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

by David Kuhl

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

Genres: Nonfiction, Death, Psychology, Self Help, Personal Development, Social Work, Health

352 pages, Paperback

First published January 1, 2002

Reviews

[Kelly · Rating 4 out of 5]

This book is a great starting place for people overwhelmed with the concept of death and mortality. It's not deeply philosophical, but it's what it claims to be: practical. I recommend this to pretty much anyone who hasn't given death and dying much thought and would like to begin decreasing their anxiety over this process. It also offers practical solutions and steps to take to wrap up your life in a way that makes dying seem less tragic and abrupt, and if that isn't worth a gander, I don't know what is.

[Cathy · Rating 4 out of 5]

I picked this book up after the death of a good friend as well as to see if there was any insight offered on end of life decisions or quality of life considerations. While it was a bit rambling and repetitive in sections that did not bother me. Rather much of what was shared was what I had suspected would be the thoughts of the dying people who shared their stories. Over and over-the desire to speak their truth, be heard and not pandered to, to connect on meaningful terms.

[John Kaufmann · Rating 3 out of 5]

Solid. This book provides a lot of practical advice and a lot of case studies from people who are dying. A little uneven - some chapters/subjects the author covered very well, some I thought rambled or were a little off-point. But overall, solid.

[Mike Blyth · Rating 4 out of 5]

As pointed out in a previous review, this is not a book with the most up-to-date research and theory on grief, loss, and dying. But then, if it were, it would lose its primary audience, ordinary people. If you have done a lot of work in this area then you may not find much new, though I think the book is still a refreshing read. But it is a book I could recommend for many patients and family members, as well as some caregivers who may not have had much education and experience with grieving people. As a physician, I doubt that the book is too "basic" for most colleagues who are not in high-mortality specialties.

[Sheila · Rating 4 out of 5]

Thoughtful and compassionate book written by a physician who interviewed many dying people in order to provide a kind of guide for those who know someone who is terminally ill or who are dying themselves. I appreciated hearing the stories of those he interviewed and learning more about what was important to them in their final days. The author’s respect and empathy for his “co-researchers “, as he calls them, is evident throughout the book. I especially enjoyed the final chapter, where he details having to put his research into practice when it became clear that his sister was in the last few weeks of her life. It’s a book I will return to as my loved ones grow close to the end, in hopes of reminding me how to best support them through life’s last journey.

[Andrea · Rating 3 out of 5]

This is a pretty invaluable book with stories on terminal illness and different strategies to deal with your terminal illness or someone else's who you know and love. I found this book reassuring, therapeutic and informative on the author's experience with end of life care.

[Katie · Rating 5 out of 5]

A must read and must have for any person with a terminal illness or those working with (or wanting to work with) those dealing with terminal illness. One of my favorite lines Dr. Kuhl imparts in the book is reminding the reader that those living with illness are doing just that - *living* with dying. Terminally ill people are still people, they are still alive, and much of the time get pushed away by family, friends, and society for various reasons (fear, shame, etc). Caring for the ill and dying is a massive task, as is living with an illness. Even if you aren't terminally ill, I'd recommend this book, as death is a natural part of life and everyone will eventually meet the same end (the physical body expires, whether that's a car crash, heart attack, or cancer). Understanding death as a part of life can help comfort those facing it, but also those who haven't confronted their own mortality - cancer might not happen to you, but there is always the possibility you could not return home to your dog after work one day; we're never promised tomorrow. This book is full of fantastic advice for patients and people to confront their mortality, review their life thus far, see what sort of changes they'd make to live as fully and authentically as possible going forward, and also includes a lot of wonderful information and advice for the healthcare practitioners tasked with giving the bad news and caring for these patients. This book has inspired me further along on my "death journey" - that is, my path to become a death doula among other compassionate jobs, to ease those both with chronic and terminal illnesses, as so many people nearing the end of their life, whether healthy or ill, spend much of their time isolated, which in itself impacts health negatively. This book highlights the importance of the necessary support, love, touch, and compassion that we as people, family, friends, healthcare workers, and society need to impart on those who are nearing death.

[Emily · Rating 4 out of 5]

This book offered profound insights as I navigate my father's Stage 4 cancer diagnosis. Beyond practical information on pain management, the book emphasises the importance of open conversations and physical connection with loved ones before it's too late. The guiding questions in the chapter on Life Review were very helpful, prompting me to review my own life and priorities. The raw and honest sharing of their real stories by the patients and the doctor (who shared the heartbreaking story of his sister fighting cancer) was incredibly powerful. I'm deeply grateful for their courage in doing something so difficult.

[Alli · Rating 4 out of 5]

"The only answer I can come up with is that it is never too early to connect with the people we care about."

Rather than simply being a book about how to die, this is a book about how to live. Often people are afraid to talk about what matters, but I think that sort of candor is a relief, and I found that in this book. It felt empowering to me. This book is worth reading even if you don't know someone who is dying, and it is essential for health care providers.

"And only in confronting the inevitability of death does one truly embrace life."

[Jacqueline S, · Rating 5 out of 5]

a lot of wisdom in this book

I loved this book recommended by a friend. There is meat for serving a dying person in this book. I appreciate it. Have read many on death and dying .I also recommend Easy Death. A lot of wisdom in both.

[Susan · Rating 3 out of 5]

Was hoping to learn more. Such a gravely needed book and subject.

[Maggie Paz · Rating 1 out of 5]

Couldn’t even finish this book. Repetitive and gave me such a negative view of the medical field and the people who work in that system.

[Jordan · Rating 4 out of 5]

This book is what it claims, practical. It is accessible, topical, far-ranging. I believe it is probably best suited for patients, or friends/family of those who may be facing death in their near future, and perhaps for physicians who want a casual refresher on palliative care. It uses mostly case examples to illustrate it's point but there is research as well. I particularly enjoyed the use of myth and quotation to start off the chapters, and thought the author showed an impressive ability to weave together disparate elements to create coherent chapters with an almost arc-like narrative. For recently training physicians who are looking to advance their palliative care practice or for those looking for a more philosophically oriented text, you may be best off looking elsewhere.

[Debbi · Rating 2 out of 5]

A bit rambling and not exactly what I was looking for. Although older, "How People Die" was better.

[Magdelanye · Rating 5 out of 5]

this book helped me a lot when my parents were on their way gone.
there is no facile platitudes here, and some new insight.

[James Hofheins · Rating 4 out of 5]

Have you ever wondered what people with terminal illnesses really want? I'm finding out. What a great book.

And, now I know.

[Angeli · Rating 4 out of 5]

A good and straight forward resources for end of life care.

[Linda]

This is a very important book. Everyone should take the time to read it. This book helped me to better understand what my father needed at the end of his life.

[Paula J. · Rating 4 out of 5]

Helpful guide for navigating the end of life. While geared toward the patient, it was helpful for family members.

[Samantha · Rating 3 out of 5]

Brave topic, yet important.

[Mary Rocco · Rating 2 out of 5]

Too repetitious.