Gift of Care


Harry

van Bommel








Resources Supporting  Family

& Community Legacies Inc.

Toronto 2008




© 2008 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, photocopying, recording or otherwise, without the prior written permission of the author.


Cover illustration by Robert Macdonald


ISBN 978-155307-031-3




   

Resources Supporting Family and Community Legacies Inc.

11 Miniot Circle

Toronto, ON

Canada  M1K 2K1

(416) 264-4665

e-mail: harry@legacies.ca

web site: www.legacies.ca




Acknowledgements


This book is based on workshops that I present to professional and volunteer health care providers, families and patients. I 12am very grateful to the thousands of participants who have shared their experiences with each other and with me during these workshops over more than 20 years. I am also grateful to those who have made suggestions of how I could improve the workshops and make them even more practical.


   I am also grateful to the many professionals and volunteers in both health care and hospice palliative care who have reviewed my other publications over the years to help ensure that they are as helpful and accurate as possible.


   A special thank you to Jeanette Browne who was the Volunteer Co-ordinator at Toronto Hospice and has worked in the hospice field in various capacities since the 1990s. She was the first Education Coordinator at the Hospice Association of Ontario and, therefore, helped many community hospices develop their programs for staff and volunteers. Her expertise in this field and other community service organizations helps ensure that the information in this book continues to help a wide range of professionals and volunteers as they provide the gift of care.


   Lastly, I would like to thank my wife, Janet Klees, for editing the first draft of this book (as she does all my books!) and for her support and encouragement of the work I do. Writing can be a time consuming task and she always gladly frees up my time so that I can work when I need to. Also, to our children, Joanna and Bram, for their enthusiasm and pride in what I do. One cannot work in this field without recognizing the gifts of support received from family and friends. It means more to me than they might suspect and I am grateful.


A Note on Language


I will use several terms throughout this book. Health care vocabulary changes so often it is hard to keep up. For consistency I have used the following terms:


   Patient is the person receiving care. In many programs this person is also called client, consumer, decision-maker or resident. Patient, however, is the term used most often and is, therefore, not confused with clients who may include the patient's primary caregiver or family member.


   Hospice palliative care means care given to someone facing their final illness. When Dr. Balfour Mount coined the phrase “palliative care” in the mid 1970s it was used in Canada rather than “hospice care” (as it was called in Britain where it was founded by Dr. Cicely Saunders in the 1960s). He chose “palliative care” because “hospice” translated into French could mean a poor house where people go to die. He wanted a term that was more easily translated in both English and French - palliative care or soin palliatif.


   Sadly, we have confused an often-confusing term by combining them into “hospice palliative care.” However, we are stuck with this new term and so I use it here. I sometimes use the shorter version of “hospice care” or “palliative care” because they are actually quite interchangeable grammatically. What has changed is that hospice care now often refers to care given in the community and palliative care is that which is given by physicians and hospital-based programs.


   Care providers or caregivers are health care professionals and volunteers.


   Family members may provide care but their principal role must remain that of spouse, child, parent, closest friends, grandparent, etc. They must never be seen nor labeled as only 'caregivers.' Family is defined as those people the person identifies as family and often includes their best friends.


   Volunteers refer to those caregivers who volunteer their help through a formal program or agency such as a community hospice service or hospital volunteer department.



Introduction


To care FOR someone,

you must care ABOUT them.


This book is meant to provide practical information, support and encouragement to all those who provide care - family members, friends, professional and volunteer caregivers. Sometimes examples apply to all caregivers while other examples may be specific to volunteers or family members.


   Although this book is primarily about providing hospice palliative care, I hope that professionals and volunteers in other fields of health care will learn from this ancient philosophy of care. It is highly compatible with modern health care when the two are combined and the patient and family are truly treated as the prime decision makers and recipients of care.


   This book is partly based on the care I provided my mother, my grandfather and then my father when they were living at home until they died. I cared for them in their homes and these experiences were life defining and life affirming. I learned to be a better son, better spouse, better friend, better parent and a better neighbor.


   Part of the information is also based on the hospital birth of my son and home birth of my daughter plus the home care I have been privileged to provide to family and friends recovering from surgery, injury or illness.


   Providing care is different from receiving it. I learned this when I was on the receiving end of care after various illnesses and surgeries. It is receiving care that taught me that the gift of care must be mutually beneficial to be truly a gift.


   This book contains original material not found in any of my other publications. It is based on the workshops I provide to health care and hospice palliative care providers. Many of them have asked that I write a short book expanding on the ideas I present in my workshops.


   The times family members spend caring for their loved ones are times filled with a roller coaster of emotions from their highest highs to their lowest lows. For most of us family members, there is no road map so we stumble along together. I hope that this book provides you with the knowledge and acknowledgement of what you do well so that you can help other people on this roller coaster ride.


   When you provide care to people like me, you have an opportunity to ensure that your patients' and their families' last months together are filled with the type of caring we hope to have in our own last months.

Every day you have an opportunity to make that dramatic difference in someone's life. Every day!


    And everyday, that difference you make enhances your life in immeasurable ways. This is a mutual gift. You will give your knowledge, skills and compassion and you will receive some of the same in return. Sometimes you will give more and other times you will receive more. That is part of the gift of what you do.


   Use this gift well. No other experiences in life are filled with as much potential. You are part of a time-limited yet opportunity-rich set of experiences.


   Local examples of this type of care are provided in your community by people who have gone through these experiences themselves and by hospice palliative care programs, visiting home nurses, knowledgeable family physicians who make house calls, pharmacists who provide advice, funeral directors who provide information and so many more. Find them, learn from them, observe them and treasure them all.


   Traditional hospice palliative care is the model all health care providers (professionals and volunteers) need to apply to their work. Whether you work in acute care, long-term care, respite care, community health and related fields, the hospice palliative care model combines ancient wisdom with modern health care.


   Health care is providing excellent physical, emotional, spiritual, and information supports to patients and their loved ones from birth to death.


  Hospice palliative care is providing excellent physical, emotional, spiritual, and information supports to patients and their loved ones in the last period of life.


   If health care met people's needs, hospice palliative care would not be necessary. Since modern health care does not meet dying patients' needs, hospice palliative care should be brought in as soon as possible to help people in their last period of living.


   This point is crucial to your understanding of the rest of this book. If health care met people's needs, hospice palliative care would not be necessary. We would not need a separate program to meet people's needs because health care providers would already be trained and experienced in meeting people's physical, emotional, spiritual and information needs. Therefore, hospice palliative care should never try to emulate the systemic approach to care that exists in present-day hospitals and long-term care facilities. Rather, it should become the model that others copy to enhance their care at all points of a person's life. People should not have to be dying to get excellent physical, emotional, spiritual and informational care.


   Look at your own life and work. Ask yourself the following questions.


1. Have you ever been patient? Would you like to be a patient again? Why or why not?

2. Have you ever received home care before? Was it enough? Why or why not?

3. Would you, as a health care professional or volunteer, recommend your work to your children? Why?

4. Do you look forward to receiving the service you provide now to others and in the settings where you provide that service? Why or why not?


   Ask yourself how patients in your care have similar needs to all of us and identify how you can meet those needs even more than you do now.


   A chronic care patient spoke the patient perspective that best summarizes what care providers need to understand about care:


I have been chronically ill for twelve years. Stroke. Paralysis. That's what I'm dealing with now. I've gone to rehab program after rehab program. I may be one of the most rehabilitated people on the face of the earth. I should be President. I've worked with a lot of people, and I've seen many types and attitudes. People try very hard to help me do my best on my own. They understand the importance of that self-sufficiency, and so do I. They're positive and optimistic. I admire them for their perseverance. My body is broken, but they still work very hard with it. They're very dedicated. I having nothing but respect for them. But I must say this: I have never, ever, met someone who sees me as a whole... Can you understand this? Can you? No one sees me and helps me see myself as being complete, as is. No one really sees how that's true, at the deepest level. Everything else is Band-Aids, you know. [Ram Dass & Paul Gorman in How Can I Help?]


   Seeing someone as a whole is our greatest gift to each other. When you look at yourself in the mirror, do you see the person you feel like “inside?” Are you sometimes surprised by how you look? Most of us do not feel how we look. We often feel younger than we look. I certainly am thinner in my mind than in the mirror!


   When my grandfather was dying, he was 92 years old. I asked him one day what he missed most in his life. After several quiet minutes he answered: “I miss my mother.” She had been dead for 53 years. He had a wife, 10 children and 35 grandchildren but he still missed his mother most. That was a very telling moment for me. It reminded me that someone who is “old,” a recipient of The Netherlands highest civilian honor, a successful businessman and so much more still has elements of his youth inside him. When he looked in the mirror, he saw an old man yet his heart and mind has many elements left of his childhood. In hindsight, that is not a surprise but at the time (I was 25 when I asked him the question) it was a revelation.


   Mr. G.1   was a 70-year old man with a cancer that ate away his nose and mouth leaving an ugly tumor in their place. He wanted to die. His wife agreed he should die. He was not in pain. He was well loved by his family and friends. His spiritual community was very supportive. But he could not deal with the constant emotional pain of watching people's faces as they looked at his tumor. Inside he was the man he always was but in the mirror he was horribly disfigured and it pained him to watch people look at him.


   The palliative care team caring for him at Parkwood Hospital in London, Ontario had real questions about their own beliefs of caring for this man at the end of life. Never in their experience has someone challenged their views on euthanasia as profoundly. They could all easily imagine themselves in his place and understand his request to die to avoid the terrible trauma of people's responses to how he looked.


  Mr. G had a 6-year old granddaughter who desperately wanted to see her Grandpa. Her mother (Mr G's daughter) did not want her to see her grandfather like that. Mr. G did not want to see her either and the palliative care team at the hospital thought it best she not see him too.


   However, like so many 6-year girls and boys, when they really, really want something they pester and hound their parents until they get their way. The parents and grandparents and palliative care team all agreed she could visit on the condition that the team prepare her before she went into the room.


  As only a 6-year old can do, she sat in her chair with an air of complete indifference listening to their chatter until she was finally told she could go and visit her grandfather. She ran from the room down the hall to his hospital room, rushed through the door and up to his bed and encircled his neck with a great big hug. She said, “I love you Grandpa. Please don't go.”


  This little girl reminded her parents, grandparents and palliative care team to see her Grandpa as a whole man and how to nurture that caring spirit. She saw the whole man within the body rather than the tumor on his face. She reminded her grandfather to look within his heart rather than to look in the mirror. She gave him the gift of life when others were wondering if the gift of death might not be easier for him. She reminded him that he was still a grandfather and not just a patient. His 'work' was not done - she still needed him.


  In a lighter vein, she may have been a Star Trek fan where characters with 'ugly' faces become characters we become interested in. We cheer for them when good things happen to them during the show and even grieve a little when bad things happen to them. Some fans grow fond of the character regardless of how they look. Their makeup is often ‘disfiguring' (e.g., Klingons) and not very attractive the first time we see it, yet fans grow accustomed to it and find the person inside the costume physically attractive at some level.


  Part of our inherent nurturing spirit comes from our own belief systems. Dr. Dorothy C.H. Ley was a founder of the hospice movement in Canada. A haematologist for most of her professional life she saw so many patients die from their cancer and decided that a better way must be found. In her subsequent palliative care work she concluded that effective care required meeting people's physical, emotional, spiritual and information needs. However, it was the spiritual aspects of care that provided “the heart of hospice.”


Spiritual care lies at the heart of hospice. It says we are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your own meaning in your own life -- your way. We will comfort you and those you love -- not always with words, often with a touch or a glance. We will bring you hope -- not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there.2 


   Spirituality has to do with who we are as people.  Religion has to do with how we practice our spirituality, if at all, through various religious beliefs, practices and rituals.  We are all spiritual people in the sense that we all have a need to know our lives have value and meaning.  We are all children of God, however we describe God, and we are connected to each other, and to all nature, as members of a living community. 


  The only thing that separates us spiritually is our belief that separateness is possible.  Our spirituality is often best expressed in times of great joy or distress.


   Lyn Zimbler, a South African woman living with multiple sclerosis, wrote a book about her journey with this condition. She concluded that:

It seems to me that the gift hidden under the wings of this monstrously demanding dragon, is the gift of a wiser love and a more humble understanding.3


   It is in this spirit of a wiser love and a more humble understanding that this book is dedicated to all care providers so that we can, together, meet the physical, emotional, spiritual and information needs of those living through their final illness.


Gift of Care


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Copyright © 2007, 2008 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.