What Does It Feel Like to Die?

by Jennie Dear

A compassionate, honest, and illuminating look at the dying process . . .
 
As a long-time hospice volunteer, Jennie Dear has helped countless patients, families, and caregivers cope with the many challenges of the dying process. Inspired by her own personal journey with her mother’s long-term illness, Dear demystifies the experience of dying for everyone whose lives it touches. She spoke to doctors, nurses, and caregivers, as well as families, friends, and the patients themselves. The result is a brilliantly researched, eye-opening account that combines the latest medical findings with sensitive human insights to offer real emotional support and answers to some of the questions that affect us all.
 
Does dying hurt?
A frank discussion of whether dying has to be painful—and why it sometimes is even when treatment is readily available.
 
Is there a better way to cope with dying?
Comforting stories of people who found peace in the face of death , and some of the expert methods they used for getting there.
 
The last few hours: What does it feel like to die?
Powerful glimpses from dedicated professionals into the physical experiences of people in their final moments—plus comforting words and insights from those who are there to help.

Genres: Death, Nonfiction, Audiobook, Health

256 pages, Kindle Edition

First published June 25, 2019

About the author

Jennie Dear is a writer in Durango, Colorado. She combines her past experiences as a journalist and an English professor to delve into the subjects that seem most important. After her mother was diagnosed with terminal cancer and enrolled in hospice, Dear began to volunteer for hospice. What Does it Feel Like to Die? (Kensington Publishing, June 2019) is based on interviews with researchers, caregivers, and patients, as well as on her own observations.

Dear also co-wrote The Responsible Journalist: An Introduction to News Reporting and Writing (Oxford, 2014), a book that focuses on critical and ethical thinking as it teaches basic news reporting skills.

Reviews

[Linden · Rating 4 out of 5]

Jennie Dear, hospice volunteer, professor, and journalist combines extensive research and her experience as a volunteer with firsthand experience with her dying mother to present a fascinating look at the death process. It’s not always a quick heart attack or a long ordeal with a terminal illness; frequently, people just become so frail that a small illness is fatal. (In the past, many would not have even lived to this point, benefitting from modern medicine.) Also presented is “the idea that great good can come from great suffering is ancient…threading its way through many of the great religions.” Psychologists refer to it as posttraumatic growth, defined as “the experience of positive change that occurs as a result of the struggle with highly challenging life crises.” Don’t be put off by the title—this book is not depressing at all, and offers an enlightening and well-researched exploration of what in American society is still a largely taboo subject: death.

[Kety · Rating 4 out of 5]

This novel reads like an extended research paper on the various aspects of dying. It effectively interweaves serious academic sources and scientific research with personal accounts related to dying. I felt as though it inspired me to reflect quite a bit about my life and those around me. Though I felt it drag a bit towards the end, I found it to be an overall thought-provoking read.

[McKenzie · Rating 5 out of 5]

What Does It Feel Like to Die?: Inspiring New Insights into the Experience of Dying is a surface look at what happens to our bodies and a deep look at what happens in our minds during those first moments we realize we’re going to die and in the time just before we do die.
This is the latest book in a long list of “morbid” books I’ve been reading lately. Not sure if I’ve just stumbled on these books by chance or if I’ve had some sort of subconscious morbidity pushing me towards these titles, but I’ve enjoyed every one in varying ways.
For the first twenty percent I had trouble connecting. I honestly can’t say if it was the writing, the topic, or the fact that it was on a phone. Sometimes reading on a phone makes me read faster and other times it makes me hate technology as a whole so, not much more I can say in that regard. After that, I was pulled into the ideas represented and finished the book quite quickly (after a two-week hiatus).
I think that there is a book for every situation whether that is nonfiction specifically about the topic or fiction that covers just the same feelings with fairies added in. I think this book is hugely important for anyone who is losing someone and is trying to come to terms with what the end of a life means physically and emotionally.
I learned that for the most part death is painless. First let me point out that this particular book is about actively dying in a long-term way. This isn’t a book about instantaneous death or death over a week. This is about a terminal illness that can last years with the patient and the family knowing the whole time that the end is edging its way closer with every breath. Other types of death may be painful, but the majority of deaths that take place over time are painless either because the body is shutting down or because the patient has medication to alleviate the pain.
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[Katelyn Birchfield · Rating 4 out of 5]

4.5 ⭐️s: I read this book to try to better understand what my grandpa felt in his last hours as well as what I fear other relatives might experience. For me, knowledge is comfort, and this book was quite soothing.
It was blunt, there were sections that were hard to read and scary to consider, but it was easy to understand and conveyed the general message that suffering is worse for those watching than those who are experiencing dying. At times the author’s own biases were seemingly attempting to sway opinions, which is the only reason I wouldn’t give it a full 5 stars. Overall though I absolutely recommend this book!

[Heather Erickson · Rating 5 out of 5]

“What Does It Feel Like to Die?: Inspiring New Insights into the Experience of Dying” by Jennie Dear may seem like the last book I would want to read only a few weeks after my husband died of Stage 4 lung cancer in our home on hospice. But I am so glad that I did read it. So many questions I had about my husband’s experience, and our experience as his family, were answered. The author did meticulous research into the things that patients experience at the end of their lives. What she learned has been presented in a conversational, straightforward, yet sensitive manner.

There were times that I had to put the book down to process my memories and what I was learning, but I eagerly picked it up again to learn more. The author moves from the “existential slap” of a terminal diagnosis to the last few hours of life. In between, she covers topics such as patterns in how we die, whether it hurts to die, how to die well, and even “checking out early” which tackles the sensitive subject of assisted suicide.

The bibliography of “What Does It Feel Like to Die?” is huge! There was no repetition and she never used technical language without clearly explaining things in terms that we can all understand. I really appreciated the down to earth way she wrote about the death process and how we can make it easier on patients and family members. She gathered experts in the field of dying and presented a lot of information that I wish I had known sooner, but I’m glad I have now.

During my husband’s death, many people had questions about why certain things were happening. Often someone would present their thoughts on what the answer was. If we had had the information in this book, it could have alleviated many fears and concerns that we had. One of the biggest of these was the death rattle. What is it and what causes it? You will be surprised and also say “Ah, that makes sense!” when you read the explanation for it in “What Does It Feel Like to Die?”

For me, one of the most fascinating topics in the book was the subject of “terminal delirium,” which my husband experienced. In fact, it states in “What Does It Feel Like to Die?” that 60-88% of hospice patients experience it at some point.

We will all die one day, and before we do, we will likely also experience the death of a loved one. “What Does It Feel Like to Die?” is a treasure chest of information about the process, written in an extremely palatable way. I would highly recommend it to everyone—(teens and older). If you have ever experienced someone’s death, this will surely answer any lingering questions you may have about what happened.

“What Does It Feel Like to Die?” will be released June 25th, 2019. Until then, you can preorder your copy, in order to get it as soon as it comes out. Thank you to NetGalley, Kensington Books, and Citadel for providing me with an ARC of this book in exchange for an honest review.

[Jen Tidman · Rating 3 out of 5]

Don't be put off by the title.

Although this isn't necessarily an easy read, it's actually a heartening and reassuring one, along the lines of Atul Gawande's Being Mortal, Paul Kalanithi's When Breath Becomes Air, and Caitlin Doughty's Smoke Gets In Your Eyes.

In What Does It Feel Like To Die, Jennie Dear (a long-time hospice volunteer and daughter of a terminal cancer patient) speaks to doctors, nurses, caregivers, families, friends, and patients to cover the four likely trajectories of death, the various settings death commonly takes place in, assisted dying, that death does not usually hurt, and what the last few hours of death look like.

A few years ago, my Nanna passed away in hospital, and reading Dear's words has made me feel much better about her final days, knowing that she was unlikely to have suffered.

This is a well-written, well-researched book, which will be hugely comforting to anyone who has ever lost anyone or who is losing someone, as well as people who themselves are living with a terminal illness.

Thanks to Netgalley and Kensington Books for the digital copy in return for an honest and unbiased review.

[Joe Sampson · Rating 5 out of 5]

Well written. Explains what it is to die in palliative care.

[Frrobins · Rating 5 out of 5]

This book was not what I was expecting but it was also the reality check I was needing. Being a person who is rather comfortable with the fact that I will one day die but is less comfortable with the fact that I will get old and fragile, I thought this book was going to focus on what happens mentally during the final hours of death. The book took little time in revealing what it truly was, a look at the process of death as a journey and the final stage of life, one that can span over years.

This was initially disquieting enough that it became hard to read, not because the book was bad but because the subject matter is hard to grapple with. It presented the uncomfortable fact that while most of us hope that we will die suddenly in the night in our own bed at the age of 99, for the overwhelming majority of us death will be a long, protracted process. The author, who became a hospice volunteer after her mother died from breast cancer, includes anecdotes from her mother's experiences and her experiences as a hospice volunteer mixed with information about how hospice and the medical system works and research about the process of dying.

This was a broad overview of the strengths and weaknesses of the system we currently have in the US to address the needs of people on their final journey of life and included information on how to make dying less painful and how to help people who are dying maintain dignity and explores the concept of having a good death.

Once I got over my initial anxieties and fears I greatly appreciated the information and perspective offered in this book. By not glorifying what is an uncomfortable and uncontrollable process and by framing it as a journey and describing how people have made it more endurable it helped me to come to terms with the disquieting fact that this will likely be the end journey, as well as one that I will likely bear witness to as others navigate it.

This is a very relevant and needed book with pragmatic and useful information that everyone needs to know. Like it or not, we will all die and the more we know about the process better. Highly recommend.

[John Kennedy · Rating 5 out of 5]

There are plenty of books on dying for the survivors, but sadly not as much on the experience of death from the person living it. This book explores that in a way that's informative while being easy to read. The mix of stories of terminal people and the science that explains exactly what's happening (as far as we know) makes it personal, as death is a part of everyone's life. Death isn't something most people talk about, so is shrouded in mystery. This is a great book that sheds light on how it feels to die.

[Vnunez-Ms_luv2read · Rating 4 out of 5]

Very good book on hospice, what it is and how it operates. It is also a very good read on dying and various things associated with it. I really enjoyed this book and will recommend it highly. Thanks to Netgalley, the author and the publisher for the arc of this book in return for my honest review. Receiving the book in this manner had no bearing on my review.

[Jill · Rating 3 out of 5]

In the Introduction, Jennie Dear notes that "we talk about death and dying a lot in our culture, but that doesn't mean we face our own mortality, or that we talk enough about important aspects of dying, or that we have enough information about what dying is like." In her book, Dear tries to lay out what patients can expect to face in their final months, based on her research and interviews with doctors, nurses, psychologists and other experts, and her own experience as a hospice volunteer and from caring for her mother before she passed away from cancer.

On emotions

Invariably, being made to confront our own mortality - after being given a diagnosis of a life-threatening illness for instance - "precipitates a crisis" for most people. It radically changes our expectations for ourselves, the potential trajectory we see for our lives and this can create a deep sense of anxiety. Dear notes:

"we have a set of expectations and assumptions about life in general, a sense of the world that makes it possible for us to make it through the day, and plan for the future. These expectations are crucial for normal mental health, but they're based on a set of illusions that Lee says include the following: "overly positive beliefs about the self and expectations that there will always be tomorrow, that good people deserve good things happening to them, that it is possible to plan ahead into the future, and that the future looks bright." Most people don't examine these illusions until something deeply disturbing happens - something like being diagnosed with cancer. And when people learn they have a terminal disease, the illusions often come crashing down. "When cancer strikes, the belief system[s] that once provided a sense of stability, familiarity and security are called into question."

The tension that patients with life-threatening illnesses need to hold, is to be conscious and aware of their condition (and its implications), whilst being able to remain fully engaged in life. Dear notes that many patients to manage this and come to have a deeper appreciation of life and a richer sense of who they are.

Dear disabuses us of our expectations on how we might die. While most of us would like to die suddenly, perhaps in our sleep, in reality, our health when plotted on a chart is likely to resemble a wavy line looking like a series of small peaks and valleys that gradually descends to the bottom. Like a patient with a serious chronic disease whose multiple complications bounce them in and out of the hospital, "where each time their recovery is a little less complete until their systems finally fail". Or a patient with long term progressive frailty caused by conditions like dementia, or a combination of serious illnesses, who suffers from years of slowly failing health until their condition reaches such a low level that something like the flu or a broken bone may be the immediate cause of death.

Dear notes that while we are more likely today to die of conditions such as dementia, heart disease or frailty, we haven't had time to create "new cultural stories" centred on these. Indeed, our systems aren't set up for patients with long term progressive frailty. Dear notes that "someone dying from dementia might need daily care for 8 to 10 years, past the point when family and friends are worn out….The health care system isn't set up for people who die of frailty or dementia or other [similar] conditions." For people who might die quite quickly, there isn't a long term need for caregiving. But for someone whose dying process is much longer e.g. advanced dementia, they need "support for staying engaged in meaningful activities as long as possible,… [not to mention] help bathing, dressing and eating." Moreover, Dear notes that thanks to modern medicine and technology, "we seem to have created a larger liminal space where people linger between life and death for longer and longer periods - a time when they know they have a terminal disease but are still very much alive."

Another assumption that Dear overturns is our assumptions about the best place to die. Most people think that they would want to die at home. But Dear points out that circumstances might make home a less than ideal place to die. A hospital might be the best place to die if one's symptoms are "burdensome, or even terrifying, for both patients and caregivers, or [if] they're just too difficult to control at home". A nursing home might be another alternative.

Dear tries to address as many of the unknowns about dying as much as possible. Like whether dying hurts (there is unvariably some kind of suffering involved, including psychological or spiritual distress but most physical pain associated with dying can be controlled, although there are trade-offs in terms of the impact of pain meds on alertness, etc); whether death can be hastened to minimise the patient's suffering from their deteriorating quality of life; what is going on in patients' brains when they are actively dying (the research so far isn't conclusive).

Making choices

Dear observes that for patients in this state of living/dying, the burden often came not from confronting death per se, but from the myriad plans and decisions that had to be made - planning for how their illness might affect their jobs and home lives, planning to provide for their family while adapting to their own changing family roles, making decisions bout their medical care; "just when…patients were at one of the most vulnerable points in their lives, their burdens of work had increased…and one of the largest drains on patients' time and energy…was trying to regain a sense of control". In When Breath Becomes Air, Paul Kalanithi observed that when one is given a terminal diagnosis, one's plans will differ vastly depending on whether we have a month left, 6 months left, a year. How much time is left? How rapidly will the disease progress? This uncertainty makes it challenging for the patient to plan.

Another thing that makes it hard to plan is that one's needs, capabilities and desires shift as their disease progresses. As Dear points out, "the you who now believes dying at home is the best option may be very different from the you who is actively dying at some unknown point in the future. It's hard to know what your needs and wishes will be. It's also hard to know where you will actually spend your last days, whatever your wishes."

Dear emphasises that dying well isn't about being relentlessly positive or having to meet some bar in terms of coping with a fatal diagnosis. Rather, even as patients have to deal with all sort of decisions arising from their illness, leaving them with "less time or energy to devote to living in their remaining months or years", how can they effectively hold this tension and recalibrate as their situation changes? How can the individual continue to feel good about themselves as the disease progresses and takes away the things that they draw self-esteem from (e.g. their appearance, their ability to work and engage in family and social relations, their independence, etc). Related to this, dying well involves learning to let go.

Not the most comfortable kind of book to read - it took me a while to get through as I picked it up, put it down after a few chapters to read something else, then picked it up again - but probably essential reading at midlife.

[Kathleen Ambrose · Rating 5 out of 5]

This well written book answers many questions about the process of dying for both the patient and the caregiver. Some were questions that I did not know I had until I read this book. I found the straightforward explanations and descriptions to be very welcomed even if they sometimes elicited a sharp breath intake when I read them. It reminded me of the time I was discussing with my primary care physician my decision against resuscitation. She agreed with my choice, but to be sure of my decision immediately described a scenario of my arresting right there in the office and what they would and would not do. Made it much more real.
If the only dying we have observed has been in movies or TV, we might be surprised to find that “real life” dying is different. There is a lot of devotion to what happens in the last weeks, days, hours and minutes, all the while embracing the wide diversity of possible experiences. There is a well written chapter on the subject of medically assisted dying. Near death experiences are discussed in terms of what they might tell us about the last moments of dying.
All in all, the book provides not only information but comfort for the patient and for the caregiver. I’m glad I bought this book instead borrowing it from the library because I know I will refer to it again and again in the future.

[Lisa J Shultz · Rating 4 out of 5]

The author talks about what many people want to know but are afraid to ask about dying. She began the book with discussing the four major trajectories and patterns of how we die. The book concluded with what often happens in the last few hours before death. In between, the author discusses coping with a terminal diagnosis and how one might achieve growth and create a legacy of good memories for those left behind. A well-written book on the experience of dying.

[Donna · Rating 5 out of 5]

This book is a keeper...well until it isn't! Wished I'd read it before some friends and family had passed, as there were so many things I didn't understand about the stages of death. Everyone can benefit from this educated writing of Jennie Dear, and be a bit more prepared for the inevitable. Thank you for this ARC from Citadel Press and I will recommend it highly.

[Nancy · Rating 3 out of 5]

This was ok, but I felt the title was misleading in that 1. it wasn't mainly about "what it feels like to die" or 2. any "new" insights.
(I don't think there was anything here I hadn't read/heard before.)

[A'Llyn Ettien · Rating 4 out of 5]

Clear, thoughtful writing about what we know about the process of dying. Good thoughts on hospice care, etc.

[Deedee · Rating 3 out of 5]

Interesting, but was hoping for more stories, instead of loads and loads of "statistics".

[Tina]

Dear writes about available options for the dying and even about possibilities of growth when facing mortality. She often includes stories about her mother's death from metatastic breast cancer.

[Bella Fitzpatrick · Rating 3 out of 5]

Ooph

[Nathan · Rating 4 out of 5]

It's hard to pass up a book with a title like this--c'mon, everyone would like to know what it's like (that doesn't work around it often). Dear asks the same questions you do, and wanted to know what science says about it, how those who've had careers in the field can contribute to the subject matter (consistencies, myths, etc.), so, ultimately, we can do one or more of the following: Approach death with a less fear, understand the process for the benefit of ourselves and others, and to work to stop the suppression of the inevitable event in our minds, as if its some kind of taboo. I'm sure I'm just scratching the surfaces of what one *could* do with the information in this book.

You're likely to start reading with an expectation that the feelings encompassing one's final moments are all that's spoken about here, but there's a bit extra: A decent portion of the book is dedicated to helping us readers understand coping mechanisms for death, a brief education on the current status of the Hospice system (along with nursing homes), how to prepare (the best that you can, of course) for your own death, and much, much more.

It might seem macabre to go ahead and think about getting your affairs in order, but, when you think about it (and Dear certainly helps to illustrate this), *not* doing so is the more ludicrous action. The experience of death, as experiences are wont to be, are not one-dimensional, nor can they be brief. The flux one could experience when facing their last moments, whether that be over the course of hours or years, but there are similarities, and schooling yourself as much as possible on what lies ahead might well prove to be beneficial to someone--whether that's you or not.

So yes, the book does certainly tackle the subject of what your body is likely experiencing when you're actively dying (a "good death", as is described here), but there's a lead-up to it, a buy-in, if you will (other than the buy-in you already did by purchasing the book), of interesting and, at times, captivating words on how we embrace this process with optimum dignity, peace, information, consideration, reverence.

It calls to the forefront some serious consideration on how deeply we burrow ourselves into our daily schedules, commonly out of touch with the fact that we are alive and kicking for a seriously limited time. Dear's work beckons us to consider (and enjoy) our existence on our own time, before some unfortunate affair forces us to do so.

Many thanks to NetGalley, Kensington Books, and Citadel for the advance read.

[Jamie Bee · Rating 4 out of 5]

Scientific and Practical Guide to Death and Dying

As an RN who has seen death firsthand, I was curious about what this book had to offer. The author is a hospice volunteer, so she does have some viable personal insights into death and dying, and she has gone further and talked with medical professionals, some of whom specialize in palliative care, and studied current research into death and dying. She also shares some of her personal experience in dealing with her own mother's death. If one is up for reading the science, I believe that this book would be helpful for those who are newly diagnosed with a terminal illness and for family members touched by such. The book not only looks at the physical aspect dying process itself (insofar as we can know it) but also at coping with it and getting your affairs in order. You’ll learn a little about the hospice system, which is not as well understood as it could be.

I feel like the book should have actually been several books: one just for the person who is dying, one for family members, one for caregivers, and one that speaks directly to the science of it all. At times, this book does feel like it is trying to be too much to too many types of people, so a specialized set of books would be more helpful. For instance, I believe that a simplified, well-organized version would be fantastic for the person who is actually dying, stressing the situations so they will run across in the physical aspect as well as the mental and financial preparation.

I find myself wondering at the statistic that she gave in the beginning, that 90% of us will die after living with a disease for days, weeks, or years. I don't quite buy that, or at least, wouldn’t put it that way. Life is terminal; we will all die. Chronic diseases give one a higher chance for mortality but don't necessarily cause death directly. After all, say, a person with high blood pressure doesn't necessarily die from it even if they've lived with it for years. Sometimes death is sudden, like in a car crash. However, often it is more of an aggregate of certain factors: age, general health, and chronic diseases (co-morbidities) than a specific terminal illness.

All in all, though, I do you think this is a very helpful book for those involved in the dying process. you may want to cherry-pick your way through, picking the nuggets that apply to you and your situation.

I received a free copy of this book, but that did not affect my review.

Read my other reviews at https://www.readingfanaticreviews.com.

[Nicole T. · Rating 4 out of 5]

What does it feel like to die? We don't really know, especially right at the end of someone's life, but it's different for everyone and it probably involves less suffering if people close to death receive palliative or even better hospice care instead of restorative or curative treatment. There you go, now you don't have to read the book. :)

I think I was expecting a more definitive answer to the question the title poses, so the book occasionally feels like "284 pages to say We Don't Know."

Book reviews are personal, and personally, I think about death (my own and those of folks I love) regularly. If you are freaked out by the mere mention of the fact that you - yes YOU - are eventually going to die, you should read this book.

I did appreciate Dear's comparison of death and birth - messy, unpredictable, but ultimately, a natural process that your body knows how to do. I also thought her description of four common trajectories for the months leading up to death was useful.

3.5 stars, rounded up to 4.

[Cari · Rating 5 out of 5]

Death is usually not a topic we all want to think about - but it's inevitable, and I'm hoping that by reading as many books about it as I can, I will be prepared when the time comes. Yes, it sounds morbid, but I figure that was how I prepared for getting married and giving birth, so I might as well keep to the same trend. I've read a lot of memoirs about dying, as well as another book very similar to this one, and they are all very tender and generally comforting. Dear, an experienced hospice volunteer, goes into great detail about the different stages of dying and how we know when our loved ones have reached them. She also describes the different "death trajectories," which was also new for me. The way we die changes based on the reasons for our death. Dear shares personal stories, mostly from her time with her dying mother, and writes in an engaging style.

[Larry · Rating 4 out of 5]

As a popular book at the library I could not renew this and had to return it, so I did not finish. I read chapters 1 & 2, skipped 3-8 and then finished the last few. Most of the middle of the book was less to my interest, but the coda on pages 204-206 was the most interesting. I may borrow it again.

There is absolutely no discussion of religion, heaven, life after death or anything like that. The book is not dark or depressing or morbid, but rather gives a good description of what to look for in the final months and days of a person's like. Dear explains that in many cases those things that might seem distressing or pain are usually more in the mind of the survivor than in the dying person. In general it is pretty comforting.

[Clarissa · Rating 5 out of 5]

This is a helpful read when someone you love is dying. There was some good advice about caring for the dying person, some reassuring information about how painful it is to die, and what can be done about it. But ultimately when a person you care about is dying, there is very little a self help book can do to improve the situation. Interesting information on what medical professionals know about what happens to the brain and body when you die. Read it for science, and if you need to know how to help a person who is dying be as comfortable as possible. The book does explain what is happening in the brain when a dying person sees a light.

[MKF · Rating 4 out of 5]

A more modern book like this still feels outdated when you still use committed suicide. If we really want to approve how we deal with death then we need to change the terms we use when talking about it.

[Andreas Peterson · Rating 5 out of 5]

Very useful and interesting book. The first half/third felt more relatable now in the early stages of aggressive heart disease, but it was also interesting and comforting to read the rest that details more about the dying process and options and such.

[Tricia · Rating 5 out of 5]

Well researched. Easy to understand. Good information on practical items like hospice and spectrum of assisted deaths. Good at capturing psycho/social elements in this last stage of life. Very frank and truthful without being negative.

[Ariel C. · Rating 4 out of 5]

This helped a considerable bit in helping me get over my fear of death.

[Malum · Rating 5 out of 5]

Fascinating look at the process of dying, from physical, mental, locational, familial, etc. points of view.