Selected Journals of Successful Hospice Palliative Care

from the 16th International Congress on Care of the Terminally Ill

September 26-29, 2006 Montreal, Canada

Harry van Bommel, Editor


This book is dedicated in memory of Dame Cicely Saunders, founder of the modern hospice palliative care movement. Her death last year reminded so many of us that the movement begins and ends with "watch with me." Watch with me to meet the physical, spiritual, emotional and information needs of people nearing the end of their lives as well as the needs of their families, and professional and volunteer care providers. Her presence is sadly missed.

In honor of Balfour Mount, founder and ongoing inspiration of the International Congress on Care of the Terminally Ill and a pioneer of the hospice palliative care movement in Canada and internationally. He has helped, encouraged and supported countless individuals and organizations to develop programs and services that meet the needs of patients and their families to live life fully. His continuing gift of teaching others how to care for patients, families and professional and volunteer care providers leaves a lasting legacy.



Acknowledgement

The organizing committee of the 16th International Congress on Care of the Terminally Ill made it possible, through their organizers, April Donahue and Robert O'Donoughue, to collect these stories from Congress participants. Without their efforts, this book would not have been possible.

The Congress Executive Committee was:

Anna Towers, Congress Chair and Director, Palliative Care Division, Department of Oncology and Medicine, McGill University, Montreal.

Robin Cohen, SMBD Jewish General Hospital, Director of Research, Palliative Care Division, Departments of Oncology and Medicine, McGill University, Montreal.

Kappy Flanders, Co-Chair, Council on Palliative Care, Montreal.

Bernard Lapointe, Director of Palliative Care, SMBD Jewish General Hospital, Montreal.

The Congress Programme Committee was:

Nathalie Aubin, Montreal General Hospital, (McGill University Health Centre), Montreal.

Manny Borod, McGill University Health Centre, Montreal.

Martin Chasen, Royal Victoria Hospital, (McGill University Health Centre), Montreal

Linda Crelinsten, McGill University, Montreal.

Johanne de Montigny, Montreal General Hospital, (McGill University Health Centre), Montreal.

Justine Farley, St. Mary's Hospital, Montreal.

Krista Lawlor, McGill University Health Centre, Montreal.

Diane Lebeau, McGill University Health Centre, Montreal.

Stephen Liben, The Montreal Children's Hospital, (McGill University Health Centre), Montreal.

Kelli Stajduhar, University of Victoria, Victoria (BC). Golda Tradounsky, Mount Sinai Hospital Centre, Montreal.

Raymond Viola, Kingston General Hospital, Queen's University, Kingston (ON).

The Congress Programme Advisors were:

Balfour M. Mount, Emeritus Professor of Medicine, McGill University

Neil MacDonald, Professor, McGill University.

William Lawlor, Professor (retired), McGill University.

Several other people deserve special mention for their timely help:

Robert Macdonald designed this book for publication and has put in on our web site (http://www.legacies.ca) to share with all Congress participants and anyone interested in successful hospice palliative care around the world. He worked quickly and effectively to bring this information to a global audience within two weeks of the Congress's meetings. Thank you so much Robert.

All of the O'Donoughue & Associates Event Management Ltd. staff and volunteers were wonderfully helpful and encouraging. Specific thanks to:

Gracia Jalea for ensuring that copies of the requests to delegates to share their stories got into every delegate's package with extra copies available in the Internet Café at the conference.

Frank Salvatori for allowing me time on his Internet account to work on this book while also generously providing excellent web site design ideas so we can reach an even wider audience.

Lastly my sincere appreciation to Gwen Klees and Robert Croteau for their hospitality while I was in Montreal and Janet, Bram and Joanna for encouraging me to take the six days away from our family to work on this project.



Introduction

First an apology ­ the stories in this book were collected during 4 days of the 16th International Congress on Care of the Terminally Ill in Montreal, Canada. The short time frame may well lead to a few grammatical and typing errors that were not caught in the editing and proofreading process. I apologize to the writers of this book for any unintentional errors. Please send me any corrections for a revised edition that will be updated and posted on our web page http://www.legacies.ca.


The format of the book has been purposely kept very simple for easy use by delegates of the conference to use the material in their own word-processing or publishing software. The stories are alphabetical, by author's name and the index includes both authors' names and topic headings.

The stories in this book look at the physical, emotional, spiritual and information aspects of care; views by professionals about their work; personal stories by spouses, parents, children and siblings; and even some philosophical musings.


You are encouraged to read the stories and use them in your work. For example, you might use some of the stories in your newsletters, annual reports, other publications, teachings, or to help colleagues or clients understand a specific point about the hospice palliative care philosophy of care.

You are further encouraged to keep on writing your stories and sharing them with others. Through stories we come alive in our work and in our own perspective of the importance of hospice palliative care. Using the Internet and other means, we can share our stories with colleagues, quickly all over the world.


NB: Unless otherwise stated, the names of people in the following stories have been changed to protect their privacy and that of their families and care providers.


Leo Tolstoy wrote that every time we write we should leave "a bit of our blood in the inkpot." The stories in this book do exactly that. The stories are thoughtful, personal and a great testament to the importance of human relationships in all their many forms. I am grateful to the writers for sharing their stories with all of us.


What You Must Do to Use the Stories in Your Work

This material was gathered at and for the16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Everyone who has participated in the project has ensured that their stories are free of error and respect the confidentiality of the people involved as necessary. They retain copyright for their own stories and accept responsibility for what is recorded. Conference participants, and other interested parties, are free to copy whatever material they feel would be helpful in promoting excellence in care. Other than the publisher, Legacies Inc., they cannot sell the book. If they wish to edit or revise any story, they must contact the storyteller directly for permission. If they include this material in other published formats (e.g. as part of a book), they must acknowledge its source. Anyone who uses this material is asked to inform the original author and the publisher, Legacies Inc., in writing and to send a sample of how the material was used to each. The correct citation for reproducing any part of this book is:


Author's last name, first name or initials. (September 2006). "Title" in Selected Journals of Successful Hospice Palliative Care from the 16th International Congress on Care of the Terminally Ill, September 26-29, 2006 in Montreal, Canada. Toronto: Legacies Inc.

Preface & Introduction

Selected Journals of Successful Hospice Care


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Copyright © 2006 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.