Religion, Medicine, 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 Buddhism, Hinduism and Jainism, 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 fasting 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 pain management, hospice palliative care 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: Delhi, Dharamsala and Jaipur in North India, and Cochin in South India. 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 heart. 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 intensive care unit. 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.