A few months ago, a Twitter follower asked us for recommendations on books about death and end-of-life care. The search for great recommendations led us to some tremendous reads that we’ve compiled here to share with all of you. We hope these wonderful books inspire and embolden you to use our Conversation Starter Guide and start the conversation with your loved ones!
The Conversation by Angelo Volandes
“What people need most on this journey is not the promise of the next new technology but rather a guide to help navigate this dark forest in which they will undoubtedly find themselves.”
Knocking On Heaven’s Door by Katy Butler
“When my father was vigorous and lucid, (my mother) regarded medicine as her wily ally in a lifelong campaign to keep old age, sickness, and death at bay. Now ally and foe exchanged masks. Medicine looked more like the enemy, and death the friend.”
Can’t We Talk About Something More Pleasant by Roz Chast
“I wish that, at the end of life, when things were truly “done,” there was something to look forward to. Something more pleasure-oriented…All-you-can-eat ice cream parlors for the extremely aged. Big art pictures books and music. EXTREME palliative care, for when you’ve had it with everything else: the x-rays, the MRIs, the boring food, and the pills that don’t do anything at all. Would that be so bad?”
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
The Fault in our Stars by John Green
“Grief does not change you, Hazel. It reveals you.”
The Shift: One Nurse, Twelve Hours, Four Patients’ Lives by Therese Brown
“I look at her. This is the moment when she will leave my care for good. Mine may be the last familiar hospital face she sees before she goes under and I want her to remember it as calm and present.”
The Year of Magical Thinking by Joan Didion
“Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We misconstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. We might expect that we will be prostrate, inconsolable, crazy with loss. We do not expect to be literally crazy, cool customers who believe their husband is about to return and need his shoes.”
How We Die: Reflections of Life’s Final Chapter by Sherwin B. Nuland
“The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we call all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been.”
The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life by Ira Byock
“Dying doesn’t cause suffering. Resistance to dying does.”
by Paul Kalanithi
“That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.”
Did we leave out your favorite book? Comment and share below your favorite literature on this important topic. Also, check out our latest updated list of books!
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I would also add Tuesday’s with Morrie by Mitch Albom to the list. That book spoke to me like no other in my journey with my father after his passing.
No list of the top 10 “must reads” about death and end-of-life care would be complete without inclusion of “Last Rights: Rescuing the End of Life from the Medical System” by Stephen Kiernan.
The End of Life Book Club
The son’s journey through his mom’s terminal illness, influenced by their exchange of books.
I also like “The Last Lecture” by Randy Pausch. He was very inspiring.
Might I suggest ‘Intimate Death: How the dying teach us how to live’ by Marie De Hennezel?
The distillate of years of experience from a clinical psychologist working in a hospice. Beautifully written and sensitively portrayed, this gives a great insight into people’s reactions to their final illnesses.
Each book helps people. But take the time and listen to your friend, family member when they are going through this grieving process. Being there for them is equally important then recommending a book. And as we know grieving comes in waves, being there whenever needed is the secret of helping.
I found a book about dying that inspired my teenaged daughter in the UK. This is by Sally Nicholls, ‘Ways to Live Forever’. We bought it for our Quaker Meeting Young People.
I would definitely add Lasting Matters by Barbara Bates Sedoric. Lasting Matters is a thoroughly researched and well crafted organizer designed to allow your family members the freedom to grieve in the days following your death rather than making a million decisions. End of life decisions are carefully recorded in advance lifting the responsibility and perhaps subsequent controI wish we would have had this in place and completed before my husband died three years ago. I have recommended it to my readers and family/friends. I will never leave for my children the mess my mother left for me. The fog I was in when my husband died caused me to make rash decisions my more rational brain would never have made. You can purchase your copies of the Lasting Matters Organizer at Amazon or on the website, lastingmatters.com
I think other web site proprietors should take this site as an model, very clean and excellent user friendly style and design, let alone the content. You’re an expert in this topic!
Another book I would highly recommend long before dying happens, is Final Gifts by Maggie Callanan and Patricia Kelley. It would help people become more aware of the dying process and what to expect long before they reach that time in life.
After reading “The Conversation” by Angelo Volandes, I read Jonathan Kozol’s memoir of life with his father, “The Theft of Memory.” Kozol’s attitude surprised me but also broadened my sense of hope. Kozol has been a moral and intellectual hero for many years and undoubtedly treated his dying parents with exceptional love and patience, but I’m not certain that I could behave the way he did.
Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphrey must be on any list of books that claims to cover ALL end-of-life issues and choices.
The books recommended here are excellent and, in fact, I have used several of them as reference material for the book I wrote: Death, Dying, and Modern Technology – Making Informed Decisions at the End of Life.
I also agree with a lot of the recommendations mentioned above by different individuals. I hope that this may be of use to those searching for answers.
I was helped by Mary Beth Willi’s “Learning how to Let Go”. A short primer on the symptoms and signs along the dying process. It can be found at http://www.hospicequestionsandanswers.com
It is short, understandable and very thorough.
As a longtime critical care and hospice nurse, this book touched me deeply because it covers a broad spectrum of end-of-life discussions which eventually will affect everyone to one extent or another. The author provides a highly intelligent historical foundation for recommendations dealing with profound subjects including meaning and purpose. I highly recommend this well balanced power packed book to anyone dealing with seniors, although the principles and recommendations discussed are relevant for life in general at any age.
Which book are you referring to Pam?
Frank Ostaseski’s The Five Invitations: Discovering What Death Can Teach Us About Living is also a worthwhile read to include in this list.
I love the book With the end in mind by Kathryn Mannix.
It feels like there’s been an outpouring of books on end of life recently–boomers who have lost their parents are both the writers and the readers. We know we’re next in line. I recommend Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee, a former nurse and PA turned end-of-life healthcare advocate. She pulls no punches about really difficult topics such as how to escape dementia, getting off the overtreatment conveyor belt, and all the end of life options for a terminally ill person as they go from pursuing a cure to comfort care. Her main message is you have to direct your own care to get the ending you want and deserve, and she tells you how to do it. Lots of yellow highlights in my copy of the book!
I recommend “When I die” by Philip Gould. Beautifully written.
This is a must read ‘ Visions, Trips and Crowded Rooms’ by David Kessler
Generally I do not read post on blogs, but I wish to say that this write-up very compelled me to check out and do it! Your writing style has been surprised me. Thanks, quite nice article.
I wish you would have included: Extreme measures : finding a better path to the end of life, by Jessica Zitter MD. There is also a brief video: https://www.youtube.com/watch?v=CEjUAZTQ70w
It’s ok that you’re not ok, meeting grief and loss in a culture that doesn’t understand by Megan Devine is the best book of the many that I read after suddenly being widowed. Her approach is real and supportive and absent of cliches. Check out her valuable website refugeingrief.com .
Concious Aging by Ram Dass will transform anyone’s thinking about dying in a beautiful way.
Great collection of books for all to read in quarantine time. Thank you so much.
Great collection of books for all to read in quarantine time. Thank you so much.
Thank you so much for your informative post. I need more information like this.
First at Life’s End by Barbara Coombs Lee, a former nurse and PA turned end-of-life healthcare advocate. She pulls no punches about really difficult topics such as how to escape dementia, getting off the overtreatment conveyor belt, and all the end of life options for a terminally ill person as they go from pursuing a cure to comfort care. Her main message is you have to direct your own care to get the ending you want and deserve, and she tells you how to do it. Lots of yellow highlights in my copy of the book!
Does anyone have recommendations for books about dying and pain? To help with situations in which someone has a terminal disease that is also very painful?
Still Here. Embracing Aging, Changing and Dying by Ram Dass is the best and most enjoyable I have found. He has a wonderful sense of humor and love of life so profound that it includes the end of it as well. I would and do recommend this book to everyone not just those of us so we’re in the endgame.
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Everything and anything by Stephen Levine: Who Dies, Meetings at the Edge, Unattended Sorrow, and a whole list more!
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These are all great books. I think some of the best Christian books also talks about end of life. I’m really hooked on the books of https://www.keionhenderson.com/books/ right now and I think it is perfectly and cleverly written for the times.
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“Being Mortal by Atul Gawande” I loved it.
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Strongly recommend “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death” by BJ Miller, MD and Shoshana Berger