What Dying People Want: Lessons for Living from People Who Are Dying - Softcover

David Kuhl

Softcover

ISBN 10: 0385658842 ISBN 13: 9780385658843

Publisher: Doubleday Canada, Limited, 2003

Synopsis

An internationally renowned palliative care physician offers guidance on living with a terminal illness. Based on research funded by the Soros Foundation and extensive interviews with dying people. A profound and practical book about living with a terminal illness over a long period of time. It offers guidance, solace, and helpful strategies for people who are terminally ill, their families and caregivers. Facing death results in more fear and anxiety than any other human experience. Western medicine has accomplished a great deal in addressing physical pain and controlling symptoms for people with a terminal illness, but much slower progress has been made in understanding and alleviating psychological and spiritual distress. In What Dying People Want, Dr. David Kuhl begins to bridge that gap. He does so by addressing end-of-life realities -- physical, psychological and spiritual -- through his own experiences as a doctor and through the words and experiences of people who know that they are dying. He presents ways of addressing the pain, of finding new life in the process of dying and of understanding the inner reality of living with a terminal illness. He acknowledges the despair and recognizes the desire for hope and meaning. Dr. Kuhl also makes the provocative case that insensitive communication by doctors creates more suffering for patients than either the illness or the knowledge of impending death, and offers both the dying and their caregivers guidance on preventing painful interactions. He provides ways of speaking about difficult topics with physicians, family members, friends and those who have a terminal illness

About this title

Review

The introduction in this wise book mentions something that author David Kuhl learned from his years of working with the terminally ill: "I didn't know how to talk to them about dying." In What Dying People Want, Kuhl shares his education on this topic by focusing on the daily experience of patients who are learning how to broach such discussions with their caregivers and families while coming to terms with their own mortality.

Heart-wrenching personal stories are intertwined with practical suggestions, and specific instances are frequently used to illustrate techniques, processes, and the importance of telling your story, rather than assuming your family already knows it. Kuhl focuses particularly on coming to terms with one's past. Discussions of family histories, lifelong priorities, and difficult choices are emphasized as tools for making peace among family members and with one's own conscience.

The daily life of pain management and support groups is also covered in detail, and Kuhl offers plenty of suggestions on how to begin that difficult conversation in which death is first acknowledged as a rapidly approaching fact. Written for patients and caregivers as well as friends and family, this useful guide will help everyone involved navigate the twists and turns of terminal illness. --Jill Lightner

From the Author

In the late 1970's, while I was attending graduate school, Rob, a close friend of mine, died of cancer. He was generous, funny, committed to making a difference in the world and very full of life. Then he died. His dying had a profound effect on me, so much so that two year later when I was a medical student I began to learn about caring for people at the end of life, particularly those with cancer. Ten years after Rob's illness I had the opportunity to start a palliative care program at a major teaching hospital. That was at a time when the challenge was to incorporate care, not only for people with cancer, but those with AIDS as well. That meant caring for men some of whom were younger than I was. I began to realize that while I was equipped to care for their pain and other symptoms, I was much less prepared to care for them, psychologically and spiritually. For that reason I conducted a study: Exploring Spiritual and Psychological Issues at the End of Life. I listened to the stories of people's lives, I worked to suspend judgment and to simply understand the experience of what it meant to live each day with the knowledge that the disease within them would likely be the cause of their death. It was an intense and an in-depth study. It was also a time of self reflection.

I learned a great deal from the people who courageously spoke their truth. In time, many of them asked me to share what they had given to me with others who would follow, those with a terminal illness as well as their friends and family members who would care for them and about them. They asked specifically that I write a book for a general audience, and not only for my colleagues. In the book, I work to present the themes that the people spoke of to me in their stories, to put them into a literary context, and to feature practical wisdom in each chapter. The essence of the research questions was, what is the daily experience of living with a terminal illness? How does that experience affect your sense of self, you relationship with others, and your understanding of the spiritual? The answers to those questions comprise What Dying People Want.

Edition details

• Publisher: Doubleday Canada, Limited
• Publication date: 2003
• ISBN 10: 0385658842
• ISBN 13: 9780385658843
• Binding: Paperback
• Language: English
• Edition number: 1
• Number of pages: 352