, for how can the appreciation arm of capacity standards be met when it is here where the patient is tested for their ability to apply the general information given specifically to themselves and their unique context? Kannan appeals to Beauchamp for the “five elements of informed consent: (1) disclosure, (2) comprehension, (3) voluntariness, (4) competence, and (5) consent.”213 With this list, we could include a medical update under “disclosure,” which here mainly refers to information about the intervention itself. The perennial question remains: how can a person make a fully informed choice about a treatment or plan of care if they have not been fully informed about the nature of the current condition? In “Medical Professionalism in the New Millennium: A Physician

Charter” by Sox, under commitment to honesty with patients, this is said:

Physicians must ensure that patients are completely and honestly informed before the patient has consented to treatment and after treatment has occurred. This expectation does not mean that patients should be involved in every minute decision about medical care; rather, they must be empowered to decide on the course of therapy.214

By “minute decisions” we can think of common diagnostic interventions such as blood-work or standard practices to correct minor peripheral issues such as fluid imbalances and so on, things that most people (barring some type of unique objection) would not question as being helpful

212 Abdool 2015 213 Kannan 2014: 179 214 Sox 2002: 244

90 and required to reach their health goals. Again, as with “disclosure,” we can say that by

“completely and honestly informed” is meant that all the details of their health condition are revealed and discussed, leaving nothing out. Is this a strict obligation?

According to the College of Nurses of Ontario (CNO) “Confidentiality and Privacy -

Personal Health Information - Practice Standard,” there is room to withhold information from patients: “Although clients have the broad right of access to their personal health information under PHIPA, they may be refused access. Possible grounds for refusing access include the following: …it may present a risk of serious harm to the treatment or recovery of the client.” 215

It is not just under the condition of “harm,” but rather “serious harm,” and also being of the kind which interferes with their health status. According to the Canadian Medical Association (CMA) policy on “Principles for the Protection of Patients’ Personal Health Information,” “[h]ealth information may be withheld from a patient if there is a significant likelihood of a substantially adverse effect on the physical or mental health of the patient or substantial harm to a third party.”216 Similar in principle but using “substantially adverse effect” instead of “serious harm,” we might conclude from these two policy documents that there is a threshold of potential harm that needs to be met to justify withholding information in our jurisdiction. These standards are slightly more nuanced than what the Indian High Court Judge Kannan mentions, as shown earlier, with regard to harm. Beauchamp and Walters give perspective as well:

Very few writers on medical ethics have regarded truth telling as an absolute obligation, especially if telling the truth would in the circumstances cause a patient’s delicate condition of health to deteriorate or collapse. Nevertheless, almost everyone now agrees that there is some duty of veracity in medicine and that it derives from the respect we owe to autonomous persons.217

215 CNO 2009: 6 216 CMA 2011: 2 217 Beauchamp/Walters 1989: 371

91

These writers mention the type of harm as being that which causes health status decline and if we harken back to Hooker, we need to ask what the actual likelihood of decline is when certain types of healthcare information is shared. Although my informants also mentioned health status decline and included examples of such, which are compelling, the more subtle harms of the types mentioned by them such as worry, nervousness, shock and so on might not be enough to meet the standards of serious harm or substantially adverse effects.

Conclusion and Informant-driven Strategies for Management of Healthcare Information Sharing

Hindu, Jain and Tibetan Buddhist adherent and HCP cohorts in this study all have those who feel that there are times when it is both justifiable and good practice to withhold certain types of healthcare information from patients at the end of life under certain conditions.

Informants indicated that there are times when sensitive medical information is withheld from the patient, and directed instead towards the family first, variously by those in the circle-of-care triad: sometimes it is by the healthcare team, and at other times it is at the request of family members or by request from the patient.

From the literature it seems that disclosure also is not an absolute duty, but that both the requirements for clinical information sharing and the standards for justifying nondisclosure or underdisclosure are variable according to jurisdiction. Some requests might not be under circumstances where there is a likely and somewhat adverse result and thus not meet the threshold of harm that are called for in some regulatory documents. This might make some requests for withholding medical information by South Asian religious adherents in Canada more difficult to fulfill than others.

92

In our local clinical settings, when there is a request from someone to withhold information from a patient, the standard of care is to ask the capable patient what information they would like to receive or not. Healthcare teams can help facilitate the management of conversations, but even with an incapable patient, SDMs do not have a “right” to control information as they see fit.

As for informant conceptions with regard to the potential results of receiving medical bad news, worry or distress was given as the main possible detriment to both patients and families, but for patients there also was added the potential for health status decline. Informants gave the primary potential benefit to patients from receiving medical bad news as preparedness for death.

In the Indian context, my informants had many ideas as to how to best approach the management of healthcare information sharing. Likely unsurprising, a Jain physician in Delhi suggests treading lightly with difficult information: “If they ask, answer cautiously.”218 Three

Jains in Jaipur, including one female, offered a case-by-case approach. First: “Be flexible. Some people could be told, others could not be. Depends on their mental condition.”219 Next, a female who has had much experience with her own health challenges, wheelchair-bound and married to a pediatrician, says: “It is hard to say based on what kind of condition people have. There are different ways of having death.”220 And lastly: “If a severe condition, then not fully informed. It depends on severity. In general, people are fully informed.”221 A Tibetan Buddhist physician in

Dharamsala also approaches patients according to their unique context:

We tell patients about serious illness. We listen to family requests, and it depends on what I think the consequences will be: if I tell truth will it make a negative or positive impact? It depends on their ability to accept the truth, including accepting death. It depends on their

218 ND-111114-JMD-003 219 J-112614-J-008 220 J-120414-J-013 221 J-122514-J-021

93

mental state. If they are stressed I would not want to speak too directly to them, but speak subtly that the “condition is serious” because being direct would harm more.222

The LTWA Head of Research and Translation Dr. Peltsok is quite clear about what such conversations should ideally look like: “The doctor and a responsible person should talk about the merits and demerits, about the patient’s situation having hope or no hope…they should discuss. If the patient can make decisions they should talk together, and the parents represent them.”223 He suggests a collaborative risk-benefit analysis of medical interventions in the context of the prognosis involving the physician and close ones to the patient, with some involvement of the capable patient. The Joint Secretary of the CTA Department of Health was the lone informant suggesting preventive measures: “Arrange counseling before telling them. Even some cancer patients need counseling. When the time comes, then can tell them in a good way.”224

There is Tibetan Buddhist scriptural precedent for a type of skillful deployment of bad news, specifically with regard to letting a family member know that a loved-one has died, from the Blue Compendium of Geshe Dölpa, an early Kadampa master who lived between the eleventh and twelfth centuries in Tibet. Geshe Dölpa was a disciple of Geshe Potowa, who in turn was a disciple of Geshe Dromtönpa who in turn was a disciple of the Indian Buddhist master

Atisha Dipamkara Shrijnana. Atisha revitalized Buddhism in Tibet in the early eleventh century, established the Kadampa tradition as well as composed the first Lam Rim text Light for the Path.

Geshe Dölpa’s Blue Compendium belongs to the same genre of texts begun by Atisha, that of

Lam Rim or stages on the path. Geshe Dölpa’s text has this: “When we begin to contemplate that all phenomena are empty, we must begin step by step, not in one instant, as in the cases of telling

[the king] that the queen has died, taming cattle, the [father reclaiming his] lost son, and entering

222 DSL-040815-BMD-42 223 DSL-032615-BPHD-35 224 DSL-032715-B-36

94 the ocean.”225 The translators give helpful commentary from a twelfth century disciple of Geshe

Dölpa, who fleshed out the terse text of his master, in an endnote:

Lha Drigangpa…tells the following stories: (1) A king had a beautiful wife. While he was away fighting a war against a neighboring kingdom, his wife died. The clever ministers found a way to break the sad news to the king without disturbing him too much: They sent a messenger to tell the king that the queen had got an abscess on her eyebrow. A little later, another messenger told him that the abscess had become much bigger, and so on. When the king was told that the whole head of his wife had become one big sore, he wished that she might die. When he was finally told that the queen had died, he was not distressed about this news.226

The other three other examples are also expanded upon by Lha Drigangpa, and although not specifically speaking to the delivery of the type of news we are concerned with here, they all are concerned with a gradual and progressively staged manner of introducing either information or changes to the body’s environment. This is employed by Geshe Dölpa as a metaphor for a gradual introduction to the nature of reality since, if done too quickly, the concept of emptiness can lead to the misconception that phenomena do not exist at all which can produce either the extreme of fear or a nihilistic view, both of which can interfere with the development of wisdom.

If we apply the moral philosopher Hooker’s concern with deception entering into healthcare information disclosure, we might wonder if the king’s ministers in Geshe Dölpa’s story were deceptive. We can consider how lying is defined in Buddhist discipline, which some iterations have as: saying something is so when it is not, or saying something is not when it is so. It is not clear from the narrative if the abscess mentioned was actually a progressive condition that was the cause of death or not. If so, one might argue that nothing the ministers said was untrue, but that the timing of the stages of the illness were simply omitted. If not, then it was a clever ruse involving some deception that still had the intended effect of informing the king with minimal emotional disturbance. Regardless, the point remains clear: tact and timing are recommended in

225 Dölpa et al. 2015: 86 226 Dölpa et al. 2015: 649

95 the delivery of bad health news both by contemporary Tibetan Buddhists and Tibetan Buddhist scripture.

And on the same note, we end with the Personal Physician to H.H. the Dalai Lama Dr.

Sadutshang who comments on both timeliness and tact as needed in order to disclose sensitive healthcare information in the best way: “at the right moment should be divulged…the art is how you tell them. That is why without the art, medicine is just half its value.”227

227 DSL-040715-BMD-41

96

CHAPTER 3: “Is it Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian Ritual Fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards

Introduction

This chapter explores end-of-life practices, both those ritualized by certain South Asian religious adherents and medicalized in health care systems, as they intersect with religion, biomedicine and the law. There will mainly be a focus on the Jain and Buddhist traditions but with some cross-talk relating to fasting, and pressures to fast, in Hindu contexts. In particular, though, I will interrogate the question of whether accusations of these various ritualized EOL practices being forms of suicide are reasonable or not. The chapter will be laid out in three sections: (1) Jain voluntary fasting, immobilization and meditation at the end-of-life

(sallekhanā228); (2) Buddhist voluntary fasting, immobilization and meditation at the end-of-life

(tukdam229); (3) a comparison of the two as social phenomena. In the first section, sallekhanā will (1a) be clarified using informant perspectives, followed by (1b) outlining some key contemporary moments in Indian public discourse and law with regard to sallekhanā. Closing our the first section will be a (1c) reframing of sallekhanā using some bioethical approaches in an attempt to address the concerns of critics who see it as a form of suicide and have grave concerns around protecting vulnerable elderly. This will be done by examining some safeguards and oversight that come with Medical Assistance in Dying (MAiD)230 as found in Canada (and informed by some other jurisdictions). From this will be the suggestion to implement testing for

228 Sanskrit and literally meaning “emaciating the body and the passions.” 229 Wylie: thugs dam. Tibetan and literally meaning “holding something good in the mind.” Thanks to Torontonian ex-pat, Buddhist monk and interpreter Ven. Jamyang Khedrup, for providing this translation from Geshe Sonam Ngodrup of Maitreya Instituut, Amsterdam. 230 Government of Canada. Bill C-14, 2017.

97 voluntariness and mental capacity, and ensuring the offering of sufficient information by religious leaders involved in assisting adherents with sallekhanā in a similar way that ought to be done by medical providers who might provide MAiD. These would all be for the purposes of the person being able to make an informed decision for something that is irreversible. A form of oversight will be suggested as well, in the form of case reviews. After safeguards and oversight, three conceptual approaches which influence medicalized EOL care delivery will be offered: sallekhanā as a form of foregoing life-sustaining measures; sallekhanā as something allowing for comfort measures in the form of pain and symptom control, if requested by the person, similar to that found in hospice palliative care; and testing the permissibility of sallekhanā against the rule of double effect (RDE).

This analysis was explicitly requested by a Jain community in India in the wake of legal activity by such detractors, and are two areas of the practice with which I have shared concerns with those who criticize it and which, in my view, are easily remedied to protect voluntariness and pain-free dying. Informant perspectives on pain management and attitudes towards hospice palliative care will be included in this section. In the second section, corollary Buddhist practices engaged in by some Tibetans (but with roots in Indian Buddhism) will be clarified and contrasted to those of the Jains in an attempt to find an answer as to why Jains have been targeted for legal action and not Buddhists, given that their practices are so strikingly and impressively similar.

Although I have chosen to use only the Indian data, because of the sheer volume of material collected and the necessity to complete this manuscript in a timely way, I continue to see this study as one which can be helpful for South Asian religious adherents and their health care professionals and caregivers wherever they find themselves, including Canada which has

South Asians as major patient demographics. As with the previous chapter “Shall We Tell the

98

Patient?” Blocking Bad News in End-of-life and Health Information Sharing, this chapter also aims to provide insight into how religious adherents might be influenced in their personal approaches to EOL decision-making, but in this case in relation to unique and exemplary ritual

EOL practices.

Part 1

Jain Voluntary Fasting and Immobilization at the End-of-Life: sallekhanā

Some Jains ritually fast at the end of life in a rare and exemplary religious practice with ancient origins, one which continues today in contemporary India. Despite its rarity, fasting in general is embedded into the Jain way of life and those who approach death in this manner are deeply admired and celebrated. Most Jains, if not all, aspire to voluntarily stop nutrition, hydration and ambulation in preparation for death as a mode of consummate non-violence

(ahiṃsā). This is because every action, to a greater or lesser degree, is seen by Jains as impinging upon life, which in addition to humans also includes animals, micro-organisms, plants and elemental beings. To solve the dilemma that being alive requires some harm to other beings as well as necessarily resulting in commensurate impediments to spiritual progress, some Jains (and not only adepts) progressively opt-out of bodily activities by taking ascetic vows. These vows can be taken by householders or monastics, but for monastics these vows are in addition to the major vows of discipline they already hold. In consultation and with the permission of a religious leader, or the family in the case of a householder, there is general agreement that this final practice can only be done under certain conditions which leave the adherent unable to perform their religious duties any longer: terminal illness, intractable pain, or a disaster (such as drought or war). Jainologist and former Colonel, Śreyas, gives a list of eligibility criteria:

99

1. Arihā231 (Eligibility) [f.1 Arhaḥ yogyaḥ,232 Bhagavatī Ārādhanā233 p.105] - The conditions that make a person eligible for accepting this vow (of Savicāra Bhaktapratyākhyāna-maraṇa234) are - a. Extreme old-age that hinders the monastic practices, b. Suffering from incurable disease or terminal illness [f.2 Uvasaggā vā deviyamaṇussatericchiyā jassa, Bhagavatī Ārādhanā vs. 70] c. Afflicted by calamities wrought by gods, humans or sub-humans, d. Inability to hear and walk due to weakness or disease. It clearly lays down that those who are able to observe their monasticism properly ought not to undertake this practice even if prompted by others.235

There are three increasingly strict iterations of the vows, all of which require the stoppage of eating. What differentiates them is three-fold: whether the fast allows for water or not; the extent to which one can receive help from others; and how much and where bodily movements can be undertaken. Johnson, who translated “a Sanskrit epic poem written by in the twelfth century”236 entitled Triṣaṣṭiśalākāpuruṣacaritra,237 gives the most thorough rendering of the subtleties of the three types of vows that I have found thus far:

231 Sanskrit for “Eligibility (Śreyas 2007: 127).” 232 This was difficult to translate but seems to be closest to suitably worthy (spokensanskrit.org), with arha as “deserving…worthy (Williams 2008: 93)” and yogya as “fit or qualified for, able or equal to, capable of (Williams 2008: 858)” or “suitability (Ranganayakulu).” This fits the context well. 233 Ārādhanā is Sanskrit for “worship (Williams 2008: 150) and ārādhana (without the final long “a”) has the same meaning plus “attainment…accomplishment (Williams 2008: 150).” Bhagavatī means “fortunate (Williams 2008: 743, spokensanskrit.org),” so the two words together can mean “fortunate worship” or “fortunate attainment.” However, here, this is a reference to the title of a Jain text: “The Bhagavatī Ārādhanā is one of the most valuable ancient works belonging to the Jaina tradition. It was composed by Śivarāya or Śivakoṭī...in the second century AD and contains some 2170 verses in Śaurasenī Prākṛt. According to its author the title of the work is Ārādhanā, bhagavatī being an honorific designation to qualify the practice of ārādhanā... The [Bhagavatī Ārādhanā] deals mainly with the different types of ārādhanā, including the practice of the three jewels (), () and samādhimaraṇa or voluntary peaceful death. [Bhagavatī Ārādhanā] is the most complete treatise devoted to the latter subject (Jain 2015: 21).” Jain doesn't give a meaning for ārādhana and “worship” would, in my view, not be the best fit for the three categories of practice laid out. So, loosely, this title could mean something more akin to “fortunate [practices towards] attainment.” 234 Parsing out the words in this phrase gives savicāra as “that to which consideration is given (Williams 2008: 1190),” bhakta as “to engage in (Williams 2008: 743),” pratyākhyāna as “overcome (Williams 2008: 676)” and maraṇa as “death (Williams 2008: 789).” So, this can be translated as “consideration of engaging in overcoming death.” Bhakta also can mean “worshipper (Williams 2008: 743) or “devotee,” but I would not translate this phrase as “consideration by the devotee in overcoming death” since there is no possessive particle. 235 Śreyas 2007: 127 236 Johnson 1931 237 “…literally ‘The lives of the sixty-three illustrious People’(Johnson 1931).”

100

1) Bhaktapratyākhyāna:238 in this he makes a confession to his [preceptor] in presence of

other sādhus, adopts saṃlekhana, and rejects all food. He may or may not take water. He

is allowed to move, if able; and if not able, can be assisted by others.

2) Iṅginī:239 he makes confession, etc., as before. Rejects water also. Is allowed to move

within a limited space, i.e., from shade to sun and vice versa; but cannot be assisted by

any one else.

3) Pādapopagamana:240 as before, but is not allowed to move at all. He goes to a

mountain, cave, etc., and remains motionless like a tree until he dies. All the

commentators have adopted this Sanskrit for the Pk.241 pāovagamaṇa, hence the

comparison with a tree.242

Thus, all the sallekhanā vow-types involve abstaining from food, but the first version but is the only one which allows for water, unrestricted movement and assistance from others. The second version of the vow allows for movement but with restrictions, and some descriptions of this vow- type state that although others cannot help the practitioner, they can help themselves. Those who undergo the first vow-type often receive massage from fellow monastics or same-gendered fellow Jains, so for the second vow-type we might think of auto-massage as a way someone could help themselves. Finally, the third and strictest vow-type restricts all activity and thus involves abstaining from any oral-intake, assistance from others or oneself, and all motion.

238 As mentioned in footnote 943, “engaging in overcoming death.” 239 This term has been difficult to translate but the root “iṅg” or “iṅga” is given as “to move (Macdonell 1893: 45)” and certainly relates to this iteration of the vow which allows for limited motion. 240 Sanskrit for “the abiding (Williams 2008: 618).” 241 Short for “Prakrit.” 242 Johnson 1931

101 a) Informant Views of sallekhanā

Here I will share some significant thoughts from some of my Jain informants on the topic of sallekhanā. In what was only my second interview, while in Delhi I visited a dear friend and the director of the ISJS, Dr. Shugan Jain. Shugan is an adorable older gentleman, and a powerhouse in promoting Jain studies. Each year he organizes several academic groups to come to India and live in compounds and research centres in such cities as Delhi, Jaipur and Varanasi. We met when I attended their summer school in 2010 with other graduate students and faculty from around the world. The program is a combination of classes, pilgrimage and research for a publishable paper. This truly was my entrance to Jain Studies, and also my first opportunity to do research on sallekhanā. Since there was already a code of discipline required for participation, such as not taking intoxicants and so on, I decided that I would take temporary

Buddhist monastic vows for the duration of the research trip but asked Shugan for permission first, to which he agreed. Shugan also knew that I had been a monk in the past, but throughout the trip kept introducing me as a monk, despite my many attempts to clarify that I was no longer a monk and was merely holding temporary monastic vows. It was a bit uncomfortable for me, and Shugan seemed very excited at the idea of someone that was part of the trip holding to some degree of ascetic discipline, so I had to just go with it and gave up correcting him. We get on famously, and he has always been very supportive of my Jain Studies pursuits, and his wife Uma is also quite wonderful.

I was still working out my routines for coming and going from interviews and remembered that the subway didn’t bring me as close to his house as I would have liked, so I hopped into a rickshaw. I also assumed I could get some food in the area. Alas, I was running out of time, and there was nowhere close to eat so I ended up gulping down some freshly squeezed

102 juice from a vendor across the street. We met in Shugan’s office which is in the basement of his house, which also has a few other office spaces for ISJS staff. It is always a bustling place.

Shugan did offer me food, but from one of the staff’s tiffin243 so I politely refused. During our interview, Shugan offered a spontaneous translation of an excerpt on sallekhanā from the

Samādhi Bhāvana244 by the twentieth century Pandit Shivram of Rewari Haryana:

Oh Lord (self), I always contemplate that at the end of life I won’t forget you (soul). If I have an enemy I should make him forgive me, make anger disappear, and with equanimity I should have my family forgive me. Slowly I give up food/water, thoughts of activities, longevity or are abandoned and I become so strong that I don’t have to break vows. I pray my passions don’t become dominant, that I can make them dormant, and that the pain caused by past deeds do not give me much trouble. May I always contemplate soul, to become supreme soul, liberated. Reciting trimantra,245 with motivation, surrounded by holy people telling me about soul, to become stronger I focus on soul rather than the body. Neither wishing to live long or die immediately, I reduce attachment to family/friends (disturbing thoughts). I should reminisce on the past pleasures of life becoming a source of pain. I should not wish to expand worldly attachments: right belief, knowledge, conduct. Immersed in self/soul, self-soul disappears, and I die peacefully. If I do this, life is made worthy.246

Some key themes of the practice appear here such as: the importance of mental and emotional stability by way of asking for , as well as working on negative emotional states to bring about a balanced mind which includes neither wishing for life nor death; the emphasis

243 This is a stacked metal lunch-box of sorts, with each compartment ingeniously segregated from the rest. 244 For samādhi Williams gives “profound or abstract meditation, intense contemplation of any particular object (so as to identify the contemplator with the object meditated upon…)” and “intense absorption (Williams 2008: 1159).” And for bhāvana he gives “producing (Williams 2008: 755)” so the title can be translated as “cultivating meditative absorption.” 245 Sanskrit for “three .” It is unclear what this is precisely referring to in a Jain context. Some sources refer to these three mantras as one that is Jain, another to Vasudeva or (an Earthly incarnation, or avatāra , of one of the principal gods in classical Hinduism, ) and a third to Shiva (another of the three principal gods in classical Hinduism, the third being Brahma). Although there seems to be some veneration of the Hindu goddess of wisdom of music Saraswatī , whom I have seen depicted in multiple Jain temples, I have not come across the recitation of mantras directed towards the major classical Hindu gods in Jainism. Because this was translated in- person and orally, it could have been a transcription error on my part and might very well be a reference instead to the Five Homages or pañcanamaskāra mantra which “[u]nlike many mantras…has specific meaning and consists of five statements in Prākrit addressed to the five central ascetic figures of Jainism…omniscient ones (arahat)…liberated ones ()…teachers (āyariya)…preceptors (uvajjhāya)…all monks (sā[d]hu) (Dundas 2002: 81)” since it is seen by “[c]ontemporary Jain writers…as summing up the essence of the doctrine and as subsuming all other mantras” as well as being “a panacea for all physical ills, superior to western-style allopathic medicine (Dundas 2002: 82).” 246 ND-111014-JPHD-002

103 placed on homage to various categories of religious adepts, and contemplating religious topics with the support of co-religionists; encouragement to take a gradual approach to the fast which includes abandoning medicine and thoughts of activities which we could presume implicitly means that activities themselves are also to be weaned.

This next informant is a freelance philosopher in Jaipur who has published Jain studies material, including on the topic of sallekhanā, Mr. Surendra Bothara. He had so much to say that we had to meet on two separate occasions in his joint-family shared accommodations within the

Pink City of Jaipur, where we both sat or reclined on cushions in the living room. He says this:

The sallekhanā concept is misunderstood. “Embracing death” is not the concept. The basic concept is that you are mentally preparing yourself to peacefully leave this Earthly abode. In modern idiom: it is trying to make death comfortable mentally. What hospice is doing is the same but it is physical only. If these things could be combined, people in both traditions would disagree with the other. An interface needs to be created.247

Surendra here clarifies the common misconception that sallekhanā is entering into the fast seeking death by saying that, rather, it is a means of preparing for an ideal passing. He also gives his fascinating impression that a comfortable death in a hospice approach is with a pure focus on the physical, and calls for dialogue between adherents and those in hospice work or part of the movement.

My next informant was also quite loquacious and similarly required two sessions to capture all of his thoughts. I met Mr. Naveen Kumar Jain in the Āyurveda248 clinic of Sri

247 J-112614-J-008 248 Given by Williams as “the science of health or medicine (it is classed among sacred sciences, and considered as a supplement of the atharvaveda; it contains eight departments: 1. śalya or (removal of) any substance which has entered the body (as extraction of darts, of splinters, etc.); 2. śālākya or cure of diseases of the eye or ear etc. by śalākās or sharp instruments; 3. kāya-cikitsā or cure of diseases affecting the whole body; 4. bhūtavidyā or treatment of mental diseases supposed to be produced by demoniacal influence; 5. kaumāra-bhṛtya or treatment of children; 6. agada-tantra or doctrine of antidotes; 7. rāsāyana-tantra or doctrine of elixirs; 8. vājīkaraṇa-tantra or doctrine of aphrodisiacs (Williams 2008).”

104

Vaidya-ji249 in the Pink City. He was so keen to talk that he came to my guest-house that same day to confirm our appointment and give me a book on Jainism written by his father. Naveen also had me over to his family’s home for dinner, which was a delight. When I arrived after surviving terrible evening traffic through Jaipur, his grandmother was watching a lecture on a dedicated Jain channel, and clapped and called out during important moments. Later, I felt awkward when the women of the household had the men eat first before eating themselves. At one of our interview sessions, very large black-faced monkeys with white fur250 came to the guest-house rooftop to cause trouble, much to the chagrin of the cook who chased them away!

Here are Naveen’s thoughts on sallekhanā:

In the case of sallekhanā, it is essential when the person wants to die through this or samādhi that he leaves off worldly things and belongings step-by-step…such as becoming detached from their home, relatives. Senses move inward, self-centered relation with one’s own soul. First one leaves edible things, grain, then fruits, then survive only on juice/water, then leave this, then live only on air, and leave all efforts to survive… It is actual death if one dies without tension and forgetting things, if pleasantly die in samādhi sallekhanā they will definitely get a good birth in very good place… You will be surprised to know my mother says “oh God, I will take no water or meal. If I get up I will take them again.” This is partial, nighttime sallekhanā. In Jainism every saint says: ante samādhi maranam - in the end, I will die in meditation. Death is not the cause of misery, it is not seen as an unfortunate incident, but rather as a festival. I asked Vaidya-ji a question: what about children who have illness from the beginning? He said they were not thoroughly cured from their previous birth, died unconsciously, and have brought diseases from the past. Sallekhanā is to eliminate these past karmas, and to have no fear of death… Normally it is twelve years for sallekhanā, but some say it is if you reach a certain age. If after twelve years and still healthy then they continue, it is not necessary to die. They are prepared and not afraid. Like a soldier on the warfront fights with enemies, they are not afraid despite knowing they can also die in the encounter but does not go back, they are prepared. It is the same as doing work as human being/soldier, the same as a Jain saint not being afraid of death, to accept death with cheerful calmness. Sallekhanā means purification.251

249 Vaidya is Sanskrit for “physician.” The “ji” was added as an honorific suffix to Dr. Kumar’s full name by locals, and they also referred to him simply “Vaidya-ji.” A Hindi gender-neutral name or title suffix, when used out of respect as it is for Hindu and Jain monastics, senior relations and even important places, it functions like “respected so-and-so/such-and-such.” “Ji” is also used with names colloquially, however, out of politeness and functions like “Mrs.” or “Mr.” Tibetan has an analogue in the suffix “la” (Wylie: lags) which is used in an almost identical manner. When not used with names, “ji” and “lags” can be also used in various ways in both Hindi and Tibetan languages for respectfully (or “elegantly”) affirming or negating something, as with the verb “to be.” (Das 2000) 250 These gray langurs are also common to the higher altitudes of Dharamsala. 251 J-112714-J-009

105

Fascinatingly, Naveen also mentions a gradual approach sallekhanā, with both the inner and outer aspects of the practice. He explicitly takes us through a method of leaving off certain types of food and liquids in a particular order. He gives a good rebirth as a necessary outcome of sallekhanā, and makes mention of a short daily version of taking the vows before sleeping in case one does not survive until morning. There is commentarial support for this temporary version of the vows, as seen here: “The temporary conditional Santhara...either in an emergent circumstance endangering his life or daily while retiring to bed in order to safeguard their spiritual interests in case something untoward happens during his sleep or at night.”252 The same study allows for taking the vows under unconventional and hasty circumstances: “Permanent

Unconditional Santhara...can be undertaken either in the face of an imminent danger or in the case of incapacitation of the body for various reasons.”253 Naveen also sees death as something to celebrate, and this festival mood is certainly demonstrated during funerary rites of those who have engaged in sallekhanā. His question to the natural doctor at whose clinic we met is a common one when people are exposed to karmic theories, which is how to explain congenital illness. Naveen seems to be sharing Dr. Kumar’s explanation which is that such illnesses come from previous lives, and concludes that sallekhanā purifies karma from the past. Naveen mentions a twelve year fast, which is the fullest version of the practice that might seem surprising in its length. This type of the fast obviously does not mean that the person ceases eating and drinking and lives for twelve years, but that they reduce the amount of substances ingested and leave off certain types of nutrition over time. Naveen also makes it clear that through this process, the practitioner becomes fearless in the face of death.

252 Śreyas 2007: 56 253 Śreyas 2007: 57

106

Lastly I will share some thoughts on sallekhanā from my sole Jain monastic informant, a nun named Param Pujya Gāninī Āryika Pratya Mati Mātā ji who has been a nun for three decades and reportedly has supported some through the process of sallekhanā. The interview took place in the heat of the midday sun on the lovely grounds of a Delhi temple Shri Kund

Kund Bharti and was translated by a Jain Delhiite with whom I connected through social media, and who in addition to setting up this interview also connected me with his father for an interview. Mātā-ji held a peacock-feathered broom for brushing away insects before sitting (and blessing disciples), barefoot with a shaved head and wore white robes but without the face-mask of the Śvētāmbara254 sect as she belongs to the Digambara255 sect whose male monastics are naked and are, generally, more strict in conduct. This was an interview where I decided it might not be helpful, or even possible, to get through the questionnaire so opted to do the open interview but only after doing some of the demographic questions. When I asked Mātā- ji about her background and where her parents were from, she strongly refused to answer and said that she does not talk about negative things. I have thought about this a lot since it happened, both to understand her reaction, since I have not experienced this with monastics of other traditions, and out of some guilt that I may have unintentionally offended her. Unlike with

Buddhist, Hindu and Christian monastics, I have had very little direct contact with Jain monastics and can only presume that, as a member of a strict order, that leaving the householder life includes leaving off even discussing life before dīkṣā,256 the initiation ceremony through which one becomes a Jain muni, as it might make for fondness for that lifestyle. This would be very helpful for the Jain monastic in terms of the stability of their ordination, since Jain

254 White-clad sect of Jainism 255 Sky-clad/naked sect of Jainism 256 Sanskrit for “initiation (Williams 2008: 480).”

107 monastics, unlike other traditions, cannot leave the order and remain ordained for life. She had this to say:

We are saints. When our age is completed, and the body is very weak, we can’t walk, see, not able to do religious things,257 we think that the body is not working properly, then it is time for sallekhanā. Body and soul are different, like the person and the house. If the house is old we build a new house. Qualities are in the soul, the body is only a medium… Leave off eating things, now also we eat only one time per day, ten/ten thirty a.m. Sallekhanā: we leave off one thing at a time, solid then liquid, one or two liquids, coconut water, water, buttermilk. Reducing the number of items, lastly we leave off water. When we don’t even sleep on a mat, we have left all wordly things/luxury. The soul goes to heaven, not hell. Things are not ours, soul is the only thing that is mine, nothing else. Puṇya258/karmas/merit - proper merit brings a heavenly birth, from not harming jivas, kṣamā,259 asking forgiveness from all living beings, single-sense to five sense. Only muni,260 śrāvaka/śravika261 can take sallekhanā. It is not suicide, it is acceptable. If old they do it, they must do it. After taking āhār262 (food) we take sallekhanā till eight a.m. the next day, leaving the four types of āhāras (liquid, solid…). This is sallekhanā for twenty hours (there are micro and macro types).263

Mātā-ji refers to Jain monastics as “saints” in English, which is a common habit of Jains when translating “muni” which generally means a mendicant. The Buddha of this age is referred to as

Shakyamuni, meaning sage of the Shakya clan. Unlike in some other traditions, such as

Catholicism which uses the term as a posthumous title on the basis of some confirmation of spiritual ability, here the term is not as loaded in its use and is certainly not meant to be aggrandizing. Synonymous with muni, a non-gendered term, and commonly used for monastics in Jainism is the gendered term sādhu for males and sādhvī for females.264 The venerable nun gives the precondition of sallekhanā being a loss of bodily function and the ability to perform

257 Meaning no longer able to practice their religion to the extent they would prefer, such as through keeping the rigorous Jain monastic vows. 258 Sanskrit for “the good or right, virtue, purity, good work, meritorious act, moral or religious merit (Williams 2008: 632).” 259 Sanskrit for “patience, forbearance (Williams 2008: 326).” 260 Sanskrit for “a saint, sage, seer, ascetic, monk, devotee, hermit (Williams 2008: 823).” 261 Sanskrit for “disciple (Williams 2008: 1097),” given here in two forms, one for each gender. 262 Sanskrit for “food (Williams 2008: 163).” 263 D-011015-J-025 264 Williams gives thirty definitions, but here is Sanskrit for “sage (Williams 2008: 1201)” or an ascetic or mendicant.

108 religious duties. This is often given as the impetus for the practice since if one has vows that one is unable to keep, then there is the accumulation of bad karma from such breaches in conduct.

Mātā-ji distinguishes between the soul and the body and that the vessel for the soul needs replacing when worn out. She then gives us, as with some of the other informants, a step-by-step reckoning of the fast and the importance of forgiveness. Mātā-ji gives a result of the fast being a heavenly birth and that only members of the faith can engage in sallekhanā, both monastic and lay. She clearly states that the practice is permissible and is not a type of suicide. In addition to the unlimited fast which she refers to as “macro,” Mātā-ji also speaks of a temporary or “micro” version of the sallekhanā vows. In the case of Naveen’s mother, it would be overnight but for a monastic who eats only once a day, that short sallekhanā vow would last almost a full day.

b) Key Contemporary Moments for sallekhanā: some public discourse and legal milestones

“Sallekhanā is the best you can do, it is hard and difficult but the best way to go…why stop that? They feel it is suicide, it is not suicide!”265 - A Jain in Toronto

Interchangeably referred to as sallekhanā (emaciating the body and desires), santhara266

(literally “bed of hay” but generally meaning the death-bed), and samādhi-maraṇa267 (death in equipoise, or meditative absorption), the Bhagavatī Ārādhanā - the manual on monastic conduct composed by Sivarya around the second or third century C.E.268 mentioned earlier - refers to it as bhaktapratyākhyāna-maraṇa or “engaging in overcoming death.” The practice by whatever name in general is typically rendered into English as “Jain fasting unto death.” In part due to the

265 T-083115-J-059 266 Dictionaries simply give “suicide by fasting [Jaina religious practice] (spokensanskrit.org)” for this Sanskrit word, but many Jains have told me that it literally means “bed of hay,” even though I cannot find a connection between the words for “bed” and “hay” and santhara. Generally it is thought to mean the place of death. 267 Sanskrit for “death in meditation.” 268 ISJS 2009. This document also states that this dating is “[f]rom the linguistic point of view” since “from the context and the content it is established that this work is composed in around 2nd or 3rd century A.D.” Further, the text definitely pre-dates the seventh century C.E. since “Aparajitasuri has written a commentary in Sanskrit in the 7th century” entitled “Vijaodaya Tika.”

109 causal relationship implied by this particular way of translating, and the “embracing death” misconception mentioned by Surendra, there is much variety in how the practice is understood, including from within the Jain traditions themselves and especially by outsiders who criticize the practice. In this regard, several key historical moments in discourse around what I will henceforth refer to simply as sallekhanā269 are worth mentioning.

Justice Tukol’s influential paper “Sallekhana is not Suicide,” a published lecture from

1976, was meant to quell fears of this religious EOL practice being illicit.270 One of the major arguments of the paper is that suicide implies a socially alienated death whereas sallekhanā, rather, is often a very social event.271 For example, support in the process is offered to monastics by fellow monastics (and, when possible, laypeople visit monastics to pay their last respects), by monastics and laypeople alike for householders, and funerary rites are well attended and highly celebratory in nature. Families also often put out full-page ads in newspapers announcing the practice being performed. However, when looking at such texts as the Kalpa , 272 a hagiographical account of the founders of Jainism across the ages dated around a century and a half after the passing of Mahavira in the late fourth century BCE,273 many Jain saints historically engaged in the practice in isolation, such as on a mountain. Often added to this emphasis on the social nature of sallekhanā in general, as a distinguishing factor between it and suicide, is an appeal to the state of mind of the person being positive, often expressed as wishing neither for life nor death, rather than a negative state of mind such as a motivating self-hatred. Appealing to

269 In my experience, Jains actively use all three terms for the practice interchangeably or all together depending on the context, but seem to prefer to use the term sallekhanā colloquially. On the other hand, the media often uses the term santhara instead, and often the practitioner undergoing this practice is referred to also as a “santhara.” 270 Tukol 1976 271 Tukol 1976 272 Literally can be translated from Sanskrit as “Text of the Age,” with kalpa being a very large unit of time: “a period of four thousand, three hundred and twenty millions of years of mortals, measuring the duration of the world (Williams 2008: 262).” 273 Britannica 2006

110 a social context and positive state of mind is common among the Jains I have met, including in academic settings, but in my view these rationalizations are not robust enough to defeat detractors since they rely on a normative insider position that is untested by outsiders.

Despite the paper having quite a bit of uptake, Tukol’s efforts did not entirely settle detractors. In 1987 a petition was heard by the Bombay High Court with an accusation of sallekhanā being attempted suicide, but the case was quashed citing that the constitutional includes the right to not live or to be forced to live.274 The Indian Law Commission subsequently recommended amending the criminal code to decriminalize suicide, as Canada did in 1972275 along with carving out exemptions for MAiD in 2015, but in India decriminalization never came to fruition. In 1988 the ruling of the Bombay High Court was criticized by the High

Court of another state, Andhra Pradesh, saying that the right to life does not equal the .276 Personally, I feel that rights language has not yet been helpful for finding resolution on this issue. The proof is the courts continuing to disagree on the limits to the right to life from

“Article 21 of the Indian Constitution, which recognizes the fundamental right to life, personal liberty and livelihood.”277

Next was a 1991 national symposium on ‘Jaina Concept of Samadhi-marana - in Moral,

Social, and Legal Contexts - and Euthanasia’ held at Parshvanath Vidyapeeth Research Institure, a centre for Jain studies in Varanasi. The findings were presented in “A Report from India: The

Jaina Ethic of Voluntary Death” by U.S.-based South Asian Studies professor Bilimoria.278 The small symposium was attended by Jain practitioners (lay and monastic) and scholars, a journalist

Buddhist Studies scholars, a legal commentator, writers, journalists and Bilimoria. The report

274 Bilimoria 1992: 351 275 The Canadian Encyclopedia, date n/a 276 Bilimoria 1992: 352-353 277 Bilimoria 1992: 351 278 Bilimoria 1992

111

Box #2 makes mention of physicians sometimes Rajasthan high court bans Jain ritual offasting unto death attending on sallekhanā practitioners “as the Lalit Sharma, Hindustan Times Aug 10, 2015 legal witness to the ‘natural’ process of the The Rajasthan high court on Monday banned Santhara, a Jain ritual of voluntary and death,” and for the purposes of documentation systematic fasting to death, making it punishale under section 306 (abetment of suicide) of the to facilitate efficient funerary proceedings.279 It Indian Penal Code.

The court, which had last reserved its judgment states that there are approximately five to ten after the completion of arguments on April 23, declared that “Santhara is illegal in the eyes of people who enter into sallekhanā annually but law.” 280 that this is under-reported, something which The ban on the Jain ritual comes after a public interest litigation (PIL) filed by human rights some presume might have to do with the fear of activist and advocate Nikhil Soni a decade ago. The activist claimed the ritual is a social evil and legal reprisals over the contentious practice for should be considered as suicide. those who facilitate such events. The group “The court observed Santhara as suicide and said if anybody goes for Santhara on account of religion, a case should be lodged according to debated the role of the preceptor as passive or constitution,” Nikhil Soni said to HT. active in enacting the sallekhanā vows, in The ancient ritual, also called Sallekhana, consists of voluntary starvation to embrace death. relation to moral and legal culpability, and The Swetambar (white sect) community, which practises the age-old ritual, considers it the clarified that there can be up to four monks to ultimate way to attain (release from the cycle of rebirth), when one believes that his life assess a candidate’s readiness and has served its purpose. Practised mostly by elders nearing death or having no desire to live any 281 more, this ritual demands the practitioner to even appropriateness of entering the practice. sacrifice drinking water and is not advisable for young adults or children. MAiD was explicitly mentioned in

contradistinction to sallekhanā since there is

interference with the dying process as

279 Bilimoria 1992: 338 280 Bilimoria 1992: 338 281 Bilimoria 1992: 346-47

112

Box #2a presumably in euthanasia a doctor or a (Sharma 2015 article continued) paramedical personnel administered ‘poison’ to the bed-ridden patient. Besides, it was thought The centuries-old practice of Santhara has been that euthanasia involves interfering with the in the eye of a storm since 2006 when the case biology and chemistry of the body, especially of 93-year-old Keila Devi Hirawat from Jaipur where chemicals or lethal agents are had international media debating whether there intravenously or orally introduced into the body was any place for such a ritual in the modern to arrest the flow of blood to the brain and to world. stop the heart, and other organs.282

Later, human rights activist and lawyer Nikhil Soni and his lawyer Madhav Mishra filed a PIL The group made the interesting argument that with in the Rajasthan high court. One of the concerns raised in the petition was that it is old imminent death, putting aside the toxins used in people, who usually resort to Santhara, and allowing an elderly person to suffer without MAiD, the mere introduction of substances in the medical assistance, food and water is inhuman. forms of nutrition, hydration and medication283 also Jains, however, argue that it is a voluntary act of rational thinking and marks the beginning of causes interference with the dying process.284 The a journey of understanding the inherently painful and flawed nature of earthly existence. symposium participants also considered advanced For millions of Jains in India, the PIL was a direct violation of the Indian Constitution's guarantee of religious freedom. directives for the unconscious person, and some

While opponents of Santhara equate the similar questions we have been grappling with in practice with suicide and argue that it's a fundamental breach of Article 21 of the Indian Canada in relation to MAiD such as the Constitution, which guarantees the right to life, supporters say that the right to life includes a permissibility of minors undergoing the practice, corresponding right not to live. whether mental health illnesses can be an acceptable Jain saints, meanwhile, have voiced strong opposition to the stance by the Rajasthan High Court. underlying diagnosis prompting the request, and

Pramansagar ji Maharaj said, “I have not read substitute decision-making. The report gives some the HC verdict in detail. Therefore, I cannot comment on behalf of Jain community as of worrisome findings of the symposium group with now. Santhara is our holy rite and it is a humble way to depart the earthly world. A regard to waiving consent and allowing for prohibition on it is subduing our religious freedom.” involuntary sallekhanā as they found no reason to

282 Bilimoria 1992: 345-346 283 Bilimoria 1992: 346. Listed fully as “food (nutrients), fire (vitamins), fluids (water and blood), chemicals (medicine), air (oxygen) and so on.” 284 Bilimoria 1992: 346

113

Box #2b prevent minors and the mentally ill from being (Sharma 2015 article continued) granted the fast, with the caveat that a parent or at Tarun Sagarji Maharaj echoed the sentiment. “The decision of Rajasthan high court is quite least a preceptor would provide proxy consent. The unfortunate on santhara Samadhi and given without understanding the principles of Jain suggested breadth of waiving consent, however, is religion. This decision one of the slave decisions of the Free India,” he said. given here:

Acharya Dr. Lokesh Munisagar, spiritual guru of Jain community said, “Santhara is not a way Consent of the recipient is not necessary. (Hence, a to commit suicide. One opts for suicide when case of nonvoluntary terminal fast). One who has in tremendous frustration. fallen in a state of unconsciousness, again, can be given the fast (sallekhanā), even if the person had “This ritual was made for saints who decided to made no requests while she was conscious, though desert their physical body to earn moksha. parents or kin would be consulted. It seemed evident Mahavir Jain had left his body through that ‘consent’, either of the individual or a proxy, or Santhara. Vinobha Bhave did the of the parent, does not seem to be a necessary same. The High Court’s decision is against the condition for commending final fast. This would sentiments of the Jain community.” seem to constitute a case of involuntary sallekhanā, for the fast is administered without the individual’s request or consent. And it can be a quasi-active process also, in that the spiritual representative (ācārya) present beside the infantile or the unconscious patient can undertake the responsibility to commend the following: ‘Now don’t give her food’, ‘Now don’t give her water’, ‘Now the breath may depart in peace.’ The analogy made to a hospital bedside scenario where a doctor might recommend ending intravenous administration of fluid and turning off of the respirator seemed quite acceptable.285

The group suggested consent requirements, even by proxy, are unnecessary for those who cannot

consent for themselves but still felt that some consultation with parents or religious

representatives would be required. It is such an expressed position on involuntariness that gives

detractors grave concern, and worries me as well. In medical settings, it may well be that

physicians in India can unilaterally remove artificial nutrition, hydration and ventilation for the

unconscious person. As explored in the previous chapter “Shall We Tell the Patient?” Blocking

Bad News in End-of-life and Health Information Sharing, the judge and legal scholar Kannan’s

clarification that the priority placed on local medical standards, and real consent in the UK and

285 Bilimoria 1992: 347

114

India slanting decision-making power towards the physician, gives much latitude to physicians.286 However, from physician anecdotes it seems that in practice withdrawal of active medical management in India is not as easy as it is made out to be in this report as removal of life sustaining treatment necessarily requires legal intervention. In my Canadian provincial jurisdiction of Ontario, substitute decision makers must consider prior capable wishes of the person and in the absence of such, the next step in the best interests standard is to consider the values and beliefs of the person. This is not implied in the report, but perhaps can be inferred by the fact that such a person would belong to the Jain religion which, writ large, esteems sallekhanā and therefore might want to engage in it, or at least not be averse to it. However, this inference of presumed shared values remains problematic since it is not a fact and cannot be tested with the unconscious person. The last of the three considerations for Ontarian SDMs for the incapable person, before clinical best interests such as whether starting or stopping a treatment would improve their well-being or not and so on, would be incapable wishes. An example of this is a person with dementia who is incapable with regard to a decision to have a blood-test saying “no” or pulling their arm away when seeing the needle. For the unconscious person there would be no such incapable wishes because they cannot be expressed. All this to say that looking at inter-jurisdictional consent practices can be informative to fill gaps such as those we see here, where collaboration is required but consent by person or proxy is not, nor a prior request, but no other guidance is given.

It is fascinating that the medical analogy of withdrawal was used at the symposium to explain the logic used in relation to sallekhanā. I will justify my application of medical decision- making to Indic voluntary stoppage of eating and drinking (VSED) in the analysis subsections, but suffice it to say that I am not the only one to do so. My suggestions for protecting the

286 Kannan 2014

115 vulnerable through safeguarding capacity and consent, and by way of oversight, will be more fully explained in the subsection dedicated to these issues. Bilimoria goes on to also criticize

Tukol for falling short in his attempt to provide robust legal justification for sallekhanā. He states that Tukol had

no doubt as to the humanity and dignity of the practice. In his view, therefore, no law was being controverted; rather, he saw this as being consistent with the traditional ethical mores of the land. But Tukol did not provide a persuasive ethical argument and his legal justification appeared to be rather thin.287

During the 2010 International Summer School for Jain Studies visiting researcher program that I participated in, our group stayed at the Parshvanath Vidyapeeth Jain Studies centre which hosted the conference in question. The paper I was working on in 2010 was subsequently published in both a journal and a collection of essays. It was referred to at the NLU conference, which happily surprised me but at least confirmed that it had been of some use. This 2010 paper, which explored whether sallekhanā could be permissible (or even possible) within the context of

Canadian secular and faith-based hospitals, was also posted online and Professor Bilimoria commented on the blog. He observed that we have a very similar approach to the topic.

The next important sallekhanā event to mention is the beginning of a Public Interest

Litigation (PIL) in 2006 by a human rights activist citing the coercion of vulnerable elderly and breaches to the Indian Criminal Code prohibition of suicide, abetment to suicide and coercion.

The concern over coercion is not without merit, in my view, and my suggestions to protect against this will be in the subsection on sallekhanā safeguards and oversight. After my field- work was complete and just prior to starting a bioethics fellowship in the 2015 academic year, the High Court of the state of Rajasthan banned the practice on the basis of this PIL, which led to large and noisy protests throughout India. The quote at the beginning of this sub-section was a

287 Tukol 1976: 350

116

Toronto Jain’s response to the ban: “Why stop? They feel it is suicide, it is not suicide!”288 In the same month, the ban was lifted by the Supreme Court of India and the case left for their consideration, remaining unresolved.289

Although the ban was stayed by the Supreme Court, and some calling the application of both the Indian Penal Code290 and the Constitution of India291 as discriminatory due to a disproportionate negative impact on the religious freedoms of a minority community, the case is indeed not closed.

The impasse over the nature of this religious practice gives incentive for thinkers from various disciplines to weigh-in on the topic: from religious adherents of various traditions, to clinicians and academics. As such, due to this legal wrangling and the deep concerns on the part of the Jain community of an essential religious practice being threatened from the outside, in

2016 the ISJS organized a series of international symposia in Chennai, at the National Law

University in Delhi, and at a medical and dental institution in Moradabad, Tirthankeer Mahaveer

University. The three events had different emphases such as religious/social, legal and medical perspectives on the practice and drew from experts in the various relevant disciplines. While a fellow I was invited to speak but was unable to attend the first gathering in Tamil Nadu, a trip which would have made the visit too lengthy and costly, but happily was able to attend the final two events.292 Because sallekhanā is not a medicalized way of dying, I thought I would have to strongly justify applying medical decision-making methodologies to the practice, but as with the

Varanasi symposium, I was only one of many to do so. Nor was I alone in suggesting safeguards

288 T-083115-J-059 289 Sharma 2015; BBC 2015. See two relevant articles in inset text boxes # 2 and #3. 290 Law Commission of India, Ministry of Law (Government of India), June 1971. Sections 306 and 309 on suicide and abetting suicide. 291 Ambedkar et al. January 26, 1950. On “right to life.” 292 Much thanks to the ISJS for partial funding to travel and participate in these important events.

117

Box #3 to protect the vulnerable in an attempt to satisfy India Top Court Lifts Ban on Jains' Santhara Death Fast detractors. I was also asked to give a Buddhist BBC News, 31 August 2015 perspective on final practices at the EOL. India's Supreme Court has suspended an order of the Rajasthan high court banning I did nevertheless tell the symposia santhara - the controversial Jain ritual of fasting unto death. participants that I hold medical decision-making as

Earlier this month, the high court had ruled that the voluntary religious practice of santhara was something which can provide insight into this a form of suicide and, therefore, illegal. religious practice because of the medical Jains had protested against the order, saying suicide was sin, whereas santhara was religion. profession’s deep and long-standing engagement

On Monday, the top court said it would take up with ‘life or death’ moral dilemmas, techniques for the issue for consideration. assessing decision-making capacity during the Legal experts say they expect the case to take several years to come to a conclusion. informed consent process, as well as having regular

Jainism is one of the world's most ancient religions, and Jain monks lead a life of extreme interactions with the law with regard to professional austerity and renunciation. conduct. Santhara - also known as sallekhana - is a controversial practice in which a Jain gives up For the rest of this section, my primary aim food and water with the intention of preparing for death. is an investigation into whether accusations brought

Some human rights activists say the ritual is “a against sallekhanā as a means for suicide on the social evil” and should be considered as suicide. part of the practitioner, and giving context for In its order, the Rajasthan high court agreed that it amounted to suicide and made it a abetting to suicide and coercion by other players, criminal offence. are justifiable or not when analyzed through the lens

of bioethics. First I will offer suggested safeguards

and oversight to protect voluntariness in the vulnerable and frail elderly, the main cohort

detractors are concerned with, and these will be related in nature to those used in MAiD. Next I

will be testing sallekhanā against several logical moves commonly relied upon in medical EOL

118 decision-making and clinical ethics consultation when patients contemplate Voluntary Stopping of Eating and Drinking (VSED): (1) foregoing life-sustaining technologies (through withholding or withdrawing treatment); (2) the shift of health care focus from curing to comfort (through pain and symptom control) in hospice palliative care; and (3) the rule of double-effect (RDE) which, in essence, allows for an action which has foreseeable but unintended negative consequences, such as fasting. I will argue that although Jain VSED under its own conditions of intractable pain or terminal illness passes the muster for both (1) and (2), since nutrition and hydration (as well as ambulation) can be considered overly burdensome for the dying person, when considering (3) there is the possibility of a gap between the ideal and lived practice. The normative Jain criterion of not intending death despite it being a foreseeable consequence of sallekhanā might pass the

RDE test but because subjective intentions cannot be measured and can be multi-faceted, it is not impossible for a practitioner taking up unlimited fasting vows to intend to die. Additionally, because those with illness and at the end-of-life are vulnerable and in greater danger of undue pressure from others, the potential for coercion definitely exists. Because of these risks, which fuel the accusations of sallekhanā detractors, solutions may be found in the safeguards utilized in

MAiD. Bringing MAiD into this discussion of VSED is not meant at all to promote it or confirm its acceptability, as I have major concerns with both the practice of lethal overdose itself and the manner in which it is logically justified, but is in line with other researchers who have seen merit in having the (very different) EOL approaches of VSED and MAiD speak to each other293 and I think MAiD safeguards can map nicely onto sallekhanā. If these safeguards are able to make the active termination of life by legally permissible within certain jurisdictions, a version of them would likely legally assist the less problematic case of Jain VSED and help it pass the RDE test.

293 Lachman 2015

119

c) Reframing sallekhanā as a form of Voluntary Stoppage of Eating and Drinking (VSED) to Protect the Vulnerable and Satisfy Critics

1. Safeguards and Oversight

I am choosing to front-load this next part with a discussion of safeguards and oversight, those which already exist in traditional sallekhanā processes and those not yet in use which could potentially be helpful, to demonstrate the importance of the topic in relation to protecting candidates who are predominantly frail and vulnerable elderly. For the purposes of a ritualized

EOL practice, why look to biomedicine for guidance on safeguards and oversight? There is much biomedical expertise in informed consent processes which include techniques for assessing decision-making capacity. As well, there is an opening left by the Jain tradition for physician engagement due to the fact that both terminal illness diagnoses and lifespan prognostication are crucial in determining candidacy for the practice. Although lifespan prognostication is fraught due to being what we might say is a combination of science, educated guesswork and instinct, as with diagnosing illness, to be done properly it requires medical expertise. The 1991 sallekhanā symposium suggested physician involvement in sallekhanā for monitoring the condition of the adherent and for documentation. Additionally, one of my informants Dr. Shugan Jain, mentioned earlier and who also organized the 2016 sallekhanā symposia, said that we could see physicians as a type of niryapaka294 which is a traditional term referring to monastic attendants who support the person undergoing sallekhanā. So, there are reasons from both insider and outsider

294 Although in Jainism generally meaning a voluntary death attendant, or sometimes preceptor (niryakapācharya), I have been unable to find a literal translation of this term. In another context, the Hindu ancestral funerary offering ritual of śrāddha a preta niryakapa is translated as “a carrier of dead bodies (Dharmawiki).” Since preta is translated as “a dead person (Williams 2008: 711),” we might translate niryakapa on its own as “carrier.” This seems to go well with the use in Jainism as the voluntary death attendants act in a supportive way for the one undergoing the practice.

120 perspectives in support of biomedical involvement in safeguards and oversight to protect candidate voluntariness.

At the first of the 2016 symposia in Delhi, a young and very eloquent advocate from

NLU suggested certain guidelines for sallekhanā involving psychiatric and legal oversight. It is fascinating that the guidelines he suggested closely approximate some MAiD processes. Between the Carter judgment on February 6, 2015 by the Supreme Court of Canada,295 which first decriminalized MAiD in the country, and the royal assent of federal legislation for MAiD (Bill

C-14) on June 17, 2016,296 all requests needed to go through the courts. A psychiatric consult, however, is not required by legislation but at the institutional-level, policy may require it especially if there are any indications of depression in the patient’s medical history. At the symposium, I think it was very significant that there was palpable resistance to such oversight from attendees and other speakers, to the point where some were shouting. I also think that it is significant that he is not the only one that thinks that sallekhanā safeguards and oversight, some of which are related or even inspired by MAiD processes, might be useful. Although his proposed guidelines were very rigorous, I have some similar ideas but with less legal intervention. Although aware of the time-honoured and rigorous processes between candidates and senior religious leaders in determining the appropriateness of entering the practice, my suggestions for further protecting candidates mirror the UK elements of real consent as the guide for Indian medical standards, as we established in chapter two, based on (1) voluntariness, (2) capacity, and the (3) patient having a “minimum sufficiently adequate level of information about” the treatment being proposed.297 These three elements of consent intersect and overlap, but I will look at each individually and suggest how testing for and enforcement of these areas,

295 Supreme Court of Canada, 2017 296 Government of Canada, 2017 297 Kannan 2014: 174

121 as well as oversight mechanisms, might be operationalized for the dual purpose of protecting candidates and satisfying critics.

Voluntariness: Checking for voluntariness in medical decisions should be done by clinicians every time they propose interventions. The rigour with which such testing should be done is commensurate with the level of stakes of the decision, which is why voluntariness is explicitly listed among the eligibility criteria for MAiD in Canada and other jurisdictions. In practice, the essential players in addressing a formal request for MAiD need to check for voluntariness, such as the two assessing physicians. With the patients I have been called in to consult on, I myself have checked for voluntariness and it is typically done by asking the patient directly if there has been any pressure at all from others such as family or healthcare professionals. Of course, someone could well be under duress and answer not with the truth because of this. This is why I also ask the patient to track for me when and how they heard about

MAiD, and how it is that they came to the decision for themselves. This can provide good collateral information that might tease out any dissonances with what the person is saying and the reality of the situation. Coercion is the main concern of the detractors who began the recent legal activity with the human rights PIL. As such, I suggest voluntariness be tested for in a formal manner. As I will mention for capacity, this can be done by a medical professional or could well be done instead by a trained member of the Jain community in case this is more acceptable to members or leaders in the faith. The results should be such that it can be reportable to a review body if such were to exist, a if investigated or to a court if litigated. Contrary to the opinions of the 1991 Varanasi symposium, I would strongly recommend against waiving consent for sallekhanā, referred to as “nonvoluntary sallekhanā” by Bilimoria,298 under any circumstances. I also strongly recommend against substituted consent for people

298 Bilimoria 1992

122 who are incapable from whatever cause, be it cognitive interferences, unconsciousness or otherwise. Save some anecdotal examples from Belgium involving proxy consent for people with advanced dementia given by Dr. Trudo Lemmens, Professor and Scholl Chair in Health

Law and Policy at the University of Toronto Faculty of Law,299 I don’t know of any jurisdiction that offers MAiD which allows for involuntary euthanasia or proxy consent in general, including

Canada, although proxy consent is being considered by the Canadian federal government.

The pressure to not eat at the end of life can also arise from the influence of normative religious doctrine, as demonstrated by this excerpt from a difficult to date Vaishnava smṛti 300

Hindu text from the first millenium CE,301 the Garuḍa Purāṇa:302 “O Garuda, at the time of death (pranyatra ka samay)303 the dying person must keep a hunger strike (anashan)304 and eat nothing. If his mind has become detached, he can take sannyas305 in the time of death.”306 The main source of pressure that concerns sallekhanā detractors, however, is that between adherents.

As an exemplary religious mode at the end of life, according to the BBC, “[t]hose who undertake

299 Lemmens 2018. Some of the Belgium examples of proxy consent were also problematic in various ways, such as one in which the person receiving an assisted death cried out during administration of the lethal dose, and another in which the person was restrained during administration by order of the physician. This physician turned out to be the only provider in that jurisdiction to ever be criminally charged with regard to assisted death. 300 Sanskrit for “remembrance (Williams 2008: 1272).” Hindu texts are generally categorized as either shruti (“that which is heard”) which are revelation texts not attributed to an author such as the earliest Hindu texts (the Vedas), or smṛti (“that which is remembered”) which are attributed to human authors. 301 Gietz et al. 1992 302 Garuḍa is Sanskrit for ““devourer”, because garuḍa- was perhaps originally identified with the all-consuming fire of the sun's rays), Name of a mythical bird (chief of the feathered race, enemy of the serpent-race…,vehicle of viṣṇu- (Williams 2008: 348).” Purāṇa is Sanskrit for “old” but also is the “[n]ame of a class of sacred works (Williams 2008: 635).” 303 Given by Justice as Sanskrit for “time of death (Justice 1997: 197).” “Prāṇa” was defined earlier but, again, is Sanskrit for “the breath of life, breath, respiration, spirit, vitality (Williams 2008: 705).” Yatra is Sanskrit for “on which occasion (Williams 2008: 841)” and samaya can be translated as “time (Williams 2008: 1164).” This might be a stylized textual phrase as it seems literally to mean “the time of the occasion of vitality.” However, Justice does not place any diacritics for prāṇ, so yatra might instead be yātrā in the original text, meaning “going, setting off, journey (Williams 2008: 849). This would fit better as the phrase prāṇyātrā ka samaya would then translate as “the time of the departure of vitality.” 304 Sanskrit for “fasting (Williams 2008: 27).” 305 Sannyāsa is Sanskrit for “acceptance of the renounced order of life (Bhaktivedanta Vedabase, CC Madhya 25.245: Śrī Caitanya-caritāmṛta, Madhya-līlā, Madhya 25: How All the Residents of Vārāṇasī Became Vaiṣṇavas).” 306 Justice 1997: 197. Ch. 9:34.

123 santhara are revered by fellow Jains and their deaths are celebrated publicly” to the extent where

“[l]ocal newspapers praise them and families often take out full page advertisements of the practice.”307 The same report refers to ninety-three year old Keila Devi Hirawat who entered sallekhanā in September 2006 and whose daughter-in-law Nirmala Hiravat is quoted as saying:

“She has brought name and fame to our family.”308 For this family, social reputation is clearly a major concern and potential householder candidates for the practice might well consider this when weighing various factors in their decision-making metrics. Indeed, name and fame can lead to the sallekhanā flaw of “Jīvitāśaṁsāprayoga309 (the desire to live on)” as given in the

Upāsakadaśāṅga, 310 said to be composed by the last direct disciple of Mahavira,

Sudharmaswami,311 dated somewhere in the sixth century BCE and the seventh in a collection of aṅga312 or “limbs” which contains hagiographic accounts of exemplary lay Jains.313 This is because sallekhanā

attracts a lot of adulation from the faithful followers of the faith and the practitioner’s name and fame spread far and wide. Also, he is rendered high degree of attention and service by them and all this may tempt the aspirant practitioner to wish to live on for some more time so that all this happiness may continue.314

It is in the context of normative and familial pressures that we can consider the concepts of hard and soft voluntariness. The concepts seem to trace back to philosopher and psychologist William

James’s late nineteenth century paper “The Dilemma of Determinism” in which he distinguishes

307 BBC 2009 308 BBC 2009 309 Śreyas offers “the desire to live on (Śreyas 2007: 64)” as the translation. When looking closely at the term, jīva means “living (Williams 2008: 422),” āśaṁsā translates as “desire (Pradīpaka 2018),” and prayoga can translate as “plan (Williams 2008: 688).” So, the full word could be “planned desire for living.” 310 I have been unable to find a translation for the title of this work. Upāsaka translates from Sanskrit as “follower” and in Buddhist contexts refers to a “Buddhist lay worshipper (Williams 2008: 215).” Daś is “ten” and aṅga as “limb (Williams 2008: 7)” or referring to the core Jain texts. So, this might be given as “Ten Texts for Lay Adherents.” 311 Dundas 1992: 319 312 Sanskrit for “limb (Williams 2008: 7).” 313 Jaini 1998: 54-55 314 Śreyas 2007: 64

124 between hard and soft forms of determinism in discussing volition, the former resembling fate315 and the latter its opposite, or freedom. 316 These prior concepts parallel hard and soft voluntariness in that the “hard” aspect is driven by forces external to the agent, whereas the

“soft” aspect is driven by forces internal to the agent. Hard voluntariness involves an absence of external pressure, such that might come in the form of someone encouraging another to engage in sallekhanā. Even if a family member does not explicitly suggest such a course of action, the person merely knowing that the family of someone who engages in sallekhanā will have increased reputation in the community can be internalized and unduly influence their decision.

The mere normative push towards this idealized mode of dying in Jainism can also be internalized and unconsciously influence adherents. These are examples of interferences to soft voluntariness, where processes internal to the person hinder their ability to make a free choice.

Another example would be mental processes that hinder capacity, such as delirium or dementia.

To be sure, even if the sallekhanā candidate does not seek reputation for themselves by way of the practice, to seek it for one’s close ones would still be out of accord with the required soteriological intention that is far from such worldy concerns.

Madhav Mitra, legal counsel for the PIL petition, had this to say:

Old people usually resort to santhara, it's during this stage when they need more love, care and attention. If a person undertakes santhara even on his own, the members of the family are duty bound to stop them. They just can't let a suffering person die without painkillers or medical assistance; even the food and water is stopped. We consider this inhuman.317

While I agree that emotional supports and pain (and symptom) control must be made available to those that need it, I think Mitra goes too far in saying that families are obliged to stop loved-ones from engaging in sallekhanā. Justice Pana Chand Jain says that those who enter sallekhanā

315 James 1884: 2 316 James 1884: 3 317 BBC 2009

125

“have ample time to reconsider their position and are free to eat at any time.”318 When this is the case, that people have the opportunity to freely choose whether to eat or not, it is dependent on having both hard and soft voluntariness or an absence of external and internal pressures. The internal pressures of social attitudes might be hard to locate as they could be unconscious, but this, and as I will argue below with regard to mental capacity, can be assessed by an expert whose responsibility it is to objectively and without bias test for soft voluntariness. I think that the potential for pressures to not eat and drink before death, even coercion towards this, is a genuine concern whether real or perceived, intended or unintended and must be put in check.

Capacity: Another recommendation of the young NLU advocate was for frequent visits to the person undergoing sallekhanā as a way to constantly check consent. I am impressed by this, and wholeheartedly agree. In addition, my main and strongest recommendation to the

Jain community which I shared at the symposia is for mental capacity (or mental “competency” in legal jargon) to be assessed. My definition of “capacity” aligns with Ontario’s Health Care

Consent Act:

A person is capable…if the person is able to understand the information that is relevant to making a decision about the treatment, admission or personal assistance service, as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.319

Capacity is both time and task specific, meaning that capacity is potentially changeable and in our case we will be applying it specifically to sallekhanā as it parallels with a refusal in a medical context of any form of nutrition and hydration (including artificial) as with VSED. Of the four aspects of capacity, only the first two are explicitly stated in the legislation. The first is the ability to understand, which relates to the person’s current circumstances, health status, and

318 BBC 2009 319 HCCA 1996, s. 4 [1]

126 details about the treatment being proposed. The next is the ability to appreciate, which relates to outcomes of a decision or a lack of decision but as the proposed treatment applies to the person’s unique case including the proposed treatment’s risks and benefits to them. The last two of the four aspects of capacity are implicit in the HCCA definition which are the ability to reason, and to express a decision. For sallekhanā, the understanding component would require knowing that one has a terminal illness and is nearing the end of life, and the appreciation component would not only require knowing that either taking the final fast or not both will ultimately end with death (but more imminently with fasting), but also that certain symptoms may come with dehydration and malnutrition.

Such capacity assessments as I am proposing do not have to be done by a physician per se. There are other health care disciplines that assess for capacity for treatment decisions in many jurisdictions, such as nurses, and in Canada Nurse Practitioners are able to assess for eligibility and perform the procedure for MAiD which is why the terminology was changed from Physician

Assisted Dying (PAD) to Medical Assistance in Dying. The HCCA also lists a number of roles that can assess for capacity for certain types of decisions, such as Social Workers for disposition decisions. Ontario also has trained capacity assessors who may not belong to any health discipline proper. To make it easier, trained capacity assessors for sallekhanā could potentially be from within the tradition itself.

Sallekhanā capacity assessments should not just be for laypeople, in my view.

Although Jain munis are afforded great reverence based on mere initiation into the order, and it might be uncomfortable to admit, there is no guarantee that disease processes will not affect their decision-making capacity by way of cognitive interferences, such as that which comes with

127 delirium or dementia320. And without capacity, informed consent and true voluntariness are impossible to achieve. Possibly an artifact by the writer, a Presidential Endowed Chair in Health and Professor of Religion Studies at Lehigh University states that for sallekhanā the “permissible circumstances are those of terminal illness or old age accompanied by such problems as senility and physical deterioration.”321 Rather than being an eligibility criterion, dementia should actually be a disqualifier, not on its own but only if it prevents capable decision-making. Since consent is time specific, I would suggest that sallekhanā processes must make for assessing capacity at regular intervals (not just at the outset) and allow for the capable person to be able to change their mind at any time and as many times as they need to. This is in harmony with

MAiD and medical decision-making in general.

Since I took up closely investigating sallekhanā years ago, I have ever remained concerned with the fact that the vows are usually referred to in both the religious and academic literature as non-rescindable, as Jain monastic vows last until death. This might lead one to believe that a person cannot ever change their mind, or have the status of their vows change if their capacity is lost. Fortunately, however, there are sources that allow for someone to stop the fast under certain conditions. The Ācārāṅga Sūtra322 is dated between the fifth and first centuries

BCE323 and as the first of the aṅgas, is concerned with monastic conduct and “accorded great reverence…also because it contains what is certainly our most authoritative account of the life of

320 Delirium and dementia symptoms can be similar (Mayo Clinic, 2015) as both cause cognitive interferences. Whereas dementia “is caused by damage to brain cells (Alzheimer's Association, 2017),” delirium however “can often be traced to one or more contributing factors, such as a severe or chronic medical illness, changes in your metabolic balance (such as low sodium), medication, infection, surgery, or alcohol or drug withdrawal (Mayo Clinic, 2015).” 321 Davis 1990, emphasis added 322 The Sanskrit can be loosely given as “Manual Text on Rules” since ācāra can translate as “rules (Williams 2008: 131),” and aṅga is literally “limb” but, as mentioned earlier, serves as the name of the main Jain religious texts. Sūtra generally refers to a text in Jainism and Buddhism (for the latter meaning original rather than commentarial), but is related to “thread” and can be “any work or manual consisting of strings of…rules hanging together like threads (Williams 2008: 1241).” 323 Jain 1998

128

Mahavira,” the founder of Jainism in this age.324 The text advises the one undergoing sallekhanā:

“If he becomes sick he should accept food; otherwise he should do anashan [fasting] by completely abandoning food,”325 which is translated slightly differently by Jacobi as “[i]f a mendicant falls sick, let him again take food.”326 This might sound strange, as they would likely already be sick since a terminal illness would qualify them for sallekhanā, but I read this as meaning a new onset of illness that comes from the fast. An Ācārāṅga Sūtra commentary lends more support to not only the option to end the fast under certain conditions, but appears to make it a requirement:

The commentator (Vritti) has given two special interpretations of the phrase aha bhikkhu gilaejja...327 i. If an ascetic observing samlekhana328 practices gets sick, unconscious, or dizzy due to lack of food and nutrition, he should stop rigorous austerities, terminate the samlekhana process and accept food. ii. If he develops an aversion for food or has lack of appetite, he should give up food.329

Noteworthy is that the conditions leading to ending the final fast are broader in the commentary, such that even vertigo symptoms and unconsciousness qualify as triggers to end the fast. These are potentially problematic because many people experience vertigo as a part of the dying process, something I will discuss with respect to Indo-Tibetan Buddhist conceptions of gradual elemental dissolutions at the end of life. As well, people typically fall into unconsciousness even absent pain medication as they approach death. I have seen this too many times to count in my care for the dying over a period of two decades. This could certainly complicate the integrity of

324 Jaini 1998 325 Saras 1999 326 Jacobi 1884: 75 327 There may have been a non-standard or incorrect transcription of this phrase as it has been difficult to translate literally. “Aha” can be translated as “surely (Williams 2008: 124)” and bhikkhu is identical with the Pali version of bhikṣu in Sanskrit, literally meaning “beggar” or “mendicant (Williams 2008: 756).” Gilaejja and gilaeja have proven most troublesome to locate but “gilat” means “swallowing (Williams 2008: 355)” and “ejat” means “anything moving or living (Williams 2008: 230).” So, this phrase could mean something along the lines of “surely the monastic [remains] a living being [through] swallowing,” perhaps encouraging staying alive through eating until one gets better enough to resume the fast, which suits the context well. 328 Sallekhanā is at times transliterated this way. 329 Saras 1999

129 the fast. I do not have a solution to this quandary but it deserves more attention because it is a further example of a flexible and case-by-case approach to the practice according to sages in the

Jain tradition. Since there already exists flexibility with regard to the sallekhanā vows in normative Jain doctrine, it might not be unreasonable to push it slightly farther and allow the person to end their fast if they simply make the autonomous choice to do so especially when it comes to a final practice such as this. In a medical context, to not allow a patient to stop a treatment that they earlier chose to have implemented but later consider overly burdensome would amount to battery. If someone were to ask for water while undergoing sallekhanā, who is anyone to refuse them? If they have capacity, they have the right to end the fast. If they do not have capacity, they no longer have the ability to choose an irreversible practice but their incapable wish is still relevant. Our provincial health care legislation, the HCCA, makes it a requirement to constantly take the wishes of the person into consideration, even if their capacity is limited.330 When someone says they are thirsty, regardless of their mental state, it matters.

Sufficient Information: Despite establishing in chapter two, “Shall We Tell the Patient?”

Blocking Bad News in End-of-life and Health Information Sharing, that physicians in India appear to have much leeway in choosing what information they share or not, due to the onus of consent lying with the patient combined with a weighting of the standard of “acceptable medical practice” over informed consent, the UK standards which guide Indian medical practice make physicians “required to communicate…the alternatives to that treatment.”331 This would be in keeping with the third aspect of consent (the other two being voluntariness and capacity): the patient having a “minimum sufficiently adequate level of information about” the treatment being

330 HCCA 1996: s. 21.2(b) 331 Kannan 2014: 172

130 proposed.332 The offering of the full range of end of life care options is a legal requirement in processes around MAiD, such as the path of hospice palliative care which includes the option of palliative sedation, “meaning that patients whose pain and suffering cannot be controlled with standard palliative care treatments may be sedated to the point of unconsciousness.”333 Some patients who are in haste and who do not want to wait out the full ten clear days of the reflection period, something implemented to ensure the stability of the wish for MAiD, ask to have the reflection period reduced in length. To be eligible for this, there must be a risk of very imminent demise or loss of capacity agreed upon by both assessing clinicians. The logic behind imminent demise as a cause for speeding up the process confounds me, since it means further hastening a death when a natural death is very near, but often patients who are not eligible for reducing the reflection period choose palliative sedation rather than waiting for MAiD. In the context of sallekhanā, it could be made a requirement for aspirants to be presented with all of their

EOL options including the possibility of full support from medical and nursing professionals to assist with their pain and symptoms. Unlike capacity assessments, it might be difficult for non-healthcare professionals to perform this function as the presentation of options is typically done by those who would be delivering such comfort measures. There may still be creative ways, however, to have non-HCPs deliver such information to candidates but perhaps only after some training. This added component could contribute in part to solving problems with soft voluntariness for people who otherwise wouldn’t know what other choices they have other than sallekhanā.

Case Reviews: Oversight could be provided by way of case reviews led by an expert panel. Despite occurring after the fact, post-case reviews as standard practice could incentivize

332 Kannan 2014: 174 333 Willems/van Wijlick 2014: e1166

131 those involved in sallekhanā processes, senior teachers, capacity assessors and possibly physicians to be thorough in ensuring that the appropriate requisites are met. A perhaps stronger safeguard than post-case review, as suggested by the Baker/Sharpe model, would be prior authorization by a review board or a pre-case review334 since potentially inappropriate candidates can be prevented from accessing MAiD at the outset. In Belgium, as with Canada, not only one physician but a second independent physician is required to determine if a person meets the requirements of receiving MAiD.335 Further, also in Belgium, if death is determined to not be within the “foreseeable future,” a third physician is brought in and a one-month obligatory waiting period is implemented.336 In our region we also bring in a third physician assessor but under the condition, rather, of the initial two physicians having disagreement on MAiD eligibility. Even further still, if disagreement persists between the three physician assessors, some institutional policies require the striking of an interdisciplinary committee which can include a Chief of Staff, the Chief of the department responsible for the patient, an Ethicist, a

Risk consultant, and so on, to weigh-in on the process of eligibility determination. There are two reasons I can see which might make it difficult to justify mandatory pre-case reviews for sallekhanā: (1) three physician assessors and a committee are used only under circumstances of disagreement in MAiD eligibility, not as a matter of course; and (2) sallekhanā is a form of

VSED, and VSED is treated in general with less rigor than MAiD because VSED is an act of refusal or omission rather than active termination of life. That said, because of the strong legal push-back from sallekhanā detractors, perhaps it would be worth overreaching with oversight to finally satisfy critics, at least for some time.

334 Lemmens 2016 335 Lemmens 2016 336 Lemmens 2016

132

Given the resistance to the suggested legal oversight at the 2016 Indian symposia, one thing I will say is that pre- or post-case reviews don’t have to take a legal form. In Ontario we have a third-party, quasi-judicial, interdisciplinary tribunal built into the HCCA called the

Consent and Capacity Board (CCB). It consists of a physician, a lawyer and a member of the public and has the authority to hear and decide upon difficult health care cases, such as those forcing patient admission into a locked mental health unit for someone who is deemed a threat to themselves or others. Panel reviews also don’t have to be laborious. The CCB is mandated to hear cases within a certain amount of time, to do so where the patient is located and to deliver a decision within days.

Such safeguards and oversight are worth considering for sallekhanā since such means satisfy the stricter requirements of MAiD, more difficult to justify than VSED, and perhaps can be put into operation to test whether they offer enough protections to vulnerable people to legitimate sallekhanā in the eyes of its detractors.

2. Foregoing life-sustaining measures

The previous subsection offered potential safeguards and oversight, influenced by MAiD processes, in order to both protect candidates and satisfy critics of sallekhanā. This subsection, along with the next two on hospice palliative care and the RDE, continues the efforts to satisfy sallekhanā detractors by re-framing and analyzing the practice in various ways. As such, sallekhanā can be seen as a type of foregoing of life-sustaining (LS) measures. Although not typical for sallekhanā to be based on the stoppage of artificial feeding and hydration, it is not impossible and exploring some of the logic applied to the foregoing of such could prove helpful.

Foregoing life-sustaining measures covers both withholding and withdrawing of medical interventions, meaning not starting a possible intervention and stopping an intervention which

133 has already begun. It is conceptually useful since although it is often said that not starting an intervention versus stopping an intervention feel different for decision makers, most in North

American medicine and bioethics see the two as ethically, legally, and medically equivalent in their permissibility when a treatment would be futile or overly burdensome in a non-recoverable illness. Of course, a capable person can refuse or stop any treatment they deem unacceptable for themselves, even under ordinary circumstances. In discussing the excrutiating issue of LS heroics in paediatrics, two pediatric intensivists ask and answer the question “[i]s there a difference between decisions to withhold or withdraw life-saving therapy? Most philosophers and legal scholars say no.”337 That said, for loved-ones a withdrawal of LS interventions can feel like it terminates life because a causal link is conceptually made, and many including myself would say inappropriately, based on a temporal connection between two events.

I use the term “measures” rather than “treatment” consciously when discussing foregoing life-sustaining measures with regard to VSED because I see the provision of nutrition and hydration for those that are able to eat not as medical intervention but as a fundamental form of care. Unlike some thinkers, such as Keown who was mentioned in the introductory chapter for his work in Buddhism and bioethics, I see nutrition and hydration by artificial means for those who are unable to eat, however, most certainly as a medical intervention as they require more invasive procedures such as tube insertions by hand into the nose or mouth or surgically into the gastro-intestinal (GI) system, and by intravenous (IV) routes. Despite variation in the time between stopping intake and death, everyone stops eating and drinking at some point before they die: “A person in an advanced state of disability could be seen as having already begun the process of dying. Before the advent of tube feedings in the 1950s, losing the ability to eat was a

337 Novotny/Perkin et al. 2014: 595

134 common consequence of terminal illness and it was a common manner in which people died.”338

To see artificial intake as a medical intervention is in accord with the Committee on End-of-Life

Decisions in Severely Ill Newborns of the Royal Dutch Medical Association which states that

“[t]he administration of artificial nutrition and hydration must be regarded as a medical form of life support. As a consequence, a judgment that further treatment has become futile also applies to nutrition and hydration and implies their discontinuation.”339 Throughout my 2016 visit to

India, I often heard consequentialist talk of “passive euthanasia,” or the removal of life- sustaining measures, which is a term that has fallen out of vogue in my provincial context at least. In my view the term fits only the context of reversible illness but which I reject outright with regard to acts of omission such as withholding and withdrawing treatment or VSED with non-recoverable illness since in its absence it does not cause death but allows the underlying disease process to run its course.

On the ground, even though in many jurisdictions there may be equivalent acceptability of both withholding treatment, such as not providing CPR to a patient with brain-death, and withdrawing treatment, such as stopping blood pressure medication for someone approaching death, withdrawing often feels like a form of killing to families and teams even though many agree it is not. However, withdrawal of life-support has been quite complicated in India. A physician presenter at the 2016 TMU symposia on sallekhanā confirmed that withdrawal of life sustaining treatment in India necessarily requires going through the courts, and stated that

“perhaps after twenty or thirty years in a permanently vegetative state we can then start to think

338 McCormick 2013: 217 339 Willems/van Wijlick 2014: e1165

135

340 Box #4 about removing ventilation.” As it turns out, In historic verdict, SC okays passive euthanasia Asks HC To Give Go-Ahead five years prior in 2011 the Supreme Court of After Getting Consent & Expert Opinion Dhananjay Mahapatra India legalized passive euthanasia.341 The Times Of India, Ahmedabad. Mar 8, 2011 So, until there is new legislation enacted,

New Delhi: Mercy killing now has legal when a request is made it must go through the sanction in India. The Supreme Court on Monday [Mar. 7, 2011] broke new ground with a judgment allowing passive euthanasia - relevant High Court, consent must be sought from involving withdrawal of life-sustaining drugs and/or life-support systems - for patients who either relatives or, if that is not possible a “next are brain dead or in a permanent vegetative state (PVS), and of whom doctors have lost friend,” and deliberated by a tribunal whose hope of reviving even with the most advanced medical aid. membership includes three physicians, two of

The court, however, clarified that active which being specialists in neurology and euthanasia, involving injecting a potent drug to advance the death of such patients, remained a psychiatry. Since this would only ever be crime under law.

While laying down guidelines for passive considered for people in a permanently vegetative euthanasia, a two-judge SC Bench of Justices Markandey Katju and Gyan Sudha Misra state (PVS), neurology involvement is sensible for rejected the euthanasia plea for 63-year-old Aruna Shanbaug who has been lying in PVS in brain-death confirmation but I am not sure why a Mumbai’s municipal-run KEM Hospital for the last 37 years after a brutal sexual assault in psychiatrist would be needed since there likely 1973 when she was 25. The government, represented by Attorney General Goolam would be no communication with the patient. Vahanvati, had opposed all forms of euthanasia, saying India was not emotionally ready for it. There is also no mention of the physicians being

The SC specified that only a high court Bench independent from one another, to prevent of at least two judges can give the final go- ahead for passive euthanasia after bona fide potential bias and something we find with MAiD consent from the patient’s relatives and the opinion of an expert panel of reputed doctors physician assessments in Canada, but that there comprising a neurologist, a psychiatrist and a physician. The HC would issue notice to are to be three different types of doctors shows the concerned parties and give an expeditious judgment since delay could aggravate the rigor of the assessments that the Supreme Court mental agony of the relatives.

340 TMU 2016 341 Mahapatra 2011. See article in inset box #4.

136

Box #4a requires. As mentioned in the Mahapatra article, (Mahapatra 2011 article continued) at the time of this ruling there was a simultaneous The court devised this rather elaborate procedure - while pointing out that it would rejection of one such case of the type the have to hold good until Parliament enacts a law on this issue - since it was wary of physician at the NLU symposium unscrupulous relatives, in collusion with hospital staff, engineering consent to grab the suggested, a petition to withdraw life- property of a terminally-ill patients, an apprehension expressed by Vahanvati. sustaining interventions from someone in a PVS Agreeing with the 1993 decision of the UK’s House of Lords (in a case involving a 17-year- for several decades: old boy, Anthony Bland), Justice Katju, who authored the 110-page judgment for the Bench, Aruna Shanbaug, bed-ridden in a permanent said: “While giving great weight to the wishes vegetative state for last 38 years after a brutal of the parents, spouses, or other close relatives, sexual assault in November 1973, will live as the or next friend of the patient and also giving due Supreme Court…rejected an euthanasia plea on weight to the opinion of the attending doctors, her behalf because the staff and nurses, taking we cannot leave it entirely to their discretion excellent care, want her to live… SC Bench whether to discontinue the life support or not. rejects appeal for mercy killing of Aruna because

We make it clear that it is experts like medical of the KEM [Mumbai's King Edward Memorial Hospital]342 staff’s “love and affection” for her… practitioners who can decide whether there is 343 any reasonable possibility of a new medical discovery which would enable such a patient to revive in the near future, the court said. We The reason for the rejection of the petition for agree that the approval of the high court should be taken in this connection. This is in the stopping active and life-supporting medical interest of the protection of the patient, protection of the doctors, relatives and next management being based on the affection of the friend, and for reassurance of the patient’s family as well as the public.” Justice Katju, a patient’s healthcare team was unclear to me at voracious reader, quoted a famous couplet of 18th-century poet Mirza Ghalib: “Marte hain aarzoo mein marne ki, Maut aati hai par nahin first glance. Further exploration made it clear that aati (One dies longing for death but death, despite being around, is elusive).” the team was being considered as the “next

friend” in the absence of any other family, rather than the activist who made the petition who was a stranger to the patient, and the healthcare team refused to consent to passive euthanasia.

342 Aruna was a nurse at this institution when she was assaulted. 343 Mahapatra 2011

137

Box #4b Six years later in 2017, the same journalist who (Mahapatra 2011 article continued) reported on the legalization of passive euthanasia wrote “Euthanasia is one of the most perplexing issues which the courts and that “[o]fficial sources said the draft bill on passive legislatures all over the world are facing today. This court, in this case, is euthanasia was in a nascent stage.”344 And between drafts facing the same issue, and we feel like a ship in an uncharted sea, seeking of this very chapter, in March of 2018, the usage of some guidance by the light thrown by the legislations and judicial pronouncements of foreign countries, advance medical directives, or a “living will,” was as well as the submissions of learned 345 counsels before us,” he said. legalized in India but seven years after the legalization

of passive euthanasia, there is still no legislation in place:

The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill (2016)…is yet to be tabled before the Parliament. Additional solicitor general PS Narasimha, who represented the government in the case, said that the bill was at initial stage. “It’s a tentative bill. The process of legislation will take into account the suggestions given by the court.”346

In India there has been great historical resistance towards passive euthanasia as “a sensitive issue

that has been taboo for far too long,”347 and a lengthy (we might say sluggish) process leading up

to its legalization. However, even some vitalist traditions and faith-based hospitals which place a

strong emphasis on the sanctity of life, such as Catholicism, do not consider foregoing

interventions as impermissible or a form of killing in their approach to health ethics.348 So, I am

not suggesting that food should be withheld from people who are able to eat, which is debated

quite a bit in the literature with regard to patients with end-stage dementia who have a poor

quality of life, but that foregoing nutrition and hydration is not choosing death but under

conditions of irreversible illness choosing to leave them off is to remove a particular excessive

burden.

344 Mahapatra 2011 345 Advance care planning and directives are discussed in more detail in Appendix C. 346 Sinha 2018 347 Mahapatra 2011 348 CHAC 2012

138

Intensive Care Units often have patients who are mechanically ventilated, artificially fed and hydrated, and often receiving life-sustaining medication such as inotropes which maintain the blood-pressure such that profusion to the heart and brain remain compatible with life. In these settings clinicians and clinical ethicists commonly have discussions with families of loved- ones who are patients that have a poor prognosis, such as having diminishing neurological status, organ failure and an inability to breathe on their own. In such cases, which usually has the patient in a comatose state requiring substitute decision-makers, if there is ongoing deterioration or little hope of significant improvement then the medical interventions are reconsidered by all stakeholders to weigh the benefits versus the harms. Likewise, if possible, before certain life- sustaining treatments are initiated such discussions can be held. What are the likely possible outcomes of initiating or continuing LS treatments? If the outcome is less than what the patient would want according to their prior expressed capable wishes, or in the absence of such wishes a best guess substituted judgment based on their known values and beliefs, or at least taking into account their best interests, then withholding or withdrawing LS interventions is justifiable.

In the context of sallekhanā as a type of VSED, a similar decision-making approach can be utilized. The “voluntariness” component is a crucial demarcation from the type of proxy decision-making in the situations described above, although there are cases where withholding or withdrawing of LS treatments are considered by patients on their own behalf such as with ventilator dependent high spinal-cord injury (SCI). Dealing with such requests are, unsurprisingly, extremely difficult for clinicians, and determining capacity quite problematic.349

The decision-making capacity of such patients immediately post-injury can be impeded by many factors: the experience and emotions of new acute losses, the intense environment and

349 Field 2008

139 sedation/analgesia while in critical care, and even possibly the disease state itself.350 There also has been much evidence produced that shows for both patients and HCPs, the assumed quality of life post-SCI is greatly underestimated and that losses, such as in marriage and the workplace, are greatly overestimated.351 As such, the passage of time after the immediate post-SCI state, as well as access to both information and SCI-peers to clarify the reality of life after SCI, have been shown to mitigate hasty decisions about withdrawal of LS interventions by allowing for adjustment to the new state of health and reality-checking presumptions about post-SCI life.352

The waiting-period is sometimes called a time-limited trial, as described by rehabilitation specialist Dr. Mukherjee:

The family and the health care team would agree on a time frame for assessing clinical progress. After an agreed-upon interval, they would revisit the issue of withdrawing life support. A time-limited trial would require the health care team continue to accompany and engage with this family and to consider the withdrawal request again if the request persisted. In the meantime, the team would have more medical information, and clearer prognostic indicators, and the family would have had time to process, at least to some extent, the dramatic and life-altering [event].353

Such cooling-off periods mirror those for MAiD, such as the reflection period of ten clear days required in Ontario to ensure the stability of the wish. Since we are here analyzing a competent person who is undertaking sallekhanā, the person themselves can autonomously consider VSED if eating and drinking have become too burdensome given their condition of terminal illness and/or intractable pain.

I have not come across any internal requirements in the Jain tradition, through either texts or discussion, for the candidate to prove the stability of their wish by making their request to their religious leader multiple times over a period of time. My not finding it does not mean such

350 Taub et al. 2014 351 Patterson et al. 1993 352 Taub et al. 2014, Patterson et al. 1993 353 Novotny/Perkin et al. 2014: 596

140 a requirement doesn’t exist. However, if we take the waiting periods seen in post-SCI withdrawal and MAiD contexts which both involve final decisions, if it doesn’t exist already then perhaps something similar can be considered for sallekhanā to demonstrate the stability of the wish to engage in the practice. I have chosen to not place the reflection period in the section on safeguards as a formal recommendation since I am confident that there are already tried and true sallekhanā processes in which the stability of the candidate’s wish can be tested by preceptors.

3. Hospice Palliative Care

Shift in healthcare focus from curing to comfort: Another useful frame of reference for sallekhanā is hospice palliative care, by which the health care trajectory is shifted from the goal of curing disease to one of comfort at the end of life. Some history and thorough definitions of hospice and palliative care will be given in the chapter devoted to pain management and hospice palliative care, but here I have collapsed them in accordance with the usage of the terms together by both the Canadian Hospice Palliative Care Association and Hospice Palliative Care Ontario.

Particularly for the sake of my informants who were not familiar with such services, I gave a brief explanation before the relevant section of the questionnaire during interviews:

This section contains questions and statements about hospice and palliative care. Hospice and palliative care are programs that provide care to people with illnesses that cannot be cured when they are at the end of their lives. The goal of hospice and palliative care is to keep terminally ill patients as comfortable as possible.

As well, for some I additionally mentioned that although both hospice and palliative care programs can equally have dedicated sites and/or outreach community programs and/or roaming teams that can go to wherever patients are located in hospitals, often hospices are found in freestanding buildings whereas palliative care in hospital can often be found on dedicated units.

Our Jaipurian philosopher Mr. Surendra Bothara, who was quoted earlier on the topic of sallekhanā proper, had quite a bit to say about problems with a certain hospice, particularly with

141 regard to pressures on the dying. Surendra made it clear that what he calls the Muktidhām,354 or

“abode of liberation,” a hospice in Vārāṇasī or “Kāśī”355 as the informant referred to the holy pilgrimage spot on the banks of the Ganges river by its more traditional name which he gave as meaning “the luminous,” is not ideal because of both natural pressures on the dying from the context, and family pressure to die in a timely way from loved-ones who are driven by filial obligations. Natural pressures arise by virtue of hospice being a place from which one does not leave, which is not good for the dying as Surendra says that people who enter “know won’t come back.”356 He also told a story of children taking their father to the Muktidhām and, after days of what they saw as lingering, they wanted to perform death rites prior to their father’s death and to be called by staff after the death finally occurred. In Surendra’s view, this was “not duty or respect” but rather from a sense of “worldy obligation.”357

A Hindi film was released in April of 2017 entitled Mukti Bhawan358 (Hotel Salvation) and is described as “a film based on relationships and family.”359 The dialogue in the two minute trailer is very telling of the themes that the production team and/or the distributors want emphasized to the public. A family patriarch says to his family, what appears to be his son, daughter and wife, at the meal table that “I think my time has come. And now, I am prepared to die.” Next, during a birthday cake scene in which the son seems aggrieved, the father says “But I don’t want to die here.” A voiceover of the son has him saying: “Dad, there’s a lot of work in office…” over a scene of what seems to be the gifting of a new cow to the family as they pay their respects to the animal which cuts to a shot of a car driving through landscape on a dusty

354 Sanskrit for “abode of liberation” from connecting dhāma “abode (Williams 2008: 514) and mukti “final liberation or emancipation (Williams 2008: 821)” 355 Sanskrit for “shining (Williams 2008: 280).” 356 J-112614-J-008 357 J-112614-J-008 358 “Bhavana” means “a place of abode” or “house (Williams 2008: 749).” Transliterations of Sanskrit often interchange “v” and “w” as there is no “w” in the Sanskrit alphabet. 359 Mukti Bhawan 2017

142 road as the father says: “What do you have to do?” We then see the son awakened by a bump on the road to realize that his head was propped on his father’s shoulder, and they give each other a surprised look, crammed into the back seat with a third male who is asleep as a voiceover of the father says: “Just find me a taxi and I’ll go myself.” The next shot shows the father reaching for a book from a small shrine and looking back says to his son “Do you have time to find your father a taxi?” The son looks away in sad distress. Over a shot of the son noticing his father hanging his head outside the car window, a voiceover of the daughter-in-law asks: ‘How many days will it take?” to which the son responds with a disapproving “tsk” and “think before you ask!” The shot cuts to a scene of the couple preparing for bed as the son continues, “‘When will he die? When will he die?’ Do you want to get there and strangle him?” and the wife looks back from taking off her makeup in shock. We see the son helping his father walk up a small incline outdoors back to the parked car as we hear the father’s voiceover say: “You will come, right?” and then we see the female that he made the inquiry to, who responds with: “Where? To Vārāṇasī, or…” and makes a click sound and looked up as if to indicate the . When we see a shot of the ghāṭ360 (steps down to water) at the foot of the hospice we hear someone say “This place is called

Hotel Salvation. But we won’t wait forever for you to get Salvation. You’ll only get the room for fifteen days.” There is a quick cut between a shot of the son holding a sleeping bag and the father giving a small push to a child on a swing as he passes, to an office where the father and son sit with a staff member dressed in a white robe with a red vertical tilak361 mark on his forehead. One of them asks: “Just fifteen days? What happens after that?” and as we see the father making oblations while topless in the Ganges, the staff answers in a voiceover: “After that it is your

360 One scholar states that ghāṭ is commonly known in Hindi as “bathing place (Qvarnström 2003: 527)” but more accurately is “a flight of steps to water (Qvarnström 2003: 528).” They also give ghaṭṭa in Sanskrit as meaning “landing place” or “quay (Qvarnström 2003: 527).” 361 Tilaka in Sanskrit for “a mark on the forehead (Williams 2008: 448).”

143 problem. If you attain salvation, great! Otherwise go back home!” As the last line is spoken we see the staff leading the father and son around the hospice.

We next see the father, now wearing all white, and son sharing a meal on the floor of a room as the son speaks on his cell phone: “You are like my family! As soon as I come home we’ll sort it out.” The father interrupts the son to say: “There is no salt in the food.” The son complains, as he covers up the cell with another hand to prevent the other person from hearing, saying: “I’m on the phone!” The father pushes back by saying with accusatory hand gestures:

“You’re on the phone all day, even while we eat!” This cuts to shot of the son removing his glasses and placing his hands on his face, as if exasperated. We next are shown shots of the father on a boat on the Ganges, now in non-white clothes and laughing with an older female who he introduces to his son in an indoor location saying: “Meet Vimla. Come on, pay your respects!” and the son folds his palms to her. She seems to be wearing white in this shot, so perhaps she is also a client. The next shots are of the father being helped out of the boat onto and up the ghāṭ by the same woman while holding hands, and the son looking on disapprovingly through a gate. It might be that the son suspects there is something romantic going on between them, but that and whether the woman is also a client or a visitor are both not entirely clear. The son and his wife are then seated on a bed as she asks: “Why don’t you come362 home?” The son responds: “And leave him here?” She asks: “How many days will you stay here?” as we see a shot of the son looking despondent as his father hangs clothes from a line behind him, and then a shot of the son walking through the piles of wood used for . During a shot of the father having fun and taking selfies while putting his arms around the woman Vimla and a younger woman who is possibly her daughter on a boat on the Ganges, the son and his wife look grim

362 Listening to the Hindi dialogue, and with it seeming as if the couple are both at the hospice, a more accurate translation might be “why don’t you go home?”

144 again as a voiceover (a male voice who is perhaps the father but unclear) says: “If you had the chance to be reborn in our family, would you?” while the shot cuts to several young pūjārī363 waving enormous seven-tiered lamps with multiple flames at the nightly Gaṅgā Ārtī,364 a large prayer and offering ceremony on the banks of the sacred river. The next two shots are of the group watching the ceremony, attended by a huge crowd, from a boat and then a shot of the son with his arms crossed looking away. As the father raises and presses his hands together over his head in devotion while watching the ceremony, and then the son helping his father enter the hospice at night, we hear the father say: “I want you to send me off with a celebration.” The last shot before cutting to the movie release date is panned upwards from the doorway after the father and son enter to show a sign with the name of the hospice, Mukti Bhavan. There is a short final shot after the release date that shows the father lying peacefully with eyes closed and in white clothes, and a hand with a pointed finger slowly enters the shot and moves towards the face of the father and cuts to black. It appears that the person off-screen is thinking the patriarch might be dead and is trying to check for respirations by placing a finger under the nose.

This trailer’s themes are very telling and some are affirmed both by my informant

Surendra above, and from talking to site-staff that I met in the summer of 2010 at the two burning ghāṭ where cremation and remains rites take place on the banks of the Ganges, as well as from another ethnographer Christopher Justice. The son’s reluctance to leave work and accompany his father to the religious hospice, and his ongoing despondency and continued engagement with issues back home rather than what if happening in front of him as the father palliates, demonstrates what Surendra mentioned as support for the dying “not [out of] duty or

363 Sanskrit for “priest (Bhaktivedanta Vedabase, CC Ādi 8.74: Śrī Caitanya-caritāmṛta, Ādi-līlā, Ādi 8: The Author Receives the Orders of Kṛṣṇa and Guru)” but commonly used for ritualists. 364 Ārtī comes from ārātrika which is translated both as “the light (or the vessel containing it) which is waved at night before an idol” and “the name of this ceremony (Williams 2008: 150).”

145 respect” but, rather, from being compelled by social norms or “worldy obligation.”365 The daughter-in-law’s insensitive questions about how long the process will take and encouraging her husband to go home prematurely both speak to this as well. The Maṇikarṇikā366 Ghāṭ is the larger of the two cremation ghāṭ and is the location where the piles of wood were shot for the movie. There are also many boats moored to the shore full of wood as well. Staff told me that the types of wood used for vary in price and sandalwood is the most expensive, in part because it needs to be shipped by boat and also because it is considered the most auspicious.

There are two rectangular cremation areas surrounded by black bars as fencing, and these are dedicated for those of the highest and priestly caste, Brahmins.367 I have always found it fascinating that the lower the caste, the closer to the holy river the cremations take place.

Intuitively, I would have assumed the opposite. The Hariścandra 368 Ghāṭ, on the other hand, is the smaller of the two burning ghāṭ and during a tour by a staff member I was shown the inside of an electric crematory. Distinguishing this crematory on the outside are two tall chimneys, and on the inside it is quite barren save for two incinerators with tracks for pushing the bodies inside.

I was told that such cremations only take thirty minutes, versus the three to four hours that it takes for a cremation with wood, and that the cost is five hundred rupees, or about ten Canadian dollars. Electric cremation is thus very fast, and very cheap. The staff made a point to tell me that business people who are in a hurry often choose this option for their loved-ones. Some families

365 J-112614-J-008 366 Literally meaning in Sanskrit “ear-ornament consisting of pearls or jewels” but also the “[n]ame of a sacred pool in Benares (Williams 2008: 774).” 367 Doniger points out the complications around this term, shown here as brahmana: “The Sanskrit word for the class I am calling Brahmins is actually brahmana, the same word as the name of the texts between the Vedas and Upanishads. To confuse matters further, of the four priests needed to perform certain vedic , one, who just stands around and does nothing but run a full script of the sacrifice in his head, to make sure there are no mistakes, is called a brahmin (in Sanskrit), in contrast with the other priests designated by different names (Doniger 2009: 174).” Another point that is noteworthy is that although normatively brahmins are known to function as priests with both ritual and scriptural authority, something “entirely monopolized by Brahmins (Ghurye 2008: 16),” there is evidence that in practice they at times have engaged in other professions such as revenue collection, trade and agriculture (Ghurye 2008: 16-17), but not limited to these. 368 The Sanskrit literal meaning is “having golden splendor (Williams 2008: 1290).”

146 clearly just want to get it all over with and get back to their lives. In addition to the movie and those on-site on the banks of the Ganges emphasizing the competing pressures on family members between wanting to return to normalcy and the external and internal social pressures of caring for elders at the end of life, I find the sub-text of the son appearing to be chagrinned by his father continuing to live life while in hospice, by forging new relationships and enjoying himself, quite fascinating. But for our context of discussing Jain sallekhanā, let us return to undue pressures that can be placed on the dying.

In the Mukti Bhavan movie trailer, the intake staff makes it clear that pilgrims can stay for only about two weeks and then are forced to leave, which surprises the father and son since the time of death is unpredictable and they likely didn’t plan for a return home after the hospice stay. If we compare this to hospice palliative care admissions in Ontario, although there is variation between institutions a prognosis of three months, sometimes up to six months, is usually required. The length of time from death prognostication making an admission allowable would vary in part based on bed and resource availability. Interestingly, nowadays at many (if not all) of the institutions I have worked at, it is quite common to hear of someone going home from a palliative care unit. One possible explanation for this would be that people’s health status often improves when their pain is properly controlled. So, length of stay is one pressure on the dying from such an institution as the Mukti Bhavan, and from their families who would have to continue to care for them if the death does not occur in a timely way. Another common pressure in India is for the dying to stop eating.

The ethnographer Justice, in his book Dying the Good Death: The Pilgrimage to Die in

India's Holy City, also raises concerns with pressures found in the Varanasi hospice:

Though there is no rule at the Muktibhavan about whether or not people can eat, people are expected not to eat and it is apparent that not eating and drinking is taken as evidence of

147

one’s commitment to dying and thus an indicator of being the right type of person to die at the Muktibhavan.369

A relative of a hospice client who had spent much time talking with the hospice priests, leaving the ethnographer unclear whether his opinion was his own or a result of the influence of the priests, had this to say: “People automatically do not desire food and water as their death approaches, it is not a good thing to eat just before dying.”370 Justice recognizes that the stoppage of eating and drinking might well be endemic to the process of dying:

It is quite possible to see the cessation of eating in advanced old age or in the end stages of lingering illness as a natural physiological process. In this case it would make little sense to see dying at the Muktibhavan, or any other examples of dying at the end of a life cycle by starvation or dehydration, as accelerated.371

But the idea that eating as one is dying is “not good” is justified by some as a way to ensure continence while dying, as waste elimination is taken a sign of a bad death that would lead to an inauspicious rebirth, a view shared also by some Hindus in diaspora in the United States.372 The pressure to not eat at the EOL can also arise from the influence of normative religious doctrine, as shown by the excerpt from the Garuda Purāṇa mentioned earlier: “O Garuda, at the time of death (pranyatra ka samay) the dying person must keep a hunger strike (anashan) and eat nothing.”373

We have been talking about Hindus but some say there can be pressures to fast among

Jains as well, which of course led detractors to file the PIL petition in Rajasthan. As an exemplary religious mode at the end-of-life, according to the BBC, “[t]hose who undertake santhara are revered by fellow Jains and their deaths are celebrated publicly” to the extent where

“[l]ocal newspapers praise them and families often take out full page advertisements of the

369 Justice 1997: 217 370 Justice 1997: 212 371 Justice 1997: 236 372 Murata 2010 373 Justice 1997: 197. Ch. 9:34

148 practice.”374 The same report refers to 93-year-old Keila Devi Hirawat who entered sallekhanā in

September 2006 and whose daughter-in-law Nirmala Hiravat is quoted as saying: “She has brought name and fame to our family.”375 For this family, social reputation is clearly a major concern and potential householder candidates for the practice might well consider this when weighing various factors in their decision-making. Jain families and communities can also contemplate reducing the public adulation of sallekhanā to ensure that it does not cause undue pressure on people. This could also be a means to reduce the negative attention and criticism the practice has received. It is here that we can again consider the concepts of hard and soft voluntariness which, as mentioned earlier, have as their basis James’ elucidation of determinism going back almost a century and a half. A more recent exploration of volition by author and

Professor of Jurisprudence Joseph Raz distinguishes, rather, between thick and thin wants and/or desires:

The two senses of ‘want’ identify two ways in which the fact that someone did something because he wanted to can explain the action. If the want is a thin‐want the explanation is merely that the action was intentional. If it is a thick‐want the explanation is that the action was intentional, and that the agent was not merely doing what reason required. He was following his desires either to do willingly what reason dictates, or to choose among rationally eligible options, or to go against reason.376

Raz also states that “if we do it for [a] reason we do it intentionally. It is of course false that if we do it intentionally, that is for a reason, then we do it because we want, in the thick sense, to do it.

We may very much not want to do it, and do it for [a] reason all the same.”377 It might be slightly confusing to bring the concepts of James and Raz together since soft determinism seems to map more closely onto thick-wants, as decisions in both of these binaries are based on the agent’s volition rather than another source (such as fate or reason). From this I again define “soft

374 BBC 2009 375 BBC 2009 376 Raz 2002: 111 377 Raz 2002: 116

149 voluntariness” as decision-making that involves only processes internal to the person, and “hard voluntariness” as decision-making free from external hindrances. For sallekhanā, there would be soft voluntariness if there has been no internalization of anything that could hinder choosing freely for oneself by oneself, such as the person not choosing the fast from it being a normative imperative for Jains or from knowing that the family of someone who engages in sallekhanā will have increased reputation in the community. Even if the sallekhanā candidate does not seek reputation for themselves by way of the practice, to seek it for one’s close ones would still be out of accord with the required Jain soteriological intention that is far from such worldy concerns.

Another way soft voluntariness can be assured with sallekhanā would be to have freedom from cognitive interferences that hinder capacity, such as delirium or dementia. This will be discussed below in the section on RDE. Hard voluntariness would be met if there is no external influence on the individual, such as that which might come in the form of someone encouraging another to engage in sallekhanā.

Pain Management: There is not agreement on the experience of the person who has stopped eating and drinking. The CCB had this to say in a decision for a case having to do with the removal of artificial feeding and hydration:

In this case the artificial feeding tube would be discontinued and he would be allowed to die naturally. His life would be shorter but he would have better quality of life. Without fluids he would die within 7 - 10 days. As his stomach has shrunk he would be unlikely to experience hunger. With good mouth care and moisturizing of the skin he is unlikely to experience thirst.378

Social Worker McCormick supports this perspective and gives a more scientific explanation behind the loss of hunger and thirst since

several benefits…accrue during the natural process of dying. The deprivation of food leads to endogenous opioid production and natural pain relief, and the ketosis that develops produces somnolence and euphoria which can aid a dying person. There is also a reduction

378 C.D. (Re), 2007, emphasis added.

150

in gastric distention and a reduction in the urea cycle metabolites which reduce sensation in general.379

The Royal Dutch Medical Association’s Committee on End-of-Life Decisions in Severely Ill

Newborns holds a view in contrast to this CCB and McCormick, and states that “[t]here is also not sufficient knowledge about possible suffering as a consequence of withdrawing nutrition and hydration. Because it cannot be excluded, physicians need to discuss comfort care, including sedation, with parents.380 Despite that particular CCB showing some confidence in their view of hunger not being present and thirst being manageable in the person who has their nutrition and hydration stopped, they not only “directed [the SDM] to consent to discontinuing [the incapable patient’s] nutrition and hydration,” but also “to consent to the administration of sufficient pain medication to control [the incapable patient]’s pain...”381

As with the CCB for this incapable patient, and counsel for the PIL against sallekhanā in

India, I am similarly concerned with the need for pain management at the end of life for those who need it. Although there are means to bypass the mouth to achieve nutrition and hydration, we might assume that these are all incompatible with sallekhanā. However, since medication falls under its own category which is neither a form of nutrition nor hydration, would it be allowable for Jains to take medication that is incorporated into the blood stream directly and not by way of the digestive process? There are some sources that indicate that medicine is also to be abandoned during sallekhanā, such as the Samādhi Bhavana prayer quoted earlier, which admonishes the practitioner to “slowly give up food/water, thoughts of activities, longevity or medicines [are to be] abandon[ed].”382 But what about bypassing digestion?

379 McCormick 2013: 217 380 Willems/van Wijlick 2014: e1165 381 C.D. (Re), 2007 382 ND-111014-JPHD-002

151

Dr. Whitny Braun, an American scholar and bioethicist who has researched sallekhanā and appeared in a program by National Geographic on the topic, also spoke at the 2016 Delhi symposium. Braun told me an upsetting story of a Jain woman who was undergoing sallekhanā in the U.S. who requested pain control and received IV morphine, which a family member criticized saying that it was thus not really sallekhanā. This enrages me, in the context of family supporting a loved-one during the dying process, because the level of religiosity and engagement with a religion’s normative tradition, especially for a layperson, is up to the person themselves.

This is why the Ontario Human Rights Commission (OHRC) recently redefined “creed” to be something that inheres in the person and not in religions:

The [Ontario Human Rights] Code does not define creed, but the courts and tribunals have often referred to religious beliefs and practices. Creed may also include non-religious belief systems that, like religion, substantially influence a person’s identity, worldview and way of life. People who follow a creed, and people who do not, have the right to live in a society that respects pluralism and human rights and the right to follow different creeds.383

Such would allow for people to have variation in their understanding of established religious traditions, and even potentially provide for a mixture of belief systems. In what was my first clinical ethics case, a Catholic family was refusing to withdraw ventilation support from their loved-one saying that it is a theological imperative to keep people alive at all costs. We often refer to this as being “vitalist.” In this case, clinicians felt that there was no reasonable chance of recovery, and there also was an advance directive that stated that the person did not want to be kept alive if interventions became futile. Unfortunately, as is too often the case, the text was boilerplate and the family contested the validity of the clause in the document on the basis of both the standardized text and saying that language barriers prevented the patient from understanding its contents. The family was told that, in fact, Catholic theology allows for the withdrawal of burdensome treatment if not in the best interests of the person, to which they

383 OHRC

152 replied that they were “not that kind of Catholic” and would “find our own sources.” This was despite the fact that such a position was achieved by consensus during deliberations by Bishops across Canada. This was a fascinating and frustrating part of this case, but hard to defeat such logic even though it was not clear what the patient themself would really have wanted under such circumstances. The clinicians refused to go to the CCB, against our recommendations, and the patient lingered non-interactively for a least a year, if not more. Point being, people have the right in Ontario to give any basis for creed even if not aligned with the normative tradition, for better or for worse. People also have the right, not just by jurisdiction but globally, to not be in pain since

[a]ccording to international human rights law, countries have to provide pain treatment medications as part of their core obligations under the right to health; failure to take reasonable steps to ensure that people who suffer pain have access to adequate pain treatment may result in the violation of the obligation to protect against cruel, inhuman and degrading treatment.384

How is criticizing a dying relative for the way they practice helpful to the dying person, especially under the conditions of uncontrolled pain? It hardy seems compassionate.

Reducing intake, stopping intake altogether and austerities are all relevant to sallekhanā with “[d]iminished diet…intended to develop vigilance in self-control, suppression of evils, contentment and study with ease,” fasting used “to promote self-control and discipline, destruction of attachment, destruction of karmas and attainment of meditation and scriptural knowledge,” and mortification “to cultivate patient endurance of bodily pain and suffering, in order to remove attachment to pleasures.”385 Mortifications such as “different postures”386 apply to the stricter versions of sallekhanā in which motion is restricted to a limited area or requiring a single posture. Pain endurance, to be sure, receives a lot of attention in Jainism. The Ācārāṅga

384 Lohman et al. 2010: 1 385 Jain 2013: 133-134 386 Jain 2013: 133

153

Sūtra advises the one who fasts in this way: “Without food he should lie down and bear the pains which attack him,”387 and again, “[a]fter the asravas388 [influx of karmas] have ceased, he should bear (pains) as if he rejoiced in them.”389 Because of the value given to incorporating pain into

Jain religious practice, a Jain “practising physical austerities to be rid of the longing for bodily comfort and ease”390 might not be actually seeking the comfort that pharmacological pain management and symptom control can provide and which are the two main areas of support in palliative care models. By symptom control I mean that which counteracts such things as can accompany the dying process: increased secretions (which can hinder breathing), nausea, constipation (which often comes with the use of opioid analgesics) and so on. Regardless of the push to incorporate pain into religious practice, there are many examples of Jain monastics rubbing the limbs of someone undergoing sallekhanā from available photographic and video footage, a form of symptom control likely to counteract the atrophy and deconditioning that comes from being bedridden.

If we consider the three iterations of the sallekhanā vows, distinguished by degrees of assistance and immobilization, how might pain management fit, if at all? Firstly we need to address the fact that all versions of the vows include refraining from eating and drinking, or the ingestion of solid (and liquid) nutrition and hydration. We might also assume, by extension, that sallekhanā vows would contraindicate other means (or routes) to provide nutrition and hydration artificially, such as with an IV catheter or by way of a tube larger in diameter, such as by: oral- gastric tube (OG-tube, through the mouth to the stomach), naso-gastric tube (NG-tube, through

387 Jacobi 1884: 75 388 In IAST, āsrava. Williams defines the term in the Jain context as “influence or action of body and mind and speech in impelling the soul to generate Karma” and “the action of the senses which impels the soul towards external objects (Williams 2008: 162).” 389 Jacobi 1884: 76 390 Jain 2013: 135

154 the nose to the stomach), gastrostomy tube (G-tube, surgically inserted directly into the stomach) or jejunostomy (J-tube, surgically inserted directly into the small intestine). Tube-feeding is often used when patients have swallowing difficulties, whereas total parenteral nutrition (TPN) is used in more extreme cases such as with stomach where digestive absorption is somehow impeded. Despite there being means to bypass swallowing, any means of gaining nutrition and hydration are likely prohibited to the person undertaking sallekhanā.

Even though there were attempts to inject into veins dating back to the seventeenth century, we can safely call the IV a relatively new technology in medical history since it was the world wars that brought it into modern practice, with the greatest advances starting in the sixties.391 There is evidence, however, that NG tubes existed in ancient India at the time of both

Mahavira and the Buddha (circa mid-500 BCE) and specifically for the purposes of medical intervention. This is indicated in the Pāli Buddhist monastic code by an allowance in the precepts for having medicinal substances for head pain administered by way of a nose-tube,392 as well as mention of nasal therapy. According to Zysk, such an intervention closely resembles techniques described in the ancient Sanskrit medical texts Caraka-saṃhitā 393 and Suśruta-saṃhitā 394

“indicating a common origin for treatments of diseases of the head and continuity in medical doctrine.”395 When treating, it is said “the physician should administer warm, medicated nasal oil

391 Millam 1996 392 Thanissaro Bhikkhu 2013b: 57, 62 393 Caraka is the “[n]ame of a muni and physician (the Serpent-king śeṣa, who was the recipient of the āyurveda; once on visiting the earth and finding it full of sickness he became moved with pity and determined to become incarnate as the son of a muni for alleviating disease; he was called caraka because he had visited the earth as a kind of spy or cara; he then composed a new book on medicine, based on older works of agniveśa and other pupils of ātreya) (Williams 2008: 389).” Saṃhitā is a compendium or “any methodically arranged collection of texts or verses (Williams 2008: 1123).” 394 As with Caraka, Suśruta is the name of the author but also literally means “well-heard” or “very famous (Williams 2008: 1237).” Although both medical texts with contested dates of authorship, the Suśruta-saṃhitā has a surgical focus. 395 Zysk 1991: 92

155

(sneha)396 by means of a type of pipette (paraṇāḍī)397 (or, according to Suśruta a shell

[śuktī]398.”399 Despite the long history of the NG tube for drug delivery, in contemporary medicine all of the above mentioned routes can and are used to provide nutrition and hydration in addition to medication administration. We have ruled out all means of nutrition and hydration during sallekhanā, but since medication falls under a different category – albeit porous since some foods are used as medicine - which is neither a form of nutrition nor hydration, would it be allowable to take medication that is incorporated into the blood stream via the digestive process?

There seems to be no fixed position on the usage of medicine by Jain monastics save a strong avoidance of harm to animals.400 There are some indications that Jains use natural remedies, such as this advertisement in the Jaina-Gazette for what is likely natural medicine:

“Every medicine is prepared scrupulously in accordance with the instructions laid down by Śrī

Pūjya Pāda Swāmi. Our preparations are so clean that they are useful to both laymen and monks.”401 It is not clear what “clean” means in this context: perhaps not having caused any harm during production, or being free from some other form of physical or spiritual pollution?

Earlier I mentioned an Āyurveda clinic in the Pink City of Jaipur run by Sri Sushil Kumar

Vaidya, an eighty-three year old Digambara Jain and renowned Āyurveda practitioner. In

396 Sanskrit for “oil, grease, fat, any oleaginous substance, an unguent (Williams 2008: 1267).” 397 I have been unable to find this term in Sanskrit dictionaries. Praṇāḍī, however, translates as “drain (Apte 1996).” 398 Sanskrit for “a small shell or cockle” as well as “a portion of a skull (used as a cup etc.)” and “a bone (Williams 2008: 1080).” 399 Zysk 1991: 92 400 Dalrymple 2009. The issue of refusing biomedicine on the moral and religious grounds of non-harm to animals is fascinating, both on the grounds of consequentialism (such as the concern over karmic effects of ingesting animal products itself) and deontological justice (that one ought to not be complicit even indirectly in the harm that comes to animals when their bodies are used to test or produce medicine). What about non-drug medical interventions that have had animal testing in the past? Are these also to be foregone? Following this topic could lead to a lengthy discussion beyond the scope of this paper, and indeed might even warrant a dedicated study unto itself. Thanks to my colleague Dr. David Langlois for lively and insightful discussions on this and some other issues contained in this paper. 401 von Glasenapp 1999:159 re: Jaina-Gazette, XX, No. 1.

156 spending some time at the Ārogya Bharti402 clinic and through interviewing the Dr. Kumar, his brother and a devotee/patient (Naveen, mentioned earlier), I learned that in addition to tirelessly providing free services to people of all backgrounds, including Jain monastics, the Dr. Kumar also gives meditation instructions and holds courses in the production of Āyurveda medicine.403

So, some Jain monastics and householders utilize natural remedies, and although there are Jains who would avoid biomedicine both on the grounds of their chemical composition causing side- effects and attempting to avoid harm to animals, there are some Jains who take biomedicine. For monastics, in some cases it seems to be dependent on the severity of the illness.404 Although likely referring to the traditional and allowable medicines of the age, we could ask how we could interpret and apply the importance given to medicine for monastics in the Kalpa Sutra where it says that “[d]uring the Pajjusan405 monks or nuns are not allowed to travel farther than four or five Yojanas406…And this only in case of need, to fetch medicine, &c...”407

One hint that the distinction made between food/drink and medicine with regard to Jain fasting is a false one comes in the form of one particular fasting vow called “Cauvihaar:408 This vow involves abstinence from any kind of food, drink or medicine between sunset and sunrise.”409 Although it is not made clear if this means refraining from all medicines regardless

402 Ārogya means “freedom from disease, health” in Sanskrit (Williams 2008: 151) and Hindi (McGregor 1993:92). If this is the correct rendering, this can mean many things since bharti has about thirty meanings in Sanskrit. It could mean “support,” “balance,” “take care of” or “lift up (spokensanskrit.org),” so together with ārogya can mean “health support.” If the second word is instead bhāratī, it could mean “Indian health.” 403 J-112614-JND-007 404 Dalrymple 2009 405 Annual rainy season. In Sanskrit, this is paryuṣaṇa (Müller et al. 1999: 106). This leads me to believe that the Prakrit spelling should instead be pajjuṣan or pajjuśan . 406 Williams gives it as “especially a particular measure of distance, sometimes regarded as equal to 4 or 5 English miles, but more correctly = 4 krośa or about 9 miles; according to other calculations = 2 1/2 English miles, and according to some = 8 krośa) etc (Williams 2008: 858).” Based on these discrepancies, this would make the range for this unit of distance measurement anywhere between 4 and almost 30 kilometers. 407 Jacobi 1884: 310 408 This term seems to be related to chāyāvyavahāra which translates as “measuring the shadow cast by the sun on the dial (Williams 2008: 406),” and fits the context well. 409 1998: 119

157 of the route of entry, as a type of fasting vow it would at least mean not to take anything by mouth and is one example of the collapsing of the food/drink-medicine boundary.

It would seem that in the third and strictest form of the vow, pādapopagamana which does not allow for any assistance or movement, there would be no room for pain control interventions. It would not even permit the natural symptom control mentioned earlier, in the form of massage. It is interesting to note here the great emphasis placed on fasting alone in both public and academic discourse on sallekhanā, almost to the complete exclusion of the other two key components of assistance and movement, especially given that the third version of the vow specifically refers to the lack of movement required when translated by some to mean

“remaining motionless like a felled tree.” 410 Despite some evidence presented above that medicine in addition to food and water might also be given up when undertaking sallekhanā, for the sake of argument let us contemplate Jains who would not be entirely averse to taking biomedicine and consider medicine administered to a Jain undergoing the first iteration of the sallekhanā vow (Bhaktapratyā-khyāna in which one can receive assistance) but not by ingestion.411 By this I mean medicine that reaches the bloodstream directly without going through the process of digestion, by the oral route of sublingual (melting under the tongue) or parenteral routes (injection into body tissues)412 such as IV, intramuscular (IM), subcutaneous

(Sub-Q) or intradermal (ID). I will avoid including the oral route of buccal (BUC) administration which involves “placing the solid medication…against the mucous membrane of the cheek” because it can either act “locally on the mucosa or systemically as it is swallowed in a person’s

410 Jacobi 1884: 77 411 Although this first and least strict version of the vows does have room for taking water, for this line of reasoning we might think that mixing water with medicine would change its nature from mere water to being medicine. 412 Potter et al. 2001: 894

158 saliva”413 and I want to fully distinguish medication routes that avoid digestion. IV is a familiar route of supplying both hydration and medication by injection into a vein. Medication delivered by IM are injected directly into a muscle and commonly are done in areas of the body that have thicker muscles, such as the thighs, upper arms or buttocks. IM “provides faster medication than the subcutaneous because of muscle’s greater vascularity.”414 Sub-Q injects “into tissues just below the dermis of the skin”415 and is often used in palliative care for pain control with a device called a syringe driver that can be programmed to release medication at intervals. ID is injected

“into the dermis just under the epidermis.”416 The oral route of SL is quite fascinating because of its rapid absorption, minimal invasiveness and effectiveness for those who have swallowing difficulties, which would include many (if not most) at the end of life:

Sublingual, meaning literally 'under the tongue' refers to a method of administering substances via the mouth in such a way that the substances are rapidly absorbed via the blood vessels under the tongue rather than via the digestive tract… Systemic drug delivery through the sublingual route had emerged from the desire to provide immediate onset of pharmacological effect. Dysphagia (difficulty in swallowing) is a common problem of all age groups, especially elderly,…nauseated or on reduced liquid‐ intake/diets have difficulties in swallowing these dosage forms… The absorption of the drug through the sublingual route is 3 to 10 times greater than oral route and is only surpassed by hypodermic injection. For these formulations, the small volume of saliva is usually sufficient to result in tablet disintegration in the oral cavity. Sublingual absorption is mostly rapid in action, but also short acting in duration.417

Suffice it to say that if it were permissible for someone undertaking the least strict version of the sallekhanā vows to be administered medication, and if it were not allowable to do so by way of digestion, there are a variety of alternate ways to deliver medication. Perhaps these would be preferred to digested medicine since when the earliest Jain texts were composed, there were only oral and topical means of delivering medicine. This is important both for pain control and also

413 Potter et al. 2001: 894 414 Potter et al. 2001: 939 415 Potter et al. 2001: 894 416 Potter et al. 2001: 894 417 Narang/Sharma 2011:18

159 for another aspect of “comfort measures” in palliative care: symptom management. The massage mentioned earlier is a non-invasive means for dealing with some physical symptoms, and because it is done so often it is likely allowable by the least strict version of the vows. In terms of medications used for symptoms management, these would be anti-emetics (for nausea and vomiting), anti-secretions, anti-anxiety and even anti-psychotics when signs of dementia appear during the dying process.

In one contemporary example, pain was the trigger leading to entering sallekhanā for one young nun when “her pain was so great she decided to take sallekhana, even though she was aged only thirty-six.”418 We might think that for this nun the release of death would be preferable to the pain she is enduring, and question if her intention was in fact to die. However, the collateral history from her co-initiate offers another way to look at the nun choosing sallekhanā since “if you do it slowly and gradually, in the prescribed way, there is no pain; instead there is a gentle purity in all the privations.”419 The process of sallekhanā, then, could itself perhaps bring pain relief. This is reinforced by another scholar who points to the benefits of an incremental approach to the austerities of sallekhanā: “The gradual process of self-mortification is psychologically significant. It is not to be a slow death, nor is it meant to intensify the rigour of mortification. The primary motive is to make the person physically and mentally prepared to accept the inevitable end to lighten the burden of pain.”420 Others have also considered natural means of pain relief at the end of life, such as some of my informants, and we will explore this further in the next chapter on pain management and hospice palliative care. The intention of the young nun remains unclear, but leads us into the next sub-section in which intention features prominently.

418 Dalrymple 2009: 5 419 Dalrymple 2009: 5 420 Kalghatgi 1969: 190

160

4. The Rule of Double-Effect (RDE)

The RDE originates from the thirteenth-century Christian theologian Aquinas and in its simplest form states that an action is ethically permissible if there are bad consequences which are foreseeable but unintended. Because intention is crucial in determining sallekhanā candidacy, and the RDE is used in medical decision-making, I thought that it would be a useful exercise to see if sallekhanā passes the RDE test.

The traditional and full form of the RDE is given as the following:421

A person may licitly perform an action that he foresees will produce a good and a bad effect, provided that four conditions are verified at one and the same time: 1) that the action in itself, by reason of its very object, be good or at least indifferent; 2) that the good effect and not the evil effect be intended; 3) that the good effect be not produced by means of the evil effect; 4) that there be a proportionately grave reason for permitting the evil effect.422

Such logic is most commonly applied to palliative sedation423:

The ethical justification for…[palliative sedation], commonly used by doctors in the United States, is the doctrine of double effect, which permits actions that may hasten death, so long as the intention of the caregiver is to relieve the patient’s pain and suffering, not to cause death. This principle also defines the general legal stance in North America.424

In palliative sedation there is the “supplying of…pain relief to a suffering patient at the end of life, even when foreseeing that the patient’s life may thereby be shortened.”425 By this, sedatives such as benzodiazepines can be combined with opioid pain medication such as morphine, both gold standards of their respective drug classes, can justifiably be delivered in increasing dosages

(or upwards titration) until sedation and comfort have been achieved even though respiratory function can be increasingly suppressed. Less of a concern for a healthy person even of advanced

421 Lindbald et al. 2014: 369 422 Mangan 1949: 43 423 Sometimes also referred to in the literature as “Palliative Terminal Sedation Therapy,” but some are averse to this terminology because of the word “terminal” which may imply hastening death. Thanks to my ethicist colleague Frank Wagner for alerting me to this. 424 Willems/van Wijlick 2014: e1166 425 Lindbald et al. 2014: 369

161 age, for a person with disease or co-morbidities, especially one nearing the end of life with increasingly failing organ function, the vulnerability to respiratory distress or failure is significant.

In its typical health care application, such as palliative sedation, the RDE is deployed with regard to an action or an inaction performed by one person in relation to another person.

With Jain VSED, rather, the RDE will be deployed with regard to an action or an inaction performed by the person themselves and in relation to themselves alone. I am not considering sallekhanā as applied to a person who is incompetent or unconscious, where others would stop providing nutrition and hydration to the person based on their previously expressed capable wish or in their best interests in the absence of such a wish, although the issue of advanced directives for sallekhanā is a fascinating one that deserves more study.

For the purposes of this section, the RDE will be applied to Jain VSED to determine if it meets the four conditions unreservedly or with restrictions. Since Jain explanations of sallekhanā still to this day have not convinced detractors that it is not a form of suicide, it will not be enough to analyze the practice by Jain standards alone. As such, both Jain and non-Jain perspectives must be made to interact to find the answers. And for the sake of narrowing the argument, I will only focus on the second part of the RDE.

The second RDE condition that the good effect and not the evil effect be intended

“He should not long for life, nor wish for death…” Ācārāṅga Sūtra426

I see this RDE condition as the main sticking point when analysing VSED with regard to its usage by Jains at the end of life. When the RDE is applied to palliative sedation, the “good effect” would be comfort or freedom from pain, and the “evil effect” supressed respirations

426 Jacobi 1884: 75

162 and/or respiratory arrest. In this context I distinguish “respiratory suppression/arrest” from

“death” since they are temporally and conceptually distinct, and palliative sedation done well does not cause death in the way that MAiD does: by lethal drug overdose. Palliative sedation done well might suppress respiration to some extent, but we might think of respiratory arrest and death being caused by the underlying disease processes, the same processes which cause the pain in need of control. In the case of sallekhanā, the “good effect” could be seen as freedom from an overly burdensome life-sustaining measure427 and the “evil effect” terminal dehydration. I give terminal dehydration as the cause of death in VSED in accordance with Lachman who also estimates that it takes one to three weeks to result in death,428 and the fact that death by dehydration would precede a death by wasting that would come from malnutrition. Note the symmetry: with both palliative sedation and VSED I have not listed the evil effect as death, as this would be too vague, but rather a more specific untoward effect of each. Also with both, a natural death occurs, as it ultimately would without pain control or VSED, but absent a particular burden.

Again, palliative sedation and VSED contrast in terms of which person’s intention is relevant. With palliative sedation it is the treating clinician, with VSED it is the person or patient himself/herself. Intention, by virtue of being subjective, is impossible to accurately measure by anyone other than the person who holds the intention. If the person who chooses VSED intends the “evil effect” of terminal dehydration, then VSED in that case would fail the requirements of

RDE without even getting to the third and fourth conditions. One might argue that if the person intends any other effect than the “evil effect” specific to VSED, such as a natural death from the disease process unrelated to dehydration, that this condition would be met. However, the

427 Again, for VSED, I reserve the terms “treatment” and “intervention” for artificial nutrition and hydration only. 428 Lachman 2015

163 condition appears to be strictly require not only the absence of intending the “evil effect,” but also intending the “good effect.” According to Lachman, “[w]ith terminal dehydration, competent patients with a terminal or incurable illness seek death by forgoing artificial nutrition and hydration or by ceasing to eat or drink.”429 Seeking death might be so is some cases, but it is a broad overstatement that this is necessarily so. I am arguing that there can be those who do not seek death when choosing VSED, such as those Jains who practice sallekhanā who actually meet the normative requirement of the ritual of not seeking death. By this, I am also leaving open the possibility that there might be Jains who decide to enter into sallekhanā who do not meet the normative requirement of not seeking death. To assume that anyone who thinks it is an appropriate time for them to enter sallekhanā necessarily has an intention that would meet both the requirements of RDE and the religious standards in Jainism would be a grave mistake, I feel, as with presuming the mental capacity to make such a decision. My position in this regard, as with the need for determining capacity, is not meant to be controversial nor disrespectful to the

Jain tradition. There have been internal safeguards operating within the tradition for thousands of years, but despite these it remains a contested practice by outsiders. I recognize that it might not be comfortable to consider the possibility that some Jains who want to engage in sallekhanā might not have enough capacity to make this decision, or who might have capacity but not the correct intention, but it is because of the possibility of vulnerability and seeking death that I suggest safeguards and oversight to legitimate the practice to detractors by preventing sallekhanā being done inappropriately.

How to establish or prove intention, then? This is something that can be included within the safeguard of informed consent. Since in health care mental capacity is the bedrock upon which making an informed decision is based, perhaps when it is assessed the question of

429 Lachman 2015: 56

164 intention can also be addressed. Who would be best to establish or prove intention? Presumably, as an expert in sallekhanā and someone who knows the religious development of the student making the request, the teachers that would be sought for permission can appropriately assess if a person would be able to undergo the rigors of the practice. As for the diagnosis of disease, lifespan prognosis and intractability of pain, even though pain is subjective and established by the person him or herself, with both disease and pain it is a physician who has the skills to assess for these. And are religious teachers able to assess for mental capacity? Determining capacity for an end of life decision, and especially an irreversible one, is not an easy task and is intimately tied up with the health status of the person and potential cognitive interferences with capacity, such as dementia or delirium, which have varying possible causes. Again I am suggesting that

Jain teachers who would be sought for sallekhanā permissions work in collaboration with medical doctors (or trained capacity assessors) when determining the readiness of an adherent for the practice. This is to say that there can be some overlap, such as with establishing intention, which seems to have been included in candidate assessments since the practice started to be engaged in by those other than the founders. This is not to say that there needs to be rigid jurisdictional boundaries between them. Since it seems that both a religious teacher (for permissions from a religious perspective) and a physician (for terminal disease diagnosis, lifespan prognostication and capacity and pain assessment) are needed, they can use their respective expertise to query the intention of the petitioner. Not that getting at intention is simple. Some even criticize the RDE for not explaining why intentions matter morally at the end of life at all,430 but for the case of sallekhanā intention is the axis upon which harm and harmlessness rests. Even if one intends to stop the karmic influx that comes from eating and drinking, logically if one is engaging in the practice for the purposes of dying there will be a

430 Lindblad et al. 2014: 368

165 karmic influx for the harm one is intending to do to oneself. Although directed at clinicians, the following is highly relevant nonetheless:

…intentions in the setting of end-of-life care may be multiple and ambiguous431, and respondents may have limited insight into their own intentions, or may recall them inaccurately, particularly in light of societal pressures that approve some intentions and disapprove of others.432

All of these issues, I would say especially the extremely high expectations as to the purity of Jain monastics by the lay community, can confound the locating, eliciting and expressing of intentions. This gives even more reason for experts in their respective fields of religion and medicine to work together with their unique insights and means to get as close as possible to the sallekhanā candidate’s intentions.

If by means of a collaborative approach between religious teachers and medical doctors it was established that a person had the intention for the evil effect, terminal dehydration that would result in death, then in that case the candidate would not meet the conditions of the RDE. The potential for some people to not pass the RDE test does not mean that sallekhanā in general does not pass the test, but that its permissibility or impermissibility can be found on a case-by-case basis.

Part 2 Buddhist Voluntary Fasting and Immobilization at the End-of-Life: tukdam433

In Tibetan, thugs literally means “mind” and dam “to hold,” so the term can be translated as “holding something good in the mind.”434 This tantric final meditation, which we could call a form of samādhimaraṇa, involves immobilization in yogic posture and the stoppage of eating

431 T.E. Quill. “The Ambiguity of Clinical Intentions.” N Engl J Med 1993; 329: 1039–1040. 432 Douglas et al 2008: 389 433 Tibetan Wylie: thugs dam. This term has multiple translations, but most hover around meaning personal or daily practice, meditation and commitment (Pellegrini 2011). Thugs also means “heart” so can also be translated as “holding something good in the heart (Pellegrini 2011).” 434 Translation by Geshe Sonam Ngodrup formerly of Maitreya Instituut, Amsterdam and more recently appointed as resident teacher at Lama Yeshe Ling in Burlington, Ontario.

166 and drinking and entering a state of samādhi (or meditative absorption) where the vital signs cease, and where the body does not display the signs of death (such as the loss of heat, rigor and decay) for a period of up to two weeks. Buddhist textual references to Tibetan tukdam, and

Indian death samādhi, have been difficult to locate. The most recent media mention of tukdam is from an in January of 2017:

Khenpo435 Karpo who passed away on Wednesday morning at Bumrungrad hospital in Bangkok, Thailand is still in a deep meditative state (Thukdam)... Great Buddhist masters in their texts have said that Thukdam is recognition of the nature of mind at the moment of death, and awakens into the state of luminosity. Only highly realised practitioners manifest the luminosity that lasts a number of days.436

The article gives the internal cause of the state, from what seems to be commentarial texts that discuss tukdam. An excerpt from the great Pali commentarial text Vishuddhimagga (Path to

Purification) from the Indian master Buddhaghosa in the fifth century CE gives a story of an elder monk meditating and achieving Arhatship437 just prior to his death:

The Elder Saògharakkhita the Great (Mahá Saògharakkhita), aged over sixty, was lying, it seems, on his deathbed. The Order of Bhikkhus438 questioned him about attainment of the supramundane state. The elder said: “I have no supramundane state.” Then the young bhikkhu who was attending on him said: “Venerable sir, people have come as much as twelve leagues, thinking that you have reached Nibbána.439 It will be a disappointment for many if you die as an ordinary man.” - “Friend, thinking to see the Blessed One

435 Tibetan Wylie: mkhen po. Usually means “Abbot” but also can refer to an advanced degree. 436 Kuensel Online 2017 437 The Arhat (or Arahant in Pali) status comes with attaining nirvāṇa (nibbána in Pali), or liberation from cyclic existence. Both the Southern and Northern schools of Buddhism agree that this is not identical with the fully enlightened state of Buddhahood, but it is only the Northern Schools that hold that anyone has the potential for full enlightenment since the Southern Schools hold that Arhatship is as much as anyone can soteriologically achieve, save for the Buddhas of each world age. For this word, Williams gives “worthy, venerable, respectable,” “praised, celebrated” and “the highest rank in the Buddhist hierarchy (Williams 2008: 93).” 438 Bhikṣu is the Sanskrit for a fully ordained Buddhist monk, literally meaning “beggar” or “mendicant (Williams 2008: 756).” The equivalent Tibetan term gelong (Wylie: dge slong) combines the two Sanskrit meanings mentioned above into “virtue beggar.” 439 Nirvāṇa in Sanskrit. Literally can mean “blown or put out, extinguished (as a lamp or fire), set (as the sun), calmed, quieted, tamed…, dead, deceased (literally having the fire of life extinguished), lost, disappeared (Williams 2008: 557).” So, that it is deployed for the state in which the delusions and afflictions are eliminated makes good sense. However, there are those (mostly in the Southern Schools of Buddhism) that feel that at parinirvāṇa, or “nirvāṇa without remainder” which is the point at which a liberated being leaves off the body, the consciousness is severed so “blown out” fits well from this perspective.

167

Metteyya,440 I did not try for insight. [48] So help me to sit up and give me the chance.” He helped the elder to sit up and went out. As he went out the elder reached Arahantship and he gave a sign by snapping his fingers. The Order assembled and said to him: “Venerable sir, you have done a difficult thing in achieving the supramundane state in the hour of death.”—“That was not difficult, friends. But rather I will tell you what is difficult. Friends, I see no action done [by me] without mindfulness and unknowingly since the time I went forth.441”442

Although gaining what some see as the highest state while on his death-bed, by this account

Mahá Saògharakkhita did not enter the death state while in meditation.

We now turn to contemporary Tibetan Buddhist insider views to help give us a better sense of tukdam in their own words.

Expert and Informant Views on tukdam

In discussing the topic in text, His Holiness the fourteenth Dalai Lama distinguishes between the deaths of ordinary people and highly trained Buddhist practitioners:

For most people death occurs when the subtlest level of mind manifests. The most subtle consciousness usually remains in the body for three days, unless the body has been ravaged by disease, in which case it might not remain even for a day. For a capable practitioner, this is a valuable opportunity for practice. Those who are conscious of the mind of clear light can remain in this state for longer periods and, depending on previous training, can even use it to realize the truth of the emptiness of inherent existence of all phenomena, including cyclic existence and nirvana.443

This serves as the logic behind Buddhist requests in hospital to not disturb the body post-mortem for at least three days, requests that I helped facilitate multiple times while a caregiver.

Managing such requests in hospital required much negotiation between families, care teams, porters and morgue attendants. The main point of His Holiness is that there is a natural process of the arising of the clear light mind at death, and that some advanced Buddhist meditators are

440 Maitreya in Sanskrit, literally meaning “friendly, benevolent (Williams 2008: 834),” is also the name of the Buddha of the next age, Shakyamuni Buddha being the Buddha of our current age. 441 “Going Forth” is an epithet for ordination, or going forth into homelessness. 442 Buddhaghosa 2010: 45 443 Dalai Lama 2003: 150

168 able to harness this experience to achieve realizations of the nature of reality, a crucial component on the path to enlightenment as understood in Indo-Tibetan Buddhism. But what happens to those who are able to abide in this most subtle level of consciousness? His Holiness explains further:

Several here in India have been able to stay within the mind of clear light for many days – one for seventeen, others for nine or ten. As a sign of this, after their breathing stopped, their bodies remained completely fresh, without the slightest foul odor, for all that time in this hot country. Such persons are able to remain without fluctuation in the mind of clear light of death, and die with tremendous confidence and joy.444

Such exemplary deaths are remarkable, indeed, and have both external signs and experiential benefits as well.

Prof. Ven. Samdhong Rinpoche445, Lobsang Tenzin, reinforces and further elaborates on the extraordinary nature of this post-mortem state and gives some specific contemporary examples of tukdam. Samdhong Rinpoche was the first Prime Minister (Kalön Tripa)446 of the

Tibetan Government-in-exile and is an eminent scholar who previous to embracing the Middle

Way approach to the occupation of Tibet was famously a proponent of satyāgraha, 447 non- violent civil disobedience. Over the years, we have seen each other in passing at religious events and on the parliament campus, grounds which are shared with the LTWA, but have never spoken in person. However, one day after class a European tourist who was staying on the same property as myself offered me a ride home on his motorbike. The property was owned by a physician, and

444 Dalai Lama 2003: 114 445 Tibetan Wylie: rin po che. This is a title meaning “precious one” and usually reserved for recognized reincarnated teachers or Tulku (Wylie: sprul sku) which is “[l]iterally, ‘apparitional body’” or “manifested body… ‘Emanation body,’ ‘form of magical apparition.’ The aspect of enlightenment that can be perceived by ordinary beings (Pellegrini 2011: RY).” The term Lama, Wylie: bla ma is equivalent with the Sanskrit Guru both for “spiritual guide” or “teacher”. Tulkus may or may not be Lamas, and Lamas may or may not be Tulkus. 446 Wylie: bka' blon khri pa or “Chief of Cabinet (Puri 2012).” This position is now known as (Wylie: srid- skyong) or “Tibetan Political Leader (Puri 2012).” 447 Sanskrit for “the practice of non violence (spokensanskrit.org),” Mahātmā Gandhi ji gave this term as the “effort to discover, discern, obtain or apply the Truth (spokensanskrit.org).” The civil disobedience movement is known as satyāgraha āndolana.

169

I lived in a small cottage and the tourist lived in a room connected to the doctor’s house. I grew very close to the doctor, Dr. Marwah, and his wife Bhavana, and was looking forward to seeing them when I came back to Dharamsala for the first time in a decade to do research in 2015. Alas, his wife was away and I heard that Dr. Marwah had recently passed away from a sudden heart attack. I had previously noticed his clinic across from the main temple was closed, but was shocked to hear news of his death. Back to the motorbike, and I accepted the ride from the tourist. I was a fully ordained monk at the time, but knew that not only do some monks in various traditions hitch rides on both motor and pedal bikes, some Tibetan Buddhist monks even have their own bikes in South India as the monastic college campuses are very far from each other. Of course, as soon as we began to ride off, Samdhong Rinpoche appeared from a stairwell behind a wall and was walking into out path. I had the tourist stop the bike and got off and stood with torso slightly bowed out of respect. I am not sure if this even registered with Rinpoche, but it was a funny and awkward moment, indeed! Rinpoche was not an informant for my study, so I refer to him rather as an expert and present here what he had to say about Buddhist death meditation when speaking to American HCPs:

From the Buddhist viewpoint, after the transition of consciousness may happen immediately or may not happen immediately, and before the transition of consciousness, cremation of the body or burying of the body is not good for the dead or dying person. This is now a common knowledge to many people, given the many centuries that Buddhists have had the concept of death meditation, death samādhi, the mind remains in the body for many days although clinically completely dead. No breath, no heartbeat, no brainwaves. The Mind and Life Institute people are now experimenting with those kinds of death samādhi and they have many instruments lying in the Delhi hospital; they go around when some important Lama passes away, and when he remains in the death samādhi, then they put on the instruments…this is now scientifically undeniable. As long as the person is in death meditation, the body remains in death, but the mind is functioning, like a live person. My teacher, Kyabjey Ling Rinpoche448, passed away in Dharamshala, and he remained in that death samādhi for thirteen days. I was able to see him in that body on the eleventh day. He passed away eleven days before, and when I came to see his body it was just like he was alive. Practically clear face, only that there was no breathing, no heartbeat,

448 Senior Tutor of H. H. the 14th Dalai Lama.

170

but otherwise it was a completely living body. After that, only a year ago, one of my senior colleagues from my monastery remained in the death-time meditation for twenty-one days. And during those twenty-one days, from Hubli and from Mysore, many medical doctors came and examined his body and declared him dead; he was declared dead twenty-one days ago, but he remained for twenty-one days in death samādhi. So there is something which, should I say, which gives up the physical body on its own will.449

Noteworthy is the direct terminological parallel between the Buddhist death samādhi as mentioned by Samdhong Rinpoche, and one of the three names for Jain sallekhanā, samādhi - marana. Both traditions share the meaning of meditating until the moment of death when the consciousness for Buddhists, or soul for Jains, leaves the body. Distinct, however, is the lingering of the consciousness in the body as Jains generally have consensus on instantaneous transmigration at the moment of clinical death and not much discussion as to the time of departure being volitional.

I interviewed Dr. Chok Tenzin Monlam Peltsok, Head of Research and Translation at the

LTWA in Dharamsala, in his office. The grounds of the LTWA feel like home to me since I studied Buddhist philosophy and Tibetan language at this campus for two academic seasons.

Indeed, studying here was a dream come true to finally have the opportunity to study in a traditional context after hoping for it for ten years, seven of those in a Toronto community in which chances to study outside of the temple’s own limited curriculum were restricted. The smell of incense, the sound of bells from the Nechung monastery below - home to the primary oracle for H.H. the Dalai Lama and the Tibetan government-in-exile - and the shuffling of locals as they circumambulate the library (full of holy images and texts), all make my heart sing in a way that is hard to describe. We had to break mid-interview for lunch, and re-start afterwards, but Peltsok had this to say to me about death:

When the mind leaves the body, at that very moment it’s called “death”, but it’s not clinical death. Clinical death is different, clinical death is when the heart stops beating. In

449 Samdhong Rinpoche 2014

171

the Tibetan system that is not death, he or she is in the process of dying, so it’s not really death. And we have tukdam, you know, which is basically like meditation. They are clinically dead but they are actually in the process of dying…it is not yet death. Death is the consciousness leaving from the body.450

Peltsok here gives us the commonly held Tibetan Buddhist distinction between clinical death and actual death.

I also had the fortune to spend most of an afternoon with Dr. Y.K. Dhondue, Junior

Assistant to the personal Tibetan traditional medicine physician to H.H. the Dalai Lama. We met outside on a blistering day on the beautiful grounds of Chonor House, just up from the main temple and the residence of H.H. the Dalai Lama. It is an exceptional guest house, commensurately expensive, and is connected to the Norbulingka Institute451 which trains Tibetan artists and sells their wares to fundraise for their programs. After our interview, the wife and young child of Dr. Dhondue showed up and we shared a delicious meal together as we got to now each other a bit better. During the interview we discussed the possibility of my translating one of his books on religion and medicine, which he gave to me and which I am still keen to engage with, but I have yet to follow up on this. Dr. Dhondue told me a lengthy story about both tukdam and the incredible post-mortem powers of the remains of one of his masters and some others:

When I was quite young, at the age of thirteen, I learned in the monastery. There was a great Lama, his name was Yeshe Tsultrim, he was a Geshe452 and a great master… Then later, in 1959 Tibet was occupied by China and then many people came into exile with His Holiness the Dalai Lama and after, my master also came to his village, then he lived and stayed in the Yangdro area with his family. Then there was the cultural revolution, 1966-76, for ten years it was a very bad situation in Tibet. At that time his Buddhist practice externally was layperson-like, in his practice he was a fully perfect Gelong453.

450 DSL-032615-B-035 451 Named after the summer palace of the Dalai Lamas in Lhasa, Tibet. 452 Tibetan Wylie: dge bshes, translated as “virtuous teacher, spiritual benefactor/friend (Waldo 2011).” This is a shortened version of dge ba'i bshes gnyen. Formally, this is an academic title granted after achieving one among several levels of the highest degree in Tibetan Buddhist philosophy, often equated with a doctorate but taking at least ten, sometimes up to twenty (or more), years to complete. 453 Tibetan Wylie: dge slong. Meaning fully ordained monk, but literally “virtue-beggar.”

172

Then in 1980 Chinese policy changed a little bit and then he set up a monastery. The ancient monastery had been completely destroyed (it was one of the Karmapa’s monasteries). Before 1966-76 there were mardung454 statues after tukdam, the body was not burnt. In His Holiness the Dalai Lama’s temple there is a Ling Rinpoche mardung, and also in South India there is mardung for the hundredth Ganden Tripa455 Lobsang Nyima. Then when Trijang Rinpoche456 passed away in his monastery in Nepal, there was also a mardung statue. Many Tibetans, in my native country, explain that that mardung was one of the Karmapa’s and very precious. But during the cultural revolution all monasteries were destroyed, and then the mardung were also destroyed. But when I was in the monastery, sometimes we were invited to practice and to pray and sometimes have tsok457 in the village. There was a big and ancient family. In their house was mardung meat, Lama’s dried meat. Then sometimes when we had some communicable diseases. This mardung would be put in water, and with this medicine liquid, if we drank it then we would never get colds. Very, very precious. But nowadays there is only a little part of mardung left, as most were completely destroyed. My master was a great practicitioner of Lam Rim458. When I was quite young I received many teachings from the Lam Rim… But at that time we were quite young so we didn’t pay much attention, but later we grew and many years later, now, these days I feel that he was a real Lam Rim great master, great compassionate person, Lama. After he passed away, he also was in tukdam meditation for some ten days, and later also his body… At Sera459 monastery there was a Geshe Lama who came from Lhasa to Yangdok and he said rituals also for the burning of his body had great significance. Because after burning his whole body, his forehead was not burnt by the fire. Then also there is a great mantra written, like carved on wood, “Om460 Om” like this on his skull, naturally full of the mantra. And also, after burning his body there were a lot of ashes, then people got many ringsel461, in great

454 Tibetan Wylie: dmar gdung. This term refers to flesh relics of masters. On their own, the words that make this term up are “reddish, fresh, raw,…bloody; fresh (Yeshe 2011)” for dmar, and “remains of a dead person…body, [indestructible] relic (Yeshe 2011)” for gdung. Thanks to Khenpo Kunga Sherab, my Tibetan language instructor at University of Toronto, fellow Buddhist prison chaplain and a dear friend, for help with the spelling of this term. 455 Gelug lineage head, throne-holder of the seat of the founder, fourteenth century scholar-monk Lama Tsong Khapa Lobsang Drakpa. 456 His Holiness the Dalai Lama’s Junior Tutor 457 Tibetan Wylie: tsogs. Here meaning “tantric offering feast (Valby 2011),” but also translates as “accumulation / community … / collection / gathering… assembly…a collection of merit…collective offering (Yeshe 2011).” 458 Tibetan Wylie: lam rim. Translates as “stages of the path, gradual path (Waldo/Yeshe 2011)” but sometimes referred to as the “Graduated Path to Enlightenment.” This is a genre of distilled teachings founded by the Indian scholar-monk Atisa for the Tibetan people, elaborated upon by the Kadampa masters of Tibet and further codified and reinvigorated by Lama Tsong Khapa. 459 One of the three major Gelug monasteries: Drepung, Ganden and Sera. 460 Williams explains the Sanskrit syllable as “a word of solemn affirmation and respectful assent, sometimes translated by ‘yes, verily, so be it’ (and in this sense compared with Amen; it is placed at the commencement of most Hindu works, and as a sacred exclamation may be uttered [but not so as to be heard by ears profane] at the beginning and end of a reading of the veda-s or previously to any prayer; it is also regarded as a particle of auspicious salutation [Hail!]; om- appears first in the upaniṣad-s as a mystic monosyllable, and is there set forth as the object of profound religious meditation, the highest spiritual efficacy being attributed not only to the whole word but also to the three sounds a-, u-, m-, of which it consists (Williams 2008: 235).” 461 Tibetan Wylie: ring brsel. These are “small very hard glittering particles found in body's burnt ashes (Valby 2011),” or a “tiny pill-sized white and breakable relic (Yeshe 2011).” Such relics sometimes appear in the cremation ashes of masters, and are said to sometimes multiply over time.

173

quantity, not small tsampas462. This ringsel I saw in 2007 after I completed my course and I went to Tibet. Then some of my friends in the monastery took me and showed me real ringsel. Blue in colour, like small pieces, grounded like we have with a Tibetan Buddhism chungnga463 pills. Like this. Same size, not too big not too small, colour is all the same. Then they went during the burning of his body and they got a bunch of ash from which they got many ringsel. They kept them in pieces of small paper/cotton, clean, rolled up then kept them, and then after some months the relics multiplied. This is a true, real experience. They showed me.464

Dr. Dhondue not only dicussed the tukdam of great masters itself, typically measured in number of days or weeks spent in the samādhi state, but of the auspicious qualities of their post-mortem condition: mummified bodies of such practitioners being placed inside statues called mardung, the “meat” of such being used for healing, mantras appearing on bones after cremation, and relic spheres not only appearing from cremated remains but multiplying over time.

Buddhist Discipline Texts on the Distinction Between Active Killing versus Withdrawal of Medical Treatment

Buddhist texts generally eschew the killing of others by followers, as well as any indirect encouragement or direct incitement to die, but self-killing is treated differently and will be covered in the MAiD section. Since the version of the Vinaya monastic discipline code followed by Tibetans, the Mulasarvastivada, is not fully translated and “of the Indic recensions, only one -

462 Tibetan Wylie: rtsam pa. This is “roasted barley flour, parched barley ground into meal, staple food of rural [T]ibetans (Valby 2011).” In this context, the informant is comparing ringsel relic spheres with tsampa balls, called “pa,” which is tsampa mixed with tea and butter and rolled into spheres the size of table tennis balls. These pa are often ritually blessed when used in ceremonies and are much sought after at long-life ceremonies. 463 Tibetan Wylie: ‘byung lnga. Translates as “the five elements (Valby 2011).” Here, the informant seems to be comparing relic spheres with a type of medicinal pill used in Tibetan medicine (Sowa Rigpa, Wylie: gso ba rig pa). I have not been able to locate what types of pills these are but in discussing various potencies in Tibetan medicinal pills, in addition to three major types of potencies - substance, mantra and auspiciousness (having to do with the time when they are produced) - Gerke states that “[t]here are also distinctions made between the “taste potency,” nüpa ro (nus pa ro), which is based on different combinations of the five elements, jungwa nga (’byung ba lnga), water, fire, earth, wind, and space, and the “intrinsic potency,” nüpa ngowo (nus pa ngo bo), which is based on the nature of the actual substances, dzé (rdzas) (Gerke 2017: 208).” So, “chungnga” is used to refer to the way in which the elements affect the taste potency of pills, but chungnga pills may simply be pills comprised of all five elements. 464 DSL-041115 B-043

174 the Pali - is still a living tradition”,465 I will be using translations and commentaries from the Pali

Vinaya. Thanissaro Bhikkhu’s publications in particular were very useful for me after I became fully ordained since in the Tibetan monastic college syllabi, the vows are usually taught only as the final subject after years of study. Because this subject order could potentially leave some monastics unclear on their vows, I also sought private discipline instructions from Geshe Dawa

Sonam Sengye, former philosophy teacher at the LTWA and Abbot of the personal monastery of

H.H. the Dalai Lama. Although listed third among the parajikas466, or vows that “defeat” a monastic by severing their connection with both the order and ordination, the vow against killing a human is actually considered to be the most important vow for both monastics and laypeople:

Should any bhikkhu intentionally deprive a human being of life, or search for an assassin for him, or praise the advantages of death, or incite him to die (saying): “My good man, what use is this evil, miserable life to you? Death would be better for you than life,” or with such an idea in mind, such a purpose in mind, should in various ways praise the advantages of death or incite him to die, he also is defeated and no longer in affiliation.467

We can see here that this vow includes recruiting someone to kill another, praising death and inciting to die but the vow is technically breached only if the person actually dies as a result.

I spoke of some of my difficulties with Keown in the introductory chapter End-of-life

Decision-making of Select South Asian Religious Adherents through Ethnography, Clinical

Ethics, and Legal/Textual Analyses, particularly on the fact that his views are entirely based on certain texts and that they are free from clinical experience despite his surmising of clinical implications. I contest another of his positions in which

Keown (2001) argues that tube feeding is not necessarily a medical treatment but is a human need and that it does meet one goal of medical care, that of keeping the person alive. He views withdrawal of the tube feeding as an active step with intention toward ending the life of the person, and the withholding of tube feeding as an omission of care

465 Thanissaro Bhikkhu 2013a: 27 466 The four monastic “defeats” are sexual intercourse, killing a human, stealing something prosecutable in the local jurisdiction, and telling a big lie of having spiritual attainments that one does not have. 467 Bhikkhu, Thanissaro 2013a: 74-75

175

that would otherwise continue the life. He says both withdrawal and withholding tube feeding would be prohibited by the precept against taking life.468

He is not the only one to see artificial feeding as a fundamental form of care rather than a medical treatment, and I disagree. One hint that it is definitely a medical intervention is that natural feeding does not require a consent process (nor does changing a diet to suit a diagnosis such as ), whereas artificial feeding absolutely requires informed consent. Keown’s stance, to start with, assumes the intention to end life, when, rather, the RDE could well apply here (death foreseen but unintended). Further, since Keown uses Pali texts as the bases for his positions, I will use the Pali Vinaya to counter his argument on omission being equivalent with killing.

The “Sutta Vibhanga, the ‘Exposition of the Text’” is one of two parts of the Vinaya

“containing almost all the material dealing with the Pratimokkha rules,”469 precepts of conduct for both monastics and laypeople. As such, “[t]he Vibhanga defines taking life as “the cutting off, the ending, of the life faculty; interrupting the continuity.”470 In keeping with the text itself,

Thanissaro Bhikkhu subdivides aspects of rules of conduct fivefold: “intention, perception, object, effort, and result.”471 When discussing “inaction” in the context of killing, he states that

“[g]iven the Vibhanga’s definition of taking life, we can infer that inaction does not fulfill the factor of effort here, for it does not cut off the life faculty.”472 This is a subtle analysis lost on

Keown who not only presumes a particular intention to end life when not starting or when stopping artificial nutrition and hydration, but also presumes that intention is even relevant in any circumstance of omission that ends with death since by any omission “he commits no

468 McCormick 2013: 216 469 Thanissaro Bhikkhu 2013a: 15 470 Thanissaro Bhikkhu 2013a: 78 471 Thanissaro Bhikkhu 2013a: 7 472 Thanissaro Bhikkhu 2013a: 82

176 offense - regardless of his feelings about the person’s death (Ibid.).” Ven. Thanissaro then applies this logic to “Medical care and life-support” and I include most of the text of this section because it is so relevant to the topic:

The same holds true if a bhikkhu decides not to give a patient a treatment - or to discontinue treatment - that might conceivably extend the patient’s life: It does not fulfill the factor of effort, for such acts do not cut off the life faculty. At most they simply allow it to end on its own. The Canon supports this inference by treating such actions not under this rule but under Mv473.VIII.26.3-4474, where it imposes only a dukkata475 on the act of refusing to give any treatment at all to an ill bhikkhu, or of discontinuing all care for an ill bhikkhu prior to his recovery or death. This shows that the compilers of the Canon did not regard these acts as cutting off the life faculty. (…at no point does the Canon impose a required level of care for the sick. The compilers’ refusal to mandate a level of care is wise. If there were a case in which the bhikkhus did not feel that that level of care was appropriate for their patient, they would have only one option: to abandon the patient, so as to incur only a dukkata and not the potentially higher penalty for not measuring up to the mandated care. Thus, instead of protecting the patient, a higher level of mandated care would expose the patient to abandonment.476) For this reason, deciding to withhold or discontinue a particular treatment - while still continuing otherwise to care for the patient - would not be grounds for an offense.477

Despite the prohibitions in the Buddhist monastic code against causing, indirect encouragement or direct incitement to death, and abandonment of sick monastics being a minor offence, withdrawing or withholding certain treatments while continuing to care for a sick monk is not

473 The Mahavagga is one of two sections of the Khandhaka, the second part of the Vinaya (after the Vibhanga) and “includes several sutta-like texts, including an account of the period immediately following the Buddha's Awakening, his first sermons to the group of five monks, and stories of how some of his great disciples joined the and themselves attained Awakening. Also included are the rules for ordination, for reciting the Patimokkha during uposatha [rainy retreat] days, and various procedures that monks are to perform during formal gatherings of the community (Thanissaro Bhikkhu 2013c).” 474 This story is one of my favourites in which the Buddha came upon a sick monk who had been abandoned by the community because he was no longer contributing. The Buddha bathed the monk and admonished the order to take care of one another until cured or reaching death because they have no families to do so. While a young and new monk and caregiver, I found the thought of the Buddha bathing a fellow monk (and the many images of this event) very inspirational. 475 Killing falls under the parajika category of offences which are fewest in number and the most serious as they entail severing of the connection with both the vows of ordination and the order. Dukkatas are at the other end of the spectrum of offences as “slight offences which were not embodied in patimokkha [personal liberation vows]” and “no further penance was required than a simple confession of his fault (Ganguly 2012: 27).” This means that they entail breaches of conduct but not breaches of vows proper, many of which involving unseemly behavior rather than a more gross type of harmfulness. 476 I think the author here actually means that if a higher level of care was mandated it would potentially expose the patient to overly burdensome care exceeding their needs, rather than abandonment. 477 Thanissaro Bhikkhu 2013a: 82-83

177 seen as a fault in conduct. This covers the foregoing of treatment by another in relation to a sick person. What about the person themselves? By the Vinaya, can they stop medical interventions or nutrition and hydration? The “Vinita-vatthu, or Precedents, listing various cases related to the

[major] rule[s] and giving verdicts as to what penalty, if any, they entail”478 is commentary which

extrapolates from…[one] case to apply the dukkata to all attempts at suicide, including even the decision not to take food when motivated by a desire to die. However, it then runs into the question of how far this penalty applies to a bhikkhu who is ill. Its verdict: As long as medicine and attendants are available to him, the penalty would still apply. But then it lists two cases where the penalty would not apply: (a) A bhikkhu is suffering from a long and serious illness, and the attendant bhikkhus are fed up with caring for him, thinking, “When will we be free of this sick one?” If the bhikkhu reflects that, even with medical care, his body won’t last and that the bhikkhus are being put to difficulties, he incurs no penalty in refusing food and medicine. (b) A bhikkhu— reflecting that his illness is harsh, the forces of life are running out, and yet the noble attainments appear to be within his reach—may refuse food and medicine without penalty. The Commentary’s deliberations here show how difficult it is to legislate in this area… Case (b) is apparently derived from SN479 4.23, where Ven. Godhika takes his life and gains arahantship just moments before death; and from SN 35.87, where the Buddha says that one who puts down this body without taking up another body480 dies blamelessly. However, in arriving at its verdict in this case, the Commentary has to add the factors of motivation and perception to the equation, factors that are absent from the rule on which the judgment is based. It also leaves unanswered the question of how harsh the disease has to be, and how near the anticipated attainments, to qualify for this exemption. This same holds true for case (a), which entails even more dubious reasoning. The Commentary’s judgment here has no clear precedent in the Canon; there is no clear line for deciding exactly how bad the illness and how fed up the attendants have to be for this case to apply; and why should the feelings of other people determine when it is or is not allowable to refuse food?481

I have the same question as the commentator since, in clinical practice, we typically get worried when a patient is making decisions based on what they perceive as the feelings or experience of their loved-ones out of concern for being a burden. That said, the capable person is

478 Thanissaro Bhikkhu 2013a: 16 479 “The Samyutta Nikaya, the third division of the Sutta Pitaka, contains 2,889 suttas grouped into five sections (vaggas). Each vagga is further divided into samyuttas, each of which in turn contains a group of suttas on related topics. The samyuttas are named according to the topics of the suttas they contain (Thanissaro Bhikkhu 2013d).” 480 Meaning that they have reached a state of attainment which has cut off any future rebirths for them. 481 Thanissaro Bhikkhu 2013a: 85-86

178 perfectly permitted to use any sound logic when choosing to forego treatment, even if it is unpalatable to HCPs and teams. Oppositely, a person might choose to continue aggressive medical management based entirely on a loved-one not wanting them to die. In both cases it is hard to argue against concern for loved-ones being the main metric for medical decision-making, despite our attempts to encourage people to focus on their own best interests. If concerns regarding loved-ones are the most crucial to a person, who is anyone to say that it should not be?

The above exemptions from penalty for VSED focus on either the illness length and seriousness and commensurate implications for care by others, or severe illness and imminent death in the person close to arhatship, but show its permissibility under narrow circumstances.

Of course, the Vinaya material used has had to do specifically with monastics. If we see this as the most strict approach to ethics in Buddhist thought and practice, it would apply to laypeople as well but perhaps with more flexibility. Laypeople who hold precepts would have a similar vow to abstain from killing, but the karmic outcome of a breach is understood to be less intense for laypeople. In the context of tukdam, I would say that most occurrences involve monastics.

However, although I do not yet have data to support laypeople entering into this state, since there are so many lay teachers who are considered to be highly realized (if not enlightened) in Tibetan

Buddhism, it is likely that there are cases of householder tukdam. A more subtle approach to this issue would be that although a layperson, a realized being past the path of seeing482 would be within the category of “Ārya483 Sangha484.” “Ārya” literally means “superior being” and its

Buddhist usage is reserved for those who have such wisdom, and “sangha” in general means

482 Wisdom understanding the nature of reality directly (nonconceptually) and without regression. 483 Sanskrit for “honourable, respectable, noble” but also, in a Buddhist context, “a man who has thought on the four chief truths of Buddhism (See next column) and lives accordingly (Williams 2008: 152).” 484 IAST: saṁgha. Sanskrit for “‘close contact or combination’, any collection or assemblage, any number of people living together for a certain purpose, a society, association, company, community, a clerical community, congregation, church, (especially) the whole community or collective body or brotherhood of monks (with Buddhists; also applied to a monkish fraternity or sect among jaina-s) (Williams 2008: 1129).”

179

“community” but is typically used to refer to the order(s) of monastics. It is taught that Āryas would naturally act in accordance with the ordination vows even if not having them formally, since on the basis of their realizations are no longer harmful, and thus at that level the neat categories of “monastic” and “householder” collapse.

Wilfully and meditatively entering into the process of dying, as an internal process and not by active external means but including some passive external changes shifts such as VSED and immobilization, is also generally not seen as a breach in discipline. Willful death is not only recognized and lacking in prohibition, but is an esteemed mode of exit. There is some distinction made as to the transmigratory outcomes of various types of meditative states: “As a result of attaining high degrees of refinement of meditation in one’s life, a practitioner of śamatha or

“tranquility” meditation may be reborn after death in the realm equivalent to that meditative state.”485 Some Buddhist sources also say that to die while engaged in certain types of absorption will lead to a rebirth in a formless realm of pure consciousness. In the tantric traditions, however, to be reborn in such a realm is not an ideal outcome of death meditation as the life-span in such realms is extremely lengthy and during which, the conditions motivating one to practice and the amount of benefit one can be to others are both very limited. As such, the goal of tukdam is rather to become enlightened or at least access the true nature of mind since the process of death is seen as an ideal period to do so since the gross levels of consciousness fall away. Unlike the

Southern Schools views as seen in Pali texts, which have a soteriological focus on exiting cyclic existence, achieving such high or ultimate realizations would not preclude returning in a human form from the perspective of the Northern Schools as seen in Sanskrit and Tibetan texts in which the bodhisattva compassionately delays one’s own full enlightenment until all other beings are liberated.

485 Sarbacker 2005: 57

180

Part 3 Comparing sallekhanā and tukdam as social phenomena

Next will be a comparison of the hotly contested practice of Jain sallekhanā with

Buddhist tukdam, a Buddhist final meditation practice that is somehow free from controversy in

India despite being quite analogous in that it also includes fasting and immobilization. As we have seen, tukdam is renowned due to cases of meditators who enter clinical death with the cessation of vital signs but remain free from typical post-mortem states such as rigor and decay for various lengths of time. For our purposes, though, what is crucial is that the meditation practice begins before clinical death with an end to all bodily activity. Noteworthy also is that in both practices there are internal austerities as well, such as curtailing negative emotions by various means. I ask: why between sallekhanā and tukdam is it that the Jain practice is targeted for criticism and not the Buddhist, given that the two ritual practices share the essential similarity of stopping eating and drinking and any other bodily activity? Is it discrimination against a particular indigenous minority religion, while the re-imported minority religion practiced by

Tibetan refugees is sacrosanct? Is it because sallekhanā is a fairly public affair whereas tukdam is kept relatively private? Or is it because Jains imply a causal link by referring to their final practice as a “fast unto death,” have normative instructions for VSED and announce their intention to stop eating and drinking altogether, as opposed to the Buddhists who have no equivalent terminology or VSED instructions and may not even make it known in advance that a particular meditation session is their last?

Measurability of Unusual Physical Signs

Both practices are seen as remarkable in their respective traditions, for the rigors in each are seen as a demonstration of the exceptional qualities of such practitioners and insiders revere

181 them. Although there is not perfect agreement on what the outcomes of such practices will be, followers are convinced at least that there will be soteriological advancement. In Tibetan

Buddhism, however, tukdam is unique in that the absorption produces an observable and measurable state that seems to contradict both common experience and scientific understandings of death. and decay are meant to happen after vital signs become absent, and yet they do not in some who enter tukdam. Even without any other signs during post-mortem rites and body disposal, such as rainbows and relics appearing from remains, abiding in tukdam itself is seen as proof of both high realizations and a good post-mortem outcome for the consciousness.

The only corollary exemplary physical sign of attainments in Jain sallekhanā might be radiance, translated as “lustre” in the Bhagavatī Ārādhanā, “spiritual glow or tint” by Upadhye,486 but often translated as “substance.” I have been captivated by this concept since coming across it in a list of sallekhanā stages in the Bhagavatī Ārādhanā during the research trip in 2010. Lustre appears as the second last of about forty sallekhanā stages, the last being death. Śreyas describes it here:

38. Leśyā487 (Auriation) – In the present context Leśyā means spiritual glow or colour of the spirit. The spirit or soul, in its natural form, is absolutely pure and free from any colouration. However, when it is influenced by passions it assumes a certain hue that depends on the type and intensity of passions colouring it at any point of time… The leśyās are six (A… Maraṇakaṇḍikā,488 verse 1989, B… Bhagavatī Ārādhanā, verse 1900) – [from] 1. Black (Kṛṣṇaleśyā)489 that signifies most intense passionate state of the soul,… [up to] 6. White (Śuklaleśyā),490 which is the passion-free state of the soul. These spiritual hues reflect the psychic tendencies or propensities of people…the one in the white or the colourless spiritual state is the best aspirant…by doing so he becomes free from all

486 Upadhye 1943 487 Sanskrit for “light (Williams 2008: 903).” 488 Sanskrit for “a short section on death” from kaṇḍikā “a short section (Williams 2008: 246)” and maraṇa “death (Williams 2008: 789).” 489 Kṛṣṇa is Sanskrit for “black, dark, dark-blue (Williams 2008: 306).” Kṛṣṇaleśyā would then be “dark light.” Kṛṣṇa is of course also the name of an avatāra, or divine earthly incarnation, of Viṣṇu (one of the three major classical Hindu gods) and is dark blue in colour. 490 Śukla is Sanskrit for “white (Williams 2008: 1080).” Śuklaleśyā would then be “white light.”

182

encumbrances and attains purity of spiritual hues possible for the enlightened souls (Bhagavatī Ārādhanā, verse 1904).491

It is still unclear to me if anyone can perceive such a glow or if it is reserved for people beyond a certain level of development with some form of enhanced spiritual vision. I have yet to find any scientific studies on tukdam of the kind mentioned by Samdhong Rinpoche, and although only having anecdotal evidence, there are very many accounts with much corroboration. Ordinary people are also able to perceive the unusual tukdam state.

Although a study comparing Tibetan Buddhist and Hindu Vedic meditation techniques and their effects on cognition, its finding that “different techniques produce different effects”492 could well apply to the techniques and results of sallekhanā and tukdam being different as well.

This despite the fact that the study also concludes that there are shared beneficial outcomes between the respective techniques:

Long-term practice of traditional South Asian meditation techniques, be they of Buddhist or Vedic origin, result in changes in cognitive style consistent with the development of a more balanced and stable mode of awareness, characterized by increased wakefulness, and simultaneous sensitivity to outer stimuli and inner patterns of cognitive and mental

processing. Such changes are consistent with improved mental health. Measures of brain function indicate increased brain activation, particularly in the frontal cortex, and increased available brain processing power.493

Since sallekhanā and tukdam internally are quite different in many ways, such as the types of contemplations involved, what is shared might be said to be that the practitioner can enter the death state with the enhanced mental calmness that is seen as helpful during the three phases of pre-mortem, mortem and post-mortem. Regardless, there might be a difference in the measureable bodily effects of each practice which could well skew public opinion. As much

491 Śreyas 2007: 158-159 492 Hankey 2006: 519 493 Hankey 2006: 520

183

Box #5 media attention as both practices receive, I have Santhara ruling: Woman dies after week- long fast, Jain leaders cry foul yet to come across mentions of radiance with Milind Ghatwai The Indian Express. August 13, 2015 Jains who undertake sallekhanā unlike the

A 96-year-old Jain woman, who had stopped requisite mention of vital-signs absent (VSA) taking food for more than a week, died in Guna on Tuesday, a day after the Rajasthan High Buddhists looking alive when undertaking Court declared the ritual of Santhara or Sallekhana — the Jain practice of fast unto death — illegal. While the woman’s family has tukdam. The focus seems to be on the pre-mortem refused to link the death with Sallekhana, a section of the community has tried to project it state for Jains, and the post-mortem state for that way. A person undertaking Santhara or Sallekhana does not eat or drink anything and Buddhists. as a result starves to death within a few days. The ritual is marked by great social and religious fervour. Permission and Publicity

Nonagenarian Shrimati Bai Jain was the One of the major differences between Jain mother of Anil Jain, a merchant who is also the head of Jain Samaj in Guna, about 180 km from Bhopal. She was ailing for some time and sallekhanā and Buddhist tukdam would be that the died soon after noon on Tuesday at Sant Niwas in Chaudhary Mohalla, where Aarika latter lacks the permission granting aspect. Jain Anantmati Mataji, a religious figure, had been staying for the last few days. “We celebrated householders need permission from their family her death but it was not Sallekhana, as some overzealous people are calling it. She lived a and a religious leader, monastics need permission full life and did not have food after August 2,” Anil Jain told The Indian Express. Saints who from their preceptor and candidacy eligibility and undertake Sallekhana are cremated in a private land after performing special rituals. The permission processes can sometimes involve nonagenarian’s last rites were performed in a government . More than 1000 people, including women and children, several monastics. There is also typically publicity attended the . with sallekhanā, such that even local non-Jains become aware of the practice being performed. One news-media example speaks of a Jain family announcing the sallekhanā of a loved-one in advance, but then retracting after the ban for fear of reprisals.494 Several components of this story are noteworthy. The mention of “great “great social and religious fervor” speaks to the public nature of the rite, as does the enormous crowd for the

494 Ghatwai 2015. See inset box #5 for full article.

184

Box #5a funeral. That the family framed the woman’s end of (Ghatwai 2015 article continued) life differently when there was fear of repercussions On Monday, the Rajasthan High Court had declared the practice of Santhara or speaks to our next theme of terminology: calling it Sallekhana illegal, drawing strong reactions from religious heads of the community. The sallekhanā can bring unwanted legal attention. verdict has been widely condemned by the community in Madhya Pradesh, which has Even limited Jain fasts are publicly announced called it an infringement on religious beliefs. A community leader claimed that the family 495 of the old woman was apprehensive after the and celebrated. For this unfortunate minor, what verdict, even though it does not apply to Madhya Pradesh. Days before the verdict, he was intended to be a limited fast actually ended in said, the family had announced that she was undertaking Sallekhana and had been visited death. I will not explore the complex areas of the by several people. religious rights of minors or consent and substitute

decision-making for minors as they are both fraught and on a different tangent, but noteworthy

that the fast was made very public.

By contrast, not only is there no publicity for tukdam, there usually is also no notice at

all. Although in many cases disciples of Tibetan Buddhist masters might expect their teacher to

have an exemplary death, there seems to be a lack of formal decision-making on the part of the

practitioner such as the permission seeking from a senior teacher. Clairvoyance aside, masters or

disciples who would enter into death meditation might not know that this was to occur with one

or the other until their vital signs are absent and they remain in meditative equipoise.

Historically, and in various Buddhist traditions including Ch’an/Zen, some teachers have entered

into death-samādhi in the middle of giving a discourse.496 As well, tukdam is kept relatively

private even within Buddhist circles. Close disciples might be granted access to be in the

presence of a master in tukdam. Near the end of Bernardo Bertolucci’s 1993 film “Little

Buddha,” which coincidentally came out very close to the time when I first ordained, there is a

495 Khaleej Times 2016. See inset box #6 for full article. 496 See this excellent work for such stories: Blackman, Sushila. Graceful Exits: How Great Beings Die (Death stories of Hindu, Tibetan Buddhist, and Zen masters). Shambhala Publications, 2005.

185

Box #6 scene of a Tibetan Lama in a Bhutanese monastery Death of minor girl after 68-day fast sparks outcry entering into a final meditation. The Lama does not Khaleej Times 10 Oct 2016 Reuters make anyone aware that this is to be his exit, and he New Delhi - A children’s rights group has called for Indian police to arrest the parents sits alone in yogic posture before a shrine and closes of a 13-yearold girl from the minority Jain community who died after observing a each nostril one at a time with a deep breath. The religious fast for 68 days.

The girl, Aradhana Samdhariya, died due to floor is covered with red peppers and this remains a on October 3, a day after her family held a procession in the southern city mystery to me other than the possibility that this is of Hyderabad in which she rode in a chariot with her parents to celebrate the end of her done to prevent people from disturbing the fast. meditation. At one point another monk drapes him The tragedy exploded into the national headlines at the weekend, and raised new with a warm outer-robe. In an adjoining room another questions about whether India’s tradition of religious tolerance is failing to protect the monk (who happens in real life to be a high Lama, most vulnerable.

The girl’s parents likely coerced the girl to and there actually were several in the cast) explains to participate in the ritual of surviving only on water, for a second straight year, the child a Westerner that the death meditation might last for a rights body said in its complaint. long time, alluding to tukdam. Next to the Lama there

are a few monks, likely close disciples, saying prayers until his head slumps and one monk

checks with a hand under his nose for respirations, and pays reverence when he finds none.497

The similarities to tukdam end here since VSA seems to indicate the entrance into death in the

movie, rather than the beginning of tukdam. A representation of a death meditation with VSED

and immobilization, to be sure, that was unannounced and also very private. Tukdam visitation

would likely be restricted, as with hospital visitation and especially open grieving, because there

is always a major concern with disturbing the dying and transmigration process even in the

context of regular Buddhist deaths.

497 Bertolucci 1993

186

Box #6a This is not to say that sallekhanā is a free- (Khaleej Times article continued) for-all for visitors. I have seen footage of visitation “It is a planned, cruel . We have complained to the police to arrest the parents during sallekhanā where it seems allowable for lay and the priest,” P Achyuta Rao, honorary president of Balala Hakkula Sangham, an and monastic devotees to pay their respects, usually Andhra Pradesh-based children’s rights group, said on Sunday. with some gendered distance, but it also seemed

Hyderabad police have registered a so-called First Information Report that marks the initial strictly controlled. Some sources, such as one by step in an investigation, and summoned Aradhana’s father and grandfather for Jain nun Ganini Jnanamati with whom we had the questioning on Saturday. privilege of spending time with during the ISJS “We are booking the case. The investigation shall go on,” said the officer handling the case summer research trip in 2010, make note of the role who spoke on condition of anonymity. The relatives, who were not represented by a of niryakapas as being stationed at the door to ward lawyer, said in their questioning that Aradhana had wanted to continue her fast for the full 68- off those with wrong views in order to protect the day period. 498 “In fact, in the meantime, they objected also mind of the practitioner. It might be said that but she didn’t listen to them and she was very much interested to continue for 68 days, is such meditative deaths are celebrated in Buddhism, what they are saying,” the officer said. Family members have publicly denied forcing but it is solemn and unlike some of the lively post- the girl to fast during the holy period of Chaumasa, observed by the Jain community mortem celebrations after Jain sallekhanā that the from July. About a fifth of India’s 1.27 billion people identify themselves as belonging to article spoke of and of which I have seen footage. faiths other than Hinduism.

“We did not hide anything. Everyone knew The differences in mood in post-mortem rituals Aradhana was fasting. They came and took selfies with her. Now some people are pointing might also be culturally based. Although Tibetans fingers at us for allowing her to fast for 68 days,” her grandfather, Manekchand trace their spiritual lineage (and written script) back Samdhariya, told news channel NDTV. Jainism is an ancient religion whose central tenets are to India, the form that Buddhism took in Tibet is non-violence and love to all beings. Jains, who make up around 0.4 per cent of the population, quite unique and one that absorbed some aspects typically observe a strict vegetarian diet. from the indigenous Bön religion. Tukdam certainly

498 Jnanamati 2007

187 becomes incorporated into religious biographies, or namtar,499 so it does naturally increase the reputation of the deceased but name and fame are normatively not to be motivations of the practitioner, just as with Jain sallekhanā. Ironically, unworldliness commensurately yields spiritual reputation. This is not to say that some disciples and/or family members of Buddhist sages do not crave such worldly things, as with some Jain householders, since religiosity does not always match the normative doctrine in any religious tradition. Even some Buddhist masters have been accused of inappropriately seeking reputation, such as one Thai Ācārya.500 A picture in an article on this case501 shows monastic and lay devotees placing a lid on the well-crafted wooden coffin with a rounded rectangular air-hole about a hand-span in length and an inch in height. As shown in this report but remembering this anecdote is from a Theravada or Southern

School of the Thai Buddhist tradition (Tibetan Buddhism being a Bodhisattva or Northern

School), announcing a final meditation (and with some surrounding circumstance) in advance is seen by some in the tradition as self-aggrandizing. This example is an outlier in Buddhist monasticism, to be sure. Also, to be fair, it is very possible that the monk’s motivation was pure and not out of egotism. We can’t know. Even the Buddha announced His death in advance, first to give disciples a chance to ask Him to remain but then as a way to prepare them and as a teaching in impermanence that even enlightened beings leave off the body.

Terminology and Being an Indigenous Minority Religious Tradition

Another major difference, and perhaps key to uncovering why Jains seem to be persecuted for their death meditation and Buddhists are not, is that even though eating and drinking and motion cease with tukdam it is not labelled as a “fast unto death” thus not

499 Wylie: rnam-thar 500 “Ācārya” here means a senior monastic fully ordained for at least ten years. 501 Thornhill 2014. See inset box #7 for full article.

188

Box #7 seemingly linking the practice and death Buddhist monk enters trance in bid to 'meditate himself to death'… and tells causatively. A death meditation that is not followers he will spontaneously combust on Thursday tukdam, meditating into the death state and Ted Thornhill Mail Online 10 September 2014 ceasing with VSA, are labeled retroactively

A Buddhist monk who said it's time for him to and episodes of tukdam are labeled after die has decided to lay in a coffin and 'meditate himself to death'. The Thai holyman told his followers that if he did indeed pass away, the clinical death. As with the family of the minor coffin would self-combust on Thursday. The monk, Phra Khru Weruwan Chantarungsi, 65, who died after a lengthy but limited fast, there who is also known as Luang Pu Pim, is the abbot of Wat Weruwan temple in Tambon Thung Phra are reports that they initially called her fast in Thailand - and is in good health, according to temple representatives. sallekhanā (which would make the case even

However, his daughter, 41-year-old Chanakarn more worrisome as I cannot fathom how this Srisombat, insisted that he was poorly, according to the Bangkok Post. child would qualify by Jain standards to

She added that he'd died once before in a cave but that a had brought him back to life. engage in an unlimited fast) but then changed Mr Pim's coffin was placed outside his living quarters on Tuesday after he'd delivered his last their tune with the threat of presumed legal sermon, in which he explained that death something that comes to everyone. Detractors of action based on the ban in a different state. If Mr Pim's actions say that he's being anti- Buddhist, by 'showing off'. However, his this is in fact what happened, it would followers strongly refute that he's seeking attention. Many of them have stayed at the demonstrate the power of such a signifier to temple to witness the coffin being consumed by fire. The coffin has several holes in it, to allow Mr Pim to breathe… draw negative attention which, in this case, would have been warranted and might have saved the child’s life if acted upon earlier rather than with a post-mortem inquiry.

One last thought, and perhaps an uncomfortable one, comes from the fact that Jainism is an indigenous minority religious tradition and Tibetan Buddhism a re-import of what was an indigenous religion but which became a minority from its decline starting in the late classical and into the medieval Indian eras. Non-Indian Buddhist pilgrims come to India from all over the

189 world, and there is much mutual admiration between the Tibetans and the Indian people who have hosted more than one hundred and fifty thousand Tibetan refugees starting in 1950. H.H. the Dalai Lama appears regularly in Indian dailies, and India does not relent to China when they complain of India’s support of him even when he travels to contested areas, as he did recently in

Arunachal Pradesh where troops have been mounting on both militarized sides and where there were previous battles ending in 1962. The Tibetans are seen as a vulnerable group to be protected, and are lauded by the Indian people.

Jains, however, are disproportionately wealthy for their small numbers. They joke even among themselves as being the “Jews of India.” The added hint of persecution that goes with this joke is not lost on me. Sankritist Dundas gives some insight by suggesting the causes of such success and connecting wealth with a historical pursuit of prestige among Jains:

It has often been suggested that the reason the tiny Jain community wielded and continues to wield so much economic power in India is that the religion it follows, rather like Protestant Christianity, naturally inculcates principles of self-reliance and responsibility which create an appropriate environment for commercial activity… One of the main concerns of Indian merchants, Jain and Hindu alike, in the early modern period was the gaining of…‘prestige’ or ‘reputation…pratiṣṭhā502…503 in part coming from “[o]utward piety and restraint, a propensity towards religious giving in the form of building hospitals, temples and educational establishments.”504 I would go further and suggest a karmic view might see such success being the result of past good conduct of the type espoused in Jainism. I have spent a great deal of time with both Tibetan and Jain communities and if not made clear already, I have inexpressible admiration for both groups. My fear, though, is that the success of the Jains might make them a more easy target for criticism as compared to

Tibetan refugees and this could be complicating the sallekhanā issue.

502 Sanskrit for “pre-eminence, superiority, high rank or position, fame, celebrity (Williams 2008: 671).” 503 Dundas 2002: 196 504 Dundas 2002: 198

190

Conclusion

This chapter explored the parallel EOL practices of Jain sallekhanā and Buddhist tukdam, remarkably similar in having VSED and elements of immobility, as well as a shared aim for a peaceful death, but each also quite unique in many ways.

Prompted by recent and strong criticism and legal challenges to sallekhanā, and at the request of a Jain organization, after first discussing the practice itself the chapter explored moments in contemporary Indian discourse over the practice and suggested possible safeguards and oversight to protect the vulnerable and satisfy detractors, influenced by medical decision- making consent standards especially with regard to MAiD, such as testing for voluntariness, capacity and being informed and utilizing case reviews. There was also a suggestion that Jain families and communities could consider toning down the publicity of such occurrences, which happens through various types of advertising, adulation and celebration. This would be in the hopes of reducing undue internal or external pressures on candidates that might stem from the social capital that is thought to be gained by families of people who undertake sallekhanā, and thus naturally reduce negative attention towards the practice. Next was a re-framing of sallekhanā as a type of foregoing of life-sustaining measures, as a shift from curing to comfort requiring robust pain management as in hospice palliative care. Some possible ways of delivering pain medication, for Jains who would wish it, by routes other than digestive processes were teased out as possibilities for relief that might not compromise the sallekhanā vows and

VSED. Lastly for this section, sallekhanā was run through an analysis with the Rule of Double

Effect and we found that it could pass the RDE test on a case-by-case basis dependent on the

191 intention of practitioners and that intention could be further tested along with the other suggested tests for capacity and so on.

Next was a section on the Tibetan Buddhist practice of tukdam, including an examination of the distinctions made between killing and omission in medical care from the Pali Vinaya. And to wrap up, the chapter ended with a discussion on possible reasons for why sallekhanā is contested and tukdam is not, considering such things as the difference in measureability of unusual bodily signs, differences in permission processes, publicity versus privacy, terminology usage and religious group statuses in India.

Some readers might ask why I have not suggested safeguards and pain management options for people undergoing tukdam as I did for sallekhanā. The obvious answer is that there have been no complaints against the practice, so it might be best to leave well alone. The practice is not socially operationalized in advance because it is usually a surprise to others. That said, if it were the case that permission was sought in advance by some who would enter into tukdam, I would suggest all of the same recommendations as sallekhanā such as capacity assessments for a final decision of VSED, as well as the exploration of pain management needs. I will be discussing pain management more at length in the next chapter, and one of my concerns specifically has to do with the perception of Tibetan HCPs that Tibetans, especially monastics, have a greater pain threshold despite some collateral observations by visiting HCPs that this impedes proper pain assessment and relief.

192

CHAPTER 4: “I have this pain…” South Asian Perspectives on End-of-life Care Models: Pain Management, Hospice Palliative Care and Medical Assistance in Dying

Introduction

End-of-life care models have in common the pursuit of relieving suffering, and this chapter will address some EOL models as laid out in three sections: (1) pain management; (2) hospice palliative care; and (3) Medical Assistance in Dying (MAiD). The study informants had much to say about the first two topics, but not as much about MAiD as this was not a topic that I intended to pursue in the field. Despite this, many did share their thoughts on various forms of self-killing, including euthanasia and religious voluntary deaths beyond Jain sallekhanā and

Buddhist tukdam. In addition, the Supreme Court of Canada’s Carter505 decision, a landmark ruling which decriminalized MAiD, was given while I was still in the field. Since then the

Canadian healthcare landscape has changed dramatically with MAiD becoming available nation- wide to eligible candidates. Federal MAiD legislation has been implemented,506 and provincial

MAiD legislation507 as well as a MAiD Care Co-ordination Service, to improve access by connecting patients inquiring into MAiD with physicians who provide the service, have both come into being in Ontario. Also in Ontario, a conscientious objection case by the Christian

Medical and Dental Society of Canada versus the College of Physicians and Surgeons of Ontario

(CPSO) over the issue of effective referral, which objecting physicians deem as a form of co- operation, was ruled in favour of the CPSO by the Divisional Court of Ontario.508 CPSO CEO

Shanaaz Gokool said that “the effective referral policy strikes a fair, sensible balance between a

505 SCC 2015 506 Government of Canada. Bill C-14. June 17, 2016. 507 Government of Ontario. Bill 84. May 10, 2017. 508 Payne 2018

193 physician’s right to conscience or moral objection and a patient’s right to care,” but Larry

Worthen, executive director of the Christian Medical and Dental Society, said “some conscientious objectors have given up palliative care since assisted death became legal in Canada in 2016, while others have stopped taking new patients. Some have left the practice.”509

According to CBC News, “[m]ore than 2,000 Canadians have ended their lives legally with the help of a doctor,” with over five hundred of them in Ontario alone.510 Both contentious and quite pervasive in Canada, MAiD is a topic impossible to ignore in an end-of-life project, and both the study participants and religious texts will inform the discussion from South Asian perspectives.

Pain Management

Hindi Proverb: “Someone who has not suffered from pain cannot define pain.”511

A pharmacology textbook states that “[m]anagement of pain is one of clinical medicine’s greatest challenges,”512 and it is one which pervades the practice of every healthcare discipline.

The authors go on to define pain

as an unpleasant sensation that can be either acute or chronic and is a consequence of complex neurochemical processes in the peripheral and central nervous system (CNS). It is subjective, and the physician must rely on the patient’s perception and description of his or her pain. Alleviation of pain depends on the specific type of pain, nociceptive or neurogenic pain.513

The subjective nature of pain makes its assessment very challenging for clinicians, especially when caring for people who have communication barriers. Another challenge is that specific types of pain need to be treated in specific ways in order to be effective. The Director of the pain

509 Payne 2018 510 Weiss 2017 511 jo koī dard se pīdit nahin hai dard ko paribhāshit nahin kar sakata. I have not been able to find a source for this quote, and the English transliteration given by the informant did not correspond to the meaning. J-122414-H-020. 512 Clark et al. 2012: 169 513 Clark et al. 2012: 169

194 center at the University of Southern California explains the differences between the two major types of pain, nociceptive and neurogenic (or neuropathic514) pain:

Nociceptors are the nerves which sense and respond to parts of the body which suffer from damage. They signal tissue irritation, impending injury, or actual injury. When activated, they transmit pain signals (via the peripheral nerves as well as the spinal cord) to the brain. The pain is typically well localized, constant, and often with an aching or throbbing quality. Visceral pain is the subtype of nociceptive pain that involves the internal organs. It tends to be episodic and poorly localized. Nociceptive pain is usually time limited, meaning when the tissue damage heals, the pain typically resolves. (Arthritis is a notable exception in that it is not time limited.) Another characteristic of nociceptive pain is that it tends to respond well to treatment with opioids… Examples include sprains, bone fractures, burns, bumps, bruises, inflammation (from an infection or arthritic disorder), obstructions, and myofascial pain (which may indicate abnormal muscle stresses)… Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. Nerves can be infiltrated or compressed by tumors, strangulated by scar tissue, or inflamed by infection. The pain frequently has burning, lancinating, or electric shock qualities. Persistent allodynia, pain resulting from a nonpainful stimulus such as a light touch, is also a common characteristic of neuropathic pain. The pain may persist for months or years beyond the apparent healing of any damaged tissues. In this setting, pain signals no longer represent an alarm about ongoing or impending injury, instead the alarm system itself is malfunctioning. Neuropathic pain is frequently chronic, and tends to have a less robust response to treatment with opioids, but may respond well to other drugs such as anti-seizure and antidepressant medications. Usually, neuropathic problems are not fully reversible, but partial improvement is often possible with proper treatment… Examples include post herpetic (or post-shingles) neuralgia, reflex sympathetic dystrophy/causalgia (nerve trauma), components of cancer pain, phantom limb pain, entrapment neuropathy (e.g., carpal tunnel syndrome), and peripheral neuropathy (widespread nerve damage). Among the many causes of peripheral neuropathy, diabetes is the most common, but the condition can also be caused by chronic alcohol use, exposure to other toxins (including many chemotherapies), vitamin deficiencies, and a large variety of other medical conditions--it is not unusual for the cause of the condition to go undiagnosed.515

One class of drugs is considered the gold standard “for severe or chronic malignant or non- malignant pain,”516 but they are also fraught. For those looking to relieve such pain in their

514 “Neurogenic” and “neuropathic” seem to be used synonymously, indicating either a neurological origin of the pain or neurological pathology causing the pain. 515 Richeimer 2000 516 Clark et al. 2012: 169

195 patients, “opioids are usually the drugs of choice.”517 Unfortunately, opioids are also subject to abuse and can lead to dependency and accidental overdosing, as is well known and currently saturating the media cycles in Canada due to the current crisis. This led to the City of Toronto calling an emergency meeting on the subject and harm reduction advocates opening a pop-up supervised injection site in the summer of 2017 and in advance of three anticipated sites which will be properly regulated and sanctioned. After what correspondents at the Globe and Mail report as an effective campaign for a new opioid OxyContin from the mid-90s with false advertising of less dependency, clinicians were shamed for being “opiophobic” and subsequently overprescribed: “In 2015, doctors wrote one opioid prescription for every two Canadians, according to the IMS Brogan data, making Canada the world’s second-biggest per-capita user of opioids, behind the United States.”518 The availability of new highly potent drugs have also contributed to the current crisis: “Fentanyl and carfentanil - a powerful opioid used to tranquilize elephants and other large animals - slipped into Canada from China, from manufacturers who shipped it through the mail.”519 Regardless, they remain clinically indispensible in end-of-life care. Clark and the pharmacology textbook co-authors briefly explain how they work:

Opioids are natural or synthetic compounds that produce morphine-like effects. [Note: The term “opiate” is reserved for drugs such as morphine or codeine, obtained from the juice of the opium poppy.] All drugs in this category act by binding to specific opioid receptors in the CNS to produce effects that mimic the action of endogenous peptide neurotransmitters (for example, endorphins, enkephalins, and dynorphins). Although the opioids have a broad range of effects, their primary use is to relieve intense pain, whether that pain is from surgery or a result of injury or disease such as cancer.520

517 Clark et al. 2012: 169 518 Robertson/Howlett 2017 519 Robertson/Howlett 2017 520 Clark et al. 2012: 169

196

Now that the types of pain and their treatments have been introduced along with unique accompanying challenges, next we will explore what the study participants think about pain management.

Informant Perspectives on Pain Management

Interviews and Analysis

During my first lengthy interview, Delhiite and Ramakrishna follower Mr. Sunil Kumar said this when asked during the questionnaire if he had any fear of pharmacies not having pain medication available if needed: “Higher destiny manages these things. If someone is bound to suffer they will suffer. We must trust and believe that God takes care of us. In Buddhism there is no God, not śūnya521 but consciousness, and good and bad angels. Science does not believe in karma. We don't have more or less pain than is deserved. All else is secondary.”522 Sunil seems to be saying that there are metaphysical operations at play in determining whether someone would have access to pain medication or not, and also in regard to their experience of pain.

When asked during the questionnaire if under the circumstances of having an incurable disease like cancer, would he want to live as long as possible even if in severe pain, Sunil said this:

The duration of pain is predetermined, we can’t wish it away. We must experience it. But also one can take pain relief. Money is good karma. Rebirth question: we have bigger problems if we don't have this concept, things are more leisurely if we do. Karma: the purpose of life is to change karma by good actions. Karma and effort are two prongs. If karma is fixed, there is no purpose to life. Our context cannot be changed, but how we deal with it is from good karmas, from previous good karmas.523

521 Śūnya is Sanskrit for “empty (Williams 2008: 1085),” and is often given in another form śūnyatā which is almost identical in being Sanskrit for “emptiness (Williams 2008: 1085).” This is a reference in to the Buddhist concept of “emptiness” (sometimes “voidness”) or the lack of inherent and independent existence of phenomena, including sentient beings, based on the logic of interdependent origination that things are dependent for their existence on causes, parts and mental imputation. 522 ND-110814-H-001 523 ND-110814-H-001

197

How does Sunil rectify fate with karma? He gives pain as predetermined but allows for pain control. When Sunil talks about predetermination and karma together he appears to be saying that certain experiences are unchangeable, which he refers to as the “context” such as pain, but that the response to the context is karmic and changeable, such as having access to pain medication.

Sunil’s seamless deployment first of both omnipotence and karma, and then both predetermination and changeable karma, within the same answers is quite fascinating. Having both divine and human actions intersect in their influence on human experience parallels other

Hindu sources in which both concepts appear in tandem such as with the epic Mahābhārata. For example, in the thirty first section of the epic’s third chapter entitled The Mountain Man in The

Book of the Forest, the ascetic Mārkaṇḍeya comes to visit the exiled Pāṇḍavas and says:

“Behold, O King, all the various creatures, [h]ow all according to kind with force, [a]ct out what the Ordainer ordained for them.”524 Later, in the thirty-seventh section of the same chapter entitled The Session with Mārkaṇḍeya, the ascetic Mārkaṇḍeya again visits and is asked about the relationship between human and divine actions by the eldest of the brothers, Yudhiṣṭhira. The sage has much to say on this topic:

…a dead man’s course here is governed by his own acts done here… Man in his original, God-created body piles up a great lot of good and bad acts… His acts, which had followed him like a shadow, fructify, and he is born deserving a good or bad lot. They who lack the eye of insight believe that this creature is governed by the rule of death and is unaffected by either good or bad markings; but this has been declared to be the course of the stupid. Yudhiṣṭhira, now learn the superior course of the wise beyond that.525

524 van Buitenen 1975: 272 525 van Buitenen 1975: 575

198

Mārkaṇḍeya soon thereafter gives three causal factors which all can contribute to the circumstances of beings: “Some comes from fate, some from chance, some from their acts.”526 In his discourses, and seemingly without tension, the very same sage speaks interchangeably about life being influenced by omnipotence, fate, the cause and effect of actions (and their being of the same nature), and chance. It may well be that fate falls under the umbrella of omnipotence, but it is not made clear in these excerpts. If not, we could well have omnipotence, fate or predetermination, chance or randomness, and karma all operating simultaneously. In contrast to the other major Indian epic, a major point of departure from the Rāmāyaṇa is the Mahābhārata’s venturing beyond mere fate as the cause of circumstances and adding the cause and effect of actions into the formula. This could be explained by the fact that the Mahābhārata is considered by some as a transitional text between the ancient and into the classical, being composed between 400 BCE and 400 CE, in which Vedic concepts continue but alongside new ideas such as karma being tested by the author(s) through placing such ideas in the mouths of the players of the epic. Our informant similarly places omnipotence and karma comfortably side-by-side and without any discrepancy.

As for Sunil’s mention of Buddhism, there is accuracy in the emphasis on consciousness and there being no creator or omnipotent deity in the tradition, but it is not clear to me what he meant by “not shunya” since emptiness (or non-self at the very least) definitely is featured in

Buddhist philosophical systems. Read closely in context, it seems that he might be saying that it is neither God nor shunya that determines the quality of experience, but rather consciousness and

“good and bad angels.” The latter might be a reference to peaceful and wrathful deities, and in the context of human life perhaps suggesting that they intervene, but this is not entirely clear.

526 van Buitenen 1975: 576

199

Dr. Shugan Jain from the ISJS had a very unique perspective on the experience of being in religious hospice environments, such as the Muktibhavan in Varanasi spoken of at length in chapter three, as one which can itself reduce pain. This will be given in full in the hospice palliative care section but Shugan specifically addressed pain management by mentioning that a physician “can give me an injection of a painkiller like morphine or something, so that I didn’t feel the sensation of pain.”527 He goes on to say that the religious adherent can “focus on the soul more rather than the body. Separable: the pain of the body, soul as pacified (śānt)528 as possible, otherwise there will be rough travel to the next life. All’s well that ends well!”529 Shugan mentions two techniques for addressing pain: biomedicine, and a shift in mental focus from the physical to the metaphysical. He is quite accurate is his description of one of the effects of the type of pain medication he is referring to since, according to a nursing textbook on clinical drug therapy, an opioid acts by “reducing the perception of pain sensation in the brain,” but also acts further by “producing sedation, and decreasing the emotional upsets often associated with pain.”530 As for pain being of the body and not of the soul, since the soul consists of multiple states531 and is obscured by karmic matter which “veils the omniscience of the soul,”532 Shugan must be referring to a directed focus by the adherent on two of the three major subdivisions of the soul’s “essential state… (1) jīvatva,533 the spiritual nature of the soul, (2) bhavyatva,534 the capability of salvation.”535

527 ND-111014-JPHD-002 528 Sanskrit for “tranquillity, peace, quiet, peace or calmness of mind, absence of passion, averting of pain (śānti-! śānti-! śānti-! may the three kinds of pain be averted!), indifference to objects of pleasure or pain (Williams 2008: 1064).” 529 ND-111014-JPHD-002 530 Abrams 2004: 79 531 von Glasenapp 2003: 43 532 von Glasenapp 2003: 43 533 Sanskrit for “the state of the individual soul (Williams 2008: 422).” 534 Sanskrit for “the state of being about to happen, futurity (Williams 2008: 755).” 535 von Glasenapp 2003: 41

200

Our Jain philosopher in Jaipur, Surendra Bothara, when asked in the questionnaire about the relationship between the acceptance of death and faith had this to say:

Faith in what? You are talking about faith and hope. It’s a state of hopelessness, it’s almost helplessness. There are conditions where people can be in that state of mind. If their threshold of pain is low, then simply pain would inspire them to embrace death. The person who has faith, he will accept both the things with faith. One would say that, yes, I have faith that God will let me live. Another would say that whatever God says, I have faith in him. The problem is that in this certain state of mind, you cannot be sure of any of these things.536

Surendra indicates that there are various objects of faith, and thinks that faith specifically in the omnipotent divine can be equally applied in order to have hope for more life, or to accept divine will even in the face of death. His connecting of faith to theism is fascinating, given that he is from a non-theistic tradition. Surendra also sees a connection between faith and hope, and that pain can be a cause for people with a low tolerance to lose hope and wish for an end to life.

When asked in the questionnaire about the possibility of a physician not believing complaints of pain by patients, harkening back to the pharmacological textbook’s mention of subjectivity in the experience in pain, Surendra said this:

I have quite a high threshold of pain. This is my belief, and I follow it, that when I go to a consultant then I am open, you see? When I am open, then the threshold of my pain doesn’t work. Even if I don’t require medicine, I will tell him that this is the condition, I might require medicine, then it is my physician’s decision, and I give full marks to them. When you have faith in someone, that should be complete faith. I’m not a flickering type of person. If I go to one person and he says, “you have this thing, you should take this,” then I go to another to confirm it and all that, no. I’ll confirm only when a specialist is required. Because before selecting a physician I have tested enough.537

Although he has much tolerance for pain, it seems that Surendra would follow his physician’s advice rather than relying on his own experience or getting a second opinion. This is because after vetting the clinician thoroughly, he unwaveringly relies upon them. He added that he was in

536 J-112614-J-008 537 J-112614-J-008

201 difficulty at that moment since he was in search of a new physician because his was reaching the end of life.

When asked in the questionnaire if under the circumstances of having an incurable illness, would he want to live as long as possible even if he were in severe pain, Surendra agreed but with this commentary:

Pain is not much of a problem with me. This is something which still needs to be examined. But whatever pain I have suffered ‘till now it doesn’t come under this category. Basically, it’s not related to pain, as far as I think now. It’s related to the possibility of cure. Because if I am sure, or the doctors are sure that it is incurable and I am convinced, then I would not like to prolong things. I don’t strongly disagree because it is variable. There are conditions when you take a strong position, but generally the conditions change. It may be part of my Jain upbringing or Jain principles.538

During our second meeting, an open interview, when asked about pain management during a discussion of end-of-life care, Surendra said this:

Yes, this has been since time immemorial. Anaesthetics, pain-killer were not known in the modern world five hundred years back, but in India they have been in use for twenty-five hundred years. Opium was the base, taken from India only, China also, through Arab countries.539

I had the same discussion on end-of-life care, asking also if it is a necessary part of life, during the open part of my interview with Mrs. Jyoti Kasliwal. Jyoti is a Jain in Jaipur and a force to be reckoned with despite being a wheelchair-bound double-amputee of the legs. The wife of a pediatrician, with great energy and cheer she runs the household of five adults and three children spread through four generations and even invited me to stay for dinner with their family. When asked about pain management Jyoti mentioned that she went “through this kind of state for a long time” when she had her “accident” and had this to say:

What we normally say: people don’t want anyone to go, and we try our level best to make the person survive, but there is a stage when we know they won’t survive, then we do

538 J-112614-J-008. I confirmed with this informant that he was referring to anekantevada, the Jain principle of looking at ideas from multiple different angles. 539 J-122314-J-008a

202

something to give them mental peace. Depends on the person: people around the person would know, but inside my heart whatever happens happens for your good, whatever people around you do is for your good. It is a pain to see someone lying in bed in pain and when people around them can’t do something…a pain both to see someone in pain, or when a person sees others seeing them in pain. Pain is more than anything else. A person in pain would not understand others’ pain because of their own agony.540

Jyoti knows pain intimately from her own experience, and says that it is all consuming and the worst part of illness as it not only affects the person suffering from it, but also by extension loved-ones who suffer at seeing their pain. She adds another concentric layer of relations by further including those who suffer not only from seeing the person in pain, but their immediate relations being in pain as a result. Her husband, Dr. Ashok Kasliwal, who I also interviewed but on a different day said that to “relieve pain”541 is the main purpose of end-of-life care according to his clients.

Mr. Hitendra Sharma, a Hindu newspaper editor in Jaipur who gave us the proverb at the start of this section, was a friend of the Muslim owner of the guest-house I stayed at for two months. We met in his office in the building of the newspaper he worked for, and I remember becoming emotional during our discussion since my maternal grandmother had just passed away and I was in the midst of trying to get back to Toronto for the funeral. Alas, it was impossible logistically to make it happen and as she was Jewish, the happened very quickly. Hitendra noticed my state and was kindly empathetic. When asked in the questionnaire if he had any concerns with being able to get pain medication if needed, Hitendra agreed and said that there are obstacles to pain medication access in north India:

Because some kind of palliative care is given in our parts, I am informed/exposed to those facts. In north India, there is much less palliative care and they don’t give morphine, which is the best medicine for pain management. Maybe this will change with medicines from pharmaceutical companies since in south India there are strong palliative care units. The act/law on narcotic drugs is very strong in India. Hospitals usually don’t want to be in the

540 J-120414-J-013 541 J-121914-JMD-019

203

mess regarding narcotic drugs. Many doctors I have been in touch with say there should be good pain management. For procedures and clinics in north India, there are only two in these parts: Avedanā (pain) Ashram behind SDMH.542 “Dard”543 common word for pain, “avedanā” Sanskrit (vedanā)…empathetic word towards pain.544

In Hitendra’s estimation, palliative care and pain management are patchy by jurisdiction and some institutions are skittish around opioids because of strong narcotics regulations. Judge

Kannan gives some of the historical background behind such legislation, beginning during the

British Raj:

Pre-Constitution enactments spelt out no more than the imperial interest to protect trade, and if there were health concerns, they were incidental. The Opium Act, 1878, the Poisons Act, 1919, and the Dangerous Drugs Act, 1930, had control mechanisms that addressed issues of production, licencing of drugs, and the like. The Lt Col. Chopra Committee, set up in 1931, recommended drug control machinery that led to the establishment of a Central Pharmacy Council, Provincial Pharmacy Councils, and a Central Drugs laboratory for data standardization (with smaller laboratories in the provinces). This led to the enactment of the Narcotic Drugs and Psychotropic Substance Act, [1985],545 which repealed the Opium Act and the Dangerous Drugs Act with more stringent provisions. The committee recommendation was again the raison d'être for the enactment of the Pharmacy Act.546

542 Santokba Durlabhji Memorial Hospital. I visited this institution, including the pain clinic mentioned, but had great difficulty connecting with any staff or administration. 543 Hindi for “pain (McGregor 1993: 482).” 544 J-122414-H-020. To clarify some terms from this quote, the Sanskrit “vedanā” translates as “pain, torture, agony (Williams 2008: 1016)” and “avedanā” as “painless (spokensanskrit.org)” since in Sanskrit, adding a short “a” prefix makes the word its opposite. We find this same linguistic operation in English as well with such words as “political” and “apolitical (Kishor 2014),” and similarly with the prefix “an” in such words as “iconic” and “aniconic.” The informant first gave avedanā as “pain,” even though it technically means the opposite, but this first mention could simply have been to identify this institution as a pain clinic since when rendered in English, such a clinic would not typically be called a “pain-free clinic” but rather as a “pain clinic.” The informant also stated that avednā in Sanskrit is the “empathetic word towards pain,” which isn’t entirely clear in meaning and made me think that perhaps they were referring to āvedanā, with a long “ā” prefix which is an emphatic version of the word which gives it greater emphasis rather than making the word opposite (Kishor 2014). This word could mean something like “extreme pain.” It could be that the informant meant “emphatic” when stating “empathetic,” mixing up the English terms and thinking that the spelling of the institution was āvedanā rather than avedanā. However, I tend towards doubt on this and think that his use of the term “empathetic” is simply alluding to freedom from pain, or the efforts of pain management which includes the use of medication but which might, at times, also include empathy or “feeling with the other.” 545 Kannan mistakenly gives 1940 as the date of this Act. 546 Kannan 2014: 3

204

There have been several amendments to the Act, but especially noteworthy is the move towards increased access to essential pain medications from a 2014 legislative shift as reported by The

Hindu earlier in the same year in which I began my field-work.547

That access to morphine is easier in south India, as reported by Hitendra, is confirmed by another informant. Sister Cicily Jose is a Christian nun and head nurse at Holy Cross Hospice in

Perumpadappu, Kerala. I will give an elaborate description of our hospice visit in the hospice palliative care section and focus here only on pain management. During our interview, one of two interviews with females that my wife attended with permission from the informant, Sister

Cicily said that there were no availability or access problems for pain medication and that the institution has a “license for morphine.”548 I tailor-made interview questions for the hospice context and asked Sister Cicily what is done for client pain management, to which she replied that they use “Tramadol,549 voveran550, ultraset.551 Prayer every day - eleven a.m. – we have prayer together. We go to the new patient, sit around him, sing songs, make them comfortable.”552 In addition to pain medication, Sister Cicily also sees fellowship and group prayer as other means to bring relief to the dying. A Sikh in Delhi also mentioned that having company would be important to them if they were having pain as they would “[w]ant someone to stay with me because in strongly pain.”553 Sister Cicily also mentioned there being “so many suffering with pain at home, then when they come they say ‘I should have come earlier’.”554 Dr.

Tenzin Tsundue, a physician in Dharamsala who kindly helped facilitate my wife and myself in teaching on pain management and palliative care at the Tibetan charitable Delek Hospital,

547 Maya 2014. See inset box #8 for full article. 548 C-021815-C-31 549 An opioid. 550 A non-steroidal anti-inflammatory (NSAID). 551 A combination of the opioid Tramadol and acetaminophen. C-021815-C-31 552 C-021815-C-31 553 D-010615-S-024 554 C-021815-C-31

205

Box #8 similarly has patients who “can’t manage pain at

555 Passing of NDPS Act Amendment Bill will home so they come here.” Lastly, the venerable make morphine more accessible Maya, C. nun explains who is included in pain management The Hindu, Feb. 23 2014 discussions, and some of the side-effects that can A major relief to pain and palliative care movement in country accompany the use of opioids: “We talk to the

The passing of the Narcotic Drugs and Psychotropic Substances (NDPS) Act patient about medicine, explain to the family about Amendment Bill by Parliament is all set to release the shackles on the pain and palliative medicine and their dying condition, and in giving care movement in the country, as morphine, the essential medicine for pain relief, becomes pain meds that there can be breathing difficulties more accessible to those suffering from chronic pain. and sometimes constipation.”556 Nursing Professor

Welcoming the amendment to the NDPS Act of Abrams affirms such side-effects: 1985, M.R. Rajagopal, chairman of Pallium India and one of the pioneers in pain management in India, said the simplified Opioids exert widespread pharmacologic effects, regulation would mean that the final legal especially in the CNS and the gastrointestinal (GI) barriers that prevented the needy from system… Sedation and respiratory depression are accessing morphine were being removed. major adverse effects and are potentially life threatening… In the GI tract, opioid analgesics slow “However, there are more than just legal motility and may cause constipation and smooth barriers. Two generation of doctors have been muscle spasms in the bowel and biliary tract.557 practising medicine without having even seen a tablet of morphine and we cannot change their Sister Cicily does well to educate clients and mindset overnight,” Dr. Rajagaopal told The Hindu. families with regard to pain management, including

Sensitising the medical fraternity to providing pain relief and managing the medicines; the potential side-effects. To be sure, many patients, teaching medical undergraduates about pain and palliative care; and training them to put family members and SDMs are hesitant when their knowledge into practice were a long process. approaching pain medication because of their

Even in Kerala, where palliative care sedating effects potentially causing unconsciousness movement had firm roots, most major hospitals did not make morphine available because and respiratory depression which can hasten death. doctors would not prescribe the drugs, he said.

555 DSL-040815-BMD-42 556 C-021815-C-31 557 Abrams 2004: 80/82

206

Box #8a The RDE is often applied to the use of opioids at the (Maya 2014 article continued) end of life, as with palliative sedation (as explored in Thus, simplifying the regulations would not result in a sudden spurt in demand nor would chapter three “Is it Suicide?” Ritualized and it lead to morphine becoming available to every patient overnight. Medicalized End-of-life Practices: South Asian ritual

“India last year consumed around 300 kg of morphine for pain relief, while the actual practices of fasting and Immobilization at the End-of- annual requirement is estimated at 36,000 kg. We expect the demand to increase slightly life (Jain sallekhanā and Buddhist tukdam) and next year,” he added. Medical Assistance in Dying (MAiD) Safeguards), There has been fears from some quarters that with the relaxation in NDPS Act, there will since the adverse effects are foreseeable but not be a sudden surge in the demand for morphine, which may not be met as over 90 intented by the consenting party and the clinical team. per cent of the opium produced here — India is the largest producer in the world — is This does not mean that some do not intend to hasten exported. However, these are misplaced fears as the International Narcotics Control Board, which regulates the cultivation of poppy death in using opioid analgesics, as is the case with plants and the production of opioids, will not stand in the way of India’s need to grow MAiD. In my early days as a caregiver on a ward more poppy. which included oncology, haematology, palliative Leaders of the palliative care movement have already prepared a standard operating care and HIV/AIDS populations, a patient I was procedure for implementing the amended Act, which will be forwarded to all States as tending to had a family member asking the nurse to soon as the President gives his assent.

Easy pain relief for all is still a long way up their pain medication as they were “taking too ahead as implementation of the Act and training doctors are all easier said than done. long” to die. I have heard this many times over the But the situation will improve, now that the shackles are off. years, but this one stands out most clearly. The patient

was sleeping, given by Abrams as an observable

“therapeutic effect” in the use of opioids,558 and was free from other physical signs of pain such

as restlessness and grimacing. They appeared comfortable and therefore there was no reason to

increase the dose. I was present for the entire interaction and was impressed when the nurse

railed against the family member by saying that they would not intentionally hasten death and

558 Abrams 2004: 96

207

Box #8b could lose her license if they did. In the clinical (Maya 2014 article continued) setting, typically an order for morphine is Much awaited accompanied with a standing order for medication The amendment to the NDPS Act has been a much-awaited one. The tough provisions in the that relieves constipation, such as lactulose, as a Act, which were intended to prevent easy access to and abuse of opioids, also effectively shut the door on pain relief for millions. matter of course. If the constipation is not

The amendment will enable registered agencies sufficiently addressed by such a drug, interventions to procure morphine by obtaining a single licence from the respective State Drugs such as enemas and/or disimpaction can also be Controller. implemented.

Returning to our newspaper editor Hitendra, when asked during the questionnaire if

hospice palliative care hastens death, he strongly disagreed and gave this commentary:

The person will die from pain only if there is no palliative care…they will feel down, break psychologically, no support, cannot concentrate on their emotions if in pain, they will not live a long life. When talking to family members, if in strong pain they will just cry out and do nothing, all other people will also feel negative because they are seeing me in pain, be in grief…grief-stricken cocktail, atmosphere filled with pain and grief and negativity. If the doctor gives me medicine for pain management, then I am happy, family is happy, surroundings are happy, everything is happy! If a person in pain is given palliative care, this is also a religious act, because doing good to the person, giving positivity to him and family and other people seeing them, or other people suffering from same pain will become positive by seeing palliative care in action. This is also a religious act, in my opinion. If a child is hungry outside the office, it is my duty to give them something to eat. I think this is a religious act, and we can term this as “humanity” also.559

As with Jyoti, Hitendra considers not only the one suffering from pain but also the vicarious

experience of those watching a loved-one suffer. Her also sees pain management as an essential

need, and its deployment a religious duty.

Mr. Thoufeek P. Zakriya, my sole Muslim informant in Cochin, Kerala, is a fascinating

individual that was referred to me by another Muslim who worked in embroidery for a locally

well-known Indian Jewish woman, very advanced in age and one of very few Indian Jews I have

559 J-122414-H-020.

208 ever met. Meeting her was very emotional for me, like meeting a long-lost grandmother, and I wept when we sang Hebrew songs together.560 The fact that Muslims and Jews collaborate in this region was very impressive to me, and I was told by many that because Jews have been in Kerala for so long, there are no instances of anti-Semitism among the local population. Thoufeek himself is a living example of interfaith principles and activity. Originally a statue-maker, he became increasingly observant and because of the ban in Islam against fashioning anthropomorphic images, he took to calligraphy. Thoufeek does a lot of Hebrew calligraphy, including restoring a scroll on the history of Jews in Cochin. We met at the heritage home where my wife and I were staying,561 and during the interview he even wrote my Hebrew name on the spot for me in beautiful calligraphy. Thoufeek mentioned in a personal narrative an example of how his own pain while in hospital interfered with communication and decision-making: “I was in too much pain, and couldn’t talk to the doctor or my father.”562

Next we look to our Tibetan Buddhist informants in Dharamsala, starting with Lobsang

Rabsel who we met in chapter two, Deputy Director of Lha which provides skills training for new arrivals says that “death itself is painful, of course.”563 Another informant we met in chapter two, Joint Secretary of the Department of Health for the CTA Mr. Thutop Namgyal, was delegated the task of talking to me by a superior after I got in touch with the department. We met in his departmental office, which along with the rest of the CTA is on the same grounds as the

LTWA, somewhere where I mentioned earlier having spent an enormous amount of time while studying and also having tea and snacks at both the Nechung Café and just outside the main

560 Especially the Sabbath hymn Hine(y) ma tov u’ma-nayim shevet ach-im gam ya-chad, or read in Hebrew from right to left), which can be translated as “how good and) הִנֵּה מַה טוֹב וּמַה נָּעִים שֶׁבֶת אָחִים גַּם יַחַד how pleasant it would be for brethren to live together in harmony.” 561 I will always have a particular fondness for this homestead since, incidentally, it was the location where I took some weeks off from research to apply to the fellowship in Clinical and Organizational Bioethics that led to my current job as a clinical ethicist. The owner also kindly helped me network for informants in the area. 562 C-020915-M-028 563 DSL-032515-B-34

209 compound at Gadong Café, both incidentally being connected to two of the monasteries headed by major oracles. Namgyal564 had a lot to say about pain and, again, made it clear that his views are his own and do not represent those of the CTA or the Department of Health. Under the topic of trust, when asked if the health care system puts peoples’ medical needs above all other considerations when treating their medical problems, he had this to say: “There are even some patients who just complain all the time: ‘I have this pain…that pain,’ every day they complain but in fact they don’t have any problems. It’s all about their mentality.”565 This is where the quote in the title of this chapter originated, and seems to indicate a tendency by some patients to over-report or even fabricate pain complaints. However, when asked if sometimes doctors do not believe that patients are in pain, Namgyal strongly disagreed and couldn’t imagine this ever being the case. After a bit of a discussion of those who might be drug seeking, he said: “Cancer patients obviously have strong pain! If they have stomach cancer, then definitely there is so much pain and the patient says ‘yes, I have pain’ and then the doctor obviously will say ‘yes.’”566

When asked if doctors sometimes do not prescribe pain medication, he agreed and said “Yes, that’s true… The doctor will look out for the good for the patient… If we take so many painkillers then after some time when we are in real pain, then it won’t work, that’s what I heard… That’s how doctors feel.”567 If we take all of what Namgyal has said so far, he and physicians distinguish between complainers and those who overuse pain medication to the point of developing a tolerance which diminishes the effects of the drug, and those who have true pain.

564 For Tibetans, the first name is taken from the first name of the name-giver (e.g. children and monastics who receive a name from His Holiness the Dalai Lama – a.k.a. Ven. Gelong Jamphel Ngawang Lobsang Yeshe Tezin Gyatso - go by “Tenzin” and then a unique second name, including myself having received the name Tenzin Sherab) and thus operates as a last name does for Indians. In the familiar, I refer to Tibetans by their second name. 565 DSL-032715-B-36 566 DSL-032715-B-36 567 DSL-032715-B-36

210

When asked about preferences for care under the condition of having a terminal illness, and whether he would want to live as long as possible even with brain death, he shared this:

This is a very, very difficult question, because does terminal illness mean I don’t have any chance of improvement? I’m surely going to die? Then let me be. From a Buddhist point of view, what I feel is if the person dies in a lot of pain, then he might have earned many bad merits from his earlier life and during this life when he was about to die, painfully, then the bad karma is actually reducing at the time when he is on his death bed. Dying painfully eventually takes off your bad karma, and you die, your bad karma vanishes, ends everything. Then in your next life it would be (not sure! [chuckles]) a more beautiful one, a good one. This is what I feel, from the religious point of view also because as a Buddhist we feel that the pain is because of our own karma, it’s because of us. We definitely did bad things in an earlier life or maybe in this life. So we should always do good things. As a Buddhist, let me suffer as much as needed it’s because of my own karma…let me suffer it. I feel like it’s kind of religious but in practice I don’t know, to be very honest!568

Namgyal gave an earlier answer in the questionnaire which aligns with this, agreeing that it is a purification to suffer during the dying process. He sees pain as the ripening of bad karma from prior deeds, and merely experiencing it as a way to positively alter karma such that it will improve the quality of the next birth. During the open interview, Namgyal reaffirmed this view by saying “if we suffer at the time of death, a very painful death, this will eventually shed off, decrease bad karma.”569 When asked if being comfortable and out of pain would be more important to him than living as long as possible, he was ambivalent and said:

It is easy to say anything. Even when we have some small pain, we have a headache, sore throat, stomach pain it causes so many problems. The charm of our life, our way of life gets disturbed even with a small pain. So I wonder what would it be if we have some terminal, huge pain…I’m just wondering.570

A physician from the Tibetan Delek hospital, Dr. Tenzin Lhundup, when asked about what he thought end-of-life care is, answered: “Pain management, nutrition management. If not orally we can ask the patient or relatives for NG, or to give IV. Sometimes we use drugs for

568 DSL-032715-B-36 569 DSL-032715-B-36 570 DSL-032715-B-36

211 vomiting, abdominal pain, but the most important is pain management.” 571 Dr. Lhundup mentions the various routes that can be used in delivering pain medications, as we touched upon when discussing pain management and sallekhanā in chapter three “Is it Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian ritual practices of fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying

(MAiD) Safeguards. He also mentions the control of symptoms in addition to pain, such as for nausea. When asked what he saw as a good death, he said it should be a “rapid death without lingering. Easy, with no troubles for relatives, and the peole who care for them. Painless.”572

Near where we were staying in Dharamsala was a wonderful bakery café where we often got cake and coffee. The owners were a couple, and the husband Mr. Dolma573 Kyab574 often praised his wife for her baking skills and was always a chatty and endearing fellow. One day, I noticed various books on a table in the back, some on religion and some on physics and this led to our first discussion as we were both very interested in such topics and their intersections. The café was very well maintained and with lots of light and wood, and we had our interview at this back table, once in awhile with him running off to serve a customer. When asked about doctors potentially not believing complaints of pain, he said:

These days equipment can measure it. Even psychological pain can be detected. Tibetan doctors can measure with the hand. It’s obvious, they can detect immediately. In general, for health, after all, the mind is so important. Even with a toothache, losing a finger, looking at only the body is wrong. Mind has to be included, mental state. Doctors should take care. If someone is in pain, should be asked “who do you love, who do you love the most?”575

571 DSL-040115-BMD-37 572 DSL-040115-BMD-37 573 This is a good example of the unisex nature of many Tibetan names. As with “Tenzin,” used by both male and female genders, this name “Dolma” belonging to a male is the Tibetan for Green Tara, a female Buddha/Bodhisattva/Deity. 574 Tibetan Wylie: skyabs. Meaning “refuge, protection, savior, protector, shelter, defense (Yeshe 2011).” 575 DSL-040615-B-40

212

I am not sure which equipment he is referring to, as pain is subjective and even in advanced biomedical settings, pain is not easily measured even by various means such as self-reporting, proxy reporting (shown to be quite inaccurate), and behavioural changes (such as grimacing mentioned in an anecdote earlier).576 Changes in vital signs have the lowest sensitivity for measuring pain, since there can be many causes to such changes.577 According to Dr. Y.K.

Dhondue, the Junior Assistant to the personal traditional medical physician of His Holiness the

Dalai Lama, traditional pulse (tsa578) diagnostics are Chinese in origin, can detect problems in various organs by using different parts/sides of the fingers during a reading, and can even predict proximity to death.579 So powerful is this diagnostic tool that patients apparently don’t give their complaints to traditional physicians but, rather, after their pulse reading are told their condition and what is needed to treat it.580 Dr. Dhondue made no mention of measuring pain through pulse, as Kyab does. Kyab also emphasizes the importance of the mind when dealing with health problems in a more holistic way, and like some of our other informants, suggests an alternative means of dealing with pain by having the person focus on someone they love. He also agreed that if he were in pain, he would not tell anyone: “Try to avoid. If I say I’m in pain then it makes pain for others, but I would tell the doctor if there was a solution.”581 Kyab sees pain as mutable through religious exercises:

In meditation, pain is a funny subject. You can change pain, can increase compassion. Very advanced practice, mentally/physically can be transformed into something else so it’s not painful. His Holiness the Dalai Lama had gall bladder pain in Bodhgaya582, cancelled

576 RNAO 2013: 25-26 577 RNAO 2013: 26 578 Tibetan Wylie: rtsa. This has multiple meanings including “pulse (Valby 2011).” 579 DSL-041115-BND-43 580 DSL-041115-BND-43 581 DSL-040615-B-40 582 The location marked and named as the spot of the Buddha’s enlightenment.

213

Kalachakra583. On the way He saw a poor Indian man on cart, with white hair, hopeless, so much pain, and sweating. He said, “I remembered that man, and I couldn’t feel my pain.”584

I have also heard His Holiness the Dalai Lama speak of his hospital visits and seeing suffering beings while travelling the roads of India, and that in such circumstances he employs a practice called tong len585 or “Giving and Taking (Mounted Upon the Breath).” It is a visualization that begins with imagining breathing in the pain of others in some form, such as black smoke, with each inhalation. When the pain of others reaches the heart, it suddenly and brilliantly transforms into clear light. With each exhalation, one breathes out the clear light so that it touches those that were imagined to be in a state of suffering and they are immediately relieved of all of their pain and other problems. All of their wishes for happiness are thought of as being fulfilled. This is repeated multiple times. His Holiness refers to it as a “battery recharge” for compassion. Each day before starting a hospital shift, I do a short version of this practice and teach it to Buddhist prisoners as well. Interestingly, the name of the practice is an inversion of the natural order of breathing typically given in practice instructions since it starts with “taking” suffering and is followed by “giving” happiness. When teaching this practice as a monk in the early start of the new millennium at a meditation centre in Dharamsala, I remember an Israeli sincerely asking if by breathing in suffering the practitioner can “catch” something, such as a disease like cancer. I assured them that, by the traditional teachings on the practice, the opposite is said to be the case: taking on the suffering of others is the best means of eliminating one’s own. Namkha Pel, “a

583 A tantric deity practice. His Holiness the Dalai Lama regularly performs Kalachakra empowerments worldwide, giving the general purpose as promoting world peace, and those done in Bodh Gaya (recognized as the site where the Buddha reached enlightenment) are attended by about 100,000 people. 584 DSL-040615-B-40 585 Tibetan Wylie: gtong len. Literally “[g]iving and taking (Yeshe 2011),” even though the practice is in the order of first taking (suffering), then giving (happiness).

214 close disciple of Je Tsong-kha-pa,” 586 composed “one of the most profound transmissions in the genre of mind-training precepts”587 entitled Mind Training Like the Rays of the Sun in which he describes the ultimate purpose of “taking () from inhabitants (living beings).”588

Particularly, Namkha Pel explains that “[i]n taking all the sufferings of others upon yourself, you should not keep them in some inconspicuous place, but in your heart, since the very purpose of accepting them is to eradicate your self-centred attitude… Think that your selfish attitude is mellowed and subdued…”589 This ties back to what the informant quoted from His Holiness the

Dalai Lama, that concern for others shifts one’s focus from one’s own pain, thereby reducing it’s impact, and helps to eliminate unhealthy, or exaggerated, self-concern.

The personal physician to His Holiness the Dalai Lama, Dr. Tseten Dorji Sadutshang590, says that at Delek Hospital “we use pain management as required. We are not aggressive, the use of opiates is minimal, pain tolerance is very high. We hardly see any patients shouting in pain, or agitated at the time of death, this is uncommon. Very gentle deaths.”591 Another Delek physician,

Dr. Tenzin Desel, also mentioned the high pain tolerance of Tibetans: “pain threshold in our setup, in seeing Western people also, their pain threshold is much lower then our Tibetan population.”592 He goes on: “if people have pain, we try to give milder meds, we don’t want to sedate much because we believe clarity of mind is important when we die. We try to not sedate

586 Pel 1992: vii. Lama Tsong Khapa, sometimes referred to simply as Je Rinpoche, was mentioned in an earlier chapter but, again, was a fourteenth century Tibetan scholar-monk and is the Root Guru of His Holiness the 14th Dalai Lama. 587 Pel 1992: vii. Tibetan Wylie: blo sbyong. Translates as “mind-training (Yeshe 2011).” Lojong was also mentioned in an earlier chapter as having an emphasis on transforming difficult conditions into opportunities for personal development in one’s religious practice. 588 Pel 1992: 73 589 Pel 1992: 73 590 Also the Delek Hospital CMO and Medical Advisor to the CTA. 591 DSL-040715-BMD-41 592 DSL-041815-BMD-45

215 the patient if not necessary, for maximal alertness. If pain is more, we give fentanyl593 and morphine which will sedate them.”594 Clarity of mind at death was reported by multiple

Tibetans, 595 and in both formal and informal discourse such clarity is given as crucially important for the process of transmigration. According the Vishuddhimagga (Path to

Purification) of the fifth century Indian scholar-monk Buddhaghosa, for the dying person there is a

cognitive series of impulsions…that arose contingent upon [kamma596 or its sign], [from which] death consciousness arises making the life-continuum's objective field its object. When it has ceased, rebirth-linking consciousness arises contingent upon that same kamma or kamma sign that had come into focus, and it does so located in the [future] destiny, being driven there by the force of defilements that have not been cut off.597

This string of events is thought of as subject to manipulation from the stage of the “kamma or its sign,” a mental object which can be positive or negative, and can thus altar the outcome of the next birth since the quality of what follows is subsequent is contingent on that first moment of cognition. Buddhaghosa compares the object of the last moment of mind before death consciousness to cows by a gate in a pen. Those that will get out first are the ones closest to the gate, strongest and most in number. Similarly, the object of mind near death will be that which is closest to that moment and having the most strength and numbers from familiarity with such thoughts and emotions in life. Left alone, whatever arises will determine the rebirth outcome. To counter this, in pan-Buddhist approaches to dying it is recommended to use whatever means to influence the person towards virtuous states of mind to ensure that the last moment of mind

593 Another opioid, but with rapid onset and short duration, often in the Canadian news cycles because of the current opioid crisis. 594 DSL-041815-BMD-45 595 DSL-032515-B-34, DSL-032615-BPHD-35, DSL-040815-BMD-42 596 Pali for ‘karma.’ 597 Buddhaghosa 2010: 567, text in italics added

216 triggers positive karmic imprints so that the chain reaction through the death and rebirth-linking consciousneses ends with a good rebirth.

Another layer of meaning can be given for “clarity” in that the mind itself is defined as

“that which is clear and knowing”598 for which

there are varying interpretations of its meaning. Some say that 'clear' refers to the object's appearing clearly from its own side to the appearance factor of the mind and 'knowing' refers to the subject, the awareness, apprehending or knowing the object. There are others who say that 'clear' and 'knowing' both refer to the subject's perceiving the object and thus the definition means 'that which illuminates and knows.'599

Also, “the root text of Dharmakīrti's Commentary on (Dignāga's) 'Compendium on Prime

Cognition' which says that the nature of mind is clear light (ābhāsvarā,600 'od gsal601) with the word 'clear' meaning, in that context, emptiness.”602 Dr. Desel is obviously speaking of ‘clarity’ as conscious alertness at death, but the word’s multiple uses are noteworthy in that it speaks also to both the congnizing subject and the mind’s true nature as empty, or interdependently originated and lacking in inherent existence.

From Dr. Desel’s experience, the use of opioids for pain that is harder to manage necessarily causes the unwanted effect of sedation. Although sedatives proper are not used at

Delek, according to a visiting foreign Registered Nurse (RN) who I will discuss shortly, opioids are used at times to provide sedation when needed.603 Although sometimes used for that purpose, sedation is actually considered a side-effect of opioids, and there are means to avoid it:

Although tolerance to these side effects often develops, dose initiation and rapid dose escalation may result in sedation and consequently lead to noncompliance and/or reduced

598 Rinbochay 1986: 46 599 Rinbochay 1986: 46 600 Sanskrit for “shining, bright (Williams 2008: 145).” 601 Tibetan Wylie given in quote, pronounced osel. Meaning “luminous clarity, luminosity; brightness, clarity, lucidity, clear light (Yeshe 2011).” 602 Rinbochay 1986: 445-6 603 DSL-042915-RNNA-50

217

quality of life. The suggested treatments are opioid dose reduction, opioid rotation, and use of psychosomatic stimulants.604

Suffice it to say that between these approaches and the various drugs “to treat opioid-induced sedation,”605 it is not necessary to have opioids result in unwanted sedation.

When asked if there are there any differences between the type of end-of-life care one would receive at home versus in hospital, Dr. Desel responded: “Difference: in hospital we have a pain management ladder pattern, mild to strong.”606 So, it seems, that such robust pain management protocols would not be used when people are dying at home in Dharamsala.

Another physician from the Tibetan Delek Hospital, Dr. Tenzin Tsundue, says that some

“can’t manage the pain at home so they come here.”607 He agreed when asked if he has problems accessing pain medication when he needs to prescribe: “We try to arrange it, many opioid drugs are not easily available. We have a few donated medicines, and use that first, then try to arrange if someone is going to Chandrigar608 to buy for a patient…two hundred and fifty kilometers, six hours drive… We need a specific prescription for terminally ill patient.”609 This accords with what newspaper editor Hitendra said about access to opioids being more difficult in the north, and contrasts the ease that Sister Cicily has with access in the south-western coastal state of

Kerala.

The sole female Tibetan and sole Tibetan RN in the study, who was introduced in the second chapter on bad news, worries that “if we tell a patient about their disease, it might

604 Benyamin et al. 2008: S109 605 Benyamin et al. 2008: S110 606 DSL-041815-BMD-45 607 DSL-040815-BMD-42 608 Chandigarh is a major city in the neighbouring state of Punjab, and the travel-distance and time are given if done by car from Dharamasla. As with other major cities such as Delhi and Dehradun (both of which having large Tibetan communities), people living in Dharamsala try to arrange sending items back-and-forth with those already making such trips. 609 DSL-040815-BMD-42

218 increase pain.”610 Further, she feels that “if people come to hospital, they want to survive. If they know about a terminal prognosis, they only want to relieve the pain, to die without pain. Some patients can’t talk to relatives that they want to do this or that. We tell attendants the pain has to be relieved.”611 This HCP advocacy on behalf of the patient to “give pain killers to relieve pain” is given great importance by this nurse as she feels that “with strong pain, it is said they cannot survive.”612 When asked about a good death, she had this to say:

Without pain, pain free. If earlier they are in severe pain, if die without pain, calmly, then we say this went easily, not bearing pain for a long time. Some remain in pain for many days. Some die quickly - no problem for anybody. Sometimes patient have to be in pain for a long time, the attendant is there for long time, they are also frustrated and can’t do anything.613

That some struggle with pain over extended periods of time is somewhat discordant with some of the Tibetan physician informant perspectives which stated in general that pain thresholds are high, opioids are needed infrequently and that few have intractable pain difficulties when dying.

Such gaps between the reporting of physician informants and what might be happening at the bedside as per the nurse’s perspective is further clarified by including foreign HCP perspectives on pain management at the Tibetan Delek Hospital. Their views are quite informative, despite their presence at the hospital being over a short period of time and being a small sample group of only two and thus lacking in statistical power. A female American medical student who did a rotation at Delek had this to say: “Doctors have reluctance and underutilize pain meds. They use traditional medicine for calming patient. Even between two

610 DSL-042315-BRN-48 611 DSL-042315-BRN-48 612 DSL-042315-BRN-48 613 DSL-042315-BRN-48

219 patients, pain not taken care of, benzos614 and opioids… No one cares about pain here, they accept it as part of disease.”615 This is affirmed by a visiting foreign nurse:

There was an HIV patient, a brain tumour patient, and a stroke patient, all being palliated. None were on pain meds except Tylenol.616 One was on sedation because they were hallucinating (HIV in the brain), they would get agitated and fight (behavioural management). When I asked why no pain meds were being given they said the “patient is not in pain,” but the patients couldn’t talk so how was this assessed? This led me to do education on pain management and assessment. Many times RNs and physicians made statements about Westerners needing more pain meds, and women needing more pain meds. Monks, they say, never need or take pain meds. When I asked why, they thought it was a bizarre question. One time during rounds with a particular palliative care patient I asked them to ask if he had pain, they asked and patient didn’t respond, and they said “see? No.” The patient couldn’t communicate so I pointed out some behavioural aspects (flexed, curled up in corner like a baby, eyes barely opened) indicated pain. If they knew about behavioural pain scales, they would know this was a sign… There was a knowledge gap in pain management techniques. I taught about assessment and to check one’s own values and own ideas about pain and who defines pain.617

The visiting nurse, like the visiting medical student, also felt that patients were being under- medicated with regard to pain. The nurse pointed out the potential causes as a lack of observing body-language in pain assessment such as with behavioural pain scales,618 and bias about pain tolerance.

Summary

There were some genuine concerns expressed with regard to pain medication accessibility, with corroborating accounts that access by both institutions and patients is easier in some parts of South India in contrast to some regions in North India. Although one informant explained variations in terms of metaphysical processes, analyzed with the help of a classical

614 A sedative. 615 DSL-040315-CMD(c)-38 616 Regular Tylenol, or acetaminophen, without any added opioids, such as codeine. 617 DSL-042915-RNNA-50 618 There are other types of pain-scales that can be used beyond verbal ones such as: visual analogue scales (or graphic rating scales) in which the patient indicates where their pain lies on a line that has a range from zero pain to great pain; and picture or face scales that have images of faces with expressions indicating different levels of pain (Cardiff University, Pain Community Centre). These can both be particularly helpful when working with nonverbal patients.

220

Hindu text, there have been system-level obstacles that saw a positive shift with the latest amendment to legislation.

Some informants spoke of adjunct means of pain control, such as a shift in focus from the physical to the metaphysical, prayer, fellowship and mere companionship. Informants in both

North and South India spoke of people being unable to manage pain at home and then going to a facility for assistance, and informants at multiple sites mentioned that pain itself could cause death. Some informants specifically mentioned that there are concentric social layers around the dying person in pain, with outer layers not only having concern with the person in pain but also being impacted by the suffering of all inner social layers such as the family of the person in pain.

Pain threshold, or tolerance, was mentioned by some informants. Experiencing pain by someone with a low threshold given as perhaps being a cause for someone to wish for life to end, and some seeing a difference in pain tolerance between cultural groups. More than one informant spoke to the experience of pain as a karmic requirement in order to purify that negativity. The topic of preventing the side-effect of sedation in the use of opioids for the sake of mental clarity at death was explored with the help of a classical Buddhist text concerned with cognitive processes leading up to transmigration.

Sole outlier informants spoke of pain management as a religious duty, pain as a disruption to daily life, pain interfering with communication and decision-making, pain as both mutable and measurable, and false complaints or over-reporting of pain.

Lastly I will mention that there seemed to be some discrepancy at Delek Hospital between Tibetan physician reports of pain experiences and management, and collateral information from a Tibetan nurse and two visiting North American HCPs. Physicians gave the usage of pain medication as minimal due to high pain thresholds, whereas the nurse and foreign

221

HCPs gave examples of people in intractable pain as well as the latter speaking of gaps in pain management expertise particularly with regard to behavioural assessments for those who are unable to communicate. This could possibly be a Tibetan cultural artifact from social reinforcement to endure pain, similar to that seen in normative Jain teachings. It could also simply be reputation bias. It is also important to note that the patient demographics at Delek are predominated by Tibetans, but that local Indians (and foreigners) are also treated.

Hospice Palliative Care

Preamble

Chapter three “Is it Suicide?” Ritualized and Medicalized End-of-life Practices: South

Asian ritual practices of fasting and Immobilization at the End-of-life (Jain sallekhanā and

Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards touched on hospice palliative care in the context of ritual death, but the topic will be more thoroughly explored in this section. Palliative care and hospice are often conflated or used interchangeably. Both can occur in specific locations, such as on a hospital unit or within a freestanding building. Both can also be provided as an outreach service wherever people are dying, such as in the home or on the street. Some give them as distinct in some areas of practice, such as the U.S. National Library of

Medicine:

Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. Hospice care is usually offered only when the person is expected to live 6 months or less.619

Although this holds up when thinking of outpatients with terminal illnesses who are still quite active in daily life and receiving treatments such as chemo and radiation therapies while labeled

619 U.S. National Library of Medicine 2017

222 as “palliative,” it collapses when we consider palliative care units that would have as admission requirements the stoppage of active medical treatment coupled with a certain limited lifespan prognosis. As mentioned earlier, I will be using the standard of some Canadian organizations which keep the terms together.

The World Health Organization (WHO) describes palliative care as

an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.620

The WHO elaborates further on palliative care by stating that it

provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.621

It is noteworthy that palliative care can actually improve a person’s health status, as I have seen in the clinical setting with people being discharged home from palliative care units or people thinking about MAiD and then changing their mind once their pain is finally brought under control.

Historically, people have of course been caring for the dying since time immemorial but the formalizing of end-of-life care happened in stages:

The word ‘hospice’ was first used from the 4th century when Christian orders welcomed travellers, the sick and those in many kinds of need. It was first applied to the care of dying patients by Mme Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in

620 WHO 2017 621 WHO 2017

223

1842. The name was next introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St Joseph's Hospice in Hackney, London (1905).622

The person considered the founder of the modern hospice movement was inspired by her work at

St. Joseph’s as well as at St Luke's Hospital (Home for the Dying Poor founded in 1893),623 also in London:

Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice - St. Christopher’s Hospice - in a residential suburb of London. Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care. This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today.624

Canada in the thirties saw a move from home to hospital with an increasing medicalization of death, and it is safe to say that there is a contemporary move of EOL care back to the home and some impressive programs aimed at serving the homeless, such as Palliative Education and Care for the Homeless (PEACH) in Toronto. In India, “[t]he hospice and palliative care movement…started tentatively in the mid-1980s... From the 1990s onwards, there was a significant increase in the momentum of development of hospice and palliative care provision.”625 The authors elaborate further:

In India, the earliest facilities to deliver palliative care within cancer centers were established…in the late 1980s and the early 1990s. Palliative Care was initiated in Gujarat in 1980s with the opening of a pain clinic and palliative care service…[in] a Regional Cancer Centre in Western India. One of the important steps in the history of palliative care development in India was also…[the] forming of Indian Association of Palliative Care (IAPC) [in 1994].626

622 National Association of Hospice Fundraisers (NAHF) 2017 623 NAHF 2017 624 National Hospice and Palliative Care Organization, date n/a 625 Khosla et al. 2012 626 Khosla et al. 2012

224

The first hospice was Shanti Avedna Sadan in Bandra (West Mumbai, Maharashtra) founded

“[i]n 1986…[by] Professor D’Souza.”627 The second was the Holy Cross Hospice located two states down the south-west coast, mentioned earlier with Sister Cicily’s reporting on pain management and which I will elaborate on my experience there in the next section.

In addition to college training as a Health Care Aide, I also received college certification in multidisciplinary palliative care. Over my years as a bedside caregiver, I had the opportunity to work at both Casey House Hospice and the St. Michael’s Hospital palliative care unit, in addition to caring for dying patients in many other settings such as units dedicated to general internal medicine, haematology, oncology, infectious disease, geriatrics, stroke, emergency, cardiovascular/neuro-trauma/medical-surgical intensive care and so on. I would say that the majority of my clinical ethics case consults are for people at the end of life, in all hospital settings. I have long had major concerns with the difficulties and varying quality of EOL care provision in settings not dedicated to the care of the dying. In critical care, for example, there is scarcity of space, high costs, restricted visitation, noisy environments, and at times a reduced engagement by staff after futility of the curative trajectory is established. As I have mentioned earlier, one of my ongoing hopes for this research is for it to be helpful not only in caring for

South Asians but also for it to be of practical benefit wherever EOL care is being given, not just formally designated EOL settings since people die in all medical environments, at home and even on the street.

Informant Perspectives on Hospice Palliative Care

Interviews and Analysis

Dr. Tenzin Desel spoke to hospice palliative care exposure in Dharamsala: “Many elderly patients with terminal illness have not heard of hospice or palliative care, but

627 Khosla et al. 2012

225 children/grandchildren have some idea. It’s mixed, when family comes the patient doesn’t know, but the caretaker does.”628 To gauge exposure to hospice and palliative care, I asked all informants who engaged in the questionnaire two multiple choice questions each about hospice and palliative care:629 whether they had heard of them to some extent and, if so, how they had heard of them. Sources of hearing about hospice palliative care varied, from friends, fellow

HCPs, in their education or training, and various media. The Muslim calligrapher, Thoufeek P.

Zakriya, told me that he had just seen a “comedy programme which explained a few years back about palliative care unit/old age home/hospice. It was unknown to our culture but now it is so common. The actor that talked about it was Mukesh (a Keralan).”630 Some had heard of “end-of- life care,” but the informants predominantly had not heard of either hospice or palliative care.

One of my respondents, Dr. Shugan Jain of the International School for Jain Studies, spoke of a religious environment in end-of-life care, such as the Mukti Bhavan in Varanasi discussed in chapter three on ritual death, having a pain reducing effect on the dying person:

One feels useless in a nursing home. It is best to be in special zones, with ambiance, and go to pilgrimage places with reasonable medical care, with time spent contemplating, and go peacefully. Kashi Muktidham for example, people know they won’t come back. Rooms for religious activities are good, one is free to eat and do what you want, other pilgrims come and go, one is living in the world. It is more religious than in the city where there is rushing and so on. A place where one is motivated to enjoy, like a painkiller, and prepare for after- death. This is my idea of hospice, which is better than home.631

I asked what Shugan to clarify what he meant by a religious hospice being “like painkiller”:

Suffering. MD can give pain meds like morphine, and we don’t feel anything. Similarly when we go to a holy place, we become engrossed, have less bodily pain, and enjoy spiritual power more. For example in Varanasi, they have rooms which are meant for people who come to stay and perform religious activities. So you can go and stay. You are free to eat what you want, to do what you want, and people keep coming and going. So you

628 DSL-041815-BMD-45 629 See Appendix A (section on chapter four) for full versions of the questions and possible responses, and Appendix B figure 24 for graph and statistical analysis 630 C-020915-M-028 631 ND-111014-JPHD-002

226

live in the world. But the environment is more religious, the feeling of religion in the city might not be there. One wants to go to a place where you are motivated, and can enjoy. If you take it in another way: it’s like medicine, like a painkiller. That you start accepting that death is inevitable and then the world after death. You start preparing for that, and go to a place like that. Like a pilgrim place. If you talk of hospice that’s what I have in mind. Which is better than the home. Suppose I’m suffering. So what will the doctor do? Either he can give me an injection of a painkiller like morphine or something so that I don’t feel the sensation of pain. Ok? Similarly, when I go to a holy place, then I get mentally so engrossed with the religious activities that I experience bodily pain less and start enjoying the spiritual power more. That’s why I say it is like painkiller.632

Shugan, when asked whether he would want hospice palliative care, was unsure and stated: “It is not suicide. For the family, who hope to prolong life, it is doing something to minimize pain.”633

When asked if hospice palliative care units are where people die, he strongly agreed “but it’s bad. Condemned. You die before being dead!”634 Clearly Shugan sees religious hospice as ideal, and regular hospice as the worst context within which to die. He is not the only informant to have such criticism. When Sunrendra was asked the same question, he replied that there “should be no place marked for death. Even if it is a public service, you know you’re going to die. The person should not know they are going somewhere to die, it’s traumatic for the common person.

It’s painful for the person to know.”635 One physician whom I met with in his parents apartment in Jaipur had spent a great deal of time in the UK, Dr. Vinay Bothra, when asked if his patients would want to have hospice palliative care stated that it “may be thought of as abandonment.”636

A Professor Emiretus in Buddhist and Jain Studies, Prof. Kamala Jain, was one of only three female Jain informants and someone I had met five years prior when she taught a class for the

International Summer School in Jain Studies. Never married, we met in her apartment where she lives alone but we were served cookies and tea by a young male attendant. At one point she

632 ND-111014-JPHD-002 633 ND-111014-JPHD-002 634 ND-111014-JPHD-002 635 J-112614-J-008 636 J-111914-JMDNA-005

227 showed me the tattered book which contained her doctoral research in Buddhist Studies. When asked whether hospice palliative care means giving up, she said “intellectually, yes.”637 One

Christian informant in Kerala stated that “if they know they are dying, they go faster.”638

Mr. Dolma Kyab, the informant from the bakery introduced earlier, also speaks of the importance for himself of an environment conducive to religious practice at the end of life:

A peaceful place where meditation is not disturbed. Rather than being at home, I prefer being in a cave. I want to die through meditation, not at home. I’m not just repeating texts, but I really want to practice, be alone, concentrate on mental/spiritual development, away from wordly things. I can’t do this now, I have so many responsibilities. I want to go and practice alone now but the kids are too young. I want to do something spiritual (not just renounce).639

Although Kyab made it clear that the normative Buddhist tradition is not prompting his wish, one such Buddhist text which speaks of dying in a solitary setting is the Bodhisattvacharyavatara (A

Guide to the Bodhisattva’s Way of Life) of eighth-century Indian scholar-monk Arya Shantideva.

This is an excerpt from chapter eight on meditation:

34. Until the time comes for this body To be supported by four pall-bearers While the worldly (stand around) stricken with grief, Until then I shall retire to the forest.

35. Befriending no one and begrudging no one, My body will dwell alone in solitude. If I am already counted as a dead man, When I die there will be no mourners.

36. And as there will be no one around To disturb me with their , Thus there will be no one to distracted me From my recollection of the Buddha.

37. Therefore I shall dwell alone, Happy and contented with few difficulties, In very joyful and beautiful forests,

637 D-020415-J-026 638 C-021015-C-029 639 DSL-040615-B-40

228

Pacifying all distractions.640

Despite the emphasis on the community context of Jain sallekhanā in chapter three “Is it

Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian ritual practices of fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical

Assistance in Dying (MAiD) Safeguards, in Jain texts also we see examples of social isolation at death for the purposes of dedicated practice, such as in the Kalpa Sutra, a hagiography of the founders whose date ranges by about seven hundred years between the time of the author (mid-

300 BCE) and the time of writing (fourth century CE).641 For example, by this text Mahavira was

“all alone and without a second person”642 at the time of his passing during the rainy season, and interestingly was undergoing a fast of food only every three days and not the unlimited fast of sallekhanā - something debated within the tradition since many Jains presume that Mahavira necessarily underwent sallekhanā. Although remote locations were chosen for the location of their passing, such as mountain tops, some of the other Jain founders such as the first, Rishabha

(Adinath), and the two immediately prior to Mahavira, Neminath and Parshvanath, were surrounded by tens of thousands of monks.643

I was told about the Holy Cross Hospice in Perumpadappu by a Christian informant.

When I asked her if hospice palliative care units are places for people to die she said this:

They don’t know. Most of their money is spent on treatment and finally they land in these places. The Sisters take care, prepare for and have a happy death there…it’s for anybody! People need to have someone as a bystander with them. Most go there because they have no money, I’m not sure about those with no bystanders. Even in hospice they keep them with other people, behind privacy screens, and people talk to them. As long as they live they want to live, but if they know they are dying they go faster. There’s time to reconcile.644

640 Bachelor, date n/a: 43 641 Lalwani 1979: ix 642 Lalwani 1979: 76 643 Lalwani 1979: 106, Jacobi 1884 644 C-021015-C-029

229

This made me eager to visit and it was only about a twenty-five minute drive from where we were staying in Fort Cochin, Kerala. The head nun and nurse Sister Cicily, from a Roman

Catholic order, kindly agreed to an interview with us, despite us showing up at the doorstep unannounced. With an infectious smile which lit up her spectacled face, she wore sandals and a small silver cross around her neck over an entirely white habit, including the belt and headpiece which wrapped around the hair-line and hung down back. We met with her first in a room near the entrance off of the lobby. I asked the nun what the local opinion of the hospice was, and if there was any resistance to their operations: “People are scared, but now much improved. People think once they come they will go…this is the fear…but it’s slowly getting better.”645 The website for the Diocese of Cochin describes the hospice in a very endearing way:

You will be astonished to see such a Hospice in a picturesque place. A kilometer away from the bus stop, the environment is calm with lots of trees. The Hospice has a beautiful garden near the entrance. Holy Cross Hospice mainly takes care of cancer patients, especially in their end stages. They provide shelter, food, medicines and other necessities absolutely free of cost. A dedicated team of nuns co-ordinates the functions of this Hospice. Patients ranging from children to elderly are taken care of irrespective of caste, creed, gender etc.646

I can attest to the beauty of the grounds, with an abundance of space, surrounded by palm and other trees and located right on the water. The buildings are also spacious, enormous and impressively well maintained. Not only did Sister Cicily agree to meet with my wife and I, but she also gave us a tour of the facility and invited us to meet with some residents and their families. After our interview, we set out to see the space. At the reception desk was a volunteer in a long blue dress and shorn hair who Sister Cicily introduced us to as their longest-standing resident who, despite having health issues bringing them to the end of life, is so active that she is able to happily perform regular duties. The first ever hospice, Shanti Avedna Sadan in Mumbai,

645 C-021015-C-029 646 Diocese of Cochin 2015

230 have similar cases of palliative clients who do very well and yet decide to remain: “We have some patients who are well enough to return home even if they are not cancer free. But they want to continue living here because it is peaceful and they get a good quality of care,” said one of the volunteers.”647 Muslim calligrapher Thoufeek, when asked if hospice palliative care units are places for people to die, stated that “some people get better.”648 All meals are cooked on-site, a source of pride for Sister Cicily in their attempts to create a home-like atmosphere with home- made food. There are common areas on each floor with shrines and where we observed a group in prayer. Sister Cicily reports that “every day eleven a.m. prayer together…five-thirty p.m. rosary, six forty-five p.m. Holy Mass. People can come to church, they can hear it even if they cannot move. People are free to do as they wish, if they have a non-Christian source of strength.”649 My wife and I, long-standing hospital workers with a great respect for privacy, were very skittish when Sister Cicily invited us into the resident areas. At capacity the hospice can accommodate fifty people, but, she told us, clientele ordinarily hovers around twelve to fifteen.

Long hallways, mirrored by side for gender segregation, has individual units separated by curtains, but there are some private rooms available especially if the person will die imminently.

We resisted coming with Sister Cicily as she invited us onto one of the wards, telling her that we didn’t wish to disturb anyone. She waved off our concerns and said that the residents and families really appreciate visitors. In fact, some of the online mentions of the hospice I had found in advance were encourageing people to come and visit. After taking the nun’s lead, sure enough we found that the residents and families warmly welcomed us and wanted to chat, proving our privacy worries to be overextended. One adorable female resident was eager to tell us about the painful mass on her leg that prevented her from ambulating. Another person we met in a private

647 Iyer 2011 648 C-020915-M-028 649 C-021815-C-31

231 room was surrounded by a beaming family, and they told us of their loved-one’s story and how they all were doing. Unexpectedly meeting the hospice clients was very precious and unforgettable. We saw the Chapel from its balcony, quite large, beautiful and mostly wood. A large conference room hosts education events. Outdoor balconies offer beautiful views of the sea and surrounding palm trees. There is a room with a large statue of Mother Mary dedicated to post-mortem bathing, wrapping and viewing. Adjacent is the mortuary which can hold several bodies and is located at a back exit where a vehicle can easily pick up for transport. It is a very impressive facility which I have spoken of frequently in public since that visit.

As for palliating in hospital, in the Tibetan context I asked Dr. Desel if there are there any differences between the type of end-of-life care one would receive at home versus in hospital. He said that those who are in hospital “feel chig sempa lho lho,650 but having nurses and doctors around, and not only healthcare workers but more family, they feel reassured.”651 The Tibetan nurse said that “RN and physicians talked about doing palliative care more and more in hospital.

People in the community are asking more about palliative care rather than just assuming it needs to be done at home.”652 Primary biomedical physician to His Holiness the Dalai Lama, Dr.

Tseten Dorji Sadutshang, also had some thoughts on hospice palliative care in India in general, at their hospital and in the community:

In India, the whole level of care of hospice and palliative care is very new, pretty non- existent. There must be places that provide this. Hospitals tend to discharge when they can’t do anything. These people cannot access the level of care they need at home, there is a huge vacuum. This place serves like both a hospital and hospice, we also provide this. In the home, there is no special training. If people want to die at home, then they go. We make sure the person is seen sometime, to know what is going on, to check them out.

650 Tibetan Wylie: chig sems pa lhod lhod. Translates as “a relaxed mind,” with sems pa being “mental activity (Valby 2011),” and lhod lhod as “relaxing (Yeshe 2011).” 651 DSL-041815-BMD-45 652 DSL-042915-RNNA-50

232

NGOs, Tibet Charity also does it…home care providers…they do hygiene, blood pressure, basic medical stuff, vitals, injections…to some extent.653

Keralan Muslim calligrapher Thoufeek had much to say about the differences between EOL care in the home versus in hospital:

The hospital attendant is always busy working, and may not give the same attention to people, and is not as good as a family member. Maybe the opposite (hospital better than family), but this depends on the character of the patient: if a very good person, even if sick they can be good to caregivers and get better care. People in hospice might have some feeling that they want food from home but there might be some restrictions: no spice, oil. Caregivers might make it for them following their diet and with permission of the institution and family. Some places say no outside food is allowed. Here people don’t care about this, they are happy if outside food comes in.654

Another Keralan, Larvin Sharon, was my sole transgender informant and who grew up Christian in Kerala. An entertainer, I met her at the restaurant she worked at and when we met at another restaurant on her recommendation, she came in a blue sequin dress. Larvin seemed to attract some attention since while we spoke about her experiences, which included being of the “third gender” in a country that only recently had given them legal recognition while also recriminalizing homosexuality,655 several men came over and handed her their cards likely on the presumption that she was for hire as a sex-worker. We spoke about this and the challenges that come with the strong associations that many make between people who are transgendered and

653 DSL-040715-BMD-41 654 C-020915-M-028 655 Things have changed dramatically for the LGBTQ communities in India since this interview and the first draft of this study: “In a historic decision, India's Supreme Court has ruled that gay sex is no longer a criminal offence. The ruling overturns a 2013 judgement that upheld a colonial-era law, known as section 377, under which gay sex is categorised as an "unnatural offence". The court has now ruled discrimination on the basis of sexual orientation is a fundamental violation of rights... What is section 377? It is a 157-year-old colonial-era law which criminalises certain sexual acts as "unnatural offences" that are punishable by a 10-year jail term. The law punishes, in its own words, "carnal intercourse against the order of nature with any man, woman or animal". While the statute criminalises all anal and oral sex, it has largely affected same-sex relationships. Human rights groups say police have used the statute to harass and abuse members of the LGBT community… How did we get to this point? It's been a tortuous route. A bid to repeal section 377 was initiated in 2001 and was batted between court and government until 2009, when the Delhi High Court ruled in favour of decriminalisation. Several political, social and religious groups then mobilised to restore the law and in 2013 the Supreme Court struck down the High Court ruling. Anti-section 377 activists then submitted a "curative petition" - a formal request to review an earlier court order perceived as a "miscarriage of justice" - and in 2016 the Supreme Court decided to revisit its ruling (BBC News 2018).”

233 the sex trade. Larvin strongly encouraged me to share her story656 and had this to say: “If a person is going to die, they need a peaceful life. Whether sick or not, this is more important: to love, to care. A hospital can’t give this atmosphere to a person. Maybe hospice is a good place, that kind of place is good if they do a good job.”657

Summary

Some informants had heard of “end-of-life care,” but most indicated that they had not heard of either hospice or palliative care and there were indications that such a type of dedicated care for the dying is not currently prevalent in India. Several informants expressed both esteem and a preference for religious hospice or an environment conducive to religious practice while dying. There was some emphasis on being in undistracted isolation, something supported by some Buddhist and Jain texts. More informants, though, were similarly averse to ordinary hospice palliative care settings with the thought that it can negatively impact the dying person to know they are in a place dedicated to dying. Even one head of a hospice shared this view, even though they simultaneously see the benefits of the hospice itself as long as a person can slowly become acclimatized to the idea. Some Tibetans in Dharamsala felt that interest in and actually palliating people in hospital is on the rise, and informants from both north and south India mentioned that palliating in hospital might be better than at home because of the supports of trained staff.

Medical Assistance in Dying (MAiD): South Asian Religious Views

Preamble

Lastly we have this section dedicated to MAiD. Although not something I set out to discuss explicitly with my informants while in the field, some informants did speak to this

656 So influential was Larvin that I almost immediately made plans for a post-doc research study based in India on third gender experiences navigating healthcare systems. 657 C-021615-CNA-30.

234 contemporary practice of intentionally hastening death with medications under specific and narrow conditions. Mainly, though, I feel obligated to advance the discourse on a procedure which has forever altered the Canadian medical landscape by including religious perspectives on

MAiD from the Indic traditions which have a unique focus on non-violence (ahiṃsā), and which we could say emphasize the sanctity of life as the monotheistic religions do but backed by unique logic. That religious voices are lacking in local MAiD discourse is shown by the call by the Law

Commission of Ontario, a law reform organization, for consultation with religious representatives in the summer of 2017 on faith and the law in the last stages of life. I was invited to this roundtable and the discussions included the topic of MAiD, and I will below share some of my thoughts on this discussion such as the lack of attention paid to the potential moral consequences of those who perform MAiD and the tension between views on MAiD with regard to its new status as a legal entitlement for some versus its moral and ethical permissibility or impermissibility.

I entered into the discipline of clinical ethics soon after returning from the field, and with this I was also thrust into a post-Carter Canadian medical landscape in which there was a tremendous amount of focus on integrating this new service into hospitals willing to offer it, as well as wrangling around institutions and groups who refuse to offer the procedure out of conscientious objection. With the Carter decision and the cascade of events that followed it also came a lot of anxiety at all levels of our health care system: staff in the front-lines needing education as to its implications on their practice; institutional leadership similarly needing system-level education; local, provincial and federal leadership also have relied on various disciplines, including ethics, for recommendations on how to best co-ordinate and oversee services. Discourse has been nuanced by the fact that some groups still oppose the practice, and

235 that such detractors come from both religious and secular contexts. Among the faith-based institutions, no Catholic facilities offer MAiD but Jewish institutions are varied, some do and some do not. In a secular example, palliative care groups are varied as well as seen simply by looking at how they define such care:

The Ontario Palliative Care Network defines palliative care differently from the provincial association which represents hospices and palliative care providers. The association for the hospices says palliative care "neither hastens death nor prolongs life," while the government agency's definition remains open to medical aid in dying by calling it an "approach that aims to relieve suffering and improve the quality of living and dying.” Hospice Palliative Care Ontario's definition is taken from the World Health Organization. The province's definition is based on 2002 guidelines of the Canadian Hospice Palliative Care Association.658

I would say that a disproportionate amount of our work-life in ethics was taken up with MAiD in the few years following Carter, mostly with policy development and education, both in faith- based and non-faith-based hospitals.

Indian High Court Judge and legal commentator Kannan gives a succinct legal history of

MAiD:

The organized movement for legalization of euthanasia commenced in England in 1935, when C. Killick Millard founded the Voluntary Euthanasia Legislation Society (later called the Euthanasia Society). The society’s bill was defeated in the House of Lords in 1936, as was a motion on the same subject in the House of Lords in 1950. In the US the Euthanasia Society of America was founded in 1938. The first countries to legalize euthanasia were the Netherlands in 2001 and Belgium in 2002. In 1997, Oregon became the first state in the US to decriminalize physician-.659

In Canada, MAiD milestones began with the Rodriguez case:

In 1993, the Supreme Court of Canada heard the case of Sue Rodriguez, a 42-year-old woman from BC with ALS. Ms. Rodriguez wanted a physician to help her die before her illness completely paralyzed her, and she asked the Court to strike down section 241(b) of the Criminal Code, which makes aiding or abetting suicide a criminal offence. Ms. Rodriguez argued that the law violated the Charter of Rights and Freedoms, specifically sections 7 (the right to life, liberty, and security of the person), 12 (protection against cruel and unusual punishment), and 15 (the right to equality). The Court ruled against Ms.

658 Swan 2017: 4 659 Kannan 2014: 115

236

Rodriguez 5-4. The majority opinion agreed that a prohibition on assisted suicide was indeed a violation of Ms. Rodriguez’s autonomy, and caused her pain and suffering in violation of her security of the person. However, it was constitutional insofar as it was in line with the ‘principles of fundamental justice’ – that is, the prohibition preserved the state’s interests in protecting life and vulnerable individuals.660

There have been criminal proceedings against physicians for prescribing lethal doses of medications, such as cases in 1998 and 2007.661 Quebec’s own legislation came next: “The Act

Respecting End-of-Life Care was passed on June 5, 2014, and assented to on June 10, 2014. The provisions of the Act…came into force on December 10, 2015.”662 The Carter decision came down between the assent and enactment of Quebec’s Act:

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code would need to change to satisfy the Canadian Charter of Rights and Freedoms. The parts that prohibited medical assistance in dying would no longer be valid. The Supreme Court gave the government until June 6, 2016, to create a new law.663

Ironically, both people at the centre of their respective landmark cases that eventually brought about the decriminalization of MAiD would not qualify for it under current legislation as

Rodriguez suffered from degenerative spinal stenosis and Carter from amyotrophic lateral sclerosis (ALS), neither of which being terminal illnesses nor having foreseeable death prognoses. A Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying was struck with a “mandate…to provide non-binding advice to participating Provincial-Territorial

Ministers of Health and Justice on issues related to physician-assisted dying,”664 and submitted its final report on November 30, 2015. Between the Carter ruling and enactment of new federal legislation, Bill C-14, people outside of Quebec could request MAiD but it was required that it go through the courts, the first of which taking place in Alberta in March, 2016. Ontario passed

660 Bakewell 2016 661 Bakewell 2016 662 Gouvernement du Québec 2017 663 Government of Canada 2017 664 Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying 2015

237 its own legislation on May 9, 2017 which had four main purposes: protecting decedents’ benefits; protecting clinicians against liability; protecting the privacy of providers; and Coroner oversight.665 That same month the province created a Care Coordination Service (CCS) “open to both clinicians (doctors and nurse practitioners) and the public, allowing patients to self-refer if they are interested in finding out about MAID as an option for their end-of-life care (Weiss

2017).”

There has been much discussion of MAiD in this study already, mainly in the context of safeguards and oversight as potential guidance for sallekhanā. This section will look at how

MAiD might be viewed through South Asian religious lenses. We might ask: would a Hindu,

Buddhist or Jain ever request MAiD?

Informant Perspectives on MAiD

Interviews and Analysis

When I asked my first informant, Sunil, if hospice palliative care causes people to die before their time, he said: “Lord Yama controls! Cannot die before our time!”666 He is talking here of death personified, found in the various Indic religious traditions. Earlier we looked at how Sunil explains experiences based on some combination of or interaction with both divine will and karma, but here it is not clear if he is landing with one or the other or both. It is also not clear if by his estimation agents are able to alter their lifespan through countermeasures such as purification or even supplication. Yama as the Lord of Death in Buddhist contexts is still intimately bound with karma, with some depictions of Yama as “judging” beings by physically counting past positive and negative deeds. Death is also subdivided in Buddhist thought, such as by Buddhaghosha, into “timely” and “untimely” types. The former would be death upon the

665 Ministry of Health and Long-Term Care 2017 666 ND-110814-H-001

238 exhaustion of the karma responsible for the lifespan, and the latter would be the interruption of such karma by some other karma such as killing karma resulting in an accident that causes death.

I asked Sri Sushil Kumar Vaidya-ji, an Āyurveda physician in the Pink City of Jaipur, what is death and with the help of his brother interpreting, said: “three kinds: if I am killed, by suicide, and the end of pran.667 We take it for granted. Life is controlled by God, and depends on karma theory.”668 This interview was unusual since I was unable to conduct it in Hindi and Dr.

Kumar’s brother was mostly answering on his behalf and both of their command of English was limited. That said, Dr. Kumar paid close attention to the conversation and interrupted a few times to correct his brother and add details. In this case, the mention of G-d might well be an artifact from the brother since typically there is no such monotheistic concept in Jainism. However, I have heard from some Jains that when they use the word “G-d” in the Jain context, they are referring to the founders or Jinas. 669 Such beings achieve omniscience before death

(kevalajñāna670), and after their passing are thought of as going to a designated realm that is totally and perpetually disconnected to beings and the rest of cyclic existence, the Siddha

Loka.671 It is unlikely in this case that “G-d” is referring to a “Jina” since Jinas do not control the existence of beings. They are omniscient but not omnipotent. Fascinatingly, here we again have someone who sees divine and karmic processes interplaying in the lives of beings.

While discussing hospice palliative care, Sunil specifically mentioned “physician assisted death.”672 He was the only person to specifically speak of MAiD but many, however, did discuss suicide in various ways.

667 Prāṇ in Hindi is prāṇa in Sanskrit. 668 J-112614-JND-007 669 Sanskrit for “victor (Williams 2008: 421).” 670 Sanskrit for “the highest possible knowledge (Williams 2008: 310),” often called “omniscience.” 671 Sanskrit for “the world of the [accomplished] (Williams 2008: 1215).” 672 ND-110814-H-001

239

One informant who I spent a great deal of time with while in Jaipur was Saleem Saleem, a Muslim who cooked at the guest-house I stayed at. Always smiling, Saleem was very helpful not only by keeping me fed with delicious puri sabji,673 but also in helping me with my Hindi and to get the lay of the land upon my arrival. Before my departure after living there for two months, Saleem let me use his kitchen to cook French toast for himself, the owner and a couple of other staff since my in-laws had sent me a small container of Canadian maple syrup. On the day I left, after taking pictures with everyone, Saleem generously gave me a beautiful statue of

Śrī Saraswatī Devi674 to give to my wife. I will never forget Saleem as he fed me both with food and warmth during my first lengthy stay at a field-site. When asked what death is, he replied:

“Tension and suicide from no money, maybe government not help. Mind think “maybe I am dying, I’ll be free”…he thinks this! Natural death is good, Allah gave this. Nothing happens, maybe next life.”675 When asked about end-of-life care, he talked more about suicide:

Some have tension and commit suicide: train, bus, hanging from fan. A doctor cannot help them. In a family, everyone helps. If you have no money, then you sell your house to pay for medical care. Old people have less tension: forty days after death family cleans the house, and give special food to the poor on behalf of the deceased. This is important.676

Saleem is clearly very concerned with circumstances which can lead to suicide, such as financial difficulties. As part of my daily media scanning in hardcopy and online Indian newspapers, every day had multiple articles about farmers who tragically killed themselves because of being in insurmountable debt. Saleem also speaks of the importance of dying naturally from a Muslim perspective, but then immediately after seems to be referencing reincarnation. There are discussions of reincarnation in some sects of mystical Judaism, and I would say hints of it in the

673 One of my favourite Indian dishes consisting of deep fried bread with curried vegetables. 674 Śrī is a high honorific and Saraswatī is Sanskrit for the “[n]ame of the goddess of eloquence and learning (Williams 2008: 1182).” A goddess which appears in Hinduism and Jainism as associated with both music and wisdom, and in Buddhism sometimes thought of as the consort to the Buddha of Wisdom, Manjushi/Manjughosha. 675 J-111714-M-004 676 J-111714-M-004

240

Gospels (such as when disciples are asked by “who do they say I am?” and one reply is that he is John the Baptist returned), but I am unclear on there being any opinions on reincarnation in the various branches of Islam. It could also be that by “next life” Saleem could be speaking of an “afterlife” and not rebirth on this plane of existence. Newspaper editor

Hitendra also mentioned self-killing when asked what death is: “some from mental illness/pressures commit suicide. Death comes in many forms.”677 He jibes with Saleem on there being “pressures” but adds mental health interferences as another factor that can result in suicide.

A translator at the LTWA, Mr. Tsering Norbu, said this when asked if religion would affect his decisions at the end-of-life:

Yes, whether we can afford the treatment or not, if we have a mentally very sound viewpoint then this can help with mentally preparing to face problems more easily. If one cannot prepare mentally to face problems, then there is the danger of taking suicide and other things. Even if one has very serious physical problems, if one stays mentally strong then physical problems are acceptable.678

“View” in Tibetan Buddhism often refers to one’s philosophical position, particularly with regard to the nature of reality, but the mental strength referred to here seems to be based on rationality and reasonableness as a means of being ready for tribulation. Kyab told two anecdotes when asked if accepting that you are going to die means you do not have faith:

There was a German man eighty years in age, and the doctor told him he was going to die in few months, then he took suicide. After I heard that news I met a Tibetan lady, an older one, chanting maṇi.679 “How many have you finished?” “Almost a billion. I don’t care if I

677 J-122414-H-020 678 DSL-040415-B-39 679 Sanskrit for “a jewel, gem, pearl (also figuratively), any ornament or amulet (Williams 2008: 774).” Here this is referring in short-form to the most popular mantra in Tibetan Buddhism, Om Mani Padme Hum, here rendered in Sankritized Tibetan but coming from Sanskrit seed syllables of the Buddha of Compassion (Tibetan: Chenrezig , Sanskrit: Avalokiteshvara). The mantra can be literally be translated as “Hail to the jewel in the lotus!” Some commentators say that this jewel is the Buddhanature, tathāgatagarbha from tathāgata which is an epithet for an enlightened being or “he who comes and goes in the same way [as the buddha-s who preceded him](Williams 2008: 433)”, combined with garbha or “womb (Williams 2008: 349).” Literally, then, “womb of enlightenment” or “womb of the thus-come/thus-gone.” This is the seed of potential in all beings to become enlightened.

241

finish that number or not, I am ready to go at any moment.” Her face was really beautiful. A billion maṇi is much nicer than a billion dollars.680 Here Kyab gives another cause for suicide, receiving an imminent death prognosis, and sets this against those who are prepared for death. We can add bad medical news to our informants’ list of suicide-triggers which includes financial trouble, mental illness, and various other difficulties captured by “tensions” and “pressures.”

There were informants who spoke to euthanasia directly, and all but one who mentioned it were from monotheistic traditions. When I asked Larvin whether hospice palliative care hastens death, she replied that “my great grandmother told me something about it. If people have no money and are very sick, if their condition is very bad then they euthanize them…it is everywhere.”681 Muslim calligrapher Thoufeek, when asked if he would want to live as long as possible if he had a terminal illness with severe pain, said that “our religion doesn’t favour mercy killing. With prayer, it is not allowed to pray to God to take one’s life. We can pray ‘if it is good for me, it is your decision, it is ok for me. If it is good from your side for me to die, please do it.’”682 Others had religious objections as well. A Christian informant was asked if religion would affect their decisions at the end-of-life, and responded: “Yes. I wouldn’t want anyone to take my life. I don’t believe in euthanasia.”683 Another of my few female informants was Dr. Reena R.

Nelson Anthikat, a Christian doctorate-holder in microbiology in Cochin, Kerala who also has a private clinic for shiatsu, Swedish tissue massage and reflexology. I remember meeting in the front area of her home, where she lives with her mother, and that we had to light some sticks to prevent the mosquitoes from attacking me. When I asked her who makes health care decisions, she shared that “also the Ministers in church have a say in euthanasia (life terminated

680 DSL-040615-B-40 681 C-021615-CNA-30 682 C-020915-M-028 683 C-021015-C-029

242 voluntarily). There are a lot of religious influences. For example, if someone is a vegetable or in a coma, the has inhibition to withdrawal, even if it is supported. It is considered mercy killing, and goes to the institutional human ethical committee.”684 So, Reena presents a local view of the position of the Catholic Church on withdrawal of life-sustaining treatment as a form of passive euthanasia since some forms of withdrawal are in fact actually permissible by

Catholic theology, such as ventilation when the burdens outweigh the benefits,685 but the removal of nutrition and hydration is still debated. Reena also mentions that an Ethics

Committee might get involved with such deliberations. In North America, in healthcare settings where there are ethicists, an ethics committee might be chaired by the ethicist and might weigh in on some exceptionally difficult cases but most would be fielded by the ethicist. The role of the committee, as with the committee I chair, would mainly be policy review and possibly some other systemic goals. For example, our committee hopes to strengthen relations between patients and families and their HCPs by improving health literacy of the public, such as with regard to advance directives and particularly common trouble spots such as orders around resuscitation.

We have plans to do this through various means of education such as conferences and newsletter articles, and possibly even a mobile team to support clinicians around resuscitation deliberations, as they can be particularly tough. Staff membership on ethics committees is ideally diverse and multidisciplinary, also including members of the community and/or patient representatives.

According to Judge Kannan, in India “[p]racticing euthanasia shall constitute unethical conduct.”686 He cites the Supreme Court of India on the distinctions between ‘active’ and

‘passive’ euthanasia from the case of Aruna Shanbaug who was ventilated for forty-two years while in a persistently vegetative state resulting from a sexual assault:

684 CPHD-022815-C-33 685 CHAC 2012 686 Kannan 2014: 113

243

The difference between “active” and “passive” euthanasia is that in active euthanasia something is done to end the patient’s life while in passive euthanasia, something is not done that would have preserved the patient’s life. Assisting patients with suicide comes close to performing an act of euthanasia. Active euthanasia generally involves the administration of some agent or procedure which the physician believes is warranted to end the patient’s life. Passive euthanasia consists of permitting a patient to die by withholding life-sustaining treatment. Passive euthanasia may take many forms.687

Although rare and legally laborious, Judge Kannan gives the legal requirements for withdrawing life sustaining treatment:

On specific occasion, the question of withdrawing supporting devices to sustain cardio- pulmonary function even after brain-death shall be decided only by a team of doctors and not merely by the treating physician alone… This team shall consist of the doctor in charge of the patient, the chief medical officer…, and a doctor nominated by the in-charge of the hospital.688

For MAiD, two clinician assessors are required and if after three clinician assessments there is still uncertainty, some institutions strike a committee which is fairly similar in structure and membership to the one mentioned above but for deciding on withdrawal.

At the first Indian hospice, Shanti Avedna Sadan in Mumbai, under the same Catholic order as Holy Cross, “one of the volunteers at the 100-bedded hospice” said that “[w]e have patients who have huge wounds or swellings. Some with oesophageal cancer are fed through a tube, there are some who have little tissue left on their faces. But we never think for a moment that euthanasia is an answer.”689

Not everyone I spoke to disagreed with euthanasia. I asked the Head of Research and

Translation at the LTWA, Dr. Chok Tenzin Monlam Peltsok, if those who believe in G-d would want everything done to keep them alive even if they had a terminal illness, to which he said “it is an individual thing. For example, a poor family may have to pay a lot of money, then mercy

687 Kannan 2014: 114 688 Kannan 2014: 113 689 Iyer 2011

244 killing is not a bad thing.”690 He adds the economic burdens on families for medical care as a consideration for euthanasia.

Lastly, I asked CTA Department of Health Joint Secretary Thutop Namgyal if he would want to live as long as with a terminal illness even if he had to be on life support or a breathing machine, and he said this:

It depends, because normally cancer patients want to live as long as possible, to live a normal life. The nature of the illness causes them to die slowly, it kills them slowly. The patient themselves want to die sometimes, when the body is not responsive, they no longer want to live when they look at their body which has become sick and helpless. They make up their mind that they don’t want to live longer, they might feel like that. At some point cancer itself kills the person, slowly the tumour goes around the body and stops the breathing eventually. To be very honest every patient wants to live longer, nobody wants to die. The Buddhist point of view: a longer life allows for earning merit/good karma. When young we don’t feel we need good karma…we’re healthy, happy, and don’t find this necessary. As the years pass, like examinations at the end of the year, in the middle of the year we are relaxed but as the end comes near, we need more days for the exam. Same thing goes for us. We should practice religion, earn good merits and take care of our health. Religion and science should go hand in hand, be parallel. We don’t do that. We feel health is because of our age, as the years pass health gives us problems, and if we didn’t learn much about religion we need more days. At that point it is very late.691

I told Thutop how much I appreciated his exam analogy, that as with an exam, when we approach the end of life we increasingly scramble to prepare. He mentions that when the body doesn’t function the way it did and people become dependent on the care of others as a result of illness, some in this state might not want to live anymore.

Summary

In summary, only one informant spoke of MAiD by name but also denied that there could be any interferences with the timeliness of death. Some informants spoke of lifespans being influenced by interactions between divine will and karma. Others spoke of suicide arising from

690 DSL-032615-BPHD-35 691 DSL-032715-B-36

245 various pressures such as poverty, as well as mental illness or poor prognoses. One seemed to speak of strong reasoning as a way to deal with life difficulties and counteract the causes leading to suicide. Of the five informants who discussed euthanasia, all but one were from monotheistic traditions, mostly Christian and mostly opposed to it. Lastly, although legally in India there is a distinction made between active and passive euthanasia, with the former being disallowed, the latter however can be pursued but rarely and only by way of an expert committee of physicians.

Collateral perspectives on MAiD

This section will explore collateral perspectives on MAiD in Hinduism, Jainism and

Buddhism from such sources as newspaper media and religious texts. The material dealing with

Buddhism will be more robust and include some other discussions, since I have been attempting to engage with some members of Buddhist communities on the topic.

Hinduism

According to Canadian religious studies professor at McGill University Katherine Young, voluntary death in Hinduism started with a concept in the Mahābhārata as found in “this death is

‘not willed’ (aniṣṭa 692 ),” 693 and was followed by “Indian vernacular languages with the compounds icchāmaraṇa694 and iṣṭamṛtyu695 (literally death that is willed or desired).”696 Among religious voluntary deaths, or mors voluntaria religiosa,697 there are various types found in

Hinduism: the Great Journey or walking in an auspicious direction until falling dead

692 Sanskrit for “unwished, undesirable, disadvantageous, unfavourable (Williams 2008: 30).” 693 Young 1989, MBh. 15.49.26 694 I was unable to locate this term in dictionaries. 695 I was unable to locate this term in dictionaries, 696 Young 1989: 75 697 Young 1989: 74

246

(mahāprasthāna);698 sacrificial self-immolation (agnipraveśa);699 drowning in rivers and ponds

(jalapraveśa);700 fasting to death (anaśana) on the banks of holy rivers;701 death while in meditation (samādhimaraṇa); “abstaining from food and awaiting the approach of death in a sitting posture (prāyopaveśana702);” by yogic manipulation of the breath and inner energies resulting in the projection of consciousness (utkrānti703); and the immolation of a widow on their husband’s funeral pyre (satī).704 The British outlawed both jalapraveśa in the early 1800s705 and satī in regional waves but completely in 1861 although, as with the prohibition of caste-based discrimination, a temple priest in Varanasi told Justice that for , “these things still go on.”706

Note the parallels with Jainism with the EOL fasting of anaśana, EOL fasting combined with posture in prāyopaveśana, and EOL meditation of samādhimaraṇa (the latter being a term acting as a synonym for sallekhanā), as discussed in chapter three “‘Is it Suicide?’ Ritualized and

Medicalized End-of-life Practices: South Asian ritual practices of fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD)

Safeguards”. Consciousness projection is shared with Buddhism with such practices as phowa707 in Tibetan Buddhism, distinct from tukdam but can be combined with it and other practices such

698 Śreyas gives “proceeding on an irrevocable last great journey (Śreyas 2007: 296)” for this Sanskrit term, and Williams gives “setting out on the great journey, departing this life, dying (Williams 2008: 797).” 699 Sanskrit for “entering the fire (Williams 2008: 5).” Williams also gives this as “self immolation of a widow on her husband's funeral pile” but because the phenomenon of self-immolation in general is not gendered in practice, I feel that this is better reserved for the term satī (see footnote 571) as both a grammatically female-gendered word and something practiced only by females. 700 Justice 1997: 44. I was unable to locate this term in dictionaries but the closest related terms I could find are jalapravāha for “current of water (spokensanskrit.org)” and veśa for “entrance (Williams 2008: 1019).” 701 Śreyas 2007: 296 702 Śreyas 2007: 300; Young 1989: 75 703 White 2009: 114. Williams translates this term as both “passing away, dying” and “going out (Williams 2008: 177),” and Apte translates it as “[t]he flight or passage of the soul (out of the body), death (Apte 1996).” Both of these align well with White’s explanation of the term. 704 One of the meanings of the Sanskrit is “a good and virtuous or faithful wife (especially applied in later use to the faithful wife [popularly called Suttee] who burns herself with her husband's corpse (Williams 2008: 1135).” 705 Justice 1997: 44 706 Justice 1997: 45 707 Tibetan Wylie: ‘pho ba. Meaning “the transference of consciousness (Yeshe 2011).”

247 as chöd 708 or “cutting” which has the practitioner visualizing offering their corpse for consumption to various categories of beings after the consciousness has been projected, merged with the nature of reality (śūnyatā709, emptiness) and appearing in the subtle form of a tantric deity. Despite overlapping terms and similar practice tropes, the practices of course would be framed quite differently in different traditions by way of the purposes, intentions and the inner contextualized aspects of the practices. We also can add “suicide by leaping from high places”710 to Hindu forms of self-willed death, such as from trees (tarupattana711), cliffs or mountaintops

(giripattana).712 The Hindu informants of ethnographers Justice and Parry713 “regard suicide either equivocally or as sanctioned by stiff spiritual penalties.”714 Jain scholar Śreyas states that

“Vedic and Brahminical traditions condemn suicide unequivocally but prescribe voluntary deaths

(samādhi) in a number of peaceful non-violent at not so peaceful and, at times quite violent ways.”715 Although from these sources there seems to be a tendency away from endorsement of suicide in Hinduism, religious voluntary deaths are treated very differently despite two being

708 Wylie: gcod. “Literally 'cutting.' A system of practices based on Prajnaparamita and set down by the Indian siddha Phadampa Sangye and the Tibetan female teacher Machig Labdrön for the purpose of cutting through the four Maras [which are “the mara of the aggregates…which symbolizes our clinging to forms, perceptions, and mental states as ‘real’; the mara of the destructive emotions…which symbolizes our addiction to habitual patterns of negative emotion; the mara of the Lord of Death…which symbolizes both death itself, which cuts short our precious human birth, and also our fear of change, impermanence, and death; and the mara of the sons of the gods…which symbolizes our craving for pleasure, convenience, and ‘peace’ (Rigpa Shedra 2017)”] and ego-clinging (Pellegrini 2011: RY).” 709 Śūnyatā is Sanskrit for “emptiness (Williams 2008: 1085)” and is often given in another form śūnya which is almost identical in being Sanskrit for “empty (Williams 2008: 1085).” This is a reference in to the Buddhist concept of “emptiness” (sometimes “voidness”) or the lack of inherent and independent existence of phenomena, including sentient beings, based on the logic of interdependent origination that things are dependent for their existence on causes, parts and mental imputation. 710 White 2009: 210 711 Śreyas 2007: 295. I have no Sanskrit dictionary collateral for this full term but taru means “tree (Williams 2008: 439)” and pattana means “town (Williams 2008: 582).” 712 Śreyas 2007: 295. I also have no Sanskrit dictionary collateral for this full term but giri means “coming from the mountains (Williams 2008: 355)” and pattana means “town (Williams 2008: 582).” 713 Parry 1981: 350 714 Justice 1997: 45 715 Śreyas 2007: 293-294

248

Box #9 banned, and regardless of half of those listed In southern India, relatives sometimes quietly kill their elders. above being active and the other half passive. Let The practice often begins with an oil bath. In some cases, the parent is sick and in pain. In us consider a Hindu who is deliberating MAiD others, experts say, relatives want to gain control of the estate. not for religious reasons but based on what I call January 15, 2013 By Mark Magnier, Los Angeles Times the four “I”s of eligibility: incurability,

INNAMREDIYARPATTI, India — Michael headed for work at a textile mill, leaving his intolerability, irreversibility (of decline), and wife, children and infirm mother at home in this impoverished part of southern India. When imminency (of death). Active and passive forms he returned a few hours later, his mother's body was propped up in a chair surrounded by of religious voluntary death appear to not be villagers and decorated with flowers, poisoned by his wife with a potion in a local form of categorically mercy killing known as thalaikoothal. distinguished in normative Hindu religious Three decades later, he harbors no ill will toward his wife. “My mother had been sick and discourse, although two active types have been in pain for 20 days and wasn't eating properly,” said Michael, 62, who like many southern Indians uses one name. “I was thinking of legislated against, and in Indian medical and legal doing it myself. It was time, and there wasn't enough food to go around.” practice the distinction between active and passive

Even as India debates the morality and legality euthanasia has previously been so miniscule as to of euthanasia, three districts in the southern state of Tamil Nadu have been quietly carrying make it moot. The very fact that withdrawal of out a homegrown version for decades, or centuries, depending on whom you ask. treatment are still referred to as “passive

The practice in one small corner of India has declined under the spotlight after a high-profile euthanasia” is telling. 2010 case and growing opposition from elderly rights groups, but dozens, even hundreds, of There are some sources that lend some cases of thalaikoothal, or “head pouring,” occur quietly each year, people say. strength to the possibility for MAiD to be

permissible for Hindus under certain circumstances. Some Shakta716 tantric sources give two among several types of impetus behind utkrānti as “failing powers, life crisis situations.”717 Although utkrānti is a religious type of

716 Shaktism focuses on female divine energy, or Shakti, as a cosmic force or in more relatable forms as goddesses. 717 White 2009: 116

249

Box #9a voluntary death which we might say straddles the (Magnier 2013 continued) 718 active and the passive, the four “I”s of MAiD “Some call it euthanasia,” said Rajeshwar Devarakonda, social protection head at eligibility might be captured under “failing HelpAge India, a civic group focused on elderly care. “Others call it .” powers” and “life crisis situations.” There is also

Although it can take various forms, a common the striking practice of lethal injection in Tamil approach is that once an elderly relative becomes seriously ill and the family can't afford to care for the person, a date is set. Often Nadu, thalaikoothal, which has obvious analogues relatives are called to say goodbye or even 719 participate. The victim is given an oil bath, a to MAiD. head massage perhaps involving cold water and an exceedingly large amount of green coconut In addition to there being variation in the milk, leading to death. means used when engaging in thalaikoothal,720 Reducing a sick or frail person's body temperature can bring on heart failure, said Dr. depending on which death is caused by heart or Raja Natrajan, a geriatrician, while drinking excessive liquids can induce renal failure. respiratory failures, there seems also to be much

In a variation, victims are force-fed cow's milk and their noses pinched shut - an act called variation in the impetus behind this practice “milk therapy” - resulting in “breathing problems,” said S. Gurusamy, a sociology ranging from sickness or terminal illness, pain, professor at the Gandhigram Rural Institute. inability to eat, incapacity, resource scarcity, Thalaikoothal - traditionally for those 50 and older who become incapacitated, although hastening death for estate control, feelings of younger people who become very ill are also targeted — is as natural as a birthday or worthlessness, and inability to withstand family wedding, some say. “It's just the cycle of life,” said Kalimuthu, 60, a Peraiyur village farmer with a white, receding hairline and a wispy pressure. I push against Prof. Gurusamy who, as mustache. quoted in the article, dualistically distinguishes

between something which is a family decision and something having moral considerations and consequences. They are not mutually exclusive and

718 Most utkrānti processes appear to be metaphysical and internal (and thus unobservable), such as the manipulation of inner energies and consciousness projection out of the crown chakra (or energy hub), but there are some processes that could be external and potentially observable such as the stoppage of breath and usage of mantras (although mantras can also be recited and visualized mentally). 719 Magnier 2013. See inset box #9 for full article. 720 Tamil

250

Box #9b there is something to be said about moral outcomes (Magnier 2013 continued) for those ushering their loved-ones into death. Despite community claims that it's used only in terminal cases, social acceptability has resulted Moral and legal consequences both would be in abuses, care experts said, as impatient family members “hurry things along” to gain control inflected, in my view, by the level of voluntariness of the estate, sometimes with the help of compliant doctors or quacks who substitute of the person receiving the substances, the intention poison-laced alcohol or pills for coconut milk.

“Nowadays, because of their assets, young of the person/people giving the substances, the people sometimes want thalaikoothal done even if it's just a cold or minor sickness,” said means used to cause death and the quality of the Elango Rajarathinam, Virudhunagar-based director of Elders for Elders Foundation. “Old death. people are definitely scared of this practice. You can see the stress on their faces.” I am very worried about any impediments to

Occasionally, those targeted get wind of it and voluntariness, be it from the side of the people flee. delivering the substances pressuring the elderly or Others just accept their fate, experts said, even requesting thalaikoothal, less because they're ready to die than because society makes them sick person, or from the side of the person who feel worthless. might receive thalaikoothal such as from cognitive Ponnusamy, 67, a pipe fitter in a green shirt and purple dhoti, a type of sarong, recently interferences, conscious or unconscious internalized suffered two heart attacks, leaving him worried about more than his ticker. social pressure, presumed lack of self-worth and so

“I trust my wife wouldn't think like that,” he on. Barriers to voluntariness could also be from a said, gazing over the infertile landscape at two bullocks with decoratively painted blue horns. “If my family tried thalaikoothal on me, I'd ask combination of both. Another distinction between why. If they didn't answer, I might resign myself to it.” types of euthanasia in addition to passive and

active, are non-voluntary meaning without express

consent, and involuntary meaning against the expressed wishes of the person. It appears as if

there are examples of every type: voluntary, non-voluntary and involuntary.

251

Box #9c Another earlier article 721 points to (Magnier 2013 continued)

The history of thalaikoothal is hazy, but some vulnerability of frail elderly in a very similar way say it started before the British Empire when a prince helped his ailing mother-in-law die as in the sallekhanā PIL case. Death here is given peacefully. Others suspect it began as recently as the 1950s, a response to a rising population as occurring after fevers and fits, which perhaps is and poor local economy. referring to seizures. This article is less nuanced as “India's very good at making up stories,” said Devarakonda. it only gives nefarious intentions of loved-ones. I

Underpinning thalaikoothal is a society that's have not been able to locate connections made seen extended families gradually replaced by nuclear families, placing less social value on the elderly. between thalaikoothal and religion, or any

Although women’s status in India is often low, theological framing at all, so despite Tamil Nadu men are more frequently the victims of thalaikoothal, experts said, in part because being predominantly Hindu it is unlikely that this assets are generally in their names, providing an incentive. Also, daughters-in-law who practice can inform our question of whether Hindus provide most elder care are reluctant to assist men, given social taboos. In addition, some would find MAiD permissible or not since perceive men’s housekeeping skills as limited in male-dominated India, leaving them seemingly dependent. thalaikoothal is something which has arisen in a

“An old man can't even make his own tea or very local context. As fascinating as it is take care of the grandchildren, while older women remain useful,” said Devarakonda. dangerously worrisome, despite a few rare cases

Many people feel they're just relieving the practice seems largely uncontested. someone's suffering, added Gurusamy, who sees thalaikoothal as more a family decision Getting a sense of what a Hindu might than a moral concern. think of MAiD is complicated by many factors

including the great variety within the tradition itself, since “Hinduism” was initially an ethno-

geographical term and does little to give coherence to adherents and their multiple faith groups.

Although suicide proper seems to not be favoured at all (despite its great prevalence motivated

mostly by poverty and debt), there is also great variation among the types of religious voluntary

deaths that have been accepted in the tradition. There are both active and passive types of

721 Deccan Chronicle 2010. See inset box #10 for full article.

252

Box #10 religious voluntary deaths and the initial After passive euthanasia, SC will now examine ‘living will’ enforcement of the ban on both jalapraveśa and Dhananjay Mahapatra | Oct 11, 2017 sati by the British continued to be legislated The Times of India HIGHLIGHTS against by post-colonial Indian judiciaries. More The Centre told in Supreme Court that it was yet to examine the pros and cons of a “living research needs to be done on this topic. will”. It might not be a good policy as the issue was far more complicated given the cultural, Jainism religious and legal systems in India. The court also said it needed to consider the possibility of Except for sallekhanā, Jainism is quite coercion or fraud by greedy relatives. NEW DELHI: More than six years after vocal and clear on its critique of all other forms of sanctioning passive euthanasia as a legitimate option to end lives of people in a permanent voluntary death as forms of violence. For vegetative state, the Supreme Court decided on Tuesday to examine the more complex concept example, a ninth-century Jain work by of a “living will” where removal of life support is authorised in case of an irreversible coma. entitled Ādi Purāṇa relates the story of the first

A “living will” is a document prepared by a Tīrthaṅkara 722 (or founder) Ṛṣabhadeva 723 and, person in a healthy state of mind specifying that if s/he slides into a vegetative state because according to American Indologist White, of an irreversible terminal illness, the debilitated existence should not be prolonged “eschews the term utkrānti in favour of prāya724.” with the help of life support systems or other medical interventions. Oxford’s second Boden Professor of Sanskrit, Sir

In such a case, relatives will be spared the Monier Monier-Williams,725 gives one translation agonising decision of removing life support and doctors will be guided solely by the “living of “prāya” as “departure from life, seeking death will”. In several cases, the reluctance to pull the plug on a loved one even when s/he is in a by fasting (as a religious or penitentiary vegetative state prolongs the pain of the 726 patient. act…)…to renounce life.” That

722 Sanskrit for “creating a passage through life (Williams 2008: 449),” or more commonly referred by Jains as a “ford-maker.” 723 Garg 1992: 167 724 White 2009: 114 725 Unsurprising for mid-late nineteenth-century Britain, both the benefactor of the professorship and Williams himself explicitly gave the purpose of “orientalist” scholarship as a way to more efficiently convert Indians to Christianity during the British Raj. 726 Williams 2008

253

Box #10a this term would be preferred over utkrānti is of no (Mahapatra 2017 continued) surprise in a Jain context not just because of the

Appearing for NGO Common Cause, advocate implication of fasting, but also since “the use of Prashant Bhushan said, “Right to life includes right to refuse medical intervention when a spells (mantras, vidyās, astras)...plays a board of doctors certifies that the person would not live without life support system. I am in prominent role in utkrānti as described in the favour of active euthanasia too. But living will is a corollary to passive euthanasia.” For the tantric texts...destructive spells...are directed by Centre, additional solicitor general P S Narasimha said the government was yet to the practitioner against his own body, in order to examine the pros and cons of a “living will”, which might not be a good policy as the issue sever its vital channels and destroy its vital was far more complicated given the cultural, religious and legal systems in India. organs.”727 These would be unacceptable means

Narasimha said the government had already of entering death for Jains, and even the wording accepted the SC ruling in the Aruna Shanbaug case on March 11, 2011. The SC had said that a such as “destroy” betrays its violence. As for the specific category of relatives could move the high court concerned to seek permission for intention behind utkrānti, one Shakta source passive euthanasia, i.e. withdrawal of life support system from a person in a permanent “invokes world-weariness, but other sources vegetative state. speak of failing powers, life crisis situations, the

desire to choose one’s time of death, or a simple

sense of closure.”728 As with the four “I”s MAiD eligibility criteria mentioned earlier, “failing

powers” and “life crisis situations” overlap with some of the sallekhanā criteria but the other

motivations would not jibe with Jain normative requisites for sallekhanā intention being

essentially neutral. Jain scholar Śreyas is accepting of one type of Hindu religious voluntary

death: “Mahāprasthāna…subsisting on water and air alone and walking on in an auspicious

direction until the end of one’s life…non-violent means.”729 He goes on to criticize other forms

727 White 2009: 115-116 728 White 2009: 116 729 Śreyas 2007: 297

254

Box #10b of Hindu religious voluntary death: “However, (Mahapatra 2017 continued) the means recommended such as self-

The SC had said such a request would be vetted immolation, drowning…are mostly violent and by a board of medical experts and thereafter the HC would go through the report before granting their spiritual benefit may be doubtful.”730 or refusing permission for passive euthanasia. The 1991 symposium on sallekhanā “There is constant advancement in medical science and who knows what a person thought explicitly touched on the topic of MAiD: today was incurable could be easily manageable in the distant future,” he said. When the scenario was stretched further and it was pointed out that medical complications can The court also said it needed to consider the be more severe than envisaged or encountered possibility of coercion or fraud by greedy in the ideal ascetic scenario, and asked whether relatives. Official sources said the draft bill on it would be acceptable to inject lethal poison to passive euthanasia was in a nascent stage and it bring on the impending death, the response was was possible that the “living will” concept could that under extreme conditions where the pain be added to the body of the legislation. and suffering is unendurable and not abating and ‘death is not able to enter the body’, then it The sources also said that in an overwhelming might be ethically proper to resort to this means. majority of cases, when the doctors lost hope of The qualification added at this point was that saving a patient, the relatives took them home both the ends and the means must remain, if not from hospital, thus signalling the administration identical, at least as integrated as possible. (The of passive euthanasia. principle of the consistency of means and end is intended here.) The guiding principle that no “There is no law that prevents a relative from untoward interference in the biological taking discharge of a patient,” a source said. constitution and processes of the individual is acceptable was reiterated. Understandably there The bench of Chief Justice Dipak Misra and was much apprehension when it was pressed Justices A K Sikri, A M Khanwilkar, D Y whether there could be justification for Chandrachud and Ashok Bhushan, too, faced a administering lethal poison at an early stage of dilemma in going through the exercise given the the development of, say, terminal illness or a inherent complications associated with the issue. debilitating condition, or administering it through a machine to patients who, although

suffering from some terminal condition, are not in intolerable pain and are otherwise fully conscious.731

I find this a surprising conclusion given the typically strict views on acceptable forms of death in

Jainism, but I keep in mind that the symposium group was not entirely representative and also

730 Śreyas 2007: 297 731 Bilimoria 1992: 347-48

255

Box #10c small in number. There also seems to be some (Mahapatra 2017 continued) inconsistency in the group allowing for MAiD

The bench admitted, “It is a very troubling issue. under rare and extreme conditions, and yet on its Let us see how far we can go.” It added, “To die peacefully without suffering is a right under heel still enforcing the “guiding principle that no Article 21. But one cannot commit suicide. However, one has a right to say while dying let untoward interference in the biological me not suffer (sic).” CJI Misra recalled that Mahabharata's Bheeshma was blessed with constitution and processes of the individual”732 “ichchha mrityu (the power to choose the time of one's death)”, and said a “living will” would which is impossible with MAiD as its purpose is relieve the relatives of taking the painful decision of advising doctors to withdraw life support from to stop biological processes. It is impressive, the patient. however, that in keeping with the Jain

anekantevada principle of seeing issues from all angles, the group did not entirely rule out the

possibility of MAiD being an ethical possibility under very narrow circumstances. So, we could

say that Jainism tends towards prohibition of MAiD but leaves it as not impossible.

Buddhism

Various Buddhist texts do not shy away from discussing suicide but two Vinaya

commentarial texts seem to be in tension with each other over the issue, under certain conditions.

The Samantapāsādikā is a lengthy commentary on the Vinaya by Buddhaghosa733 in the fifth

century, but other sources say that it was, rather, a collection compiled by the monk. The

Vinītavatthu is “related case law that describes similar cases and how they are to be judged.”734

The commentary below is from

Ven. Ajahn Brahmavamso’s Vinaya Notes [which] were largely written in the late 1970’s and early 1980’s. The work began at Wat Pa Nanachat in response to the absence of a

732 Bilimoria 1992: 347-48 733 Law 1997: 77 734 Heim 2014: 148

256

Vinaya commentary in English to support the monastic practice of the fledgling Western Sangha established there under the guidance of Ajahn Chah.735

The page goes on to say that Bhikkhu Brahmavamso and Bhikkhu Thanissaro, the commentary of the latter of which is quite influential and upon which I have relied since 2001, started to collaborate on Vinaya commentary but “differences of interpretation emerged” which made it impossible. Bhante736 Brahmavamso states that

the Samantapāsādikā categorically states that there is no pārājika for the bhikkhu who kills himself or has some obliging fellow kill on request. However, such an action, suicide, is an offence of dukkata according to the Vinītavatthu, but, according to the Samantapāsādikā when done for the appropriate reasons suicide is no offence at all. The Samantapāsādikā gives two examples: [1] A bhikkhu is chronically sick with little sign of recovery and he wishes to end his own life so that he will no longer be a burden on the bhikkhus who are nursing him - in this case suicide is appropriate. [2] A bhikkhu who is enlightened already becomes gravely ill with a painful disease from which he suspects he will not recover. As the disease is burdensome to him and he has nothing further to do, he thinks to end his life - in this case also suicide is appropriate (Of course, the authors here are merely describing the contents of the Samantapāsādikā, we are not giving advice; were these words our own and they persuaded such a bhikkhu to suicide, then we the authors would incur a pārājika.737

In both texts, suicide is not placed in the strongest category of monastic misdeeds, a parajika, which cannot be remedied through confession and penance and which leaves the person both without their former ordination vows and in excommunication from the order. In the

Vinītavatthu such an act is minor and would be within the second to last of the categories of faults in order of descending gravity, and is reparable through confession and penance.

Buddhaghosa’s examples of that would be acceptable both involve monastics with irremediable illnesses, one an ordinary monk and a burden on the community and the other having reached the highest state of development recognized in the Theravada traditions,

Arhatship. This entails liberation from suffering and no more births in cyclic existence. It is

735 Dhammikaweb 2018 736 The honorific for monks meaning “venerable Sir” in the Theravada traditions. 737 Brahmavamso: 27-28

257 worrisome to me that a monk with irreversible illness might choose death because of being a burden on the community as this is in tension with a vow that requires monastics to care for sick monks until they either get better or die. So, it is impermissible for monks to consider a sick monastic so burdensome that they abandon caring for them, but by Buddhaghosa’a allowance a sick monk might consider from their own side that caring for them is too burdensome for the order and choose to exit.

Examples of acceptable monastic suicides are very limited:

There are…instances where the Lord [Buddha] held the embracing of voluntary death by certain monks and lay followers, under extremely exceptional circumstances, as correct. The examples of Sītha, Sappadāsa, Godhika, Bhikṣu Vakkali Kalaputra and Bhikṣu Channa who were suffering from incurable diseases and embraced voluntary deaths prove this point. When Tathāgata Buddha came to know of the voluntary deaths of Bhikṣu Vakkali Kalaputra and Bhikṣu Channa, by use of a weapon, He held that they were free of any blemish and that both the monks had attained nirvāṇa.738

There are also examples from the Songs of the Elders, Therigāthā for nuns and Theragāthā for monks, a collection of poems from the earliest monastic disciples of the Buddha. The stories of

Nahātaka Muni and Megharāj from the Theragāthā show them both consulting with the Buddha over their decisions to end their lives due to intractable pain or incurable illness.739 As

Brahmavamso cautions above against seeing such special allowances as advice, I also give caution against seeing examples of suicide that are given as acceptable in Buddhist texts as setting a standard for suicide being acceptable in Buddhism in general. This may seem an obvious extension to avoid, but as I mentioned in chapter three, there are scholars who take the rare and exceptional cases in scripture as proof of suicide being permissible in Buddhist discipline. Another scholar speaks to the cased-based nature of determining the acceptability of certain suicides:

738 Śreyas 20017: 343 739 Śreyas 20017: 220

258

While the Buddha is not critical of either Godhika or Vakkali, it is only in the case of Channa that he appears to make an unequivocal statement exonerating suicide…to Keown it comes down to the difference between condoning an act and exonerating someone who acts. The Buddha was not making a generalised statement about the acceptability of suicide; he was exonerating Channa in this particular case. This weakens the case of those claiming that suicide amongst arahants is acceptable, and accords with the previous two cases.740

“Exoneration” is a misplaced term here, I think, especially with regard to someone deceased since the Buddha is not thought of as being able to change the results coming from the actions of others, but rather, is able to see them clearly. In life, the Buddha or senior monastics could determine whether an act of a monastic warrants countermeasures or exoneration, but after death the Buddha as omniscient tracks how beings do post-mortem and the Buddha announcing such results to the community would be seen as a statement of fact and not a judgment. But Keown’s distinction between a general acceptance of an act and specific exemptions is key. Specific exemptions for those whose actions are in accord with their realizations and do not disrupt their spiritual progress, such as for Arhats or those on the cusp of Arhatship, do not equal a blanket exemption.

What about helping another to die? A section of the Vinaya called the “Vinita-vatthu, or

Precedents…for the major rules” lists “various cases related to the rule and giving verdicts as to what penalty, if any, they entail.”741 It “includes a case in which bhikkhus, out of compassion for an ill friend, hasten his death and thus incur the full offense under this [major] rule [of not killing]. This shows that impulse and motive are irrelevant in defining the factor of intention here.”742 Also, simply “[r]ecommending means of euthanasia” is considered a breach of the highest order equivalent with killing a human, if the recommendation results in death:

740 Attwood 2004 741 Bhikkhu, Thanissaro 2013a: 16 742 Bhikkhu, Thanissaro 2013a: 78

259

The Vinita-vatthu includes a case of a criminal who has just been punished by having his hands and feet cut off. A bhikkhu asks the man’s relatives, ‘Do you want him to die? Then make him drink buttermilk (§) (!).’ The relatives follow the bhikkhu’s recommendation, the man dies, and the bhikkhu incurs a parajika.743

Even merely praising death is prohibited:

Describing the advantages of dying…can include berating a sick person (“Why do you keep hanging on to life like this? Don’t you realize what a burden you are to others?”) or simply telling a person of the miseries of life or the bliss of dying and going to heaven in such a way that he/she might feel inspired to commit suicide or simply pine away to death. The Vinita-vatthu also includes under this type of act any statements that a nurse might make out of compassion to shorten the miseries of an illness by encouraging a patient to let go of life so as not to dawdle in the face of death. Thus, the Commentary notes, a bhikkhu talking to a dying patient should be very circumspect in how he chooses his words, focusing not on how to speed up the dying process but on how to inspire the patient… The Vinita-vatthu…contains a number of stories in which bhikkhus comfort a dying bhikkhu by asking him to reflect on what he has attained through the practice, which was apparently a common way of encouraging a dying bhikkhu to focus his thoughts on the best object possible… In all of these cases, the advice is aimed not at precipitating death but at inspiring calm and insight.744

Thanissaro Bhikkhu in his commentary specifically addresses assisted suicide:

The word satthaharaka745 is most commonly used in the Canon in the context of an assisted suicide, in which a person who wants to die but cannot bring himself to commit suicide arranges for someone else, a satthaharaka, to kill him. Thus the inclusion of this phrase in the rule means that a bhikkhu intent on dying who arranges for someone else to do the job for him would incur all the derived offenses leading up to the actual death. At present, this would rule out trying to get a doctor to arrange an assisted suicide for oneself. If one were to help arrange an assisted suicide for someone else, the case would come under commanding… telling another person to commit a murder…as would the case of arranging an assassin for someone else not at that person’s request.746

This, however, might mean that the second type of MAiD in which the prescribing of the lethal drug is done by a clinician but the administration by the patient themselves could potentially be permissible, especially when coupled with the person having realizations. That a monastic cannot be the one administering MAiD seems clear, but is reinforced by Brahmavamso commentary:

743 Bhikkhu, Thanissaro 2013a: 79 744 Bhikkhu, Thanissaro 2013a: 81-82 745 “[T]he Pali word for assassin is literally ‘knife-carrier’ (satthaharaka)...which, according to the...Vibhanga...Commentary, is a general term for a murderous weapon (Bhikkhu, Thanissaro 2013a: 81).” 746 Bhikkhu, Thanissaro 2013a: 79, 81

260

“when the bhikkhu is of the opinion that the poison is lethal and he administers it to someone causing their death, then he incurs a pārājika.”747 It is fascinating to me that both Hippocrates in

Greece and the Buddha in India had strong positions against the use of poison, in the same era of the 5th century BCE. Kannan cites Quinn748, an American Jesuit Priest, lawyer and law professor who says that “[d]octors who participate in assisted suicide intend their patients to die by their own acts, which is intentional killing.”749 It is often said in Buddhist discourse that the outcomes of actions by those holding vows of discipline are more powerful than those who do not hold vows, for better or for worse. Thus, it could be said that for a physician who does not hold vows of discipline, the negative results of intentional killing would be less. However, physicians necessarily take the oath of Hippocrates which explicitly forbids the giving of poisons.

Regardless, Buddhist karmic theory would have intentional killing by unrealized beings necessarily result in killing karma which can shortens lifespans, and this would be amplified both by harmful intentions and the presence of non-harm commitments on the mind-stream.

There is further textual support against a monastic doing anything which results in someone’s death, even in the capacity of caregiver:

If…a bhikkhu caring for a patient acts in a way to cut off the patient’s life faculty, that would fulfill the factor of effort here. The Vinita-vatthu makes this point with a set of cases in which bhikkhus give patients treatments that are actually harmful for the patients. In the instances where the other factors for an offense are present - the bhikkhus mean to kill the patient, and the patient dies - the bhikkhus incur the full offense. In another set of cases, a bhikkhu feeling pity for a friend in severe pain praises the pleasures that await him after death. Again, in the instances where the bhikkhu intends to bring about the patient’s death and the patient dies, the bhikkhu incurs a parajika.750

747 Brahmavamso, date n/s: 30 748 Quinn SJ, Kevin P. “Assisted Suicide and Equal Protection: In Defense of the Distinction Between Killing and Letting Die.” Issues Legal & Medical 13 (1997): 135. 749 Kannan 2014: 163 750 Thanissaro Bhikkhu 2013a: 83

261

Lastly, despite determining in chapter three that withdrawing of overly burdensome treatment is not a fault by Buddhist discipline, as passive omission and not active hastening of death, Bhante

Thanissaro cautions against VSED by the person themselves:

…one should keep in mind his comment in SN 35.87 that the only blameless death is an arahant’s. If, lacking that attainment, one chooses to refuse food when ill to speed up one’s death, one should be heedful of the risks that death and rebirth can involve.751

This, however, does not preclude VSED. As with Jain sallekhanā, if the intention of the person is to remove the burdens of nutrition and hydration but without intending to hasten death, in accord with the rule of double-effect, the negative results would be mitigated.

From looking closely at Pali Vinaya commentary, we can make some general conclusions. The terminating of a life, or having someone else terminate a life including one’s own, even out of compassionate concern for the suffering of another is equated with the act killing a human. Since Buddhist monastics and laypeople have the same vow to abstain from killing, I would say that this would apply equally as a prohibition for ordained and lay Buddhists but perhaps would merely be a recommendation rather than a prohibition for laypeople who do not have precepts. This would preclude the type of MAiD where someone else administers the lethal medication: a vow-holding Buddhist should not administer the drugs, nor have someone administer them to themselves. Since there are rare exceptions of blameless suicides by realized beings, combined with the fact that the second type of MAiD involves the person administering the lethal medications to themselves, it is not impossible for there to be a case in which a

Buddhist engages in MAiD permissibly and without untoward effects. Again, this is not a generality but a remote and case-specific possibility.

Some of us from the University of Toronto’s Department for the Study of Religion had the fortune of remarkable access to H.H. the 17th Gyalwang Karmapa Ogyen Trinley Dorje during

751 Thanissaro Bhikkhu 2013a: 86

262 his premier visit to Canada in the summer of 2017.752 His Holiness the Karmapa is the religious leader of the Karma Kargyu tradition of Tibetan Buddhism, one whose influence I imagine will only grow as H.H. the Dalai Lama ages, and belongs to the first lineage of formally recognized reincarnated Lamas dating back to the twelfth century. He fled Tibet for Dharamsala through

Nepal on the cusp of the millennium when he was only fourteen years of age. I had the fortune to first meet His Holiness during a teaching and foreign visitors audience at Gyuto Monastery in

Sidhbari near Dharamsala a couple of years after his arrival. I found him very stern, like his predecessor, and a bit withdrawn. Granted, he was still very young, new to India and away from his homeland while continuing his intensive traditional studies. He has since become increasingly involved in environmentalism. Our first meeting with him was in the Chancellor’s

Office connected to Convocation Hall where his first public talk would take place. A close colleague and myself were in blue and white academic robes as the bearers of the gonfalons, and we first all lined up for a picture after he greeted each of us with handshakes and hellos. I had on my wrist a very large rosary that a prisoner wanted me to have blessed. His Holiness was very relaxed and personable, often making jokes to break the tension of the awkwardness in the room.

He sat with the professors who asked several of us to tell His Holiness about our research. In response to hearing about this study, he nodded and said “people need a lot of help when they are dying.”753 Before the recessional after the address, we shared a smile on stage and afterwards before leaving the venue His Holiness made a point to firmly shake the hands of us two boys in blue and white. The next day was a small roundtable discussion of only about thirty people on the topic of the environment. There were representatives also from the departments of the

752 Much thanks to my supervisor Prof. Frances Garrett, and Prof. Amanda Goodman, for kindly including me in the two U of T events. 753 Dorje May 31, 2017

263 environment, Indigenous studies and Buddhist pastoral education. I had the privilege to ask a question and chose to ask about MAiD:

Sean Hillman: Your Holiness, thank you so much for coming and please come back again and again. We also met before,754 in Dharamsala, we were both fifteen years younger! [crowd laughter] I have a health-related question, if that’s okay. With regard to the environment, I am deeply concerned with how we dispose of medical waste, how the environment affects human health…we all know that without proper water we have very poor health outcomes…and also I’m concerned with the environmental conditions that are ideal for the dying process, and ecologically-sensitive ways of disposing of dead bodies… But this question is with regard to non-harm in the hospital setting. I’m a clinical ethicist which means that I help with decision-making, with patients and families and teams at the end-of-life [and other difficult decision-making moments]. We have a practice that is new in Canada as of last year, it’s not new around the world elsewhere,…called Medical Assistance in Dying where we give a series of drugs [His Holiness nods in understanding] to end a life…so You’re familiar with it. It’s different than other forms of helping people at the end of life. There’s something called palliative sedation where we give drugs to help with pain and symptoms, and we know that it might hasten death but it’s not intended. [In] this practice, the intention is there to end a life. So I just wonder if You have any thoughts about it as a practice, and also for people like myself and other health care professionals that are supporting the people that are doing this practice emotionally, non-judgmentally, not discouraging people or encouraging people but just helping them because it’s a very difficult thing for the [health care] practitioners to do too. Any boundaries that You might suggest, especially for those who [conscientiously] object, like myself and in the Catholic tradition and the Jewish tradition, some of the other sanctity of life traditions…any sort of boundaries in work in this regard. Thank you.

H.H. the 17th Gyalwang Karmapa Ogyen Trinley Dorje (live translation by Tyler Dewar): From a traditional perspective, I think the…Buddhist perspective would be fairly clear. For example, in the teachings on the Bodhisattva practice of generosity, it very clearly indicates what is permissible to give to others as a practice of generosity and what is not permissible to give to others as a practice of generosity. And so the teachings say you can give virtually anything to someone else with the motivation to help them, but the Buddha said it’s not permissible to give them poison, because that would harm them and could separate them from their life-force faculty, and weapons…it’s not permissible to give weapons as generosity. So, if we look in a direct way and literal way at the content of teachings like that, then I think it’s difficult to allow room for medically assisted dying as an accepted practice. However, there are other meta-considerations from the Buddhist perspective that we might also explore to modify that conclusion or, at least, develop a more refined appreciation of it. And that is the Buddha also encouraged that in some

754 Another participant, U of T Indigenous Studies faculty member Jenny Blackbird, earlier mentioned that His Holiness and she had met when she was young and that she never forgot it. She then tearfully expressed her gratitude at meeting yet again as she thought they would never have the opportunity to do so.

264

instances we need to weigh the balances between what is proscribed versus what is needed. Sometimes, the Buddha said, in rare cases what is needed can outweigh the importance of what is proscribed, proscriptions. So, for example, killing. That’s a proscribed action. But we have the famous story from the Jataka tales, the previous lifetimes of the Buddha, where the would-be Buddha or the Bodhisattva who was to become the Buddha in the future, was the captain of a ship and there were five hundred human beings on this ship and one member of the crew, or a passenger on the ship, had an intention to murder everyone on the ship and make off with all of the loot, all of the riches that the ship contained. The…Captain, the future Buddha,… through His then very well developed capacity for higher cognitive power saw this person’s intention…and decided the only way to prevent this act would be to kill that person. So He actually chose to do that even though He knew that He would get some negative karmic result through performing the act of killing…He still said “that would be better, that…proscription would be outweighed by the benefit, or what is needed on the part of those five hundred other people. And so that’s one instance where what is needed is outweighed by what is barred or prohibited. But, generally speaking the Buddha said that these instances are rare, they don’t occur all the time, they’re not so common. And so with regard to this contemporary issue of medically assisted dying…there are some pretty powerful considerations against the practice from a traditional, doctrinal perspective, but then again as to the other considerations where what is needed might outweigh the traditional ethical proscription, or bars, I think more discussion and dialogue is needed. It’s hard to say…we can’t just say “it should be like this” or “it should not be like this.” But it’s important…for those who support the practice to come together with those who do not support the practice and exchange ideas and understanding to make sure that we clearly understand each other.755

Four days prior to the discussion with H.H. the Karmapa, I had correspondence by email with a hospital chaplain who is Buddhist and inquired about MAiD. He was asking in my role as an ethicist, knowing that I am also Buddhist. Below is what I wrote them:

I do not discuss my personal views on MAiD in the hospital setting, nor do I even discuss (much of) the fact that I work for a Catholic ethics service (sponsored by the Catholic Health Alliance of Canada) which objects to the practice. The reason is because I don't want my views nor the Catholic affiliation to detrimentally affect my consulting...such as with health care professionals thinking that perhaps because of these things I am somehow compromised. I morally object to MAiD, and vehemently so. However, I have no problem providing ethics support for patients and staff that are engaged in the practice, it does not amount to condoning MAiD and it is now a legal right for those meeting the criteria. However, as a centre, we are actually still figuring out the boundaries for Catholic ethics consulting around MAiD...my site is the only one of the 10 Ontario sites that we are contracted to that engages in it (of the few secular sites that we have)…

Since entering into clinical ethics about two years ago MAiD has taken up about 40% of our time...mostly in the area of education to staff. In the early days, after the Carter

755 Karmapa June 1, 2017

265

decision but before the legislation rolled out, I thought of writing a piece on MAiD from a Buddhist perspective but my main supervisor (and now my boss) advised against it as I was still a fellow and the idea of one person publishing their view on this hot topic might bring unwanted attention. I also suggested collaborating as a group with fellow Buddhists, monastics and academics at a conference on applied Buddhism but there was no uptake. In fact, when I mentioned my concerns with the fact that my wife (who is about to finish her program to become an NP) might engage in it (she is a big supporter of it), they laughed at me. I have a feeling that they didn't quite get what MAiD is, despite my attempts to make it clear.

Although I morally object to MAiD, I do not, however, object to withdrawal of treatment or palliative sedation under the proper conditions as they meet the requirements of the double-effect (mainly by way of having foreseeable but unintended negative consequences). MAiD does not. It is the intentional ending of a life. I have been in healthcare for two decades, mostly with dying patients, so I am not ignoring the difficulties at the end-of-life...most of my professional and academic life revolve around EOL concerns and addressing them (mainly focused on EOL decision-making). But I am strongly convinced that we can adequately deal with cases that would meet the MAiD criteria by all of our other palliative means. Those that request MAiD but do not meet the criteria, for whatever reason, usually go for palliative sedation with good effect. There is also Voluntary Stopping of Eating and Drinking, which I have been exploring for at least seven years particularly in the context of ritual death, which is also more morally justifiable than MAiD. One of the most concerning pieces of the MAiD legislation is that the 10 day reflection period can be sped up if the person is likely to lose capacity or die more imminently...so instead of them dying naturally we end their life. Many of the others who do not meet the criteria for MAiD die naturally. As well, we are the only jurisdiction on the planet that forces objecting MDs to make an effective referral.

Not many people that I know of are talking about the moral consequences of those performing the procedure, never mind for the person themselves. And in the Buddhist context, that would be a discussion about the karmic consequences. Yes, the intention of the administering practitioner may well be mixed with concern for the suffering of the person, which beneficially alters the karmic outcome, but there necessarily is the intention to cease that life and would produce some form of killing karma. Even if we discuss the gaps between the prescriptive and the descriptive, as with monks taking up arms, I cannot see how MAiD can be justified from a Buddhist perspective. Especially with someone who has some form of pratimoksha/non-harm vow. If you have some logic behind how it can turn out positively for all invloved, in the grand scheme of cyclic existence, pray tell. I suppose some high beings could engage in it under certain circumstances...such as those that are so advanced that they are beyond the law of cause and effect and can influence another's transmigration, thinking of stories such as the Tibetan Black Hat monk who killed a king with an arrow to prevent him from killing 500 people thus saving lives and the king from committing a strong negative deed (and even sending him to a Pure Land)...but that monk was a bodhisattva. Anyhow, the whole thing causes me an enormous amount of moral distress, and I think we have gone down a very dark path as a culture. I hope the legislation remains as narrow as it is (continuing to disallow it for: minors, those

266

whose request are not on the basis of a terminal illness and foreseeable demise, and advance directives). One thing I will leave with you is this: do you think marginalized people are requesting MAiD?

These are just some of my informal musings. I will be directly asking some of my teachers, high Tibetan Lamas (including H.H. the Karmapa who is visiting Toronto this week), in- person questions about MAiD from Buddhist perspectives and am very curious to see what their views are...and any boundaries for those who are proximal to the practice.756

It is clear to me now that I have been conflating two stories, that of the “liberation killing” of the

Tibetan king Langdarma and the previous life story of the Buddha on the ship, since this is the way the story had been presented to me by my first Buddhist teacher decades earlier.

Although in this correspondence I express my objection as vehement, I have since softened my stance and it continues to evolve. Thanks to the flexibility of H.H. the Karmapa’s perspective, and from a narrative ethical approach with the strict allowances given in the Vinaya for times when certain advanced practitioners having intolerable suffering at the end of life can hasten death without negative karmic and transmigratory consequences, for now I’ll land on a hesitancy towards the practice. However, it now seems to me too rigid to side with a total prohibition on MAiD for Buddhists.

Summary and MAiD Alternatives

Attempting to establish Hindu, Jain and Buddhist positions on MAiD is challenging and perhaps an impossible task. We have, though, gleaned much on how the traditions might approach this practice. Historically, we find many types of religious voluntary deaths in

Hinduism, including those that actively end life such as immolation, and those which are passive such as fasting. Although two active means of suicide, drowning and widow deaths, have been made illegal and suicide is largely frowned upon in Hinduism, some Shakta tantric sources give

756 Hillman May 27, 2017

267 conditions for yogic death which overlap somewhat both with the four “I”s of MAiD and the eligibility requirements of Jain sallekhanā. The “head pouring” practice in Tamil Nadu is a concerning and anomalous local practice with variety in both the means for and intention behind ending the lives of elderly community members that doesn’t seem to have any explicit Hindu inspiration. The relationship between Hinduism and MAiD requires more study. Jainism typically eschews all forms of voluntary death other than sallekhanā however, as given earlier, the 1991 sallekhanā symposium group which met in Varanasi left open rare circumstances for

Jains to undergo MAiD when considering people lingering with a prolonged dying process coupled with intolerable suffering, but they also hedged their position by requiring no biological interferences which would preclude MAiD. There is tension in Buddhist Vinaya sources around suicide, but there are also several textual precedents for sick realized masters who ended their lives without fault in discipline or untoward karmic results. Despite this, hastening another’s death, commissioning someone to do so, recommending means for euthanasia, and praising death are all prohibited in the Vinaya, and it was clarified that the intensity of the negative results would be dependent in part upon the vow-holding status of the Buddhist. However, MAiD can be administered by another or by the person themselves. Because of the textual tensions and rare case exemptions, along with the commentary from H.H. the Karmapa which encouraged against a hard and fast position, I have softened my view of MAiD from strong opposition to allowing for the possibility of a Buddhist to administer a lethal dose to themselves if meeting both MAiD and internal Buddhist eligibility criteria. The latter would involve some assessment of the development of the adherent, since scriptural exceptions are based on actual or imminent realizations.

268

Overall, the major Indic religious traditions all tend away from suicide but leave open a small amount of room for the possibility for MAiD by adherents under extraordinary circumstances.

Many MAiD detractors feel that the practice is a symptom of a lack of support for the dying and requests are, according to one outspoken Catholic nun and bioethicist, “a signal to review their pain and symptom control and their spiritual and emotional support.”757 There are even those who are not palliative who are requesting MAiD, demonstrating other unmet healthcare needs:

Some examples of patients who self-referred looking for medical assistance in death included a young man with recurrent attacks of gallstones and otherwise good health, who did not meet the criteria of having “intolerable suffering” and a “reasonably foreseeable death.” A woman with antibiotic-resistant bacteria on her skin also made a request, even though the bacteria were not causing any symptoms or threats to her health. Requests like these clearly reflect an underlying unmet need for medical attention; these patients should be redirected to their primary health care practitioner or, in some cases, to mental health services, not the limited pool of MAID experts who are already struggling to keep up with an ever-increasing case load. In the end, we usually tell people with ineligible requests that they should see their family doctor, and to call back should their circumstances change. We do not usually have any other organized supports available to offer them.758

Clearly MAiD as a last resort is misunderstood by many. In the debates over MAiD, some ask why such a course of action as “killing oneself by ingesting prescribed lethal medication”759 would be chosen when there are other means of achieving the same end but without the same ethical difficulties, such as palliative sedation or foregoing life-sustaining treatment. The

Canadian Society of Palliative Care Physicians Taskforce’s Framework for Continuous Palliative

Sedation Therapy in Canada found that “[c]orrectly practiced [palliative sedation] is an ethically and medically acceptable form of therapy” but one that “still generates controversy” with regard

757 Kenny 2015: 26 758 Weiss 2017 759 Lachman 2015: 56

269 to “its potential for misuse, or abuse as a form of covert euthanasia.”760 The taskforce also found

“evidence in the literature that physician fatigue and burnout can lead to an increased use of

CPST.”761 This EOL approach, which like MAiD also employs medication, is that which most often triggers RDE logic but, as shown above, is still fraught. As for foregoing medical interventions, for example, withdrawing mechanical ventilation by those that are vent-dependent entirely removes the need for MAiD. Whereas MAiD has an almost immediate effect and the cause of death is a drug overdose, palliative sedation or withdrawal of life-sustaining treatment can take much longer, from hours to days.

Conclusion

The chapter investigated three topics related to EOL care: pain management, hospice palliative care, and Medical Assistance in Dying with regard to South Asian religious adherents.

Informants spoke of opioid access variability by region, with better access in south India and systemic access improving from amendments to legislation regulating controlled substances.

They also listed non-pharmacological means of pain control, emphasized the need for institutional pain management support and gave pain management as a matter of life or death.

Tibetan study participants also spoke of pain thresholds and the importance of mental clarity at the time of death to assist with transmigration. Some gaps between informant reporting and actual practice in pain management at a Tibetan hospital were noted and behavioural pain assessment tools were suggested as a means to close this gap.

When discussing hospice palliative care, some respondents spoke of the importance of an environment conducive to religious practice at the end of life, as well as the relief felt by those

760 Dean et al 2012: 870 761 Dean et al 2012: 876

270 having institutional multidisciplinary support when dying. The south-western coastal Indian hospice of Holy Cross was described in great detail.

The pain management and hospice palliative care sections were supplemented by statistical data. Some of the significant gaps between non-HCPs and HCPs are that HCPs feel that their patients cannot afford pain medication, are unafraid of addiction, would want hospice palliative care but could not afford it, all of which contrasts the views of HCP respondents.

Among all the study cohorts, a predominance would prefer to die at home.

Lastly, in the section on MAiD some informants spoke of the factors influencing lifespans and discussed suicide as coming from various causes such as poverty, mental illness or poor prognoses. Monotheistic respondents were the most numerous in discussing euthanasia or mercy killing, and were also opposed to it. This section was supplemented by collateral material in an attempt to further glean how the major Indic religious traditions might approach MAiD, sources such as texts, newspaper media as well as recent conversations between myself and a couple of Buddhists, a major religious leader and a chaplain.

Although more research is needed, especially for Hinduism, for each of the major Indic religious traditions there is a general aversion to suicide but textual allowances for certain types of religious voluntary deaths, with Jainism having the most strict requirements and basically only accepting sallekhanā as permissible. A small group of Jains and scholars left open a small possibility for MAiD under extreme circumstances, and although two active forms of Hindu religious voluntary death are illegal and Buddhist discipline requiring not causing or having assistance in a hastened death, in both of these traditions there may be room for MAiD. For

Buddhists, though, it would likely be dependent on the spiritual development of the adherent and required that they administer the lethal dose to themselves.

271

CHAPTER 5: Conclusion “Mostly a Collaboration.” Highlights of Findings on End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents, and General Summary of Findings and Recommendations

This concluding chapter will be divided into two sections. Part one briefly summarizes the findings found in Appendix D on general end-of-life and personalized end-of-life decision- making, as well as the issue of the potential influence of religion on end-of-life decision- making.762 Part two is a general summary of findings and recommendations from the core chapters on blocking bad news, ritual death and EOL models of care.

Part 1: Highlights of Findings on End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents763

End-of-life Decision-making

With regard to EOL decision-making, informant data was generated from the questionnaire and open interview answers and addressed both the players and processes involved: who is involved, and how does it take place. When discussing the players in EOL decision-making, informants could choose variations from the triad of patient, family and healthcare providers and the issue was subdivided into who informants thought are typically involved in such conversations in general, and those that they would want involved in such decision-making for themselves.

762 In earlier drafts there was a fourth core chapter, but because of the enormous amount of data on these issues, which were actually the original impetus for the entire study in its conception before entering the field, it became unwieldy and also seemed to be more suited to a different style of prose. Although the main topical interests of the study participants resulted in what are the core chapters, I still hope that the full and unabridged summary of findings in Appendix C can be useful to scholars, formal and informal caregivers and other interested parties as applied to contexts in which there are decision-making moments, especially those that are potentially fraught. 763 This section will focus on end-of-life decisions making. However, Appendix C contains a full summary of findings on both healthcare and end-of-life decision-making.

272

Finding 1 - EOL decision-makers (general): When considering EOL decision-makers in general, informants thought that there is mostly collaboration between the patient, their family and healthcare providers. The next most popular configuration was that physicians make EOL decisions on behalf of the patient. This was followed by a tendency to think that the family and physician make EOL decisions together. Only the collaborative approach involves the patient in EOL decisions, the others being proxy decisions.

Finding 2 - EOL decision makers (personal): For themselves, informants most preferred autonomous EOL decision-making. This was followed by an equal preference for EOL decisions being made by the patient together with their family, or the doctor and the healthcare team making decisions by proxy, or collaboration between the patient, family and healthcare providers.

These findings are significant when considered with regard to doctor-centric approaches to medical decision-making in India historically, and evidence (such as that from malpractice suits) that autonomy is gaining increasing importance. In all decision-making configurations which involve negotiations between healthcare providers and the public (patients and families), we can harken back to the discussion in the introduction on transculturation. Save for those circumstances in which healthcare teams might make proxy decisions without patient or family involvement, EOL decision-making is done in groups involving at least two people and cultures

(healthcare and otherwise), for a specific purpose and for a limited amount of time. We could call these decision-making groups micro-level transient neocultures.

Finding 3 - EOL decision-making processes: When discussing processes of EOL decision-making, informants mainly emphasized wanting healthcare teams to contact family first; the importance of privacy; increased HCP involvement if the patient is alone; collaboration with HCP leadership; and using a personalized approach to care.

Informants were also asked to share personal preferences for the care they would want for themselves at the end of their own life, and asked about advance care planning documentation.

Finding 4 - EOL care preferences: Informants overall thought that comfort supersedes length of life. Informants also held that after brain-death, life-support and being medically maintained was not worthwhile for the sake of merely lengthening life. There was also a preference to be at home while dying.

273

Finding 5 - Advance Care Planning documentation: Few to no informants possess or see in their practice either advance care directives or documents appointing a decision- making representative (such as a Power of Attorney), but there was a close split between those who had heard of such documents and those who had not. Among non-HCPs, documents appointing a decision-making representative are better known than advance care directive documents.

Religion and End-of-life Decision-making

As a lead up to discussing the possible influences of religion on healthcare and EOL decision-making, informants spoke to their own religiosity with most identifying as either very religious or somewhat religious, and most indicating they attend a place or worship either daily or rarely or never, in equal numbers. Almost half said they engage in personal religious practice daily, and a quarter reported practicing more than once a day.

Finding 6 - Religion impacting EOL decision-making (individual): More than half of informants felt that religion does indeed influence people’s EOL decision-making in general.

There were too few answers on the topic of the influence of religion on the EOL decision-making of family members, but some felt that religion can actually have a negative impact on decision-making by the family of patients where strongly held beliefs are given more weight than medical findings and recommendations.

Finding 7 - Religion impacting EOL decision-making (HCPs): In verbal answers, almost half of informants felt that religion does not influence HCPs in healthcare and EOL decision-making, but informants were ambiguous on this matter in the questionnaire.

One of the most fascinating findings to come out of the interview analyses is an interpretive one, in that there was an enormous amount of variety in how informants understood what was meant by “decision-making,” and it being “influenced by religion.” Many times, informants discussed aspects of care that might not typically be included under “decision-

274 making” proper. Decisions related to treatments or placement after discharge and so on are so often emphasized in the clinical context, medical and bioethics literature as well as legislation, but the informants in this study captured different issues.

Finding 8 - How informants understood “EOL decision-making”: Informants in this study spent a great deal of time discussing such things as: the quality of care; creating an environment conducive to care goals; lifestyle; and emotional states to name but a few of their concerns.

Many informants seemed to deeply personalize questions related at all to religion, and what was understood by “influenced by religion” was also quite variable. Without telling informants, I thought that the question might address normative religious tenets entering into

EOL decision-making, such as at times when people from sanctity of life traditions want all medical interventions to preserve life at all costs. The study participants had their own ideas on this.

Finding 9 - How informants understood EOL decision-making being influenced by religion: Some informants took “influenced by religion” to mean such things as: how the person treats others; what actions they would conscientiously object to; religious interventions; motivation; positive emotions or concern towards patients; ability to endure difficulties (such as with patience or forbearance); reaping moral or karmic benefit; how to approach patients of different religious dispositions; how religion excludes medical science; discrimination or acceptance based on religion; requesting divine intercession in curing patients; the influence of patients’ religious views on HCPs; the presence or absence of religious advice within medical advice; HCPs’ quality as distinct from adherence to certain religion; and the ways in which religious practice, or even mere exposure, can be helpful to the person who is sick or dying.

Along with being unbound to any strict and enumerated categories given to them in questions, such as with EOL decision-maker configurations, this rich interpretation of the influence of religion is another example of how the informants in this study shared more of themselves and their perspectives by the flexible and creative way they answered questions.

275

Part 2:

General Summary of Findings and Recommendations764

To conclude this study, from its intended purpose as advocacy or public interest medical anthropology, this final section will give significant findings and recommendations for each chapter-based topic. As well, some additional guidance that perhaps does not warrant formal recommendations will be offered as suggestions.

Withholding, Delivering and Receiving Difficult Medical Information, or “bad news”

Hindu, Jain and Tibetan Buddhist adherent and HCP cohorts in this study all have those who feel that there are times when it is both justifiable and good practice to withhold certain types of healthcare information from patients at the end of life under certain conditions. Such sensitive information could include terminal diagnoses or imminent death prognoses. Informants shared that the sources for directing healthcare information away from the patient and towards the family first instead are threefold (the hospital circle-of-care triad): as done by the healthcare team as a matter of course, as requested by family members, and sometimes from the patient themselves.

Some medical and bioethics literature might suggest that any alterations to the process of disclosure, by omitting details on the nature of the patient’s current condition and prognostication, could interfere with a person being able or empowered to make a fully informed choice about a treatment or plan of care. North American regulatory documents use the threshold of serious harm (although left undefined) to determine whether certain medical information should be withheld or not. Moral philosophers, such as Hooker, asks those delivering medical information to not presume that because it is sensitive that it necessarily will harm the patient.

764 A list of all findings and recommendations can be found in Appendix E.

276

But in India, healthcare systems are influenced by UK medico-legal standards of “real consent” rather than “informed consent,” which places the onus on the patient to receive the information needed to consent to treatment rather than on the provider to deliver the required medical information. As well, there is a heavy weighting of “acceptable medical practice.” With these standards operating in tandem, practicing physicians in India appear to have much leeway in choosing what information they disclose or withhold.

As recipients or providers of healthcare in India, study informants have exposure to medical information sharing practices and shared their concerns with patients and families receiving sensitive news when someone is approaching the final phase of their life.

Finding 10 - Receiving difficult healthcare information: perceived detriments to patients: Multiple informants mentioned medical bad news potentially bringing worry to patients and causing health status decline.

Finding 11 - Receiving difficult healthcare information: perceived detriments to families: The main concern of informants who were concerned with families receiving medical bad news is the distress or worry it could cause them.

Informants, however, also mentioned that patients receiving sensitive news could potentially be helpful.

Finding 12 - Receiving difficult healthcare information: perceived benefits to patients: Multiple informants mentioned death-preparedness as the main benefit to receiving a poor diagnosis or grim prognosis.

Since requirements for clinical information sharing and the standards for justifying nondisclosure or under-disclosure are variable according to jurisdiction, some requests for withholding medical information by patients or their loved-ones who are South Asian religious adherents living outside of India might be more difficult to fulfill than others. In all circumstances, and as mentioned by some study informants and shored up by some religious texts, tact and timing are suggested when there is a need to share sensitive medical information.

277

Recommendation 1 – Ask the patient about their preferences for medical information sharing: Either as a preemptive strategy, or at least when it is unclear whether certain medical information should be shared with the patient or their loved-ones or not, it is recommended to ask the capable patient what types of information they would like to receive or not. To avoid undue distress, it is better to have such conversations early and strategically so there is not a presumption or inference that there already is bad news to share.

Ritual Deaths

Over time, there have been tensions in public and legal discourses on the Jain practice of voluntary fasting and immobilization, or sallekhanā, which takes place mostly as adherents are approaching the end of their lives. Although Jain communities have put forth much effort to protect the practice, through writing, protest and strategic gatherings of scholars, medical professionals, journalists and adherents, accusations of suicide and abetment have not ceased.

Rights language has neither satisfied the courts nor pacified detractors. What also has been ineffective in satisfying critics are emic assurances that those undergoing the practice necessarily meet both Jain standards of appropriateness, readiness and proper intention, and medico-legal standards of mental capacity, consent and voluntariness. As a public interest or advocacy medical anthropology study, concerns around protecting vulnerable elderly are to be taken seriously and in response some possible solutions are proposed herein. Recommendations of sallekhanā safeguards come at the request of some Jains themselves, and are shared with some other scholars and healthcare professionals who also reframe sallekhanā as a form of Voluntary

Stoppage of Eating and Drinking (VSED).

Recommendation 2 - Protecting sallekhanā voluntariness: The potential for pressure to not eat and drink before death, even coercion towards this, is a genuine concern whether real or perceived, intended or unintended, and must be put in check. To protect both hard and soft voluntariness (preventing external coercion and internal pressure), it is recommended that voluntariness should be tested in a formal manner. This can be done by a medical professional, or could well be done instead by a trained member of the Jain community in case this is more acceptable to members or leaders in the faith. The results

278

should be such that it can be reportable to a review body if such were to exist, a coroner if investigated or to a court if litigated.

Recommendation 3 - Assessing sallekhanā capacity: A mental capacity assessment for cadidates seeking to perform sallekhanā is recommended, both for laypeople and monastics, and frequent visits to the person undergoing sallekhanā as a way to constantly check both capacity and consent, and to allow for the person to change their mind. It would not be necessary for the person determining capacity to be a physician. Capacity determinations can potentially be performed by trained capacity assessors who are non- physician healthcare professionals, as is done is some jurisdictions. The results should be such that it can be reportable to a review body if such were to exist, a coroner if investigated or to a court if litigated.

There might be good reasons for such capacity assessors to belong to the Jain tradition, to put the candidate at ease and to have sensitivity to subtle communication cueing, but there may also be good reasons for these capacity assessors to not be Jain. There might be concern that a Jain who sees sallekhanā as auspicious and ideal in and of itself, regardless of voluntarinesss and capacity, might consciously or unconsciously compromise the integrity of their assessment. However, a standardized approach to capacity assessment, and post-assessment oversight and accountability, could be a way to mitigate this potential difficulty.

Recommendation 4 - Ensuring sallekhanā consenting: This is a strong recommendation against waiving consent for sallekhanā, or involuntary sallekhanā, under any circumstances. Further, substituted consent by proxy is strongly recommend against for people who are incapable from whatever cause, be it cognitive interferences, unconsciousness or otherwise.

Some further suggestions might provide more guidance. (a) Providing sufficient information:

To ensure a fully informed choice, it could be made a requirement for aspirants to be presented with all of their EOL options including the possibility of full support from medical and nursing professionals to assist with their pain and symptoms. There may well be creative ways to not over-medicalize this process, but most likely this information would be best delivered by those who are proposing and potentially providing such services. (b) Case Reviews: Oversight could be provided by way of case reviews led by an expert panel. Based on feedback from Jains in the

279 field, pre- or post-case reviews don’t have to take a legal form but could take the form of a third- party, quasi-judicial, interdisciplinary panel as is found is some jurisdictions. (c) Ensuring the stability of the wish: There are emic Jain processes between religious leaders and candidates to check for the appropriateness and ability of a candidate to enter into sallekhanā, which may include the candidate needing to prove the stability of their wish. I have not found explicit mention of this but, regardless, it is suggested to have a reflection period after the initial request to prevent the decision being made at one sitting. (d) Pain management options: Receiving pain medication at all might be seen by some as contrary to the sallekhanā vows, but there may be variation when the various routes of entry are considered as some bypass digestive processes.

Regardless, it is suggested to provide the option for those undergoing sallekhanā to have pain and symptom management, if so desired. (e) The Rule of Double-Effect (RDE): This logical approach might not be required if the recommendations and suggestions above are followed and successful. However, since the RDE is deployed in medical decision-making with regard to some interventions that cause moral distress, such as palliative sedation and pregnancy termination, and shares a deep concern with intention which is also crucial in sallekhanā candidacy determination and practice, it can be helpful both for the Jains involved as well as with satisfying detractors. With VSED in sallekhanā, the “good effect” could be seen as freedom from an overly burdensome life-sustaining measure and the “evil effect” terminal dehydration. Although locating, eliciting and expressing of intentions can be confounded by many factors, from a person’s lack of reflexivity to the reification of certain intentions over others, attempts to determine whether a candidate’s intention meets the emic Jain standards and passes the RDE could be included in capacity assessments. It is suggested that a collaborative approach between religious teachers and medical doctors can establish if a person has the intention for the evil

280 effect, terminal dehydration that would result in death. If they did not, the candidate would meet the conditions of the RDE in their particular case. (f) No pressure to stop eating: Since there can be religious expectations in India to reduce intake when nearing the end of life, including in hospices, it is a general suggestion (not reserved for sallekhanā alone) to limit circumstances in which there would be pressures on the dying to not eat. (g) Reducing publicity: Jain families and communities may wish to consider the potential negative impact on candidates and outsiders when making such events very public through advertising, adulation and celebration. Since there is improved reputation and status by association with someone who has undergone this esteemed practice, this can lead to candidates potentially compelling themselves to engage in the practice for the sake of their families rather than because they wish to from their own side, and even to families possibly pressuring candidates to enter sallekhanā for their personal gain of social capital. Reducing publicity can commensurately reduce such internal and external pressure on candidates to better protect their voluntariness and autonomy, and reduce causes for criticism by detractors.

Before concluding this section on ritual death with a comparison between Jain and

Buddhist approaches, here is a scriptural finding on VSED in Buddhist contexts.

Finding 13 - Buddhist discipline texts distinguish between active killing and withdrawal of medical treatment: Commentary on the Pali Vinaya shows that of the five components of rules of monastic conduct (intention, perception, object, effort, result), the factor of effort is missing in not providing a particular medical intervention. As well, intention with regard to inaction is made irrelevant by these discipline texts. Even refusing to provide any medical care to a fellow monastic is merely a breach of conduct and not a breach of precepts, a minor infraction requiring only confession to repair it. This applies not only to those who would provide care but also to the person who would receive care, or nutrition and hydration. VSED for a Buddhist monastic, whether ill or not and even with the wish to die, incurs only a minor penalty of conduct, not precepts. However, if the monastic is ill beyond the point of recovery and a burden on the community, or close to specific spiritual attainments, it is ethically permissible to forego any interventions including eating and drinking. Although with regard to monastic relations, which can be seen as the strictest iterations of Buddhist conduct, the principle

281

of omission or foregoing of interventions as permissible can still be of guidance in lay contexts as well.

Finally is a finding with some comparative details on the fasting and immobilization as found in Buddhist tukdam and Jain sallekhanā which are remarkably similar but, until now, unequally treated by the public and Indian states.

Finding 14 - Possible causes of criticism and legal challenges towards Jain sallekhanā but not towards Buddhist tukdam: This study identifies five potential areas that could explain why Jain fasting and immobilization continues to be contested in India whereas an analogous Buddhist practice has not been similarly contested. (1) As an emic safeguard, permission is required from religious leadership before Jain sallekhanā can be undertaken, and there are times when the candidate is denied permission because the practice is considered inappropriate for their circumstances. There is no corresponding permission process for Buddhist tukdam. (2) Buddhist tukdam is necessarily verifiable by those inside and outside of the tradition by way of observable and measurable unusual physical signs, considered by Buddhists as proof of attainments. This connects to the previous point on a lack of permission for this practice since it is not considered tukdam unless there are such signs as a lack of rigor mortis after clinical death, and so a practitioner would not enter into the sate if they were unable to do so. There is mention of bodily lustre during sallekhanā in Jain sources but no corresponding anecdotal evidence, whereas there is much anecdotal evidence (again, necessarily so to label the practice) on a life-like lack of decay etc. after clinical death in Buddhist tukdam. (3) Someone entering into Jain sallekhanā is often accompanied by much advance publicity, such as with newspaper spreads by families or devotees, but there is usually no publicity in Buddhist tukdam (except perhaps word-of-mouth in inner circles) until completed. (4) Jain sallekhanā is known as it is happening and is often referred to as a “fast unto death,” terminology which puts the fast and death into a causal relationship. In Buddhist traditions, not just with Tibetan tukdam, a meditation that ends in death is usually not known to be the final meditation (or “death meditation”) until it is finished and is labeled as such only retroactively. (5) Jains are a disproportionately wealthy indigenous minority religious group, making them a possible target of criticism as compared to refugee Tibetans.

These five issues could be contributing factors to the negative attention given to Jain sallekhanā, possibly for better and for worse. If there have been vulnerable elderly practitioners that lacked hard or soft voluntariness or decisional capacity when entering the practice, then the criticism

282 has been helpful in protecting future candidates by prompting Jain communities to look more carefully at possible safeguards and oversight for the practice. This has included asking outsider scholars and healthcare professionals for their perspectives. If criticism has at all interfered with those for whom there should be no concerns around voluntariness or capacity, detractors have had some collateral damage to their pursuits. The lack of tukdam recommendations for safeguards and oversight similar to that given for sallekhanā is based on the fact that such a practice is typically spontaneous, with observable signs of practitioner readiness, and thus far legally or otherwise uncontested.

End-of-life Care Models

This section will present findings and recommendations from the final chapter on end-of- life care models which addressed pain management, hospice palliative care and medical assistance in dying.

Pain Management

Informants spoke of pain medication access and alternative forms of pain management, and a difference of opinion arose between HCPs and non-HCPs on affordability of, and fear related to, pain medication.

Finding 15 - Opioid accessibility geographically variable but improving in India: Informants shared that access to pain medication by both institutions and patients is easier in some parts of South India in contrast to some regions in North India, but a 2014 amendment to the Narcotic Drugs and Psychotropic Substances (NDPS) Act has removed some system-level obstacles.

Finding 16 - Non-pharmacological pain control: Informants mentioned several adjunct means of pain control, such as a shift in focus from the physical to the metaphysical, prayer, fellowship and mere companionship.

283

Finding 17 - HCPs and non-HCPs disagree on pain management: HCP informants felt that their patients cannot afford pain medication and are unafraid of addiction, both of which in contrast to the views of non-HCP respondents.

There seems to be various sources of resistance to pain management among Indic adherents. Indic religious traditions at times reify pain endurance, often framing the experience of pain as a karmic requirement in order to purify negativity. Some informants spoke of preventing the side-effect of sedation in the use of opioids for the sake of mental clarity at death as an aid to transmigration. As well, some Indic cohorts (such as monastics) can trigger reputation bias in healthcare professionals who presume that ascetics necessarily have high pain thresholds.

Recommendation 5 - Behavioural pain assessments: It is recommended to have training in and implementation of behavioural pain assessments as a general standard of care in healthcare settings, to ensure the option of good pain management for those that might deny pain while still being in pain, and especially for those patients who are unable to communicate.

Hospice Palliative Care

Although not very familiar to most informants, the topic of hospice palliative care did produce some opinion trends.

Finding 18 - Low awareness of hospice palliative care: Some informants had heard of “end-of-life care,” but most indicated that they had not heard of either hospice or palliative care and indicated that such a type of dedicated care for the dying is not currently prevalent in India.

Finding 19 - Religious environment for dying preferred: Several informants expressed both esteem and a preference for religious hospice or an environment conducive to religious practice while dying. There was some emphasis on being in undistracted isolation, something supported by some Buddhist and Jain texts.

Finding 20 - Aversion to hospice palliative care: Multiple informants were averse to ordinary hospice palliative care settings with the thought that it can negatively impact the dying person to know they are in a place dedicated to dying.

284

Finding 21 - More palliative support in hospital versus at home: Informants from both north and south India mentioned that palliating in hospital might be better than at home because of the supports of trained staff.

Finding 22 - HCPs and non-HCPs disagree on hospice palliative care: HCP informants felt that their patients would want hospice palliative care but could not afford it, which contrasts the views of non-HCP respondents.

Finding 23 - Dying at home preferred: Among all the study cohorts, most would prefer to die at home.

Medical Assistance in Dying (MAiD): South Asian Religious Views

Indian informants belonging to Semitic monotheistic religious traditions eschewed MAiD entirely.

Finding 23 - Monotheistic adherents’ opposition to MAiD: Monotheistic respondents were the most numerous in discussing MAiD, referred to as “euthanasia” or “mercy killing,” and were also opposed to it.

There is no way to have a definitive stance from the major Indic religious traditions on

MAiD. Overall, however, Buddhism, Hinduism and Jainism all tend away from suicide but perhaps leave open a small amount of room for the possibility for MAiD by adherents but only under extraordinary circumstances. Although more research is needed, especially for Hinduism, this small potential permissibility comes from each of the major Indic religious traditions giving textual allowances for certain types of religious voluntary deaths.

Finding 24 - Buddhism and MAiD: Although Buddhist discipline texts (Vinaya) prohibit against hastening another’s death, commissioning someone to do so, recommending means for euthanasia, and praising death, there also appear precedents of realized masters with illness who ended their lives without fault in discipline or untoward karmic results. H.H. the Karmapa in-person encouraged against a hard and fast position in favour or against MAiD. For Buddhists, then, MAiD permissibility in not impossible but would likely be dependent on the spiritual development of the adherent and a requirement that they administer the lethal dose to themselves.

Finding 25 – Hinduism and MAiD: Historically, there are many types of religious voluntary deaths in Hinduism, including those that actively end life such as immolation, and those which are passive such as fasting. Although two active means of suicide, drowning and widow deaths, have been made illegal in India and suicide being largely

285

frowned upon in Hinduism, some Shakta tantric sources give conditions for yogic death which overlap somewhat both with the four “I”s of MAiD (incurable, irreversible, intolerable, imminent death) and the eligibility requirements of Jain sallekhanā.

Finding 26 - Jainism and MAiD: Jainism has the most strict requirements around religious voluntary death and basically only accepts sallekhanā as permissible. Although not representative, a small group of Jains and scholars, however, left open a small theoretical possibility for MAiD under extreme circumstances of intolerable suffering while simultaneously prohibiting biological interferences, thereby precluding MAiD.

Part 3:

Final Thoughts

The most meaningful part of working on this study was, perhaps unsurprisingly, the great deal of time I was able to spend with the study participants. Some questions that were asked were indeed personal in nature, such as with regard to advance care planning, but even before coming to such questions in interviews I could not have anticipated the extent to which informants would open up in general with personal details both when discussing religion, healthcare and end-of-life matters. Especially given that there is some tension between the encouragement found in the ancient Indic systems with regard to contemplation and preparation for death, and variable comfort-levels of those in India around speaking about death and dying, interviewees dove into such sensitive topics with relative ease.

Informants were also impressively unbound by the closed part of the interviews when asked to merely give a Likert-scale number-ranking for a question, as they so often spoke freely and treated it more like an open-interview. This made for an abundance of data and more material for coding themes. Informants, too, felt very free to look beyond the narrow categories given by the researcher, such as with the roles of players in decision-making group configurations.

286

Some of what I learned from the study participants confirmed some of my suspicions, such as a reification of end-of-life fasting among Jains, low awareness of and some aversion towards hospice palliative care, and a general tendency towards collaborative decision-making.

But at times I was surprised by what was uncovered through our conversations, such as views of

HCPs and non-HCPs being opposing but not the way I would have predicted. For example, non-

HCP informants felt that they could afford pain medication, but their providers thought that they could not. I would have thought this would have been flipped. Also, non-HCPs expressed being afraid of addiction, but I would not have thought HCPs would think that their patients do not have addiction concerns. I also did not anticipate that so many informants would discuss the careful delivery and potential blocking of sensitive health information, and among them there was an impressive concern with the mental and emotional state of the patient at the end of life who might receive such news.

There is still unused data, including seven interviews that took place in the Greater

Toronto Area (GTA) of Canada, and I expect that this, along with India data on the interactions between traditional medical and biomedical systems and trust in healthcare, will allow for future articles.

This study will be shared with all of the study participants and their communities, at their request. My hope is that this will continue an ongoing dialogue and feedback for the purposes of future publications such as this study in book-form, and practical guidance documents such as those which could be easily referenced in hospital units and, as is found with some other religions (such as with some sects of the Semitic monotheistic religions), contribute to the production of a South Asian religious health ethics guide.

287

References

Abdool, Rosalind. The Ethics of Deception in Caregiving: A Patient-Centered Approach. University of Waterloo (dissertation), 2015.

Abrams, Anne Collins. Clinical Drug Therapy: Rationales for Nursing Practice - Seventh 7th Edition. Lippincott, Williams & Wilkins, 2004.

Almaany Arabic Dictionary. 2018. Web. https://www.almaany.com

Alzheimer's Association. What is Dementia? http://www.alz.org/what-is-dementia.asp

Ambedkar, B. R. and the Drafting committee of the Constituent Assembly of India. . January 26, 1950. https://www.india.gov.in/my-government/constitution-india/constitution-india-full-text

Antony, Mary Grace. “On the Spot: Seeking Acceptance and Expressing Resistance through the Bindi.” Journal of International and Intercultural Communication 3(4) 2010: 346-368.

Apte, Vaman Shivaram. Sanskrit-English Dictionary. Star Publications, [1890] 1996

Association of Islamic Charitable Projects In Canada. “How Does One Become a Muslim?” 2012. http://www.aicp.ca/islamic-lessons/english/essentials/how-does-one-become-a-muslim/

Attwood, Michael. “Suicide as A Response to Suffering.” Western Buddhist Review, Vol. 4 May 2004. http://www.westernbuddhistreview.com/vol4/suicide_as_a_response_to_suffering.html

Austerlic, Silvia. “Cultural Humility and Compassionate Presence at the End of Life.” Markkula Center for Applied Ethics, Culturally Competent Care: From Chronic to Critical, 2009. Web. https://www.scu.edu/ethics/focus-areas/bioethics/resources/culturally-competent- care/from-chronic-to-critical/cultural-humilitycompassionate-presence/

Bachelor, Stephan (Translator). Shantideva’s Bodhisattvacharyavatara. Library of Tibetan Works and Archives, date n/a. http://www.abuddhistlibrary.com/Buddhism/A%20- %20Tibetan%20Buddhism/Authors/Shantideva/A%20Guide%20to%20the%20Bodhisatt va's%20Way%20of%20Life%20- %20%20Stephen%20Bachelor%20tra/A%20Guide%20to%20the%20Bodhisattva's%20 Way%20of%20Life.pdf

Back, M.F. and C.Y. Huak. “Family Centred Decision-making and Non-disclosure of Diagnosis in a South East Asian Oncology practice.” Psychooncology 14(12: 2005): 1052-9.

288

Bagby, Philip. Culture and History: Prolegomena to the Comparative Study of Civilizations. University of California Press, 1959.

Bakewell, Francis. “Medical Assistance in Dying (MAID).” CanadiEM. June 1, 2016. https://canadiem.org/medical-assistance-dying/

Barrett, Ron. Aghor Medicine: Pollution, Death, and Healing in Northern India. University of California Press, 2008.

BBC News. India top court lifts ban on Jains' santhara death fast. 31 August 2015. http://www.bbc.com/news/world-asia-india-34105602

BBC News. India court legalises gay sex in landmark ruling. 6 September 2018 https://www.bbc.com/news/world-asia-india-45429664

BBC religions: Jainism. Fasting, 2009. http://www.bbc.co.uk/religion/religions/jainism/customs/fasting_1.shtml

Beauchamp, Tom. L & LeRoy Walters (Eds.) “The Management of Medical Information.” In Contemporary Issues in Bioethics (Third Edition). Wadsworth Publishing Company, 1989: 371-376.

Bell, Sigall K. et al. “Should We Tell Parents When We’ve Made an Error?” Pediatrics Volume 135, number 1, January 2015: 159-63.

Benyamin, Ramsin et al. “Opioid Complications and Side Effects.” Pain Physician 11(2 Suppl) 2008: S105-20.

Berreman, Gerald D. “Ethics versus 'Realism' in Anthropology.” Ethics and the Profession of Anthropology: Dialogue for a New Era. Carolyn Fluehr-Lobban (ed.), Philadelphia: University of Pennsylvania Press, (1996): 298-315.

Bertolucci, Bernardo (Director). Little Buddha. Thomas/Bouygues (Producers), 1993.

Bhaktivedanta Vedabase Online. Date n/a. http://www.vedabase.com/

Bhattacharyya, Swasti. Magical Progeny, Modern Technology: A Hindu Bioethics of Assisted Reproductive Technology. Albany, NY: State University of New York Press, 2006.

Bilimoria, Purushottama. “A Report from India: the Jaina Ethic of Voluntary Death” Bioethics, vol. 6 (1992): 331-355.

Brahmavamso, Ven. Ajahn. Vinaya Notes Vol. 1. Date n/a. http://www.dhammikaweb.com/pdfs/Vinaya_NotesAjahn_Brahmavamso.pdf

289

Braun, Whitney Melissa. Sallekhanā: The Philosophy, Ethics and Culture of the Jain End of Life Ritual. Dissertation. Claremont Graduate University, 2015.

Brian Sinclair Working Group. Out of Sight: A summary of the events leading up to Brian Sinclair’s death and the that examined it and the Interim Recommendations of the Brian Sinclair Working Group, 2017. http://ignoredtodeathmanitoba.ca/index.php/2017/09/15/out-of-sight-interim-report-of- the-sinclair-working-group/

Britannica Concise Encyclopedia. “Mahavira.” Encyclopædia Britannica Inc., 2006.

Buddhaghosa, Bhadantácariya. Bhikkhu Ñáóamoli (Translator). The Path of Purification (Visuddhimagga). Buddhist Publication Society, 2010.

Budhwar, Kusum. Where Gods Dwell: Central Himalayan Folktales and Legends. Penguin, 2010.

Canadian Medical Association. Principles for the Protection of Patients’ Personal Health Information CMA Policy, 2011. http://policybase.cma.ca/dbtw-wpd/Policypdf/PD11-03.pdf

Carrese, Joseph A. “Refusal of Care: Patients’ Well-being and Physicians’ Ethical Obligations “But Doctor, I Want to Go Home” JAMA, Vol 296, No. 6 August 9, 2006: 691-695.

Carter, Satcey M and Miles Little. “Justifying Knowledge, Justifying Method, Taking Action: Epistemologies, Methodologies, and Methods in Qualitative Research.” Qualitative Health Research, Vol. 17, Number 10 (2007): 1316-1328.

Catholic Health Alliance of Canada (CHAC). Health Ethics Guide - Third edition, 2012.

C.D. (Re), 2007 CanLII 32892 (ON CCB) http://canlii.ca/t/1sjjk

Center for Palliative Care: Duke University School of Medicine. End of Life Care Survey. http://www.palliativecare.medicine.duke.edu/.../End_of_Life_Care_Survey.doc

Cheriyedath, Susha. “Absolute Neutrophil Count (ANC).” News-Medical.Net, 2017. https://www.news-medical.net/health/Absolute-Neutrophil-Count-(ANC).aspx

Chidwick, Paula et al. “Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario.” Journal of Critical Care (2013) 28: 22–27.

Chisholm, Hugh, ed. “Heteronomy.” Encyclopædia Britannica 13 (11th ed.) Cambridge University Press, 1911.

Clark, Michelle A. et al (Editors). Pharmacology. Wolters Kluwer Health, 2012.

290

Cohen, Lawrence. No Aging in India: Alzheimer's, The Bad Family, and Other Modern Things. University of California Press, 2000.

College of Nurses of Ontario. Confidentiality and Privacy - Personal Health Information, Practice Standard, 2009.

Collins Hindi-English Dictionary, 2018. https://www.collinsdictionary.com/dictionary/hindi-english/

Con, A. Cross-cultural Considerations in Promoting Advance Care Planning in Canada. Health Canada: Vancouver, 2007.

Corbin, Juliet and Anselm Strauss. “Grounded Theory Research: Procedures, Canons and Evaluative Criteria.” Zeitschrift für Soziologie, 19/6 (1990): 418-427.

Coronil, Fernando. “Introduction to the Duke University Press Edition” in Cuban Counterpoint: Tobacco and Sugar. Duke University Press, 1995: ix-lvi.

Crawford, S. Cromwell “Hindu Bioethics for the Twenty-First Century.” Journal of Hindu- Christian Studies. Vol. 14, Article 9, 2001: 25-30.

Dalai Lama, His Holiness (Tenzin Gyatso). Mind of Clear Light: Advice on Living Well and Dying Consciously. Atria Books, 2003.

______. “Compassion: The Basis of Human Happiness.” A Path to Happiness: Lessons of Meditation and Compassion, 2006. DVD.

Dalrymple, William. “The Nun’s Tale.” Nine Lives: In Search of the Sacred in Modern India. Bloomsbury (2009): 1-28.

Das, Sarat Chandra. Tibetan-English Dictionary. Bengal Secratariat Book Depot, 2000 [1902].

Dash, Vaidya Bhagwan and Acharya Manfred M. Junius. Handbook of Ayurveda. Concept Publishing Company, [1983] 2003.

Davis, D.S. “Old and Thin.” Second opinion (Park Ridge, Ill.) Cleveland-Marshall College of Law, Cleveland State University. Issue 15 1990: 26-32.

Dean, Mervyn M.; Cellarius, Victor; Henry, Blair; Oneschuk, Doreen; Librach, S. Lawrence (Canadian Society of Palliative Care Physicians Taskforce). “Framework for Continuous Palliative Sedation Therapy in Canada.” Journal of Palliative Medicine. Vol. 15 Issue 8, Aug. 2012: 870-896.

291

Deccan Chronicle (no author given). “Family of elders to be probed.” February 2nd, 2010. https://web.archive.org/web/20100206014952/http://www.deccanchronicle.com/chennai/f amily-murders-elders-be-probed-801

Deshpande, Alok. "After 42 Years in Coma, Nurse Aruna Shanbaug Dies." The Hindu. May 18, 2015. http://www.thehindu.com/news/national/after-42-years-in-coma-mumbai-nurse- aruna-shanbaug-dies/article10829840.ece

Dhammikaweb. “Vinaya Notes in English - Ven. Ajahn Brahmavamso.” 2018. Web. http://www.dhammikaweb.com/?p=3811

Dharmawiki. Shraddha. 2018. Web. http://dharmawiki.org/dharmawiki/index.php/Shraddha_(%E0%A4%B6%E0%A5%8D% E0%A4%B0%E0%A4%BE%E0%A4%A6%E0%A5%8D%E0%A4%A7%E0%A4%AE %E0%A5%8D)

Diocese of Cochin. “Holy Cross Hospice,” 2015. Web. http://www.dioceseofcochin.org/diocese/holy-cross-hospice

Dölpa, Gampopa, and Sakya Pandita. David P. Jackson, Ulrike Roesler, Ken Homes (Translators). Stages of the Buddha's Teachings: Three Key Texts. Wisdom Publications, 2015.

Doniger, Wendy and Sudhir Kakar. Vatsyayana Mallanaga Kamasutra. Oxford University Press, 2002.

Doniger, Wendy. The Hindus: An Alternative History. Penguin Books, 2009.

Dorje, H.H. the 17th Gyalwang Karmapa Ogyen Trinley. Chancellor’s Reception. Simcoe Hall, University of Toronto, Wed. May 31, 2017.

______. Dialogue on Sustainability and the Sacred. Multi-Faith Centre (Koffler Institute) University of Toronto, Thurs. June 1, 2017.

Douglas, Charles et al. “Managing Intentions: The end-of-life Administration of Analgesics and Sedatives, and the Possibility of Slow Euthanasia.” Bioethics Volume 22 Number 7 2008: 388–396.

Dresner, Samuel H. and Seymour Siegel. “Keeping Kosher: A Diet for the Soul. A Newely Revised Edition of The Jewish Dietary Laws.” The United Synnoguogue of Conservative Judaism, 2000.

Dundas, Paul. The Jains. Psychology Press, 2002.

Encyclopædia Britannica, “Unani Medicine.” https://www.britannica.com/topic/Unani-medicine

292

Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus, and Giroux, 1997.

Fassin, Didier. When Bodies Remember: Experiences and Politics of AIDS in South Africa. University of California Press, 2007.

Field, Howard L. “A Patient With Acute Traumatic Quadriplegia Who Requested a DNR Order.” Psychosomatics 49:3, 2008: 252-254.

Fowler, Robert and Michael Hammer. “End-of-Life Care in Canada.” Clin Invest Med Vol 36, no 3, June 2013: 127-132.

Foucault, Michel. Wrong-doing and Truth-telling: the Function of Avowal in Justice. University of Chicago Press, 2013.

Francis, M. R. Concerns of Terminally Ill Adult Hindu Cancer Patients. Cancer Nursing, 9(4) 1986: 164-171.

Gampopa. Ulrike Roesler et al. (translators). “Ornament of Precious Liberation.” In Stages of the Buddha’s Teachings: Three Key Texts. Wisdom Publications, 2015.

Ganguly, J. The Offences and Retributions in the Vinayapitaka. Namgyal Institute of Tibetology, Gangtok, Sikkim (1987) 2012: 25-31.

Garcia, Angela. The Pastoral Clinic: Addiction and Depression Along the Rio Grande. University of California Press, 2010.

Garg, Gaṅgā Rām. Encyclopaedia of the Hindu World, Volume 1. Concept Publishing Company, 1992.

Gerke, Barbara. “Tibetan Precious Pills as Therapeutics and Rejuvenating Longevity Tonics.” History of Science in South Asia, 5.2 (2017): 204-233.

General Medical Council (UK). Personal beliefs and medical practice, 2013. https://www.gmc-uk.org/static/documents/content/Personal_beliefs-web.pdf

Ghatwai, Milind. “India Santhara ruling: Woman dies after week-long fast, Jain leaders cry foul Santhara ruling: Woman dies after week-long fast, Jain leaders cry foul.” The Indian Express. August 13, 2015. http://indianexpress.com/article/india/india-others/santhara-ruling-woman-dies-after- week-long-fast-jain-leaders-cry-foul/

Gietz K.P. et al. Epic and Puranic Bibliography. Otto Harrassowitz Verlag, 1992.

293

Gonpo, Yuthok Yonten. The Root Tantra and the Explanatory Tantra from the Secret Quintessential Instructions on the Eight Branches of the Ambrosia Essence Tantra. Men- Tsee-Khang, 2008.

Gouvernement du Québec. Medical Aid in Dying, 2017. http://sante.gouv.qc.ca/en/programmes-et-mesures-daide/aide-medicale-a-mourir/

Government of Canada. Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying [MAiD]), First Session, Forty- second Parliament, 2016 (assented to 17 June 17 2016). http://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent

______. Medical Assistance in Dying, 2017. https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

Government of Ontario. Bill 84, Medical Assistance in Dying Statute Law Amendment Act, 2017. https://www.ola.org/en/legislative-business/bills/parliament-41/session-2/bill-84

______. Health Care Consent Act, 1996, S.O. 1996, c. 2, Sched. A https://www.ontario.ca/laws/statute/96h02

______. Personal Health Information Protection Act, 2004, S.O. 2004, c. 3, Sched. A. https://www.ontario.ca/laws/statute/04p03

Ghurye, Govind Sadashiv. Caste and Race in India. Popular Prakashan Private Limited, [1932] 2008.

Gyal, Dr. Yangbum. Tibetan Medical Dietary Book: Vol – 1. Potency and Preparation of Vegetables. Documentation and Publication Department, Men-Tsee-Khang, 2011.

Hankey, Alex. “Studies of Advanced Stages of Meditation in the Tibetan Buddhist and Vedic Traditions. I: A Comparison of General Changes.” Evid Based Complement Alternat Med. 2006 Dec; 3(4): 513–521.

Harris, Kathleen. “More than 2,000 Canadians have died with medical assistance since legalization.” CBC News. Oct 06, 2017. https://www.cbc.ca/news/politics/medical-assistance-death-figures-1.4344267

Harrison, C. "Treatment Decisions Regarding Infants, Children and Adolescents. Canadian Paediatric Society (CPS), Bioethics Committee Position Statement.” Paediatric Child Health 2004;9(2): 99-103.

Heim, Maria. The Forerunner of All Things: Buddhaghosa on Mind, Intention, and Agency. Oxford University Press, 2014.

294

Heyland DK et al. “Decision-making in the ICU: Perspectives of the Substitute Decision-maker.” Intensive Care Med. 2003 Jan; 29(1): 75-82.

Hillman, Sean. Email correspondence. May 27, 2017.

Hood, Robert L. “Buddhism and the Practice of Bioethics in the United States.” Buddhist Studies from India to America: Essays in Honor of Charles S. Prebish. Damien Keown, Editor. Routledge, 2006: 28-39.

Hooker, Worthington. “Truth in our Intercourse with the Sick.” Beauchamp, Tom. L & LeRoy Walters (Eds.) In Contemporary Issues in Bioethics (Third Edition). Wadsworth Publishing Company, 1989: 377-380.

Hopkins, Jeffrey (Editor). Tibetan-Sanskrit-English Dictionary. University of Virginia Tibetan Studies Program, 1992.

Hoskins, Hon. Eric (Minister of Health and Long-Term Care). Bill 84, Medical Assistance in Dying Statute Law Amendment Act, 2017. http://www.ontla.on.ca/web/bills/bills_detail.do?locale=en&BillID=4460

Institute of Jainology. Jainpedia. 2018. http://www.jainpedia.org/resources/glossary.html

International School for Jain Studies (ISJS). Bhagavatī Ārādhanā, 2009. http://www.herenow4u.net/index.php?id=68875

Iyer, Malathy. “At India's first hospice, every life is important.” Times of India, Mar 8, 2011.

Jain, Danesh and George Cardona. The Indo- Languages. Routledge, 2003.

Jain, Prem Suman. “A Rare Manuscript of the Bhagavatī Ārādhanā.” In Jaina Scriptures and Philosophy. Flügel, Peter and Olle Qvarnström (Editors). Routledge, 2015.

Jain, Sagarmal. “ [From earliest time to c. 10th A.D.]” Aspects of Jainology Volume VI, 1998.

Jain, Vijay K. (translator, editor). Acarya 's . Vikalp Printers, 2013.

Jaini, Padmanabh S. The Jaina Path of Purification. Delhi, Motilal Banarsidass Publishers, 1998.

Jacobi, Herman(translator). Friedrich Max Müller (Editor). The Sacred Books of the East: Gaina , pt. 1. Oxford Clarendon Press, 1884.

James, William. “The Dilemma of Determinism.” The Unitarian Review and Religious Magazine (1874-1886). Boston 22.3 (Sep 1884): 1-32.

295

Jisho English/Japanese Dictionary, 2012. https://jisho.org/

Johnson, Helen M. Trishashti Shalaka Purusha Caritra. Baroda Oriental Institute, 1931. https://www.wisdomlib.org/jainism/book/trishashti-shalaka-purusha-caritra

Johnson, Norris Brock “Sex, Color, and Rites of Passage in Ethnographic Research.” Ethnographic Fieldwork: An Anthropological Reader. Robben, Antonius C. G. M. and Jeffrey A. Sluka, eds. Blackwell Publishing (2007): 76-91.

Jnanamati, Ganini. Jaina Bharati: The Essence of Jainism. Hastinapura, Digambar Jain Institute of Cosmographic Research, 2007

Justice, Christopher. Dying the Good Death: The Pilgrimage to Die in India’s Holy City. Albany: State University of New York Press, 1997.

Kale, Sumita and Laveesh Bhandari. “Ethics and Side Payments.” India Health Report, BS Books 2010: 73-82.

Kalghatgi, Dr. T. G. Jaina View of Life. Lalchand Hirachand Doshi, 1969.

Kangle, R. P. The Kauṭilīya Arthaśāstra: Part III, A study. Motilal Banarsidass, [1965] 1986.

Kannan, K. Medicine and Law. Oxford University Press, 2014.

Kantin, Holly and David Wendler. “Is There a Role for Assent or Dissent in Animal Research?” Cambridge Quarterly of Healthcare Ethics 24, 2015: 459–472.

Kaul, Rhythma. “Mental Healthcare Bill decriminalising passed by Parliament.” Hindustan Times, New Delhi. Mar 27, 2017 https://www.hindustantimes.com/india-news/mental-healthcare-bill-that-decriminalises-suicide- attempt-passed-by-parliament/story-iL3DXiatxP7BFhS2t4zGCM.html

Kenny, Nuala. Health Decisions and Care at the End of Life: A Catholic Perspective. Catholic Health Alliance of Canada, 2015.

Keown, Damien. Buddhism & Bioethics. London and New York: Macmillan/St. Martins Press, 1995.

Khaleej Times. “Death of minor girl after 68-day fast sparks outcry.” Reuters, 10 Oct 2016 http://www.pressreader.com/uae/khaleej-times/20161010/282050506575413

Khosla, Divya et al. “Palliative Care in India: Current Progress and Future Needs.” Indian J Palliat Care. 2012 Sep-Dec; 18(3): 149-154.

296

Kinzbrunner, BM. “Jewish medical ethics and end-of-life care.” J Palliat Med. 2004 Aug;7(4): 558-73.

Kishor, Vraja. “Super Basic Positive and Negative Prefixes.” Easy Sanskrit, 2014. Web. https://easysanskrit.wordpress.com/category/prefixes/

Kleinman, Arthur. Writing at the Margin: Discourse Between Anthropology and Medicine. University of California Press, 1997.

Krishnamurthy, Shyamala. “Languages: How different is Sanskrit from Hindi?” Quora, 2016. https://www.quora.com/Languages-How-different-is-Sanskrit-from-Hindi

Kuensel Online. “Khenpo Karpo passes away, remains in meditative state.” January 21, 2017. http://www.kuenselonline.com/khenpo-karpo-passes-away-remains-in-meditative-state/

Kumar, Jyotica Pragya. Informed Consent in Judicial Discourse: India and Canada 1996-2003. UMI Dissertations Publishing, 2005.

Kwicnic television commercial, January 2014. Web. https://youtu.be/Utw1maGy7uA

Lachman, Vicki D. "Voluntary Stopping of Eating and Drinking: An Ethical Alternative to Physician-Assisted Suicide." Ethics, Law, and Policy. Vol. 24/No. 1, 2015: 59-59.

Lalwani, Kastur Chand. Kalpa Sūtra of Bhadrabāhu Svāmī. Motilal Banarsidass, 1979.

Lamb, Sarah. White Saris and Sweet Mangoes: Aging, Gender, and Body in North India. Berkeley: University of California Press, 2000.

Latour, Bruno. “How to Talk About the Body? The Normative Dimension of Science Studies.” Body & Society 10 (2004): 205-229.

Law, Bimala Churn. The Life and Work of Buddhaghosa. Delhi: Asian Educational Series, [1923] 1997.

Law Commission of India, Ministry of Law (Government of India). Indian Penal Code, June 1971. http://lawcommissionofindia.nic.in/1-50/report42.pdf

Lemmens, Dr. Trudo. The Challenges of Advance Requests for Medical Assistance in Dying. Advocacy Centre for the Elderly (ACE) and University of Toronto Faculty of Law. Thursday June 14, 2018. Lecture.

Lemmens, Dr. Trudo. Why Physician-Assisted Dying Can and Should Remain Restricted After Carter: Lessons from the Belgian Experience. JCB seminar series, February 3, 2016. Lecture.

297

Lindblad, Anna et al. “End-of-Life Decisions and the Reinvented Rule of Double Effect: A Critical Analysis.” Bioethics Volume28, Issue7 (2014): 368-377.

Lock, Margaret. “Introduction.” Biomedicine Examined. Margaret Lock and Deborah Gordon (Eds.). Dordrecht; Boston: Kluwer Academic Publishers, 1988.

Lohman et al. “Access to Pain Treatment as a Human Right.” BMC Medicine 8/8 2010: 1-9.

Macdonell, Arthur Anthony. A Sanskrit-English dictionary. Longmans, Green and Co., 1893.

Magnier, Mark. “Speeding Up the Cycle of Life.” The Toronto Star, Mon. Jan. 21, 2013: A4. Print.

Magnier, Mark. “In southern India, relatives sometimes quietly kill their elders.” Los Angeles Times. January 15, 2013. http://articles.latimes.com/2013/jan/15/world/la-fg-india-mercy-killings-20130116

Mahapatra, Dhananjay. “In historic verdict, SC okays passive euthanasia Asks HC To Give Go- Ahead After Getting Consent and Expert Opinion.” The Times Of India, Ahmedabad. Mar 8, 2011. http://epaper.timesofindia.com/Repository/ml.asp?Ref=VE9JQS8yMDExLzAzLzA4I0Fy MDAxMDA%3D

______. “After passive euthanasia, SC will now examine ‘living will.’” The Times of India. Oct 11, 2017. https://timesofindia.indiatimes.com/india/after-passive-euthanasia-sc-will-now-examine- living-will/articleshow/61028434.cms

Makbul, Shaikh Ajij Ahmed et al. “Scientific appraisal of urolithiasis and its remedial measures in Unani medicine.” Journal of Herbal Medicine. Volume 8, June 2017: 1-7

Malinowski, Bronislaw. “Introduction.” Cuban Counterpoint: Tobacco and Sugar. Duke University Press, 1995 [1947]: lvii-lxiv.

Mangan, Joseph T. “An Historical Analysis of the Principle of Double Effect.” Theol Stud 1949; 10: 41-61.

Marotta, Vince. “The Multicultural, Intercultural and the Transcultural Subject.” Global Perspectives on the Politics of Multiculturalism in the 21st Century: A Case Study Analysis. New York: Routledge, 2014: 90-102

Martin, Sandra. “Kim’s Choice: A Death on Her Own Terms.” The Globe and Mail, 2014. Web. 25 Aug. 2014. http://www.theglobeandmail.com/life/health-and-fitness/health/kims-choice-how-one- family-confronts-a-genetic-time-bomb/article19657030/

298

Maya, C. “Passing of NDPS Act Amendment Bill will make morphine more accessible.” The Hindu, Feb. 23 2014. http://www.thehindu.com/todays-paper/tp-national/passing-of-ndps-act-amendment-bill- will-make-morphine-more-accessible/article5718188.ece

Maynard, Douglas W. Bad News, Good News: Conversational Order in Everyday Talk and Clinical Settings. University of Chicago Press, 2003.

Mayo Clinic. Delirium. http://www.mayoclinic.org/diseasesconditions/delirium/basics/definition/con-20033982

McCormick, A.J. “Buddhist Ethics and End-of-Life Care Decisions.” Journal of Social Work in End-of-Life and Palliative Care, Volume 9, Issue 2-3, 2013: 209-225.

McGregor, R.S. Oxford Hindi-English Dictionary. Oxford University Press, 1993.

Millam, D. “The History of Intravenous Therapy.” Intraven Nurs. 19 (1) 1996: 5-14.

Ministry of Health and Long-Term Care. Ontario Passes Legislation on Medical Assistance in Dying Province Providing Clarity and Protection for Patients and Health Care Providers. May 9, 2017. https://news.ontario.ca/mohltc/en/2017/05/ontario-passes-legislation-on-medical- assistance-in-dying.html

Mol, Annemarie. The Body Multiple: Ontology in Medical Practice. Duke University Press, 2002.

Mooney, Linda A. et al. Understanding Social Problems, 8th edition. Wadsworth Cengage Learning, 2013.

Müller, Friedrich Max and Monier Williams et al. Studies in Buddhism. Asian Educational Services, [1888] 1999.

Murata, Kyoko. “Grieving Tradition in a New Land: Hindu Death and Dying Rituals in America.” Bregman, Lucy (Ed.). Religion, Death, and Dying, Volume 3: Bereavement and Death Ritual. Greenwood Publishing Group, 2010: 127-148.

Nagarajan, Rema. “More women study medicine, but few practice.” The Times of India, Jan 11, 2016. https://timesofindia.indiatimes.com/india/More-women-study-medicine-but-few- practise/articleshow/50525799.cms

Nandimath, Omprakash V. “Consent and Medical treatment: The Legal Paradigm in India.” Indian Journal of Urology: IJU: Journal of the Urological Society of India, V.25 (3, 2009): 343-347.

299

Narang, Neha and Jyoti Sharma. “Sublingual Mucosa as a Route for Systemic Drug Delivery.” International Journal of Pharmacy and Pharmaceutical Sciences. Vol 3, Suppl 2, 2011: 18-22. http://www.ijppsjournal.com/Vol3Suppl2/1092.pdf

National Association of Hospice Fundraisers (NAHF). “History of the Hospice Movement.” 2017. https://www.nahf.org.uk/what-is-a-hospice/history-of-the-hospice-movement.html

National Hospice and Palliative Care Organization. “History of Hospice Care Hospice: A Historical Perspective.” No date. https://www.nhpco.org/history-hospice-care

Nelson Canadian Dictionary of the English Language. International Thomson Publishing Company, 1997.

Novotny, William E. and Ronald M. Perkin et al. “Mechanical Ventilation for a Child With Quadriplegia.” Pediatrics Volume 134, Number 3 2014: 593-597.

Qvarnström, Olle. Jainism and Early Buddhism: Essays in Honor of Padmanabh S. Jaini. Asian Humanities Press, 2003.

Ontario Human Rights Commission. Creed. http://www.ohrc.on.ca/en/code_grounds/creed

Ortiz, F. Cuban Counterpoint: Tobacco and Sugar. Duke University Press, 1995 [1947].

Pain Community Centre. Pain Assessment Tools. Cardiff University. Date n/a. Web. http://www.paincommunitycentre.org/article/pain-assessment-tools

Parry, Jonathan. “Death and Cosmogony in Kashi.” Contributions to Indian Sociology 15:1-2 (1981): 337-65.

Patterson, David. R. et al. “When Life Support is Questioned Early in the Care of Patients with Cervical-level Quadriplegia.” New England Journal of Medicine. Vol. 328 No. 7, 1993.

Pel, Nam-kha. Brian Beresford (Translator) and Jeremy Russel (Editor). Mind Training Like Rays of Sun. Library of Tibetan Works and Archives, 1992.

Pellatt, Glynis. “Ethnography and Reflexivity: Emotions and Feelings in Fieldwork. Nurse Researcher, 10,3 (2003): 28-37.

Pellegrino ED. “Is Truth Telling to the Patient a Cultural Artifact?” JAMA 268, 1992: 1734-1735

Pérez-Stable, Eliseo J. “Bridging Health Gaps through Language Access.” National Institute on Minority Health and Health Disparities (NIMHD). Web. https://www.nimhd.nih.gov/programs/edu-training/language-access/index.html

300

Potter, Patricia A. et al. Canadian Fundamentals of Nursing – Second Edition. Elsevier (Canada), 2001.

Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, Final Report. Nov. 30, 2015. http://www.health.gov.on.ca/en/news/bulletin/2015/docs/eagreport_20151214_en.pdf

Rabgay, Lobsang. En-gendering Tibet: Nation, Narration and the Woman’s Body in Diaspora. PhD Dissertation: London University (School of African and Oriental Studies), 2004.

Ranganayakulu, Potturu. Ayurveda Medical Dictionary. Publisher and date n/a. http://sanskritdictionary.com/

Raz, Joseph. “Explaining Normativity.” Engaging Reason: On the Theory of Value and Action. New York: Oxford University Press, 2002: 90-117.

Red Carpet Moving Pictures. Mukti Bhawan (Hotel Salvation) Official Trailer. YouTube. Mar 8, 2017. Video. https://youtu.be/1A1Sp6-GcmI

Reese DJ, Ahern RE, Nair S, et al. “Hospice Access and use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research (Hospice Barriers Scale and Hospice Values Scale).” Soc Work 44 (1999): 549-559.

Registered Nurse Association of Ontario (RNAO). Assessment and Management of Pain: Third Edition, 2013.

Richeimer, Dr. Steven. “The Richeimer Pain Update.” The Richeimer Pain Medical Group, December 2000. http://www.helpforpain.com/arch2000dec.htm

Rigpa Shedra. The Four Maras. 2017. Web. http://www.rigpawiki.org/index.php?title=Four_maras

Rinbochay, Lati. Death, Intermediate State, and Rebirth in Tibetan Buddhism. Snow Lion Publications, 1980.

______. Mind in Tibetan Buddhism. Snow Lion Publications, [1980] 1986.

Rinpoche, Lama Zopa. Meaning of the Praise and Mantra of Medicine Buddha. Land of Medicine Buddha, 2001. http://landofmedicinebuddha.org/about-medicine-buddha/meaning-of-mantra-and-praise/

301

Rinpoche, Prof. Samdhong. “Advisory talk to a group of Healthcare professionals from Louisiana, the United States.” October 17, 2014. Lecture. http://samdhongrinpoche.com/en/prof-samdhong-rinpoches-advisory-talk-to-a-group-of- healthcare-professionals-from-louisiana-the-united-states/

Rose A, Peters N, Shea JA, et al. “Development and Testing of the Health Care System Distrust Scale.” J Gen Intern Med 19 (2004): 57-63.

Robertson, Grant and Karen Howlett. “How a little-known patent sparked Canada’s opioid crisis.” The Globe and Mail. Fri. May 19, 2017. https://www.theglobeandmail.com/news/investigations/oxycontin/article33448409/

Saras, Shri Chand Surana (Editor) and Surendra Bothara (English Translator). Illustrated (Part-1 A Jain Canon) Prakrit-Hindi-English; Padma Prakashan, Delhi; 1999.

Sarbacker, Stuart Ray. Samadhi: The Numinous and Cessative in Indo-Tibetan Yoga. State University of New York Press, 2005.

Schüklenk, Udo et al. “End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.” Bioethics Volume 25 Suppl 1 (2011): 1-73.

Shah, Natubhai. Jainism: The World of Conquerors, Volume 1. Sussex Academic Press, 1998.

Sharma, Awadesh N. et al. (Eds.). Indigenous Health Care and Ethno-medicine. New Delhi: Sarup and Sons, 2006.

Sharma, Lalit. “Rajasthan High Court Bans Jain Ritual of Fasting unto Death.” Hindustan Times, Aug 10, 2015. http://www.hindustantimes.com/india/rajasthan-high-court-bans-jain-ritual-of-fasting- unto-death/story-uKTA81o6hb51s3jgVEMNKP.html

Siderits, Mark. Buddhism as Philosophy: An Introduction. Hackett Publishing Company, 2017.

Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008.

Sinha, Bhadra “Supreme Court approves passive euthanasia, upholds right to die with dignity.” Hindustan Times, New Delhi. Mar 09, 2018. https://www.hindustantimes.com/india-news/sc-allows-living-will-for-passive- euthanasia-recognises-right-to-die-with-dignity/story-xkMj8MAcnddS2AJUogjzcL.html

Sox, Harold C. (Editor). “Medical Professionalism in the New Millennium: A Physician Charter.” Ann Intern Med. 2002;136: 243-246.

302

Spoken Sanskrit Dictionary. Web. http://spokensanskrit.org/index.php?direct=au

Śreyas, Dr. D.S. Baya. Samādhimaraṇa - Death With Equanimity: The Pursuit of . Jaipur: Prakrit Bharati Academy, 2007.

Straw G, Cummins MA (editors). The Carolinas Center for Hospice and End of Life Care. AARP North Carolina End of Life Care Survey, 2003. http://www.aarp.org/research/reference/memberopinions/aresearch-import-68.html

Supreme Court of Canada. Carter v. Canada (Attorney General), 2015 SCC 5, [2015] 1 S.C.R. 331 https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do

Swan, Michael. “Assisted Killing Still Part of Palliative Plan.” Catholic Register, July 30-August 6, 2017: 4.

Taub AL, Keune JD, Kodner IJ, et al. “Respecting Autonomy in the Setting of Acute Traumatic Quadriplegia.” Surgery 2014; 155(2): 355-360.

Thanissaro, Bhikkhu, (Geoffrey DeGraff), (Translation & Commentary). “The Buddhist Monastic Code I: The Patimokkha Rules. N.P. Third Edition.” Access to Insight, 2013a. http://www.accesstoinsight.org/lib/authors/thanissaro/bmc1.pdf

______, “The Buddhist Monastic Code II: The Khandhaka Rules.” Access to Insight, 2013b. http://www.accesstoinsight.org/lib/authors/thanissaro/bmc2.pdf

______, “Mahavagga.” Access to Insight, 2013c. http://www.accesstoinsight.org/tipitaka/vin/mv/index.html

______, “Samyutta Nikaya: The Grouped Discourses.” Access to Insight, 2013d. http://www.accesstoinsight.org/tipitaka/sn/index.html

Tirthankeer Mahaveer University (TMU). [speaker name unavailable] Sallekhana Symposium. Mar 5th, 2016.

The Canadian Encyclopedia. “.” Date n/a. http://www.thecanadianencyclopedia.ca/en/m/article/suicide

The Hindustan Times. “Citing Hinduism, Jainism, NGO Pitches for Euthanasia.” New Delhi: HT Media Ltd., Feb. 13, 2009.

303

Thornhill, Ted. “Buddhist monk enters trance in bid to 'meditate himself to death'…and tells followers he will spontaneously combust on Thursday.” Mail Online 10 September, 2014. http://www.dailymail.co.uk/news/article-2750561/Buddhist-monk-enters-trance-bid- meditate-death-tells-followers-spontaneously-combust-Thursday.html

Triana, María. Managing Diversity in Organizations: A Global Perspective. Routledge, 2017.

Tsongkhapa, Lama. Gavin Kilty (Translator). A Lamp to Illuminate the Five Stages: Teachings on Guhyasamaja Tantra. Wisdom Publications, 2013.

Tukol, T. K. Sallekhanā is not Suicide. Ahmedabad: L. D. Institute of Technology, 1976.

Upadhye, Dr. A.N (1943); Brhat Kathākosa of Ācharyā Hariṣeṇa; Bharatiya Vidva Bhavan, Bombay.

U.S. National Library of Medicine. “What is Palliative Care?” MedlinePlus July, 2017. https://medlineplus.gov/ency/patientinstructions/000536.htm

Vig Elizabeth K. et al. “Beyond Substituted Judgment: How Surrogates Navigate End-of-Life Decision-Making.” The American Geriatrics Society, 54 (2006): 1688-1693. van Buitenen, J.A.B. (Editor). The Mahābhārata Book III, The Book of the Forest. University of Chicago Press, 1975. von Glasenapp, Helmuth. Jainism: An Indian Religion of Salvation. Motilal Banarsidass Publ., 1999.

______. The Doctrine of Karman in . Asian Humanities Press, 2003.

Weiss, Edward. “Room for improvement in Ontario’s MAID Care Coordination Service.” Healthy Debate. August 9, 2017. http://healthydebate.ca/opinions/medical-assistance-in-dying#comment-2911171

White, David Gordon. Sinister Yogis. The University of Chicago Press, 2009.

Willems, D.L., Verhagen, A.A., van Wijlick, E., Committee End-of-Life Decisions in Severely Ill Newborns of Royal Dutch Medical Association. “Infants’ Best Interests in End-of-life Care for Newborns.” Pediatrics Volume 134, Issue 4, 1 October 2014: e1163-e1168.

Williams, Monier. Monier Williams Sanskrit-English Dictionary. [1870] 2008. Web. http://www.sanskrit-lexicon.uni-koeln.de/monier/

World Health Organization. “WHO Definition of Palliative Care.” 2017. www.who.int/cancer/palliative/definition/en/

304

Yadav, Sanjay. “Woman Kills Self in Hospital as Mom Dies.” Sunday Times - Times of India, Nov. 9, 2014: 1,5.

Pellegrini, Andrés Montano. Tibetan to English Translation Tool. The Tibetan and Himalayan Library, 2011. http://www.thlib.org/reference/dictionaries/tibetan-dictionary/index.php

Puri, S Gopal. “Tibetan PM-in-exile: Kalon Tripa is now Sikyong.” Times of India, Sept. 21 2012. https://timesofindia.indiatimes.com/india/Tibetan-PM-in-exile-Kalon-Tripa-is-now- Sikyong/articleshow/16484291.cms

Valby, Jim. Tibetan to English Translation Tool. The Tibetan and Himalayan Library, 2011. http://www.thlib.org/reference/dictionaries/tibetan-dictionary/index.php

Waldo, Ives. Tibetan to English Translation Tool. The Tibetan and Himalayan Library, 2011. http://www.thlib.org/reference/dictionaries/tibetan-dictionary/index.php

Walshe, Maurice O'Connell (Translator, from Pali). “Attadiipaa Sutta: An Island to Oneself.” (Samyutta Nikaya, SN 22.43). Access to Insight (BCBS Edition), 2013. http://www.accesstoinsight.org/tipitaka/sn/sn22/sn22.043.wlsh.html

Willingham, AJ. “A man's tattoo left doctors debating whether to save his life.” CNN, Sat December 2, 2017. http://www.cnn.com/2017/12/01/health/dnr-do-no-resuscitate-tattoo-medical-debate- trnd/index.html

Yeshe, Rangjung. Tibetan to English Translation Tool. The Tibetan and Himalayan Library, 2011. http://www.thlib.org/reference/dictionaries/tibetan-dictionary/index.php

Young, Katherine K. “Euthanasia: Traditional Hindu Views and the Contemporary Debate.” In Hindu Ethics: Purity, Abortion, and Euthanasia. Albany, State University of New York Press, 1989.

Zysk, Kenneth G. Asceticism and Healing in Ancient India: Medicine in the Buddhist Monastery. Delhi: Motilal Banarsidass Publishers, 1991.

Zkorean English/Korean Dictionary, 2018. https://zkorean.com/

305

Appendix A: Relevant Sections from Questionnaire and Select Questions from Open Interview

Questions from Introduction

1. What do you think ‘health’ is? What are the causes of health?

2. What do you think ‘illness’ is? What are the causes of illness?

3. What is death?

4. What is religion?

5. What is ‘health care’? Is it a necessary part of life?

6. What is ‘end-of-life care’? Is it a necessary part of life?

Questions from Ch. 1 “Shall we Tell the Patient?” Blocking Bad News

Likert scale:

1. Strongly Agree 2. Agree 3. Neither Agree nor Disagree 4. Disagree 5. Strongly Disagree

Non-healthcare professionals version

Beliefs About Dying, Truth Telling, and Advance Care Planning

1. You feel comfortable talking about death.

2. If you were dying, you would want the doctors to tell you.

3. If you were dying, you would tell my family.

4. Dying is a normal part of life.

5. Death should be avoided at all costs.

6. You have thought about the kind of medical care that you want when you are dying.

7. You have talked to you family about the kind of medical care that you want when you are dying.

306

EOL Decision-making

1. In your experience in Health Care environments, you/your loved one typically was fully informed by the team about your/their condition…or, in your opinion, patients typically are fully informed by the team about their condition 2. In your experience in Health Care environments, you/your loved one typically was not fully informed by the team about my/their condition… or, in your opinion, patients typically are not fully informed by the team about their condition 3. If you were dying, you would want to know everything about your condition. 4. If you were dying, you would not want to know anything about your condition.

Healthcare professionals version

Beliefs About Dying, Truth Telling, and Advance Care Planning

1. I feel comfortable talking about death.

2. My patients/clients feel comfortable talking about death.

3. If my patient/client was dying, I would want to tell them.

4. If they were dying, my patients/clients would want me to tell them.

5. If my patient/client were dying, I would tell their family.

6. If they were dying, my patients/clients would want me to tell their family.

7. Dying is a normal part of life.

8. My patients/clients feel that dying is a normal part of life.

9. Death should be avoided at all costs.

10. My patients/clients feel that death should be avoided at all costs.

11. My patients/clients have thought about the kind of medical care that they want when they are dying.

12. My patients/clients have talked to their family about the kind of medical care that they want when they are dying.

307

EOL Decision-making

1. My patients/clients typically are fully informed by the team about their condition. 2. My patients/clients feel that they are typically fully informed by the team about their condition. 3. My patients/clients typically are not fully informed by the team about their condition. 4. My patients/clients feel that they are typically are not fully informed by the team about their condition.

Questions from Ch. 3 “I have this pain…” End-of-life Models of Care: South Asian Adherent Perspectives on Pain Management, Hospice Palliative Care and Medical Assistance in Dying (MAiD)

Non-Health Care Professionals Version

Pain Management at the End of Life

If I had a serious illness (like cancer) that the doctors could not cure and I had pain:

1. I am afraid my doctor would not believe that I am in pain.

2. I am afraid my doctor would not prescribe pain medicines for me.

3. I would only take pain medicines when the pain is severe.

4. I am afraid I will become addicted to pain medicines.

5. I am afraid I would be given too much pain medicine.

6. I am afraid I wouldn’t have money to buy pain medicine.

7. I am afraid the pharmacy wouldn’t have the pain medicine I need.

8. If I were in pain, I would not tell anyone.

Health Care Professionals Version

1. I sometimes do not believe that patients are in pain.

2. I have to help the patient/client get over the fear that I would not prescribe pain medicines for them.

3. I would only prescribe pain medicines when the pain is severe.

308

4. I am afraid my patient/client will become addicted to pain medicines.

5. I am afraid to prescribe too much pain medicine.

6. I have to help the patient/client who cannot afford to buy pain medicine.

7. I am afraid the pharmacy won’t have the pain medicine I need to prescribe.

8. I have to help the patient/client to get over the fear of telling someone that they are in pain.

Exposure to Hospice Palliative Care

This section contains questions and statements about Hospice and Palliative Care. Hospice and Palliative Care are programs that provide care to people with illnesses that cannot be cured when they are at the end of their lives. The goal of Hospice and Palliative Care is to keep terminally ill patients as comfortable as possible.

Non-Health Care Professionals Version

1. Have you ever heard of Hospice? a. I have never heard of hospice. b. I have heard a little about hospice. c. I have heard a lot about hospice. 2. Have you ever heard of Palliative Care? a. I have never heard of Palliative Care. b. I have heard a little about Palliative Care. c. I have heard a lot about Palliative Care. 3. How did you learn about Hospice services? a. I know someone who used Hospice services. b. I have used Hospice services myself. c. I heard about Hospice from the radio, television, or newspaper. d. I heard about Hospice from my religious representative. e. I heard about Hospice from others. 4. How did you learn about Palliative Care services? a. I know someone who used Palliative Care services. b. I have used Palliative Care services myself. c. I heard about Palliative Care from the radio, television, or newspaper. d. I heard about Palliative Care from my religious representative or texts. e. I heard about Palliative Care from others.

309

Health Care Professionals Version

3. a. I know someone who used Hospice services. b. I have used Hospice services myself. c. I deliver Hospice services. d. I heard about Hospice from the radio, television, or newspaper. e. I heard about Hospice from my religious representative or texts. f. I heard about Hospice from others. 4. a. I know someone who used Palliative Care services. b. I have used Palliative Care services myself. c. I deliver Palliative Care services. d. I heard about Palliative Care from the radio, television, or newspaper. e. I heard about Palliative Care from my religious representative or texts. f. I heard about Palliative Care from others. 5. Have your patients/clients ever heard of Hospice? a. They have never heard of hospice. b. They have heard a little about hospice. c. They have heard a lot about hospice. 6. Have your patients/clients ever heard of Palliative Care? a. They have never heard of Palliative Care. b. They have heard a little about Palliative Care. c. They have heard a lot about Palliative Care. Attitudes Towards Hospice Palliative Care

Non-Health Care Professionals Version

1. If I was dying, I would want Hospice or Palliative Care.

2. Even if I wanted Hospice or Palliative Care, I could not afford it.

3. I wouldn’t need Hospice or Palliative Care if I was dying because my family would take care of me.

4. Hospice or a Palliative Care Centre/Unit is a place where people go to die.

5. Hospice or Palliative Care means one gets no treatment.

6. Hospice or Palliative Care treatment is not as good as other types of treatment in the hospital.

7. Hospice or Palliative Care means giving up.

8. Hospice or Palliative Care makes people die more quickly.

310

Health Care Professionals Version

1. If my patient/client were dying, they would want to have Hospice or Palliative Care. 2. Even if my patients/clients wanted Hospice or Palliative Care, they could not afford it. 3. My patients/clients wouldn’t need Hospice or Palliative Care if they were dying because their family would take care of them. 4. My patients/clients feel that Hospice or a Palliative Care Centre/Unit is a place where people go to die. 5. My patients/clients feel that Hospice or Palliative Care means one gets no treatment. 6. My patients/clients feel that Hospice or Palliative Care treatment is not as good as other types of treatment in the hospital. 7. My patients/clients feel that Hospice or Palliative Care means giving up. 8. My patients/clients feel that Hospice or Palliative Care causes people to die before their time.

Questions from Appendix C: Full Summary of Findings - Healthcare and End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents

1. Advance Care Planning Answer with Yes or No. a. Do you have a written document that states the kind of medical care you would want if you could not speak for yourself? aa (HCPs). Do you utilize written documents that states the kind of medical care your patients/clients would want if they could not speak for themselves? b. Have you ever heard of such a document? c. Do you have a written document naming a person to make medical decisions for you if you are unable to make decisions for yourself? Cc (HCPs). Do you utilize written documents naming a person to make medical decisions for your patients./clients if they are unable to make decisions for themselves? d. Have you ever heard of such a document?

2. Social Support

If you had a serious illness (like cancer) that the doctors could not cure, and you could not take care of yourself,

311

i. My children would take care of me. ii. My spouse would take care of me. iii. Other family members would take care of me. iv. Friends would take care of me. v. Members of my temple/church would take care of me. vi. There would be no one to take care of me. vii. I wouldn’t have anyone to stay with me all the time.

3. Preferences for Care If I had a disease (like cancer) that the doctors could not cure, I would want to live as long as possible, i. even if I had to be on life support or a breathing machine. ii. even if my brain had stopped working. iii. even if I had to be fed through a tube iv. even if I were in severe pain.

If I had a disease (like cancer) that could not be cured, v. being comfortable would be more important to me than living as long as possible. vi. being out of pain would be more important to me than living as long as possible. vii. being at home would be more important to me than being in the hospital. viii. and I could be taken care of at home, I would still want to go to the hospital or the emergency room.

4. Healthcare Decision Making i. In my experience/opinion of Health Care environments, I/my loved one/people typically was/are the main person making decisions.

312 ii. In my experience/opinion of Health Care environments, typically my/my loved one’s/people’s family made decisions. iii. In my experience/opinion of Health Care environments, my/my loved one’s/people’s doctor and the Health Care Team made decisions. iv. In my experience/opinion of Health Care environments, my/my loved one’s/people’s family made decisions with the doctor & the Health Care Team. v. In my experience/opinion of Health Care environments, myself/my loved one/people and my/their family made decisions with the doctor & the Health Care Team.

5. EOL Decision Making i. If I were dying, I would want be the main person making decisions ii. If I were dying, I would want to have my family making decisions (without me involved). iii. If I were dying, I would want to make decisions with my family. iv. If I were dying, I would want my doctor and the Health Care Team making decisions (without me involved). v. If I were dying, I would want to make decisions with my doctor and the Health Care Team. iv. If I were dying, I would want my family making decisions with my doctor & the Health Care Team (without me involved). v. If I were dying, I would want myself and my family making decisions with my doctor & the Health Care Team. 6. Religion and Healthcare Decision-making

A. Do you consider yourself… a. Very religious b. Somewhat religious c. Not very religious d. Not at all religious

B. How often do you attend temple/church or other religious meetings? a. More than once a day b. Daily c. Once a week d. Two or more times/week

313

e. Few times a month f. Rarely or never

C. How often do you spend time in private religious activities such as prayer, meditation, or scriptural study? a. More than once a day b. Daily c. Once a week d. Two or more times/week e. A few times a month f. Rarely or never

D. i. If I were sick/when I have been sick, my religious views would influence/have influenced my decisions. ii. If I were dying, my religious views would influence my decisions. iii. If I were sick/when I have been sick, the religious views of Health Care Professionals would influence/have influenced their decisions. iv. If I were dying, the religious views of Health Care Professionals would influence their decisions. v. If I were sick/when I have been sick, the religious views of my family would influence/have influenced their decisions. vi. If I were dying, the religious views of my family would influence their decisions.

Open Interview Excerpts

1. How are decisions made to start or stop biomedical or traditional interventions? (Who initiates? Who is involved? Where is the discussion held? How is the discussion held?)

2. Who makes health care decisions: the doctor, the patient, the family, or some combination?

3. Who makes end-of-life decisions: the doctor, the patient, the family, or some combination?

4. Does religion affect your health care decisions? Would it affect your decisions at the end- of-life?

314

5. Does religion affect health care professionals in their decisions for/with their patients/clients? Does it affect their decisions at the end-of-life for/with their patients/clients?

Added to HCP version

2a. Who do your patients/clients feel makes health care decisions…the doctor, the patient, the family, or some combination?

3a. Who do your patients/clients feel makes end-of-life decisions… the doctor, the patient, the family, or some combination?

4a. Do your patients/clients feel that religion affect their health care decisions? Would it affect their decisions at the end-of-life?

5a. Do your patients/clients feel that religion affects health care professionals in their decisions for/with their patients/clients?

315

Appendix B - Statistics (graphs, charts and analysis)

Defining Key Terms: Informant Perspectives765

Figure 1 Definitions of “Health”

Figure 2 Sub-categories of multiple aspects of person included under “Health”

765 Text for this topic can be found in Appendix D.

316

Figure 3 Sub-categories of “Health” functionality

Figure 4 Causes of Health

317

Figure 5 Definitions of “Illness”

Figure 6 Causes of Illness

318

Figure 7 Definitions of Death

Figure 8 Definitions of Religion

319

Figure 9 Definitions of Healthcare

Figure 10 Definitions of End-of-life Care

320

Statistics from Ch. 2 “Shall We Tell the Patient?” Blocking Bad News in End-of-life and Health Information Sharing

What follows are comparative statistics between the three major cohorts and their healthcare providers drawn from two relevant sections of the questionnaires766 on the topics of

(1) beliefs about dying, truth telling and advance care planning, and (2) being medically informed. Initially I had separated the HCPs into their respective traditions, but on the advice of a Professor in Anthropology I collapsed them into one group in order to increase the statistical power.767 Three Jain HCPs responded, and the Tibetan Buddhist HCPs sample group was variable between three and four because some answers were invalidated by the informant answering inverted questions identically which indicated, to me, some type of interference with understanding those questions. The foreign HCPs cohort is miniscule in size, at only two, but I have still included them because I think adding their perspective is still somewhat informative despite lacking in statistical power. This is the version of the Likert scale that was used: (1)

Strongly Agree, (2) Agree, (3) Neither Agree nor Disagree (neutral), (4) Disagree, and (5)

Strongly Disagree. I will also mention that although Jain HCPs mostly care for Indians, there is variety among their patient populations with regard to cultural and religious demographics, and, similarly, Tibetan Buddhist HCPs also care for Indians and not just Tibetans.

766 See Appendix A for a full version of the questionnaire questions for both non-HCPs and HCPs. 767 Thanks to Prof. Jack Sidnell, the respondent for my fifth year doctoral colloquium, for this helpful suggestion.

321

Figure 11 Three Indic Religious Adherent Cohorts: Beliefs About Dying, Truth-telling, and Advance Care Planning

Analysis Beliefs about dying, truth telling and advance care planning – the three major Indic religious cohorts. In the first question of this series form the questionnaire which tests for comfort discussing death, there is only a minor difference between the Jains and Tibetan

Buddhists in their self-reporting on comfort talking about death, but Jains indicate having the most comfort talking about death followed by Tibetan Buddhists. The gap between Hindus and the other cohorts is greater with the Hindus indicating less comfort discussing death. I admit being surprised by the spread as I expected it to be Tibetan Buddhists reporting the strongest comfort with the subject of death as they have a strong emphasis on preparation for death by both contemplation and visualization, whereas Jains, who also prepare for death in advance, prepare for death more by way of ritualistic preparations such as through fasting and meditation.

My prior assumption that tradition-specific prescriptive religious approaches to death preparation would be paralleled by adherents’ descriptive reporting on this topic was defeated by this data.

322

For the second question on whether respondents would like to be informed if they were dying, the differences are very slight, and thus not very strong, but Jains and Tibetan Buddhists switch positions somewhat in this question. On the same logic of the prescriptive somehow matching the descriptive, for this question I was not surprised that Tibetan Buddhists most strongly want to be told if they were dying. If not necessarily demonstrating that the prescriptive influences the descriptive, I can say from my interviews that in general the Tibetan Buddhist informants discussed death (and transmigration) more than those from the other cohorts, whereas

Jains talk more specifically about death ritual, such as the fasting and immobilization found in sallekhana, rather than death itself. The Hindus who answered felt less strongly about wanting to be told they are dying, but only slightly.

In the third question on whether informants would tell their family if they were dying,

Jains report being the most inclined to do so, with a significant gap from the other cohorts who are almost identically less inclined. Next is question four on whether death is a normal part of life and although close to convergence, Jains most strongly feel this way. In question five, asking if death should be avoided at all costs, Jains most strongly disagree but there is a more significant gap with the Buddhists and Hindus disagreeing less strongly. Questions four and five are somewhat inverts to each other, but the fact that the answers are not exact mirrors shows that they were understood differently by informants based on being presented positively or negatively. In Questions six and seven there is a lack of inclination all around towards advance care planning (ACP) either by thinking of future medical decisions for oneself or in conversation with family, but the Tibetans reported being the least likely to engage in either form of ACP, less so with their families.

323

Figure 12 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients): Beliefs About Dying, Truth-telling, and Advance Care Planning

The data becomes very interesting indeed when we bring together the three main cohorts with all of the India-based HCPs in the study as there are several noteworthy dissonances. HCPs were asked to report how they think their patients would answer and are less convinced that their patients are comfortable talking about death, and also less convinced that patients would want to be told they are dying. HCPs equally but only mildly agree with the Hindus and Tibetan

Buddhists that patients would tell their families if they were dying. Two of the largest gaps show

HCPs as less convinced than non-HCP respondents that patients consider death as a natural part of life, and being neutral on their patients thinking that death is something to be avoided. Lastly, a third major gap shows HCPs being surprisingly more convinced than their patients that patients do ACP for themselves, but are neutral along with Hindus as to whether they do ACP with their families. ACP is in general not very common in the Indian healthcare landscape and the topic

324 will be expanded upon in the final chapter on decision-making based on more open conversations on the issue, as well as some media sources.

Figure 13 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients): Beliefs About Dying, Truth-telling, and Advance Care Planning

When all non-HCP and HCP data are aggregated, we have a larger sample group of adherents and get differences between self-reporting adherents and HCPs’ views of their patients. The largest gaps between the groups show: HCPs being neutral on their patients being comfortable discussing death, whereas adherents agree that they have comfort with this topic; adherents being more convinced than HCPs that they consider dying as normal; HCPs as again neutral on patients thinking that death should be avoided at all costs, whereas adherents disagree; and lastly, and perhaps most strikingly, HCPs are fairly convinced that patients engage in ACP whereas adherents rest between neutrality and disagreement.

325

Figure 14 Buddhist Tibetans and Tibetan HCPs (re: what they consider as the views of their patients): Beliefs About Dying, Truth-telling, and Advance Care Planning

Another analysis added foreign HCPs, a medical trainee and a Registered Nurse who were working and teaching respectively at the Tibetan-run charitable Delek hospital, to the

Tibetan Buddhist HCP and non-HCP groups. Although, as mentioned, there is not much power in a sample group of two, there still are some noteworthy dissonances: foreign HCPs are the least convinced that patients are comfortable discussing death and would want to be told if they were dying; and foreign HCPs, fascinatingly, most strongly agree that patients would tell their family they are dying.

326

Figure 15 Three Indic Religious Adherent Cohorts – End-of-life Decision Making – On Being Informed

Analysis Being medically informed in both healthcare and EOL contexts. We move to the next question series which includes two sets of inverted questions, asked consciously as a test for understanding. The answers are fairly symmetrical between inverted questions which indicates that these positive and negative versions of questions were understood similarly by respondents.

Among the answers of the adherent cohorts, we find some mild variation save convergence among cohorts that they would want to know everything if they were dying. However, when asked oppositely if they would want to know nothing if they were dying, the Jains disagreed and the other cohorts less so. The Jains were most strongly convinced they are fully informed in healthcare contexts, followed by the Hindus and lastly the Buddhist Tibetans.

327

Figure 16 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients) – End-of-life Decision Making – On Being Informed

In another analysis, again all HCPs together were set against the major adherent cohorts, and there are clear gaps on being informed, not being informed and knowing everything if dying.

HCPs groups do not show the symmetry between inverted questions as seen in the non-HCP cohorts: they are neutral about their patients being fully medically informed but agree that patients are not fully informed; they are less convinced than their patients that they would want to know everything if they were dying, but approaching disagreement along with Hindus that if dying they would want to know nothing. The asymmetry in HCP answers of inverted questions seem to be from their understanding questions differently in English when put either positively or negatively.

328

Figure 17 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients) – End-of-life Decision Making – On Being Informed

When the data of all non-HCPs are aggregated and placed against the Indian-based HCPs, we again have a larger sample group of adherents and notice very clear differences between self- reporting adherents and HCPs’ views of their patients. The symmetry between inverted questions remains within the adherent group, and the strongest dissonance between the groups is still seen in the first two questions. It is quite impressive that HCPs would admit to their patients not being fully informed, but is in accordance with some of their views with regard to withholding certain types of medical information or filtering and gatekeeping through families. HCPs are slightly less convinced that their patients would want to know if they were dying.

329

Figure 18 Buddhist Tibetans vs Buddhist Tibetan HCPs (re: what they consider as the views of their patients) vs Foreign HCPs (re: what they consider as the views of their patients) – End-of-life Decision Making – On Being Informed

Finally, we again bring together Buddhist Tibetans with their HCPs and foreign HCPs, remembering that the foreign HCP group lacks in statistical power. The foreign HCPs agree with local physicians that patients are not fully informed. The largest dissonance is found with foreign

HCPs disagreeing that patients would want to know everything about their condition if they were dying.

In summary, for the first set of questions Jain self-reporting show them as the most comfortable discussing death and telling their family if they were dying, and most strongly see death as normal and not to be avoided. Tibetan Buddhists most strongly report wanting to be told if they are dying but also reported being the least likely to engage in ACP. Most of the questions have large gaps between HCPs and non-HCPs except on whether if dying they would tell their family on which both agree. HCPs are much less convinced than non-HCPs, though, that their

330 patients are comfortable discussing death and would want to be told if they were dying. More large gaps between HCP and non-HCP informants show HCPs as less convinced that their patients see death as normal and do not think of death as to be avoided, but more convinced that their patients do ACP. HCPs are neutral on ACP being done by patients with their families. The greatest dissonances between the HCP and non-HCP cohorts are on the topics of comfort discussing death, with HCPs less convinced that non-HCPs are comfortable with this, and

ACP, with HCPs being more convinced that their patients engage in ACP than the non-

HCP informants reported.

In the second question series, all adherent cohorts indicated that they would want to know everything if they were dying and that they feel fully informed in healthcare contexts, but the Jains most strongly for the latter. HCPs, however, were dissonant from the non-HCP groups on three questions: they were neutral about their patients being fully medically informed but agree that patients are not fully informed. HCPs also were less convinced than the non-HCPs that they would want to know everything if they were dying. Tibetan and foreign

HCPs agreed that patients are not fully informed, but the foreign HCPs thought that dying patients at Delek Hospital would not want to know everything if they were dying, unlike the

Tibetan HCPs & non-HCPs who thought that dying patients would want to know everything.

331

Statistics from Ch.3 “I have this pain…” End-of-life Models of Care: South Asian Adherent Perspectives on Pain Management, Hospice Palliative Care and Medical Assistance in Dying (MAiD)

Figure 19 Three Indic Religious Adherent Cohorts – Pain Management at the End-of-life

Analysis

Using the Likert Rating Scale768 I asked laypeople in India from each major cohort769 eight questions related to pain management at the end of life, given the scenario of having an incurable illness like cancer, and having pain.770

The respondents feel that physicians would believe their experience of pain and would prescribe pain medication if they needed it. Although the Tibetan Buddhists tended towards ambiguity, the Hindus and Jains are not worried about being to afford pain medications they might need. Similarly, Tibetan Buddhists were ambiguous about whether they would be concerned about pain medication availability at a pharmacy, whereas the Hindus and Jains do not have this concern. Two questions had gaps between the Hindus and the other groups, with

768 Ranging from 1=strongly agree to 5=strongly disagree. 769 Twenty-three overall (N=23) with eight Jains (n=8), four Tibetan Buddhists (n=4), and eleven Hindus (n=11). 770 See Appendix A for full questions.

332

Hindus approaching disagreement that have fears of addiction or overdosing. The Tibetan

Buddhists and Jains tended towards agreement on having fears of addiction, whereas there was a mild difference between them on the fear of overdosing with the Jains tending towards agreement and the Tibetan Buddhists approaching ambiguity. More gaps were found around disclosing pain to others, with the Jains not wanting to reveal such pain to others, the Tibetan

Buddhists being ambiguous and the Hindus being more amenable to sharing their experience of pain. Most significant, though, is a cluster around agreement among respondents from all layperson cohorts that they would only take pain medicines when the pain is severe. This is concordant with the Jain normative emphasis on pain endurance discussed in chapter two on ritual death, and on the reported high pain thresholds of Tibetans. Although only minor variations, Jains most strongly agree on this, with Tibetan Buddhists next with less agreement and lastly Hindus.

333

Figure 20 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients) – Pain Management at the End-of-life

I then asked seven HCPs771 the same eight questions, but with regard to their approach to pain management with their patients. All but one were physicians, the other was the nurse mentioned earlier.

There are several interesting discrepancies between HCPs and non-HCPs. The most striking gap is that HCPs approach agreement that their patients could not afford pain medications, whereas the Tibetan Buddhists tended towards ambiguity and the Hindus and Jains feel they could afford pain medications. The next significant gap shows HCPs as quite neutral about whether they would prescribe pain medication only when the pain is severe, whereas non-

HCPs from each cohort are quite similar in their agreement that they would only take pain medication if their pain was severe. HCPs disagree slightly more than non-HCPs about not

771 N=7, Jains n=3, Tibetan Buddhists n=4

334 believing pain complaints of their patients, but disagree more strongly than all non-HCP groups on whether patients fear becoming addicted to pain medication. HCPs converge with Jains and

Tibetan Buddhists approaching neutrality on the fear of overdosing (fear of non-HCPs themselves overdosing, fear of HCPs of their patients overdosing), but Hindus are approaching disagreement that they fear overdosing. HCPs approach neutrality on the issue of patients fearing that they wouldn’t be prescribed pain medication they might need, whereas Hindus and Tibetan

Buddhists approach disagreement and Jains approach strong disagreement. Lastly, HCPs also approach neutrality on the issues of patients fearing pharmacies not having pain medications

(with Hindus disagreeing and Jains strongly disagreeing), and whether their patients would not reveal pain to others (with Hindus again disagreeing and Jains agreeing). In both questions,

HCPs are in concordance with the Tibetan Buddhist non-HCP cohort.772

772 In retrospect, these questions could have been asked differently to HCPs. In the chapter on bad news, the questionnaire excerpts for HCPs doubled each set of questions to ask the HCPs’ own opinion and then their opinion of their patients. The latter are what were used in the graphs on the logic that HCP views of patients might shed light on the accuracy of patient self-reporting. In this questionnaire excerpt, however, the questions were not doubled but rather HCPs were asked about their own opinions in five questions, and if they need to quell the fears of their patients in three questions. In this way, five of the questions address how HCPs approach pain management with their patients, such as whether they ever disbelieve the pain reported by patients, to compare patient and HCP perspectives. For example, non-HCPs and HCPs disagree that HCPs do not believe reports of pain. Three questions give some sense of the types of encouragement HCPs needs to give to their patients, such as with reporting pain, which align with the questions to patients about certain pain management fears that they might have. For example, there is some variation among patient groups as to hesitancy to report pain and HCPs are neutral as to whether patients need encouragement to report pain. I can’t say which approach is better, as each way tells us something important, but can say that there is asymmetry. My great interest in HCP pain management practices led to this approach in this section, but I could well have doubled the question set as in the other questionnaire sections. For example, question one could have been divided into: (a) I sometimes do not believe that patients are in pain and (b) my patients fear that I might not believe they are in pain. Despite allowing for feedback from every participant, and some feedback from an observer of two interviews, the asymmetry in how the HCP questionnaire sections were done shows the difficulty I had in developing the HCP version and the downfall of not validating questionnaires.

335

Figure 21 Preferences for the Place of Death (aggregated)

Figure 22 Religious Adherent Cohorts – Preference to Die at Home

336

Figure 23 Religious Adherent Cohorts – Preference to Die in Hospital

From among the options of home, hospital, nursing home or other, thirty-seven out of all fifty respondents in India, or seventy-four percent (74%, N=50, n=37), would prefer to die at home. The Tibetan nurse also chose hospital,773 and Surendra ji chose hospital as a contingency plan “if cannot be managed at home…discomfort of family. For example, at home difficult to manage.”774 Six would prefer to die in hospital, representing twelve percent of all respondents

(12%, N=50): three Hindus (twenty-five percent of the Hindu informants, 25%, n=12), one

Muslim (twenty-five percent of the Muslim informants, 25%, n=4), and two Tibetan Buddhists

(seventeen percent of the Tibetan Buddhist informants, 17%, n=12). Among the last group,

Emchee Desel laks says that among their patient population, the place of death is “hospital more.

Some say they wish to go home, most brought into hospital by family members. They are

773 DSL-042315-BRN-48 774 J-112614-J-008

337 apprehensive about what will happen to them at home.”775 Three chose “other” as their preferred place to die: the Jain nun, Keralan Christian Larvin who said it “depends,”776 and Kyap laks who prefers isolation for religious practice.

Two Hindus (seventeen percent of the Hindu informants, 17%, n=12) chose a nursing home for their place of death, one who mentioned that it would be dependent on “rent, based on system/coverage,”777 and my sole female Hindu informant.

This leaves us with ninety-three percent of Jain respondents (93%, n=14), seventy-five percent of Tibetan Buddhist respondents (75%, n=12), and fifty-eight percent of Hindu respondents (58%, n=12) preferring to die at home. From among the monotheistic adherents who engaged in the questionnaire, one hundred percent of Sikhs (100%, n=4), eighty percent of

Christians (80%, n=5) and seventy-five percent of Muslims (75%, n=4) prefer home as the place of death.

775 DSL-041815-BMD-45 776 C-021615-CNA-30 777 ND-110814-H-001

338

Figure 24 Three Indic Religious Adherent Cohorts – Exposure to Hospice Palliative Care

Of the non-HCPs, seventy-two percent of the Hindus (72%, n=11), seventy-one percent of the Jains (71%, n=7) and eighty percent of the Tibetan Buddhists (80%, n=5) had never heard of hospice, and fifty-four percent of Hindus, seventy-one percent of Jains and one hundred percent of Tibetan Buddhists reported never having heard of palliative care. Twenty-seven percent of Hindus, fourteen percent of Jains and zero percent of Tibetan Buddhists had heard a little about hospice, thirty-six percent of Hindus, fourteen percent of Jains and zero percent of

Tibetan Buddhists had heard a little about palliative care. Lastly, only twenty percent of Tibetan

Buddhists had heard a lot about hospice with zero percent from the other groups, and nine percent of Hindus, fourteen percent of Jains and zero percent of Tibetan Buddhists had heard a lot about palliative care.

339

Figure 25 Three Indic Religious Adherent Cohorts – Attitudes towards Hospice Palliative Care

Again using the Likert Rating Scale, I asked laypeople in India from each major cohort eight questions related to their attitudes towards hospice palliative care.778 The mean numbers show that on several points my informants, for the most part, hover around ambiguity: with regard to wanting and affording hospice or palliative care, its effectiveness and whether such services indicate giving up on the person and whether it leads to death coming faster. This is likely due to a lack of familiarity with such services as only one out of seven of my Jain non- physician respondents had heard of hospice or palliative care and all they had to go on was my brief description of such services. Tibetan Buddhists, however, were clearer in indicating generally that they would not utilize such EOL services and Hindus approach disagreement as to

778 Twenty-four (N=24) overall with eight Jains (n=8), five Buddhist Tibetans (n=5) except for questions three, four and five in which there were four (n=4), and eleven Hindus (n=11).

340 whether such EOL models of care hasten death. There was clarity on three questions, however: there is agreement among Jains and Tibetan Buddhists that people who enter into hospice or palliative care are in fact dying – with Hindus approaching ambiguity - and we see a similar spread on the point that they themselves would not need such services because their families would offer them EOL care. Significantly, there is a gap in responses on the question of people who receive hospice or palliative care not receiving medical treatment anymore, with Jains disagreeing and Hindus and Tibetan Buddhists both approaching neutrality on the issue. The Jain response is in accord with the fact that although to be a candidate for hospice or palliative care one needs to not be receiving certain types of medical interventions, such as CPR, this does not mean that medical treatment ceases. Pain and symptom control at the very least are medical interventions that are still provided to the hospice client. The responses by the other groups again can likely be explained by a lack of familiarity with such services.

341

Figure 26 Three Indic Religious Adherent Cohorts and HCPs (re: what they consider as the views of their patients) - Atttitudes towards Hospice Palliative Care

I then asked seven HCPs (N=7)779 eight questions about hospice palliative care. All but one were physicians, the other a nurse. There are some overlaps and gaps between HCPs and non-HCPs. HCPs are similarly in agreement with Jains and Tibetan Buddhists that EOL care would be unnecessary because family would take on the EOL care – with Hindus approaching neutrality. HCPs are neutral, along with Hindus, on the issue of hospice palliative care being a place for people to die – with Jains and Tibetan Buddhists being in agreement on this point.

HCPs approach neutrality along with Hindus and Tibetan Buddhists as to whether hospice palliative care excludes medical treatment – Jains disagree. HCPs are ambiguous on hospice palliative care being not as good as other types of medical treatment, on hospice palliative care

779 Three Jains (n=3) and four Buddhist Tibetans (n=4).

342 indicating giving up on the person, and on whether hospice palliative care hastens death –

Hindus approach disagreement. The gaps are seen when HCPs report that their patients would want hospice palliative care – Hindus and Jains are neutral, Tibetan Buddhists approach disagreement. Also, HCPs agree that their patients could not afford hospice palliative care, whereas Jains and Tibetan Buddhists are neutral and Hindus approach disagreement. This point is moot in settings where free services are offered, such as at the hospices on the South West coast.780

780 Again, as explained within the pain management statistics section, some of these questions could also have been asked differently such as question three and four which have the HCPs considering their own opinion of their patients, rather than asking what they think of how their patients feel about such issues as in the other questions.

343

Figure 27 HCP & non-HCP cohorts - Healthcare Decision Making: who makes decisions? (questionnaire)

Figure 28 All Informants - Healthcare Decision Making: who makes decisions? (questionnaire, aggregated)

344

Figure 29 All Informants - Healthcare Decision Making: who makes decisions? (verbal answers, aggregated)

Analysis Here will be a brief explanation of the data set generated from the questionnairre specifically with regard to the players in healthcare decision making. First, when the non-HCP and HCP cohorts are taken separately we see some mild dissonances. On the possibility of patients alone, or patients, families and healthcare teams together, being the main players in healthcare decision making, non-HCPs approach neutrality whereas HCPs approach agreement that these are the main players. On families or healthcare teams making decisions alone on the patient’s behalf, the results are reversed with HCPs approaching ambiguity and non-HCPs approaching agreement that these are the main players. Since by the verbal answers of all cohorts, the third most popular configuration was HCPs alone making healthcare decisions for

345 patients, there is come concordance between the non-HCP answers with the Likert-scale generated data. Lastly for the HCP and non-HCP cohorts treated separately, when considering families and healthcare teams making decisions together on behalf of patients, HCPs approach agreement whereas non-HCPs are between agreement and neutrality.

When we look at all of the data aggregated together, not subdivided into the non-HCP and HCP cohorts, the informants as a whole are similarly tending towards ambiguity on the possibility of patients alone, or patients, families and healthcare teams together, being the main players. For the other three options given, the family alone, or the HCPs alone or the family with the healthcare team, they are all very closely similar in approaching agreement on these as options. So, patients alone and collaboration between all players are less preferred. These data from the Likert scale answers are discordant with the verbal answers which gave collaboration as the second most popular option and shows the importance of collecting both types of data since informants answer differently based on the way the questions are asked and the way in which they are asked to answer, by a number scale or in words.

Figure 30 All Informants - EOL Decision Making: who makes decisions? (verbal answers, aggregated)

346

Figure 31 All Informants - Healthcare vs End-of-life Decision Making: who makes decisions? (verbal answers, aggregated)

Ranking of players in Ranking of players in Healthcare Decision Making End-of-life Decision Making (n=42, 82 answers) (n=39, 49 answers) 1) Context-dependence (22%) 1) Collaboration (27%) 2) Collaboration (17%), HCPs 2) Physician (16%) (17%) 3) Family and physician (10%) 3) Family and physician (14%)

4) Patient (8%) 4) Not the patient (10%)

5) Family (7%) 5) Context-dependence (8%)

6) Patient and physician (6%) 6) Family (6%)

7) Not the patient (4%), patient 7) Patient (4%), Divinity (4%) with family (4%) 8) Not physician (2%) 8) Patient after permission from Guru (2%), patient or family (2%), combination but typically patient (2%), family then physician (2%), physician or family designate (2%) 9) Patient or HCPs (1%), physician - or senior family representative (1%), include clergy (1%)

347

Figure 32 Non-HCPs vs HCPs (personal view) vs HCPs (re: what they consider as the views of their patients) - End-of-life Decision Making: who makes decisions? (questionnaire)

Figure 33 All Informants - End-of-life Decision Making: who makes decisions? (questionnaire, aggregated)

348

Informants were asked who makes EOL decisions, and given five possibilities: patient, family, physician and team, family with team and patient, family and team. They answered using a five-point Likert scale from strong agreement to string disagreement. HCPs were asked to answer both as to what they think patients would choose and what they themselves think is the case. HCP answers for their patients and themselves were similar in agreeing that patients make

EOL decisions, but non-HCPs approached neutrality on this. With regard to family making EOL decisions, non-HCPs and HCPs’ view on how their patients might answer were both neutral but

HCPs, in their own view, agree that families make EOL decisions. Non-HCPs and HCPs both approach neutrality on physicians and teams making EOL decisions, but HCPs think that their patients would agree that HCPs make EOL decisions. Non-HCPs are neutral on families and teams making EOL decisions together, whereas HCPs agree that they and their patients both think that families and teams make EOL decisions together. On collaboration between patients, families and teams in EOL decision making, there was close convergence in that non-HCPs and

HCPs considering their patients’ views agree on collaboration, with HCPs themselves agreeing more strongly with this.

In the aggregated data considering all informants together, all answers approach neutrality except for agreement on the option to collaborate between patient, family and healthcare team. When comparing questionnaire answers with the ranking of players in the verbal answers, both aggregated data, there is alignment on this one configuration since the most popular answer was also collaboration. Again, despite being given only one type of collaboration, that between patients, families and healthcare teams, about half of the informants who chose this option in their verbal answers gave specific and various configurations.

349

Figure 34 All Informants - Advance Care Planning (aggregated)

NB: ACD=Advanced Care Directives. POA=Power of Attorney (for Personal Care).

Interviewees who engaged with the questionnaire were asked for “yes/no” answers to the four questions discussed above: whether they used or heard of ACP documents, and whether they used or heard of SDM appointment documents.781 Of the thirty-four (n=34) non-HCPs who answered on whether they had used ACP documents, only one (1) said “yes” and the rest (33) said “no.” Of the thirty-three (n=33) non-HCPs who answered on whether they had heard of

ACP documents, only six (6) said “yes” and the rest (9) said “no.” As for SDM appointment documents, all non-HCPs said they had not used them (n=34) but on knowing of such a document informants were close to split with eighteen (18) saying “no” and the rest (16) saying

“yes.”

781 See Figure 8 in Appendix C for graph.

350

The number of HCPs was fewer and of the seven (n=7) that answered on the usage of

APC documents, one (1) had and six (6) had not, but were almost split on knowing about APC documents with three (3) aware of them and four (4) who were not. For POA documents the numbers were almost identical with one (1) HCP who had used a POA document and six (6) who had not, and an even split of three (3) HCPs on knowing about POA docs. For non-HCPs, POA documents are more known than APC documents. For HCPs, most had never used APC or

POA docs, and they were fairly split on being aware of their existence.

Figure 35 Non-HCPs vs HCPs (re: what they consider as the views of their patients) - Social Support (questionnaire)

From the seven questions asked in the questionnaire, on a Likert scale ranging from strong agreement to strong disagreement, around thirty non-HCPs (n=~30) were quite aligned with the seven HCPs (n=7) on five questions. On children, spouses or other family taking care of them while dying, all were very close to agreement. There was only a mild variance on the possibility of friends providing EOL care with HCPs approaching neutrality and non-HCPs

351 approaching agreement. On temple members giving EOL care, both groups were neutral. The last two questions were divergent between the groups. On the possibility of there being no one to provide EOL care, HCPs were neutral but non-HCPs strongly disagreed. On the final question of the possibility of there being no one to stay with the dying person all the time, HCPs were again neutral and non-HCPs disagreed. Most noteworthy are that HCPs are less sure if their patients would have people to care and stay with them when dying, whereas non-HCPs feel that they would. All agreed that children, spouses or other family take care of the dying.

Figure 36 Non-HCPs vs HCPs (personal view) vs HCPs (re: what they consider as the views of their patients) - Preferences for Care at the End of life (questionnaire)

352

Figure 37 All Informants - Preferences for Care at the End of life (questionnaire, aggregated)

The questionnaire gave quantitative data on EOL care preferences. Non-HCPs who answered, which hovered around thirty-two (n=32), disagreed that life-support, living beyond brain-death and tube-feeding would be chosen for the end of their life. They were ambiguous about living in severe pain, and getting emergency care in a crisis, at the end of life. However, non-HCPs agreed that comfort is more important than prolonging life, and that home would be preferable for the location of dying. HCPs who answered, which for most questions was five of them (n=5), gave scoring on what they think patients would want for themselves, as well as what they would want for their patients. There was alignment on these two perspectives on the topic of life-support, which was neutral, on brain-death where there was disagreement that such a state would be chosen at the end of life, on tube-feeding which was or came close to neutrality, and on dying at home which approached neutrality. On living with severe pain at the end of life, HCPs

353 thought that patients would be ambiguous on this, and disagreed that they would want this for patients. HCPs agreed that patients would choose comfort over prolonging life, but more strongly agreed that they would wish this for their patients. On going for emergency care in a crisis at the end of life, HCPs thought that patients would be neutral on this but disagreed that they would want this for their patients. HCP answers imagining what patients would choose and answers from non-HCPs align on several points such as disagreement on living with brain-death, neutrality on living with severe pain and going for emergency care at the end of life, and agreement on comfort over prolonging life.

Two questions on EOL pain/comfort were quite similar but inverted and tests whether informants answered differently depending on the way the question was framed. The first asked if they would want to continue to live but in severe pain, and the other asked if they would choose comfort over prolonging life. It might be expected that the ranking scale scores would simply be flipped, but this was not the case. Non-HCPs, HCPs speaking about what their patients might want, and the aggregated data showed informants as neutral on the pain question, but agreed on comfort. For HCPs on what they would want for their patients showed disagreement on pain and strong agreement on comfort. It seems that overall the questions were not treated as inverts but as quite different questions despite being essentially the same in meaning.

When the data from the HCP and non-HCP cohorts are aggregated, the results closely approximate the non-HCP data on its own. Informants overall disagree that life-support and being medically maintained after brain-death would be worthwhile for the sake of merely lengthening life. On tube-feeding, living with severe pain and getting emergency care at the end of life, informants are ambiguous. On the points of comfort superseding length of life and being at home while dying, informants agreed overall.

354

Statistics on Religion and Healthcare Decision-making Figure 38 All Informants - Level of Religiosity

Figure 39 All Informants - Religious Attendance

355

Figure 40 All Informants - Personal Religious Practice

Statistical data was generated from three questionnaire questions probing how informants view their own level of religiosity. This can give some advance context for the next sections on the influence of religion on healthcare and EOL decision making by having a sense of how informants in this study self-report their personal involvement in religion. The questions ask how religious they consider themselves, how often they attend religious places or events, and how often they engage in religious activities privately. Thirty-nine (n=39) informants answered the questions.

When self-reporting on how religious they consider themselves, despite there only being four responses (very religious, somewhat religious, not very religious and not at all religious), some gave answers that were in-between very/somewhat religious and somewhat/not very religious. Most answered with either very religious or somewhat religious, evenly split and making up more than half. The remainder were almost evenly split between the four remaining

356 possibilities.

Informants were asked how often they attend a place of worship or religious events, and chose between six responses (more than once a day, daily, weekly, two or more times weekly, few times per month and rarely or never). The top two answers were very closely split between daily and rarely or never. The next most popular answer was a few times a month, and there was a close to even split between two or more times a week and weekly. The fewest answered with more than weekly, which was a new category that some chose between weekly and two or more times per week.

Lastly, with the same six possible responses, infortmants were asked how often they spend time in private religious activities such as prayer, meditation or scriptural study. Almost half said daily and a quarter reported more than once a day. The next most said rarely or never, and there was a close split between the remaining possibilities (including, again, the new category between weekly and two or more times per week).

357

Statistics on Influence of Religion on Healthcare Decision Making Figure 41 All Informants – Are People/Patients Affected by Religion in Healthcare and End-of-life Decision Making?

Figure 42 All Informants – Are HCPs Affected by Religion in Healthcare and End-of-life Decision Making?

358

Figure 43 Chart Comparing People/Patients and HCPs

Does religion The Person/Patient HCPs influence healthcare (n=46) (n=44) or end-of-life decision making? Yes 54% 16% No 22% 45% Split (HC/EOL) 9%782 11%783 Unsure/Depends 17% 27%

Figure 44 All Informants – Does Religion Affect Healthcare and End-of-life Decision Making?

782 Four informants had split answers (n=4) on the influence of religion on non-HCP decision making in: Healthcare: Yes 1, No 2, Maybe 1 EOL: Yes 3, No 0, Maybe 1 783 Five informants had split answers (n=5) on the influence of religion on HCP decision making in: Healthcare: Yes 1, No 2, Maybe 2 EOL: Yes 3, No 1, Maybe 1

359

In the questionnaire, informants answered six questions by the Likert Scale on the influence of religion on decision making, three in the context of healthcare and three for EOL care. Close to forty informants answered, and there was agreement that religion would affect their own healthcare decision making, HCP healthcare decision making and the EOL decision making of families of patients. There was neutrality on whether religion would affect families in healthcare decision making, and on whether religion would impact EOL decision making for themselves and HCPs.

When comparing these to the verbal answers, since the majority of informants who gave verbal answers felt that religion did have an impact on healthcare and EOL decision making, there was alignment on healthcare decision making since the questionnaire results agreed with this. However, on EOL decision making there was neutrality in the questionnaire results. Too few answered on family decision making to make a good comparison, so having the questionnaire answers is helpful. On HCPs there was dissonance since despite the majority of informants who gave verbal answers indicating that they feel that HCPs are not influenced by religion in their decision making, questionnaire answers showed informants indicating agreement that they thought that HCPs are influenced by religion in healthcare decision making and were neutral on EOL decision making.

360

Appendix C: Full Summary of Findings - Healthcare and End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents

This appendix explores healthcare and end-of-life (EOL) decision making and has four major sections. The first section will discuss healthcare decision-making writ large, and the next will specifically focus on end-of-life decision-making. 784 The third section will focus on personalized decision making at the end-of-life and include such issues as decision makers, advance care planning, social support, and care preferences. The final section will move into the potential influence of religion on healthcare and EOL decision making, and in fact was the initial research question and thereby the major impetus for this study as a whole. It was very important to get informant perspectives on the topic of healthcare and EOL decision-making since this was not a hospital-based study and therefore I didn’t have access to real-time discussions between providers, patients and their families. Because of this, this appendix will be slightly different in style from the chapters because it will emphasize informant voices and have less legal and textual analyses as compared to the chapters. I also found value in everything informants had to say on the topics included within healthcare and EOL decision making, such as the great variety shown in their understanding of what is meant by decision making itself and what counts as religion’s influences on decision making, which has added to the length of this appendix.

784 These sections will be subdivided according to questions asked in the open interviews, which produced the most discussion on the topics, as well as extra commentary provided by informants when asked questions to be ranked using the Likert Scale in the questionnaire. Despite being deemed by myself as crucial questions for this study, these questions were asked at the end of the interviews, at which time the interviewees were likely not as sharp. Regardless, I was still able to get many good responses. Combination questions did not get as good uptake, with the initial question being answered well but the others not as well. Multi-part questions similarly were not answered as well, such as when asking about healthcare decision-making in general versus that at the end-of-life which had many informants just answering that the second question has the same answer as the first.

361

As well, because some of the questions are among the most sensitive of those asked of informants, almost all identifiers and contextualizing narratives describing informants and the interviews will be absent throughout this appendix.

(1) Healthcare Decision-making

In the open interviews, I explored the process of healthcare decision-making in general by asking how decisions are made to start or stop biomedical or traditional interventions. The question itself gave some guidance to the interviewees by explicitly inquiring as to who initiates and who is involved in such discussions, and the location and manner of such discussions.

During the questionnaires I asked informants about who makes healthcare decisions. Forty-seven of the fifty informants (n=47) spoke to the topics below and I have brought together the answers from the open and closed parts of the interviews under the broad themes of process and players, and categorized further under relevant sub-themes. Some statistics will close the section.

Process

Dr. Shugan Jain gave the purpose of healthcare decision-making as a process which is used to “make a good choice.”785 A simple statement, to be sure, but I think one which holds great significance. What is a “good” decision? What if there are multiple possible “good” pathways? If we approach this in a utilitarian way, simply as hoping to achieve maximal benefit for the most number of people, we might say that a “good” decision is one that the most number of stakeholders feel is ethically justifiable. Or, at least, one with which most are comfortable with.

785 ND-111014-JPHD-002

362

As seen listed above this section, twelve distinct themes arose that related to the process of healthcare decision making, despite only two of them being explicitly mentioned by the interviewer: discussion initiation and location of discussions.

Although explicitly mentioned in the question, very few informants specifically spoke to who it is that initiates healthcare discussions at times when decisions need to be made, and three out of the four happened to be Sikh merchants. A Tibetan physician in Dharamsala, Dr. Tenzin

Lhundup, said that “most initiated by doctors because mostly patient doesn’t know of their conditions.”786 A Sikh merchant in Dharamsala agrees with this point: “Doctor starts asking

‘what is problem?’”787 However, Mr. Gurvinder Singh, another Sikh merchant in Dharamsala known locally as “Bobby,” stated that “not particular doctor starts. Sometimes we start conversation as to what we think is right, after certain medicine we say this is problem etc.”788

Our third Sikh merchant, this time in New Delhi, affirms that there are times when it is not the healthcare team who initiates discussions as “started sometimes by family.”789

Of the twelve sub-themes identified regarding healthcare decision-making processes, the most number of answers, thirteen out of thirty-four (n=13, 38%), brought up the location and privacy of discussions. Considering both processes and players in healthcare decision-making, among the twenty-five sub-themes this topic also had the fourth-most number of informants to bring it up. This indicates to me that the issue of the location and privacy of discussions is of some increased importance to study participants, but among the twelve participants who discussed privacy there was an equal split between those who think there is privacy (n=5, 42%) and those that think there is little privacy (n=5, 42% including two foreign HCPs), with the

786 DSL-040115-BMD-37 787 DSL-042015-S-46 788 DSL-041715-S-44 789 ND-042815-S-49

363 remaining two informants mentioning that there could be privacy in healthcare discussions, but not always (n=2, 17%).

A Christian in Cochin said that such discussions are held “in doctor’s room,”790 as with

Mr. Tsering Norbu , a Tibetan translator at the LTWA in Dharamsala, who gave the “doctor’s office”791 as the location of medical conversations. Mr. Lobsang Rabsel, the Deputy Director of the Tibetan social agency Lha in Dharamsala, mentioned that the local “Delek Hospital have doctor’s office, family can visit there, doctor tells.”792 Both a physician, Dr. Tenzin Lhundup, and a nurse practicing at Delek affirmed this respectively by saying that discussions are held

“mostly privately in office or no one around”793 and that “doctor and patient’s attendant…meet here in office in private.”794 A Sikh merchant in New Delhi stated that conversations occur

“either at clinic or at home, patients and family, in private room or doctor’s office in hospital.”795

Some think that privacy is lacking in healthcare discussions. Larvin Sharon of Cochin gave an extreme and heart-wrenching account of both privacy lacks and breaches from her perspective of being in hospital as a person who is of the third gender:

In front of me in bed, they were talking, no in private room. Always keep saying to doctor “please…don’t want.” Always a person in between me and doctor. “Want to talk to you privately,” then stand outside. “I need more privacy, why do I have to ask?” Nurse was curious, then all read medical reports, they talk, discussion, then laugh. Different expressions if I walk through hallway, all reactions. Really curious what’s going on, infected by AIDS/ebola, all want to know…“she is just sick!” If I am infected with serious illness, facial expression so sad, empathetic/sympathetic, some laugh “this you deserve!”796

Not only was Larvin ji’s privacy disrupted in healthcare conversations, something she knew she was entitled to and advocated for on her own behalf, but it sounds as if the confidentiality of her

790 C-021015-C-029 791 DSL-040415-B-39 792 DSL-032515-B-34 793 DSL-040115-BMD-37 794 DSL-042315-BRN-48 795 ND-042815-S-49 796 C-021615-CNA-30

364 medical records might well have been compromised also if by “all read medical reports” she meant that HCPs outside of the circle of care were accessing her chart. The stigmatizing of

Larvin ji as someone outside rigid gender norms manifested through what she perceived as laughter towards her and faces made at her, implicit presumptions as to her sexual orientation from which further assumptions of her having a communicable disease arose with an added layer of disdain from those who see her presumed serious illness as punishment. In general she recounts an overextended curiosity in her which I also experienced in real-time during our interview. Such accounts from Larvin ji, my sole transgendered informant, give painful context to some of her experiences and both distressed and inspired me enough to immediately plan for a future advocacy anthropology research project examining the experiences of people who are transgendered in India navigating health care systems with the hope of raising awareness of such mistreatment and finding system-level solutions to help improve health outcomes for these communities. There are concerns with privacy in Dharamsala as well, with a Sikh sharing that the location of healthcare discussions is “beside bed.”797 Another Delek hospital physician, Dr.

Tenzin Tsundue, concurs that for such conversations it “happens at bedside, no separate room. If have room, even, when call them to come may have idea hearing something bad…may have that notion. Try to be best privacy in that context as possible.”798 Two visiting HCPs from North

America do not agree that privacy or confidentiality799 are given due importance at Delek. A foreign medical trainee stated that “to best of my knowledge, there is very little privacy/time devoted to the making of these decisions.”800 A foreign nurse commented that “confidentiality is not of any concern at Delek. Many patients are in the same room discussing their condition. Next

797 DSL-042015-S-46 798 DSL-040815-BMD-42 799 I distinguish privacy as being with regard to access to the person themselves versus confidentiality being access to information about the person. 800 DSL-040315-CMD(c)-38

365 patient is put two feet away from the current patient, told their diagnosis and what they need and script while another patient is lying there prepped and a third patient is lined up at the door with the door open.”801 In this nurse’s account, patients have neither privacy during treatment nor confidentiality with regard to their health conditions and treatment plan.

A couple of informants allow for the possibility of privacy but not in a definitive way.

Prof. Kamala Jain, a Jain in New Delhi, stated that healthcare discussions are done “not necessarily privately. Kind of atmosphere like family sits and take decisions.”802 Mr. Gurvinder

Singh or the Sikh merchant known in Dharamsala as “Bobby,” contexualized his response by saying that depending on the content, healthcare conversations take place “sometimes in front of patient. Sometimes doctor finds important to hide these things from patient, then in his chambers.”803

After privacy, the next most popular theme in answers regarding healthcare decision making, nine out of thirty-four (n=9, 26%), had to do contacting family when there is new medical information to share. Some participants who discussed family contact gave suggestions as to the order of contacts when sharing new healthcare information, and all but one said that the family should be first point of contact when there is new information to share. The Tibetan nurse at Delek hospital mentioned that part of their process involves contacting a patient’s close one if their health status changes: “If patient not good, call attendant and explain ‘prognosis not good, what do you want to do?’ Then they say ‘whatever you can do,’ said by attendant.”804 Mrs. Anu

Bagal, a Hindu in Delhi, stated that “doctor talks to family, family to patient, then they take a

801 DSL-042915-RNNA-50 802 D-020415-J-026 803 DSL-041715-S-44 804 DSL-042315-BRN-48

366 solid decision.”805 A Jain doctoral candidate in Jaipur stated similarly that “ultimately, family and doctor talk, then talk to patient.”806 Some others did not include the patient among those who receive new medical information. A Hindu in Jaipur said that “family take decision about me, doctor must consider family. First will ask family, then take decision.”807 Dr. Tenzin Lhundup, a

Tibetan physician In Dharamsala, stated that the information starting-point is with the physician then “tell relatives. Mostly relatives reluctant to tell patient, don’t want them to know. When we think patient wants to know, encourage relative to tell them.”808 Another Tibetan, bakery-owner

Mr. Dolma Kyap, stated that teams must “wait for right moment, real loved ones first - like that.

Main condition not to hurt. Minimum discomfort to patient mind.”809 For Dolma la, it seems that concerns with the mental and emotional well-being of the family and patient trump other concerns such as a speedy delivery of information for the sake of starting discussions with regard to treatment alternatives. Guest-house cook Saleem Saleem stated that “mother, father, brother decisions. Wife later, last.”810 Saleem ji has a fascinating perspective that parents and siblings outrank a spouse in terms of points of contact, and although given in a gendered manner, from this statement it is not clear if he would explain similarly for a female patient and their husband.

Dr. Shugan Jain, director of the International School for Jain Studies in Delhi, thought that family dynamics can influence the order of contact in information sharing:

India system, ‘till twenty years ago, joint-family system. Head of family, depends on knowledge of chief of family. Now no joint-family. If wife not there, then children, help from his brothers. Depends on relationship. Wife relies on family members who are physicians.811

805 D-020515-H-027 806 J-112114-JPHDABD-006 807 J-121814-H-018 808 DSL-040115-BMD-37 809 DSL-040615-B-40 810 J-111714-M-004 811 ND-111014-JPHD-002

367

For Shugan ji, the head of the family doesn’t necessarily lead decision making as this mainly depends on how knowledgable they are with the issues at hand. Unlike Saleem ji, Shugan ji gives a different order of family involvement starting with a spouse, then children followed by siblings. He also adds that the main decision maker, starting with the wife, depends on relatives who have expertise as medical doctors. Only one informant thought that the delivery of new medical information should “start from patients themself, then person’s family and also nurses and doctors.”812

Some other themes arose but have fewer informants that mentioned them. A couple of respondents indirectly referred to a focus on the autonomous patient in healthcare decision making such as a Muslim in Jaipur, Mr. Abdul Rauf Mirza, who stated that “anyone can make decisions if suffering from problems”813 and Dr. Tenzin Tsundue who mentioned that in healthcare discussions “doctor, nurses involved.”814 Both seem to be inferring that the decision- making authority, in their view, does not rest on the side of HCPs. Three informants mentioned that patients are not included in decision-making. Dr. Shugan Jain stated that they “don’t talk much in India. Didn’t know history, complications.”815 In his account, referring to a particular admission of a specific person, it seems as though a medical history was neither part of the process of assessing the patient nor in deciding how to proceed. The same Christian in Cochin who suggested that there is privacy in healthcare discussions also thought that they are held “not in front of patient.”816 The visiting foreign nurse in Dharamsala had quite a lot to say about the lack of patient participation in decision-making at Delek hospital:

812 DSL-040415-B-39 813 J-121314-M-016 814 DSL-040815-BMD-42 815 ND-111014-JPHD-002 816 C-021015-C-029

368

Very hot topics like consent are not of any concern at Delek. Getting consent for procedures is unheard of, they don’t have consent forms, and patients have a blind trust in physicians and health care professionals. In [my region] that wouldn’t fly…everything is signed, patients in [my region] are more engaged, look up procedures, opt-in and out based on what they have heard. Here, whatever the doctor says, goes. Most of the time, like for endoscopic procedures, the doctor told them to come in due to gastrointestinal symptoms and patients don’t ask questions…just get it done. Twice I saw patients who should have been sedated, one a monk. The doctor specifically said, “he doesn’t need it because he is a monk,” but he was gagging. The question of pain wasn’t even asked, he just assumed a high tolerance.817

By this nurse’s account, patients are neither informed nor have their consent or refusal sought for treatments as they are not proposed by physicians but simply ordered. The nurse also noted a vast difference in the level of health literacy between the patient population in north India and that seen in their region in North America. Also in their home location, patients who undergo procedures involving passing something down the throat, such as one of various scopes, would typically receive at least mild sedation both for the sake of the comfort of the patient and the success of the procedure.

Sole outlier informants brought up a few other relevant themes. Dr. Shugan Jain mentioned that there is no determination of substitute decision-makers, and reinforces that decisions are made simply by following directions given by the clinician: “Bad in India. Do not discuss [who the decision-makers are], go by advice of doctor.”818 Next is the Junior Assistant to the personal traditional medical physician to His Holiness the Dalai Lama, Dr. Y.K. Dhondue, who gave a thorough reckoning as to how decision-making is impacted by both traditional and biomedical healthcare systems:

Facing problem - difficult decision - many cancer patients…if tumour in body allopathy system need to take pieces, test if cancer to confirm, biopsy. Some people ANC819 - kind

817 DSL-042915-RNNA-50 818 ND-111014-JPHD-002 819 Absolute Neutrophil Count. “Neutrophils are produced in the bone marrow… The number of neutrophils in the blood is expressed as absolute neutrophil count (ANC). An ANC below 1,000 per microliter is called neutropenia. ANCs less than 500 per microliter significantly increase the risk of infection. In cancer patients, frequent blood tests

369

of cancer test. Liquid from part, another method to confirm of cancer or not. After test these done then makes more infection and more growing and spreading to other parts. Allopathic - before treatment need to confirm, then decision to take treatment. In our experience, in traditional system, biopsy danger, makes more infection, inflammation, more problem - one problem, another… After making confirmation for cancer, many patient face problem. Many don’t…take chemo from allopath…only need to take Tibetan medicine…pills. One hundred percent cannot control cancer cells - fast spread to other parts, danger. Some patient ask traditional doctor if should take chemo or not, difficult decision. If say “don’t do,” then patient after 1 month or 2 month cancer spread in other parts then complain: “Oh, when we came here you can give us medicine, then you said don’t have to take chemo, now spread. Now allopathic said too difficult to treat.” This is problem. If some patients don’t like chemo or radiation, if tell them “it is important you should take same time as Tibetan medicine,” then after some people taking chemo three, four, very side-effect. Some patient after two to three cycles one eye completely blind, lose hair, palm become darkness, body immune system down, loose motion, more pain, weakness then complain “we don’t like chemo, you said we take, then mind-body worse.” Nowadays we say if you take or not up to you, your decision because you are patient. We giving medicine for cancer and prevention for other parts and all body immunity, holistic we give meds, other treatment whether take or not up to you…820

Dr. Dhondue first explains that biopsies in biomedicine can actually exacerbate the chief complaint and cause other problems by the nature of the diagnostic tool. Dr. Dhondue also elaborates on how they as traditional medical practitioners are often asked to weigh in on biomedical treatments for serious illnesses, which has put them in an awkward position regardless of whatever suggestions they might give patients. Previously they have encouraged patients to engage in biomedical cancer treatment in tandem with Tibetan medicine. More recently, however, they tend to stay more firmly within their own scope when treating a serious illness such as cancer with Tibetan medicine, and deflect the burden of decision-making for biomedicine back to the patients themselves. Lastly is Dr. Tenzin Desel from Delek Hospital in

Dharamsala who stated that for the sake of “many illiterate elderly with little knowledge of

are performed to assess WBC [white blood cell] count and ANC to monitor the body’s response to cancer treatment… Chemotherapy, aimed at treating cancer, is one of the most common causes of neutropenia or abnormally low neutrophil count. Chemotherapy-driven neutropenia can make patients prone to infections and hence needs to be monitored and managed effectively… In cancer patients, ANC is a reflection of the immunologic status of the patient in response to chemotherapy.” Cheriyedath, 2017. 820 DSL-041115-BND-43

370 modern medicine” they “try to explain as much as possible. Due to lack of time and huge number of patients, have to finish up quick. Sometimes do miss to explain them, later [they] ask “why have to eat this?”821 Tenzin la explains that both literacy in general and health literacy in particular impact healthcare decision-making when working with the elderly. Despite doing their utmost to share medication information, physicians are pressed for time due to heavy case-loads which shortens visits and leads to some information sometimes being missed, which further leads patients to subsequently ask for clarification as to the reasons behind being prescribed certain medications.

Players

In the open part of the interviews, I asked informants who makes health care decisions: the doctor, the patient, the family, or some combination. In the closed part of the interviews, I gave five different possible decision-making configurations involving the patient, the family and the healthcare team: patient-led; then, family-led, HCP-led, and family with team, all without the patient; and lastly, everyone together. Informants gave some of their own configurations as well and, as such, this section has been divided into thirteen sub-themes to account for the variations on stakeholder roles involved in healthcare decision-making. The discussion on stakeholder roles involved in healthcare decision-making will start with the patient and move outwards based on the closeness of relations with the family next, and so on. Although only forty-seven informants answered on this topic, some gave more than one answer, which brought our total answers to eighty-three (83).

Seven informants, or eight percent (8%) of the answers, gave the patient as the main decision-maker. Mr. Sharad Sharma, a Hindu museum owner in Jaipur, stated that patients can

821 DSL-041815-BMD-45

371 make their own healthcare decisions, but only “if they have sense” 822 and thus gives mental capacity as a fundamental requirement. A Sikh in Delhi stated that “almost patient make decisions, help from all sides given,” 823 placing the patient in the centre but allowing for collaboration. A Hindu in Delhi said that it is “patient most of the time. Doctor and patient both, not family. Doctor can only advise, family support and implementation.” 824 They similarly see the patient as typically having control over decision-making, but makes it clear that although other players can be involved, their roles should be well-defined. Bobby the Sikh merchant in

Dharamsala has a similar perspective: “Doctor in India never takes decision, own person who takes decision. Has become a business, they hardly care if you take care of yourself or not, will guide you to eat this etc. eat meds…up to person look after yourself. Nobody cares, in fact.”825

Not only does Bobby place decision-making in the hands of the patient, he also criticizes the medical industry for being driven mainly by financial considerations, and because of this thinks that each person must take responsibility for their own health. Dr. Y.K. Dhondue, the Junior

Assistant to the personal traditional medical physician to His Holiness the Dalai Lama, had this to say:

Treatment decisions, decisions main[ly] to take or not, up to patient his/herself. We have open clinic, patient coming or not, consultation need or not, up to patient. For example clinic, many patient come to clinic: their decision! After consultation give medicine, describe different to allopathic, if have headache if take Tibetan medicine then gone. Tibetan medicine, different traditional medicine, herbal medicine takes time. Keep medicine fifteen days, one month. If coming long distance they take for two months, if local ten to fifteen days then come back. Tibetan medicine works slowly, takes time, not harmful for their parts. Allopathic quickly works, pain very good result, later stop then next day or year same problem comes because in Tibetan medical system text explain not treating symptoms but causes of disease. If tree, need to cut root, but takes time. Cut branch then this year okay but next year, there is root, trunk, next year same problem.

822 J-122614-H-022 823 D-010615-S-024 824 D-020515-H-027 825 DSL-041715-S-44

372

Tibetan medicine causes and conditions to uproot takes times, after long-term course again not coming problem.826

Dr. Dhondue makes the astute observation that healthcare decisions occur in a staged manner beginning with the decision to even come to the clinic, then whether to consult a doctor, and finally treatment decisions which he prioritizes. He also, again, frames his answer within the context of the differences between traditional medicine and biomedicine and how this might affect treatment decisions. Because traditional medicine takes time, courses of treatment last longer and how much medicine a patient might leave with is in part determined by their proximity to the clinic. Also, although he gives due consideration to biomedicine for its quick and short-lived benefits in reducing the symptoms of disease, he makes clear that the aim of traditional medicine is to eliminate the cause of disease and not merely the symptoms. Dr. Tseten

Dorji Sadutshang the personal physician to His Holiness the Dalai Lama, Delek Hospital CMO and Medical Advisor to the CTA, stated that the focal-point of healthcare decision-making is

pretty much the individual… Haven’t slipped into system in West where patients need to take more role in decision-making. Here one issue - patients place a great deal of trust in caregivers. “You will do best,” “know it all,” blind faith entrusted in you. Prevails here, rather than “this guy will give wrong treatment.” Feeling of distrust is there but minimal. Patient coming in who might want to see me rather than young doctors…only want [senior physician] and not junior resident. Common sense and common experience around world.827

Dr. Sadutshang might seem to be saying that increasing patient participation in healthcare decision-making is a step backwards by the use of the word “slipping” but by the context of his description of too much power vested in physicians being an “issue”, especially with respect to more experienced physicians, it seems likely that he sees some increased involvement of patients in their treatment plans as a more balanced approach. At the same time, it appears as if Dr.

826 DSL-041115-BND-43 827 DSL-040715-BMD-41

373

Sadutshang la simultaneously sees the trust placed in physicians as helpful for the therapeutic alliance.

To the contrary, three informants, or roughly four percent (4%) of the answers, mentioned that in their estimation patients are not prioritized as decision-makers. A Sikh in Delhi said that the “patient not much involved.”828 The foreign medical trainee at Delek hospital in

Dharamsala had this to say:

Patients do not much mind about not obtaining a sufficient amount of knowledge about their disease stages in order to make informed decisions. The consensus among the doctors, family and patient are that the best decisions are made, regardless of who made it. Personally, I cannot comment on whether or not that is true because though I have knowledge about certain alternative procedures that could have better results, I don’t know if they are available here.829

The lack of patients being giving all the necessary information to provide fully informed consent is tempered by resource constraints, which to this informant limits patient options in their decision-making.

A handful of informants, five to be exact, or six percent (6%) of the answers, mentioned that healthcare decision-making is done between the patient and their clinician. Jain philosopher

Mr. Surendra Bothara of Jaipur said that patients should engage in decision-making “with consultation, doctor also.”830 Mr. Manish Bhapdwaj of Jaipur gave a personal example to illustrate the role of physicians in helping patients come to decisions: “They diagnosed, discussed about improving. Went to five doctors for knee/sports injury: ‘pain after fifty years if no surgery,’ then decided to go for treatment.”831 Multiple doctors weighing-in on a prognosis of potential future pain if the complaint went untreated was enough for Manish ji to choose surgery.

Joint Secretary of the Department of Health for the Central Tibetan Administration, Mr. Thutop

828 ND-042815-S-49 829 DSL-040315-CMD(c)-38 830 J-112614-J-008 831 J-120914-HNA-014

374

Namgyal, stated very similarly that “doctor give point, ‘you need to be operated,’ up to us.”832

Thutop la further elaborated that “patient should, before taking any medicine or any surgery,…thoroughly verify whether has disease or not. Help of expertise, consult other doctors.

When he is confirmed ‘I have this disease and need to take these meds,’ only then should take.”833 This seems to be encouragement to get multiple medical opinions for confirmation of a diagnosis before accepting any treatment. Larvin Sharon of Cochin stated that

we need every support to make a decision. I collapsed, “dead” on bed…how can I make decision? Therefore need other people, doctor, some people, if unable. If able, don’t need anyone…just doctor and me. If family can help me financially then they can also be involved.”834

Sharon ji thinks that the more someone’s health status impacts their ability to engage in decision- making, the more help they need from others but that under normal circumstances the patient and doctor work together. Interestingly, she also included family among those who can participate in medical decision-making but only if they are helping with medical costs.

Only several informants, three which represented roughly four percent (4%) of the answers, such as a Jain doctoral candidate in Jaipur, thought that the patient makes healthcare decisions “with the family.”835 Mr. Dolma Kyap, a Tibetan bakery owner in Dharamsala stated that “family and self number one, then family.”836 A Sikh in Delhi said that “some decisions cannot decide by myself. Wife, mother, younger brother all together.”837

The nurse at Delek hospital in Dharamsala stated that “nowadays patient main, sometimes from our side, fifty-fifty.”838 They were the only informant, representing one percent

832 DSL-032715-B-36 833 DSL-032715-B-36 834 C-021615-CNA-30 835 J-112114-JPHDABD-006 836 DSL-040615-B-40 837 D-010615-S-024 838 DSL-042315-BRN-48

375

(1%) of the answers, to mention that healthcare decision-making is either done by the patient or

HCPs.

Fourteen informants, or seventeen percent (17%) of the answers, discussed HCPs as the main decision-makers. In the closed part of the interviews, the most number of respondents engaging in the questionnaire had extra things to say about this topic. Overall, this approach to healthcare decision-making was the third most popular after collaboration and context specificity. My first informant, Mr. Sunil Kumar who is a Hindu Delhi, stated that because people in general have “no knowledge” about medical treatment, it “should be doctors” doing the decision making.839 Sri Sushil Kumar Vaidya-ji, a Jain and Ayurvedic traditional physician within the Pink City of Jaipur, with the assistance of his brother holds that “doctor, not patient, diagnosis, takes decision about which medicine will give relief. No doctor can allow patient to decide regarding medicines.”840 Here is it important to note that the way informants answered these questions gives us a good indication as to the decision-making beats, if you will, that they are concerned with. Earlier, Dr. Dhondue pointed out that the first moment is the decision whether to even go somewhere to seek healthcare, and next whether to consult a clinician. The

Vaidya ji, also a traditional doctor, does not distinguish between decisions that end with a treatment proposal, such as certain medication regimes, and the decision that accepts or rejects that treatment proposal. The questions only broadly referred to healthcare (and in the next section, end-of-life) decisions, but could well have been more nuanced. On the other hand, the way the questions were presented allowed for the informants themselves to offer such nuances or not, as both are telling and bring us closer to understanding how they see decision-making in both healthcare and at the end of life. A Muslim, also in Jaipur, states that it is “absolutely

839 ND-110814-H-001 840 J-112614-JND-007

376 doctor”841 who makes healthcare decisions and another Jaipurian Mr. Prashant Pandey, a Hindu, agrees that “decisions made by doctors” but adds that “they are the last decision maker.”842 This reinforces one approach in which the last step in healthcare decision-making would be the clinician deciding to treat in a particular way, not the accepting of, or consenting to, the treatment by the person or their proxy. Mr. Bhawani Chauhan, a Hindu in Jaipur, stated that healthcare decision-making is done by the “doctor. Most people’s doctors make decisions for their health and medicines. Nowadays people gather information from books or internet, they follow those tips. Depends on what kind of diseases or problem they have. Definitely most people follow doctor’s advice.”843 Despite a high reliance on physicians, Bhawani ji observes that in contemporary India, people might at times look as their first recourse only to hardcopy on online text for guidance on addressing their health concerns, but exclusively for certain types of ailments. Mr. Hitendra Sharma, a Hindu in Jaipur, stated that healthcare decision-making is done

“by health care professionals. We don’t know about ailment and its management. Professionals should be given preference, his area of expertise.”844 Because of their training, knowledge, skills and experience with health conditions and treatments, and a lack in that regard from the side of clients, Hitendra ji feels that healthcare decision-making should be weighted towards HCPs. At another point in the interview, when talking about a particular health event while away at

841 J-120214-M-011 842 J-120414-H-012 843 J-121514-H-017 844 J-122414-H-020. At a gloss, the informant here seems to be collapsing all HCPs under a male pronoun, which we might think is a subtle linguistic hint of a predominance of males in healthcare roles, or a preference towards physicians over other healthcare roles since male doctors account for 83% of all biomedical physicians in India, 94% in rural areas (despite women accounting for 51% of 2014-2015 medical college admissions and there being 4500 more female medical graduates than males between 2011-2016) (Nagarajan 2016). However, if we look closely at how this phrase “his area of expertise” would be translated, the possessive pronoun for “his” and “their” are identical: उनके (unake). “Her” as a possessive pronoun, however, is different: उसके (usake). Another layer to this is that all Hindi nouns are gendered and possessive pronouns must agree with the gender of the possessed object rather than the subject, and “area” is a masculine noun. So, I would take from this that this gendered phrase is merely due to Hindi linguistic norms bleeding into the informant’s use of English, rather than indicating anything else.

377 college, he also said that although his “house-master (hostel warden)” was “taking care,” which I understand as meaning that in lieu of his family this person was acting as an attendant in getting him to the hospital and liaising with the healthcare team, it was the “doctor making decisions.”845

Mr. Thutop Namgyal, the Joint Secretary for the Central Tibetan Administration’s

Department of Health, said that “for me doctors are next to god, surely, so must trust and faith in doctors. Whatever they do, I am sure they will do for benefit for patient. Somehow we heard in news that doctors making money, I don’t know.”846 There are precedents behind the linking of physicians and holy figures of reverence and reliance. In the various Buddhist traditions, the healthcare context is sometimes used as an analogue to the religious. The Buddha is at times referred to as the physician, the Dharma or teachings as the medicine, and the Sangha or ordained community members as nurses who dispense the teachings. Additionally, and strengthening the analogy even further, in some northern schools such as Chinese and Japanese

Buddhism and the tantric Indian and Tibetan schools of Buddhism, Bhaishajyaguru or Medicine

Buddha is a member of the pantheon of enlightened beings.

In Tibetan Buddhism there are considered to be multiple Medicine Buddhas but the primary one is depicted in a form very similar to Shakyamuni Buddha with the three robes of a monk and seated in full-lotus posture but blue in colour. The left hand is in the hand-gesture

(mudra) of meditative equipoise and holding a bowl similar to a begging-bowl but performing the function of a gallipot as it is full of healing nectar, and most often has healing plants protruding from the top. The right hand rests on the right knee and between the thumb and first- finger is held the stem of a medicinal plant which then winds upwards vertically. Medicine

Buddha is used in practice for the practitioner to heal themselves, dedicated for the sake of

845 J-122414-H-020 846 DSL-032715-B-36

378 healing others or to increase the ability to heal others. It is also may be used in end-of-life ritual.

Some describe Medicine Buddha as the healing aspect of Shakyamuni Buddha, and healthcare providers are often thought of as emanations of Medicine Buddha.

Some renowned traditional physicians are even considered to be a manifestation of

Medicine Buddha, conceived of in a way that either has the enlightened being taking a human form or that the human has, through their own practice, become indistinguishable from the enlightened being in terms of their realizations. There have been many mentions in this study already about the deep trust and faith afforded to physicians in India, and this added layer of meaning for some Tibetans can lend strength to this deep reliance. Thutop la also presumes that all that physicians act in the clinical best interests of patients, and despite being countered by the existence of malpractice suits in India, such an attitude might lead a patient to not participate in healthcare decision-making. Lastly, Thutop mentions that he encountered in the media that physicians are monetizing on the practice of medicine and his being unsure about this. It seems that he might not just be referring to the mere fact that doctors make money, which is usually a given, but might mean that some doctors have money-making as their primary motivation rather than a concern for helping the sick. Thutop sounds unconvinced that there are such doctors.

The foreign medical trainee stated that “physicians exclusively”847 are the ones engaged in healthcare decision-making, and Library of Tibetan Works and Archives translator Mr.

Tsering Norbu discussed a particular incident and stated that the “doctor decided everything without consulting. Two hospitals, first in government then private, different doctors.”848 This alerts us to the fact that, in this informant’s experience, the one-sidedness of healthcare decision- making was not dependent on the hospital being public or private. When asked if physicians and

847 DSL-040315-CMD(c)-38 848 DSL-040415-B-39

379 healthcare teams are the main healthcare decision-makers, Dharamsala bakery-owner Mr. Dolma

Kyap answered “of course”849 as if to say that the question has only one obvious answer. When asked who makes such decisions, Delek Hospital physician Dr. Tenzin Desel stated “doctor”850 and in another part of the interview, said that with regard to decisions, “usually we make. Most patients believe whatever doctor says is right. Try to explain to patient why we give meds.”851 It is here that Tenzin gave low literacy and low health literacy, as well as a lack of time from heavy case-loads (mentioned in the preceding “process” section”), as complicating factors when working with those of advanced age. A Sikh in Dharamsala “What medicine: they who did everything. I just told my problem.”852 Despite also mentioning that healthcare decision-making is either by the team or patients, half the time for each, at another point in the interview the nurse at Delek Hospital said that with regard to patients, they “just inform them”853 indicating that patients are less involved in the decision-making as they mentioned otherwise. Lastly, a Sikh in

Delhi said that healthcare teams merely “advise us what to be done.”854

In chapter two - “Shall We Tell the Patient?” Blocking Bad News in End-of-life and

Health Information Sharing - the difference between “informed consent” in the U.S. and Canada and “real consent” in the U.K. and India was clarified by Indian High Court Judge, Kannan. In the North American context, the onus in placed on the clinician for ensuring that the patient has been given all of the information they would need to make an informed decision, whereas in the

U.K. and India the onus is on the patient (or, by extension, their proxy) for ensuring they have

849 DSL-040615-B-40 850 DSL-041815-BMD-45 851 DSL-041815-BMD-45 852 DSL-042015-S-46 853 DSL-042315-BRN-48 854 ND-042815-S-49

380 received sufficient information to make a fully informed decision.855 Real consent in the U.K. and India also operates in tandem both with the concept of “standard medical practice”856 and the exemption from disclosure standards in the sharing of treatment information based on a likelihood of harm.857 These three aspects of British-influenced health law in India - real consent, standard medical practice, and disclosure exemption - give clinicians a great deal of room to choose what to share and not share with patients and their families and SDMs. That healthcare decision-making is slanted towards clinicians is further supported by Canadian research on best interests in proxy decision-making in Canada and the U.K.:

In Ontario, best interests are determined via the consent process as outlined in the Health Care Consent Act (HCCA)… The physician first considers what treatment(s) are indicated according to the standard of care, determines if there are any relevant prior expressed wishes or values of the patient, and then proposes a plan of treatment to the SDM to seek consent or refusal. It is then the role of the SDM to consent or refuse the proposed treatments... This is different from, for example, in the UK, where physicians determine best interests and do not require a family's consent to act on this determination [8] [8. Mental Capacity Act, UK, 2005, c 9.].858

This tells us that in substitute decision-making in the U.K. and India, not only do family and/or

SDMs not determine best interests, but the consent of a family or SDM is not required once the clinician determines what is in the clinical best interests of the patient. The opinion of the twenty-eight percent of informants above that see healthcare decision-making in India being in the hands of HCPs is reinforced by legal opinion which gives most of the control over disclosure in information sharing to clinicians, and by the fact that in proxy decision-making clinicians can both determine and freely act on best interests without the involvement of SDMs.

On the other hand, a couple of informants, representing roughly two percent (2%) of the answers, were strongly against physicians being the main healthcare decision-makers. My initial

855 Kannan 2014: 174 856 Kannan 2014: 173 857 Kannan 2014: 172 858 Chidwick 2013: 23. Emphasis added.

381 informant, Mr. Sunil Kumar who is a Hindu in Delhi, said that although clinicians are usually the primary healthcare decision-maker, it “should not be allowed… Not commercial hospitals, recommending tests for money. Tata859 did not enter healthcare because doctors encourage treatment for money (Tata ethical company). Fly-by-night hospital need amenities to be used.”860

This informant is convinced that physicians are necessarily in a conflict of interest and particularly points out that private hospitals are financially-driven and thus would compromise any healthcare decision-making involvement by staff.861 When asked about the players in healthcare decision-making, a Sikh in Delhi stated that during decision-making “doctor didn’t sit together. Doctor should not know about this.”862 Although it seems that they might be saying that physicians should not be involved in healthcare decision-making, perhaps seeing it as a private family-matter, this same informant in another part of the interview did actually allow for “help from all sides”863 of the patient which either demonstrates inconsistency in the informant’s views on the topic, or that “all sides” excludes clinicians.

Six informants, seven percent (7%) of the answers given, thought that healthcare decision-making falls to family. This is the same number as thought that patients should be in charge of such decision-making. Among the four from Jaipur, Saleem ji the Muslim cook simply said “family,”864 Sharad ji the Hindu museum-owner mentioned “family members,”865 and Dr.

Kasliwal the Jain pediatrician mentioned “family” twice.866 Also in Jaipur, Manish ji the Hindu

859 “Founded by Jamsetji Tata in 1868, the Tata group is a global enterprise, headquartered in India, comprising over 100 independent operating companies.” http://www.tata.com/aboutus/sub_index/Leadership-with-trust 860 ND-110814-H-001 861 This, however, is an example of an informant who gave contradictory answers as mere questions before this he also stated that for healthcare decision making it “should be doctors” because non-HCPs have “no knowledge” about healthcare (ND-110814-H-001). 862 D-010615-S-024 863 Ibid. 864 J-111714-M-004 865 J-122614-H-022 866 J-121914-JMD-019

382 newspaper editor stated that “group of people, family, who are involved if someone in hospital…medical facility. Son/daughter/wife. Earning person, he can decide.”867 By the sounds of it, this informant feels that multiple people, such as children and spouses, can be involved in decision-making processes but that ultimately, it is the male breadwinner who has the final say.

The nurse from Dharamsala clarified that “we explain, decision-making from patient’s attendants, family side.”868 Dolma, the bakery owner in Dharamsala, was the only one who gave a reason behind having family take charge of healthcare decision-making stating that what “my wife or family members say, I listen to them. Too much headache, you sick and have to make decisions. Better to trust someone else.”869 From his perspective, the burdens of illness can make decision-making difficult and require relying on the family as proxy. Contrarily, one informant, a

Jain in Delhi representing one percent (1%) of the answers, made it clear that she felt that the

“family will not make decisions.”870

Surendra ji, the Jain philosopher in the Pink City of Jaipur, was another sole informant, representing one percent (1%) of the answers, with a unique suggestion that healthcare decision- making could be either done by the physician or a senior family representative: “Depends on relationship with doctor, also. Many families where family physician has final say because everyone in family has belief in him, he has last word. Otherwise, mostly the head of the family.” 871 I asked for clarification on “belief” in a physician:

In today’s world, rarer and rarer. Earlier, senior doctor almost part of the family. Modern days commercialized, find fewer like that. Medicinally, logically, doctor would know more about you than family! Because professional. My doctor in Jaipur is sick, cannot practice anymore. Some sort of leukemia. So dependent on him…every day I worry if I get sick who to go to. Another thing important - this breed of doctors getting extinct,

867 J-120914-HNA-014 868 DSL-042315-BRN-48 869 DSL-040615-B-40 870 D-020415-J-026 871 J-112614-J-008

383

maybe partly good partly not good. These days people depend more on specialist. General doctor became an agent of specialist, clinical aspect gone because everything depends on tests.872

Although an outlier, Surendra ji’s perspective is quite rich and fascinating. He speaks of the family physician of yesteryear who would know a person and their family throughout their life- course, in some cases perhaps even from birth all the way until death. This type of physician with full knowledge of the person and their health history has a familial closeness to their patient that is the basis for deep trusting relationships, but is also something which is becoming increasingly anomalous.

Eight informants, or roughly ten percent (10%) of the answers, felt that the family and physician make health decisions together on the patient’s behalf. Dr. Vinay Bothra, a Jain physician in Jaipur, stated that healthcare decision-making is done by “family, doctors” and mentioned “doctor-shopping, multiple opinions”873 suggesting that more than one physician might be involved. A Christian in Cochin and a Hindu in Jaipur, Mr. Gupta Dharmek, both similarly stated that it is the “family and doctor”874875 making decisions together whereas another

Jaipurian Hindu, our museum owner Sharad ji, has a more nuanced view thinking that “in general doctor…decisions made by family but advice by the doctor.”876 The decision is up to the family but only after consultation with the physician. Mrs. Jyoti Kasliwal, a Jain in Jaipur, was one of only two informants who spoke of healthcare decision-making that begins prior to treatment decisions: “Family and physician… In my family it is husband because an MD, knows most, best treatments, best place. Basically, first decision taken by the family - which doctor,

872 J-112614-J-008 873 J-111914-JMDNA-005 874 J-120114-H-010 875 C-021015-C-029 876 J-122614-H-022

384 where to go.”877 Although for her family it is unsurprising that her husband takes charge of healthcare decision-making due to his being a physician, but in general she sees the family and treating physician taking on treatment decisions. However, this informant speaks of the first healthcare decisions that are to be made, even before arriving anywhere for healthcare: which facility to seek treatment at, and which clinician to consult. Dr. Y.K. Dhondue, the Junior

Assistant to the personal traditional medical physician to His Holiness the Dalai Lama, similarly was thinking about healthcare decision-making starting before arrival to a facility with the decision to go somewhere or not and, then, whether to be seen by a doctor or not. Prof. Kamala

Jain, a Jain in Delhi, twice stated that healthcare decision-making is done by the doctor and family, but reversed the order in one mention.878 Mr. Dolma Kyap the bakery-owner in

Dharamsala, says that with regard to family and physicians making health decisions, “in terms of idea, no problem.”879 Lastly, Dr. (Ms) Reena R. Nelson Anthikat, a Christian physician in

Cochin, had some interesting things to say:

Made by group of doctors called “treating team,” family members of subject in case, also ministers in church have a say in euthanasia (life terminated voluntarily). A lot of religion that influences. For example, vegetable/coma Catholic church has inhibition to withdrawal even if supported…considered mercy killing…institutional human ethical committee.880 In general, she thinks that not only are healthcare decisions made by physicians and family members, but that a team of doctors are involved. Not only that, but for cases involving withdrawal of life-support, clergy might be involved as well as some form of ethics committee.

Her use of the terms “institutional human” should not lead us into confusion thinking that she is referring to a research ethics board (REB), sometimes referred to as an institutional review board

877 J-120414-J-013 878 D-020415-J-026 879 DSL-040615-B-40 880 C-022815-C-33

385

(IRB), which aim to protect study participants during research involving human subjects. Here it is fairly clear that she is referring, rather, to an ethics committee, which in places not having an ethicist on staff, can serve to review and advise on difficult cases in addition to other activities such as policy review. This was the sole informant, one percent (1%) of the answers given, to mention the inclusion of clergy in healthcare decision-making under specific circumstances.

Fourteen informants, or seventeen percent (17%) of the answers, discussed healthcare decision-making as a collaborative process between multiple players. This makes it the second most popular approach to healthcare decision-making among the study participants, after context specificity which will be discussed next. Some simply stated that among the possible players in healthcare decision-making it is done with a “combination,”881 a term given to them in my question, or “combination, normally”882 or just “all”883 types of possible participants such as the patient, family and HCPs. Some clarified what they meant when they chose collaboration as the manner in which healthcare decision-making is carried out. A Sikh in Dharamsala said

“combination – doctor, patient and family caretaker,”884 and a Sikh in Delhi at one point in the interview said “combination, patient and family first then family and doctor” and despite giving this order of involvement, stated at another point that “we all sit and discuss what to be done.”885

Mrs. Bharati Sharma, a museum owner in Jaipur, also ranked the order of decision-maker involvement as first being “family, then the doctors” but hedged slightly by saying that it is

“maybe a combination?”886 A Tibetan Buddhist physician in Dharamsala, Dr. Tenzin Lhundup, stated that healthcare decision making is by players in “combination mostly” but seems to give

881 J-120914-HNA-014 882 J-122514-J-021 883 DSL-042315-BRN-48 884 DSL-042015-S-46 885 ND-042815-S-49 886 J-123014-H-023

386 more weight to “doctor and patient’s relatives.”887 My first informant, Mr. Sunil Kumar who is a

Hindu in Delhi, is convinced that collaboration does not happen in practice but that it “should.

Happens in some families.”888 Dr. Shugan Jain, the Director of the International School for Jain

Studies in Delhi, says that for a relative of his who was a patient, “expect her to consult others: doctor, relatives in whom she has faith.”889 Shugan ji was not the only one to qualify that it is not just any family-member that the patient can rely upon. Dr. Vinay Bothra, a Jain physician in

Jaipur, stated that in healthcare decision-making there is a

hierarchy - doctor and reliable family/friends at top, patient in between. Ideally, more equal balance between patient-doctor relationship - empowered, seeking info, active participant in their care, things done with then rather than to them… Patient perspective? Combination…unfortunately weighted towards “doctor knows best.” Taking undue advantage, skewed balance.890

This informant had spent a great deal of time in the UK practicing medicine, and goes beyond suggesting merely that collaboration is an ideal configuration. He also includes trustworthy friends among the players in healthcare decision-making, and promotes a shift in power between physicians and their patients to encourage patients to be more involved in their care, and to have physicians who are less able to misuse the power that is typically over-vested in them. Mr.

Prashant Pandey, a Hindu in Jaipur, stated that there should be “doctor, and family combination, person also…I am a decision-maker.”891 Prof. Kamala Jain of Delhi stated that healthcare decision-making is based on the “opinions of the doctors, friends, relatives, suitable doctors.”892

A couple of informants, after choosing a combination of healthcare decision-makers, elaborated slightly on their answers for context. A Muslim in Cochin, calligrapher Mr. Thoufeek P. Zakriya,

887 DSL-040115-BMD-37 888 ND-110814-H-001 889 ND-111014-JPHD-002 890 J-111914-JMDNA-005 891 J-120414-H-012 892 D-020415-J-026

387 mentioned that “my father diabetic, knows must not take or take certain things. Mother helps him do this based on doctor recommendations.”893 Mr. Lobsang Rabsel, a Tibetan Buddhist and

Deputy Director of the social agency Lha in Dharamsala stated that “we don’t have healthcare until three years ago, CTA designed for health of Tibetan community, not making money.”894

Delek hospital is indeed a charitable organization, but it is not clear to me what he means by saying that healthcare has only been available to Tibetans in the area for the last three years since

I did a small study based on observations at the hospital and research into the history of the facility for a college-based palliative care course in 1998 while visiting to receive novice ordination. It might be that he is saying that funding for healthcare for Tibetans was not implemented until three years prior, but this also seems unlikely.

Lastly, eighteen informants, or roughly twenty-two percent (22%) of the answers, discussed healthcare decision-making as being dependent on the context. The ayurvedic doctor based in the Pink City of Jaipur, Sri Sushil Kumar Vaidya-ji, wth the help of his brother stated that “treatment decisions, system, depends on philosophy of medicine. Doctor, those that believe of Ayurveda, called “vaidya”, Unani “hakim”, allopathy known as doctors.”895 In addition to clarifying that healthcare decisions depend on the particular approach, be it traditional or biomedical, Vaidya-ji also gave the various names for the doctors belonging to the various systems including traditional medicine that, unlike Ayurveda, is not indigenous and which is called “Unani.” Several other informants also discussed this system. Dr. Vinay Bothra, the Jain physician in Jaipur who has spent much time in the UK, describes Unani as “similar to

Ayurveda, Persian.”896 When asked about traditional medicine, Mr. Abdul Rauf Mirza who is a

893 C-020915-M-028 894 DSL-032515-B-34 895 J-112614-JND-007 896 J-111914-JMDNA-005

388

Muslim in Jaipur, agreed with Vinay ji that “Ayurveda and Unani similar ” and added that “Islam take it, Unani: old name of Egypt etc. Oldest doctors, researchers. Luchman Hakim name of first person research Ayurveda and Unani…plant medicine.”897 When asked about the efficacy of traditional medicine, Abdul ji stated that “Unani/Ayurveda no side-effects.”898 Further, when asked about healthcare decision-making, he mentioned that “biomedicine works fast and people prefer that. Some diseases people prefer Ayurved/Unani.”899 So, in addition to the perceived speed of medicinal effects affecting patients’ treatment decisions, Abdul ji also associates Unani with Islam as my first informant, the Hindu in Delhi Mr. Sunil Kumar, does also by saying that it is practiced by “Islam doctors.”900 He adds Egypt to Vinay ji’s mention of Persia as being regions of influence, and holds that the plant-based medicines lack side-effects. Mr. Jyoti

Kothari, a Jain in Jaipur, had this to say:

Now more and more people, what happened in India - most of the people follow Ayurveda and some Unani, very similar to Ayurveda. Practitioners, Vaidya Unani called “hakim.” Most vaidya mix with Unani amalgamation. Then come homeopath, was very popular, everything prevailing. Finally came allopathy.901

Jyoti ji tracks the development of healing systems over time from the traditional to homeopathic and finally biomedicine. He also thinks that Indian traditional healing by way of ayurveda predominates among the population, and that despite Unani being used less so, it is nonetheless heavily incorporated into Ayurvedic formulations. Another fascinating mention of unani came from the Junior Assistant to the personal traditional medicine physician to His Holiness the Dalai

Lama, Dr. Y.K. Dhondue, who relayed something taught to him by his teacher:

897 J-121314-M-016 898 J-121314-M-016 899 J-121314-M-016 900 ND-110814-H-001 901 J-122514-J-021

389

Dr. Yeshe Dhonden mention to me, explain that Gyushi902 is main comes from India system, ancient Indian system. From start to end related to love, kindness, compassion, related to Buddhist practices and ethics. Special knowledge from Buddhist point of view. Now, cannot find doctor ethics chapter, Chinese, Unani…all these medical systems no such chapter.903

The Gyushi, or Four [Medical] Tantras, was elaborated upon in the introductory chapter, End-of- life Care Issues Among Select South Asian Religious Adherents Through Ethnography, Clinical

Ethics, and Legal/Textual Analyses. Dr. Dhondue mentions the Indian influence on the text but from his account it is not clear if the lost chapters, which included other traditional systems such as Unani, were the result of the initial rewriting or subsequent editing. The Indian influences on

Yuthok Yonten Gonpo-II, and the editing out of other traditional systems from the medical tantras, might explain why discussions of the text often include mention of Ayurveda but not

Unani.

There also are an impressive number of scholarly articles on Unani, such as this one from the Journal of Herbal Medicine which gives brief context before investigating the treatment of urinary stones by this traditional means:

Unani Medicine, an age old system of medicine which is widely practiced in south Asia, draws on the ancient traditional systems of medicine in China, Egypt, India, Iraq, Persia and Syria. It uses remedies of plant, animal and mineral origin which can treat a number of diseases successfully. These remedies, whose efficacy is evident mainly from observation, have been prized for centuries. Although some of the medicines have been examined to investigate their efficacy and possible mechanism of action, many have not yet been documented.904

It fails, however, to mention that “[t]he origins of Unani medicine are found in the doctrines of the ancient Greek physicians Hippocrates and Galen”905 who appeared in the fourth and third centuries BCE and first century CE respectively. Unani, then, has been influenced by many

902 Tibetan Wylie: rgyud bzhi. Four [Medical] Tantras. 903 DSL-041115-BND-43 904 Makbul 2017: 1 905 Encyclopædia Britannica https://www.britannica.com/topic/Unani-medicine

390 healing systems and is often mentioned by informants alongside the Indian system of Ayurveda as approaches that might be chosen by patients over biomedicine, despite being perceived as slower acting and based on their lack of side-effects.

Some informants stated that healthcare decision making is dependent on the type and severity of of illness. Mr. Vivek Sharma, a Hindu in Jaipur, said that it

depends on disease. Suppose cancer, want to know if at first or last stage. Decision made by me in my opinion. Suppose met with accident, parents take to hospital, at that time they would decide because not in my senses. Depends on person who is with you at time of accident, and on diseases.906

In addition to his concern with the type and severity of illness, Vivek ji adds that healthcare decision making is also determined by the patient’s ability to participate, and if unable, an appropriate person who is attending can make decisions by proxy. He seems to be saying that not anyone can be a substitute decision maker, and prioritizes close relatives such as parents.

Another informant was similarly attuned to a person’s ability or inability to make decisions. Prof.

Kamala Jain twice mentioned the “patient’s mental state”907 as a determining factor in healthcare decision making. It might be that someone is “not in helpless situation,” but if “cannot say if mentally alert, may not be able to take a decision. It is a rational exercise.”908 This informant speaks of mental capacity in quite a nuanced way since a reduced level of consciousness can negatively impact the ability to rationalize, which is a key component of both of the major aspects of decisional capacity. Understanding, or being able to understand the information needed to make a decision, and appreciation, or being able to appreciate the reasonably foreseeable consequences of a decision or lack of decision as applied to one’s specific circumstances, both require reasoning or rationalization acumen. She also seems to be saying

906 J-121014-H-015 907 D-020415-J-026 908 D-020415-J-026

391 that on the basis of decisional capacity, the person may or may not be dependent on others for decision-making.

Mr. Jyoti Kothari, a Jain in Jaipur, also thinks like Vivek ji that the severity of illness impacts healthcare decision making:

Depending on situation. If severe ailment, maybe doctor become very important. If common, then if I want to take medicine or not, not go to doctor, wife suggest some home medicine and I apply, sometimes do not…it’s mixed. In India general practice that people ask someone who are not doctor but considered knowledgeable about healthcare, normally consult them.909

Jyoti ji allows a person with a less serious illness more flexibility in how they approach decision making. He also uniquely adds that there is a common habit in India of checking in with those with expertise in healthcare, but who are not within the field, for collateral information to help guide their decision making processes.

For some informants, age was an important determining factor in healthcare decision making. Dr. Tseten Dorji Sadutshang, personal biomedical physician to His Holiness the Dalai

Lama, Delek Hospital CMO and CTA Medical Advisor stated that “depends on age group. If child – parents there.”910 The Head of Research and Translation at the LTWA, Dr. Chok Tenzin

Monlam Peltsok, said that healthcare decision making “depends on situation. If can make decisions themselves they should. For kids – don’t have power, parents.”911 First he mentions those who are able to make decisions for themselves, and then like Dr. Tseten considers children as dependent on their parents for healthcare decisions. Indian High Court Judge Kannan addresses the status of minors when discussing consent saying that

[m]inority of the patient takes away the legal competence to contract; for the same reason minors cannot bind themselves by consent to treatment. The father, who is the natural guardian of the child till the latter reaches the age of eighteen, is the competent person to

909 J-122514-J-021 910 DSL-040715-BMD-41 911 DSL-032615-BPHD-35

392

give consent. In the absence of the father, the mother is the lawful guardian. Absence of consent of the guardian will have the same consequences of the absence of consent of the patient. If the doctor undertakes treatment in such a situation he will be liable in damages for trespass to the person and may be guilty of a criminal assault [In re R (A minor) (Wardship: Consent to Treatment) [1992] Fam 11]. There is always this important assumption that the guardian will unfailingly ensure that the child receives proper treatment. Because the parents have rights and powers to perform their duties and responsibilities to the child in its best interests, ‘the common law has never treated such rights as sovereign or beyond review and control [Per Lord Scarman in Gillick’s case [1986] AC 112].’912

So, the age of consent for medical treatment in India is eighteen, unlike those jurisdictions which do not have an age of consent, such as Ontario which relies solely on the person’s capacity to consent. As well, this commentary makes it clear that the father is both prime guardian and default substitute decision maker for their children, which, by extension, means that if parents disagree over a treatment decision the father would have the final say. By this, informants stating that “parents” make healthcare decisions for their children is technically not accurate if they are not aligned in their thinking with regard to a particular healthcare decision. This model in which

“the father…is the competent person to give consent” also begs the question as to what happens if a father is lacking in mental capacity, or is incompetent, since Kannan only states that it is only

“[i]n the absence of the father” that the mother takes over guardianship and consenting duties.913

A couple of participants note a difference in healthcare decision making depending on what type of hospital people find themselves in. Mr. Tsering Norbu, a Tibetan translator in

Dharamsala at the LTWA, had this to say:

…different types: if hospital, standard government doctors must consult with patient and family, in private hospital doctor decides everything. Labour/delivery, then for more money, then force cesarean rather than natural. Same with my wife, pressure and followed. My wife in serious condition, serious pain, have to listen to doctors.914

912 Kannan 2014: 196 913 Kannan 2014: 196 914 DSL-040415-B-39

393

Intuitively, one might think that within the two-tiers of healthcare delivery in India, in a fee-for- service context the patient might have more autonomy, but Tsering gives the opposite as generally the case: that patients and family are engaged more by teams in public hospitals. He also fleshes out his opinion by offering the example of birthing in a private hospital where expectant mothers can be pushed away from natural birth at greater cost, and personalizes it by sharing that such pressure to cowtow to physicians happened to his own spouse. Contrarily, a

Tibetan physician, Dr. Tenzin Desel, stated that

in Indian setup, the doctor make the decision in government hospital. Load of patient is more, don’t have time to discuss everything. Now it is improving because of evidence- based medicine, patient autonomy, increasing involvement of patients in India. In private setup, patient decides more.915

Although being a physician himself, which presumably gives him more expertise with healthcare systems, and given that Dr. Tenzin shares some reasoning as to why he feels that patients are involved less in public hospitals (due to the busyness of physicians), it is not clear why these two

Tibetans have such polar opposite views. Although I am unaware of how long they each have been in Dharamsala, their respective demographic details might offer a hint as to the cause of this disparity as the translator was born inside Tibet, whereas the physician is from Ladakh in northern India.

One informant did not give specific contexts which affect healthcare decision-making, but merely suggested that decisions can be made differently. Mr. Abdul Rauf Mirza, a Muslim in

Jaipur, mentioned that “sometime doctor gave suggestion to use Ayurved. Sometimes people make own decision, sometimes family.”916 On the other hand, some participants gave rather unique contexts which they felt can determine how healthcare decision making plays out. My first informant, Mr. Sunil Kumar of Delhi, stated that whether or not a family acts as healthcare

915 DSL-041815-BMD-45 916 J-121314-M-016

394 decision makers “depends on family regarding intellect, more self-informed.

Consult…ultimately don’t know…some people in group, in families, are decision-makers.”917

Sunil ji appears to be saying that both the level of intelligence and the degree of exposure to medical information of family members determine whether they can act as decision makers, and should be engaged by healthcare teams to determine such things. Also, he seems to suggest that within their own ranks, there may be some family members who already operate as designated decision makers. Delek Hospital physician Dr. Tenzin Tsundue also speaks of family dynamics impacting decision making: “Depends who is dominant in the family. If father sick, if father decision maker at home, he will decide for themselves.”918 A couple of Tibetan informants stated that it is the ability of the patient to participate which is the main factor determining the players in healthcare decision making. Dr. Chok Tenzin Monlam Peltsok, the Head of Research and

Translation at the LTWA in Dharamsala, stated that “doctor and responsible person should talk about merits demerits, about patient hope or no hope, should discuss…parents represent” but with the caveat that “if patient can make decisions, should talk together.”919 Similarly, Mr.

Thutop Namgyal, Joint Secretary of the Department of Health for the CTA in Dharamsala, thinks that the family should make decisions with HCPs under the condition of the patient being “not able to say something.”920 Mr. Manish Bhapdwaj, a Hindu in Jaipur, was one of a few outliers among those who spoke of context dependence and stated that healthcare decision making should be “mutual” but specifying this with regard to a “pre-defined condition.”921 Perhaps the thought here is that if the condition is not well known or not yet diagnosed, this might slant the decision making more towards the clinical side rather than collaboration since diagnostic

917 ND-110814-H-001 918 DSL-040815-BMD-42 919 DSL-032615-BPHD-35 920 DSL-032715-B-36 921 J-120914-HNA-014

395 investigations might still be underway. Jain pediatrician Dr. Ashok Kasliwal in Jaipur felt that

HCPs should make healthcare decisions but felt more strongly that this should be the case for what he called “consultation,” presumably upon first contact during a specific complaint, and less strongly for “admission,” presumably referring to the process of someone becoming a patient in a health care facility.922 To conclude this section, Jain philosopher Mr. Surendra

Bothara of Jaipur gives these suggestions:

Certain points of time when better caretaking people decide among themselves, depending on personal likes and dislikes. For example, doctor wants to tell to stop taking salt and fond of salt, doctor says point blank, doctor talk to gradually introduce the idea. Simple example. A serious example would be many patients traumatically afraid of surgery, but surgery is needed. To convey to him big problem, such condition, people taking care and doctors should be consulted, not patient.923

Surendra ji offers the creative idea that clinicians should decide on things that patients might be averse to, such as changes to diet and certain treatments, by either slow exposure to the proposal or by excluding them from the decision making process entirely.

Informants were given only five possible configurations for the players involved in healthcare decision-making: (1) the patient; (2) the family; (3) the physician and healthcare team;

(4) the family with the physician and healthcare team; and (5) everyone. Despite this, their responses were impressively unconfined to the possible configurations that were suggested to them and with their ideas, the number of possibilities expanded to thirteen. From among these, the most popular answers were, respectively: context dependence determining the players in healthcare decision making; collaboration between multiple players and HCPs making the healthcare decisions (these two scored equally); followed by the family and physician making healthcare decisions.

922 J-121914-JMD-019 923 J-112614-J-008

396

(2) End-of-life Decision-making As with the first section, this section will be subdivided into the process and players in

EOL decision making, both categorized further under relevant sub-themes, and closing with some statistics. Unlike the previous topic of healthcare decision making, in the open interviews I did not ask a process-related question on EOL decision making which resulted in fewer informants speaking to that topic. However, during the questionnaires I asked informants about who makes EOL decisions. Thirty-nine of the fifty informants (n=39) spoke to the topics below and I have brought together answers from both the open and closed parts of the interviews.

Process

Only two informants spoke to the process of end-of-life (EOL) decision-making in their verbal answers, and with five themes. Dr. Tenzin Desel, a Tibetan physician at Dharamsala’s

Delek Hospital, stated that EOL decision-making can be “different” depending on the circumstances but that medical staff “usually try to discuss with family members first in doctor’s office. If no one with the patient, then try to tackle ourselves. I prefer to seek help with Dr.

Tseten to crack that.”924 So, physicians discuss EOL matters with the family first, and in a private location. Under the circumstances of there being no social support for the patient, Tenzin stated that medical staff do their best to approach such sensitive discussions directly with the patient, but shares his own tendency to engage the help on not only another HCP but the CMO of the hospital, Dr. Tseten Dorji Sadutshang. Dr. Sadutshang is the other informant who mentioned

EOL decision making processes, and, like Dr. Tenzin, also spoke of increased involvement by

HCPs when patients are alone. At the end of life, the team will

gauge by patient’s behavior, patient comfortable. By that time, should have developed a certain insight into their character. Knowing the patient well is emphasized, not numbers, the disease - the person. Doctors are, especially younger, are grounded into taking good

924 DSL-041815-BMD-45

397

person and family history to know entire background, not be textbook oriented or impersonal.925

Dr. Sadutshang emphasizes that getting to know patients as people is a prime directive in how they approach EOL care.

Players

As with healthcare decision making in general, I also asked informants who in general is involved in making end-of-life decisions between the patient, the family, the doctor and healthcare team or some combination. The participants said less verbally overall on this topic when compared to discussions on healthcare decision making, with a total number of forty-nine answers. In a subsequent section there will be another discussion on EOL decision making players but rather than general observations on who makes EOL, it will contain informants’ thoughts on their personal preferences for who they would like to be involved in the decision making with regard to their own EOL care in future.

Only two informants, or four percent (4%) of the answers, have the patient as the main decision maker at the end-of-life. Dr. Tenzin Tsundue, a Tibetan physician at Dharamasla’s

Delek hospital said that typically the “patient” makes decisions when they are “terminal.”926 Dr.

Chok Tenzin Monlam Peltsok, also Tibetan and the Head of Research and Translation at the

LTWA in Dharamsala, felt that “those dying know medicine helping or not, can feel it. Say “not going to take,” then relatives push to take not knowing reality of body of patient. Not responding, can make puke/vomit, patient knows not working.”927 Chok la not only placed end- of-life decision making with the patient, but shared the logic behind his view in that the patient is the most appropriate stakeholder to make decisions since they alone have the subjective

925 DSL-040715-BMD-41 926 DSL-040815-BMD-42 927 DSL-032615-BPHD-35

398 experience of what is happening with their own body and how it is being impacted by medical treatments. Even further, he suggests that family members might pressure a patient to continue treatments that the patient expressly refuses because they consider it ineffective. To this I would add the potential for a patient to refuse a treatment they consider overly burdensome, despite possibly being effective, such as chemotherapy which is essentially the introduction of toxic chemicals into one’s system. In some cases, the treatment can be worse than the disease-state itself. Chok la gives emesis as a sign to the patient that a treatment is not working, but such can also be a side-effect of effective treatment. Regardless of the reason for the refusal of a medical treatment, Indian High Court Judge Kannan clarifies the “right not to be treated”:

The right of self-determination, which underlies the doctrine of informed consent, also obviously encompasses the right to refuse medical treatment. A competent adult is generally entitled to reject a specific treatment or all treatment, or to select an alternate form of treatment, even if the decision may entail risks as serious as death and may appear mistaken in the eyes of the medical profession or of the community. Regardless of the doctor’s opinion, it is the patient who has the final say on whether to undergo the treatment. The doctrine of informed consent is plainly intended to ensure the freedom of individuals to make choices concerning their medical care. For this freedom to be meaningful, people must have the right to make choices that accord with their own values, regardless of how unwise or foolish those choices may appear to others.928

Interestingly, Kannan only offers several Canadian examples to demonstrate this right to treatment refusal, but none from India or even the UK. The type of patient Chok discussed, one who feels that a treatment is not working for them at the end-of-life, has the right to refuse it even if the clinician proposing the treatment and loved-ones disagree, and perhaps are even pushing them towards it. Kannan also affirms that a person also doesn’t need to have what might be considered by others to be a “good,” or even robust, reason for treatment refusal. They might simply not agree with biomedicine at all. Of course, such refusal is under the condition of the

928 Kannan 2014: 193

399 patient having the capacity to make such a decision that might deny even life-saving treatment.

But, theoretically, autonomy prevails.

Here I have grouped together five outliers, each representing two percent of the answers

(2%), who each had their own unique take on the players in EOL decision making. One informant offered a unique perspective specifically for a Jain monastic approach. Param Pujya

Gāninī Āryika Pratya Mati Mātā, a nun in Delhi, stated that at the end of life, what a monastic does is a “personal decision” but they must “first ask guru, guru gives permission.”929 It was clear that when Venerable Mātā ji discusses end of life concerns, her focus is on the fasting and immobilization practice of sallekhana, unlike other informants who answered within the frame of decision making relationships as they play out within hospitals. In fact, she clearly expressed that in the life trajectory of Jain Munis there are “no doctors.”930 For the final fast, Mātā ji explained that there can be “no encouragement, only when old. If body permitting possibility to be cured, then this is preferred. Sallekhana last resort. Spiritual soul only takes sallekhana, not everybody can take.”931 Mātā ji gives some of the normative standards to the practice932: there is to be voluntariness on the part of the candidate, who must get approval first from their religious teacher, and the criteria of both old age and incurable illness must also be met. Although the adherent must come to the decision to enter into sallekhana from their own side, they must collaborate with their guru to establish their readiness and the appropriateness of this end-of-life choice. This approach is extended to householders, who can also enter this practice but only after permission from their family and also with the guidance of Jain monastics. A Sikh in Delhi, feels

929 D-011015-J-025 930 D-011015-J-025 931 D-011015-J-025 932 Discussed at length in chapter three “Is it Suicide?” Ritualized and Medicalized End-of-life Practices: South Asian ritual practices of fasting and Immobilization at the End-of-life (Jain sallekhanā and Buddhist tukdam) and Medical Assistance in Dying (MAiD) Safeguards.

400 that EOL decisions are driven “by patient or by family.”933 Dr. Tenzin Desel, a Buddhist Tibetan physician at Delek Hospital in Dharamsala stated that EOL decision making is done by a

“combination” of players but stated that it is “usually patient, their decision.”934 Mrs. Bharati

Sharma, a Hindu museum owner in Jaipur, said that it is first the “family, then the doctors”935 who make end of life decisions. Mr. Surendra Bothara, our Jain philosopher in the Pink City of

Jaipur, stated that it is an “old tradition, doctor part of decision. Being a ‘family-member,’ knows all and can influence - ‘now he is beyond repair.’ Otherwise, senior family member, both in terms of position and acceptance. Sometimes a younger person can be considered all-knowing and depended upon.”936 Surendra ji was earlier quoted under the topic of the players in healthcare decision making in which he discussed how it used to be that family physicians in

India would know their patients throughout their life-course and become like kin because of their closeness with the families of those they treated over time, and the amount of health information they are privy to. Here too, Surendra ji thinks that historically the physician would deliver sensitive information such as someone being beyond treatment, and be a part of the overall EOL decision making. After the physician, a family designate would be the next in the hierarchy to make decisions. Surendra ji subtly clarifies that the determination of such a designate is not purely based on seniority but also the other family members recognizing the person as knowledgeable and reliable.

Five informants, or ten percent of the answers (10%), felt that the patient should be excluded from EOL decision making. A Muslim in Jaipur, Mr. Abdul Rauf Mirza, said that the reason others have to decide on a patient’s behalf is because the “person who is suffering, they

933 ND-042815-S-49 934 DSL-041815-BMD-45 935 J-123014-H-023 936 J-112614-J-008

401 are not well and don’t have ability to think.”937 A Sikh in Delhi felt strongly about not involving patients and sees the main decision making participants as “family and physician, not patient because if tell somebody going to die they will panic.938 If dying two to three months, ask attendants, then make a result ‘going to die by disease untreated.’ Never tell patient!”939 Buddhist

Tibetan Mr. Thutop Namgyal, the Joint Secretary of the CTA Department of Health, has similar but milder concerns and suggests that with “some patients, if has chances of cancer or terminal disease, then depending on patient, doctor or nurses should not say anything to patient because affects life of patient,”940 at which point during the interview he waved to his forehead as if indicating the mental upset of the patient. Unlike the Sikh informant, Thutop appears to leave some room to include the patient, but only on a case-by case basis. Dr. (Ms.) Reena R. Nelson

Anthikat, a physician in Cochin, first discussed the approach to post-mortem activities when asked about EOL decision making by stating that, in advance, corpse-disposition and funerary rites decisions are

made by treating team in compliance with members of the family who sign the declaration, or agreement, saying they would take body after death and cremate or bury according to custom. Patients are not involved because not healthy enough, is an impediment, stumbling block to making healthy, proactive, prolife decisions.941

Reena ji was an outlier in her adding of post-mortem discussions to EOL decision making. That others did not discuss this might be an indication that this topic more rarely enters into discussions with or about the dying person. Her exclusion of the dying patient from this topic is to keep them focused on living well during what time they have left, and due to the fact that they are somewhat compromised by their disease process. Lastly, Dr. Tenzin Lhundup, a Buddhist

937 J-121314-M-016 938 This and other reasons behind both non-disclosure and disclosure of sensitive medical information are dealt with extensively in chapter two “Shall We Tell the Patient?” Blocking Bad News in End-of-life and Health Information Sharing. 939 D-010615-S-024 940 DSL-032715-B-36 941 C-022815-C-33

402

Tibetan physician at Delek hospital in Dharamsala, observes that “mostly patient not aware of conditions so same” as healthcare decision making, EOL decision making is done by a

“combination mostly. Doctor and patients’ relatives.”942 Tenzin indicates that decision making at the end of life should fall to others in the circle of care because patients do not know about the nature of their illness.

Next we continue to look at EOL decision making players beyond the patient themselves with three informants, representing seven percent (6%) of the answers, who see it resting with the family. Both a Muslim and Hindu in Jaipur, cook Saleem Saleem and museum owner Mr.

Sharad Sharma, simply gave “family,”943944 whereas Dr. Shugan Jain, the Director of the ISJS, personalized his answer by saying EOL decision making would be done by his “wife in consultation with children.” 945 Mrs. Jyoti Kasliwal, a Jain in Jaipur, said that “in India natural…final decision is the family. Doctor would not take anything on themselves. Let’s say person on vent. Doctor will not take them off without asking family members.”946 Recently above we discussed the patient’s “right not to be treated”947 with commentary from legal scholar

Kannan which clarified that even if others consider a particular refusal of medical treatment to be unwise, the capable person maintains the right to refuse any treatment, even if life-saving. Here, instead, we consider substituted judgment by others on behalf of the patient. Advanced directives will be addressed in an upcoming sections on End-of-life Advance Care Planning, but it remains unclear from the informant if in the example she offers such a vented patient has capacity or not.

Regardless of capacity, removal of various life-supports in India is not as simple as Jyoti ji

942 DSL-040115-BMD-37 943 J-111714-M-004 944 J-122614-H-022 945 ND-111014-JPHD-002 946 J-120414-J-013 947 Kannan 2014: 193

403 makes it out to be as the process is much more rigorous than merely getting consent from family.

What is referred to as “passive euthanasia” in India was rendered permissible under strict conditions by guidelines developed by the Supreme Court in 2011 after, ironically, denying a request for the removal of artificial nutrition in the tragic case of Aruna Shanbaug. Shanbaug was a “nurse raped and rendered to PVS,”948 or permanent vegetative state, “by a sweeper in the hospital who wrapped a dog chain around her neck…[t]o immobilize her,”949 according to the judgment. The court found that because she had some ability to interact, could demonstrate her preferences to an extent and successfully take some things by mouth, that “it was not in the best interests of the patient to let her die.”950 According to a report in The Hindu, Shanbaug died in

September 2017 after spending forty-two years in this minimally conscious state and despite the denial by the court to allow her to undergo “passive euthanasia,”

[w]ithdrawing life support, treatment or nutrition that would allow a person to [die], was legalised by way of SC guidelines in 2011. Parents, spouse, close kin, “next friend” can decide, in best interests of the patient, to discontinue life support. The decision must be approved by a HC [High Court]. In dealing with such a plea, Chief Justice of High Court must create a Bench of at least 2 judges to reach a decision. Bench must nominate three reputed doctors. A copy of the doctors' panel report must be provided to close kin and State gov[ernmen]t. Only then can verdict be reached.951

So, such requests must necessarily go through the courts and involve an expert physician panel.

An article in the Times of India affirms that it has been “[m]ore than six years after sanctioning passive euthanasia as a legitimate option to end lives of people in a permanent vegetative state,”952 but further explains some of the logic behind implementing the laborious process required before withdrawal of life-support can be granted:

948 Kannan 2014: 76 949 Kannan 2014: 76 950 Kannan 2014: 77 951 Deshpande 2015 952 Mahapatra 2017

404

“There is constant advancement in medical science and who knows what a person thought today was incurable could be easily manageable in the distant future,”… additional solicitor general P S Narasimha…said. The court also said it needed to consider the possibility of coercion or fraud by greedy relatives. Official sources said the draft bill on passive euthanasia was in a nascent stage…953

The court and expert panel would, therefore, consider both the potential of the patient to have any improvement in their condition as well as the possibility of nefarious agendas on the part of family members. The same article also lumps discharge from hospital of patients by families against medical advice under the category of passive euthanasia, but one that is always permissible:

The sources also said that in an overwhelming majority of cases, when the doctors lost hope of saving a patient, the relatives took them home from hospital, thus signalling [sic] the administration of passive euthanasia. “There is no law that prevents a relative from taking discharge of a patient,” a source said.954

Our informant’s statement that physicians cannot make unilateral decisions to withdraw life- support and must involve family is technically accurate, but such a proposed trajectory for a patient actually involves quite a bit of both judicial and medical oversight.

Seven informants representing almost fourteen percent (14%) of the answers on EOL decision making participants suggested that physicians and families engage in this together. Prof.

Kamala Jain, a Jain in Delhi, simply stated “doctor and family”955 and a Christian in Cochin said

“family and maybe doctor some advice.”956 Several informants thought that patients might not be able to participate, for various reasons associated with approaching the end of life. Mr. Gupta

Dharmek, a Hindu in Japiur, said that “[d]octors and family talk about what is happening, what will happen. Patient don’t know because they are dying. Better to die happy.”957 Mr. Abdul Rauf

953 Mahapatra 2017 954 Mahapatra 2017 955 D-020415-J-026 956 C-021015-C-029 957 J-120114-H-010

405

Mirza, a Muslim in Jaipur, said that EOL decisions are ultimately made by “Allah!” but on the ground it is the “patient’s family and doctor” who “discuss about that person, what will be good.”958 Mr. Jyoti Kothari, a Jain in Jaipur, feels that EOL decision making is done by

“[c]onsultation between doctor and family. Sometimes include patient, because theoretical question. In reality, most of time patient dying is unconscious. Only in cases of severe cancer, conscious and can answer whether can bear the pain.”959 A Sikh in Delhi stated that it is “family and doctor”960 making EOL decisions and earlier was quoted with regard to excluding patients from end-of-life discussions, just like Dr. (Ms.) Reena R. Nelson Anthikat who placed EOL decision making process with the “treating team” and family.961

Eight informants, representing sixteen (16%) percent of the answers, placed EOL decision making with the physician. A Muslim in Jaipur simply said “doctor”962 and Mr.

Bhawani Chauhan, a Hindu in Jaipur, said “doctors only.”963 Mrs. Anu Bagal gave doctors as the first human agent to engage in EOL decision making, just after G-d.964 Mr. Sharad Sharma, the

Hindu museum owner in Jaipur said that when one is “dying,” decision making must “all depend on doctor thing.”965 Sri Sushil Kumar Vaidya-ji, the Ayurvedic physician in Jaipur’s Pink City, with the help of his brother told me that “if patient can take decision, then no need for doctors” but qualified this by saying that the “patient doesn’t know, treatment and remove problems.

Some say ‘no need for medicine, go for yoga, breathe like that, would be a miracle to remove problem.’ Depends on one’s belief. Belief important for any kind of treatment. Belief in

958 J-121314-M-016 959 J-122514-J-021 960 D-010615-S-024 961 C-022815-C-33 962 J-120214-M-011 963 J-121514-H-017 964 D-020515-H-027 965 J-122614-H-022

406 practitioner important too.”966 The first statement, that if a patient is able to make a decision there is no need for physicians, is perhaps read at a glance to mean that patients that are able can make their own EOL decisions. However, from the context of the interview I understand what was said as meaning that patients who do not have training and expertise of the kind that doctors do are actually unable to make treatment decisions. This is further supported by the additional explanation that belief in the clinician and the treatments they propose and administer are essential to bring about the intended outcome. Dr. Ashok Kasliwal, a Jain physician in Jaipur, twice said “doctor” and clarified by questioning “difference?”967 Presumably Ashok ji is asking of the distinction between decision makers and states that people “still want to know from doctor’s mouth to accept in totality. For family those decisions more difficult.”968 Mr. Gurvinder

Singh a.k.a Bobby, a Sikh shop-owner in Dharamsala, had this to say about who makes decisions at the end of life:

Purely the doctor and cannot question them. At that stage we cannot disagree with the doctor. For some, doctor is God in India, cannot question them. Not learned enough, no degree of that sort, doctor to take decision. In any case, if disagree the doctor will not resist: “we don’t want oxygen!” - they say “fine!” [laughs].969

As with the Vaidya ji above, Bobby ji thinks that only doctors have the appropriate expertise to navigate any EOL decision making. The informants also agree that doctors should be trusted absolutely, something which Bobby ji even connects to religious faith by likening the perception of doctors to that usually reserved for divinity. Bobby ji also shares that, in his view, doctors easily relent when people go against their recommendations. Lastly is a foreign medical trainee

966 J-112614-JND-007 967 J-121914-JMD-019 968 J-121914-JMD-019 969 DSL-041715-S-44

407 at Delek Hospital in Dharamsala who finds from their experience that EOL decision making is done by “doctors with some knowledge of the patients.”970

Thirteen informants, representing twenty-seven percent (27%) of the answers, think that

EOL decision making is done by a combination of players. Some merely answered without further clarification,971 but a couple of Buddhist Tibetans in Dharamsala gave more with one adding that it is a “combination generally”972 and another stating that the “combination depends on each family, each situation.”973 Some gave specific combinations of players in EOL decision making, but without offering their reasoning behind such configurations. One of two Hindus in

Jaipur said there is a “combination of doctor and head of family,”974 and the other gave the combination of “family, friends, doctor, me, both.”975 A Jain in Jaipur said it is “mostly doctor, family, friends consult and take decision”976 which seems to imply that although physicians have the greatest influence, those closer to the patient ultimately make EOL decisions after being advised. Two Buddhist Tibetan healthcare professionals shared their combinations with a nurse including everyone such as the “doctor, all medical team with family and all attendant and patient,”977 and a physician who not only said that it is by “combination mostly, doctor and patient’s relatives,” but added some reasoning that “mostly patient not aware of conditions.”978

Dr. Vinay Bothra, a Jain physician in Jaipur, thinks that those involved are

family, doctors, dependable friends. Could be religious leaders, too. Predominantly doctor followed by family, then patient. More collective, all of them together can make

970 DSL-040315-CMD(c)-38 971 J-120414-H-012, C-020915-M-028, DSL-040715-BMD-41, DSL-042015-S-46 972 DSL-040415-B-39 973 DSL-032515-B-34 974 J-120914-HNA-014 975 J-121014-H-015 976 J-122514-J-021 977 DSL-042315-BRN-48 978 DSL-040115-BMD-37

408

best decision. Maybe vulnerability of patient, too. Patient perspective? Give a lot of weight to doctor and family, not enough to themselves.979

Although vulnerable due to illness and the process of dying, Vinay ji still thinks that patients should have more stake in EOL decisions. Mr. Hitendra Sharma, a Hindu in Jaipur, stated that

EOL decision making is “not similar” to healthcare decisions making as “end of life different thing. If three of persons can come to conclusion, will be better. If unconscious, then family and doctors can sit and talk. People like you [bioethicist] with good ideas, positive things to help make decision.”980 Hitendra ji thinks that involving more people, including those in other healthcare roles, can help to get to the best EOL decisions especially if the patient is unable to participate.

Four informants, representing eight percent (8%) of the answers, think that EOL decision making is context dependent. Mr. Elias Josephia, my sole Indian Jewish informant,981 said that

EOL decision making will “depend on financial status. If I die, if I realize no recovery, I tell children no medicine. Spending time for that waste, burden. I don’t want, my view. If no

979 J-111914-JMDNA-005 980 J-122414-H-020 981 This appendix is mostly free from narratives that give context to my interviews since most informants have been introduced in the chapters. However, this might be my only chance to talk about Elias since he has not appeared elsewhere. We met in a town about a half-hour from Cochin, Ernakulum, in his place of business. Now housing an aquarium and rare fish store, the building is the site of the former Kadavumbagam Synagogue which is no longer in operation but is considered a site with historical significance. Elias continued to do business as we talked, which, combined with a slew of hungry mosquitoes, made things a bit difficult for me! In addition to answering open interview questions, Elias gave a reckoning of the local Jewish community and explained how some Jewish groups do not get along with some other groups but that anti-semitism is entirely absent in the area. Although my only Indian Jewish study participant, Elias was not the first Indian Jew I met on my research trip. I had met several in Cochin itself, near the only remaining operational synagogue in India, Paradesi. One was an elderly embroiderer named Sarah who is quite well-known in the area. Meeting Sarah was deeply moving for me, having been brought up in a Jewish family and later developing a very strong connection with India and its people. Until this point, the Jews of India were only an idea. While we chatted I got to hear about Sarah’s life in Kerala, and she even showed me a grainy black and white film of her in a Jewish wedding procession. Sarah is fluent in the local language of וּמַה נָּעִים שֶׁבֶת אָחִים גַּם יַחַד ,Malayalam, but also spoke some Hindi and English and we sang a Hebrew song together read right to left) or hine(y) ma tov u’ma-nayim shevet ach-im gam ya-chad which translates as “how) הִנֵּה מַה טוֹב good and pleasant it would be if people could live together in unity.” Meeting Sarah was an unexpected boon akin to meeting a long-lost grandmother and I will never forget her.

409 recovery I realize, I tell not to spend.”982 Clearly for Elias, EOL decisions hinge on the interplay between the prospects for recovery and managing resources. It is not clear if, under circumstances of futility, he is referring only to stopping treatments that are meant for curing illness, or if stopping treatment would also include pain and symptom control. Earlier we heard from Dr. (Ms.) Reena R. Nelson Anthikat, the physician in Cochin, who expressed her preference for the exclusion of patients from post-mortem discussions. However, with regard to treatment decisions she allows for patient participation in EOL decision making, but with some conditions: “Suffering from diabetes, have a part to play. Categorize in which disease systems patients involved in end-of-life decisions, which/where end-of-life are not determined by patient.983 Reena ji seems to think that patient participation in EOL decision making is dependent on particular disease states, with those that permit patient involvement being established by stakeholders other than the patient themselves. For Dr. Chok Tenzin Monlam Peltsok, a Buddhist

Tibetan who is Head of Research and Translation at the LTWA, EOL decision making is done by players in

combination. Realized beings, then, own attendants. Sometimes doctors not allowed - hindrance. They waiting for death, during process they know mind subtle. When freedom to control mind then can maximize the energy, bardo984 teachings, process of death even when have practice, dream yoga:985 all related with practice of utilizing subtle wind prana, chi,986 subtle mind. Common people usual family doctor.987

Chok distinguishes between the EOL decision making of realized and ordinary beings, with the former requiring less or no medical intervention and even categorizing the involvement of clinicians as a potential interference. He mentions a couple of religious practices that can assist

982 C[E]-022315-JW-32 983 C-022815-C-33 984 Tibetan for the “in-between” state after death and before rebirth. 985 This practice is a way of utilizing the dream state in lucidity to continue religious practices that would be done in the waking state. Also, since the dream state is seen as an analogue to the bardo, it is a way of preparing for death and transmigration. 986 Chinese term for vital energy. 987 DSL-032615-BPHD-35

410 religious practitioners with the dying and transmigratory processes, with the most refined aspect of the mind as their axis. Chok interestingly uses both the Sanskrit and Chinese words for the concept of vital energy. Dr. Tenzin Tsundue, a Buddhist Tibetan at Delek Hospital in

Dharamsala, gave various scenarios by saying that EOL decision making generally is done by the “patient” but that “family also involved if patient unable. If family unable, then healthcare team in certain cases. Best is collective, everyone included.”988 Lastly is Dr. Tseten Dorji

Sadutshang, the personal physician to His Holiness the Dalai Lama, CMO for Delek Hospital and Medical Advisor to the CTA, who gave some description of EOL decision making at their facility:

Often collective, unless individuals with no one. We try to talk to patient under those circumstances, play bigger role, especially if they say “you do what is best…” Decision making: suppose recently man left to die at home. This individual had a spiritual figure, Nyingmapa,989 married, children, two monks attending. Not in position to decide. Two monks and doctors, nurse. Condition so bad, semi-coma. Patient was such in state delusion, no matter what said might not understand. Discussed away from the patient. 990

Dr. Sadutshang gives collaboration as the norm, but then explains that for patients who are alone and for those who are unable to participate in decision making at the end of life, the healthcare team becomes more involved in EOL decision making. While discussing EOL decision making,

Dr. Sadutshang shared a touching story of a tragic event:

Patients here, from this culture, amazing. Many years ago, staff, family of three, children, when to Amritsar to see Golden Temple. Car hit truck…Tibetan taxi driver, met with accident in remote place. Husband, two children died soon after…eldest daughter didn’t even have a scratch, mother had a few bruises, badly shaken. Driver badly injured, husband was quad. When I reached, husband was quad on one bed, daughter on another bed, driver and wife transferred to another hospital, didn’t know where. Husband first thing, eight or nine p.m.: “you needn’t have taken this trouble to come here.” Not “where’s my wife or kid, what happen to me?” How can someone think of me? Tibetan

988 DSL-040815-BMD-42 989 Person belonging to the Nyingma (“ancient”) lineage of Tibetan Buddhism. “Nyingma” is referred to as such because the tradition traces back to the earliest texts that were translated from Sanskrit into Tibetan, and back to the earliest Indian masters that were invited to Tibet. 990 DSL-040715-BMD-41

411

husband, layman, more concerned about me [than] self or family. Don’t have to be a monk or enlightened being in cave to do that. People like that, so selfless.991

Although not specifically about decision making, I chose to include this narrative since for Dr.

Sadutshang it was important to demonstrate through an example that even under the most grave circumstances, there are those that are more concerned with the welfare of others than themselves. Perhaps Dr. Sadutshang chose to deliver this story within a discussion of EOL decision making because this principle of an overarching concern for others might well influence how certain people approach decision making, with an aim to reduce the burden on others.

Finally, two informants, representing four percent (4%) of the answers, specifically included divine involvement in EOL decisions with a Hindu in Delhi stating it is only “G-d” that is closely followed by the physician,992 and a Muslim in Jaipur who said that “Allah!” is the prime decision maker at the end of life.993

As with healthcare decision making, for EOL decision making informants were given only five possible configurations for the players involved in healthcare decision-making: (1) the patient; (2) the family; (3) the physician and healthcare team; (4) the family with the physician and healthcare team; and (5) everyone. Once again, responses were impressively unbound to the suggested configurations and with their perspectives, the number of possibilities expanded to thirteen. From among these, the most popular answers were, respectively: collaboration (or players in combination) in EOL decision making; physicians making EOL decisions; and family and physician making EOL decisions together.

991 DSL-040715-BMD-41 992 D-020515-H-027 993 J-121314-M-016

412

(3) Personalized Decision Making at the End of Life This next section will explore EOL decision making but in a more personalized way, with informants giving a glimpse into how they themselves would approach the end of their own life.

All informant quotes are from added verbal answers given during the questionnaire, despite being the closed part of the interview. Because the questions are quite sensitive in nature, I will not be using informant names. The sub-topics included here are on decision makers, end-of-life advance care planning, end-of-life social support, and end-of-life preferences for care.

Personal Preferences on End-of-life Decision Makers As mentioned earlier, although this section is also on EOL decision making players, it is distinct from the previous discussion since it has to do not with general observations informants have on the topic, but rather on their own wishes for who would be involved in decision making in their own future EOL care. The questionnaire data on personal preferences on EOL decision making players came from five questions giving specific EOL decision making configurations involving the patient, the family, HCPs, and collaboration between all three. One extra question was added starting with the eighteenth informant, on decision making with family rather than by the patient or family alone, and although not added to the statistical analysis since not all informants were asked the question, I have added the several verbal answers that accompanied the question.

When asked if they were dying would they want be the main person making decisions, seven informants gave extra commentary, the most extra responses from the five possibilities. A

Jain in Jaipur said that it

depends, maybe if realize not capable to make decisions prefer to consult. Something like partial mental condition. Sometimes not entirely capable, even in some simple conditions.

413

Sometimes lack of knowledge, not aware like doctor is aware. Fully dependent and confidence in doctor, “it is your decision” (say to doctor).994 This informant points to both mental capacity and lack of medical expertise as potential causes to rely on a physician for decision making support, or for them to entirely take over. Two others want to make their own EOL decisions but similarly see this as contingent on their ability to participate, such as a Hindu in Jaipur who said they would be the main decision maker “if conscious”995 and a Sikh in Dharamsala who said “if I can.”996 A Hindu in Jaipur also mentioned expertise saying that they “might allow others to take decision” as it “depends on being more expert than me, like daughter, sister, friends.”997 The remaining informants who weighed in on this question specifically mentioned family. A Jain in Jaipur said that their EOL decisions would have to be “in accord with the family,”998 and a Buddhist Tibetan HCP in Dharamsala concurs that “if family, have to ask family” but “if single, have to be” the main decision maker.999

Another Buddhist Tibetan in Dharamasla said that people “should have right to” make their own

EOL decisions but qualified this for “when loved ones around you, trust ones.”1000

When asked if they were dying, would they want to have their family making decisions on their behalf, two informants spoke up. A Jain for Jaipur said that for an “informed decision” it is the “person’s duty to make family aware of decisions so they are also involved.”1001 A Hindu in Jaipur would rely on family for their EOL decisions only “if unconscious.”1002

When some informants (but not all) were asked if they would want to make EOL decisions together with family, five had additional input. Whereas one Buddhist Tibetan in

994 J-112614-J-008 995 J-122414-H-020 996 DSL-042015-S-46 997 J-120914-HNA-014 998 J-120414-J-013 999 DSL-042315-BRN-48 1000 DSL-040615-B-40 1001 J-112614-J-008 1002 J-122414-H-020

414

Dharamsala thinks that it is “not important,”1003 another said “that’s a good idea!”1004 and a third said that it “depends on closeness. If close, will share. If not close, not share.”1005 The theme of the ability to participate appears again with a Jain in Delhi who said “as long as conscious, would like to be involved.”1006 A Sikh in Delhi was mainly concerned with pre-mortem estate planning and shared that he would “want to end my life take money from outside, hidden money.

Everybody in India has this in market. Want my family to know about all the money.”1007

Next informants were asked if they were dying, would they want their doctor and the healthcare team making decisions for them. Of the five that gave their thoughts, two mentioned medical expertise such as a Sikh in Delhi who said it is up to HCPs “because they give me treatment and know how to save the life,”1008 and a Hindu in Jaipur who said “I’m not a doctor, so they will do!”1009 A Hindu in Jaipur “at this time must believe in doctor.”1010 Two suggested that EOL decision making should not be done by HCPs, such as a Hindu in Delhi who wants it done “together” with the patient in the hope to keep physicians on point since “doctors from money point of view,”1011 and a Buddhist Tibetan in Dharamsala who feels “family should” be responsible for making decisions.1012

When asked if they would want their family making decisions with their doctor and the healthcare team if they were dying, four informants had more to say. A Buddhist Tibetan in

Dharamsala is keen on this configuration saying that they “think it is good, should talk.”1013

1003 DSL-040615-B-40 1004 DSL-032515-B-34 1005 DSL-032615-BPHD-35 1006 D-020415-J-026 1007 D-010615-S-024 1008 D-010615-S-024 1009 J-122614-H-022 1010 J-120914-HNA-014 1011 ND-110814-H-001 1012 DSL-040615-B-40 1013 DSL-040615-B-40

415

Conversely, a Jain in Jaipur relies entirely on the physician, saying that they are a “different kind of person in that matter. If go to doctor have full faith, person treating me - go to them with full faith. Whatever they do will be for my good. Will not interfere in his decisions.”1014 Two Hindus in Jaipur gave their input with one saying that EOL decision making should be done by “family, or person more expert, and doctor with my consent,”1015 while the other only allows for this model “if unconscious.”1016

Lastly, when asked if they would want themself and their family making decisions along with their doctor and healthcare team all together in a collaborative way, five informants had thoughts to share. Three were in favour, such as a Jain in Jaipur who said this is “ideal,”1017 and two Buddhist Tibetans in Dharamsala who said it is a “good idea”1018 and “if possible it is good!”1019 Two more Buddhist Tibetans in Dharamsala were less enthusiastic with one saying such a collaboration is “not necessary,”1020 and another clarifying that as HCPs, “we not making decision.”1021

End-of-life Advance Care Planning This section will again be based on additional thoughts given by informants during the questionnaire. Despite it being the closed part of the interviews, forty-five (45) informants offered more details. I asked about the existence, usage and mere knowledge of documented advance care planning, such as with living wills or power of attorney for personal care (POAPC) paperwork. Living wills contain directions to substitute decision makers to guide them on medical matters if the patient is unable to speak for themselves, and POAPC documents

1014 J-120414-J-013 1015 J-120914-HNA-014 1016 J-122414-H-020 1017 J-112614-J-008 1018 DSL-032615-BPHD-35 1019 DSL-040415-B-39 1020 DSL-040615-B-40 1021 DSL-042315-BRN-48

416 sometimes include such directions but not always. A POAPC document might simply establish who the person has appointed as Attorney(s) for Personal Care (APC). I asked about two types of documents: those that give directions, and those that name SDMs. Often in Ontario, when included, directions contained within POAPC documents are boilerplate which at times can be a flag that the person might not have participated much in the development of the document beyond signing. Documents that have unique language can be taken as a sign of the opposite, that the person was so vested in the document and its purpose that they helped compose unique directions for their SDMs. Another aspect is that advance directives may or may not be applicable to the particular circumstances of the individual and the medical decisions at hand. In my experience in clinical settings, teams often need to be encouraged to ask families to bring in such documentation. When they are produced, both the date of enactment and the type of language used within are scrutinized to determine how helpful its contents can be. Older documents and those with standard wording are typically given less weight and are easily contradicted by SDMs on either count, that it is too distant to represent current wishes or that the person did not know everything contained within the document they were signing. An added complication in practice is that, despite POAPC documents being well recognized, some institutions will not accept other types of advance directive documents and require one of their own to be filled out. This is good practice in general because it both requires healthcare teams to broach these sensitive EOL discussions, something that is not easy to do and often avoided by clinicians, and also keeps wishes current. However, it can happen under emergency circumstances that the person is unable to communicate and SDMs cannot be reached and a document exists, in whatever form, which clearly indicates the person’s wish to withhold certain treatments. This is a very tricky area and a perennial problem in healthcare. Ontario’s main piece

417 of legislation addressing medical treatment, the Health Care Consent Act (HCCA), distinguishes between capable and incapable people in its guidance around emergency treatment without consent. Interestingly, for incapable people the Act allows for emergency life-saving treatment without consent on the basis only of there being an emergency and that any delay, including reaching SDMs for consent or refusal, gravely risks life or limb.1022 However, for the capable person, instead of there being two requirements for emergency treatment without consent there are five including communication barriers and this: “there is no reason to believe that the person does not want the treatment.”1023 Because this is not a requirement for incapable people, in theory a person could have a document on their person indicating they do not want to be resuscitated and, legally, it would hold no weight. Legislators must have had a reason for this difference, but it seems that it would be just as fraught to deal with something indicating a person would refuse a certain treatment for the incapable person as with the capable person with communication barriers. For example, in a recent case in Florida a man was brought into an emergency room unconscious and staff noticed a tattoo on his chest which read “do not resuscitate.”1024 A different jurisdiction, to be sure, but in Ontario this would be an incapable person giving a “reason to believe that the person does not want the treatment”1025 but with no legal backing to consider it. At first the treating team decided they would give life-saving treatment because the context of the tattoo was unclear,1026 erring on the side of life. It might not be a current wish, the circumstances of the tattoo are unknown (and we can think of the common view that many people get tattoos as gags or under the influence), and there is no collateral information to support the presumed wish. Ultimately their ethics consultant advised oppositely,

1022 HCCA 1996, c. 2, Sched. A, s. 25 (2). 1023 HCCA 1996, c. 2, Sched. A, s. 25 (3). 1024 Willingham 2017 1025 HCCA 1996, c. 2, Sched. A, s. 25 (3). 1026 Willingham 2017

418 that the presumed wish against such heroics should be followed.1027 Happily, the team was able to locate a document affirming the DNR wish, which set the team at ease.1028 It is hard to say how I would approach such a case in Ontario because of the way the Act is written, but my view is that the “reason to believe that the person does not want the treatment”1029 should be included under the requirements for emergency treatment without consent for incapable people as well, and in my clinical practice I approach such cases in that way.

Further, advance directives do not legally need to be followed by SDMs in Ontario, for better and for worse. I can safely say that one of the main tipping points that led me into the field of bioethics came from seeing families inappropriately overturning advance directives. An example would be a person who both verbally and in writing made it clear that under no circumstances should they be intubated and ventilated (a breathing tube connected to a breathing machine), and in a crisis the family tell the team to do so for no other reason other than not being ready to lose their loved one. It is helpful that advance directives do not need to be followed when there are good reasons, such as a more recent conversation with the person indicating something different than their previously documented or verbal wishes.

Needless to say, I am very interested in the topic of advance directives and was quite enthusiastic to hear from informants on not only the existence, usage and mere knowledge of such documentation, but also on how verbal advance care planning is approached, if at all, by adherents in India.

Non-HCP informants who engaged with the questionnaire were asked if they have a written document that states the kind of medical care they would want if they could not speak for

1027 Willingham 2017 1028 Willingham 2017 1029 HCCA 1996, c. 2, Sched. A, s. 25 (3).

419 themself,1030 and HCPs were asked if they utilize such documents with their patients/clients. A

Hindu in Delhi said that such documents are “not in India.”1031 Several informants shared how they think decisions are made for patients who cannot participate and without having guidance from advance directives. Two Jains gave similar answers, with one from Delhi saying that

“family members give details”1032 and one in Jaipur saying that the “patient relative”1033 advocates on their behalf. One Buddhist Tibetan in Dharamsala said they would “trust wife or any family member, respect their judgment. Even if make mistake, I am okay, really.”1034 A second would instead “trust the doctors.”1035 Two Jaipurians offered their thoughts with a Jain physician saying that “consent for operation” should be based on “best interest”1036 whereas a

Hindu said that “hospitals well equipped, should be prompt to care of patient, start immediate medication/ventilator, any kind of life-support.”1037 At a glance, both of these informants seem to be giving the most weight to what is clinically indicated for a person needing healthcare, rather than the patients wishes or, in their absence, other things which could give a sense of what a person may or may not want such as their values and beliefs. But this depends on what is meant by “best interests.” Indian High Court Judge and legal scholar Kannan does not offer a definition of best interests, even though he uses the term frequently. Strangely, the term is not even in the index of his book on “Medicine and Law,” which is odd. He does say that “[t]he ‘best interests’ test allows doctors to take into account all relevant circumstances”1038 but it is not clear if he means anything beyond the clinical. An article in the India Health Report discusses “the

1030 This language was meant to be accessible to informants but will henceforth be referred to in this study as “advance directives.” 1031 ND-110814-H-001 1032 ND-111114-JMD-003 1033 J-121914-JMD-019 1034 DSL-040615-B-40 1035 DSL-032715-B-36 1036 J-111914-JMDNA-005 1037 J-121514-H-017 1038 Kannan 2014: 59-60

420 principle of always acting in the best interest of the patient” and states that “[a]ccording to the application of this principle in its strictest sense, patients should always get the best available medical attention.”1039 Although this is squarely based on clinical considerations, if we look to the UK for guidance, as the most influential jurisdiction on Indian medical jurisprudence, the

General Medical Council writes that “[a]ssessing best interests will include...cultural, religious or other beliefs and values.”1040 Although including non-clinical considerations under best interests, it is unclear if this has been influential in India. More research is needed on this topic. One scholar gives an American perspective:

When...wishes of the patient...are unknown or when there is disagreement among family, friends, or other surrogates, healthcare professionals are likely to adopt what is known in law as the “best interest” standard, which is a vague standard concerning what a reasonable person would want in a similar situation.1041 This definition implicitly includes patient preferences. Ontario’s HCCA, like the UK General

Medical Council, explicitly includes values and beliefs in addition to clinical considerations such as whether a treatment will improve someone’s well-being, slow their deterioration and so on. It also includes a third component, incapable wishes which do not need to be followed but need to be taken into consideration by SDMs. An example would be a person incapable of treatment decisions refusing to give their arm for the insertion of an IV needed for a procedure. Although often ignored both in scholarship and clinical practice, I find the inclusion of incapable wishes under best interests standards to be an important and subtle means of trying to get at patient wishes. I regularly emphasize it in my consulting and teaching. Despite indications of the inclusion of non-clinical considerations in best interest standards in North America and the UK, it is not clear if “best interests” in India means anything beyond clinical best interests. It may

1039 Kale/Bhandari 2010: 75 1040 General Medical Council (UK) 2013: 4 1041 Hood 2006: 30-31

421 well be that our two Jaipurians above are saying that for the incapable person without known prior capable and applicable wishes, clinical considerations should prevail. Even if there are advance directives, Kannan holds that if the prior wishes are not perfectly applicable, then clinicians trump SDMs and take over decision making based on clinical best interests:

When a patient who has made an advance directive becomes incompetent, and has not foreseen the unbearable pain their illness will bring, then it is for the doctor to decide what is in his best interests. He shall have no right to cede the decision-making power to even a relative in such a circumstance.1042 When asked if they have ever heard of a document that provides advance directives, a Jain in

Jaipur called it a “living will”1043 and a Hindu in Jaipur referred to it as a “power of attorney for personal care.”1044 Two informants, Hindu and Buddhist, associated it with “insurance,”1045 and a

Hindu in Jaipur had this recollection: “when in US in 2009 I hospitalized for check-up in ER and signed paper for risk… Don’t know what form said…medical policy was there.”1046 A Muslim in

Cochin associated advance directives with medical and public health advice: “do’s and don’ts?

Recommendations by doctor, people more listening to advice lately, government documentaries to increase awareness, about food, using proper toilet.”1047 From this we can see that from among those who gave extra thoughts on the topic, although a couple have a grasp on the concept the others have tangential associations with it. Three Buddhist Tibetans in Dharamsala confirmed they had heard of such a document but in different contexts, such as in “USA”1048 or “in big corporate hospitals”1049 and “private settings, I guess.”1050 A fourth Buddhist Tibetan, a HCP, elaborated: “if they don’t want to keep patient like this they say verbally by family. Some want

1042 Kannan 2014: 63 1043 D-020415-J-026 1044 J-121814-H-018 1045 J-121814-H-018, DSL-032615-BPHD-35 1046 J-122614-H-022 1047 C-020915-M-028 1048 DSL-032615-BPHD-35 1049 DSL-040815-BMD-42 1050 DSL-041815-BMD-45

422 to take to die at home, might be calmer at home, like family type. Some want to be here, want more secure, feel more secure, if have pain get all the need things, depend on people.”1051

Similarly, a Jain in Delhi also said that EOL preferences, such as wanting to die at home, are communicated verbally to healthcare teams, rather than by documentation: “if I fall sick, if sickness of level incurable/difficult to cure, want to prepare to go, at home. Verbal communication.”1052

Next informants were asked if they have a written document naming a person to make medical decisions for them if they are unable to make decisions for themselves, which is the main function of the POAPC (but not the only function since it can also include wishes). A

POAPC is a durable power of attorney, “durable” because it remains intact after capacity is lost.

HCPs were asked if they encounter such a document with their patients/clients. A Jain physician in Jaipur said that they exist “in UK”1053 but a Buddhist Tibetan physician in Dharamsala said that such a document is “not in India.”1054 Most in response to this question shared their own representatives, called a “nominee”1055 by a Muslim in Jaipur, and how they came to designate them, or generally shared who would typically be representatives for people. A Jain in Delhi said his designate is his “brother’s son, tentatively written will and told him. Not registered, but there.

Hopefully taken care of.”1056 Two others gave similar answers, with a Hindu in Delhi designating his “brother” who “can speak about anything,”1057 and a Christian in Cochin also designated their

“brother” by “verbal agreement.”1058 In general terms, A Hindu in Jaipur said that in a “joint-

1051 DSL-042315-BRN-48 1052 ND-111014-JPHD-002 1053 J-111914-JMDNA-005 1054 DSL-040715-BMD-41 1055 J-120214-M-011 1056 D-020415-J-026 1057 D-020515-H-027 1058 C-021615-CNA-30

423 family, the elders take decision, mother or father”1059 but a Jain physician in Jaipur said that naturally it is the “head of family, male, elder, or anyone who family puts forth” on the basis of

“language, money.”1060 Family seniority is common in these answers, and the gendered answer allows for someone to be appointed on other grounds such as communication skill or having resources. Another Jain physician in Jaipur said that the “informant usually parent or relation or neighbour”1061 and thus also allows for non-family to be an SDM. Lastly, a Buddhist Tibetan in

Dharamsala gave a unique answer saying that for the end of life there are “messages to friends or relatives, close relatives, kachem (last words): money, relationships, family planning, serious issues. Some people do when not dying.”1062 This sounds more like a last unrelated to EOL healthcare decisions, but noteworthy that for some Tibetans various types of post-mortem planning are done in advance.

The final advance care planning question asked was whether informants had ever heard of the existence of documents that name SDMs in advance of people being unable to speak for themselves. A sole informant gave the name of their own representative, who happened to be their Guru.1063 Many affirmed that they had, such as two Buddhist Tibetans in Dharamsala. One had heard about such a document “in health BBC,”1064 and a physician said “in India, yes.”1065 A

Christian in Cochin said they had “heard of it…studying for medical transcript…but rare.”1066

Several who were aware of such a document qualified their answers such as three Hindus. Two in Jaipur said, respectively, “yes, but do not use”1067 and “yes, in movies not in practical life”1068

1059 J-120114-H-010 1060 J-111914-JMDNA-005 1061 J-121914-JMD-019 1062 DSL-032515-B-34 1063 D-011015-J-025 1064 DSL-032715-B-36 1065 DSL-041815-BMD-45 1066 C-021615-CNA-30 1067 J-120114-H-010

424 and one in Delhi said “yes, but don’t believe. Self-sufficient person, I take decision.”1069 It is unclear if this informant misundertstood the nature of the document being one that is activated when the person becomes incapable and unable to make decisions, or if they simply would not choose to appoint someone as an SDM for themselves in anticipation of their own possible incapacity. A Jain doctoral candidate in Jaipur stated that in such a document “people say how to be treated, or tell to relatives, regarding life-saving.”1070 The informant’s conflation of the SDM appointment document being discussed with one that gives directions is perhaps unsurprising since some documents can perform both functions. A Jain in Delhi knows of such a document but only in “function, not name. Informally think of those things

(communication/understanding), not own family as such.”1071 This informant seems to keep thoughts on the end of their life to themselves. A Buddhist Tibetan physician has heard of SDM appointment documents “in big corporate hospitals.”1072 A Jain in Jaipur said such a document is

“not popular in India” and “might not exist.”1073 Three associated such a document with estate planning and the last will and testament, such as a Jain in Delhi who sees such documents “like a will, for wealth” where one “assigns” a representative.1074 A Hindu in Jaipur said they “have heard of will for estate”1075 and a Buddhist Tibetan in Dharamsala said that there are usually

“two nominees for wealth distribution in Indian system.”1076 The term “nominee” was mentioned by several informants at different sites, such as a Sikh in Delhi who understood an SDM

1068 J-120914-HNA-014 1069 D-020515-H-027 1070 J-112114-JPHDABD-006 1071 D-020415-J-026 1072 DSL-040815-BMD-42 1073 J-120414-J-013 1074 ND-111014-JPHD-002 1075 J-120414-H-012 1076 DSL-032615-BPHD-35

425 appointment to be “like nominee,”1077 and might indicate a common usage in India. A couple referred to SDMs, like one Hindu in Jaipur, as “proxy.”1078 A Muslim in Cochin also used the term but in a different context where there can be a “proxy if person away,” and they can “appear in court” on someone’s behalf. 1079

Three informants brought up family, all from Jaipur. A Hindu said that such documents are “discussed in media, in medical/ethical fraternity. Some say no one can make decisions for someone else, others say if person not in condition to make decision, person directly related can make any decision.”1080 Two Jains mentioned the joint-family: “family members have full authority to make decisions. In joint-family not alone, eldest. Wise decision.”1081 Another said that “for health care” such a document is

not common partly because joint-family system. Even though nuclear families increasing, mind-set continues. Joint-family, even if able to communicate, certain decisions family takes, burden not on self. Whoever is responsible. For example, cold/simple fever, avoid going to doctor. Wife/younger brother insist on going or call themselves. Untold rule/system. In most joint-families, depending on members, responsibilities divided. Natural division depending on expertise or interests. For example, brother or brother-wife very good at purchasing, knows about textiles. Naturally responsibility of family shifts to them. For example, I am not a good purchaser, not good bargainer, elder brother expert in these, tell if need a shirt. For example, health of family, I know more than anyone else so I take decisions.1082

Again we see some differences in how informants explain how joint-families designate responsibilities, with one pointing to seniority and another to dispositions and expertise. Earlier, two informants also added gender as an influential factor.

It is noteworthy that during the writing of this apendix, and although years ago still in the wake of the precedent-setting Supreme Court guidelines for withdrawal of life-support, the

1077 ND-042815-S-49 1078 J-121814-H-018 1079 C-020915-M-028 1080 J-122414-H-020 1081 J-112714-J-009 1082 J-112614-J-008

426

Supreme Court will soon explore the potential for advance directives. This makes some of legal scholar Kannan’s words somewhat predictive. Because

[t]he IPC [Indian Penal Code] criminalizes any attempt to suicide and, consequently, it equates assistance to termination of human life in both forms…active and passive [euthanasia]…as abetment to suicide…court approaches have generally been very cautious, and have not attempted to strike any new paths. They have held on to popular belief of the sanctity of life. Concepts of patient autonomy and primacy of advance directives are gaining ground…1083

The Times of India reported on this current shift.1084

End-of-life Social Support

Informants who participated in the questionnaire were asked seven questions to explore who they think would be taking care of them at the end of their life. Few informants elaborated on their own EOL social support networks, only eleven (11). We might presume that this is due to the sensitive subject matter, since on the topic of ACP documents, which implicates people less personally, forty-five (45) informants chose to weigh in. However, thirty-six (36) informants spoke up on EOL care preferences as you will see below. If we compare questions having to do with who would care for them when dying to those on what they would want for their care if they were dying, the latter to me seems more deeply personal as it includes treatment options.

Perhaps, instead, people were quite clear on who would care for them at the end of life and thus had less to add verbally after giving their Likert scores.

1083 Kannan 2014: 564, emphasis added. Kannan mentions the criminalization of suicide attempts but in 2017 this was reversed in the Mental Healthcare Bill: “An important factor in the Bill is that it separates attempt to suicide from the Indian Penal Code. In effect, IPC provisions cannot be invoked in case of an attempt to suicide. Since the person undertakes the step in extreme mental stress - meaning it is triggered by mental illness - the Bill does not criminalise it (Kaul 2017).” Despite this, perhaps the IPC approach to abetment to suicide remains unchanged, at least in contexts other than passive euthanasia (done in accordance with the legislation) since it was legalized in 2011. It is strange, then, that Kannan here does not mention the legalization of passive euthanasia since it occurred years prior to publishing his book in 2014. 1084 Mahaparta 2017. See inset box #10 for full article.

427

For the options of children or a spouse taking care of them at the end of life, informants had nothing extra to say. For the option of other family members taking care of them, two informants added details. A Jain in Jaipur said that there are highly structured family relations in

India.

Nearest relatives: nephews and nieces in my family. First responsibility, spouse and brothers. Second, nephews/nieces. Whole group of people who support, depending on personal relations. For example, married sisters. Moment you get sick, everyone’s role comes into play.1085

Although family relationships are “highly structured,” according to this informant, how they are organized and play out under the conditions of illness or the end of life are based on unique prioritization of various relations within specific families. Despite this, when someone is in need of support, all family members are implicated and activated in some way. A Buddhist Tibetan in

Dharamsala said that it “depends on closeness, blood thicker than water. Should take care, their responsibility - spouse, kids, parents, siblings.”1086 This informant indicates that although family relationships are of the strongest type, similar to the Jain informant they also note that there is variation among specific families based on the strength of the bonds between members.

Only one informant spoke up on the question of whether friends would take care of them at the end of life; a Buddhist in Dharamsala who said “Depends. Few friends who could sacrifice.”1087 This simple statement speaks volumes on the many burdens that informal EOL caregivers often take on.

Three Buddhist Tibetans in Dharamsala wanted to talk more about the possibility of members of their temple or church providing them with EOL care. The first is the same person who spoke about there being few friends who would offer to provide EOL care:

1085 J-112614-J-008 1086 DSL-032615-BPHD-35 1087 DSL-040615-B-40

428

Will do what they can do, not spending many years taking care. For example, some monks come to do prayers. From spiritual perspective so important, traditionally everybody does. Social structure of Tibet so beautiful, so advanced, but put modern world system - completely destroyed. Conflict is lifestyle ideology. Traditionally, no problem, so much support. Some will come and help. If look at world history, yes some people did amazing bad things, some people did amazing things - German people who saved Jews. Almost equal to saving planet, their courage. Can’t judge in terms of number. If go deeper this courage so special, sacrifice life for benefit for other. Billions of animals, very few do that.1088

First they give the simple part of the answer: yes, typically monks come to say prayers for the dying person and although seen as crucial, their support does not go much beyond that. Next the informant contrasts life in pre-occupation Tibet, where people could always naturally rely on various types of EOL support, with contemporary times in which relationships between people and groups are fractured. I chose to leave the third part of their answer intact, even though at a glance and with the mention of “world history” it may seem tangential. If we connect their earlier mention of sacrifice as something that caring for the dying requires, perhaps based on the emotional, physical and even financial burdens that it entails, their mention of sacrifice in this answer has more meaning. Although using the example of the “righteous gentile” during the

Holocaust, it is used here to demonstrate the immensity and rarity of altruism, with courage as its foundation. The informant is deeply reverential of this selfless giving, but also reveals to us that they think that courageous altruism is the prime motivation behind EOL care, if only on a smaller scale to something like saving the persecuted. Another informant addresses the dying person who is without religious affiliation and/or alone:

No specific religious community, regional welfare if have no one to take care. Some patients with no social support, own community - common home town, they come to help, phalyul chigpa.1089 Single, late rites up to cremation from these people, might not

1088 DSL-040615-B-40 1089 is translated from Tibetan as “common home town” by this informant, and can literally be rendered as “same common place.”

429

know each other but same hometown come forward. Welfare group kyiduk,1090 “happiness and sadness,” among themselves too, might have help. Those in same group help with marriage, cremation, last rites.1091

This informant gives two possible EOL support networks for the person not having other supports, Tibetan welfare agencies or the extended community of those who hail from the same region of Tibet. In diaspora, Tibetan regional identity runs deep and also plays out in the monastic context as well with monasteries divided up into houses made up of Tibetans from the same area of Tibet. It was explained to me on one visit to the three major Gelug1092 monasteries- in-exile in south India that it helps keep harmony to have those with similar habits and preferences, such as with food, living together. Lastly, another said that “if stay in community, they will”1093 receive the support of their religious community at the end of life.

Only one informant, a Muslim in Cochin, spoke up when asked if there would possibly be no one to take care of them when they are dying: “Wouldn’t want to bother others. Take care of self, or medical system. Groups to help people, financially and physically, visiting, part of belief.”1094 It seems that they would prefer to be cared for by strangers, either HCPs or fellow

Muslims who are called by their faith to help the dying.

For the last question on EOL social support, four informants had more to say when asked if they wouldn’t have anyone to stay with them all the time if they were dying. The first was a

Christian in Cochin who answered with a personal story: “Myself, asked when hospitalized, realized matter is serious. Mother came to me and slowly realized that…‘[She is] in critical state,’ then everyone thinking about ‘[She is] helpless, we have to do,’ so she came. She

1090 Again, the informant gives us the translation of a Tibetan term. 1091 DSL-040815-BMD-42 1092 One of the four major lineages in Tibetan Buddhism, and that of His Holiness the Fourteenth Dalai Lama, founded by the fourteenth century Tibetan scholar-monk Lama Tsong Khapa. Literally meaning “system of virtue,” Je Tsong Khapa sought to revitalize Tibetan Buddhism through improving monastic discipline. 1093 DSL-042315-BRN-48 1094 C-020915-M-028

430 wouldn’t have come if not serious, very independent and busy.”1095 For this informant, there has been support, and likely would be again, but only under dire circumstances. Three Buddhist

Tibetans also added some thoughts with one saying that one must “take care of oneself mentally, need mind-training.”1096 Not only are they of the view that the person themselves must be their own support through the process of dying, harkening to the call in one of the texts on the discourses attributed to the Buddha to “be your own refuge,”1097 but also they refer to a particular genre of Buddhist teachings called Lojong1098 or mind-training. Tracing back to the Bengali master Atisha Dipamkara Srijnana, who straddled the ninth and tenth centuries, Atisha received such teachings from a master in Sumatra (now known as Indonesia) and subsequently brought them to Tibet.1099 One of the main themes of mind-training teachings and practice is to take difficult circumstances as the basis for the transformation of negative attitudes, although containing much more nuance. Considering this general approach, the informant suggesting these practices while dying, arguably the most difficult of life experiences, seems very fitting.

On having someone to be with them while dying, another said they “don’t need!”1100 They qualify this, though, by saying “never know, in last minute maybe very scared.”1101 The third

Tibetan, a HCP, said that for some people “if doesn’t have anything, unmarried, single, not dependent on other things. Some join society - pay and someone will help. Very few without attendants.”1102 In general, most have people with them when dying but some pay a form of

1095 C-021615-CNA-30 1096 DSL-032615-BPHD-35 1097 Walshe 2007

1098 , Tibetan Wylie: blo sbyong 1099 Mullin 1999: 11 1100 DSL-040615-B-40 1101 DSL-040615-B-40 1102 DSL-042315-BRN-48

431 insurance to get the EOL care they need. Still others who have no supports are, by the sounds of it, self-reliant.

End-of-life Preferences for Care Informants that participated in the questionnaire were asked seven questions about their own EOL medical wishes. The first four asked if with an incurable illness they would want to live as long as possible under various particular conditions, such as having respiratory, brain, swallowing or pain difficulties. The last three questions asked about some general preferences around quality of life versus length of life, location of their EOL care and medical emergencies while dying. As an ethnographer, I was most concerned during interviews with potential discomfort on the part of informants while asking these deeply personal and sensitive questions.

Questions such as these In general, people either were willing to answer questions about health, illness, death and dying or not and the sample size for this series of questions is comparable for both HCPs and non-HCPs as with other less personal question series, such as on who makes healthcare decisions. This is impressive and indicates that my worry was from my sensitivities alone. The answers were meant only to be answered numerically by the Likert scale, however several informants had more to say on the topic of each question, with a total of thirty-six.

Seven gave extra thoughts on the question of whether they would want to live as long as possible when having an incurable illness even if they had to be on life support or a breathing machine. Three informants thought that the chances for recovery would be the main determining factor in deciding whether to continue various life-supports or not. A Jain physician in Jaipur said “when know prognosis,”1103 and a Buddhist Tibetan physician in Dharamsala said “depends on quality of life.”1104A Christian in Cochin stated that “if my life is over, I should go”1105

1103 J-121914-JMD-019 1104 DSL-040815-BMD-42

432

Seemingly regardless of prognosis, a Sikh in Dharamsala was clear that they would “not like to live”1106 on life-support. Another Buddhist Tibetan physician in Dharamsala mentioned that if a patient needed life-support, at Delek Hospital that would “refer to bigger hospital,” however qualified this by saying that “those coming for palliative care don’t want intubation or resuscitation. DNR1107.”1108 A Buddhist Tibetan HCP in Dharamsala had a different view, saying that “as a human, or Buddhist even, if patient remains for one hour - benefit. As much time to live, it is better.”1109 This might be read as a purely vitalist perspective that holds life in and of itself, in any amount, as worthwhile. I understand the quote this way. The logic behind it, though, might be harkening to a common refrain in the various Buddhist traditions that even with a small amount of time left to live, a practitioner can make good use of it. Any religious practice, or actually anything at all virtuous, is seen as something which can assist both with the transition from life to death and into rebirth, and with gaining more favourable circumstances in the next life. However, in this context the person is on life-support which often is coupled with reduced levels of consciousness, either naturally or by design with HCPs using sedatives to prevent the patient from extubating themselves (pulling out their breathing tube). If the “benefit” this HCP informant is referring to has to do with engagement with religious practice or some form of virtue, we can easily imagine many religious things the conscious person on life-support would be able to do, or be merely exposed to. But what about the minimally conscious or unconscious person?

Here it is important to note that Tibetan Buddhist conceptions of the dying process include a series of dissolutions of the bodily elements in a particular order. Corresponding with

1105 C-021015-C-029 1106 DSL-042015-S-46 1107 Do Not Resuscitate. 1108 DSL-040115-BMD-37 1109 DSL-042315-BRN-48

433 each external elemental dissolution is the dissolution of a sense-faculty and an internal vision and experience. For example, according to the late Venerable Lati Rinpoche1110 the first dissolution is the earth element which corresponds to the form aggregate,1111 or body, and with that the eye sense ceases.1112 The body reduces “in size and strength,” and vision becomes “unclear and dark.”1113 These are external signs of the first dissolution. Internally, there is a vision “like a mirage.”1114 Rinpoche also writes that at this point “one has the sense that the body is sinking under the earth”1115 and “the impression of sinking is such that one calls out, ‘Hold me up!’”1116

The description of this initial dissolution phase very much matches my experience when physically caring for the dying. Countless times when I have turned patients in bed from side-to- side, with bedrails raised and supporting them fully, they still would often proclaim that they feel like they are falling. In both palliative settings and in Buddhist contexts, I have come across a common conception that the sense of hearing is the last to go. This, however, does not match the

Tibetan Buddhist reckoning of the dissolutions since the next in the eight stages of dissolution is the element of water which corresponds with the aggregate of feelings, and with this the ear sense fails.1117 Clinically, we can think of the dying person’s dry mouth, which is what is described as happening during this phase of dissolution.1118 So, by this account, hearing is the second and not last sense to fail. That said, it is common in most Buddhist traditions to have religious objects in view, and religious recitation in ear-shot, of the dying person. Four Buddhist

1110 Considered to have been the Chief Disciple of His Holiness the Dalai Lama, I had the privilege of receiving teachings from Rinpoche in the mid-90s. 1111 The five aggregates are thought of as the components of a living being and are form, feeling, thought, choice (or volition) and consciousness. 1112 Rinbochay 1980: 34 1113 Rinbochay 1980: 35 1114 Rinbochay 1980: 35 1115 Rinbochay 1980: 35 1116 Rinbochay 1980: 34 1117 Rinbochay 1980: 34 1118 Rinbochay 1980: 35

434

Tibetans in Dharamsala elaborated on various activities done in the presence of the dying person as a way to positively influence their state of mind. When I asked Dr. Chok Tenzin Monlam

Peltsok, the Head of Research and Translation at the LTWA, what he considered a good death to be, he offered this:

Peace of mind, inspiration, giving hope. Genuine believer in His Holiness the Dalai Lama, actually leave photo of Dalai Lama, video or sound, advice Dalai Lama as example. Root gurus, believe in what they say, that person’s photo etc. During process of death and dying period, they say good things all the time, inspire them all the time. Beautiful music that they love, as a Buddhist this creates attachment, not really good.1119

In addition to positive images and sounds, Chok mentions the avoidance of objects of desire.

This, in addition to admonitions to avoid open grieving around the dying person, are quite different than what is often typical in other EOL settings. Buddhism categorizes attachment as one of the “three poisons” of the mind, the others being hatred and ignorance. If the mind of the dying person is caught up in these rather than virtuous states of mind, such as the reverence a devotee has for their Guru, it can negatively impact the transition into the death-state, transmigration and the next birth as well.

For the next three, their answers were in response to another open interview question on what is end-of-life care. The Joint Secretary of the Department of Health for the CTA, Mr.

Thutop Namgyal, had this to say:

Care of patient…try to say good word, try to bring positive frame of mind to patient. Asking patient what you want to eat. Try to bring, from religious point of view, bring positive things to mind. His Holiness’s teaching. Only thing is patient’s mind, if mind positive then no suffering. Normally we see patient gets easily angry, not because nature angry but because illness made person angry, because disturbed, has illness. At same time this brings patient too much suffering, not happy inside. Giving him positive things, taking good care, standing by patient every time, this will give immense help, happiness to patient. We have wife, son, sisters, families, expect so much from them. We feel that at time of difficulty we stood by each other. We feel that patient left isolated, no co-

1119 DSL-032615-BPHD-35

435

operated enough then real suffering begins. Taking good care of patient at time of suffering - this is main thing, works more than medicine.1120

This informant similarly suggests positively influencing the mind of the dying patient, through religious means, social support and accompaniment (sometimes referred to as “witnessing” in palliative care circles). However, we might question the suggestion of offering their favourite foods in the context of the potential to generate desire. Although intended as a kind gesture, anything that can generate desire or other afflicted states of mind are typically recommended against in Buddhist EOL care.

Mr. Tsering Norbu, a translator at the LTWA, gave these recommendations: Main thing try to arise a positive mind in person who is dying. If person died with strong negative mind, then make more negative karmas and have to experience in next life. Turning point, consider to have positive mind at time of death. Place statue of Buddha and His Holiness the Dalai Lama in front of person dying, and this is common way for ordinary. For scholars, reflect on bodhicitta1121 and compassion. Ordinary people cannot do like this, no training.1122

In addition to suggestions of external positive influences on the dying person, Tsering la broaches the important topic of the internal contemplations that can be done by the dying person themselves to generate wholesome states of mind. Since non-scholar Buddhists also have the opportunity to learn about wholesome subjects such as compassion, I am not entirely clear on the distinction made here between scholars and “ordinary people.” It could be that they are talking about non-Buddhists, to which I am less inclined, but it could also mean that more advanced practitioners have the training to engage in contemplation during the dying process. Not every

Buddhist would have the ability to do this as it is a special skill to engage in religious practices during the difficult processes of dying.

1120 DSL-032715-B-36 1121 Literally “the mind of awakening” which is often described as the altruistic wish to become fully enlightened for the sake of all beings. 1122 DSL-040415-B-39

436

Despite the idea that vision followed by hearing fail in the dying person, the use of physical religious objects and religious recitations often accompany the entire dying process and even into the post-mortem state. This can be explained in at least two ways. Firstly, even if the sense faculties that could perceive such things have failed in the dying person, another concept deployed in tandem with the promotion of virtue in their mind is the accumulation of merit on behalf of the dying and/or deceased. Sometimes referred to as a “transfer of merit,” this would be a different operation than the types of virtue encouragement that are employed before the person becomes withdrawn, and would not require the person to engage. Next, after death there is an

Indo-Tibetan concept of the in-between state, called the bardo in Tibetan and antarābhava in

Sanskrit1123, referring to the time between death and rebirth. It is held that there is a type of illusory body1124 in this state, which undergoes a mini-death and rebirth every week for seven weeks adding up to forty-nine days. These bardo-bodies of the deceased can travel anywhere with a thought, but tend to hover around their previous connections of people and place all the while unable to interact. Despite this, the bardo-being can hear, and this is the logic upon which the Tibetan Book of the Dead, or Bardo Thodol, is based. The text is essentially a guidebook for the bardo-beings to help them navigate the in-between state, and is recited for the previously mentioned forty-nine days leading up to rebirth. Suffice it to say that there are still strong reasons for those around the dying person and deceased to continue to engage in religious activities for their sake.

Lastly, Dr. Tseten Dorji Sadutshang the personal physician to His Holiness the Dalai

Lama, Delek Hospital CMO and Medical Advisor to the CTA, said this:

End of life…respect wishes of patient and relatives, not like to be very invasive. If don’t like and not necessary, not keen to let person slip by or accelerate person to death like cut

1123 Hopkins 1992: 290 1124 Hopkins 1992: 290

437

off IV. Good we don’t have a vent here! Would refrain from doing these things. Feeding: we use feeding tubes, not go against that. Allow any sort of spiritual or traditional religious rituals that they might like - no special trend, we encourage here in hospital. Maintained kept CDs of certain teachings like His Holiness will be played by earphone. If someone not conscious or too weak to speak, we allow that, use traditional medical stuff like healing incense, massage oils, other techniques: release opening wind channels. For weak and cachectic1125 patients, talk to relatives and family and guide so how to behave at end of life. Not just patient, but importance of behaviour of those near ones, no negative emotional contagion around patient, gentle.1126

Dr. Tseten also mentions religious influences on the dying person, and adds such things as incense and massage to the various approaches that can be of benefit. Dr. Tseten also affirms that the grieving of loved-ones around the dying person is recommended against. It is his discussion of ventilation and artificial feeding, though, that is a good segue to return to the consideration of prolonging a patient’s inevitable demise through various heroics when the chances of recovery are low. Although at Delek they do not necessarily stop artificial hydration and feeding of people nearing the end of life, Dr. Tseten hints that decision making might be more complicated if the option of ventilation was available. It is typically easier to start ventilation than to stop it. Such advanced heroics for fundamental physiological functions might be seen as in tension with the

Buddhist principle of impermanence, or the momentariness of compounded phenomena.

Contemplating death and impermanence is encouraged in all Buddhist traditions as a way to prepare for one’s own death and the death of close ones. It might be said that Buddhists wishing to languish on a ventilator when there is no hope of improvement for the mere sake of being alive, or those who make substituted decisions for others in this regard, have taken the sanctity of life so far as to make it an attachment to life itself. The craving for “becoming” is said in many

Buddhist texts to be the cause of remaining in cyclic existence. It would seem that the concept of impermanence could encourage and allow for the natural process of dying to occur. However,

1125 Wasting syndrome, or extreme weight loss. 1126 DSL-040715-BMD-41

438 healthcare choices are up to individuals based on their own values and beliefs which may or may not align with normative religious positions. That said, respiratory failure would end with death at Delek Hospital since the choice to ventilate is not even on the table.

Another Buddhist Tibetan in Dharamsala had quite a lot to say on the issue of heroic interventions:

Depends, because normally cancer patient they want to live as long as possible, live normal life. Nature of illness causes them to die slowly, kills them slowly. Patient themselves wants to die sometimes. When body not responsive, no longer want to live. When look at body become sick and helpless, they made up mind “don’t want to live longer.” Might feel like that. At some point cancer itself kills person, slowly tumour goes around body and stops breathing eventually. To be very honest, every patient wants to live longer, nobody wants to die. Buddhist point of view, longer life to earn merit/good karma. When young don’t feel we need good karma - healthy happy, don’t find necessary. As years pass, in examination at end of year, in middle of year, relaxed but as end comes near need more days for exam. Same thing for us. We should do religions, earn good merits and take care of health. Religion and science should go hand-in-hand, parallel. We don’t do that. We feel health because of our age. As years pass health gives problems, didn’t learn much about religion. Need more days, then very late.1127

This informant states that in general people want more life, but that sometimes if the body has become an unbearable burden people might not want to continue in such a state. If the view is that with more life there can be continued generation of merit, then for the person who is so advanced in illness or actively dying they no longer have the wherewithal to engage in virtuous activities, it might be too late. The informant also compares death to an academic exam. When we are unprepared, we hope for more time. Rather, it is better to start early so that when the end or the exam comes, we are ready.

Three informants made comments when they were asked if when having an incurable illness they would want to live as long as possible even if they were brain-dead. A Jain physician

1127 DSL-032715-B-36

439 in Delhi said “not able to communicate,”1128 which might simply be a statement of fact regarding the brain-death. Another Jain physician, this time in Jaipur, said that clinicians “can’t take consent” processes over on behalf of the patient, but rather that it is done by “whoever is nominated.”1129 A Christian in Cochin said that “as long as life in me I want to live. I don’t want anyone to take my life.”1130 This informant holds a vitalist stance, or life at all costs, but does not distinguish between active hastening of death and passive withdrawal of life supports.

Four informants added comments when asked if when having an incurable illness they would want to live as long as possible even if they had to be fed through a tube, or a “pipe” which seemed to be the more common term in India. A Jain physician in Delhi said “if permanent, no. Temporary, ok.”1131 Three Buddhist Tibetans in Dharamsala also spoke up. One said “but, all these three questions, physically dead. If the mind is clear, Buddhist perspective, if practitioner, if mind works, compassion/bodhicitta, should be given chance.”1132 It seems that this informant is saying that those who are ventilated, fed artificially or brain dead are all

“physically dead.” Although many (but not all) agree that brain death indicates clinical death, it is hard to see how ventilation or artificial feeding could determine death. It could be that they are saying that without such interventions, the person would die. The point the informant is making, though, is that to them even if body functions fail, living is still worthwhile if the mind still functions and able to cultivate virtuous states. Another informant said “NG…sometimes OG” and thus simply distinguishing between “naso-gastric” (via the nose) and “oral-gastric” (via the mouth) feeding tubes. Lastly, another said “consider others also. Personal choice, could be a

1128 ND-111114-JMD-003 1129 J-111914-JMDNA-005 1130 C-021015-C-029 1131 ND-111014-JPHD-002 1132 DSL-032615-BPHD-35

440 sacrifice. Don’t want to live, others want you to live.”1133 This seems to be suggesting that there can be times when the person might choose to continue to live mainly for the sake of their loved- ones.

Another four informants had more to say when asked if when having an incurable illness they would want to live for as long as possible despite being in severe pain. A Jain in Delhi said if “incurable, no. Curable, more than fifty percent, ok. Medical opinion, honest not for money.”1134 Again, three Buddhist Tibetans in Dharamsala added comments, with one saying this: “But if that causing so much problems to other human beings, resources/money going to waste. If there no chances of improvement, just unnecessary causing relatives problems, even doctors. Even though they all are doing a good thing for me, earning merit, both ways.”1135 This informant would weigh their decision to live through great pain by also considering the chances for recovery and the burdens on others, financial and otherwise for both loved-ones and HCPs.

They also mention some reciprocity between the patient and those caring for them, with the patient benefitting from the support but also those caring for them generating merit from such assistance. Another said this: “double-edged. Milarepa lived in mountains, such genius. He is not wasting time in cave, each moment so long, each effort has a result. They do something, for something. That is dilemma: can make spiritual practice go up.”1136 This informant looks at living in pain from two perspectives. The first is merely experiencing the pain, which is ordinarily seen in Buddhism as not having much benefit other than perhaps burning off some accumulated bad karma. The other is taking difficulties onto the path in the way that Shakyamuni

Buddha and Milarepa, a great Tibetan yogi who straddled the eleventh and twelfth centuries CE,

1133 DSL-040615-B-40 1134 ND-111014-JPHD-002 1135 DSL-032715-B-36 1136 DSL-040615-B-40

441 did while undergoing their respective austerities. Milarepa is well known for possessionless cave-dwelling, turning green from eating only nettles and showing his student Gampopa his calloused behind as his final teaching to demonstrate the diligence of constant practice without even so much as a cushion. The difference between practicing austerities and the experience of pains that accompany illness is that the former is voluntary. The “dilemma” the informant speaks of seems to be that pain can be managed through various means, but the pain can instead be consciously endured and used for purification and mind transformation. The last to comment, a physician, said that “usually” patients “do not want to live”1137 with severe pain.

Four informants also commented if when having an incurable illness being comfortable would be more important than living as long as possible. This question is an inverted version of the previous question. A Hindu in Jaipur said that “quality life more important”1138 than length of life. Two Buddhist Tibetans in Dharamsala said more, including a physician who said that among their patients “some say don’t want medicine.”1139 Another said that it “depends on situation. State of mind very good, physical pain - then better to live. If mind bad then not much function, then no use. Better to change the “guest-house”1140 This informant feels that the determining factor on whether to live with the pain of a terminal illness or not is cognition.

Without a mind that functions well, he suggests that it is better to change bodies, which they liken to a guest-house, through the processes of death and rebirth. Similarly giving mental function as crucial to such a decision, a Sikh in Dharamsala said that living with pain would be worthwhile only “if you can meditate.”1141

1137 DSL-040815-BMD-42 1138 J-122414-H-020 1139 DSL-041815-BMD-45 1140 DSL-040615-B-40 1141 DSL-042015-S-46

442

Six informants commented on whether being at home would be more important than being in the hospital when dying. A Jain physician in Jaipur said that home is “more comfortable.” 1142 A Muslim in Cochin said that it “depends on stage” 1143 of the illness progression. Four Buddhist Tibetans shared extra thoughts with one saying that “being at home” is an “individual case. If home more comfortable and support, then [I strongly agree], if no facilities then [simply agree], but always home. Mental attitude and mental qualities”1144 are most important at the end of life. An HCPs said it “depends”1145 and, similarly, a physician said that it “depends on individual. Few, like majority to die peacefully at home, family afraid if in pain or not able to take orally. Here we have IV and medication so not so keen to go home. Same thing, home then hospital.”1146 From this and the first Tibetan to answer this question it seems that there is a tendency to prefer to be at home when dying unless extra medical support is needed. Another said that there can be a “third choice, to be inside nice environment, something near to monastery. Special place, energy different.”1147

For the final question in this set, eight informants had more to say when asked if they had an incurable illness and could be taken care of at home, would they still want to go to the hospital or the emergency room. Several informants, such as a Christian in Cochin, stated in various ways that it “depends on situation.”1148 A Muslim in Jaipur said that if “fifty percent good stay at home, [less] than fifty percent to hospital.”1149 A Hindu said that getting emergency care would not be necessary “if getting good care at home.”1150 Four Buddhist Tibetans in

1142 J-121914-JMD-019 1143 C-020915-M-028 1144 DSL-032615-BPHD-35 1145 DSL-042315-BRN-48 1146 DSL-040815-BMD-42 1147 DSL-040615-B-40 1148 C-021615-CNA-30 1149 J-111714-M-004 1150 J-122414-H-020

443

Dharamsala spoke up such as one who said it “depends. If can be alive again hospital, if no chance then home.” 1151 A physician said that patients “for emergency would come” but

“critically ill due to old age and disease, would not like to come.”1152 Another physician said that for “lots of cancer patient, Hep B related, upper GI related, usually try to come to hospital for end-of-life treatment. Family members worried about the patient. If have care at home this is better. Most don’t have that setup.”1153 In this physician’s experience, home is the preferred site for dying but is not an option for everyone. Also, for certain conditions, hospital is preferred despite another HCP saying that “relative - some don’t want to bring”1154 to hospital. Lastly, a

Sikh in Dlehi said that one “cannot sleep in hospital. Patient crying “oh god!” How can sleep?”1155

Of the eight questions on EOL care preferences, the most number of informants added more thoughts on the possibility of getting emergency care when dying, the next most spoke on being ventilated, and finally the third most discussed home versus hospital.

Religion and Healthcare/End-of-life Decision-making

This section will explore informant views on the influence of religion on healthcare and end of life decision making respectively, and be subdivided to reflect the three main stakeholders in the circle of care: the person, the family and healthcare professionals.

The Person/Patient

Informants were asked twice whether religion affects or would affect their own health care decisions and decisions at the end-of-life, once during the questionnaire and again in the

1151 DSL-032615-BPHD-35 1152 DSL-040815-BMD-42 1153 DSL-041815-BMD-45 1154 DSL-042315-BRN-48 1155 D-010615-S-024

444 open part of the interview. In the questionnaire healthcare and EOL decision making were asked as separate questions, whereas in the open interview they were lumped together. The thoughts of forty-six informants (n=46) from the two distinct parts on the interviews have been brought together and grouped under affirmative, negative and split answers (between healthcare and EOL decision making) as well as those answers in which the informant was either undecided on their stance or had a position dependent on various factors.

Of the twenty-five informants, or fifty-four percent (54%), who thought that religion does influence healthcare and EOL decision making, two simply affirmed this, a Jain in Jaipur and a

Buddhist Tibetan in Dharamsala.1156 A Hindu in Delhi said specifically about religion affecting healthcare decision making that “worldview constantly changing, narrative, yes.”1157 A Jain in

Jaipur said that despite there being “not much” of a process in healthcare decision making, there are “certain people who seek advice of religious Guru, who are very devoted. Otherwise, religious part assimilated part of life that automatically influences. My wife would not eat garlic and onion so no amount of doctor advice would force her to take it!1158 This informant mentions both the explicit influence of Jain religious representatives on healthcare decision making for some who seek their guidance, as well as implicit religious influences from Jain normative orthopraxy. He gives as example the Jain avoidance of root vegetables which comes from the practice of non-violence and conceptions of what constitutes life. A Jain scholar explains why

“[r]oot vegetables (anantakaayas)” are among dietary “[pr]ohibited items”:

Reasons for Prohibition… Eating these causes violence to innumerable one sense living beings, as many souls live in the body of one root vegetable. Vegetables grown above the ground have one being in one seed, fruit or flower. Jain seers have identified thirty-two types of such root vegetables, such as potatoes, onions, garlic, carrots.1159

1156 J-122514-J-021, DSL-032515-B-34 1157 ND-110814-H-001 1158 J-112614-J-008 1159 Shah 1998: 251

445

The one sense living beings referred to “are the so-called ” which are, according to another Jain scholar,

sub-microscopic…creatures…and possess only one sense, that of touch. They are so tiny and undifferentiated that they even lack individual bodies; large clusters of them are born together as colonies which die a fraction of a second later. These colonies are said to pervade every corner of the universe; in the earthly realms, they inhabit even the tissues of plant, animal, and human hosts.1160

This scholar qualifies the Jain avoidance of foods containing by saying that

[w]hile Jainas take very seriously the destruction of nigoda, it should be noted that violence against these creatures is considered far less terrible than that against higher animals. Thus a Jaina may on rare occasions consume medicinal preparations made with honey or wine, but under no circumstances may he take meat.1161

The same logic against destroying nigodas by eating root vegetables is applied to honey and wine, and can cause avoidance of certain medicines. Jain nun Prasannamata Mataji is quoted in a book by Dalrymple as saying that Jain monastics avoid biomedical formulations in general because they are typically made with animal products and also use animal testing in the development.1162 But among householders, there is sometimes more flexibility. However, despite the flexible approach of some, by the sounds of it the informant’s wife would not take anything composed of substances that risk the lives of nigodas even for medicinal reasons and on doctor’s orders. Her strict application of the normative Jain avoidance of such items would surely affect her approach to healthcare decision making. Conveniently, I’ll next mention a Jain monastic informant who said that for healthcare decision making among Munis their “Guru makes decisions. Ask them, sadhu1163 becomes ill, sravaka1164 comes ask guru, sravaka travels to

1160 Jaini 1998: 109 1161 Jaini 1998: 168 1162 Dalrymple 2009: 23 1163 A term used in all Indic religions to refer to a dedicated religionist, either belonging to an order or not, but in the Jain context means a monastic. 1164 Another shared Indic term but here meaning a lay Jain.

446 guru.”1165 So, if a Jain monastic is sick, and their teacher is not nearby, a lay Jain will travel and ask for counsel on behalf of the monastic. This nun makes it clear that their teacher makes healthcare decisions for them, as affirmed also by Prasannamata Mataji in Dalrymple’s book.1166

Two Muslims in Jaipur affirmed the influence of religion on decision making with one saying

“yes, talk to Allah to help feeling good, feel relax.”1167 Although not speaking to decision making explicitly, this informant tells us that communication with the divine can improve one’s emotional state and presumably improve decision making processes. Another, specifically addressing healthcare decision making, stated that “in ayats (verse) Qur’an, read it, breath on the part (from mouth), help improve myself. Sūrat al-Fātiḥah1168.”1169 Fascinatingly, this Muslim also does not mention decision making itself but, rather, religious speech-acts positively affecting the person. After reciting the verses, the person then blows on the affected body part to help with healing. Two Jains in Jaipur thought that religion affects decision making with one saying “yes, influences. So much a part of life here that whole life somehow or other connected…”1170 In their view, religion is so embedded in the Indian lifestyle that it inevitably also enters into the realms of disease and dying. The other said

Yes. One close person believed a lot in husband, and he takes all decisions for that family. In hospital detected [husband has] terminal cancer at last stage. Lived fifteen to twenty days. Wife very strong. When wanting to go to ICU/vent she didn’t want, want him to see family during last hours, days. Wife’s religious background accepted end of husband’s life has come.1171

This informant’s narrative gives the spouse as making decisions on her husband’s behalf, and is shared as an example of religion assisting the adherent with coming to terms with the inevitable

1165 D-011015-J-025 1166 Dalrymple 2009: 23 1167 J-111714-M-004 1168 This is the opening chapter of the Qur’an in which the ayats mentioned appear. 1169 J-121314-M-016 1170 J-112614-J-008 1171 J-120414-J-013

447 and deciding against heroics. However, this informant showed some dissonance between their answers since during the questionnaire they did not think that religion affects medical decision making since they held the two spheres as distinct. A Jain physician in Jaipur said that “Jains donate their body to medical college. Even brain death, they like to donate. Religious belief that make them compromise with death. Other people, some don’t accept death. Miracle cure.”1172

Religion can lead to gifting one’s , and although they hold that religion “certainly”1173 affects decision making, for the end of life it can lead them to either accept the end or hold out for improvement, however seemingly unlikely. A Sikh in Delhi said that religion “definitely” affects decision making and elaborated:

Someone have normal illness (cough, fever, chicken pox). If treatment not coming well, there is water amrit1174 people drink that and become well. Blessing from God. By nature, fruit from tree hard on tounge. Reetha: Guru Nanak with Muslim, Muslim is hungry, Guruji says pick reetha. Muslim says it is like chilli [flavour], Guruji encouraged to eat and was sweet. If people have problem and hungry they take. Each Gurudwara1175 has this water people drink, bath in amrit, removes chicken pox.1176

This informant mentions two natural remedies, drinking or soaking in amrit or blessed water and eating reetha or the soapnut which is known for its bitterness. The gist of the story of Guru

Nanak is captured, however it is typically told with the other player as a Hindu ascetic, not a

Muslim, and bitterness rather than spiciness being miraculously transformed into sweetness.1177

In response to the question of religion influencing healthcare decision making, this Sikh indicates that some adherents will choose substances that are considered to be spiritually charged to

1172 J-121914-JMD-019 1173 J-121914-JMD-019 1174 Hindi and Punjabi for “nectar.” 1175 Sikh place of worship. 1176 D-010615-S-024 1177 Budhwar 2010: 205

448 address certain ailments. Speaking specifically on healthcare decision making, a Hindu in Delhi said that “prayer for long life”1178 can be deployed. A Muslim in Cochin said that religion

affects in a good manner, so far. Was not so religious a few years back, did not even pray, so busy with life. At those times gained more weight, some pains, used to take less water, renal pains. When took namaz,1179 benefits physically and spiritually, and continued.”1180 This informant became more observant after experiencing both health and spiritual benefits coming from Muslim prayer. On EOL decision making they said that “almost all Muslims believe want to die as a Muslim, shadada (oath). Ashhadu alla ilaha illallah muhammad ansurasuru.1181 Desire for a Muslim to say this and die, close to heaven.”1182 As with the other

Muslims quoted above, this informant doesn’t speak of decision making itself, but rather on religious recitations testifying religious identity in preparation for death and the afterlife. Three

Christians and one Jew in Cochin elaborated on the topic. The first Christian said that “yes” religion affects healthcare and EOL decision making, and gave a personal example of how this might play out at the end of life by saying that they “wouldn’t want anyone to take my life, don’t believe in euthanasia.”1183 Another said that “if I am in a place nuns/priests taking care of people who need help, they can make decision. Has to be good for person, have to talk to me first!”1184

In this case, the informant thought of contexts in which caregivers are clergy and allows for them to make decisions but only if in their best interests and with their permission. On healthcare decision making, they also said “I was reading Bible, because hospitalized and nothing today.

Mother gave to me, more relaxed.”1185 Although not referring to decision making, this informant

1178 D-020515-H-027 1179 Muslim prayer, done five times daily. 1180 C-020915-M-028 1181 The ash-shahadatayn, or the two Muslim “Testifications of Faith,” are “I bear witness that no one deserves to be worshiped except Allah and I bear witness that Muhammad is the Messenger of Allah.” (Association of Islamic Charitable Projects In Canada) 1182 C-020915-M-028 1183 C-021015-C-029 1184 C-021615-CNA-30 1185 C-021615-CNA-30

449 remembers scripture soothing them while being treated in hospital. The third Christian said that

“I do” think that religion affects decision making because “in Catholic Church abortion not considered right, not holy. Considered to be a sin.”1186 Similar to the first Christian informant who applied decision making specifically to euthanasia, as something that their Christian beliefs disallow, this informant speaks of how Catholic teachings on the beginning of life would make pregnancy termination impermissible for them. The Jewish informant said that “of course” religion affects decision making:

That’s why follow the kashrut1187, go for vegetarian. When I travel, go veg. Singapore: we cook ourselves, rented apartment and cook for seven days. Need small vessel, even though vessels clean we boil, and utensils. Don’t know how cooked, clean then again clean then boil, sterilize. Both did cooking. He is a Hindu but like my son. Any decision he asks me…1188 It is not abundantly clear why this informant spoke about diet when asked about healthcare and

EOL decision making, but it could be that he understood the question as referring to health in general. Many, including some Jews themselves, think that the laws of keeping kosher are predominantly health-related. Some Jewish scholars disagree:

The most common misconception is that kashrut is an ancient health measure, which, while suitable in pre-modern societies, is an anachronism - given present-day methods of slaughtering, regular government inspections and sanitary food preparation... Of course, kashrut includes concern for cleanliness and good health, but...the purpose of the kosher laws is not health, but holiness.1189

Although seen in this normative context as not the main purpose, health is indeed included among the concerns in keeping kosher and not unreasonable for the informant to connect the

Jewish diet with health. Vegetarianism solves many of the challenges in keeping a kosher diet, however, because strict kosher requirements disallow using the same cooking and eating utensils

1186 C-022815-C-33 1187 The Jewish laws around keeping kosher in which generally there is an avoidance of eating milk with meat, and refraining from pork and any marine life that do not have scales. 1188 C[E]-022315-JW-32 1189 Dresner 2000:1-2

450 for milk and meat, their solution while abroad was to do their own cooking and sterilization of materials. Although it still remains slightly opaque as to the informant’s understanding of the connection between healthcare decision making and diet, or even health and diet, later he mentions a close Hindu friend who is treated like family and who comes to the informant for assistance with decision making, presumably including that related to healthcare. A Sikh in

Dharamsala said “sure,” religion affects healthare and EOL decision making by way of “positive thinking, good deeds. Sure, it varies from man-to-man.”1190 The remainder of the informants to address the topic were Buddhist Tibetans in Dharamsala. A doctorate holder said this:

In Tibetan world, in past, very influenced by Buddhist teachings. Very, very much. Uneducated illiterate cannot read Bardo Thodol or other teachings, don’t know about dissolution of elements takes place, so many signs and symbols. From patient’s physical radiance, eyes, water, tears, snot, lips, can see what is being dissolved. Doctors know, Lamas know, patient will feel choo choo (cold) even tough not falling. Explained in many Buddhist texts.1191

Earlier in this appendix we discussed the Tibetan Book of the Dead in the context of the elemental and sense-faculty dissolutions. Here, the informant indicates that based on these teachings, Tibetan religious and medical experts can track the phases of the dying process based on observable physical signs. Knowing this could certainly help with EOL decision making, such as medical management shifting to a comfort focus if the person is actively dying, and potentially help to keep families informed as to the status of their loved-one. In the same interview, when asked who makes healthcare decisions, this informant also stated

Don’t know. I ask Rinpoche1192, do I have obstacles this year? Yes or no? If there is, he will say “do this.” May say “no problem, either way you do some kind of tingjo,” asking unseen forces to help for good health. Nechung1193 tingjo, lungta1194 flags, in past every

1190 DSL-042015-S-46 1191 DSL-032615-BPHD-35 1192 Rinpoche means “precious one” in Tibetan and is used as an honorific title for high Lamas or teachers. It is a default title for recognized reincarnates, but not exclusively used in this way. 1193 The primary oracle of Tibet, which at times gives direction to His Holiness the Dalai Lama (the previous Nechung helped Him escape Tibet) and the Tibetan government. The human medium channels the nechung deity and there are successive mediums over time. The current oracle became activated after spontaneously falling into

451

year pujas1195 individual families invite lamas. Preventions. Second last day of new year drink thukpa:1196 clean the bad unseen influences. When I was a kid (don’t do at home) in TCV,1197 have yak tail, then fire here and before thukpa, pak,1198 take hair or pieces of cloths, and give it to lu1199 (evil thing), throw remaining thing (normally use fire), go to every corner and say tuchema go away bad forces. Lu effigy, then at crossroad, chomed lamp candle, never turn back until enter house. Every family, even in Tibet.1200

Not only does this informant share that he consults his Lama for predictions and advice for his health as part of his personal healthcare decision making processes, he also gives us elaborate examples of oracular prognostication and various rituals used to eliminate obstacles and purify negativities that can contribute to ill health. Another, when asked if religion influences healthcare and EOL decision making, said

Of course. Positive development of mind. When mind healthy, you are healthy. At same time, take care of food, fitness. Hand-in-hand, religion and fitness. End of life, of course religion need to take care. So much thing if suffer at time of death. Very painful death, this will eventually shed off/decrease bad karma.1201

This informant sees religion as helpful for mental health, but notes that diet and physical exercise should be incorporated into the adherent’s lifestyle. They also state that religion can be positively influential at the end of life, but does not clearly indicate in what way. They seem to infer that religion can be used to reduce suffering at the end of life, while also stating that experiencing

trance while channeling the deity. It is a dubious honour as it is said that the energy required to channel in such a way is such a burden on the human body that their lifespans are typically reduced as a result. I saw the Nechung in trance one time in the early morning at Drepung Gomang monastery in Mudgod, in South India in the early 2000s. The attendees became quite excited and a ten foot red pole is used to control the crowd, bonking some to prevent them from getting too agitated. Devotees seek blessed barley seeds which the Nechung distributes to individuals or sometimes tosses out to those gathered. Some feel that such blessed seeds will help packages arrive safely. 1194 Meaning “windhorse,” a type of prayer flag which is understood to have its blessings activated by the action of being blown by the wind. 1195 Prayer ceremony usually with extensive offerings. 1196 Tibetan noodle soup. 1197 Tibetan Childrens Village, a network of orphanages for Tibetans in India. 1198 Balls of tsampa, or ground barley (a staple in the Tibetan diet), made after being mixed with tea and butter (butter-tea is another Tibetan staple, usually made with salt). 1199 Lu means “body” and is referring here to an effigy symbolically representing negativities, akin to the use of the scapegoat in Biblical times. 1200 DSL-032615-BPHD-35 1201 DSL-032715-B-36

452 suffering while dying itself sloughs off bad karma. A physician said that religion plays an

“important role” since “patient believe it effect patient’s [next] life and karma, totally agrees to it to dying.”1202 On EOL decision making, they mentioned “life after death.”1203 Although not speaking to the medical side of EOL decision making, the informant gives the patient’s consideration of the next life as something that might encourage them to be more religiously focused as they approach the end. Another said that

whether we can afford the treatment or not, if we have mentally very sound viewpoint then this can mentally…prepare face problem more easily. If cannot prepare mentally to face problems, then danger of taking suicide and other things. Even if very serious physical problems, if stay mentally strong then physical problems acceptable.1204

For this informant, religion is something that can help the person endure difficulties, including physical illness. Another physician said religion is for “giving proper protocols. Depends on life after death, quality of life: if resuscitate, poor prognosis, then second thought of resuscitating.

Not duration but quality, how well live.”1205 This informant seems to not only emphasize the importance of quality of life over length of life, but that this quality of life can have an impact on what happens after death. A traditional physician had quite a bit to say on the issue of religion and healthcare and EOL decision making:

Yeah, affect, influence more with people. Too much weakness, especially mentally people coming, become hopeless. More practitioner of Buddhism, Hinduism, Christianity, Sikh they feel that [helps]. For me, when small got many little knowledge from master, parents, local place. Ancient Buddhist system, Buddhist country, later come to here, many teachings from His Holiness and great Lamas, learning and practicing meditation. Always say before consultation “always recite Medicine Buddha ritual, also mantra, pray to great masters, medicine, other prayers to much recover more.” Much more helping for patient during day-to-day treatment, more feeling, more kind, help closeness feeling with patient. Then makes more happy with myself, my life, going to health for people, helping people, benefit for others. I am serving for others, makes my mind more peaceful, more happy, more good environment. Also some patient making

1202 DSL-040115-BMD-37 1203 DSL-040115-BMD-37 1204 DSL-040415-B-39 1205 DSL-040815-BMD-42

453

many questions, crying, case histories about families. Some patient coming not saying firstly sharing disease, sharing family problems, giving answers and discuss, then more happy. I myself also through religious practice never disturbed by patient. I really feel if they question I give answer, if asking I also sharing, very good for helping them and me. More knowledge for me. Times with people they also having doctors giving advice, they get more satisfied. If not practice living kind, help others, then something like feel like duty, business, benefit my own life, then question. Feel noisy, uncomfortable, not to talk/ share automatically. At beginning at consultation my “life going for patient, serving for patient, helping patient, spend my life public health for people.” So many people make problems, then I do not feel unhappy, I feel more happy with people in clinic, behind mentally by practice of religion influences.1206

This practitioner of traditional Tibetan medicine tell us that they encourage their patients in religious practice to help with their recovery. They also share that they themselves, through receiving religious teachings, practicing meditation and cultivating an altruistic intention, are more able to help others and endure the challenges of their work, which naturally benefits themselves as well. Without kindness and altruism, they say, the work of being a physician would be merely a business, purely out of self-interest. One of the most interesting observations that they reveal is that patients often do not start a visit discussing their chief physical complaint, but rather other contextual difficulties such as family struggles. This speaks of a deep rapport between the traditional physician and their patient, as well as a holistic approach to healing. In response to a question on the influence of religions on healthcare and EOL decision making, this informant insightfully describes how it is their own personal development and religious training and practice which allows them to more ably address all of their patients concerns. Lastly, a biomedical physician shared their thoughts:

Yes, end of life care. In palliative care if we say “we don’t give much,” if terminal patient - what is use of giving so much fluid? In a discussion, suppose in medical discussion, if patient on oxygen have to pay for it. Patient is poor, using lots of oxygen, for us we say “we can extend his life as much as possible, he can generate mindfulness or transformation of life to next anytime.” To make that, have to survive life first, after life have mind confusing. Lots of resources. Or in coma, if you cut down oxygen they will

1206 DSL-041115-BND-43

454

die, but we say “keep it, could revive anytime.” Mindfulness and alertness of mind can happen subconsciously. Not talking to us but might be transforming… Acceptance of death, much easier to accept as they are transforming to next life. If they have been a good human throughout their life, I think they have pride to be born as something good as human in next life. Vice versa, might die with regret.1207

This physician has concerns with interventions that might not being much benefit to the dying person, such as hydration and oxygenation. At the same time, there seems to be tension when the outcomes are not as obvious, such as continuing to oxygenate a comatose patient in the hopes that they might emerge from the unconscious state. However, this doctor admits that it is hard to know what is happening in the mind of the comatose person and allows for the possibility that their process of preparing for transmigration might well be occurring in the unconscious state.

The informant also brings in resource concerns to EOL decision making. In tandem with considering the benefits versus burdens of certain interventions, along with their cost and the challenges inherent to prognostication, Buddhist Tibetan HCPs and their patients are influenced by thoughts of the next life for the dying person. Since it is held that the way they lived up until then will determine the quality of the next birth, this can positively or negatively affect the dying person’s state of mind. Because of this, and the thought that the mental-emotional state of the person right up until the last moment of life can further influence rebirth, especially the state most proximate to the moment of death, we find much encouragement for those around the dying person to influence them towards virtue as also discussed earlier.

Of the ten informants, or twenty-two percent (22%), who thought that religion does not influence healthcare and EOL decision making, seven simply said “no.”1208 A Jain in Jaipur, on religion and healthcare decision making in particular, said “for me two totally separate

1207 DSL-041815-BMD-45 1208 J-120114-H-010, J-120214-M-011, J-122414-H-020, J-123014-H-023, D-020515-H-027, DSL-041715-S-44, ND-042815-S-49

455 things,”1209 although they also said at another point in the same interview that religion is influential on healthcare and EOL decision making. A Hindu in Jaipur had quite a bit to say on the topic:

End of life, for me I think no, because I won’t care the heaven/hell, I don’t want moksh.1210 I want to come again to see the nature again and again, like a traveller. That is my thought, go and come again! I don’t care for any shape, animal/man/woman [anything will do]. Sometimes I feel for myself, I feel it [shows phone, paperweight, crystal/dusty]. Nobody knows why it’s here, when will go, by whom, make a definition: ar chhitan ki smadhi avst hai.1211 I have not read this anywhere. This [paperweight, paper] is not lively thing, but it is. Want to know more about time. If I know more about time then I can live like anything, because only one line of time, before death/after death. I want to know that! I want to know that, this concept comes to me by birth of a baby. It is a chemical reaction only comes lively thing. What’s going on between that thing, chemical reaction, what comes inside to make lively. My father wrote a book on immortality, to become immortal by alchemy. Wrote a lot of books/manuscripts. [Worked] with mercury, used medicines on himself, damaged his kidneys and passed away. Otherwise he had astrological knowledge of people’s future/past.1212 This informant wants to continue to return lifetime after lifetime to continue to learn about

“time,” seemingly to escape a singular and linear timeline, as well as the workings of the animating life-force in beings. Because they neither want to break out of the cycle of birth, death and rebirth, a soteriological goal common to some of the Indic religious traditions but each with their own nuances, nor do they want to go to non-human realms after death, they feel that religion therefore will not impact their EOL decisions. Lastly, a Buddhist Tibetan HCP in

Dharamsala commented specifically on EOL decision making saying that “religion won’t make the decision. Will help prepare their mental status, calm them.”1213

Four informants, or nine percent (9%), gave answers that were split differently between

1209 J-120414-J-013 1210 The Hindi rendering of the Sanskrit moksha, meaning “liberation.” 1211 which can translate from Hindi to mean “there are many things to look for.” 1212 J-122614-H-022 1213 DSL-042315-BRN-48

456 healthcare and EOL decision making. Two Hindus in Jaipur had thoughts to share, but with reversed positions. The first, on religion affecting healthcare decision making, said

Yes, in our culture. One example: office in which I am working, he is suffering from paralysis. One day paralyzed, hand not working. Spiritual/religious person, when to one temple not in Jaipur, the day he went he paralysis became lesser and lesser. Regularly going, not able to move hand when paralysis, now can move. Maybe religion affects this.1214 But on EOL decision making they said “maybe or may not be. If I am going to die I pray, give me a good/valuable life in next birth, and please give me peace to my spirit - meri atma ko shanti, atma spirit.”1215 Oppositely, the other informant denied the influence of religion on healthcare decision making, but at the end of life said “yes, every religion emphasizing death.

Part of life-cycle, totally unavoidable. Part of our religion only. God has given life, now death is there.”1216 Both speak of decision making around illness and dying not in a medical context, but rather with regard to religious activities such as temple visits for healing, prayer aimed at inner peace and an improved rebirth, and acceptance of death. A Muslim in Jaipur thinks that religion only “slightly” affects healthcare decision making, but when “dying, yes, think I am following

Islam rules and regulation, have to follow at death also. Complete faith to Allah and Islam, make good judgment after death.”1217 A Buddhist Tibetan HCP in Dharamsala who earlier stated that religion does not impact EOL decision making, at another part of the interview said that religion also does not influence healthcare decision making but then flipped their position by saying

“yes” religion affects decision making “at end of life. If I see this things he might feel better and be relieved and more calmer for death.”1218 Informants from three different religious traditions all, fascinatingly, gave split answers but without reference to medical decisions, or any decision

1214 J-121014-H-015 1215 J-121014-H-015 1216 J-121514-H-017 1217 J-121314-M-016 1218 DSL-042315-BRN-48

457 making at all for that matter. Instead, they each offered ways in which religious practice or even mere exposure can be helpful to the person who is sick or dying.

The last eight informants who gave additional verbal answers on the influence of religion on healthcare and EOL decision making, or seventeen percent (17%), were either unsure or thought that it would be context dependent. A physician of traditional medicine in Jaipur said that religion “sometimes affects patient. For example, orthodox, nothing but ayurved. Thinking will dominate. Should be flexible.”1219 Two Hindus in Jaipur spoke up, with one saying religion affects both healthcare and EOL decision making “sometimes”1220 and another addressing EOL decision making by saying that “some people think with life-support there is no life, let body take its own course. Regarding life-support, need to be rational. Not prepared for death of young person.”1221 The second informant allows for various views on life-support but supports a rational approach, perhaps placing this in opposition to emotional responses such as those which might arise when a young person is dying as it is atypical and untimely. A Jain in Delhi said that religion affects healthcare decision making “to an extent. If healthcare demands me to eat something that my religion doesn’t approve of, I would not like to.”1222 At another point in the interview they said that “maybe unconsciously because religion has entered me as part of culture and difficult to separate.”1223 On EOL decision making, they “can’t say. Not sure what mental state at that time.”1224 Again at another point in the interview they said that the “emotional and psychological nature would influence. Religion part of culture when alert and ok, may not work

1219 J-112614-JND-007. Of note is that this informant answered on non-HCPs when asked about HCPs, and on HCPs when asked about non-HCPs. Despite this, I have placed their answers in the sections with the appropriate categories. Due to the flipped contexts, it could be that the mention here of flexibility might be referring to the HCP, but this is not clear. 1220 J-120914-HNA-014 1221 J-122414-H-020 1222 D-020415-J-026 1223 D-020415-J-026 1224 D-020415-J-026

458 when so unwell.”1225 For this informant, religion might be influential in accepting or refusing medical advice, whether it is an explicit or implicit influence, but cognitive interferences at the end of life might prevent this influence. Lastly, three Buddhist Tibetans in Dharamsala weighed in on the subject such as one who said whether religion influences decision making “depend on how serious,”1226 and a physician who said that for “elderly more evident, younger the influence is less”1227 in healthcare decision making. The personal physician for His Holiness the Dalai

Lama, Dr. Tseten Dorji Sadutshang, said that religion affects decision making only

if religion is a way of life. If not then won’t! More selfless, more concerned, caring, compassionate, all those qualities will start showing up. Patient right now got a brain tumour who will probably not good relation with son because both alcoholic. No caregiver but son, to try and motivate son to care on father depends on environment, otherwise son won’t even care about father… Of course, different for patient for him/her they know about to die. All about what going to happen to me and after life, and family after, those concerns there. Depends on belief and understanding, closeness with family, multiple factors.1228

In Dr. Sadutshang’s estimation, the influence of religion on healthcare and EOL decision making depends on the level of integration of religion into a person’s life. However, for the dying person there are common concerns that are all approached in ways dependent on the person’s unique context.

From among the forty-six informants that gave answers, fifty-four percent (54%) felt that religion influences people’s healthcare and EOL decision making and twenty-two percent (22%) felt there is no such influence. Seventeen percent (17%) were unsure or thought that it depends on the context, and nine percent (9%) had split answers between healthcare and EOL decision making. Of the split answers, only one thought that religion

1225 D-020415-J-026 1226 DSL-040615-B-40 1227 DSL-041815-BMD-45 1228 DSL-040715-BMD-41

459 impacts healthcare decision making, two did not and one was unsure. On EOL decision making, three thought that religion does have influence, and another was unsure.

The Family

Two questionnaire questions asked informants if religion affects the decision making of family members of patients, with five informants adding extra details. The first question focused on healthcare decision making and three informants said more, including a Hindu in Delhi who said “commitment to be good and happy always in play. Fundamentalistic1229 ideas/beliefs. From his side, religious position doesn’t matter. Main thing is God, happy et cetera. Influenced to the extent religion ‘soaked into you.’”1230 From this informant’s perspective, the degree to which certain positive qualities and principles, which may or may not come from a religious orientation proper, are imbued in the person will determine their influence. Rather than being helpful, a

Buddhist Tibetan doctorate holder in Dharamsala said conversely that family members can have

“sometimes too much blind faith” which “blocks doing right thing at right time.”1231 Although from an answer on HCPs, a Jain physician thinks similarly in that “family allow religion to encroach on technical aspects of medicine.”1232 Another Buddhist Tibetan in Dharamsala, a

HCP, said that they “advise the attendant to prepare now he’s end stage. Make as calm as possible, don’t make disturbed.”1233 This doesn’t speak to what we might call a soft influence of religion, or internally driven, but rather a hard influence, or external, of the healthcare team on family members likely on the basis of commonly held Buddhist ideas around the impact of the moments leading up to death on the process of dying and transmigrating.

1229 Despite the term chosen by the informant, in context I read this as meaning “fundamental” and not “fundamentalist.” 1230 ND-110814-H-001 1231 DSL-032615-BPHD-35 1232 J-111914-JMDNA-005 1233 DSL-042315-BRN-48

460

The second question focused on EOL decision making and only two informants offered more, such as a Jain doctorate holder in Delhi who said that “love and affection can override religious beliefs. If have money, see death as evitable1234.”1235 From the idea that strong emotions can be more influential than religious ideology we can presume that this can either help or hinder

EOL decision making. For example, deep love can lead someone to not want their loved-one’s death to be prolonged, whereas strong attachment can lead a family member to not want to stop active medical management for fear of losing their loved-one. The thought that the wealthy might see death as avoidable is an interesting one, and having such resources and unrealistic expectations can be additional factors that could negatively impact EOL decision making. For example, if the full extent of medical heroics are affordable and seen as death-defying, they could be chosen despite the burdens outweighing the benefits. To be sure, in my clinical ethics practice heroics are very often chosen by family-member substitute decision makers from denying grim prognoses of imminent death. Another Jain, this one in Jaipur, said this:

Clarity in my mind about my own death, ready to die anytime. No fear, no ambiguity, clear concept that soul is immortal and body will die. What I want - should be conscious, don’t want an unconscious death. Earlier is better about info about my death so I can prepare myself and detach myself from all mundane things. Incident for my life: got an accident, in two-wheeler, accident in highway, slid on the road, high-speed, twenty to thirty feet, maybe twenty to thirty seconds. There was no danger but skin up arm [friction burn], very painful. I got up, first thing came to mind was about own consciousness, thought “if I die during the sliding.” Unconscious in terms of spirituality/about soul. If I die at that time, then unconscious death. On that day I again started preparing myself, now prepared for five minutes death.1236

This answer seems to have nothing to do with how religion affects family members in their EOL decision making but I include it for two reasons. The first is that it tells us more about one Jain’s experience in relation to preparing for death, especially that which is sudden and unexpected. I

1234 This term for “avoidable” is not as commonly used in North American English as its opposite “inevitable,” but as with some other idiosyncracies in English as spoken by Indians, this may be from British English. 1235 ND-111014-JPHD-002 1236 J-122514-J-021

461 also include it because it seems to be in keeping with a noticeable pattern of informants deeply personalizing any question that has religion added to it, even if it steers away from the point that

I am trying to get at as an ethnographer.

With so few answers on the topic of the influence of religion on the healthcare and

EOL decision making of family-members, it is difficult to generate statistics or get a good sense of where the study cohorts land on the issue. We can say, though, that some feel that religion can actually have a negative impact on decision making where strongly held beliefs can override medical findings and recommendations. Also, some informants feel that the personal qualities and concerns of an individual that might influence decision making, such as the presence of warm emotions or being motivated by wealth, can be distinct from religion.

Healthcare Professionals

Forty-four informants (n=44) informants had more to say about religion affecting the decision making of HCPs. In the open interview, the contexts of healthcare and EOL were asked together, whereas in the questionnaire they were asked in separate questions.

Seven informants, or sixteen percent (16%), thought that religion does affect the decision making of HCPs. A Jain physician in Jaipur wondered about the “patient perspective” and thinks there can be a “negative influence of religion on decision making. Important to give moral, spiritual support. Stops there.”1237 A Jain doctorate holder in Jaipur said that in EOL care religion has “more influence” on HCPs.1238 A Christian in Cochin said this:

Healthcare basic system consists of members. We do not know what they practice individually, decorum as a team. For example, institution for learning for exam. Individually nothing wrong to carry material to use, but policy is nobody can carry material home. As an institution, certain policies. Similarly, healthcare professionals as a

1237 J-111914-JMDNA-005 1238 J-112114-JPHDABD-006

462

team together have policies dictated by healthcare system, mandatorily asked to execute.1239

This informant appears to be saying that certain aspects of healthcare practice are directed by policy at both the Indian healthcare macro- and meso-levels, from the healthcare system down to institutional policy. They lump HCPs together but I would add mention of profession-specific regulations to the Indian healthcare macro-level. Despite this, at the Indian healthcare micro- level of teams and individual professionals, this informant seems to suggest that there might be unique approaches to healthcare, which might include the affects of religion on medical decision making. The remaining four informants who see religion influencing HCPs in their decision making were Buddhist Tibetans in Dharamsala, such as a doctorate-holder who addressed the influence of religion specifically on healthcare decision making:

For example…two days back, son got a boil. When to hospital doctor said to cut, called Rinpoche. Right place to do, so many nerves. Made decision through divination. I overruled doctor’s decision. [Rinpoche] said “good to treat there, but should take care of son for three days. Don’t take bath or shower,” advised. Went and said “ok.” If said “no, go to another hospital,” I would. How I make decisions.1240 This informant takes the divinations of their religious teacher as having more weight than even the treating physician. Another informant, a physician, said it “makes easier to decide based on patient behaves and thinks about process of dying.”1241 They don’t mention religion specifically, but are guided in their decision making by both the patient’s behaviour and their views on dying, which might well include religious conceptions. Another physician, when asked if religion impacts HCP decision making, said that they “think so” since “religion helps us give better care to people. We believe doing gives us something good - dge ba rtsa ba.1242 Noble profession.

1239 C-022815-C-33 1240 DSL-032615-BPHD-35 1241 DSL-040115-BMD-37

1242 Tibetan Wylie: dge ba rsta ba, which translates as “roots of virtue.”

463

Work, plus do something good for patient and self.”1243 Not only do they feel that religion improves healthcare delivery at their hospital, but they also frame healthcare work as vocational in nature and one that benefits both the patient and the HCP. Through caring for patients, HCPs themselves accumulate good karma. Another physician at Delek Hospital, although not answering the question of religion’s influence on HCPs, gives more context to daily religious preparations done by staff before seeing patients:

During early morning rounds we do one minutes silence. I used to recite…stanza of Medicine Buddha1244 then mantra, then at end of mantra, stanza by Shantideva.1245 Medicine Buddha: thugs che kun la mnyam pa'i bcom ldan 'das, mtshan tsam thos pa'i nyan 'gro'i sdug bsngal sel, dug sum nad sel sangs rgyas sman gyi bla, bai Du rya 'od la phyag 'tshal lo.1246 (motivate), mantra,1247 then ngo wa (send it out).1248 Shantideva: sems can nad pa ji snyed pa, myur du nad les thar gyur cig, ‘dro ba’i nad ni ma lus pa, rtag tu

1243 DSL-040815-BMD-42 1244 Bhaishajyaguru in Sanskrit. As made obvious by the name, this is a Buddha with a focus on healing who is blue in colour and holds a bowl full of medicinal herbs in the left hand (which is in the meditative equipoise gesture), and the stem of a medicinal plant in the right hand. 1245 An eighth-century Indian Buddhist scholar-monk whose name literally means “Peaceful Deity” and known for composing the very influential Northern School (a.k.a Mahayana) text “A Guide to the Bodhisattva’s Way of Life,” quoted next by this informant. 1246 I would translate from the Tibetan as this: “To the One-thus-gone (Tathagata) whose compassion is equal for everyone, just hearing the name of whom eliminates the suffering of wanderers, curing illness and the three [mental] poisons, I pay homage to the Supreme Healer, Light of Lapis-Lazuli.” 1247 The mantra of Medicine Buddha is tayatha om bekandze bekandze maha bekandze (bekandze) radza samudgate soha and is explained by Lama Zopa Rinpoche: “Tayatha – means “like this”. Om – is composed of the three pure sounds A U and MA, which signifies one’s own body, speech and mind that get transformed into the vajra holy body, speech and mind. Then bekandze bekandze -“eliminating pain, eliminating pain.” What eliminates pain is medicine. This pain is not ordinary pain – even animals do not want to experience that. The first eliminating pain is true suffering, the second is the true cause of suffering. The medicine that eliminates pain is first the graduated path of the lower capable being, and second the graduated path of the middle capable being. Then maha bekandze -“the great eliminating pain” is the graduated path of the higher capable being, which eliminates the subtle defilements. So bekandze bekandze maha bekandze contains the whole path to enlightenment, the ultimate medicine. Radza – is king. Samudgate – (ocean of goodness) Soha – to establish the foundation in the heart, the blessing, the devotion from which the realization comes.” http://landofmedicinebuddha.org/about-medicine-buddha/meaning-of-mantra-and-praise/

1248 bsngo ba or “dedication” which involves sending the merit out to others for their benefit.

464

‘byung ba med par shog.1249 Whenever you face suffering people… May he release easily from suffering. In samsara,1250 please remove all disease, all disease and suffering.1251 Together and individually, HCPs at Delek Hospital set their motivations before starting each shift by way of reciting verses and mantras which help generate the compassionate wish for everyone to have perfect health. The team also engages in a period of silence during which some staff likely practice a form of placement meditation1252 common in Tibetan Buddhism which holds to a singular object such as the breath and which is meant to stabilize the mind. This daily mental and emotional preparation fleshes out the comments of the previous informant who stated that religion improves patient care and benefits both patients and their providers with an example of how this is practically incorporated into healthcare delivery. My wife, a Nurse who spent some time teaching staff at Delek, and myself both find this team-based daily preparation most impressive. To be sure, based on this and seeing how Indian merchants also commonly prepare for their work-day by starting with prayers and offerings to their shrines, I have incorporated some time in my private office to do the same before each shift. I find that it helps keep the mind in check from fixating on livelihood, wage-earning and work output. It can both trigger and strengthen the primary intention which led me into healthcare: that of being of service to the sick and dying, their loved-ones and all those fellow HCPs who care for them. Another physician, the last to think that religion does influence decision making, said this:

Yes, we similar to cancer stomach, tell them to go for surgery. Duty to convince them, but sometimes divination – chemo, radiation - I will push hard if not religious to go, if a little religious, maybe. If we are not sure of prognosis then can do divination, if says not to go then good for both of us… Not sure about how they feel about our religious belief,

1249 This is from verse twenty-one of chapter ten (v. 21, ch. 10) which contains dedications that end the text. The informant gave a loose translation, and I would translate it as this: “All sick beings, may they quickly and thoroughly become free from disease. Without exception, may there be no disease of wanderers ever, and may it never arise again.” 1250 Sanskrit for the cycle of existence. 1251 DSL-041815-BMD-45 1252 shi gnas in Tibetan, śamatha in Sanskrit, meaning “calm abiding.”

465

when they come they think we will be more genuine or compassionate as Buddhists rather than other hospitals.1253

First this physician describes how they have a different approach to medical decision making for religious and non-religious patients with advanced illness, giving stronger encouragement for interventions to non-religious patients. Rather than seeing their duty as that of fully informing the patient so they can come to a decision for themselves, they feel that their duty is to change a patient’s mind when they do not see the importance of pursuing treatments that are clinically indicated, even those that are quite invasive or toxic. Religious patients, as we heard from another informant above, might engage in divination to assist their decision making, especially if the prognosis is unclear. It is not entirely clear to me what they mean by it being “good for both of us” if the divination “says not to go” for more aggressive treatment. It could mean that they might not actually think aggressive measures are in their best interests but feel compelled to offer it, so a divination result which indicates not to pursue it leaves them off the hook. It could also simply mean that a divination result helps bring the situation to resolution. Next they discuss the religiosity of HCPs and how patients might view this, thinking that patients might have higher expectations of personal qualities from Buddhist HCPs in contrast to others.

Twenty informants, forty-five percent (45%) of informants who had more to say on the topic thought that religion does not affect the healthcare and EOL decision making of HCPs with nine simply saying “no.”1254 Speaking on healthcare decision making, a Hindu informant in

Delhi said “selfishness, commitment to do good, no issue of religion”1255 and thus holding that one’s motivation is unaffected by religion. Three other Hindus, all in Jaipur, added some

1253 DSL-041815-BMD-45 1254 J-120114-H-010, J-120414-H-012, J-111714-M-004, J-122614-H-022, J-123014-H-023, D-010615-S-024, D- 020515-H-027, DSL-042015-S-46, ND-042815-S-49 1255 ND-110814-H-001

466 thoughts such as one who said they “don’t think so, but combination of reason. Decision a combination but weightage goes to doctor, what they want to do. They can convince people that this is best thing for person going to die.”1256 Although this informant gives no reasoning behind their position that religion has no effect on HCP decision making, this is, interestingly, the second informant who mentioned physicians “convincing” their patients to do what they think is best for them, one an HCP and this one a non-HCP. Another said “no, not affecting their decision making because medical systems are more based on scientific research. Religions normally believe/faith. Doctors simply follow guidelines provided by medical sciences.” 1257 This informant thinks that medicine and religion are segregated based on what they think of as their respective bases, be it science or faith. Another is in agreement with this distinction:

No, these decisions are rational things. If healthcare professional making decision, it should be rational rather than value-laden. Values are quite different thing. Backbone of medical science is science not any belief or value system. Should be some ethics because we are human beings - as a human being we have certain criteria of things to do and not to do. Cannot put person in grief if unproductive, cannot zero him as useless…isolate if no more useful… Humanity as a religion - nobody in any place can say this can be done. Ethics related to human being, not religion. Those are not values, certain belief. If Hindu doctor I am a doctor first. Clash can be there: think “put off life-support” and I’m Hindu, they are Muslim - can be some differences of opinion. This country has a lot of cultural sub-systems, not a developed nation/uniform nation, different colours. Have to juggle a lot between these people, dribble a lot like in football.1258

This informant goes further than the one previous, beyond arguing that healthcare and religion is a matter only of science versus faith. They also propose that healthcare should even be free from values, and that ethics should be secular in nature, perhaps especially in a country with as much diversity as India. One major concern they have in the ethics of a society has to do with equality in the treatment of people, particularly in not basing the worth of a person on their productivity

1256 J-120914-HNA-014 1257 J-121514-H-017 1258 J-122414-H-020

467 within that society. A Jain in Jaipur said that with regard to religion, HCPs “don’t think or should affect them, have aim in front of them. Whatever religion they have don’t think it should. Don’t think so.”1259 A Muslim in Jaipur stated that HCPs do not consider religion in healthcare decisions, and in EOL care “they are not thinking about that.”1260 In very similar opinions of two

Christians in Cochin, for healthcare and EOL contexts one said “religion has its own place”1261 and another thinks that “religion does not affect anyone’s decisions.”1262A Sikh in Dharamsala said “No, here Hindu, Muslim, Christian live together, no separation, no division. No discrimination here!”1263 Their answer leads me to believe that they understood the question as asking whether religion can cause HCPs to act unfairly towards patients from different religious backgrounds. A Buddhist Tibetan in Dharamsala thought that the possibility of religion influencing healthcare decision making is “silly” and

shouldn’t. Ability from…medicine what is necessary. If patient make decisions, up to them. Otherwise doctor’s duty practical matter. Doctor good practitioner, I think …doctors mentally very strong. If something like bleeding, the love strong. Something to do with individual character. If person mentally firm then important, not scared, ability to have correct judgment.”1264 This informant focuses on the qualities a doctor should have, such as medical objectivity, mental strength, caring and confidence, all of which they see as being unrelated to religion.

Five informants, or eleven percent (11%), had split answers between healthcare and EOL decision making. A Hindu in Jaipur stated that

actually medical science will not trust religion, but in some cases medical science cannot resolve the disease. At that time religion belief will resolve the sickness. No tablet/medicine for paralysis, he went to religious place. Doctor told him cannot work by hand, and by going there his hand is working. Medical science no [place] in religion.

1259 J-120414-J-013 1260 J-120214-M-011 1261 C-021815-C-31 1262 C[E]-022315-JW-32 1263 DSL-041715-S-44 1264 DSL-040615-B-40

468

Sometimes miracle happens, believes in religion.1265

Giving an anecdote of someone who had a physical ailment recover after visiting a pilgrimage spot, this informant feels that the spheres of medicine and religion mutually exclude each other, at least in healthcare. However, for the end of life, they also said that “definitely” religion affects

HCPs: “Also pray to God that patient will not die, or if die then Bhagawan iski atma ko shanti.1266”1267 Two Christians in Cochin also had split answers with one who similarly felt that in healthcare decision making there is no influence of religion on HCPs but there exists such influence in EOL contexts.1268 The second thought that “maybe, to some extent” religion has an impact on HCP healthcare decision making, but for the end-of-life they said “yes, could be some that wouldn’t want to end someone’s life”1269 indicating that religion could lead some HCPs to object to hastening death. Conversely, a Jain physician in Jaipur said that for HCPs giving EOL care religion has no impact on their decision making but that in healthcare decision making, there is “certainly” some influence due to “feeling/gravity of compassion. Belief you have. Value of life and non-violence.”1270 One final Jain informant in Jaipur was somewhat unsure in their answers saying religion affects the healthcare decision making of HCPs “to some extent” but for

EOL care said “I don’t know.”1271

Twelve informants, or twenty-seven percent (27%), were either unsure or thought that the influence of religion on HCP decision making in contingent on other factors. Four Jains added their thoughts such as a doctorate-holder in Jaipur who said that patients “might try but do not want, their religious views should not influence my decisions. Different philosophies/background

1265 J-121014-H-015 1266 which can be translated from Hindi as “God bless” but more literally means “Lord, to him [grant] peace of the soul.” 1267 J-121014-H-015 1268 C-021615-CNA-30 1269 C-021015-C-029 1270 J-121914-JMD-019 1271 J-122514-J-021

469 strong influence.”1272 This informant understands the question as asking if the religion of their patients would affect them as an HCP in their decision making. A physician of traditional medicine, also in Jaipur, said that religion “does not affect decisions. No religious advice in treatment. For example, religion Hindu, but Christian can treat me if good doctor. Religion is no impediment to treatment.” 1273 This traditional medical informant thinks that not only do physicians not add any religious content to their recommendations to patients, but also that a physician of any religious background can treat someone from any religious background because it is the quality of their practice that matters most. The third Jain, in Delhi, said “no,” HCPs

“primarily go on medical field. Some people…awareness of religion always there. Doctor know person is a Jain and should be given this and not this, Muslim advise this and not this.”1274

Although most took the question to mean how HCPs own religion may or may not affect their approach to decision making, this informant instead thought of how the physician might tailor their approach with a patient based on the patient’s religious disposition. The fourth Jain, also in

Delhi, said that for religion affecting HCP healthcare decision making they “don’t think so” but in EOL care said that they “can’t say. Depends on the how religious or irreligious, and what he would advise you depends on temperament.”1275 Although unsure, this informant thinks that the degree of religiosity of HCPs delivering EOL care might impact their recommendations to patients. Two Muslims spoke up, including one in Jaipur who thought that HCPs are impacted by religion

sometimes, depends on the situation. For example, son very sick, in oxygen room, one nurse on that doctor’s team, she know mulvi (Islam expert). Suggests [to] patient’s

1272 J-112114-JPHDABD-006 1273 J-112614-JND-007. Again of note is that this informant answered on non-HCPs when asked about HCPs, and on HCPs when asked about non-HCPs. Despite this, I have placed their answers in the sections with the appropriate categories. 1274 J-112614-J-008 1275 D-020415-J-026

470

grandfather, “we are taking care, he will die within a week. So, try, if mulvi comes, and read Qu’ran and breathing (blow) on them maybe it will help. So, just try.” Went to masjid1276 and bring, and told to Muslim person, and went to hospital and reading Qu’ran and breathing for three days. After two days mulvi told grandfather to bring out from ICU, with discussion of doctor. Doctor asked “why? He will die. Do you want him to die right now? Why take out from oxygen room?” “I am seeing something in this position, I am not feeling well here. If patient go to home I will freely read Qu’ran and breathing again and again.” Two day in oxygen room, one day in own room, patient could start eating food, sitting up in bed, got better and didn’t die. Thirty-two to thirty-three years old!! Jeweller family.1277

In this anecdote, a nurse suggested to a family member of a patient with a grim prognosis to read the principal Islamic scripture and then breathe on the patient. The family did so and, in addition, brought the patient home on the advice of the mulvi but against the doctor’s medical advice, and the outcome was impressively good. The nurse was not just merely influenced by religion in their approach to the patient’s case, but also recommended a religious intervention seemingly as a last resort. On whether religion affects the EOL decision making of HCPs the same informant said “sometimes, sometimes not. Depends on doctor.”1278 The other Muslim, this one in Cochin, said that on the topic of HCPs being influenced by religion in their decision making it is “neither yes nor no, somehow and sometimes. Not exactly.”1279 Five Buddhist Tibetans in Dharamsala had more to say on whether religion influences HCPs in their decision making such as one who said it is “sometimes” the case in healthcare, and that “it may” in EOL care.1280 Another, on healthcare decision making, said “maybe, because doctors who do not believe in religion can treat patient kindly. Depends on individual.”1281 When this informant thinks of the ways in which religion could influence an HCP, they focus on behavior towards others. Since non-adherents can treat others well, and by the same logic adherents can treat others poorly, religion may or may

1276 An Islamic place of worship. 1277 J-121314-M-016 1278 J-121314-M-016 1279 C-020915-M-028 1280 DSL-032515-B-34 1281 DSL-040415-B-39

471 not be a factor in determining behavior. In EOL care, this same informant feels that “yes,” religion can influence HCP decision making “if they are true religious person.”1282 A doctorate- holder, on EOL decision making, said that whether religion influences HCP decision making

“depends on motivation. Doesn’t matter. Companies in West, complex. Many doctors don’t have religion. In Tibetan society, most Buddhist. Some volunteers come, not Buddhist.”1283 Similar to the previous informant, this informant seems to be saying that motivation is what is most important and does not require religion. The mention of Western companies might be a reference to secular healthcare organizations, which would have many non-adherent physicians who provide high quality healthcare. Another also mentioned the possibility of being a good HCP without needing religion:

Depend on person. Good doctor or nurse, if they form believe it makes them strengthened. More love, more patience for pain and horrible things they do to you. Well equipped, not just machines or tools. Gift from these practitioners, gift for them. Some people don’t need to believe, ethically very compassionate, no specific.1284 Although suggesting that how an HCP treats others is not dependent on religion, they also recognize that adhering to a religion can allow the HCP develop themselves as a provider such as by helping increase warm feelings and the ability to endure the various hardships of healthcare delivery. They particularly point out the challenge of putting patients through hardship by way of the very means intended to benefit them. Another said this:

To be very honest the doctors study science so they don’t believe in religion. Depends, some may believe or not. Most doctors study science, I don’t think too much into religion. Very practical. I think better if doctor study religion as well, simultaneous treat patient! I remember very good word: “care more for the individual patient than for the special features of the disease.1285 The kindly word, the cheerful greeting, the sympathetic look. These the patient understands.” William Osler.1286

1282 DSL-040415-B-39 1283 DSL-032615-BPHD-35 1284 DSL-040615-B-40 1285 The original quote has the words “Put yourself in his place…” between these sentences. 1286 DSL-032715-B-36

472

Impressively deploying some humanistic words verbatim from the renowned Canadian physician

Sir William Osler from the late nineteenth and early twentieth centuries, this informant again points to a divide between science and religion. Despite this, they recommend that doctors study religion to add another layer to their medical practice although it is unclear if they mean for the purposes of incorporating religion into their own lives or as a way to better relate to patient adherents. Lastly, an HCP said “no, they are professionals” but that “in government hospitals it is otherwise...they do what they shouldn’t do, even operations when not needed… In private, purely professionals.”1287 On EOL decision making they said “no!” and laughed saying that

“they see many case daily… Not talking about decision on religion but helping others. More important. When patient dying make audio recording His Holiness the Dalai Lama teachings, make mentally calm, concentrate this way, mind get divert sometimes.”1288 In healthcare, this

HCP thinks that HCPs in private hospitals keep medicine free from the influence of religion, but that this might not be the case in government hospitals. As with several other informants, this

HCP makes it clear that, in EOL care, being of benefit is the goal and distinct from religion.

Despite this, they then share some of the ways in which staff might help their dying Buddhist patients through exposure to religious discourses to settle their mind and possibly distract from the difficulties of the dying process.

From among the forty-four informants, forty-five percent (45%) felt that religion does not influence HCPs in healthcare and EOL decision making. Next, twenty-seven percent (27%) were unsure or thought that such influence would depend on the context.

Only sixteen percent (16%) thought that religion does influence HCPs in their decision making, and eleven percent (11%) had split answers between healthcare and EOL decision

1287 DSL-042315-BRN-48 1288 DSL-042315-BRN-48

473 making. From among the five informants with split answers, only one thought that religion impacts healthcare decision making, and with two each for there being no influence or being unsure. Three informants thought that religion influences EOL decision making, with one each thinking there is no influence or being unsure.

Conclusion

There is much to sum up in this appendix so I endeavor to give only the major findings.

On the process of healthcare decision making, the location and privacy of discussions generated the most interest with an equal amount of those who think there is privacy and those that think there is little privacy. The next most popular theme had to do contacting family when there is new medical information to share. Some participants who discussed family contact gave suggestions as to the order of contacts when sharing new healthcare information, with almost all indicating the family should be first point of contact when there is new information to share. On the players in healthcare decision making, context dependence determining the players was the most popular approach, followed by equal interest in collaboration between multiple players and

HCPs alone making healthcare decisions. The questionnaire statistics differed from what was generated from the verbal answers, with the family alone, HCPs alone or the family with the healthcare team, being preferred over patients alone and collaboration between all players which were less preferred.

On the process of EOL decision making there were few verbal answers but some themes were still generated such as contacting family first, the importance of privacy, increased HCP involvement if the patient is alone, collaboration with HCP leadership and using a personalized approach to care. On EOL decision making players, collaboration was the most popular approach, followed by physicians making EOL decisions and then family and physician making

474

EOL decisions together. The questionnaire statistics showed alignment with the verbal answers since the most popular answer was also collaboration. Personal preferences on EOL decision makers saw different answers than the opinions on EOL decision makers in general, with autonomous decision making as the most preferred, followed equally by EOL decisions being done together with family, the doctor and the healthcare team making decisions by proxy and collaboration between the patient, family and HCPs.

When discussing EOL advance care planning, it became clear that few had a clear grasp on documents which contain advance care directives, with most only having tangential associations with it. Most when asked about power of attorney for personal care documents which name a designate for decision making, if they were to become unable, shared who their own representatives were and how they came to designate them, or generally shared who would typically be representatives for people. The statistics showed that few to no informants possess or see in their practice either advance care directives or POA appointment documents, but there was a close split between those who had heard of such documents and those who had not.

Among non-HCPs, POA documents are more known than advance care directive documents.

This might change in the not to distant future because of plans for the Supreme Court of India soon exploring the potential for advance directives.

Under the topic of EOL social support, the most popular question was whether informants while dying would have anyone to stay with them round the clock. Statistically, most noteworthy was that HCPs are less sure if their patients would have people to care and stay with them when dying, whereas non-HCPs feel that they would. All agreed that children, spouses or other family take care of the dying.

EOL care preferences was likely the topic which broached the most sensitive and

475 personal issues, and informants were most intrigued by the possibility of getting emergency care when dying, ventilation, and dying at home versus hospital respectively. The statistics showed that informants overall thought that comfort supersedes length of life and prefer being at home while dying, whereas they do not think that life-support and being medically maintained after brain-death would be worthwhile for the sake of merely lengthening life.

As a lead up to discussing the possible influences of religion on healthcare and EOL decision making, informants spoke to their own religiosity with most identifying as either very religious or somewhat religious, and most indicating they attend a place or worship either daily or rarely or never, in equal numbers. Almost half said they engage in personal religious practice daily, and a quarter reporting practicing more than once a day.

More than half of informants felt that religion does influence people’s healthcare and

EOL decision making in general. There were too few answers on the topic of the influence of religion on the healthcare and EOL decision making of family-members, but some felt that religion can actually have a negative impact on decision making by the family of patients where strongly held beliefs can override medical findings and recommendations. Also, some informants feel that the personal qualities and concerns of an individual that might influence decision making can be distinct from religion. Almost half of informants felt that religion does not influence HCPs in healthcare and EOL decision making. The statistics were in alignment with verbal answers on healthcare decision making since the questionnaire results agreed that religion does influence people’s healthcare and EOL decision making. There was dissonance, however, with regard to HCPs since in contrast to the verbal answers, the questionnaire answers showed informants indicating that HCPs are influenced by religion in healthcare decision making and were ambiguous on religion impacting HCP EOL decision making.

476

One of the most fascinating findings to come out of the analysis is an interpretive one, in that there was an enormous amount of variety in how informants understood what was meant by

“decision making,” and it being “influenced by religion.” Many times, informants discussed aspects of care that might not typically be included under “decision making” proper. Decisions related to treatments or placement after discharge and so on are so often emphasized in the clinical context, medical and bioethics literature as well as legislation. However, informants in this study spent a great deal of time discussing such things as the quality of care, creating an environment conducive to care goals, lifestyle, and emotional states to name but a few of their concerns. There also were some who gave answers that were related but which did not exactly address the question, including those who seemed to deeply personalize questions related at all to religion. These tendencies are important and informative, in my view, along with what was understood by “influenced by religion,” which was also quite variable. Some informants took this to mean such things as: how the person treats others; what actions they would conscientiously object to; religious interventions; motivation; positive emotions or concern towards patients; ability to endure difficulties (such as with patience or forbearance); reaping moral or karmic benefit; how to approach patients of different religious dispositions; how religion excludes medical science; discrimination or acceptance based on religion; requesting divine intercession in curing patients; the influence of patients’ religious views on HCPs; the presence or absence of religious advice within medical advice; HCPs’ quality distinct from adherence to certain religion; and the ways in which religious practice, or even mere exposure, can be helpful to the person who is sick or dying. Along with being unbound to any strict and enumerated categories given to them in questions, this rich interpretation of the influence of

477 religion is another example of how the informants in this study share more of themselves and their perspectives by the flexible and creative way they answered questions.

478

Appendix D: Defining Key Terms: Informant Perspectives Health, Illness and their causes; Death; Religion; Healthcare; and End-of-life care

This appendix will explore informant perspectives on the definitions of key terms that are highly relevant to the study such as health, illness, death, religion, healthcare and end-of-life care. In addition, informant conceptions on the causes of health and illness will be included.

HCPs were asked to also comment on how they think their patients would define such terms.

This will be a helpful companio when entering into the thematically organized chapters so the reader has a sense of what is understood by the informants in this study when questions using these terms are deployed. Although some chose to not answer some questions, and some informants only engaged with the questionnaire and not the open interview in which the questions were contained, every informant that had an open interview from every tradition in every field-site location was asked to define these terms. Although there are some general tendencies towards certain concepts when defining the terms, such as health having to do with functionality in activities of daily living, there is also variety in views within and between groups. Coding such concepts resulted in some statistical data which are included in this section.1289 Exemplary quotes that align with such conceptual tendencies will also be given, as well as some views that are unique outliers.

Health

When asked to define “health” during the open part of the interviews (n=42), a few informants gave traditional terms. Both Hindus and Jains mentioned an Indic word for health1290, svastha1291 in Sanskrit and svasth in Hindi. One Hindu elaborated on the term:

1289 Percentages have been rounded up and although informants gave multiple answers on each topic question, no answers were coded twice under overlapping categories. 1290 ND-110814-H-001, J-112714-J-009, D-011015-J-025

479

Swastha: “swa” as self, “tha” still/stabilized. Established in your own self. How? Self is that which doesn’t change with time. Changeless around which change takes place. Relativity - body changing, not self. Mind/intellect changing, not self. Identified with “life,” then in swasth.1292

A Buddhist Tibetan deployed the term tro ten1293 for health and defined it as to “rely on suitable thing.”1294 One translator unpacks this to mean “food, activities etc. good for the body, hygiene, health [care],”1295 while another Tibetan explanation of the term includes proper drinks along with food, and gives lifestyle or conduct instead of activities.1296

Almost half of the forty-two South Asian informants who answered this question thought that health involves multiple aspects of the person, making such an answer the second-most popular (21%). Among those, half mentioned health having both physical and mental components.1297 A Buddhist clarified that Tibetans tend to emphasize mental health and see it as the main determining factor towards physical health,1298 a point often repeated in public talks by

His Holiness the Dalai Lama1299 and with scriptural support from both Indian and Tibetan sources. For example, the second century Indian master Nāgārjuna’s text Precious Garland says that “since mind precedes all things, it is often said, “Mind is master.”1300 The eleventh century

Tibetan sage Gampopa, who actually was also a physician in addition to being a scholar-monk and the chief disciple of the great Tibetan yogi Milarepa, is quoted as saying “mind is the master,

1291 Williams gives the translation of the term as “self-dependence, sound state (of body or soul), health, ease, comfort, contentment, satisfaction (Williams 2008: 1284).” The spelling is the same in Sanskrit and Hindi, but the pronunciation is slightly different in that the “ah” sound in the final consonant in Hindi is dropped, or “pronounced half” according to Krishnamurthy (2016). 1292 ND-110814-H-001

1293 Wylie: 'phrod bsten. Tibetan for “health (Valby 2011).” 1294 DSL-040415-B-39 1295 Waldo 2011 1296 The Tibetan to English Translation Tool, version 3.3.0, 2011. 1297 J-112614-J-008, J-120414-J-013, J-121814-H-018, J-122414-H-020, D-011015-J-025, D-020415-J-026, C- 021615-CNA-30, DSL-040415-B-39, DSL-040615-B-40, DSL-040715-BMD-41. See Appendix A figure 2 for graph. 1298 DSL-040415-B-39 1299 Time-code 43:00, 2006 1300 Gampopa 2015: 221

480 and body and speech are its servants.”1301 An Indian Christian felt that the health of the body and mind mutually influence each other.1302 Beyond the Cartesian split of body and mind, health to many informants also included other aspects of the person such as the emotional and spiritual, as well as the soul. Several different configurations of these were expressed by informants as being implicated in health, such as the body and soul;1303 body, mind and soul;1304 mental, physical, spiritual; physical, mental, social;1305 and, lastly, physical, mental and emotional.1306 This final configuration came from a Jain informant who elucidated on his view of health including an affective component:

In Hindi, health swasth: means person who rests in his self/soul, means if want to remain healthy have to be inward. Essential to do meditation, only way to remain healthy. There are series of diseases linked to emotions, whatever thinking, way of living, thought- pattern, all causing disease, or curing if positive. Doctors have developed/invented which disease from which emotions. Sound health have to have sound thinking, compassionate for all beings, not just humans, creatures too. Leave alcohol, non-veg, as much in vicinity of nature external and internal, so much we will remain healthy. Three categories of health: (1) physical (linked to navel), (2) mental (heart chakra), (3) emotional (brain). If good emotions will be mentally sound, likewise physical body sound. Bad emotions think, hurt/cruel to others then our mental health distorted which will be reflected in physical body. In āyurveda,1307 great old ācāryas1308 (teachers) did work on gross prospect of health (wide spectrum) not just body. Not out of context to say that unfortunately allopathic way of treatment developed in Western countries did not get opportunity to hear about these philosophies so way of treatment limited to physical body. Due to lack, can see incompleteness/wide-gap in treatment, even best doctors

1301 Gampopa 2015: 221 1302 C-022815-C-33 1303 J-121914-JMD-019 1304 J-120414-H-012, J-122514-J-021, C-022815-C-33 1305 DSL-040115-BMD-37, DSL-040815-BMD-42 1306 J-112714-J-009

1307 “[T]he science of health or medicine (it is classed among sacred sciences, and considered as a supplement of the atharvaveda; it contains eight departments: 1. śalya- or (removal of) any substance which has entered the body (as extraction of darts, of splinters, etc.); 2. śālākya- or cure of diseases of the eye or ear etc. by śalākā-s or sharp instruments; 3. kāya-cikitsā- or cure of diseases affecting the whole body; 4. bhūtavidyā- or treatment of mental diseases supposed to be produced by demoniacal influence; 5. kaumāra-bhṛtya- or treatment of children; 6. agada-tantra- or doctrine of antidotes; 7. rāsāyana-tantra- or doctrine of elixirs; 8. vājīkaraṇa- tantra- or doctrine of aphrodisiacs etc. (Williams 2008)”

1308 Sanskrit for “a spiritual guide or teacher (Williams 2008: 131).”

481

realizes incompleteness. Health related to emotions, mental attitude, ultimately reflects in body.1309

But what do some Indians and Tibetans think health actually is? The most popular answer had to do with functionality, with over half of those that answered this question speaking of physical function (23%). This broad component of health was subdivided into twelve ways that function plays out in a person’s life:1310 the body can be seen as a machine1311 which allows for a daily routine1312 and the freedom to do what one wants,1313 and, most importantly given the highest number of responses, to be able to work.1314 One of those who spoke of healthy function as crucial for being able to work said that this is in order to support family,1315 and another informant stated that healthy function allows for family interaction.1316 Other informants said that healthy function gives opportunity for prayer,1317 completion of chores,1318 economic and social productivity, 1319 financial stability,1320 helping others,1321 experiencing pleasure1322 and perception through the sense faculties.1323 A Jain elaborated on this last point:

Term in Jain[ism] technical: paryāpti1324 - “enough,” used in context of human body (simple “enough” means I have enough…is it enough? paryāpta hai?).1325 Jains use for development of body and senses, other things also. Full development, sharir [body] paryāpta hua,1326 body has attained its full development. Used for everything, sense of

1309 J-112714-J-009 1310 See Appendix A figure 3 for graph. 1311 J-111714-M-004 1312 DSL-042015-S-46, J-121514-H-017 1313 ND-111014-JPHD-002, J-122614-H-022 1314 J-120114-H-010, J-120414-J-013, J-121514-H-017, D-010615-S-024, ND-042815-S-49 1315 ND-042815-S-49 1316 J-120114-H-010 1317 J-120114-H-010, DSL-042015-S-46 1318 J-120414-J-013, D-020415-J-026 1319 DSL-040115-BMD-37, DSL-042015-S-46 1320 C-021615-CNA-30 1321 J-120414-J-013 1322 J-112614-JND-007 1323 J-112614-J-008, J-121514-H-017 1324 “Obtained; enough; sufficient; considerable (amount) (McGregor 1993: 611).”

1325

1326

482

seeing/eyes, vision has attained full development [works perfectly]. If vision grows slowly while forming, attains six-by-six vision attained (maximum attainment). All the sense/limbs/parts of body should attain paryāpti [enough]. Development of features, coming in of soul, whatever process - it should be complete.1327

After outliers who had unique views on what health is, which together had the next most number of answers (36%) but will be addressed last, a state of well-being or eudaimonia was the third-most popular answer (9%).1328 Related, but conceptually distinct, were those (3%) who thought that happiness indicates health.1329

The next most popular answer after well-being were those who simply stated that health is the absence of disease (7%),1330 with one informant also using the word “defects” in addition to disease,1331 and another, a physician, speaking on what they think is the general view of their patients.1332 One clarified contrarily that health is not just the mere absence of disease.1333 Some

(6%) expressed a version of the saying “health is wealth,”1334 a rather popular maxim in India which was often stated by informants with gusto. For some, health was explicitly placed as the most crucial component in human life.1335 Next were those who mentioned fitness or being fit as important to health (4%),1336 and balance,1337 self-care1338 and mental calmness1339 were given as key components of health by only a couple of informants for each (2%). “Balance” will be explored more fully under the section on illness, but one Buddhist Tibetan informant somewhat

1327 J-112614-J-008 1328 J-111914-JMDNA-005, J-121014-H-015, J-121914-JMD-019, J-122414-H-020, J-122514-J-021, C-022815-C- 33, DSL-040115-BMD-37, DSL-041815-BMD-45 1329 C-021615-CNA-30, DSL-040715-BMD-41, DSL-041115-BND-43 1330 J-111914-JMDNA-005, J-112614-J-008, J-121014-H-015, J-121514-H-017, J-123014-H-023, J-120214-M-011, J-121314-M-016 1331 J-112614-J-008 1332 J-111914-JMDNA-005 1333 DSL-040115-BMD-37 1334 J-112614-JND-007, J-121814-H-018, DSL-032715-B-36, DSL-041715-S-44, DSL-042315-BRN-48, ND- 042815-S-49 1335 J-121814-H-018, C-020915-M-028, DSL-041715-S-44 1336 J-123014-H-023, D-020415-J-026, C-021015-C-029, ND-042815-S-49 1337 D-011015-J-025, DSL-040715-BMD-41 1338 DSL-032515-B-34, DSL-032615-BPHD-35 1339 J-111914-JMDNA-005, DSL-040715-BMD-41

483 elaborated on the topic - Dr. Tseten Dorji Sadutshang who is the personal physician to His

Holiness the Dalai Lama, Chief Medical Officer of the charitable Tibetan Delek Hospital and

Medical Advisor to Central Tibetan Administration:

State of body and mind that is in complete balance, not only within internal milieu but external environment, extend to planet, total balance.1340

Lastly are the outliers, which together made up the third-most popular category of answers (36%) on what health is, with one answer for each (1%). They include the following: strong body;1341 organs being in synch;1342 freedom from tension;1343 freedom from pain;1344 alertness;1345 interconnectedness between mind, body, soul;1346 good conduct,1347 education;1348 being peaceful;1349 contentment;1350 a smooth life;1351 being surrounded by happy people.1352

Lastly, a physician spoke of what his patients might say on the issue: an emphasis on spiritual health, having compassion and friends.1353 They had this to say:

In Tibetan/Indian patient they will prefer more spiritual healthiness main parameter of health. Compassionate towards surrounding and those inferior to them. Healthy means how many friends you have in Tibetan.1354

I struggled with some answers on health which seemed to blur the boundaries between being in a state of good health and the causes of that state. Perhaps it is too rigid to see a clean divide between cause and effect when, in some informants’ views, the cause and effect are the

1340 DSL-040715-BMD-41 1341 J-111714-M-004 1342 J-122414-H-020 1343 D-011015-J-025 1344 D-011015-J-025 1345 D-020415-J-026 1346 C-022815-C-33 1347 DSL-032615-BPHD-35 1348 DSL-032615-BPHD-35 1349 DSL-040715-BMD-41 1350 DSL-040715-BMD-41 1351 DSL-042015-S-46 1352 C-021615-CNA-30 1353 DSL-041815-BMD-45 1354 DSL-041815-BMD-45

484 same. For example, being surrounded by good company and diet were both given both as signs of being in good health and as causes of good health.

In summary, when defining health the most favored answers were respectively functionality, a healthy state involving multiple aspects of the person, well-being and the absence of disease.

Causes of Health

Informants who underwent the open part of the interviews were asked to share their views on the causes of heath. Forty-one answered this question (n=41), and because most gave several causes, averaging four, this produced one hundred and seventy-seven answers with twenty-one distinct categories.1355 Next to the outliers when grouped together, which will be addressed last, the most popular category was diet (15%).1356 Of those who mentioned diet, an equal number of three spoke of vegetarianism, a balanced diet and nutrition. Some other answers spoke of a diet with more fruits and vegetables, food being of good quality or hygienic. One informant said that a good diet is “like oil to the machine,”1357 and the sole Jewish participant said that keeping kosher, or “kashrut,1358 that is very healthy. We follow that. Non-veg not with milk. Thirty minutes after milk before non-veg, three hours with non-veg, some say two hours.

No mutton here, never had it!”1359 Because of the admonition against eating milk with meat in the laws of kashrut, this informant gives the waiting times between eating milk and meat,

1355 See Appendix B figure 4 for graph. 1356 J-111714-M-004, J-112614-JND-007, J-112614-J-008, J-112714-J-009, J-120114-H-010, J-120414-H-012, J- 120414-J-013, J-120914-HNA-014, J-121014-H-015, J-121314-M-016, J-121914-JMD-019, J-122414-H-020, J- 122614-H-022, J-123014-H-023, D-010615-S-024, D-020515-H-027, C-020915-M-028, C-021615-CNA-30, C- 022815-C-33, C[E]-022315-JW-32, DSL-032615-BPHD-35, DSL-032715-B-36, DSL-040115-BMD-37, DSL- 040415-B-39, DSL-041715-S-44, DSL-042015-S-46 1357 J-111714-M-004

1358 Hebrew for Jewish dietary laws, more commonly known as “kosher.” 1359 C[E]-022315-JW-32

485 depending on which comes first. He also indicates that there are differing opinions within the

Jewish traditions on how long to wait to have milk after eating meat.

The next most popular answer category was lifestyle (11%).1360 Among these answers, one mentioned that lifestyle involves mind, body and soul. Several spoke of routine, and one mentioned habits. Exercise (8%)1361 was the next most mentioned cause of health, with one informant calling it “being active.”1362

Several categories were given equal importance, such as mental and environmental causes of health (7%). For mental causes of health, there was some variety among the answers which I list here in order of the most to least popular. Informants referred to a positive attitude,1363 thinking,1364 attitudes,1365 mental position,1366 positive mind,1367 good thoughts,1368 and one quite unique answer which included “positive inputs, religious beliefs, family beliefs, reading”1369 as all contributing to mental causes of health. Most who referred to environmental causes of health did not offer more details,1370 except for one informant who said that by

“atmosphere” they mean “weather, air position, oxygen position, where living that territory, trees, season,”1371 and another who spoke of “fresh air.”1372

1360 ND-111014-JPHD-002, J-111914-JMDNA-005, J-112614-J-008, J-120114-H-010, J-120414-H-012, J-120914- HNA-014, J-121514-H-017, J-122514-J-021, D-020515-H-027, C-022815-C-33, DSL-032515-B-34, DSL-040115- BMD-37, DSL-040415-B-39, DSL-040815-BMD-42, DSL-042015-S-46, DSL-042315-BRN-48 1361 J-120414-J-013, J-120914-HNA-014, J-121014-H-015, J-121314-M-016, J-121914-JMD-019, J-122414-H-020, J-123014-H-023, C-021615-CNA-30, C-022815-C-33, DSL-032715-B-36, DSL-040115-BMD-37, DSL- 041715-S-44, J-120414-J-013, D-020415-J-026 1362 J-120414-J-013 1363 DSL-032615-BPHD-35, DSL-032715-B-36, DSL-041815-BMD-45, DSL-042015-S-46 1364 D-020515-H-027, J-120114-H-010 1365 J-111914-JMDNA-005, DSL-040415-B-39 1366 J-121814-H-018 1367 DSL-040415-B-39 1368 C[E]-022315-JW-32 1369 J-120414-J-013 1370 J-111914-JMDNA-005, J-112614-JND-007, J-120414-H-012, J-122414-H-020, J-122614-H-022, DSL-032515-B-34, DSL-040415-B-39, DSL-040715-BMD-41, DSL-041815- BMD-45, ND-042815-S-49 1371 J-121314-M-016 1372 J-112614-JND-007

486

Another tie between categories was with conduct and social (5%) causes of health. Some simply specified “conduct,”1373 but others spoke of conduct involving mental and physical behavior,1374 mind, body and soul,1375 or the triratna1376 (triple jewels) of body, speech and mind, 1377 behavior,1378 and non-harm, “including not breaking someone’s heart!”1379 Social causes of health varied greatly between answers with informants expressing it as relationships,1380 sociality,1381 community,1382 surroundings - people around you, friends;1383 family life,1384 good family as a “power back-up,”1385 and good/peaceful relationships with family and others.1386

Three other categories were tied with the same number of answers, yoga, emotions and hygiene (3%). Yoga was mentioned directly by most,1387 but one said that the Islamic five-fold daily prayer practice of “namaz1388 similar to yoga.”1389 Another said that health benefits come

1373 J-122414-H-020, D-020515-H-027, C-020915-M-028 1374 DSL-040715-BMD-41 1375 J-122514-J-021

1376 Here, given by a Jain as the three aspects of activity via the body, speech and mind. In the Buddhist context, the Three Jewels or “the 3 gems” are the sources of refuge for adherents: “buddha-, the law, and the monkish brotherhood (Williams 2008: 460),” or the Buddha (the teacher/founder), Dharma (the teaching/doctrine) and Saṅgha (the orders of monks and nuns). The Buddhist use of “Saṅgha” has different layers of meaning. It generally means “community,” which would include all adherents, but most often is used to mean the ordained communities. However, some give the “true Saṅgha” as those who have realized the nature of reality (emptiness) directly and non-conceptually, at which point one becomes an Ārya. One does not have to be ordained to have this realization. 1377 D-011015-J-025 1378 DSL-040415-B-39 1379 D-010615-S-024 1380 DSL-040715-BMD-41, DSL-040815-BMD-42 1381 J-120414-J-013 1382 DSL-032515-B-34 1383 J-120414-J-013 1384 J-120414-J-013 1385 ND-042815-S-49 1386 C-022815-C-33 1387 ND-110814-H-001, J-112614-JND-007, DSL-041715-S-44 1388 Persian namâz 1389 C-020915-M-028

487 from the four-fold Hindu yoga categories: “through work - karmayoga, 1390 worship - bhaktiyoga, 1391 knowledge - jñānayoga1392 and meditation - rājayoga.1393” 1394 Reference to emotions as a cause of health took different forms, such as one who simply mentioned positive emotions.1395 The rest were related in pairs, such as those who said “being peaceful and loving”1396 or “having love/caring towards others,”1397 and those who said “mind and soul happy”1398 or “happy heart.”1399 On the topic of hygiene, most simply pointed to it directly,1400 except for one who said that in Islam it is “including ablution.”1401

Six categories had only several answers (2%). One of these was substance abstinence which was referred to as “leaving alcohol,”1402 “avoidance of smoking, alcohol, drugs,”1403 or

“non-smoking” and which this physician said his patients esteem “in theory but not in practice.”1404 Another was sleep which was given as “proper sleep,”1405 a “good amount”1406 of

1390 Sanskrit for “performance of a work or business (especially of religious duties) (Williams 2008: 259).”

1391 Sanskrit for “devoted attachment, loving devotion (Williams 2008: 743).”

1392 Sanskrit for “the yoga- as based on the acquisition of true knowledge (opposed to karma-y[oga]- or the yoga- as based on performance of ceremonial rites) (Williams 2008: 426).” These three yogas are most often presented as the various religious paths one can follow to suit one’s disposition.

1393 Sanskrit for “a particular stage in abstract meditation, or an easy mode of meditation (Williams 2008: 873.” This fourth yoga is not typically given as one of the major Hindu paths, as with the other three mentioned above. 1394 ND-110814-H-001 1395 ND-110814-H-001 1396 DSL-032515-B-34 1397 DSL-032715-B-36 1398 J-112714-J-009 1399 J-120114-H-010 1400 J-120414-H-012, DSL-040115-BMD-37, DSL-042315-BRN-48, 1401 C-020915-M-028 1402 J-112714-J-009 1403 C-021615-CNA-30 1404 DSL-040115-BMD-37 1405 J-120914-HNA-014 1406 C-022815-C-33

488 sleep or just “rest.”1407 Karma, in general meaning the law of cause and effect of actions but translating from Sanskrit as “action,” was given as a cause of health,1408 and one physician said that this is one factor that their patients would consider as causing health.1409 Work was also thought of by some as a cause of health.1410 Various forms of mental focus were also given such as concentration,1411 alertness,1412 and meditation.1413 Lastly, a handful of informants mentioned balance 1414 as contributing to health, such as “balanced development” 1415 and work/life balance.1416

Five other categories shared only a couple of answers (1%), such as helping others1417 or

“yagyabhav1418 - working for good of others, creation as a whole,”1419 breathing or “what inhaled/exhaled”1420 and for one such includes breathing exercises,1421 genetics or genes for both this physician and their patients,1422 immune system,1423 and health causes being both mental and physical.1424

Lastly, and when aggregated together making up the largest category (18%), were those that had unique views on the causes of health, seven informants of which giving multiple unique

1407 J-121014-H-015, J-123014-H-023 1408 D-020515-H-027, ND-111014-JPHD-002 1409 J-111914-JMDNA-005 1410 J-121814-H-018, D-020515-H-027, DSL-040815-BMD-42 1411 J-112614-JND-007 1412 D-020415-J-026 1413 DSL-032615-BPHD-35 1414 D-011015-J-025 1415 J-112614-J-008 1416 C-020915-M-028 1417 ND-110814-H-001

1418 This term was difficult to locate. The closest rendering I could find was yajñabhāvana which is translated from Sanskrit as “promoting sacrifice (Williams 2008: 840).” 1419 ND-110814-H-001 1420 J-120914-HNA-014 1421 DSL-032615-BPHD-35 1422 J-111914-JMDNA-005 1423 J-121514-H-017, DSL-032615-BPHD-35 1424 DSL-032615-BPHD-35, DSL-040615-B-40

489 answers. They include the following: unforeseen circumstances; 1425 peace, regularity; 1426 humoural equilibrium, regular urination and bowel movements, sense faculties;1427 home and work atmosphere, support amongst family members, support from others;1428 living status,1429 being stress free,1430 traditional things,1431 blessings from parents and others, being quiet;1432 facial expressions such as smiling,1433 enjoyment, dental health (including ablution);1434 mind training,1435 inner and outer causes,1436 age, level of education (thought to be the opinion of this physician’s patients); 1437 playing with children, 1438 parenting and being loved as a child, opportunity; 1439 discipline, schedule of eating/sleeping/waking, prayer; 1440 self-care, 1441 inspiration from those who are doing well,1442 practicing sexual health,1443 and calmness which was elaborated upon by this informant: “being healthy as an Indian custom - stay calm, your energy taken by the brain. If worried will be thin, if mind calm will be fat. Definition by one Sat

Guru1444.”1445 By implication, for this informant a robust physical frame is a sign of good health.

1425 ND-111014-JPHD-002 1426 J-112614-JND-007 1427 J-112714-J-009 1428 J-120114-H-010 1429 J-121814-H-018 1430 J-121914-JMD-019 1431 J-122614-H-022 1432 D-010615-S-024 1433 D-020515-H-027 1434 C-020915-M-028 1435 DSL-032615-BPHD-35. This likely specifically refers to the Indo-Tibetan practice of transforming difficult circumstances into the religious path, called Lojong in Tibetan (Wylie: blo sbyong). 1436 DSL-040415-B-39 1437 DSL-040715-BMD-41 1438 DSL-041715-S-44 1439 DSL-041815-BMD-45 1440 DSL-042015-S-46 1441 DSL-042315-BRN-48 1442 ND-042815-S-49 1443 C-021615-CNA-30

1444 Meaning “true Guru/teacher” with sat being “that which is good or real or true, good, advantage, reality, truth (Williams 2008: 1134)” and guru as “teacher” or “preceptor (Williams 2008: 359).” Interestingly, the term also means “heavy, weighty (Williams 2008: 359)” and, from this, some religious teachers point to this meaning to indicate that the advice from and relationship with a guru are weighty.

490

Some of the items listed above are of course rather vague, such as “regularity” and “traditional things” and would have benefitted from clarification.

In summary, when answering on the causes of health, informants most preferred respectively diet, lifestyle, mental and environmental causes of health, and conduct and social causes of health.

Illness

All informants who engaged in the open part of the interviews were asked to define illness (n=35). Outliers with unique answers when grouped together made up the largest category

(19%), but will be addressed last. The most popular type of answer had to do with symptoms

(18%), with one physician saying that their patients define illness this way.1446 Many said that illness is feeling unwell,1447 but most mentioned pain1448 with a couple tacking on descriptors such as discomfort 1449 or suffering. 1450 Several mentioned fevers, 1451 a couple spoke of headaches.1452 Other symptoms mentioned were anxiety1453 and tension.1454 One health care professional said that illness is “not just pain.”1455

The next most popular category of answers addressed the multiple aspects (13%) of the person that illness involves, with most giving the mental-physical dichotomy1456 including one

1445 C[E]-022315-JW-32 1446 J-111914-JMDNA-005 1447 J-111914-JMDNA-005, J-121514-H-017, J-122514-J-021, J-123014-H-023 1448 J-121314-M-016, D-011015-J-025, DSL-042015-S-46, DSL-032615-BPHD-35, DSL-041115-BND-43 1449 DSL-032615-BPHD-35 1450 DSL-041115-BND-43 1451 J-121314-M-016, J-121514-H-017, C-020915-M-028 1452 J-121514-H-017, DSL-042315-BRN-48 1453 J-121514-H-017 1454 D-011015-J-025 1455 DSL-042315-BRN-48 1456 J-120414-H-012, J-121514-H-017, DSL-032615-BPHD-35, DSL-040715-BMD-41, DSL-041115-BND-43, DSL-042015-S-46

491 who stated that in addition to the body, “sem kam1457 - element of mind involved.”1458 One of these informants coupled emotional and mental health.1459 Two other configurations appeared, similar to each other and adding a third aspect to mental-physical such as spiritual1460 or soul1461 with one of these informants saying that in illness the soul can be “unholy.”1462

The next most prevalent answer category had to do with a mental disturbance1463 (10%) of some kind, and within this was included a negative state of mind,1464 bad outlook on life/relationships, 1465 unhappiness, 1466 discontent, 1467 and a disruption of well-being. 1468

Following this, some sort of physical dysfunction1469 was the next most frequently mentioned

(8%), also being called a physical problem1470 or a body part dysfunction1471 such as organ- failure1472 or a liver problem.1473

A couple of categories had the same number of answers (7%), such as those who said that illness was simply the opposite of health1474 and those who referred to some sort of bodily imbalance1475 (7%). One informant said that illness occurs when something “disrupts body

1457 Tibetan Wylie: sems kham. “Sems” translates from Tibetan as “mind,” and “kham” can mean “element” (usually associated with water), but can also mean a piece or bit of something (Valby 2011). 1458 DSL-032615-BPHD-35 1459 J-121514-H-017 1460 ND-111014-JPHD-002, J-111914-JMDNA-005, DSL-041815-BMD-45 1461 J-122514-J-021, C-022815-C-33 1462 C-022815-C-33 1463 J-111914-JMDNA-005, DSL-040715-BMD-41, DSL-041715-S-44 1464 DSL-042015-S-46 1465 C-022815-C-33 1466 DSL-040715-BMD-41 1467 DSL-040715-BMD-41 1468 DSL-041815-BMD-45 1469 ND-111014-JPHD-002, J-120414-H-012, J-122414-H-020 1470 C-021015-C-029 1471 DSL-042015-S-46 1472 C-021615-CNA-30 1473 J-121314-M-016 1474 ND-111014-JPHD-002, J-111714-M-004, J-111914-JMDNA-005, J-112614-J-008, J-122514-J-021, DSL- 040715-BMD-41 1475 J-123014-H-023

492

‘natural law’,”1476 but most referred to elemental imbalance.1477 One informant, the Junior

Assistant to the personal traditional physician to His Holiness the Dalai Lama, Dr. Y.K.

Dhondue, gave some explanation of imbalance between the three humours of wind, bile and phlegm:

Part of life, in medical text (Gyushi)1478 says lung-tripa-beken1479 in balance then healthy person physically and mentally. If out of balance, harms physically and mentally, then makes disease… Lung-tripa-beken related to five elements, healthy life five elements. Imbalance makes end of life also.1480

The next most number of informants spoke of illness as disease1481 (6%), with some parsing out the syllables as dis-ease,1482 or unease,1483 or using another illness synonym such as sickness1484 or simply saying that illness is bad health.1485

A handful of informants spoke of infectious disease (5%) either calling such a state an infection,1486 a virus,1487 a communicable/infectious virus1488 or saying “communicable, sexually

1476 J-122614-H-022 1477 DSL-032615-BPHD-35, DSL-040415-B-39, DSL-040715-BMD-41

1478 Wylie: rgyud bzhi. Tibetan for the Four [Medical] Tantras which “is the fundamental text of Tibetan medicine (Gonpo 2008: ii)” and “remains the main foundation for Tibetan medical education, research, pharmacology, and clinical practices (Gonpo 2008: viii).” It was written by “the most important figure in the history of Tibetan medicine (Gonpo 2008: v),” Yuthok Yonten Gonpo-I (708-833 CE), and was “primarily based on the indigenous Tibetan medical knowledge with synthesis of various Asian medical system added (Gonpo 2008: v).” The text was hidden and “rediscovered…in the 11th century,” thereafter “rewritten into the present form…by Yuthok Yonten Gonpo-II, a famous descendent of the previous Yuthok (Gonpo 2008: v).” He lived from 1126-1202 CE (Gonpo 2008: vii) and “re-organized and rewrote” it, “making it more complete, compatible, and comprehensive (Gonpo 2008: viii)” through the influence of “instructions that he received from Indian masters and physicians (Gonpo 2008: vii-viii)” in addition to the original text. 1479 Tibetan Wylie: rlung-mkhrispa-badken. Respectively: wind, bile, phlegm. 1480 DSL-041115-BND-43 1481 J-112614-JND-007, J-121314-M-016 1482 J-120414-J-013, J-121914-JMD-019, DSL-032615-BPHD-35 1483 DSL-040715-BMD-41 1484 DSL-041715-S-44 1485 J-112614-J-008 1486 J-121014-H-015, DSL-040115-BMD-37 1487 J-123014-H-023 1488 DSL-032515-B-34

493 transmitted disease (STD), viral.”1489 One informant gave several ideas (5%) on how illness is related to G-d:

Sometimes illness can be a reminder from God. Prophet Eyob (Iyud) [Job], God tested him by giving a big illness. Actually suffered a lot and lost everything. Worst skin disease that a person wouldn’t want to go close to him. God gave everything back to him, even youth, because such strong believer. Can be a reminder, I may…stop praying…illness can remind me to pray… Happy God is so concerned about me. Some illness, I believe, same like a fever body fighting against a bigger illness. Small illness by God to remind us and fight another illness…virus attack, body reacting, a gift from God. Whole immune system a gift from God.1490

So, for this informant illness can serve as a reminder of various things such as G-d’s concern for humans, the need to pray, that smaller illness could be alerting us to a worse illness, and that the immune system can be seen as a gift bestowed upon us.

Three categories only had a couple of answers (2%) such as illness being unfitness for work,1491 the “machine” of the body1492 not working,1493 or a karmic ripening. Two informants spoke of different types of illnesses, such as a Hindu who said that “those from karma, cannot be stopped…cannot be treated (ride it out).”1494

A Jain gave an answer from the perspective of Indic traditional medicine:

Illness - three modes, according to Ayurveda: (1) natural disease (hunger, thirst, pressure of urine) easily rectified; (2) invited disease (due to breaching laws of health, going against nature, harming nature, eating non-favourable things at odd times – for example, temperature, cold during cold), penalty imposed by nature, correct and will be cured; (3) karmic, bondage can be broken only through meditation. Whatever karmas bonded in previous birth have to face that, our cleverness if further extend/collect or finish.1495

There is tension between the statements related to karma-driven illness by these informants in that the Hindu feels that such illness must unavoidably be experienced, whereas the Jain holds

1489 C-021615-CNA-30 1490 C-020915-M-028 1491 J-111914-JMDNA-005, J-121514-H-017 1492 J-122414-H-020 1493 J-111714-M-004 1494 ND-110814-H-001 1495 J-112714-J-009

494 that although without spiritual interventions the illness must be experienced, there are means to purify such illness-causing karma.

Lastly are the outliers who held unique views (18%). They see illness as: interference to function/routine; decay, from a Hindi term - sharir - meaning the body but implying its transient nature;1496 something incurable, something with lengthy cure;1497 being hospitalized (what this physician thinks his patients would say),1498 natural, invited (as explored just above);1499 from food poisoning;1500 from an accident;1501 not just defined by abnormal lab results, not mere numbers;1502 social isolation;1503 when people think “I am sick;”1504 failure to cope or being “not able to handle and cope with realities and demands of life;”1505 bad conduct;1506 and pervasive:

“all the time there…unavoidable, always with us. Saṃsāra sitting on needle, always some pain physical and mental”1507

In summary, the most common ways of defining illness among study participants were by way of symptoms, something involving multiple aspects of the person, some form of mental disturbance or upset, and physical dysfunction. This closely mirrors what was found for definitions of health since function, involvement of multiple aspects of the person and well-being were also among the most common answers.

1496 ND-110814-H-001 1497 J-120114-H-010 1498 J-111914-JMDNA-005 1499 J-112714-J-009 1500 DSL-032515-B-34 1501 DSL-032515-B-34 1502 DSL-032515-B-34 1503 DSL-041815-BMD-45 1504 DSL-042315-BRN-48 1505 C-022815-C-33 1506 C-022815-C-33 1507 DSL-032515-B-34

495

Causes of Illness

All informants who had an open part of their interview were asked to give their views on the causes of illness (n=43). The top response category was the same as for the causes of health, diet1508 (15%), with several mentions of overeating1509 and the rest giving such answers as wrong eating,1510 untimely eating,1511 poor diet,1512 unbalanced diet,1513 not good food,1514 not keeping food in proper manner,1515 and malnutrition.1516

The next most prevalent answer category had to do with the environment (10%)1517 or surroundings,1518 with many concerned with changes in temperature1519 and/or climate1520 or the seasons.1521 A couple spoke of pollution1522 including one who associated it with cancer.1523

Following next in popularity was lifestyle1524 (8%) as a cause of illness, which ranked second in the causes of health, and sometimes was coupled with 1525 or referred to as habits. 1526

1508 J-112614-JND-007, J-120414-H-012, J-120914-HNA-014, J-121014-H-015, J-121314-M-016, D-011015-J-025, D-020515-H-027, C-022815-C-33, DSL-032515-B-34, DSL-032615-BPHD-35, DSL-040715-BMD-41, DSL- 041115-BND-43, DSL-041715-S-44 1509 ND-110814-H-001, J-120414-H-012, C-021015-C-029 1510 ND-110814-H-001 1511 C-021015-C-029 1512 DSL-040115-BMD-37 1513 J-123014-H-023 1514 J-120114-H-010 1515 C[E]-022315-JW-32 1516 J-111714-M-004 1517 J-111914-JMDNA-005, J-120914-HNA-014, J-121014-H-015, J-121314-M-016, D-011015-J-025, DSL- 040715-BMD-41 1518 J-120414-J-013 1519 DSL-040715-BMD-41 1520 J-120414-H-012, J-123014-H-023, C[E]-022315-JW-32 1521 DSL-041115-BND-43 1522 J-121514-H-017 1523 J-120914-HNA-014 1524 ND-111014-JPHD-002, J-111914-JMDNA-005, J-122514-J-021, C-021615-CNA-30, DSL-040115-BMD-37, J- 120414-H-012, J-121514-H-017 1525 J-120914-HNA-014, J-112614-JND-007, DSL-041115-BND-43 1526 J-122414-H-020

496

Communicable disease1527 (6%) came next and clarified by some as food or animal-borne,1528 insect-borne,1529 vector-borne such as malaria, 1530 or viral.1531

Karma1532 as a cause of illness was mentioned by the next most number of informants

(5%) and some Tibetan physicians added some thoughts such as one who said that “for some

[illnesses] we don’t have any reasons - idiopathic - can blame karma.”1533 This same physician and another gave what they thought their patients would say about karma as a cause of illness, such as it being an explanation for terminal illness,1534 and that “in Tibetan and Indian setup, especially elderly people, think [of illness] as karmic results of previous sins.”1535

Negative thinking1536 and conduct1537 had the same number of answers (4%), with the former also being referred to as mental disturbance1538 or a negative attitude1539 and the latter also being called behavior1540 or actions1541 and one informants associating it with cancer.1542

Negative emotions1543 and substance use also produced the same number of answers (3%), with the former also being called irritation,1544 which can come from others,1545 or anger.1546 The substances mentioned as addictive or abused were smoking,1547 alcohol1548 (which this informant

1527 J-122414-H-020, J-123014-H-023, C-021615-CNA-30, DSL-040815-BMD-42 1528 J-121014-H-015 1529 C[E]-022315-JW-32 1530 J-122414-H-020 1531 J-112614-J-008 1532 ND-111014-JPHD-002, J-120414-J-013, D-011015-J-025, D-020515-H-027 1533 DSL-040815-BMD-42 1534 DSL-040815-BMD-42 1535 DSL-041815-BMD-45 1536 D-011015-J-025, DSL-042015-S-46 1537 J-122514-J-021, DSL-032515-B-34, DSL-032615-BPHD-35 1538 C-021615-CNA-30, DSL-041715-S-44 1539 J-111914-JMDNA-005, DSL-040415-B-39 1540 DSL-032715-B-36 1541 ND-110814-H-001 1542 J-120914-HNA-014 1543 ND-110814-H-001, J-112714-J-009, DSL-032515-B-34 1544 J-120414-H-012 1545 DSL-042315-BRN-48 1546 DSL-032515-B-34 1547 DSL-040115-BMD-37

497 associates with cancer), or both.1549 Several informants mentioned that the causes of illness involve multiple aspects of the person (3%) such as the body and mind,1550 or adding to this binary either the soul1551 or speech.1552

Five answer categories on the causes of illness had equal numbers of answers (2%), such as: organisms1553 which were also called micro-organisms1554 or bacteria;1555 sleep-related with one simply mentioning poor sleep,1556 and two referencing an improper sleep-schedule which has one waking late1557 and late-to-bed/late-to-rise;1558 lack of exercise1559 or being sedentary;1560 mental tension1561 or self-created stress;1562 and poor hygiene1563 or unhygienic conditions.1564

Six other categories on illness causation had only a couple of answers among them (1%): genetics,1565 the immune system being weak1566 or variable between people,1567 lack of health- related knowledge,1568 excess talking,1569 external causes such as an accident1570 or adverse conditions,1571 and imbalance that is either humoural1572or elemental1573 in nature. Imbalance of

1548 J-120914-HNA-014 1549 J-120214-M-011, C-022815-C-33, DSL-040115-BMD-37 1550 D-020415-J-026, DSL-040715-BMD-41 1551 J-122514-J-021 1552 DSL-040615-B-40 1553 DSL-040815-BMD-42 1554 J-122414-H-020 1555 J-121514-H-017 1556 J-123014-H-023 1557 J-121814-H-018 1558 DSL-041715-S-44 1559 J-120914-HNA-014, J-121314-M-016 1560 DSL-040115-BMD-37 1561 J-111714-M-004, ND-042815-S-49 1562 ND-110814-H-001 1563 C-020915-M-028, DSL-040115-BMD-37 1564 C-021015-C-029 1565 J-111914-JMDNA-005, C-021015-C-029 1566 DSL-032615-BPHD-35 1567 J-121014-H-015 1568 DSL-032715-B-36, DSL-040615-B-40 1569 J-120414-H-012, DSL-042315-BRN-48 1570 J-112614-J-008 1571 DSL-042015-S-46 1572 DSL-040715-BMD-41 1573 J-122614-H-022

498 the humours is what a physician thought their patients might say, and on elemental imbalance this informant, who mentioned such an imbalance both as a state and a cause of illness, gave some additional details: “Ayurveda three things: vāta/pitta/kapha.1574 These balance the body, if anything out of that, then disease will come.”1575 These three Sanskrit terms are described as wind, fire, and water doṣas,1576 or energetic elements, as explained in greater detail here:

The Tridoṣa1577 Concept: According to Ayurveda, the human body is composed of three fundamental elements or categories called doṣas…(lit. faults)…, dhātus1578 and malas1579… Correct balance between the doṣas is important for good health. In a balanced state the doṣas sustain the body. Pitta and kapha are more passive, vāyu is very active. The assessment of the state of balance or unbalance among the vāyu is very important for correct diagnosis in Ayurveda. The three doṣas are: (1) vāyu or vāta (root=vā=gati-motion and gandhana=sensation). Vāyu is the originator of all movement in the body, and it governs mainly all nervous functions… (2) pitta (root tap=santāpa=heat…governs mainly enzymes and hormones… (3) kapha or śleṣmā (old original term used, root śliṣ=āliṅ-gana=embrace or cohesion) regulates the other two… The doṣas pervade the entire body… Although pervading the entire body, the doṣas are primarily prominent in certain parts of the body.1580

Tridoṣa also seem to be somewhat correspondent with the humours in Tibetan medicine, which is influenced by Ayurveda in addition to other traditional medical systems, since in Hindi the terms vāyu/pitta/śleṣmā translate as air, gall and mucous.

1574 Sanskrit for wind, fire, and water. Vāta is sometimes given as vāyu, and kapha is preceded by an older term, śleṣmā. 1575 J-122614-H-022

1576 Sanskrit for “morbid element, disease (Williams 2008: 498).”

1577 Sanskrit for “disorder of the 3 humours of the body (Williams 2008: 358).”

1578 Sanskrit for “a constituent element or essential ingredient of the body… conceived either as 3 humours [called also doṣa-]...or as the 5 organs of sense, indriyāṇi- (Williams 2008: 513).” 1579 Sanskrit for “any bodily excretion or secretion (especially those of the dhātu-s…described as phlegm from chyle, bile from the blood, nose mucus and ear wax from the flesh, perspiration from the fat, nails and hair from the bones, rheum of the eye from the brain…(Williams 2008: 792).” 1580 Dash/Julius 2003: 15-17, 19

499

Lastly, the outliers together (22%) made up the largest category (each less than 1%) of views on illness causation that don’t easily fit together and include the following: bimāri1581 -

Sanskrit term for disease,1582 hectic routine,1583 carelessness of others,1584 caused by self or others,1585 being bothered by other people,1586 lack of self-care,1587 causing harm,1588 wrong work or not following one’s duty,1589 lack of discipline,1590 unforeseen circumstances,1591 infection,1592 body function disturbance, 1593 injury, 1594 being shocked, 1595 discontinuity, 1596 clothing as it relates to exposure to elements,1597 improper breathing,1598 poor dental health,1599 nature,1600 poor parenting,1601 business problems,1602 trauma (such as from escaping Tibet),1603 lack of caring (in orphanage), 1604 unemployment, 1605 poverty, 1606 family problems, 1607 co-dependent relationships,1608 being irreligious which can make one ill-equipped and lacking in direction,1609 and some metaphysical causes such as destiny (which this physician thought might be a view of

1581 Sanskrit for “sickness (Danesh/Cardona 2003).” 1582 D-011015-J-025 1583 J-120914-HNA-014 1584 C-020915-M-028 1585 J-112614-J-008 1586 C-021615-CNA-30 1587 DSL-040815-BMD-42 1588 DSL-032515-B-34 1589 J-121814-H-018 1590 DSL-042015-S-46 1591 ND-111014-JPHD-002 1592 D-020515-H-027 1593 J-112614-J-008 1594 J-120414-J-013 1595 J-120414-J-013 1596 J-120414-J-013 1597 J-121014-H-015 1598 DSL-032615-BPHD-35 1599 C-020915-M-028 1600 D-010615-S-024 1601 DSL-041815-BMD-45 1602 ND-042815-S-49 1603 DSL-041815-BMD-45 1604 DSL-041815-BMD-45 1605 J-111714-M-004 1606 J-111714-M-004 1607 ND-042815-S-49 1608 C-022815-C-33 1609 C-022815-C-33

500 his patients), 1610 evil spirits 1611 and black magic. 1612 It was surprising to me that so few informants spoke of supernatural illness etiologies, but this sole informant who spoke of black magic explained a bit of what they meant:

Modern person, many do practice. Impact enemies to harm by magic. Make practice, not directly, create something like disease… In villages, cities also same. Power learnt easily, create anything… Anything…heart, blood… Village girl, hard to tell who did it… Only God believers…can find out, some experts.1613

In summary, diet, environment, lifestyle, communicable disease and karma were respectively given as the most prominent causes of illness. This somewhat mirrors the answers given for the causes of health as diet also was the top choice, and lifestyle and environment too were among the top five answer categories.

Death

Most informants were asked during the open interview to define death (n=30), and over half who answered said that it is the time when body function ceases and something metaphysical departs, amounting to a quarter of the answers given (25%). That which leaves the body was referred to as the soul,1614 or rūḥ1615 in Arabic which was made equivalent with

ātma in Sanskrit by one informant.1616 One Jain stated that “your soul…inspects the next life, comes back to body and then goes off.”1617 Others said that it is the spirit,1618 lifeforce,1619 mind/consciousness1620 or mind/spirit1621 that leaves. Still others gave multiple things that leave

1610 J-111914-JMDNA-005 1611 DSL-041115-BND-43 1612 D-020515-H-027 1613 D-020515-H-027 1614 J-112614-J-008, J-112714-J-009, J-120414-H-012, J-122514-J-021, D-011015-J-025 1615 Arabic for “Soul (Almaany 2018).” 1616 J-121314-M-016 1617 J-120414-J-013 1618 J-121014-H-015, C-020915-M-028 1619 DSL-032715-B-36 1620 DSL-040415-B-39

501 at death, such as lifeforce and soul,1622 or mind/consciousness and subtlest wind-energy since the

“subtlest lung1623 and mind inseparable, travel together.”1624 Some Tibetan sources compare the mind and subtle wind-energy to the rider and the horse, with the mind riding on the subtle wind.1625 Translator Rangjung Yeshe gives prāṇa1626 as the Sanskrit equivalent for the Tibetan word lung and defines it as the subtle ‘winds’ or vital psychic energy-currents of the body.1627

Prāṇ was said to leave at death as well.1628

The next most popular answer category (10%) mentioned death as travelling,1629 or a change of abode1630 or changing clothes for those who are prepared1631 or “like when you drop your jacket when you don’t need it, take up in winter.”1632 After this, organ failure was the next most prevalent answer (8%),1633 such as cardiac arrest.1634

Two answer categories had the same number of answers (6%), the inevitability1635 of death which was also referred to as death being definite,1636 natural1637 or the culmination of life,1638 and that death is the completion of the lifespan.1639

1621 ND-110814-H-001 1622 C-021015-C-029 1623 Tibetan Wylie: rlung. “The 'winds' or energy-currents of the body (Yeshe 2011).” 1624 DSL-032615-BPHD-35 1625 Tsongkhapa 2013: 4. 1626 Sanskrit for “the breath of life, breath, respiration, spirit, vitality (Williams 2008: 705).” 1627 Yeshe 2011. Yeshe adds “subtle motile energy” to the definitions of rlung/prāṇa. This, along with the fact that vāta/vāyu (as discussed above under the causes of illness) is associated with motion both in its etymological root and in the usage/meaning of the term, seems to imply that although prāṇa and vāta/vāyu are different terms and conceptually distinct, there is some overlap in meaning. 1628 J-112614-JND-007 1629 J-122614-H-022, C-020915-M-028 1630 J-112614-J-008, C-022815-C-33 1631 DSL-032515-B-34 1632 J-120414-H-012 1633 J-121514-H-017, J-122414-H-020, J-123014-H-023, C-022815-C-33 1634 DSL-032615-BPHD-35 1635 J-123014-H-023 1636 J-121014-H-015. Informants were also asked what happens after death, and some (such as this one) wondered if that meant for the deceased or the survivors, and some talked about both. Data related to the post-mortem period has been excluded as it is beyond the scope of this study. 1637 DSL-042015-S-46 1638 C-022815-C-33

502

Aside from the outliers, the remaining categories had only a couple of answers each (3%) such as death being: unpredictable;1640 preordained by G-d;1641 the stoppage of the sense faculties;1642 brain-death;1643 cellular death;1644 known by those about to die imminently1645 which one informant said is “often seen when person is about to die - best sensations (person becomes very alive);”1646 sometimes from suicide1647 which one informtant explained can be from “mental illness/pressures leading someone to commit suicide;”1648 and finally breath loss1649 since “once lose breath, body like a packet/parcel, non-living;”1650

The outliers for this topic together make up the second most numerous category (19%) and included ideas of death being: central nervous system (CNS) breakdown;1651 a time only known by G-d;1652 feared;1653 scary/painful for the unprepared;1654 an immediate1655 change in status (alive to dead);1656 analogous to sleeping;1657 during meditation as an ideal way of passing;1658 and sometimes taking place as a result of accidents,1659 loneliness,1660 murder,1661 or when the number of preordained breaths exhausted since “we believe that number of breaths in

1639 J-121014-H-015, J-121814-H-018, D-010615-S-024, DSL-042115-BRtl-47 1640 J-121014-H-015, D-020515-H-027 1641 J-120214-M-011, D-020515-H-027 1642 J-120914-HNA-014, J-121014-H-015 1643 J-120914-HNA-014, J-123014-H-023. I kept this as distinct from organ-failure since brain-death is categorically different as the cause of overall system failure. 1644 C-021015-C-029, C-022815-C-33 1645 D-020515-H-027 1646 J-120414-J-013 1647 J-112614-JND-007 1648 J-122414-H-020 1649 J-121514-H-017 1650 J-121014-H-015 1651 C-022815-C-33 1652 J-121014-H-015 1653 D-020515-H-027 1654 DSL-032515-B-34 1655 D-020415-J-026 1656 D-020415-J-026 1657 DSL-040615-B-40 1658 D-011015-J-025 1659 J-122414-H-020 1660 J-123014-H-023 1661 J-112614-JND-007

503 life written from when we take birth, it is fixed - how many inhale. When account finishes like bank account. Similarly, total number of reach in life-bank, when it finishes out man dies.”1662

In summary, the most popular views on death were that it is accompanied by something metaphysical leaving the body, simply travelling from one abode/form to another, and organ failure.

Religion

All informants who had an open part of their interview were asked to define religion

(n=43). Because of the great diversity of religions in India, and even the diversity found within religious traditions themselves (perhaps especially “Hinduism”), it may come as no surprise that the largest number of answers were unique (23%) and is in total greater than the number of informants who answered. After the outliers three answer categories equally had the most number of answers (9%), in which religion was defined as a belief system or as something problematic, which is fascinating but perhaps unsurprising given the history of religious violence in India, and involving praxes. Mentions of beliefs took various forms such as a system, 1663 philosophy, 1664 something shared, 1665 good concepts, 1666 thoughts, 1667 views, 1668 principles,1669 and belief in a strong power1670 or supernatural force.1671 The second of the most popular answer categories had religion being criticized as a “dirty word today, divides people…

We need community, tribal by nature. Religion unifying for one’s own people, divisive for

1662 DSL-042015-S-46 1663 J-120914-HNA-014, J-121014-H-015, DSL-040715-BMD-41, DSL-041115-BND-43, DSL-041715-S-44, DSL- 041815-BMD-45 1664 J-121914-JMD-019, DSL-040415-B-39 1665 J-121514-H-017 1666 J-111914-JMDNA-005 1667 J-120414-J-013 1668 J-122514-J-021 1669 D-010615-S-024 1670 ND-042815-S-49 1671 C-022815-C-33

504 others.”1672 The most number of critics focused on the political appropriation of religion:1673

“human selfish interest have corrupted meaning of well-intentioned religion to suit political/religious… People misuse for own vested ends. It is in a negative sense because causes strife. If not practiced by narrow-minded…world better off.”1674 Religion was also expressed as something: to fight for;1675 that creates problems;1676 controlled and interpreted by Gurus and scriptures; 1677 leading to gullibility; 1678 misused to cause social problems and community violence;1679 exploited as a term in India1680 and used nominally;1681 used to pressure others to conform;1682 used as a platform for money-grubbing,1683 fear-mongering1684 and hypocrisy.1685

The third category among the most prevalent answers were on praxes, or practices, associated with religion which included worship,1686 temple attendance,1687 scripture reading,1688 marking events in the life-cycle,1689 purification,1690 renunciation,1691 truthfulness,1692 non-stealing,1693 brahmacharya 1694 or celibacy, wearing physical signs of religion, 1695 following dietary

1672 ND-110814-H-001 1673 J-112614-J-008, DSL-041815-BMD-45 1674 J-111914-JMDNA-005 1675 J-120914-HNA-014 1676 ND-111014-JPHD-002 1677 J-111914-JMDNA-005 1678 J-111914-JMDNA-005 1679 DSL-032515-B-34 1680 DSL-041815-BMD-45 1681 DSL-041815-BMD-45 1682 DSL-041815-BMD-45 1683 C-021615-CNA-30 1684 C-021615-CNA-30 1685 C-021615-CNA-30 1686 J-112614-J-008 1687 J-123014-H-023 1688 J-123014-H-023 1689 J-121514-H-017 1690 J-122514-J-021 1691 D-011015-J-025 1692 D-011015-J-025 1693 D-011015-J-025

1694 Sanskrit for “the state of an unmarried religious student, a state of continence and chastity…to practise chastity (Williams 2008: 738).” Literally meaning “conduct of Brahma,” but generally meaning celibacy. D- 011015-J-025

505 restrictions1696 and prohibitions against substances.1697 Lastly are several practices that were thought by a physician to be the views on religion of patients such as benefitting others,1698 kora1699 or circumambulations and mantra1700 recitations.

The next most popular answer category on religion had to do with conduct1701 (9%) and was also referred to as a code of conduct, 1702 a means to control habits, 1703 common interests/actions1704 and, for one informant, conduct was important but with the caveat that it is not a set of rules.1705

Following this are two answer categories that had the same popularity (6%), such as one related to religious teachings,1706 guidance1707 or a path1708 which can give methods1709 and reasoning1710 as to why it is important for people to transform. The other had to do with positive emotions such as religion being a source of happiness1711 or sustained happiness, for self and

1695 D-010615-S-024 1696 DSL-041715-S-44 1697 DSL-041715-S-44 1698 DSL-040715-BMD-41

1699 Tibetan Wylie: skor ra, “circumambulation, round [encircling a holy object]” (Waldo/Yeshe 2011). DSL-040715-BMD-41 1700 Sanskrit for “‘instrument of thought’, speech, sacred text or speech, a prayer or song of praise” or “a sacred formula addressed to any individual deity (Williams 2008: 785)” but translated by some to mean “mind- protector.” Mantras are found in all three major Indic religious traditions and consist of strings of Sanskrit syllables which often have no literal meaning and which are thought to have vibrational or embedded power to produce certain effects or trigger certain qualities in the reciter, often also associated with particular deities as mentioned by Williams. DSL-040715-BMD-41. 1701 DSL-040715-BMD-41, D-010615-S-024, C[E]-022315-JW-32, DSL-041715-S-44 1702 ND-111014-JPHD-002, J-112714-J-009, J-120414-H-012, J-120914-HNA-014, , J-121314-M-016, J-122414-H- 020, C-020915-M-028 1703 J-122614-H-022 1704 DSL-041815-BMD-45 1705 J-122514-J-021 1706 DSL-032715-B-36, DSL-040115-BMD-37, DSL-041715-S-44 1707 J-120414-J-013, DSL-032515-B-34, J-120214-M-011 1708 J-121314-M-016 1709 DSL-040615-B-40 1710 DSL-040615-B-40 1711 DSL-032715-B-36

506 others,1712 and a cause of mental well-being.1713 Informants also mentioned that religion helps one to be free from regret,1714 gives satisfaction when one is irrational,1715 controls negative emotions, 1716 brings peace of mind, 1717 is soothing 1718 and can provide emotional shock- absorption.1719 Love1720 was, surprisingly to me, only mentioned once.

The next most numerous answer category had to do with religion as being good to each other (5%)1721 and humanitarian1722 and acting kindly1723 such as by giving knowledge and resources1724 and helping others non-judgmentally.1725

The next two answer categories were very close in number (4%) and contains those who spoke of religion being theism1726 or a term related to faith in G-d,1727 and religion being a tradition that one is born into,1728 that is passed between generations1729 or passed on by founders/teachers,1730 or something that is based on faith rather than reason and logic.1731

Four categories shared the same number of answers (3%) such as religion being a way of life;1732 something that promotes non-harm,1733 non-violence1734 or any conscious non-harm;1735

1712 DSL-040715-BMD-41 1713 DSL-041815-BMD-45 1714 DSL-032715-B-36 1715 D-020415-J-026 1716 J-123014-H-023 1717 DSL-032715-B-36 1718 D-020415-J-026 1719 D-020415-J-026 1720 C-021615-CNA-30 1721 C[E]-022315-JW-32, DSL-042015-S-46 1722 J-121914-JMD-019, DSL-032715-B-36 1723 DSL-040115-BMD-37 1724 C-022815-C-33 1725 C-021615-CNA-30 1726 J-120114-H-010, J-120414-H-012, J-121814-H-018, C-021015-C-029, C-021615-CNA-30, ND-042815-S-49 1727 DSL-032615-BPHD-35 1728 J-112614-JND-007, J-120214-M-011, DSL-041715-S-44 1729 J-123014-H-023 1730 D-010615-S-024 1731 DSL-041115-BND-43 1732 ND-111014-JPHD-002, J-112714-J-009, J-121814-H-018, J-122414-H-020, C-022815-C-33 1733 J-120414-H-012, DSL-032515-B-34 1734 J-121914-JMD-019, D-011015-J-025

507 transformative1736 in helping to make better people1737 or develop the mind and body;1738 and labeled as “dharma.” One Jain informant stated that “dharma and religion same,”1739 and three

Buddhist Tibetans gave the Tibetan equivalent with the Sanskrit, with explanation. The first said

“cho, 1740 dharma means ‘protect’ you from falling down to more severe suffering experiences.”1741 The second clarified that “cho - two meanings: ‘holds own identity,’ rang ngo wo zin pa1742 – hold/save beings from suffering, mind transformation. As ‘dharma’ – teachings, belief, faith.”1743 Among Tibetans, dharma and cho are both used at times to mean “religion” in general and the Buddhist religion in particular, but the latter is sometimes made more specific by terms such as sangye cho1744 which means buddhadharma or Buddhist doctrine, and nang pai cho1745 which means the Buddhist religion, or literally “the religion of insiders.” This is typically explained not to mean belonging to an exclusive group, but that that the Buddhist approach is a mind-based internal pursuit. Another Jain gave a more elaborate reckoning of some of the various meanings of dharma:

1735 DSL-032615-BPHD-35 1736 DSL-040715-BMD-41 1737 DSL-032515-B-34, DSL-040615-B-40, DSL-040815-BMD-42 1738 DSL-040715-BMD-41 1739 J-112714-J-009 1740 Tibetan Wylie: chos. As with its Sanskrit equivalent dharma, there are multiple meanings for the term. Yeshe gives fourteen: “1) Dharma, reality 2) , phenomena 3) Dharma, the teaching of the Buddha; 1) dharma, phenomenon, thing, existent, [a truly real predicate, event, entity, element or ultimate constituent of existence]. 2) Dharma,…Religion. 3) the Dharma, the Teachings, the Doctrine. 4) quality, attribute, property, characteristic, ability. 5) a teaching, doctrine, text, scripture, sacred text. 6) right, virtue, duty, moral law, tenet, precept. 7) truth, order, law. 8) practice, dharma -, religious. 9) mental object, dharma. 10) religion, religious system, way of belief. 11) topic, point, principle. 12) meaning, value, sense, meaning, worth; content. 13) [and when used in conjunction with various verbs]…to preach, give religious teaching,…to hear, listen to religious teaching,…to practice religion, live a religious life,…to receive religious instruction, to seek, ask for religious teaching…14) mind objects…(Yeshe 2011).” DSL-040615-B-40 1741 DSL-032615-BPHD-35

1742 Tibetan Wylie: rang ngo bo zin pa 1743 DSL-040415-B-39

1744 Tibetan Wylie: sangs rgyas chos. Meaning “Buddhist doctrine.”

1745 Tibetan Wylie: nang pa’i chos. Meaning “Buddhism” but literally “religion of insiders.”

508

Confusing thing, I’ll tell you! The Indian term dharma got translated as religion, but it is not exactly religion, English term associates with certain set of rules/school of thought/way of living, worship etc. Term dharm envelops all these things. Basic meaning “that which sustains you,” translates comes as “properties.” Set a parameter “I am Christian,” certain beliefs/rules, those who follow these rules/identified with these rules are called Christians, that set of rules that becomes religion… Here, religion is such a wide term, used as an adjective for so many things: putradharm1746 – ‘putra’ means “son” sounds odd to say ‘son’s religion.’ Here means all duties society has defined for son - called putradharm. Similarly, rājdharm1747 - duties of state/king, taking care of public, state and all these things, fighting for the state. In terms of sect: then religions we are talking about in India are not dharma they are sects, includes worship. Way part religion defined is dharm...can use anywhere: describing a table, there is a dharm of table… One should be clear what dharm is and what religion is.1748

In addition to “religion” and “that which sustains you,” which are remarkably similar to what the

Tibetans mentioned, this Jain also gives dharma as “duty,” and the “properties” of something and that “there is a dharm of table” which parallels with the Tibetan rang ngo wo zin pa, ‘holds own identity.’ Ngo wo is svabhāva1749 in Sanskrit and Hindi, sometimes translated as “own- being” or the “nature” of a thing. One last way that dharma and cho are translated is as

“phenomenon.” Clearly, this Indic term is not bound to a particular usage as “religion.”

Several other categories for defining religion had the same number of answers (2%), such as community;1750 the nonsectarian1751 oneness1752 of religions which unites people1753 since the

“separation of religions not good;”1754 and the sameness of religions1755 since of “all religions,

1746 Sanskrit for “filial duty (Williams 2008: 632).”

1747 Sanskrit for “Royal/Kingly Duties.” 1748 J-112614-J-008 1749 Sanskrit for “own condition or state of being, natural state or constitution, innate or inherent disposition, nature, impulse, spontaneity (Williams 2008: 1276).” 1750 ND-110814-H-001, J-121514-H-017, D-020515-H-027, C[E]-022315-JW-32 1751 D-020515-H-027 1752 D-020515-H-027 1753 DSL-042015-S-46 1754 D-020515-H-027 1755 J-120414-J-013

509 none say take sword”1756 and there can be found “peace/devotion/harmony in every religion.”1757

One informant stated that “every religion says we are good” and gave the analogy of different people getting to a Kentucky Fried Chicken restaurant:1758 “religions same destination, different routes.”1759 Prayer1760 had one less answer.

Two final answer categories shared only a couple of answers (1%), and are comprised of those who mentioned faith1761 and holy texts.1762

Finally, as they have in several of the other topics, the outliers grouped together make up the largest answer category in defining religion (14%). Answers include such things as divine grace; 1763 creation; 1764 cosmology; 1765 science; 1766 ratnatraya: 1767 samyagdarśana, 1768 samyagjñāna, 1769 samyakcāritra 1770 known in Jainism as the triple gems of right faith, knowledge and conduct.1771 Religion was seen as something which should pervade daily life1772 and can help us create balance,1773 equality,1774 and connect with others and nature.1775 For some

1756 C[E]-022315-JW-32 1757 J-112614-JND-007 1758 Referred to by many simply as “KFC,” the chain was popular at each of my field-sites and for the Indian context, has segregated kitchen areas for the preparation of meat and vegetarian items. 1759 J-120214-M-011 1760 J-123014-H-023, J-111714-M-004, ND-042815-S-49 1761 DSL-041815-BMD-45, D-010615-S-024 1762 ND-111014-JPHD-002, DSL-041115-BND-43 1763 ND-042815-S-49 1764 J-121314-M-016 1765 J-121314-M-016 1766 DSL-040415-B-39 1767 Sanskrit for “jewels-triad (Williams 2008: 864)” or triple-gem.

1768 Sanskrit for “right perception or insight (Williams 2008: 1181).” 1769 Sanskrit for “right knowledge (Williams 2008: 1181).”

1770 Sanskrit for “right conduct (Williams 2008: 1181).” 1771 J-122514-J-021 1772 C-022815-C-33 1773 DSL-040715-BMD-41 1774 D-010615-S-024 1775 DSL-041815-BMD-45

510 it can involve seeking,1776 spirituality,1777 openness to other religions,1778 and is an individual choice.1779 Some informants indicated the existence of sects,1780 variety within traditions,1781 differences between Western and Eastern approaches1782 and there not being only theistic traditions. 1783 Religion was seen as a type of social contract 1784 involving duty. 1785 Some religions were thought of as non-missionary/non-conversion1786 and needing to change to suit a contemporary context by being “modified and modernized.”1787 Lastly one informant saw the main essence of adopting a religion as for the purposes of living a healthy and long life.1788

In summary, when defining religion, the most prevalent answers were equal in number across three categories which designated it as a belief system, something socially problematic and involving various praxes. Conduct was the next most popular answer, followed by two answer categories that were also equal in number, teachings and the generation of positive emotions.

Healthcare Pahala sukh nirogī kāya - the first happiness is health.1789

Each informant who had an open interview was asked to define healthcare. Three answer categories had an equal prevalence of answers (9%), self-care, institutions, and healthcare

1776 J-120214-M-011 1777 DSL-041815-BMD-45 1778 J-121014-H-015 1779 J-121014-H-015 1780 J-112614-J-008 1781 J-122414-H-020 1782 J-122514-J-021 1783 D-020515-H-027 1784 J-122414-H-020 1785 J-112614-JND-007 1786 C[E]-022315-JW-32 1787 J-120414-H-012 1788 J-112714-J-009

1789 Literally “the first happiness is a healthy body.” J-121014-H-015

511 provider (HCP) activities along the patient trajectory. Self-care1790 was elaborated upon by several informants as involving diet and exercise,1791 including timely eating1792 and not relying just on prayer,1793 a good routine and “doing away with bad things.”1794 Institutions mainly referred to hospitals,1795 a good hospital1796 or hospital/clinic1797 but also included nursing homes1798 or old age homes and hospices.1799 HCP activities along the patient’s journey, which could apply to either traditional or biomedical healthcare, included diagnostics such as urinalysis1800 or checking scores of basic [vitals] such as blood sugar,1801 diagnoses,1802 medical treatment1803 and treatment plans,1804 monitoring patient progress,1805 prognostication1806 and following up with after-care such as, according to one physician at a charitable hospital, helping patients find employment.1807

The next most number of informants (6%) saw healthcare as preventive1808 or for the purposes of disease prevention.1809 Included within this category are those who spoke of preventing public health issues1810 and there being a general lack of public health promotion in

1790 J-120214-M-011, J-123014-H-023, D-010615-S-024, D-020515-H-027, C-020915-M-028, C-021015-C-029, DSL-042015-S-46 1791 DSL-032715-B-36, D-010615-S-024 1792 D-010615-S-024 1793 DSL-032715-B-36 1794 DSL-042015-S-46 1795 J-122414-H-020, C-022815-C-33, DSL-040815-BMD-42, DSL-041115-BND-43, DSL-041715-S-44 1796 J-111914-JMDNA-005 1797 J-123014-H-023 1798 J-123014-H-023 1799 C-022815-C-33 1800 DSL-041115-BND-43 1801 J-121514-H-017 1802 DSL-040115-BMD-37 1803 DSL-040115-BMD-37 1804 DSL-040115-BMD-37 1805 DSL-040115-BMD-37 1806 D-020415-J-026 1807 DSL-041815-BMD-45 1808 J-111914-JMDNA-005 1809 DSL-040115-BMD-37 1810 DSL-040115-BMD-37

512

India.1811 A couple of informants gave some individualized ways to maintain the body and prevent illness such as through exercise, lifestyle, and pūjā1812 which is a pan-traditional Indic term referring to a type of prayer usually done ceremoniously. Another spoke of vows of non- harm:

Most important in Jainism and Buddhism, preventive rather than curative. Vows based on wisdom of teachers, if follow you prevent… Śramaṇic1813 traditions, emphasis preventive. Ritualistic traditions talk of curative… Preventive measure - to avoid overeating, weight-gain, tension, laziness.1814

The heterodox śramaṇa movement “developed at a similar time and in parallel with the Vedic movement”1815 prior to the advent of Jainism and Buddhism in the fifth century BCE, but was the basis from which both Jainism and Buddhism arose. Śramaṇa “refers to people who perform acts of austerity, or are ascetic. Therefore, the shramanas... moved away from Vedic traditions and pursued a path of ascetic acts to achieve liberation and realize the essence of human life and consciousness.”1816As alluded to by this informant, the śramaṇa movement eschewed ritualism as it “started as a protest against Brahmanical orthodoxy.”1817 This informant gives the main difference between Vedic1818 and Śramaṇic approaches to health as curative for the ritualistic, and preventive for the ascetic.

1811 J-111914-JMDNA-005 1812 Sanskrit for “honour, worship, respect, reverence, veneration, homage to superiors or adoration of the gods (Williams 2008: 641). J-121014-H-015 1813 Śramaṇa is Sanskrit for “one who performs acts of mortification or austerity, an ascetic, monk, devotee, religious mendicant (Williams 2008: 1096).” 1814 ND-111014-JPHD-002 1815 Triana, 2017: 163 1816 Triana, 2017: 163 1817 Siderits 2017:16

1818 Williams gives Veda as the “Name of certain celebrated works which constitute the basis of the first period of the Hindu religion (these works were primarily three, viz. 1. the ṛg-veda-, 2. the yajur-veda-…3. the sāma-veda- ; these three works are sometimes called collectively trayī-, “the triple vidyā-” or "threefold knowledge", but the ṛg- veda- is really the only original work of the three, and much the most ancient [the oldest of its hymns being assigned by some who rely on certain astronomical calculations to a period between 4000 and 2500 B.C., before the

513

Two more answer categories shared the same number of responses (5%) such as one which associated healthcare with physicians,1819 private doctors1820 or having a “good doctor” which one physician thought their patients seek. Another informant gave high praise to physicians as “Earthly gods.”1821 Several other informants said that healthcare involves both the body and the mind,1822 with biomedical physicians for physical problems and psychiatrists for mental ones.1823

Four more answer categories had the same prevalence of answers (4%) such as healthcare being curative1824 in providing relief from disease and illness1825 or restoration to a state of good health.1826 Several informants also mentioned traditional medicine such as Ayurveda,1827 and

Islamic traditional medicine originating from Allah:1828 “In religion healthcare important too. For example, Mussa1829 pain in stomach. Asked Allah ‘what should I do?’ ‘Go to that tree and put some leaf and chewing and you will feel comfortable because I made you and the tree also…’

Mussa felt good.”1830 Healthcare funding was mentioned as health insurance,1831 financial support1832 and as being mainly funded publically through tax.1833 Lastly is medicine,1834 with

settlement of the in India; and by others who adopt a different reckoning to a period between 1400 and 1000 B.C., when the Aryans had settled down in the Panjab] (Williams 2008: 1015).” 1819 D-020515-H-027, DSL-041115-BND-43 1820 J-123014-H-023 1821 ND-042815-S-49 1822 J-121014-H-015, J-123014-H-023, D-020415-J-026, DSL-040615-B-40 1823 DSL-040815-BMD-42 1824 J-111914-JMDNA-005, J-121014-H-015 1825 J-121914-JMD-019 1826 J-122514-J-021 1827 ND-110814-H-001, J-121014-H-015, J-122414-H-020 1828 Arabic for G-d.

1829 Arabic name for Moses. 1830 J-121314-M-016 1831 J-123014-H-023, C-021615-CNA-30 1832 DSL-032515-B-34 1833 J-111914-JMDNA-005 1834 J-120414-J-013, J-121014-H-015, J-122414-H-020, DSL-041115-BND-43

514 one criticizing Western biomedicine: “American medicine nowadays - immediate relief, leave a bad taste…addiction. Discovering new problems from their medicine.”1835

Another couple of answer categories were equal in number (3%) such as that having to do with education from HCPs taking the form of guidance or advice to patients,1836 directions for the purpose of longevity1837 and sexual health education.1838 Helping the sick1839 was another and which was also referred to as caring for others1840 or a system to provide a better life.1841

The last group of answer categories on healthcare with shared popularity among the informants only had a couple of answers each (2%), such as those who held healthcare as associated with healthcare providers; 1842 holistic 1843 or caring for patients emotionally/medically and socially/economically; involving regular checkups1844 to “try to prevent rough edges;”1845 and involving systems with one informant saying that the “health care system - like garage for cars!”1846 and another saying that healthcare is a product of health systems.1847

Again, as with some of the other topics but most prominently here, the outliers grouped together make up the most numerous answer category (25%). Healthcare was variously seen as attention;1848 comfort;1849 causing happiness;1850 minimizing disability;1851 including palliative

1835 ND-110814-H-001 1836 DSL-041115-BND-43 1837 J-122614-H-022 1838 C-021615-CNA-30 1839 DSL-032515-B-34 1840 DSL-042315-BRN-48 1841 DSL-040815-BMD-42 1842 J-120414-J-013, C-022815-C-33 1843 J-111914-JMDNA-005 1844 J-121514-H-017 1845 ND-111014-JPHD-002 1846 J-122414-H-020 1847 C-022815-C-33 1848 J-120414-J-013 1849 J-120414-J-013 1850 J-121914-JMD-019

515 care, 1852 physiotherapy, 1853 scientific research, 1854 home-made remedies such as “mother’s recipes, for example ear-nose-throat - ear mustard oil,1855 and encapsulating both biomedicine for acute issues and traditional medicine for chronic ones;1856 a process through life course rather than event-based;1857 emphasizing mental health as the main cause of physical health in Tibetan contexts; 1858 compassionate care rather than just medication; 1859 help provided by friends/family;1860 and something needed for significant life events, such as birth and death.1861

One informant thought that healthcare is not unique but simply “nothing, routine of life…if do everything in routine it is healthcare.”1862 A few others pointed to problems in healthcare such as language barriers, 1863 physician power over nurses, 1864 and it being a business: “Making money…very negative comment, many benefitted. Healthcare should be free. World manipulated by rich people.”1865

Several unique answers on healthcare related to religion such as doing yoga,1866 going to temple,1867 getting support and “mental help” from a high Lama (something a Tibetan physician thought their patients see as a form of healthcare),1868 and appealing to astrology as a last resort:

1851 D-020415-J-026 1852 J-111914-JMDNA-005 1853 J-122414-H-020 1854 J-121514-H-017 1855 ND-110814-H-001 1856 DSL-041815-BMD-45 1857 J-122514-J-021 1858 DSL-040415-B-39 1859 DSL-041815-BMD-45 1860 J-120914-HNA-014 1861 J-120414-H-012 1862 DSL-042015-S-46 1863 DSL-040815-BMD-42 1864 J-111914-JMDNA-005 1865 DSL-032615-BPHD-35 1866 ND-110814-H-001 1867 D-020515-H-027 1868 DSL-041815-BMD-45

516

“Astrologer śani1869 grah1870/maṅgal1871 grah, ring on hand, stones on hand. For example, not well, can’t find problem, astrologer last resort. Suggest wear a stone.”1872 Lastly, one informant stated that the purpose of maintaining the body is for it to be used “as a medium to do religious activities – purushārthas,” and gave two Sanskrit śloka, or religious verses:1873 sharīr mādyam khalu dharman sādhanam1874 which the informant translated as the“body is a medium for doing religious activities,” and dharam ārthī kām mokṣanan ārogyan mul muktakaam1875 which was translated as “four activities a man needs to perform - purushārth - only on basis of healthy life.”1876 The four activities, purushārtha or life-goals,1877 are contained within the second śloka and are dharma which is religion or duty, artha which is resources or wealth, kāma which is sensual pleasure, and moksha or freedom.1878 Mokṣa could be seen as the activities leading to freedom rather than freedom itself, but some listings of the purushārth give only three and exclude moksha perhaps when defined as a soteriological end-point rather than an activity. Some scholars suggest that moksha was a later addition to purushārth by the “Brahmanical orthodoxy”

1869 Hindi and Sanskrit for planet Saturn (Williams 2008: 1051). 1870 Hindi and Sanskrit (graha) for planet (Williams 2008: 372).

1871 Hindi and Sanskrit (maṅgala) for planet Mars (Williams 2008: 772). The term also means “auspicious (Williams 2008: 772)” in both languages, and a common Indic textual and ritual phrase is sarva maṅgalam, meaning “may all be auspicious.” 1872 D-020515-H-027 1873 Sanskrit for hymn of praise, proverb, maxim, stanza (Williams 2008: 1104).

1874 I have been unable to locate a source for this verse.

1875 I have been unable to locate a source for this verse. 1876 J-112714-J-009 1877 These were discussed earlier in the context of the śāstra texts. 1878 Dharma has been discussed earlier at length. Williams gives fourteen definitions for artha, including, most relevant to the purushārtha, “wealth, property, opulence, money (Williams 2008: 90).” Williams gives twenty definitions for kāma, and again those most relevant as life-goals are “pleasure, enjoyment” and “love, especially sexual love or sensuality (Williams 2008: 271).” Lastly, Williams gives eighteen definitions for mokṣa but in the context of the purushārtha, there is “release from worldly existence or transmigration, final or eternal emancipation (Williams 2008: 835).”

517 of “the Vedic traditions” as a response to the perceived competition with the heterodox śramaṇa movement.1879

In summary, healthcare was most prevalently seen by informants in this study as self- care, institutions, and healthcare provider (HCP) activities along the patient trajectory, which all had the same popularity. These categories were followed in respective order of popularity by prevention, physicians and involving physical and mental aspects of the person.

End-of-life Care

For this final section on key terminology defined by the study informants, all who had an open interview were also asked to define end-of-life (EOL) care (n=40). More than half of those who answered mentioned something to do with helping improve the dying person’s emotional/mental experience (14%). The ways in which this was described were quite various and included boosting morale 1880 through words of encouragement, 1881 giving comfort, 1882 positive reassurance1883 or counsel to reduce worry1884 and anxiety;1885 helping the person have a positive mind1886 which can be done by offering a religious point of view;1887 bringing mental satisfaction1888 and relief,1889 increased well-being1890 and relaxation;1891 and reducing fear1892 or

1879 Siderits 2017:16 1880 J-121914-JMD-019 1881 DSL-032715-B-36 1882 J-120414-J-013 1883 DSL-042115-BRtl-47 1884 DSL-041115-BND-43 1885 DSL-042115-BRtl-47 1886 DSL-040415-B-39 1887 DSL-032715-B-36 1888 DSL-040615-B-40 1889 C-020915-M-028 1890 D-020415-J-026 1891 D-020515-H-027 1892 J-121514-H-017

518 other negative emotions.1893 Several informants spoke of peace of mind1894 or mental calm1895 for the dying person which can be helped by a peaceful atmosphere1896 or calm environment.1897

Next are two answer categories which are almost identical in number (9%) and have to do with religious recitations1898 by others1899 such as clergy1900 which included chanting1901 and prayer1902 (even by proxy),1903 and pain management1904 by making the person as comfortable as possible 1905 with pain relief, 1906 symptom control 1907 or sedation 1908 as needed. 1909 One informant mentioned the lack of pain control in India.1910

The next most abundant answer category contains mentions of family (8%). Some pointed to caregiving done by family1911 and the dying person being surrounded by family,1912 including for the purposes of the patient privately sharing secrets or confidential statements with them.1913 Others spoke of the support families need at the time of a loved-one dying,1914 including social and financial support1915 because of the burdens of high costs of care.1916 One

1893 ND-111014-JPHD-002 1894 ND-111014-JPHD-002, J-112614-J-008, J-120414-H-012, J-120414-J-013, J-121514-H-017 1895 DSL-042315-BRN-48 1896 C-021615-CNA-30 1897 D-011015-J-025 1898 J-112614-J-008, J-123014-H-023, DSL-042115-BRtl-47, J-121314-M-016, C-020915-M-028, DSL-042015-S- 46 1899 DSL-032515-B-34 1900 DSL-040615-B-40 1901 ND-111014-JPHD-002 1902 D-020515-H-027, C-021015-C-029, DSL-041115-BND-43, DSL-041815-BMD-45, C-022815-C-33 1903 D-010615-S-024 1904 J-122414-H-020, DSL-040115-BMD-37, DSL-041815-BMD-45, DSL-042315-BRN-48 1905 DSL-040815-BMD-42, DSL-041815-BMD-45, DSL-042315-BRN-48 1906 J-120414-J-013, J-121914-JMD-019, C-020915-M-028 1907 DSL-040115-BMD-37 1908 C[E]-022315-JW-32 1909 DSL-040715-BMD-41 1910 DSL-042015-S-46 1911 ND-110814-H-001, J-120414-H-012, J-123014-H-023 1912 J-120414-J-013, C[E]-022315-JW-32 1913 C-022815-C-33 1914 DSL-040615-B-40, ND-042815-S-49 1915 J-111914-JMDNA-005 1916 J-111714-M-004

519 informant mentioned care teams respecting the wishes of patients and their families,1917 while another suggested that patients not focus on family or other things1918 in order that they can leave this life more easily. One informant was concerned that more fractured families have led to an increase in institutionalized EOL care: “Families broken. More respect to elders, more happiness.

Buying responsibility (send to nursing home), not Indian culture. If don’t love…parents, will be sent away. Western culture responsible for these problems.”1919

Inner religious practices 1920 was next in number (6%) and contains multifarious examples such as meditating1921 or focusing the mind1922 more on the soul rather than the body, 1923 on deities or one’s Guru, 1924 on remembering G-d, 1925 on bodhicitta 1926 and compassion1927 or on whatever beliefs are particular to the patient.1928

The next four answer categories were almost identical in number (4%) and the first is concerned with physical care1929 or taking care of person1930 such as by washing or bathing.1931

Artificial feeding/hydration1932 was called by one as nutrition management1933 and included the

1917 DSL-040715-BMD-41 1918 DSL-042115-BRtl-47 1919 ND-110814-H-001 1920 DSL-032515-B-34 1921 DSL-042015-S-46 1922 DSL-042115-BRtl-47 1923 ND-111014-JPHD-002, D-011015-J-025 1924 DSL-042115-BRtl-47 1925 DSL-042015-S-46 1926 Literally “the mind of enlightenment” (or “mind of awakening”) with bodhi being Sanskrit for “perfect knowledge or wisdom (by which a man becomes a buddha- or jina-), the illuminated or enlightened intellect (Williams 2008: 734), and citta being Sanskrit for both “the heart, mind” and “intention, aim, wish (Williams 2008: 395).” Bodhicitta, however, is commonly described in Buddhist Northern Schools’ contexts as the highest altruistic wish or motivation, to become enlightened for the sake of all others. 1927 DSL-040415-B-39 1928 DSL-042115-BRtl-47 1929 J-122514-J-021, C-020915-M-028 1930 J-121314-M-016, J-122514-J-021 1931 ND-111014-JPHD-002, DSL-032715-B-36, DSL-041815-BMD-45 1932 DSL-040715-BMD-41, DSL-041815-BMD-45, DSL-042315-BRN-48 1933 DSL-040115-BMD-37

520 reduction of oral intake1934 and preventing fluid overload.1935 Rituals1936 were mentioned directly as such, and caring and support1937 was described by way of love,1938 kind and compassionate care1939 and caring from the heart and not the brain.1940

Four other categories had nearly the same number of answers (3%), such as medicine1941 or medical interventions1942 and even life-saving medical measures.1943 This last one might be surprising since typically within the hospice palliative care rubric, the person or their proxy have decided to stop aggressive medical management. However, as will be explored more fully in chapter three “I have this pain…” End-of-life Models of Care: South Asian Adherent

Perspectives on Pain Management, Hospice Palliative Care and Medical Assistance in Dying

(MAiD), EOL care is provided in almost every medical environment, not just in places dedicated to EOL care. In my clinical practices, as a bedside caregiver and more recently as an ethicist, I have been shocked by how many people and families choose to have every intervention possible even in the face of a grim prognosis with little to no hope of meaningful recovery. Many who choose this do come from the monotheistic sanctity of life traditions, such as this informant who was my sole Indian Jewish study participant. It harkens back to a conference I spoke at years ago with a Rabbi who provides chaplaincy services to Toronto hospitals during which he said, in accordance with the famous line in the Dylan Thomas poem, “we Jews will not go gentle into

1934 ND-111014-JPHD-002 1935 DSL-041815-BMD-45 1936 J-112614-J-008, J-122514-J-021, D-020415-J-026, DSL-040615-B-40, DSL-040715-BMD-41, DSL-041815- BMD-45 1937 DSL-041815-BMD-45, J-121514-H-017, DSL-032715-B-36 1938 C-021615-CNA-30 1939 DSL-032615-BPHD-35 1940 DSL-032615-BPHD-35 1941 ND-111014-JPHD-002, J-122514-J-021, DSL-041715-S-44 1942 D-010615-S-024 1943 C[E]-022315-JW-32

521 that good night.” EOL hospital care1944 was mentioned by several informants, including one who said that hospice is preferred over hospital1945 where there often can be visitation restrictions.1946

Another said that some people boast if they take the dying person or dead body to hospital, even if it is useless, since it is a sign of wealth to be able to even visit a hospital.1947 Lastly are exposure to religious teachings1948 such as by way of a discourse1949 which was given by one informant in Hindi as pravachan,1950 and adjunct therapies such as acupressure,1951 Tibetan oil massage (zati 1952 ), breathing techniques 1953 or “sujok 1954 - Japanese method similar to acupressure… prāṇāyāma 1955 or mudrā1956 (mudrā a higher version of yoga).”1957

1944 ND-110814-H-001, C[E]-022315-JW-32 1945 C-021615-CNA-30 1946 DSL-042015-S-46 1947 DSL-042015-S-46 1948 DSL-032715-B-36, DSL-041815-BMD-45 1949 D-011015-J-025

1950 Pravachana in Sanskrit, translated as “oral instruction, teaching, expounding, exposition, interpretation (Williams 2008: 690).” D-011015-J-025 1951 DSL-041815-BMD-45

1952 Tibetan Wylie: dzati. This translates as “nutmeg” and both Waldo and Yeshe present the substance as “one of...the eight outer principal medicines (Waldo 2011, Yeshe 2011).” Dr. Gyal writes in his book on Tibetan medical dietetics that with “[z]athi ([n]utmeg)…[t]he oil is extracted from it (Gyal 2006: 146),” but doesn’t clarify whether it is used orally, topically or both. It seems from these sources that nutmeg having an oil extract, along with being categorized as an external medicine, lends strength to this informant referring to a form of Tibetan oil massage as dzati. That said, I have not been able to confirm nutmeg oil being used in Tibetan massage beyond making these logical connections. As well, it is another term, Kunye (Tibetan Wylie: bsku mnye), which seems to be a more commonly used term for “oil massage (Yeshe 2011),” from connecting the words bsku for “ointment (Yeshe 2011)” and mnye for “rub, massage, work in (Waldo 2011).” DSL-032715-B-36 1953 J-122514-J-021

1954 Sujog actually seems to be Korean for “limb (Zkorean English/Korean Dictionary 2018),” with the equivalent Japanese term being teashi which means both “hands and feet” and “limbs (Jisho English/Japanese Dictionary 2012).

1955 Sanskrit for “breath-exercises (Williams 2008: 706),” “practice of regulating the airs within the body (Vedabase SB 5.20.27: Śrīmad-Bhāgavatam (Bhāgavata Purāṇa), Canto 5: The Creative Impetus, SB 5.20: Studying the Structure of the Universe.),” and “yogic system of controlling the breath (Vedabase SB 11.19.36-39: Śrīmad-Bhāgavatam (Bhāgavata Purāṇa), Canto 11: General History, SB 11.19: The Perfection of Spiritual Knowledge).”

1956 Williams gives sixteen meanings for the term, and among those can be translated from Sanskrit as “seal (Williams 2008: 822)” or, most appropriately here, the “[n]ame of particular positions or intertwinings of the fingers

522

Four answer categories had only several answers each (2%) and includes estate planning;1958 the non-hastening of death1959 by preventing oversedation1960 or reducing sedation and increasing alertness;1961 providing company1962 such as by speaking to the dying person;1963 some criticism of EOL care in India by one informant whose concerns include the lack of education on EOL matters to laypeople,1964 a paucity of advance care planning1965 and that EOL care is generally “non-existent…no proper…arrangements, facilities for facilitating end of life.1966”

The last four categories only contain a couple of answers each (1%) and among them are respecting wishes1967 of the autonomous dying patient;1968 helping the dying person give1969 or ask for forgiveness;1970 giving charity by proxy such as by giving “dān1971 in their name”1972 or

“special food to poor on behalf of the deceased;”1973 and helping the dying person reduce

(24 in number, commonly practised in religious worship (Williams 2008: 822),” Although typically involving the fingers and hands, it seems that mudrā can involve other parts of the body, as this informant alludes to by associating it with yoga. 1957 J-122514-J-021 1958 D-020515-H-027, C-022815-C-33, DSL-041115-BND-43 1959 DSL-040715-BMD-41 1960 DSL-040815-BMD-42 1961 DSL-041815-BMD-45 1962 C-020915-M-028, DSL-032715-B-36 1963 C-021015-C-029 1964 J-111914-JMDNA-005 1965 J-111914-JMDNA-005 1966 J-111914-JMDNA-005 1967 DSL-040715-BMD-41 1968 J-122614-H-022 1969 C-021015-C-029 1970 ND-111014-JPHD-002 1971 Hindi for giving, donation, offering, alms (McGregor 1993: 490) and, similarly, Sanskrit (dāna) for giving, donation, gift (Williams 2008: 474). 1972 D-020515-H-027 1973 J-111714-M-004

523 attachment to material things1974 including family which leads to the admonition in some

Buddhist traditions to avoid openly grieving in front of the dying person.1975

More than half of the study participants were outliers with unique views on the topic of

EOL care, and made up the most numerous answer category (15%). As was likely noticed by the reader earlier in this section, informants gave answers that had to do with both the dying person themselves or those around them, such as family and care providers. For this section, I will first give those aspects of EOL care that involve only the dying person themselves, such as reflecting on their life,1976 accepting of death,1977 cultivating mental purity,1978 making religious offerings such as incense,1979 stopping certain medical treatments such as blood products and blood pressure medication,1980 and for the best EOL experience, living a good and healthy life before one reaches the dying state.1981 Next are clustered those unique answers on EOL care that involve those other than the dying person, such as: it being a responsibility owed to others;1982 being humane (insāniyat);1983 HCPs1984 and informal caregivers;1985 offering food that the dying person enjoys;1986 physiotherapy but not limited only to what physiotherapists do;1987 human touch;1988 quality of life1989 and dignity;1990 having patience;1991 traditional medicine;1992 wound

1974 DSL-040615-B-40 1975 DSL-042115-BRtl-47 1976 J-120414-H-012 1977 J-121514-H-017 1978 J-112614-J-008 1979 D-011015-J-025 1980 DSL-040115-BMD-37 1981 DSL-032615-BPHD-35 1982 J-121014-H-015

1983 Hindi for “humanitarian (Collins Hindi-English Dictionary, 2018).” J-121014-H-015 1984 J-122514-J-021 1985 J-120214-M-011 1986 DSL-032715-B-36 1987 J-122514-J-021 1988 J-123014-H-023 1989 J-122414-H-020 1990 J-122414-H-020

524 care;1993 educating the dying person on their on condition;1994 feeding;1995 and both temporal and spiritual activities1996 such as exposure to religious images (for regular people as opposed to advanced scholar-practitioners),1997 and spiritual care.1998

In summary, when defining end-of-life care, the most popular answers had to do with the well-being of the dying person, religious recitations/prayer, pain management, family, inner religious practices and physical care.

1991 DSL-032615-BPHD-35 1992 DSL-040715-BMD-41 1993 DSL-041815-BMD-45 1994 C-022815-C-33 1995 DSL-041815-BMD-45 1996 C-022815-C-33 1997 DSL-040415-B-39 1998 C-020915-M-028

525

Appendix E: List of Findings and Recommendations

Part 1: Highlights of Findings on End-of-life Decision-making Among Select Indian and Tibetan Religious Adherents

End-of-life Decision-making

Finding 1 - EOL decision-makers (general): When considering EOL decision-makers in general, informants thought that there is mostly collaboration between the patient, their family and healthcare providers. The next most popular configuration was that physicians make EOL decisions on behalf of the patient. This was followed by a tendency to think that the family and physician make EOL decisions together. Only the collaborative approach involves the patient in EOL decisions, the others being proxy decisions.

Finding 2 - EOL decision makers (personal): For themselves, informants most preferred autonomous EOL decision-making. This was followed by an equal preference for EOL decisions being made by the patient together with their family, or the doctor and the healthcare team making decisions by proxy, or collaboration between the patient, family and healthcare providers.

Finding 3 - EOL decision making processes: When discussing processes of EOL decision-making, informants mainly emphasized wanting healthcare teams to contact family first; the importance of privacy; increased HCP involvement if the patient is alone; collaboration with HCP leadership; and using a personalized approach to care.

Finding 4 - EOL care preferences: Informants overall thought that comfort supersedes length of life. Informants also held that after brain-death, life-support and being medically maintained was not worthwhile for the sake of merely lengthening life. There was also a preference to be at home while dying.

Finding 5 - Advance Care Planning documentation: Few to no informants possess or see in their practice either advance care directives or documents appointing a decision- making representative (such as a Power of Attorney), but there was a close split between those who had heard of such documents and those who had not. Among non-HCPs, documents appointing a decision-making representative are better known than advance care directive documents.

Religion and End-of-life Decision-making

Finding 6 - Religion impacting EOL decision-making (individual): More than half of informants felt that religion does indeed influence people’s EOL decision making in general.

526

Finding 7 - Religion impacting EOL decision-making (HCPs): In verbal answers, almost half of informants felt that religion does not influence HCPs in healthcare and EOL decision-making, but informants were ambiguous on this matter in the questionnaire. Finding 8 - How informants understood “EOL decision-making”: Informants in this study spent a great deal of time discussing such things as: the quality of care; creating an environment conducive to care goals; lifestyle; and emotional states to name but a few of their concerns.

Finding 9 - How informants understood EOL decision-making being influenced by religion: Some informants took “influenced by religion” to mean such things as: how the person treats others; what actions they would conscientiously object to; religious interventions; motivation; positive emotions or concern towards patients; ability to endure difficulties (such as with patience or forbearance); reaping moral or karmic benefit; how to approach patients of different religious dispositions; how religion excludes medical science; discrimination or acceptance based on religion; requesting divine intercession in curing patients; the influence of patients’ religious views on HCPs; the presence or absence of religious advice within medical advice; HCPs’ quality as distinct from adherence to certain religion; and the ways in which religious practice, or even mere exposure, can be helpful to the person who is sick or dying.

Withholding, Delivering and Receiving Difficult Medical Information, or “bad news”

Finding 10 - Receiving difficult healthcare information: perceived detriments to patients: Multiple informants mentioned medical bad news potentially bringing worry to patients and causing health status decline.

Finding 11 - Receiving difficult healthcare information: perceived detriments to families: The main concern of informants who were concerned with families receiving medical bad news is the distress or worry it could cause them.

Finding 12 - Receiving difficult healthcare information: perceived benefits to patients: Multiple informants mentioned death-preparedness as the main benefit to receiving a poor diagnosis or grim prognosis.

Recommendation 1 – Ask the patient about their preferences for medical information sharing: Either as a preemptive strategy, or at least when it is unclear whether certain medical information should be shared with the patient or their loved-ones or not, it is recommended to ask the capable patient what types of information they would like to receive or not. To avoid undue distress, it is better to have such conversations early and strategically so there is not a presumption or inference that there already is bad news to share.

527

Ritual Deaths

Recommendation 2 - Protecting sallekhanā voluntariness: The potential for pressure to not eat and drink before death, even coercion towards this, is a genuine concern whether real or perceived, intended or unintended, and must be put in check. To protect both hard and soft voluntariness (preventing external coercion and internal pressure), it is recommended that voluntariness should be tested in a formal manner. This can be done by a medical professional, or could well be done instead by a trained member of the Jain community in case this is more acceptable to members or leaders in the faith. The results should be such that it can be reportable to a review body if such were to exist, a coroner if investigated or to a court if litigated.

Recommendation 3 - Assessing sallekhanā capacity: A mental capacity assessment for cadidates seeking to perform sallekhanā is recommended, both for laypeople and monastics, and frequent visits to the person undergoing sallekhanā as a way to constantly check both capacity and consent, and to allow for the person to change their mind. It would not be necessary for the person determining capacity to be a physician. Capacity determinations can potentially be performed by trained capacity assessors who are non- physician healthcare professionals, as is done is some jurisdictions. The results should be such that it can be reportable to a review body if such were to exist, a coroner if investigated or to a court if litigated.

Recommendation 4 - Ensuring sallekhanā consenting: This is a strong recommendation against waiving consent for sallekhanā, or involuntary sallekhanā, under any circumstances. Further, substituted consent by proxy is strongly recommend against for people who are incapable from whatever cause, be it cognitive interferences, unconsciousness or otherwise.

Finding 13 - Buddhist discipline texts distinguish between active killing and withdrawal of medical treatment: Commentary on the Pali Vinaya shows that of the five components of rules of monastic conduct (intention, perception, object, effort, result), the factor of effort is missing in not providing a particular medical intervention. As well, intention with regard to inaction is made irrelevant by these discipline texts. Even refusing to provide any medical care to a fellow monastic is merely a breach of conduct and not a breach of precepts, a minor infraction requiring only confession to repair it. This applies not only to those who would provide care but also to the person who would receive care, or nutrition and hydration. VSED for a Buddhist monastic, whether ill or not and even with the wish to die, incurs only a minor penalty of conduct, not precepts. However, if the monastic is ill beyond the point of recovery and a burden on the community, or close to specific spiritual attainments, it is ethically permissible to forego any interventions including eating and drinking. Although with regard to monastic relations, which can be seen as the strictest iterations of Buddhist conduct, the principle of omission or foregoing of interventions as permissible can still be of guidance in lay contexts as well.

528

Finding 14 - Possible causes of criticism and legal challenges towards Jain sallekhanā but not towards Buddhist tukdam: This study identifies five potential areas that could explain why Jain fasting and immobilization continues to be contested in India whereas an analogous Buddhist practice has not been similarly contested. (1) As an emic safeguard, permission is required from religious leadership before Jain sallekhanā can be undertaken, and there are times when the candidate is denied permission because the practice is considered inappropriate for their circumstances. There is no corresponding permission process for Buddhist tukdam. (2) Buddhist tukdam is necessarily verifiable by those inside and outside of the tradition by way of observable and measurable unusual physical signs, considered by Buddhists as proof of attainments. This connects to the previous point on a lack of permission for this practice since it is not considered tukdam unless there are such signs as a lack of rigor mortis after clinical death, and so a practitioner would not enter into the sate if they were unable to do so. There is mention of bodily lustre during sallekhanā in Jain sources but no corresponding anecdotal evidence, whereas there is much anecdotal evidence (again, necessarily so to label the practice) on a life-like lack of decay etc. after clinical death in Buddhist tukdam. (3) Someone entering into Jain sallekhanā is often accompanied by much advance publicity, such as with newspaper spreads by families or devotees, but there is usually no publicity in Buddhist tukdam (except perhaps word-of-mouth in inner circles) until completed. (4) Jain sallekhanā is known as it is happening and is often referred to as a “fast unto death,” terminology which puts the fast and death into a causal relationship. In Buddhist traditions, not just with Tibetan tukdam, a meditation that ends in death is usually not known to be the final meditation (or “death meditation”) until it is finished and is labeled as such only retroactively. (5) Jains are a disproportionately wealthy indigenous minority religious group, making them a possible target of criticism as compared to refugee Tibetans.

End-of-life Care Models

Pain Management

Finding 15 - Opioid accessibility geographically variable but improving in India: Informants shared that access to pain medication by both institutions and patients is easier in some parts of South India in contrast to some regions in North India, but a 2014 amendment to the Narcotic Drugs and Psychotropic Substances (NDPS) Act has removed some system-level obstacles.

Finding 16 - Non-pharmacological pain control: Informants mentioned several adjunct means of pain control, such as a shift in focus from the physical to the metaphysical, prayer, fellowship and mere companionship.

529

Finding 17 - HCPs and non-HCPs disagree on pain management: HCP informants felt that their patients cannot afford pain medication and are unafraid of addiction, both of which in contrast to the views of non-HCP respondents.

Recommendation 5 - Behavioural pain assessments: It is recommended to have training in and implementation of behavioural pain assessments as a general standard of care in healthcare settings, to ensure the option of good pain management for those that might deny pain while still being in pain, and especially for those patients who are unable to communicate.

Hospice Palliative Care

Finding 18 - Low awareness of hospice palliative care: Some informants had heard of “end-of-life care,” but most indicated that they had not heard of either hospice or palliative care and indicated that such a type of dedicated care for the dying is not currently prevalent in India.

Finding 19 - Religious environment for dying preferred: Several informants expressed both esteem and a preference for religious hospice or an environment conducive to religious practice while dying. There was some emphasis on being in undistracted isolation, something supported by some Buddhist and Jain texts.

Finding 20 - Aversion to hospice palliative care: Multiple informants were averse to ordinary hospice palliative care settings with the thought that it can negatively impact the dying person to know they are in a place dedicated to dying.

Finding 21 - More palliative support in hospital versus at home: Informants from both north and south India mentioned that palliating in hospital might be better than at home because of the supports of trained staff.

Finding 22 - HCPs and non-HCPs disagree on hospice palliative care: HCP informants felt that their patients would want hospice palliative care but could not afford it, which contrasts the views of non-HCP respondents.

Finding 23 - Dying at home preferred: Among all the study cohorts, most would prefer to die at home.

Medical Assistance in Dying (MAiD): South Asian Religious Views

Finding 23 - Monotheistic adherents’ opposition to MAiD: Monotheistic respondents were the most numerous in discussing MAiD, referred to as “euthanasia” or “mercy killing,” and were also opposed to it.

530

Finding 24 - Buddhism and MAiD: Although Buddhist discipline texts (Vinaya) prohibit against hastening another’s death, commissioning someone to do so, recommending means for euthanasia, and praising death, there also appear precedents of realized masters with illness who ended their lives without fault in discipline or untoward karmic results. H.H. the Karmapa in-person encouraged against a hard and fast position in favour or against MAiD. For Buddhists, then, MAiD permissibility in not impossible but would likely be dependent on the spiritual development of the adherent and a requirement that they administer the lethal dose to themselves.

Finding 25 – Hinduism and MAiD: Historically, there are many types of religious voluntary deaths in Hinduism, including those that actively end life such as immolation, and those which are passive such as fasting. Although two active means of suicide, drowning and widow deaths, have been made illegal in India and suicide being largely frowned upon in Hinduism, some Shakta tantric sources give conditions for yogic death which overlap somewhat both with the four “I”s of MAiD (incurable, irreversible, intolerable, imminent death) and the eligibility requirements of Jain sallekhanā.

Finding 26 - Jainism and MAiD: Jainism has the most strict requirements around religious voluntary death and basically only accepts sallekhanā as permissible. Although not representative, a small group of Jains and scholars, however, left open a small theoretical possibility for MAiD under extreme circumstances of intolerable suffering while simultaneously prohibiting biological interferences, thereby precluding MAiD.