Meeting death: in hospital, hospice, and at home Heather Robertson McClelland & Stewart, Toronto; 2000 352 pp. $34.99 (cloth) ISBN 0-7710-7562-6
I quite enjoyed reading this book, in which Heather Robertson recounts her experience caring for her dying father in Winnipeg in the mid-1990s. She relates a not uncommon story of fear, fatigue and frustration, much of which derived from a lack of good explanations, clear direction and assistance for her father and herself. This experience prompted her to examine the experience of death and dying in hospital, hospice and at home across Canada. And, to put this experience in a wider context, she visited a hospice facility in Uganda, dropping in to speak with Dame Cecily Saunders, founder of St. Christopher's Hospice in London on her way there.
What she found was what most of us already know: the delivery of coordinated programs for the management of dying patients, including support for their families, is inconsistent across this country. What does exist is often misunderstood by patients, family, health professionals and society as a whole.
Whatever path we travel, we all end up at the same destination: death. Many of us are not going to go quickly or quietly, and the process of our dying may be complicated and difficult. Robertson doubts our society's commitment to ensuring that our final days, months or years are as enjoyable and comfortable as possible. She also questions why so few resources are devoted to making palliative care programs available. Throughout the book she explores her own prejudices toward palliative care, her own fears and concerns regarding her parents and their deaths, and the many complications and changes we all go through in trying to come to grips with our mortality.
Her book relates many patients' unfortunate stories. Often, these are stories of needlessly heightened anxiety and pain, missed or misleading diagnoses or prognoses, a lack of awareness of community resources by patients and families, and a lack of available expertise.
She also describes many places and programs where the delivery of care and provision of support are excellent, but sadly notes that even some of our most well-established programs are being jeopardized by financial stress.
As a family doctor who does palliative care consulting part time, I found that this book reaffirmed my own experience. We need to do a better job as citizens to ensure that our society is educated about the processes of dying and that programs to support patients and families are available and put to good use.
Robertson sums up her feelings as she walks through the door of a hospice:
Why am I here? Because the oncologist's promise to my father — you can die at home — was never fulfilled. [This hospice] is committed to supporting people with life-threatening illnesses within the comfort of their homes and families. I believe in that. I believe that it's cruel and cowardly to abandon the sick, and the dying are sick people who are getting sicker. I believe that all the sick have a right to expert, appropriate medical care, including nursing, for free. I know from experience that family members need instruction, reassurance, and companionship. I hope that if I can be there for someone else, someone will be there for me. I like the nautical term standing watch.
Robertson's journey seems to have allowed her to gain some inner peace. Her book will help readers on their own journey with dying loved ones — not only in making peace with death, but in helping to ensure that “standing watch” is given the societal importance it deserves.