Family Hospice Care Contact List

Print and photocopy this sheet. Have one copy by each telephone and one in your pocket.

Patient's Name: Phone:

Health Card #:

Emergency Contact: Phone:

Doctors: Phone:

Home Care Coordinator: Phone:

Home Care Services: Phone:

Nursing: Phone:

Homemakers: Phone:

Hospice/Palliative Care Service: Phone:

Volunteers: Phone:

Pharmacist: Phone:

Drug Store: Phone:

Neighbors: Phone:

Other Health Insurance:

Help Keep this Book Relevant

If you would like to offer your comments to help keep this book up-to-date and relevant to all users, please answer the following questions:

Name and telephone number: (optional)

I am a: q family member q friend q neighbor

q professional care provider q volunteer

1. What did you like about the content of this book? How did it specifically help you and your family/organization?

2. Are there areas where you would have liked more or less details?

3. Are there areas that were not covered that would help other families/organizations in the future?

Please mail, fax or email your comments to:

Legacies: Family & Community Resources

11 Miniot Circle, Scarborough, Ontario M1K 2K1 Canada

Telephone: 416.264.4665



This book is a major revision of my Choices for People Who Have a Terminal Illness, Their Families and Their Caregivers, published and revised in 1986, 1987 and 1993. The people I acknowledged in that book deserve on-going credit for their invaluable contributions.

Although numerous people are mentioned in this section, each individual's contribution was very important.

I thank all the people at NC Press for their efforts: Caroline Walker; Janet Walker; Ruth Chernia; Lisa Dimson; Rani Gill; Elina Guttenberg; Ron Lovering; Lynn McClory; and Elizabeth Whitehead.

My heartfelt thanks to the people who shared their personal stories with me: Carol Brock, M.D.; Frances Elliot, R.N.; The Reverend Keith Nevel; and Hans Peters.

The following people and organizations provided information and assistance for which I am grateful: American Civil Liberties Union; Anglican Book Center; The Connecticut Hospice Inc.; Malin Kurz, Joe Gilhooly and Edward W. Keyserlingk, Law Reform Commission of Canada; The Medical Post; New York Task Force on Life and the Law; Dr. Cicely Saunders of St. Christopher's Hospice; John Toye; and Carol Williams plus many of the organizations listed in the book.

I want to thank the people I interviewed throughout the research for this book, with special thanks to the following: Nell Bushby of the Bessie Dane Foundation (hospice program on Salt Spring Island, BC); Marcia Darling, Manager of Marketing Services for the Toronto Trust Cemeteries; Mary Devassy, M.D., a family practitioner; Jo Dixon, Llona O'Gorman and Marie Teitge of Hospice Victoria; Stephen Fleming, Ph.D., a psychologist and professor at York University in Toronto; Peter Hanson, M.D., author; Bob Hatfield, M.D., and Diane Yackel of Hospice Calgary; Paul Henteleff, M.D., former Director of Palliative Care Unit, St. Boniface Hospital, Winnipeg, Manitoba; Dorothy C.H. Ley, M.D., Founding Executive Director of the Palliative Care Foundation of Canada; and Ken Walker, M.D., author.

Several people read most or all of the manuscript and provided useful suggestions for improvements: Estelle Altman; Leslie Balmer; Carol Brock; Colleen Burns; Janet Klees; and Bill Weiss, M.D. Any content errors that remain are mine.

Special thanks to the following people for their help with the second and third revised editions of Choices: Balfour Mount, M.D., Director of Palliative Care Service at Royal Victoria Hospital in Montreal; Dame Cicely Saunders, DBE, founder of St. Christopher's Hospice in London, England; Warner Montgomery, Ph.D.; and Rieky Haas.

In this major new edition ­ Family Hospice Care ­ I want to thank Deb Thivierge and the Huson family who gave up their homes for several weekends so that I could work uninterrupted. Also the Augustinians at Marylake Monastery, who welcomed me and provided me with a quiet, spiritual environment over half-a-dozen weekends to work on this book. I am grateful to you all.

Beverley Powell-Vinden did the final edit and typesetting of this book. Her efforts make this book more concise, easier to read and her nursing background adds to its final usefulness.

To the reviewers of the 1999 edition, I am grateful to:

Bonnie L. Barry, is an oncology social worker and bereavement counselor at Mount Sinai Hospital in Toronto. Her suggestions on how to rewrite Choices were incorporated into the first draft of this book.

Carol A. Brock, M.D. reviewed her story from the first edition of Choices and updated the information.

Burnaby Palliative Care Program team members: Leanne Baird, Hospice Program Manager; Kathy Bodell, Clinical Process Leader; Kate Doyle, Social Worker; Theresa Guscott, Palliative Care Unit Patient Care Manager; Judy Hedberg, Home Care Liaison Nurse; and Eve S. Sample, Clinical Pharmacist; who each took portions of the manuscript for review and who all submitted valuable recommendations.

Michèle Chaban, M.S.W., Ph.D. is a masters trained social worker and a doctor of philosophy. She worked at Mount Sinai Hospital in Toronto in Oncology and Palliative Medicine. As a thanatologist, Michèle teaches at the Faculty of Social Work and the Faculty of Medicine's Continuing Education program at the University of Toronto. Her extensive suggestions and revisions added depth and detail to all the aspects of hospice care.

Maureen Cooling, R.N., E.T., is an Enterostomal Therapist with a community nursing agency who was most helpful in explaining various symptom management techniques. I am indebted to her for sharing her expertise.

Carla Crowther, B.Sc., R.N. is a case manager for the Grey-Bruce Community Care Access Center in Owen Sound, Ontario. Her thoroughness is very much appreciated.

Susan Delmar is a young mother and widow whose perspectives added specific tips and suggestions that will help patients, spouses and young children going through the experience of a spouse and parent dying.

Shari Douglas, R.N. is the palliative care coordinator at the Grey-Bruce Community Care Access Center and is President of Shari Douglas and Associates. Her professional experiences in her local community and her active participation in provincial and national health care and palliative care organizations provides us with unequaled insights and suggestions.

Anne Gardner, CLJ and Peter Gardner, KCLJ, are from the British Columbia Commandery of The Military and Hospitaller Order of Saint Lazarus of Jerusalem, and provided very specific and practical recommendations to make the book more useful for patients and families.

Gillian Gilchrist, MB, ChB., retired as the Medical Director of the Palliative Care Service at Oshawa General Hospital (Ontario). Her professional expertise is outstanding in this field and her comments brought reinforcement for what was written as well as specific suggestions on how to enhance the material.

Douglas Graydon, is the Pastoral Counselor at Casey House Hospice in Toronto, and added thoughtful revisions to the chapters on spirituality and legal documents and decision-making and I am most grateful.

Peter Hargreaves, M.D. is Medical Director at The Lions Hospice in Kent, England. He reviewed the material from the perspective of caregivers in a freestanding and community hospice.

Robert E. Hatfield, M.D. (interviewed for the first edition of Choices) is a palliative care physician in Calgary with extensive experience. His comments added specific information that will be invaluable to patients and their families.

Blair Henry is Client Services Coordinator at Trinity Home Hospice. He updated some of the information in Chapter 19 on creating your own support circle/team to assist all of us who work in formal or informal circles.

Anne Isenberg is a graduate of the Seneca College Palliative Care Certificate Program and is an active volunteer with Bereaved Families of Ontario. Anne's personal experiences with grief, her research and work in this field, her experience as a writer and editor, and her friendship have enriched the content of this book for which I am grateful.

Larry Librach, M.D., CCFP, FCFP is the Director, The Temmy Latner Center for Palliative Care, Mount Sinai Hospital, Toronto. His thorough review and recommended changes to the final draft of the chapters on pain and symptom control and what to expect at the end of life have made these chapters truly useful and accurate. I am grateful for his thoughtful approach to providing easy-to-read medical information.

Marilyn Lundy, R.N., PHN, the Coordinator of Palliative Care for Saint Elizabeth Health Care provided updated information to the draft manuscript with my appreciation.

Eileen McArthur has been a volunteer in a hospital palliative care unit and a trainer of palliative care volunteers. Her review of the material from her personal and volunteer perspectives was invaluable.

Eleanor G. Pask is the Executive Director of The Childhood Cancer Foundation ­ Candlelighters Canada. Her thorough and thoughtful review has provided excellent improvements throughout the entire book.

Mary Lois Rennie is a hospice practitioner, volunteer and educator. Her hospice and personal expertise plus her meticulous editing of this book have added immeasurable practical information for patients, families and care providers.

Anna Towers, M.D. of the Palliative Care Program at McGill University in Montreal and a physician at the Royal Victoria Hospital reviewed the manuscript and provided excellent recommendations to improve the chapter on pain and symptom control. Her expertise is most welcome.

Sue Watts, R.N. is the Day Care Manager for the Lions Hospice in Kent, England. She reviewed the manuscript from both the perspective of caregivers in a freestanding and community hospice.

I am also thankful to the following for reading the manuscript and for providing general comments and recommendations that have enhanced the book: Margaret Clarke, Executive Director, Hospice and Palliative Care Manitoba; Frederic S. Martin; James McGregor, M.D., former Assistant Professor in the Departments of Family Medicine and Oncology at Queen's University in Kingston, Ontario; the Head of Palliative Care Services at Hotel Dieu Hospital and Palliative Care Consultant to the Kingston Regional Palliative Care Center and Kingston General Hospital; now in practice in California; Peter J. Mortimer-Rae, KLJ, OMLJ, Commander of the Calgary Commandery of The Military & Hospitaller Order of Saint Lazarus of Jerusalem; Sid R. Wallace; and Rob Wedel, M.D., Medical Director, Palliative Care Program, Lethbridge, Alberta. My thanks go to Robert Clarke of The Military and Hospitaller Order of Saint Lazarus of Jerusalem for securing the helpful editorial comments of some of the people listed above.

For the 2002 edition, I am also grateful to:

Sonja Davie for her thoughtful, ongoing editorial suggestions that improve the readability and usefulness of the book.

Gayle Dunsmuir, Coordinator of the 100 Mile District Hospice/Palliative Care Society and her volunteers who made suggestions to improve the formatting of the text.

Gillian Gilchrist, MB, ChB. Retired Medical Director of the Palliative Care Service at Oshawa General Hospital (Ontario) for her Preface to the book. Her decades-long commitment to hospice care serves as a wonderful role model to all care providers.

Robert Ting, M.D., FRCP(C) practicing nephrology in Toronto who provided keen insights into improved communications among specialists and their patients and families.

Anna Towers, M.D. of the Palliative Care Program at McGill University in Montreal and a physician at the Royal Victoria Hospital added invaluable information for the pain and symptom control chapter.

For this 2006 edition, I am also grateful to:

Victor Gascon for allowing me to reproduce a letter he wrote to his mother-in-law nearly three years after her death. It highlights the memorable impacts caring for her at home for her last days had on her family and on him personally. His letter is a gift to all of us.

Robert MacDonald whose personal and volunteer experiences in hospice care and his professional skills in marketing, book design and web management have provided added insights on how we can reach a wider audience with our practical and useful information.

Josi Perotto for her ongoing encouragement of our work and insights into what patients and families need most.

Louise Szabo for permission to include some of the funeral preparation questions from her book Goodbye with Love and Dignity.

I wish to thank Barry Ashpole, editor of The Pain Management Newsletter published by Knoll Pharma Inc. for permission to reprint revised versions of 'success stories' in Chapters 4 and 8 that first appeared in the newsletter in 1997 and 1998.

Over many years, I have spoken to thousands of people across Canada in workshops; college and university courses; at professional and volunteer in-services, and at provincial, national and international conferences on issues of dying, death and bereavement. To those who took the time to talk or write to me with their experiences, stories and practical advice, I thank you.

To the members of the palliative care associations to which I belong, I am grateful for their information, advice and stories. These groups include the Canadian Hospice Palliative Care Association, the Hospice Association of Ontario, the Toronto Palliative Care Council, the National Hospice Palliative Care Organization (U.S.), the Ontario Palliative Care Association, and the former Palliative Care Work Group of Toronto.

I am also grateful to many hospice groups across Canada whose self-published manuals and brochures for their volunteers, patients and families are full of helpful information and tips, consistent with the material in this book.

To those who speak and write about palliative care, I am grateful for their re-affirming that much of the information in this book is not unique but shared by most of us. In particular, I would like to thank Dr. Cicely Saunders and Dr. Thérèse Vanier (retired) of St. Christopher's Hospice in England for their insights and expertise as founding members of the hospice movement internationally during interviews given in the summer of 1996.

My loving thanks and gratitude to my best friend and wife, Janet Klees, for always encouraging my work and for challenging me to do my best. Her first editing of the manuscript made it more concise, readable, useful and relevant to families caring for a loved one. To our children, Bram and Joanna for reminding me that the hospice philosophy of care is quite natural to a child. I am grateful to my family for constantly reminding me what is possible when you balance love, gratitude and service

Family Hospice Care:

Pre-planning and Care Guide

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Copyright © 1986, 1989, 1993, 1999, 2002, 2006 Harry van Bommel

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