Religious Understandings of a Good Death */)041*$&1"--*"5*7&$"3& &%*5&% #: )"30-%$08"3% ,&--**45"+%6)"3 Religious Understandings of a Good Death in Hospice Palliative Care SUNY series in Religious Studies ————— Harold Coward, editor Religious Understandings of a Good Death in Hospice Palliative Care Edited by Harold Coward and Kelli I. Stajduhar Cover art by Susan Coward Published by State University of New York Press, Albany © 2012 State University of New York All rights reserved Printed in the United States of America No part of this book may be used or reproduced in any manner whatsoever without written permission. No part of this book may be stored in a retrieval system or transmitted in any form or by any means including electronic, electrostatic, magnetic tape, mechanical, photocopying, recording, or otherwise without the prior permission in writing of the publisher. For information, contact State University of New York Press, Albany, NY www.sunypress.edu Production by Eileen Meehan Marketing by Michael Campochiaro Library of Congress Cataloging-in-Publication Data Religious understandings of a good death in hospice palliative care / edited by Harold Coward and Kelli I. Stajduhar. p. cm. — (SUNY series in religious studies) Includes bibliographical references and index. ISBN 978-1-4384-4273-0 (hardcover : alk. paper) 1. Terminal care—Religious aspects. I. Coward, Harold G. II. Stajduhar, Kelli I. R726.8.R437 2012 362.17'5—dc23 2011032337 10 9 8 7 6 5 4 3 2 1 Contents Acknowledgments vii Introduction 1 Harold Coward and Kelli I. Stajduhar Part I Religious Understandings of a Good Death 1 Cicely Saunders and the Development of Hospice Palliative Care 11 Michael Wright and David Clark 2 “Like a Ripe Fruit Separating Effortlessly from Its Vine” Religious Understandings of a Good Death: Hinduism 29 Anantanand Rambachan 3 Welcoming an Old Friend: Buddhist Perspectives on Good Death 51 Anne Bruce 4 Muslim Perspectives on a Good Death in Hospice and End-of-Life Care 77 Earle Waugh 5 Tradition and Change in Jewish Ideals Regarding a “Good” Death 99 Norman Ravvin vi Contents 6 Dying Well in Christianity 123 Janet Soskice 7 Chinese Religions and Hospice Care 145 Edwin C. Hui and Danny C. Leung Part II Case Studies 8 Buddhist Hospice Care in Thailand 167 Robert Florida and Pinit Ratanakul 9 The Ugandan Way of Living and Dying 191 Michael L. Hadley and Godfrey Agupio 10 Punjabi Extended Family Hospice Care 211 Kamala Elizabeth Nayar 11 Seeking Physical, Cultural, Ethical, and Spiritual “Safe Space” for a Good Death: The Experience of Indigenous Peoples in Accessing Hospice Care 231 Joseph M. Kaufert, Rhonda Wiebe, Margaret Lavallee, Patricia A. Kaufert 12 Caring for Children in Hospice and Palliative Care: The Spiritual/Religious Dimension 257 Betty Davies and Thomas Attig 13 Interfaith Chaplaincy in Hospice Palliative Care 277 Kelli I. Stajduhar and Coby Tschanz Conclusion 297 Harold Coward and Kelli I. Stajduhar Glossary of Terms and Abbreviations 317 Lee Blanding Contributors 327 Index 333 Acknowledgments This book is a joint project of the Centre for Studies in Religion and Society and the Centre on Aging at the University of Victoria, Canada. Authors were recruited and then met to present first drafts of their chap- ters at a seminar hosted by the Centre for Studies in Religion and Society in November 2009. Faculty, graduate students, and hospice palliative care clinicians (Dr. Michael Downing and Ms. Kathy Bodell) in Victoria and Vancouver attended and helped with the critique of draft chapters. Authors then revised their chapter for presentation in this volume. Funding for this research and book project was provided by the Canadian Institutes of Health Research, Ottawa. Special thanks are due to June Thomson for her assistance with library research and to Leslie Kenny (administrator) and Rina Langford-Kimmett (secretary) of the Cen- tre for Studies in Religion and Society for organizing the project meeting and preparing the manuscript for publication. The editors are grateful to Michael Hadley for editing help he provided with one of the chapters. At the Centre on Aging Shelly Waskiewich gave valuable assistance in prepar- ing and submitting our grant application. We also thank Julie Lachance, senior policy analyst at Health Canada, Ottawa, for her encouragement and critical advice throughout the research and writing process. The drawing on the cover of the book is by Susan Coward, who, in addition to being Harold Coward’s daughter, is an artist, a longtime hospice volunteer, and now a hospice nurse. She is to be thanked for having sparked Harold’s interest in hospice palliative care, which has resulted in this book. Harold Coward and Kelli I. Stajduhar vii Introduction Harold Coward Kelli I. Stajduhar In the 1960s in London, England, Cicely Saunders introduced a new way of treating the terminally ill, which she called “hospice care.” Saunders, a trained nurse, social worker, and medical doctor, held that humans should be able to die with dignity and at peace. This viewpoint originated from her medical experience as well as her religious commitment as a Christian. The religious basis of hospice care permeates Saunders’s whole approach to the terminally ill, and her vision resulted in the founding of St. Christopher’s Hospice in 1967 in London. There, Saunders developed a program of care for the dying based on three key principles: pain control; a family or community environment; and an engagement with the dying person’s most deeply rooted spirituality. Although the hospice movement began in a Christian context, it was clear from the start that there was to be no “forcing of religion,” and openness to all religious traditions was encouraged. While the first two of Saunders’s principles have been well studied, the third, engagement with a person’s most deeply rooted spirituality or religion, has not been. Thus, the focus of this book is on the religious understandings of a “good death” in hospice care. Leading scholars of the major religious traditions will formulate their own understanding of a good death, specifically with regard to the “spiritual pain” that often parallels and accompanies “physical pain” in hospice care. These understandings are formulated in terms accessible to people from different intellectual, social, and religious traditions. To ensure that our answers go beyond the theoretical level, a series of real-life case studies from different cultures, religions, and medical challenges are included. 1 2 Religious Understandings of a Good Death in Hospice Palliative Care Saunders’s biographer (du Boulay 2007) notes that the hospice movement, which Saunders founded, combines the best care that medicine can provide together with an engagement with the dying person’s most deeply held spiritual understandings. Saunders uses the term spirituality to refer to a person’s individual experience within a religious tradition such as Christianity or Buddhism, taking into account its various denominations and institutionalized forms. In this study, we will follow Saunders’s approach. “Religious tradition” includes the institutional forms of a religion, as well as an individual’s experience within that religious tradition. A person’s spirituality is therefore shaped by the interplay between the institutional vehicle and a particular, individual experience. Throughout, we prefer the term religious tradition rather than religion to signal our recognition that the major religious traditions do not have a single theological, cultural, or institutional identity. Rather, they are highly diverse, and their variety and internal differences will be taken into account throughout. We do not assume that an atheist, agnostic, or someone practicing spirituality outside a religious tradition cannot die “with dignity and peace.” This increasingly large group of people (especially in North America; Garces-Foley 2003) also needs to be dealt with in regard to hospice care—which we have planned as a second volume. This book focuses on followers of religious traditions such as Buddhism, Judaism, and Christianity and their understanding of a good death in hospice care—a large enough project in and of itself. The issue of atheist/agnostic/secular spirituality is also a large and important project and needs to be dealt with separately. The hospice movement began in an Anglo-Christian context and subsequently spread to North America and around the world. In the process, much attention was given to the medical and community requirements for hospice care. Since the early 1980s however, little has been written about the religious dimension, even though this continues to be important in practice. The most effective study of how death is treated by the major religious traditions is Facing Death: Where Culture, Religion, and Medicine Meet (Spiro, McCrea Curnen, and Wandel 1996). Part 2 of the volume, “Framing Death: Cultural and Religious Responses,” contains excellent chapters on a good death in the Hindu, Jewish, Chinese, Islamic, and Roman Catholic traditions, yet these interesting chapters do not consider hospice care. Within the hospice movement itself, the survey by Saunders and Kastenbaum (1997) of the “state of the art” of hospice development in various cultures and countries around Introduction 3 the world barely mentions religion. In summary, our literature review shows that there is no systematic analysis of how to resolve spiritual pain in the achievement of a good death in hospice care.1 This, then, is our research question: What are the religious understandings of a good death in hospice palliative care? This study fills a significant gap in knowledge and will be an essential tool for the training of doctors, nurses, social workers, psychologists, chaplains, and volunteers for work in hospice care in Canada and worldwide. The Place of Religion in the Modern Hospice Movement and the Concept of “Total Pain” Writings during the 1970s and 1980s on the formation of the modern hospice movement tended to describe its religious dimension exclusively with reference to Christianity, with the Church of England as a major player (du Boulay 2007).