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What Dying People Want: Practical Wisdom for the End of Life

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Dr. David Kuhl's book is the culmination of a ten year research study sponsored by the Project on Death in America. After receiving special training, he listened to the stories of people diagnosed with either cancer or AIDS. Even though his subjects, or "coresearchers" (his preferred term) were of varied marital, sexual, social, financial, familial and cultural backgrounds, their stories revealed common themes. Dr. Kuhl explains what each theme means to his coresearchers and translates their experiences into useful advice for terminally ill people, the people who love them and the health professionals caring for them.
Dr. Kuhl has written a quiet, thoughtful and moving book that is also quite practical. But be forewarned: it's not easy reading. For to acknowledge the dying experiences of others, we must confront our own mortality. Those who take the journey through to the end of the book may discover unexpected places in themselves more comfortably left hidden. But as Dr. Kuhl states, "Living and dying well involve enhancing one's sense of self, one's relationships with others, and one's understanding of the transcendent, the spiritual, the supernatural. And only in confronting the inevitability of death does one truly embrace life."

This book has the ability to change the lives of any person. It is geared towards the terminally ill, however, due to my profession and my past personal experience with the terminally ill, I thought I might reach a better understanding of what one goes through and expects from us when dying but doesn't out right say. Page 18 changed the way I thought about dying. "If I am living the way I would like to be living then my death, if inevitable, shouldn't pose a fear within myself." It is an overall wonderful book that helps us see what we can do to help the person who is terminally ill and helps us prepare to make our lives more meaningful in the case that we are ever deamed that way ourselves. Some people say to become terminally ill was a gift to them, showed them things they'd never noticed before, however noone wants to die. This book is a gift!

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.

This book explores the rational needs of the dying and is well written and easy to understand, in parts engaging though a bit lengthy.
Caregivers,friends,family of dying can gain some insight into the personal and social aspects of some of the issues the dying deal with including coping with pain, cargeivers, friends, family, and finding meaning. Nonetheless,it lacks thoroughness, is somewhat unsystematic and oversimplifies many aspects of dying.The author failed to borrow from many studies now available on hospice and palliative care not to mention social psychology and communication theory.The author seems to believe finding meaning for the dying is critical and achieveable. In this regard, I am reminded of William James belief about "healthy-mindedness"-an unrealistic optimism which is uncanny given the author is critical of how caregivers provide for the dying.
If you want a cursory, rational, unemotional beginners guide to what the dying deal with this is a decent choice but sedulous professionals or serious devotee need look elsewhere.

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When I was diagnosed with congestive heart failure, I was somewhat more stunned than I had expected to be. I knew how many people in my mother's family had died from it, and only two months earlier I had asked my internist if she thought I was heading into heart failure. I knew I had several of the symptoms, and was concerned. She assured me that I did not have congestive heart failure, but I had an upcoming visit with my pulmonologist. When he referred me me to a cardiologist, the cardiologist did tests that were more specific than those the pulmonologist did, and told me that I was in the very early stages of diastolic heart failure. A look through the internet when I got home told me that diastolic heart failure eventually leads to overall congestive heart failure, which is fatal unless the patient dies of something else first. Only 50 % of those diagnosed with congestive heart failure, no matter how early it is caught, are alive ten years later. I spent the first week in shock, crying off and on, not because I am afraid of dying--I am not--but because I knew how my family would grieve, and I especially didn't want to die in front of the grandchildren.

I went to Kindle to see if I could find good books on dying, and latched onto this one. I found it agreed with my philosophy--do not lie to the patient, do not make the patient lie to you, let the patient die in dignity. I had written an impassioned conversation in my only (so far) fantasy novel, between two young men, one of whom saw his grandfather dying while being forced by those around him to pretend he thought he would recover. I wanted to know what I could reasonably expect from my loved ones, and how to bring it to their attention.

My internist kept pointing out to me that at present I am at a very early stage, and probably have ten to fifteen years left in front of me. But I remembered my grandfather, dying suddenly while trimming the hedge, when I was five years old, and I am twenty years older than he was. I knew the ailment was diagnosed early on, because I had a complete cardiology workup a year and a half earlier before major surgery and there was no sign of it then. But that said nothing about my prognosis, and neither did the fact that my son, twenty-five years younger than I am, had already had four heart attacks and three stents.

I reread WHAT DYING PEOPLE WANT several times, finding more encouragement and comfort in it each time I read it, and now I am feeling better emotionally, and I have no problem now excusing myself so that I can go put on my oxygen hose.

This book is a comfort to the dying and to the soon-to-be bereaved. I appreciate the hard work the author put into it, and the many people who cooperated with him as he did his research. I have also read Elisabeth Kubler-Ross, and find her work helpful, but unlike some of Dr. Kuhl's readers, I find his work more useful than hers. I recommend this book very highly.

David Kuhl, MD
What Dying People Want:
Practical Wisdom for the End of Life

(New York: Public Affairs, 2002) 317 pages
(ISBN: 1-58648-119-2; hardcover)
(Library of Congress call number: BF789.D4.K84 2002)

This book is based on interviews with dying people.
Usually they want more than standard medical care at the end of their lives.
They want their lives to be meaningful.
This often involves personal connections with other people.

The author is a physician who has worked with dying patients
in a hospice program over a period of 15 years.
He has participated in the dying process with hundreds of people.

When we are told that we have a life-threatening disease,
time suddenly becomes much shorter:
We are looking at the definite end of our lives.
Before we probably thought of our futures as indefinitely long.
But when we learn that we have a terminal illness,
we want to know "How long do I have?"
We want to prepare well for whatever time remains.

Learning the bad news of our approaching deaths
is often the most traumatic part.
Some were told in ways that seemed worse than death itself.
Some had to take a peek at their medical records
when the doctor was not looking.
Another patient was told in a drive-by manner:
The doctor told her from the doorway without entering her room.
Some doctors are very bad at communicating the fact of terminal illness.
Some patients want to know only a little piece of information at a time.
But knowing the truth is almost always better than being kept in the dark.
We do not want to be 'kept hopeful' by not knowing that we are dying.

The pain of dying is almost always a combination
of physical pain and psychological suffering.
Everyone wants their physical pain treated.
If physical pain is the overwhelming fact of one's life,
then most people prefer death.
But physical pain can almost always be managed.

Once the physical pain has come under control,
we can begin to focus on our emotional and spiritual suffering.
When we are dying, we need time to work thru our interpersonal dynamics.

When we are dying, we do not want to be isolated and alone.
We want to be physically touched.
We want to have meaningful communication
with the people who have been important to us during our lives.

When we are dying, we want to review our lives
to see what meanings we have achieved.

We want the whole truth about our condition
and the likely course of events from now until the end.
We do not want lies and secrets.
We want to be part of a family or other meaningful group.
When we are suffering thru the process of dying,
this is not the time to be cut off from other people.

We want to ask "Who am I?" more deeply than before.
Trivial problems disappear when we are facing death.

We often want some spiritual or religious comfort.

At the end of this book, Dr. Kuhl tells of participating in the death of his sister,
which was more intense than the hundreds of other deaths he attended.
But this personal experience has made it possible for him
to offer others some means of coping with the process
of caring for dying people at the end of their lives.

This book is based on the thoughts and feelings of actual people.
It should be helpful for all readers who will face the deaths of loved ones
--and ultimately their own deaths.
There are no philosophical points to be made.
The wisdom surrounding the approach of death is simple and plain-spoken.
And this book is filled with compassion for those who are dying.

If you would like to discover other books on the last days,
search the Internet for this bibliography:
"Books on Terminal Care".

James Leonard Park, author of YOUR LAST YEAR:
CREATING YOUR OWN ADVANCE DIRECTIVE FOR MEDICAL CARE.

Thoughtful, careful analysis of a very touchy subject. Good for caregivers and those with a loved one who is dying. Even better for those who anticipate knowing a dying person.

This was an excellent book. I genuinely appreciated how the author gave brief but understandable descriptions of different aspects of buddist life and belief so I could comprehend.

I would recommend this book to anyone on a spiritual pathway who wants to understand how living is so important in the dying phase of life.