[NOTE: The original 1992 book is no longer in print and is available only in libraries. This is the revised (August 1995) version with only minor revisions to the original text and the addition of material from the Senate of Canada's report of the Special Senate Committee on Euthanasia and Assisted Suicide.  This revised edition is only available through this web site for free reading or as an ebook. Revisions from the original text are inserted within square [] brackets.


Dying for Care: Hospice Care or Euthanasia


"For all those concerned for the dying, this book is an essential guide...for all those who think about their own death, this is a comprehensive study of the comforts (and lack of comforts) that exist today."    

June Callwood



by Harry van Bommel


I hope we restore society's sense of the value of life. We must restore the joy in caring for people who are dying.


Dorothy C.H. Ley, M.D., F.R.C.P.(C), F.A.C.P.

Founder and Past President of the Canadian Palliative Care Foundation


This book is dedicated to all the family members, friends, volunteers and health care professionals who provide the spirit and knowledge of hospice care to people who have a terminal or life-threatening illness. Hospice is not a place or a program but a philosophy of loving care. Those who practice this caring philosophy deserve our support and our gratitude.


This book is written with loving thanks to Janet Klees who encourages, supports and edits all my writing.

Dying for Care

Hospice Care or Euthanasia


[with revisions and additions [in square brackets] made August 30, 1995

and available only through Harry van Bommel's website: www.legacies.ca and www.carelibrary.com]



Harry van Bommel


NC Press Limited

Toronto, 1992


PSD Consultants Inc.

Toronto, 1995



To contact author for speaking engagements, write or call:


PSD Consultants

11 Miniot Circle

Scarborough, ON  M1K 2K1

(416) 264 4665


© Harry van Bommel 1992, 1995

No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form, or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of PSD Consultants.


Canadian Cataloguing in Publication Data


van Bommel, Harry

  Dying for Care


Includes bibliographical references and index.

ISBN 1-055021-073-4


1. Hospice care - Canada

2. Hospices (Terminal care) - CanadaI. Title

3. Euthanasia - Canada


R726.8 V351992362.1'75C92-093513-3



We would like to thank the Ontario Arts Council, the Ontario Publishing Centre, the Ontario Ministry of Culture and Communications, and the Canada Council for their assistance in the production of this book.


Printed and bound in Canada


Author's Note


In writing a book on hospice care and euthanasia I was concerned with the needs of two difference audiences who might read this book: the general public and people in the field of hospice care. I have chosen to concentrate first on people who can make decisions to improve Canadian hospice care locally, provincially and nationally. These people include members of the general public who already are interested in hospice care, hospice board members, professional and volunteer caregivers, government policy makers and people who fund hospice care. The book remains relevant, however, to all people interested in hospice care and euthanasia. And, of course, the individual decisions we all make will ultimately have a great impact on the future of Canadian hospice care.


I have relied extensively on information provided by palliative caregivers and other experts in hospice care and euthanasia through questionnaires they answered. When reading their thoughts I recommend you also look up their names in the Index so that you can read all of their other quotes in this book and put their comments into context.


In this book the terms:


Palliative care and hospice care are both used to describe the active and loving supports (physical, emotional, spiritual and informational) given people who have a terminal or life-threatening illness. Both terms are used across Canada to represent care provided in the community, in hospitals, and in free-standing hospice facilities.


Family is used throughout this book to include one's closest friends.


Patient and client are used throughout to mean anyone who has a terminal or life-threatening illness and who is receiving some kind of hospice care support.


People with a terminal illness refers to those who are generally expected to live less than six to twelve months. Life-threatening illness refers to such diseases as end-stage heart disease, AIDS, and some neuromuscular diseases. People with these life-threatening illnesses have periods where their lives may end unexpectedly due to complications but they are also likely to live relatively healthy lives for many years.


I would like to thank the Journal of Palliative for permission to reprint large portions of the following articles:


Roy, David J. "Euthanasia -- Taking a Stand." Journal of Palliative Care. 6:1990(1); 3-5.


Roy, David J. "Euthanasia -- Where to Go After Taking a Stand." Journal of Palliative Care. 6:1990(2); 3-5.


I would also like to thank Knoll Pharmaceuticals for permission to reproduce large portions of the following article for Chapter 5 of this book:

Harry van Bommel. "Palliative Care Standards -- Who Decides?" Pain Management Newsletter edited by Barry R. Ashpole. Markham, Ontario: Knoll Pharmaceuticals Canada, 1991;4(3):3-5.


[I would like to thank the Senate of Canada for their permission to reproduce from their report their complete set of recommendations regarding palliative care, euthanasia and assisted suicide:


Report of the Special Senate Committee on Euthanasia and Assisted Suicide: Of Life and Death. (June 1995). Senate of Canada and Ministry of Supply and Services Canada.]


Acknowledgements


Caroline Walker and Cathleen Kneen of NC Press have been instrumental in making sure this book was published. Their commitment to Canadian authors and social justice issues are a credit to the Canadian publishing industry. I also appreciate the encouragement given me by the members of the editorial board of NC Press during the development of this book.


I would like to thank Robert Shipley for his invaluable assistance. My thanks also to the Board and members of Trinity Hospice Toronto for their support and encouragement.


I wanted this book to reflect not just my own perspectives but also the wide range of opinions on the issues of hospice care and euthanasia in Canada. I sent questionnaires to some of Canada's leading palliative care practitioners (both professionals and volunteers) to get their thoughts and beliefs about hospice care and euthanasia. I am most grateful to those able to respond within the short time period they were given for their insights and for their efforts to help educate Canadians about these important issues. The expansion of Canadian hospice care and the euthanasia debate desperately need their opinions and perspectives. I feel privileged to read their compassion and commitment towards patients and families. I hope the readers will too. Their comments reflect their personal ideas and beliefs and do not necessarily reflect the policies of the organizations with which they are associated.


There were several anonymous submissions and I have respected their request for anonymity. My gratitude to them is just as real as to:


Heather M. Balfour, Executive Director, Community Hospice Association of Ontario; Anne Bell, Executive Director, Island Hospice Association (P.E.I.); Laurie Bennett, Executive Director, Hospice of Peel, Inc.;

A group of Brockville, Ontario practitioners: Janis Brown, Palliative Care Consult Nurse; Cheryl Chapman, Community Outreach Co-ordinator; Shirley Cooper, Bereavement Co-ordinator; Barbara Noonan, Palliative Care Nurse Consultant; Wilma O'Connell, Palliative Care Program Director; Gertrude Paul, Palliative Care Consult Nurse; and Sandra Thompson, Palliative Care Consult Nurse; Carol Derbyshire, Executive Director, Hospice of Windsor; Dr. Louis Dionne, Director General of Maison Michel Sarrazin (Sillery, Quebec); Rev. Sally Eaton, Staff Chaplain, The Wellesley Hospital, Toronto;

Linda Gilpin, R.N., Coordinator of Palliative Care, North York General Hospital; Larry Grossman, Physician Manager, Palliative Care Program, Scarborough Grace Hospital; Joan Henderson, President, Hospice King; Elizabeth Latimer, M.D., Director of Palliative Care, Hamilton Civic Hospital; Dorothy C.H. Ley, MD, FRCP(C), FACP,

Founder and Past President of the Canadian Palliative Care Foundation; Cecile Lynes, Co-ordinator, Toronto Citizen Advocacy; Evelyn MacKay, former nurse, therapeutic touch practitioner, palliative care volunteer and teacher; Jackie MacKenzie, Executive Director, Hospice of London; Tom Malcomson, Professor, George Brown College and Member of the Southern Ontario Training Group; Balfour Mount, MD, FRCS(S), Professor of Palliative Medicine and Director of Palliative Care Medicine, McGill University; Barbara O'Connor, Executive Director, The Hospice of All Saints (Ottawa); Joanne C. Oosterhuis-Giliam, Clinical Director, Hopewell Children's Homes; Catherine A. Rakchaev, R.N., CEO, The Dorothy Ley Hospice; David J. Roy, BA(Math), STB, STL, PhL, Dr Theol, Director of the Center for Bioethics, Clinical Research Institute of Montreal; Dr. Margaret R. Scott, Associate Professor of Medicine, Memorial University of Newfoundland and Provincial Consultant, Palliative Care, Newfoundland Cancer Treatment and Research Foundation; Marilynne Seguin, Executive Director, Dying With Dignity; Trinity Hospice Toronto members: Elaine Hall, Resource Person; Beth Pelton, Co-ordinator; and Pam Leeb, Board Member; Steven Waring, Palliative Care Volunteer, Hospice Dufferin (Orangeville, Ontario); Virginia Clark Weir, Manager, Continuing and Palliative Care, Scarborough Grace Hospital; Wellington Hospice Members: Walter Boos, President; Jackson E. Mathieu, M.D., Medical Director; Barbara Plunkett, Coordinator; Wolf Wolfensberger, Professor, Syracuse University Division of Special Education and Rehabilitation, Director, Training Institute for Human Service Planning and developer of the PASSING Evaluation Tool for Human Services.


I would like to thank the following people for providing up-to-date information on federal, provincial and territorial government health plans for the next ten years: Primrose Bishop, Director, Hospital Services Division, Department of Health, Government of Newfoundland and Labrador; Lynn Currie, Lifestyle Educator, Department of Health and Fitness, Province of Nova Scotia; Susi Derrah, Senior Researcher, Premier's Council on Health Strategy, Province of New Brunswick; M. Jane Fulton, Ph.D., Professor of Strategic Management and Health Policy, University of Ottawa; Joy Kajiwara, Director, Continuing Care, Yukon Health and Social Services; Bruno Lortie, Political Counsellor, Ministry of Health; Sylvia Mandryk, RN, B.ScN., Policy Officer, Long Term Care/Rehabilitation Section, Community Health Division, Government of the Northwest Territories; Sandra McKenzie, Director, Community Health, Government of the Northwest Territories; Diana Morrison, Researcher, Cancer 2000; Andre Nolet, Consultant, Health Administration, Institutional and Professional Services, Health and Welfare Canada; Anna Rose Spina, Ontario Ministry of Health, Institutional Health Division, Policy and Support Unit; Chris Tocher, Health Information Line, Ministry of Health, Communications and Education, Province of British Columbia.


Several people helped review the first draft of this book. I am grateful for their insight, grammatical expertise and generosity of spirit. Their assistance has helped make this book more readable and useful. Any errors remain my own. My sincere thanks to: Barry Ashpole, Kathy Bowden, Sally Eaton, Norman Endicott, Maureen Hennessy, Tom Malcomson, and Michael Roman.


My thanks, as always, to Janet Klees for making it possible for me to take time off to write this book. Her encouragement, editorial suggestions and insights improve everything I write.


Introduction


For most people in North America the thought of killing themselves or having a family member, friend or doctor help them to die goes against their personal beliefs.


In 1991 the book Final Exit was published to help people who are dying understand the "practicalities of self-deliverance [suicide] and assisted suicide." The hard cover book sold over 500,000 its first year (20,000 copies in Canada). I believe the popularity of Final Exit is due to the real fear that North Americans have about dying in pain with tubes stuck in many parts of their bodies as they await the end in an intensive care unit or in a hospital ward. The publication of such a book demands a public response -- not just to speak either for or against euthanasia, but to put euthanasia into the context of the needs of people who have a terminal or life-threatening illness. Dying for Care is one public response.


We must increase public awareness of all the choices available to people who are dying, especially the choice of hospice care. That is to say that we must increase the physical, emotional, spiritual and informational supports to make hospice care available to people across Canada.


My purpose in writing this book is to argue that euthanasia is not the way to meet the needs of people who are dying. The euthanasia movement sweeping this continent is a dangerous and ill-informed answer to the human realities and dilemmas of death and to the economic problems facing our health care system.


Derek Humphry, author of Final Exit and co-founder of the Hemlock Society in the United States says that "Quality of life, personal dignity, self-control, and above all, choice, are what both hospice and the euthanasia movements are concerned with....Both hospice and euthanasia provide valuable services to different types of people with varying problems" (p. 36-37). The difference between Humphry's book and this one is simple: Final Exit discusses the benefits of suicide and assisted suicide with three pages on hospice care; Dying for Care discusses the benefits and needs for more hospice care and examines euthanasia within the greater context of what people who are dying really want. Dying for Care will also present current information on Canadian hospice care as well as providing a public forum for the thoughts of some of Canada's palliative care and euthanasia experts.



Across Canada there are people who have a terminal illness, such as the end stages of heart disease, cancer, and AIDS, who are pain free, mentally alert, able to participate in making decisions, and talk with their families, comfortable and able to give and receive emotional and spiritual support with the people they love. These people are benefiting from palliative care either through a formal program of care or through an informal network of support from their doctors, visiting home nursing, homecare programs and their families. Unfortunately they are not the majority.

This book is called Dying for Care because across Canada people are suffering needlessly before they die. They do not have the physical, emotional, spiritual and informational supports they should have. In fact, the palliative care movement is partly a response to a health care system that have not provided sufficient care for people who are dying.


The health care system in this country is among the best in the world. Our country's commitment to quality health care has given us a system with the resources, the skilled professionals and volunteers to provide excellent health care including palliative care to everyone. We have no excuse as a nation for tolerating the kind of pain and suffering that so many people endure before they die.


Managing pain is possible for over 90% of all patients with cancer when the proper methods are used. The World Health Organization, with the help of experts from around the world (including Canada), have developed a simple protocol for managing pain. Each doctor in Canada received this protocol through the federal Health ministry, yet many doctors are reluctant to use the methods because they have little personal experience with them. Many family physicians have only one or two patients a year who have a terminal or life-threatening illness. Unless physicians begin to apply simple pain management patients [who have AIDS, ALS, cancer, heart disease, stroke, neuromuscular diseases or chronic conditions] will continue to suffer needless pain or experience unnecessary drug-induced coma states.


Dying for Care is written in the hope that it will encourage public awareness and informed debate. The alternative is a public and political debate on the pros and cons of legalized euthanasia which will take away much needed energy and resources from palliative care. Such a debate would focus on the narrow issue of euthanasia and avoid looking at the larger context of how we value our own lives and the lives of others. Reducing everything to a pros-and-cons debate of the necessity of euthanasia would once again simplify a complex social issue into a legalistic argument that prevents all of us from making significant improvements in the lives of people across Canada. We must not fall into the trap of a debate on euthanasia that polarizes us and leads to bitterness and even resentment similar to what has happened during the abortion or capital punishment debates. We need an informed debate which will encourage people to work together to improve the lives of all Canadians.


If palliative care is not immediately expanded and improved across Canada I fear that euthanasia will become a choice of desperation rather than education. If that happens it will not be because Canadians believe in euthanasia as the best method by which to die but rather that Canadians were not given the choice of palliative care (formal and informal) and, therefore, not given acceptable life-affirming choices.


I once believed in the individual rights of people to choose assisted euthanasia for themselves. I no longer hold this belief. Helping my parents and grandfather to live at home until their deaths (between 1980-1984) helped me see euthanasia from the perspective of people who were dying. Researching hospice care and euthanasia [since 1985 has given] me a greater understanding of the complex moral and political issues involved. However, it was not until I began struggling with writing this book that I was forced to examine, change and explain my beliefs in the greater context of making any life and death decision.


This book has been written to share these complexities and open the debate. In that spirit, I must begin by making clear my own perspective, my general values and those related specifically to hospice care and euthanasia.


1. I believe that all people deserve to receive, and give, spiritual, emotional, physical and informational support (the palliative care philosophy) at all times during their lives, not just at a time they have a terminal or life-threatening illness.


2. I believe that relationships are more important than policies, procedures or material things. I believe we need to spend more of our valuable time developing and enhancing our relationships with family, friends, colleagues, and other people who need our support. At the same time we must ensure that palliative care programs do not become bureaucratic to the point where individual patients no longer receive the spirit of the palliative care philosophy.


3. I believe a person's individual rights (e.g. making informed choices in life and death decisions) come with individual responsibilities (e.g. do no harm to others) which sometimes leads to moral dilemmas.


4. I believe that occasionally we must accept uncertainty on social issues (such as euthanasia) rather than risk inherent systemic abuses that can come from specific legislation, no matter how well written or well intended.


Specifically in relation to hospice care and euthanasia:


1. I believe that we must increase the number and quality of informal and formal palliative care programs across Canada.


2. I believe that our emphasis on euthanasia is taking away valuable time, efforts and resources from expanding and improving palliative care.


3. I believe we should not legalize euthanasia.


The book is divided into two sections: Part 1 -- the history, importance and need for expanded and improved hospice care, Part 2 -- the euthanasia debate including thoughts from palliative care experts. The last chapter presents my own conclusions.


My view on euthanasia has not prevented me, I hope, from presenting a balanced view on that issue in Part 2 of this book. I hope this book presents some of the complexity of this issue and the struggle each of us must go through to come up with our own answers.

The main point, however, remains the desperate needs of people who have a terminal or life-threatening illness. They need the spirit and knowledge of palliative care through informal or formal programs.

Dying for Care: Hospice Care or Euthanasia


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Copyright © 1992, 1995 Harry van Bommel

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical copying, recording or otherwise, except with the prior written permission of the author or under license from the Canadian Copyright Agency.

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