Family Hospice Care

Pre-Planning and Care Guide, 20th Anniversary Edition


Preface

Dr. Gillian Gilchrist, MB, ChB. was the Medical Director of the Palliative Care Service at Oshawa General Hospital (Ontario) until her retirement. Her comments below are based on decades of experience as a pioneer in providing palliative hospice care within her community.


In my years of practicing medicine and of providing palliative care I have learned from my thousands of patients, their families, and my many colleagues that the time of living before someone dies can be one of the most important and rewarding times of our lives.


People have a natural fear of pain, especially at the end of life. It may help you to know that:


No one has to experience prolonged, untreated extreme physical pain. No one. I have reviewed the chapter in this book on pain and symptom management, along with other medical colleagues. It gives you a basic understanding of how pain and symptom control works ­ and it does work.

It does not take long for doctors to learn these techniques. If your doctor does not know effective pain and symptom control, ask for a referral to a palliative care physician or change to a different family doctor or specialist. You, nor your loved ones, need to suffer agonizing physical pain ­ you really don't.


People are not burdens to their families, friends or neighbors. It is NOT better to give than to receive. If that were true, only half the people involved (the people who give) would benefit. We know that the reverse is true. In any care-giving relationship the person receiving care gives back as much, if not more, to the people caring for them than the other way around. Just ask the volunteers who donate their time to hospice care if this is true or not.


This time of your life is invaluable, whether you are the patient or the family, or friends and neighbors invited in to provide care and support. Use it well. You will learn or re-learn what is truly important in life ­ that relationships are more important than good health, work and material gain. Slow down enough to nurture and truly be with each other. This time of care giving and receiving is the last gift you can give each other and it is the most fundamentally powerful, memorable and mutual gift available to us all.

The information in this book can help you get the support and information you need. When you get stuck, find an excellent palliative care provider in your community to help. They are there, including many family physicians, specialists, nurses, pharmacists, social workers and allied professionals and volunteer groups. They are over-worked so ask your family, friends, colleagues and neighbors to work towards getting them more help in your own community. Their knowledge and skills are worth the effort. So are their efforts in being role models to my other colleagues who have yet to see effective pain and symptom control work as well as I have told you it can.

My sincere best wishes to each and every one of you.

Dr. Gillian Gilchrist



Dedication

In memory of my parents and grandfather who taught me so much about the hospice philosophy of care: Jacoba Christina Henrica Maria van Bommel-van Enckevort (1926-1980), Johannes Fernandus Gerardus van Bommel (1925-1984), Franciscus Hubertus van Enckevort (1889-1981). In memory of those others I have been privileged to help, including Brychan (Taffy) Jones Price who, along with his loving family, taught me so much. In thanks to Rieky Haas, Philomena van Enckevort, the van Ryswyk family, the van Soest family, and other family members, friends and neighbors who have allowed me to share in their experiences and learn from their wisdom. Dedicated to Janet, Bram and Joanna who teach me every day about physical, emotional and spiritual love and caring.

Copyright © 1986, 1989, 1993, 1999, 2002, 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 publisher, Legacies: Family and Community Resources, or under licence from the Canadian Copyright Agency.

ISBN 1-55307-014-3

National Library of Canada Cataloguing in Publication

van Bommel, Harry

Family hospice care: pre-planning and care guide/Harry van Bommel.

Includes bibliographical references and index.

ISBN 1-55307-014-3

I. Terminal care. 2. Terminally ill ­ Home Care. 3. Home nursing.

I. Legacies: Family and Community Resources II. Title.

R726.8V32 2002362.1'75C2002-901662-2

Introduction: How To Use This Book

What You Must Know

Remember to talk to a professional health care provider (e.g., nurse, doctor, pharmacist or physiotherapist) or legal and financial professional (e.g., lawyer, accountant, tax expert) before trying any of the tips and techniques in this book to make sure you are doing them correctly. This book is not intended to replace professional help or advice but to supplement it and initiate further, informed communications. Any use of the information is at the reader's discretion. The author and publisher specifically disclaim any and all liability arising directly or indirectly from the use or application of any information contained in this book. Health care providers and/or legal and financial professionals should be consulted about your specific situation.

I assume that many people will read only some of the chapters in this book, depending on needs and available time. For those of you with limited time I assumed that you want quick and practical information, so I have kept most of the chapters crisp and to the point. I have repeated some of information in more than one chapter. Although this might prove tiresome to those of you who read the entire book, I believe it is important to keep each chapter as a separate and complete unit for easy reference.

This book is for family members and friends of someone who has a terminal or life-threatening illness. Its purpose is simply to provide information on how you might meet some of the physical, emotional, spiritual and information needs of your loved one who is ill and the rest of your family and friends involved in the care. The book is also designed to encourage open, honest and regular communication and cooperation between patients, families, and health care professionals and volunteer caregivers.

Occasionally I have written something directly to the person who is ill. The rest of the time, the information is directed at family members and friends. Patients are encouraged to read as much, or as little, of the book as they wish. As a family member or friend, you might read through the material and highlight those parts that you think your loved one might benefit from the most.

The book is not designed to make anyone a nurse or palliative care specialist. I hope that the book gives you enough information on how to get the help you need from experts in the field. They are your main source of information. This book is intended to supplement their help.

The book is designed to look at practical concerns like: effective pain and symptom control; living and dying at home, in a hospice or in a hospital; patient, family and caregiver rights and responsibilities; ways to encourage open communication; legal and financial planning; ways to improve overall cooperation including finding and using personal and community resources.

I am not a medical expert, so I have relied on the knowledge and advice of people who are experts in their respective fields. The information in this book comes from personal experiences, interviews, workshops and conferences, written materials from numerous organizations, and in sources listed in the book.

From my own personal experiences I believe that people need clear, brief and practical information. The majority of those actively involved with people who have a terminal or life-threatening illness do not have the time to read long, detailed or theoretical books. They want something that can help today. This book, then, includes many lists, forms and numbered ideas to make it easier to find and use what you need. For those who want more detail, or want to read clinical studies or academic presentations, I have included a comprehensive list of recommended readings.

My parents and grandfather all died within a five-year period. They were not afraid of death as much as they were afraid of how they would die. In all three instances I was fortunate enough to be one of the people helping them to live at home until they died. Had we known more about proper pain control techniques, hospice and home care alternatives, patient and family rights, financial planning, etc., we could have provided even better care. We wanted to do so much more for the people we loved but we didn't know how. We didn't know where to get the information about how to provide better care.

Terminal illness does not mean a failure to cure. It does not mean that the disease has to rob us of our ability and need to love and to care. Terminal simply means 'last' and in that sense of the word, a terminal illness is simply our last illness.

Personal control is all too often lost when a diagnosis of a terminal or life-threatening illness is made. People who have been in charge of their careers, their homes and especially their own minds, find themselves powerless to direct their lives. A sense of control comes from understanding what the options are and making decisions based upon reliable information. Knowledge decreases fear while increasing personal control.

Physicians, nurses and other caregivers are not strangers to the frustrations of terminal or life-threatening illnesses. Until recently, their education contained little information about end-of-life care and ways to help their dying patients. These dedicated people were taught how to cure people, so to admit there is no cure goes against all of their professional training. They also feel a loss of control.

All of us have different experiences, religious and moral beliefs and ways of making decisions. Patients and families may decide to leave most of the decisions in the hands of their medical caregivers or they may choose to actively make their own decisions based on counsel from caregivers, other family members, and spiritual leaders. My goal is to ensure that people know they have options and that they can exercise control over their medical treatment.

Although the focus of this book is primarily on patients and families understanding their options, I have a great deal of empathy for the role of the professional and volunteer caregivers. Often, final decisions about a person's life and death are left to these people. Their role is crucial and our understanding of how it affects us is very important to total patient care.

I have tried to write in a style that reflects the importance of both women and men in the caregiving professions. It is hard to find the exact words to describe the different roles people have. I have used patient rather than consumer or client because most of us who have been patients understand the word means 'someone who receives treatment'. (We also know too well that patience is a major requirement for anyone who receives treatment.)

I have used family to include both people who are part of one's immediate family and those we define as members of our family through friendship and love. Family can also include people whose relationship to the patient is emotionally significant but uncertain, conflicted or even hostile. Such people care for the patient but do so unwillingly or reluctantly. Caregivers include professionals and volunteers who help care for our loved ones. A primary caregiver usually is a family member or close friend who provides most of the physical care for a person at home (e.g., wife, husband, lover, best friend).

The words palliative and hospice mean exactly the same thing. I will use both terms. The hospice philosophy of care is about trying to meet the physical, emotional, spiritual and information needs of people with a terminal illness or life-threatening illness and their families.

Many of you reading this book are presently involved in a personal and/or professional way with someone who has a terminal or life-threatening illness. I encourage you to adapt the book to your personal or professional needs. I have designed this book to meet the concerns and interests of as many different people as possible. For professionals in the field, I believe this book is very useful to your patients as a basic understanding of what their choices are while encouraging them to work with you for the best care possible.

I strongly believe that improving communication and cooperation between caregivers and between programs and services will lead to greater comfort and peace for a person who is dying, and personal satisfaction for those who are helping people to live as fully as possible until they die. This goal is reached every day in Canada when people have proper pain and symptom control, and receive emotional, spiritual and informational support and loving care.

Note: This is a relatively short book given all the topics it covers. Therefore, we cannot look at every kind of situation you, or a loved one, may experience. Adapt the information in this book to meet your needs. Some people who use this book will need it for only a short time. Others may need it for several months or longer. If you cannot find what you need in this book, ask your Home Care Case Manager, family doctor, or visiting home nurse for more specific information. There is a lot of information out there and these people can help you get it quickly. Also look in the reference and organizations' lists at the back of this book for more information.

My sincere best wishes,

Harry van Bommel

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Family Hospice Care:


Pre-planning and Care Guide


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Copyright © 1986, 1989, 1993, 1999, 2002, 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.