And a Time to Die: How American Hospitals Shape the End of Life

by Sharon R. Kaufman

Over the past thirty years, the way Americans experience death has been dramatically altered. The advent of medical technology capable of sustaining life without restoring health has changed where, when, and how we die. In this revelatory study, medical anthropologist Sharon R. Kaufman examines the powerful center of those the hospital, where most Americans die today. She deftly links the experiences of patients and families, the work of hospital staff, and the ramifications of institutional bureaucracy to show the invisible power of the hospital system in shaping death and our individual experience of it. In doing so, Kaufman also speaks to the ways we understand what it means to be human and to be alive.

“An act of courage and a public service.”— San Francisco Chronicle

“This beautifully synthesized and disquieting account of how hospital patients die melds disciplined description with acute analysis, incorporating the voices of doctors, nurses, social workers, and patients in a provocative analysis of the modern American quest for a ‘good death.’”— Publishers Weekly

“Kaufman exposes the bureaucratic and ethical quandaries that hover over the modern deathbed.”— Psychology Today

“Kaufman’s analysis illuminates the complexity of the care of critically ill and dying patients [and] the ambiguity of slogans such as ‘death with dignity,’ ‘quality of life,’ and ‘stopping life support.’ . . . Thought-provoking reading for everyone contemplating the fate of us all.”— New England Journal of Medicine

Genres: Medical, Medicine, Nonfiction, Death, Science, Psychology, Sociology

413 pages, Paperback

First published January 1, 2005

About the author

Sharon R. Kaufman is Chair of the Department of Anthropology, History and Social Medicine at the University of California, San Francisco. She is the author of …And a Time to Die: How American Hospitals Shape the End of Life.

Reviews

[Erin · Rating 5 out of 5]

This was an assigned reading for my college medical anthropology class but I was glad I had to read it. Kaufman filled this book with real life situations she encountered during her research. You'll read about men and women (not always elderly) who are dying of one thing or another and see how the patients themselves, their families, and the medical staff deal with (or don't deal with) their situations.

Kaufman uses these true stories to show how patients need to make their wishes clear but how they often don't, and how families can choose to respect or not respect those wishes. She shows that the way the medical community operates is often not very "user friendly", but alternately how the choices people make for themselves and their loved ones basically "tie" the hands of doctors and can prevent them from doing what they think is best.

The chapters are basically set up that she briefly tells the reader what examples she will be using, spends the majority of the body of each chapter recounting conversations between patients, families and medical staff before she concludes the chapter with some analysis. She does say what she wants her readers to get out of each part but the majority of the impact I think readers will get from this book is from reading the individual examples.

My fellow students and I agreed that this book would be a useful read for just about everyone starting at perhaps late high school age depending on maturity levels. At some point in our lives we all will probably know/have direct interaction with someone who is at the end of life, and unless we experience a fatal accident, will likely have to make or plan our own end of life choices. This book will help readers understand the complexity involved and hopefully help make them more prepared forwhen it's their turn to make decisions(as much as anyone can actually be prepared for death....).

[Ashley · Rating 4 out of 5]

This was a good, if dense, read that opened my eyes to end of life issues, specifically how death and dying occurs in hospitals. We've all heard about "life support" and "DNR (do not resucitate) orders", quality of life issues, suffering, and the like.

Like most people, before reading this book I had no idea that "life support" or "heroic measures" aren't one specific thing. They are more concepts, and as such, are open to interpretation. Kaufman is an anthropologist, so her approach is a little different than I'd seen before; it's part memoir (though not in first person) since she recounts so many individual stories, part commentary since general thoughts and opinions are expressed, and part a medical/science read since some of the mechanics of illness are discussed, explanations of how life is ended by "pulling the plug", and the various zones of indistinction can be inadvertently crossed into with what science and medicine can now achieve.

As science, technology, and medicine have progressed, Kaufman noticed a startling trend: no one dies from old age in a hospital. You can't cite "old age" as the cause of death on a death certificate. Medicine's unrelenting pursuit of curing ails seems to be a mixed blessing; on the one hand, some diseases that were previously devastating can be easily cured or prevented. On the other, though, the natural breakdown of the body is treated as an ailment or illness that can and should be treated. It reminds me of a similar argument I heard recently about how silly such ailments like "low testosterone syndrome" are; declining levels of testosterone in men as they age is natural; it's simply part of the aging process. That doesn't mean it's something that needs to be cured with a pill or even thought of as abnormal. It's just what happens when you get older.
Kaufman does a nice job of identifying a few key issues and exploring them in depth throughout the book. Each issue is highlighted with an actual story of a hospital patient and their pathway to dying. There seems to be constant pressure in the hospital system for things to happen; back in the day, when someone was obviously going to die, they were cared for in the hospital, but the dying process was allowed to happen naturally. Due to changing insurance reimbursement policies and medicine's need to treat every ailment, this no longer happens. If you're not being actively treated in a way that generates insurance reimbursement, you're discharged. Thus why there seems to be a revolving door for elderly persons between their home/caretaker's home/nursing home and their local hospital.

The tensions between doctors (and other staff) and families who are forced to make difficult treatment decisions about their loved ones is explored and the power imbalance becomes glaringly obvious. The gray zones between what people think they want when they sign advance medical directives, DNRs, or share their wishes with friends and family are often prone to change once the patient finds him/herself in a life-threatening medical emergency. Kaufman noted one patient who had previously indicated they did not want to be intubated and placed on a ventilator nod their head frantically yes when the doctors asked the question again when the patient was in the midst of respiratory distress. When you can't breathe and are conscious of it, how many of us would have changed our minds as we panicked over our lack of air?

Even something as seemingly straightforward as indicating that you don't want CPR can be interpreted differently. Some take that to mean no CPR at all, some interpret it to mean minimal efforts, and some take it to mean everything but using a defibrillator. Similarly, what is "life support"? Is it a ventilator? Feeding tube? Vasopressor medications that support a sustainable blood pressure? All of the above? A combination of the above? Of course, many families' decisions depend on the patient's outlook, chance of recovery, and "quality of life" if that recovery were to occur. But we all define quality of life differently. Is my quality of life your quality of life?

Kaufman also explored specialized long-term hospital units, which are filled with people on various forms of life support who are not expected to recover anymore than their current state. Some are in comas, some are in persistent vegetative states (PVS), some have some level of consciousness. Were their families wrong to continue keeping their loved ones on life support? Should they have let them go? Or is this a good thing?

While Kaufman's book is dense and hard to wade through at times, it raises many important questions. While they aren't necessarily pleasant to ponder, they are necessary. Be sure to read Kaufman's notes throughout the book; she footnotes and explains some of the more complicated medical terminology and references numerous reference sources.

[Jess B · Rating 4 out of 5]

I appreciated how much time the author spent researching for this book, including spending time in multiple hospitals to talk with patients, their families, and basically everyone that was part of the medical staff (although mostly nurses and doctors). It's a fairly easy read and hard to put down.

I didn't agree with all of her conclusions. She seems to be saying that there are big-picture driving forces (powered by Medicare reimbursement rules) that drive when patients get admitted and when patients die. As someone who works in the system (I'm an ICU RN), I think that there is more to it then that. She also said that a lot of what we say in family meetings is to manipulate families to come to a conclusion that will "move them along" a certain "pathway". I thought that was a bit much; I'm hard pressed to come up with examples from my own job where we have tried to manipulate families into letting their loved ones die.

In the appendix, she talked about how anthropologists do research and how it differs from other research. After reading that, I found it a lot easier to put the book into context and appreciate it more.

[Margo]

There’s a lot that goes into a person dying in the hospital besides just the families thoughts and wishes, which can differ between them. There’s hospital bureaucracy and the need to make money, there’s doctors avoiding the word “death”, and there’s a multitude of voices. When people first come to the hospital in a life-threatening condition, they’re automatically put on life-saving tubes, medicines, and precautions. Therefore, death is difficult to define because people can remain “alive” connected to machines for a very long time.

[Marlo · Rating 2 out of 5]

I was interested to read this book since I watched my brother on life support for a day before he died (though it is questionable that he was really alive) before we had to make a decision as to whether to remove the support. This book is all about the hospital system (in the US specifically), all of the "life-saving" measures that have completely changed what it is to die, and how hospital timelines, medicare billing systems and family and patient expectations shape the end of life, and the effects of all of that on the patients themselves. There are multiple actual patient stories in the book, which were the most interesting part. The author explores the attempts to and complexities in coming up with an agreed upon definition of life, which is debated even in the medical community. The book includes perspectives of hospital staff and accounts some of the actual hospital staff -family meetings, in which what the doctors/hospital staff are saying is completely unclear to me. I'm glad I read this book because I think it (or another book like it) is sort of a must know for everyone in the US, because we will all be affected by the system in some way, whether it is a friend or family member or ourselves; although this is over 10 years old and I'm sure many things have changed with the increase in hospice and palliative care. However, it was not what I expected and I did not learn as much as I thought I would about whether someone is really dead, the inside scoop on what the doctors know and you don't, etc. It was very difficult to get through (it was a bit of a chore at times) and I am only giving it 2 stars because I felt like it was disorganized and repetitive. The author divided the book into categories/topics but I didn't think her divisions were distinguishable. I think this book could have been about 1/3 of the length and still included all of the patient stories and the key points.

[Leslie · Rating 4 out of 5]

This is a thoughtful ethnographic study of the dying process of the hospital, more specifically of critical illness (both acute and chronic). Although as a medical provider I chaffed at some of the interpretations, I did not wholly disagree with any of them. She formulates modern death in terms of technological cultural imperatives as well as bureaucratic time pressures. She postulates that Nature has lost its grounding function in shaping our sense of the morality of dying because technology has made Nature negotiable. Thus, choice becomes the determining factor. This book contributed a lot of my thinking on this subject, and increased my awareness of the place of relationship in medical practice--in defining and negotiating symbols and meaning, in managing crisis, and ultimately in honoring people.

[Lisa · Rating 4 out of 5]

This is a must read. It's an eye opener to the challenges we face at the end of life and provides a look at the politics of living and dying in American hospitals. The discourse is different for everyone, but if we are more aware we may be better prepared to shape the end of life to meet our personal aspirations for a decent death.

[Kathy]

This book validates my reaction to the experience I've been having over the past two weeks while my husband's father was in the hospital. A good study, well written. And a very odd mostly American phenomenon.

[Yifei Men · Rating 3 out of 5]

An interesting read on a heavy topic. Wonderful introduction to the healthcare system in relation to end-of-life care. A tad long though, and the later anecdotes don't seem to contribute much to the overall argument.

[Margaret · Rating 1 out of 5]

There were parts that were interesting but it was very dry. I did not finish it.

[Kipahni · Rating 4 out of 5]

this book helped me with my research.

[Kit · Rating 3 out of 5]

Reading this definitely changed my opinions about what I would like happen if I were to need life-preserving technology - but in many places, the book is redundant.

[Cindy Lou · Rating 5 out of 5]

An important book for those working in healthcare, and those not. Learning about the two "pathways" of treatment illustrates how really terrible we (collectively, societally) are at understanding and promoting "natural" death. 27 illustrative patient stories of the good, bad, and really ugly of medical technology, moral and ethical distress, and knowing when to let go

[Ann · Rating 5 out of 5]

Excellent insight and writing.
And clearly reflected our experience in hospital and hospice facility.