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At the End of Life: True Stories About How We Die

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What should medicine do when it can’t save your life?

The modern healthcare system has become proficient at staving off death with aggressive interventions. And yet, eventually everyone dies—and although most Americans say they would prefer to die peacefully at home, more than half of all deaths take place in hospitals or health care facilities.

At the End of Life—the latest collaborative book project between the Creative Nonfiction Foundation and the Jewish Healthcare Foundation—tackles this conundrum head on. Featuring twenty-two compelling personal-medical narratives, the collection explores death, dying and palliative care, and highlights current features, flaws and advances in the healthcare system.

Here, a poet and former hospice worker reflects on death’s mysteries; a son wanders the halls of his mother’s nursing home, lost in the small absurdities of the place; a grief counselor struggles with losing his own grandfather; a medical intern traces the origins and meaning of time; a mother anguishes over her decision to turn off her daughter’s life support and allow her organs to be harvested; and a nurse remembers many of her former patients.

These original, compelling personal narratives reveal the inner workings of hospitals, homes and hospices where patients, their doctors and their loved ones all battle to hang on—and to let go.

288 pages, Paperback

First published April 10, 2012

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About the author

Lee Gutkind

90 books90 followers
Lee Gutkind has been recognized by Vanity Fair as “the godfather behind creative nonfiction.” A prolific writer, he has authored and edited over twenty-five books, and is the founder and editor of Creative Nonfiction, the first and largest literary magazine to publish only narrative nonfiction. Gutkind has received grants, honors, and awards from numerous organizations including the National Endowment for the Arts and the National Science Foundation. A man of many talents, Gutkind has been a motorcyclist, medical insider, sports expert, sailor, and college professor. He is currently distinguished writer in residence in the Consortium for Science, Policy, and Outcomes at Arizona State University and a professor in the Hugh Downs School of Human Communication.

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Displaying 1 - 30 of 34 reviews
Profile Image for David Ellis.
11 reviews3 followers
June 26, 2012
Reading these true stories taught me things I didn't know and reminded me of details I have never articulated or read about before. Anyone concerned about how the dying and their caregivers participate in their healthcare choices will find this book enlightening as well as informative. The quality of the writing and emotional engagement of the many contributors makes this book easy and enjoyable to read, although the topic of healthcare for the dying would sound depressing to people who have never had to think about or experience it.
Profile Image for David.
384 reviews10 followers
June 1, 2013
I have spent most of fifty years as a Christian pastor, involved in the lives of people from birth to death and through some of the most troubling times in between. This collection of essays is a tribute to the dialogue that has been going on in the medical profession, and ordinary people since Dr. Elizabeth Kubler-Ross began talking with patients about dying more than 50 years ago. What is a "good death"? Several times the often used word of closure comes up, but on the few times it does it is thrown away as a useless concept--just as Kubler-Ross would talk of "stages" of dying and the inept human being among us would use that like a check-list for take off into the great unknown. Life, and death, are never neat and tidy. As one essay puts it plainly--we came into the world among shit and piss, and we go out in much the same way.

These essays are all about how human beings die, but each one is unique. Some will cause discomfort, others tears, some will make the reader angry. They are real stories of the old and young told from many perspectives. Like Kubler-Ross' anecdotal accounts, they are not meant to be scientific studies. They are meant to share the experience of individuals who have been intimately touched by death.

Like buying a life insurance policy, reading this volume is a stark reminder of our own mortality. In the end, it is well worth the effort, and it may pay dividends to those we will one day leave.
Profile Image for Joy.
420 reviews
January 21, 2013
616.029 04/2012 OPL True Stories About How We Die. I seem to be reading a lot of death related nonfiction books. The paperback book offered opinions of professionals in the field, authors who lost loved ones..hospice and awful nursing home experiences. 111 "Nursing home is high school with dementia." 116 The hospital is industrial; it's a disassembly line." 217 " What matters is not how we die rather why we choose to live." My mind like a tight rubber band..snaps back to Larry and his need to escape MS..the horrid nursing homes..and the best..Johnson County now Evergreen. Where he could go into the interior garden area and sit in sunlight..once we went out in a drifting snow.. the cat who lived out there all the residents fed bits of food to ..the ladies who planted annuals in the spring and cared for them until the frost came. 116 "I'd give them the sound and view of running water. I would open all paths to peace, to the childhood memories of roaming, to the person's love of the earth. We will still die, but at least we will die on earth."
Profile Image for April.
28 reviews3 followers
February 15, 2013
If you, or a loved one is ever going to die, you should read this.
Profile Image for Leslie.
376 reviews7 followers
January 7, 2017
I find this book difficult to review for several completely personal reasons, but I will take a stab at it nonetheless.

First, I discovered Lee Gutkind by accident. One issue of "Creative Nonfiction" was on Southern Sin - a concept so intriguing I had to impulse purchase it in the Whole Foods checkout line. (It's well worth reading.)

Second, I work with seriously ill patients near the end of life. The stories in this book are all recognizably authentic and quite close to me.

Third, I met Lee to talk with him about one of my concerns about end-of-life communication: the stories told in popular media (books, television, news, etc) largely omit the kinds of conversations in which hospital-based providers (e.g., doctors and nurses in intensive care units, hospitalists, surgeons) make important decisions about treatments like life support for patients who are seriously ill. Without real examples of how these conversations look and feel, families have no general narrative outline to help them structure the experience when they face it. That leaves them at the mercy of the expertise and communication skills of providers, which is highly variable.

This third point is my major critique of the work. Although it tells authentic, gripping stories, it feels like a huge build up to an ellipsis followed by a question mark: ...so what? What should we do about it? How can we help make it better? What is important to people during these times? How do we treat each other well when so much is at stake? How do we learn to grieve our mortality more healthfully? Although there are no firm answers, it is critical to begin to give the public enough of an idea of what is happening that it can engage in a dialogue with medical providers and policy makers about how to craft better systems of care, and to train providers better able to meet patients and families where they are during life-threatening illness. Despite all the furious debate over health care policy, this dialogue has not yet begun. I hope that Lee's passion and future work will contribute to the foundation for this dialogue.
Profile Image for Nina.
Author 10 books72 followers
August 5, 2015
The 22 essays in this book give several different perspectives on end-of-life issues, yet the common thread sewing them together is that there must be a better way. There are essays by family members and by medical professionals, which highlight how ill-prepared healthcare providers are to address the end-of-life with patients and family. I devoured this book, going back to re-read many sections. The one essay that grabbed me and refused to let go is by Eleanor Vincent. She talks about the agonizing decision to give permission for her 19-year-old daughter to be an organ donor. Vincent shares the questioning and doubt that occurs after the fact, which would be useful for organ donor programs and counselors to know. I was so moved by the essay that I immediately ordered her book.
Profile Image for Pixismiler.
295 reviews2 followers
October 23, 2013
The stories were very true to life. I've been a social worker in an acute care hospital for almost four years and related to so many of these stories. I think this is a book that everyone needs to read and could benefit from it. It helped me see clearer what my patients and families are asking of me. The picture of health care in the world is a very sad one where we value quantity over quality to an extreme and detriment sometimes. Very good read. I encourage everyone to read it.
Profile Image for Dorothy Mahoney.
Author 5 books11 followers
October 31, 2019
An assortment of essays detailing the experiences of doctors, nurses, health care workers and
family members. The subtitle: "True stories about How we die" reveals that there is honesty and
also much grief and guilt described by some of the writers. Amongst these memories there is also
the gift witnessed by few, of acceptance, releasing and letting go, so that the dying person is at peace with leaving. The introduction by Francine Prose includes the advice to try to read the entire collection at once to get the full balance of experience. The most striking essay near the end of the book, "The Resurrection of Wonder Woman" by Eleanor Vincent is heartbreaking and a good reminder that organ donation is vital.
480 reviews2 followers
June 26, 2021
This was a pragmatic approach to death. A collection of essays by those left behind to deal with the empty spaces loved ones and or patients leave behind. These were sobering accounts thoughtful and reflective from healthcare providers to parents, siblings and friends. A frank and honest discussion should be had, rather than using aggressive interventions to painfully prolong the inevitable.. although each to their own. After all that's what it comes down to... choice.
January 19, 2018
Our Need To Know

These stories help us understand something about death and how to face it with loved ones, and with strangers, and for ourselves. It isn't morbid -- it's life. It has a beginning, and it has an end. Always.
4 reviews
July 19, 2018
Very sad

Very very sad but real. Some of the stories were so real that they left in hole in heart. Too sad
Profile Image for Janelle.
83 reviews3 followers
February 17, 2022
I'm wrestling with end-of-life issues on several different levels and this was my attempt to gain some equilibrium and peace. It was helpful.
Profile Image for Ariadna73.
1,719 reviews113 followers
February 28, 2013
Here is my review in my Spanish Blog: http://lunairereadings.blogspot.com/2...
This is a very sad book that shows testimony of different people that at some time in their lives had to accept a loved one's death; and had the terrible task of asking them not to be affraid and to die without remorse.

This book is so sad; it is so sad to have to die! it is so sad to have to give the loved ones permission to die! This is a depressing book; but also a beautiful one. Not everything has to be laughter and happiness. Human lives also are full of sorow; and this book is about it. Of course it is better to read it at noon on a very bright day and only one story at a time. We don't want an overdose of sadness do we?
Profile Image for Metagion.
481 reviews3 followers
August 4, 2014
Most (if not all) have to deal with how the loved one portrayed-be it a father, mother, child, etc. had died and how the survivor dealt with the loss, the grief, the "aftermath." While I liked the stories, I can't help but feel that the ones in which the author(s) of the story were medical personnel (doctors, nurses, that sort of thing) were a bit too *clinical* about the experience at hand. While it's true that Death is "the Final Journey" it's how we feel, see and think about the experience that's truly unique. I wanted more from the standpoint of, say, the morgue attendants, the undertakers, even the cemetery/crematory facilities and even share some of *their* experiences, but this book is still lovely and sad, anyway: everyone has a story to tell, and, someday, someone will tell ours.
Profile Image for Nancy Sharp.
Author 4 books23 followers
January 23, 2014
A powerful collection of stories that are fiercely human. While not every essay engaged me -- some were more dry and academic than others -- I was especially drawn to Eve Joseph's "Yellow Taxi," Diana Flescher's "Mr. Stone," Beecher Grogan's "Simple Gifts," and Therese Zink's "Living and Dying Well." These are universal stories, like it or not, about what it means to face the end of life, and the choices we make as physicians, patients and families to prepare for that inevitable journey with courage and grace.
Profile Image for Matt Soderstrum.
66 reviews1 follower
February 26, 2016
I found this book incredibly interesting. It is basically a compilation of several short stories about people's experience with death - written from several different perspectives - family members, medical professionals, 911 operator, etc... Obviously, some stories seem to "click" better with me than others. It is amazing to me to see the not only the breadth of experiences, but also the many different writing styles this book offers.

If you want to broaden your view and understanding of death, this is worth reading.
Profile Image for Leilani.
382 reviews8 followers
October 10, 2012
This is a powerful collection about dealing with death, with all different types of people contributing. There is an especially beautiful story about one mother's decision to donate her daughter's organs when she died, and the bonds that she created with one of the people whose life was saved because of her decision.
Profile Image for Cindy C.
82 reviews17 followers
May 16, 2013
It's a sad stories. You will fear death and wonder how you are going to die. You will never know that tomorrow death is going to take you away and sometimes it hurt for years before you die.most importantly,you have to learn to let go of your loved ones. It is always to let them go than looking at their suffering when there's nothing you can do.
Profile Image for Alice Chau-Ginguene.
208 reviews6 followers
November 9, 2014
Really good book. Enjoy it a lot. I come from a culture who talks about death a lot. It's great to have such a sober book to talk about the reality and logistic side of death.
I think everyone should read this book and think about the issue of dying with dignity.
440 reviews
December 16, 2013
I really loved this series of stories about the end of life. For the most part it wasn't depressing--although you will cry. Raises some important questions about the end of life and end of life care.
Profile Image for Sonia Gill.
138 reviews3 followers
March 30, 2014
This book should be required reading for all health care students and providers. Actually, it should be required reading for all Americans: we have GOT to change our health care system because the way it deals with end of life decisions is appalling.
Profile Image for Ann Kuhn.
137 reviews5 followers
April 29, 2014
Powerful, thought provoking, and excellent writing about life, death and all the medical places in between. This should be required reading for anyone living in a first world country/with modern medicine.
Profile Image for Marta Pelrine-Bacon.
Author 7 books12 followers
June 30, 2015
Depressing but everyone should read it. It's sad and eye-opening. We may have many things in common or nothing in common but this is something relevant to everyone single one of us. Read it. Though maybe in small doses.
86 reviews
February 28, 2016
Sobering look at various true accounts of how the end of life plays out for about 15 or 20 people as told by friends, family and caregivers. It's nota fast read due to the heaviness of the subject but well worth the time and effort.
Profile Image for Patricia L..
455 reviews
June 7, 2012
True Stories About How We Die from doctors in black lab coats, children, mothers, mostly women writing about real deaths and deep truths. Exquisitely selected.
Profile Image for Charlotte.
18 reviews3 followers
April 11, 2014
A good read for hospice workers in particular. Did not really lend any new insights, but was well written by the many authors.
Displaying 1 - 30 of 34 reviews

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