When we produced our original blog, 10 must read books about death and end-of-life care (for example Atul Gawande’s Being Mortal) over three years ago, we realized that the universality of the concept of death knits us all together. Whether it be a Haitian laureate living in New York, tending to her dying mother; an Indian-American physician grappling with what it means to be mortal; or a woman who strives to ensure her terminally ill husband’s end-of-life wishes are honored, the fact of the matter is that death and dying is an experience that touches us all. Anybody—no matter their context, background or identity—can offer a narrative about how people engage with the concepts of living life to the fullest in light of their mortality.
Writers from all walks of life continue to lead their readers to mingle with death—get to know it from a distance. They urge readers to familiarize themselves with their inevitable acquaintance (so to speak). Below is a list of books that our audience has recommended to us. Each book, written through vastly different lenses, offers the idea that by confronting death, we all will be more likely to live life with a little bit more intention.
The Five Invitations: Discovering What Death Can Teach Us About Living by Frank Ostaseski
“We can harness the awareness of death to appreciate the fact that we are alive, to encourage self-exploration, to clarify our values, to find meaning, and to generate positive action. It is the impermanence of life that gives us perspective. As we come in contact with life’s precarious nature, we also come to appreciate its preciousness. Then we don’t want to waste a minute. We want to enter our lives fully and use them in a responsible way. Death is a good companion on the road to living well and dying without regret.”
That Good Night: Life and Medicine in the Eleventh Hour by Sunita Puri
“What if I regarded my own death with reverence instead of fear? I wondered. Or, even more radically, what if I had some sort of gratitude for the transience of my life? Would it change what I worried and cared about? Wasn’t it necessary to think about this when I was in the midst of building a life? Or rather, living my life? And the more I thought about mortality and what it had come to mean to others and what I thought it meant to me, I realized that life was simultaneously so vast and so small.”
The Art of Dying Well by Katy Butler
“If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia.”
- From Scratch by Tembi Locke
“’I want you to know love someday. Another love. Your love is too beautiful not to share.’ He said it with ease, not a trace of distress or ambivalence. As if it were the most natural thing for a husband to say to a wife. ‘I want you to live your life.’”
The Art of Death by Edwidge Danticat
“She wanted something in between, just enough time to put her affairs in order and get a few things off her chest. She got her wish. Not everyone gets theirs.”
Do Death by Amanda Blainey
“We could be more authentic, be more true to ourselves, take more risks, spend more time with family, make ourselves happier, be more compassionate.”
Extreme Measures by Jessica Zitter
“It makes no sense to scoop people out of the river when we could go upstream and prevent them from falling in in the first place. The ICU is not the place for these conversations to begin, and yet that is where they are often happening, if they do at all.”
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death by BJ Miller and Shoshana Berger
“There is nothing wrong with you for dying…Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”
Advice for Future Corpses by Sallie Tisdale
“…forgot that I would get old and lose the power that seemed entirely part of me, the power that allowed me to be busy and productive, rear three children, write books in the evening, and still get up and go to work.”
With the End in Mind by Kathryn Mannix
“There are only two days with fewer than twenty-four hours in each lifetime, sitting like bookmarks astride our lives; one is celebrated every year, yet it is the other that makes us see living as precious.”
The Soul of Care: The Moral Education of a Husband and a Doctor by Arthur Kleinman
“The problem, as some suggest, is not that we fail to quantify these experiences [of caring], but that they cannot be quantified, because they are essential human interaction, the soul of what health care is.”
Getting Good at Getting Older by Richard Siegel & Rabbi Laura Geller
“We aren’t young anymore. But we are still revolutionary. We are confronting and challenging assumptions about aging, by living longer, being more active than our parents and grandparents, and simply doing things differently. And in the process, we are changing the way the world sees older people. .”
This list is by no means exhaustive! Comment some of your favorite books below about life, death and everything in between!
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‘How We Die’, Sherwin Nuland, MD
I have read this book several times and it never ceases to amaze me how beautifully Dr. Nuland writes and how well he describes how our bodies age and how we die.
Thanks to The Conversation Project for including my book in this august list. I’d like to invite anyone to download the book’s free discussion guide on my website Jessicazitter.com, under the ”Resources” for ”patients and families” section.
Atul Gawaude “Being Mortal”
Thanks for this summary listing. I have walked to the end with thirty-two loved ones and now at age 86, I see my own transition pending. As a professional long range planner, I researched life from beginning to ending and compiled it all in one book of many I have written on a new philosophy of life I call theofatalism. The book is titled, Better Living, Better Dying. I hope this comment will be accepted and included so a few people can know what I have learned. Thanks.
I am almost there, quickly running out of money if not years, Multiple sclerosis has pretty much robbed me of everything except my mind for which I’m grateful. But the dollars prevent me from buying these books to read. I can only read e-books and 95% of these will not be in the library. I know you must get paid for your work but it is frustrating to see books I would like to read and understand these topics, I feel certain they would be helpful. Thank you for all your hard work and dedication to this “uncomfortable” topic, Joann Scanlon
A
My question is: What were the original ten book recommendations? Thanks for answering. PWM
“Being Mortal”, Atul Gawande, M.D.
A clear-eyed look at aging, the limits of medicine, and about living to the last with autonomy, dignity and joy. A powerful, moving and helpful book.
Here you go https://theconversationproject.org/tcp-blog/10-must-reads-about-death-and-end-of-life-care/
The original list is a link at the beginning of the article.
For those who’d like to deep understand the magnetic pull of our overmedicalized dying milieu…and hence gain actionable insight as to how to avoid it (just in case you don’t feel overly confident that directives and (untested) proxies, and spiritual elevation will necessarily procure the peaceful death we desire)…I’d like to offer my second end-of-life book, The Promised Landing: A Gateway to Peaceful Dying. It completes a lexicon addressing aspects of our everyday world that remain missing from the overall conversation. I’m an independently publishing author, so direct at http://www.AxiomAction.com or of course worldwide from regular sources.
“Awake at the Bedside: Contemplative Teachings on Palliative and End-of-Life Care”
My husband has metastatic prostate cancer and is in steady decline. We are preparing for the end and have been for months. The concept of the ‘good death’ has always resonated for me and I’ve looked to Eastern philosophy as a powerful way to counter the denial of death that is so rampant in our culture. Wonderful to see those attitudes shifting with The Conversation Project and the increasing prominence of palliative medicine. (Check out Brooke Worster’s video: https://www.mdmag.com/medical-news/brooke-worster-from-thomas-jefferson-university-hospital-seeing-palliative-care-beyond-hospice.
And about the book — I’ll let Jon Kabat-Zinn weigh in. “Marvelous. A compilation of essential treasures exploring the face and feeling of utter engagement, compassion, and wisdom in turning toward death.”
I’ll toot my own horn with my A Companion for the Hospice Journey. It just won “honorable mention” in the 2019 Writer’s Digest awards. The judge said, “The author handles complex, traumatic topics with ease, care, empathy, and even a little humor weaved in when needed to blunt the painful topic at hand. Everyone facing the loss of a loved one should be given this book…” And the renowned hospice nurse Barbara Karnes praised it with, “Reading Companion for the Hospice Journey was like having a heart-to-heart conversation about one of the scariest topics I know: dying. This book is direct and comprehensive, yet oh so gentle.”
I’d like to mention my book “Beyond the Veil: Our Journey Home” which is a near-death experiencer’s take on death and dying. It was originally written in 2007 as an on-line training manual for those interested in becoming Transition Guides or Death Doulas. In 2015 I revised it and self-published it as a handbook for patients and caregivers to work together through the end of life and beyond. It is also available as an ebook through Smashwords.com under the title “How to Die Consciously” (often for free). I offer coaching to those working with the information in the book through my website.
Vigil: The Poetry of Presence is a collection of poems from a Hospice Volunteer’s private journal, reflecting her processing and thoughts when sitting vigil in the last 48 hours of life with those who are dying. Deeply meaningful, sacred experiences are shared in poetic form.
Dying Well by Ira Byock…iconic and beautiful
I would also add GONE FROM MY SIGHT, the little blue book that has helped millions of us navigate through the dying process of a loved one. There was no way we could read a novel during those months. We took one day and a time and followed along with the booklet. It was a life saver. https://bkbooks.com/collections/all-products/products/gone-from-my-sight-the-dying-experience
I found the book “Advice for Future Corpses” to be very helpful and practical, with just enough attention paid to Buddhist views on death.
I am a retired hospital chaplain doing end-of life planng workshops. I recommend the 30- minute film I produced in 2015 called “Speaking of Dying”. Many, many individuals and families have let me know how it helped them to see real people (old and young, black and white, patients, family members and physicians) talking openly about all aspects of dying. Many say it opened up conversations with their family members and health care agents.
The DVD has closed captions and includes a resource guide with questions. You can order it here (https://speakingofdying.com/speaking-of-dying-film-dying-well/) or on Vimeo (Speaking of Dying, Living Deeply, Dying Well)
It supports the Conversation Project and all those who want to plan for a meaningful, peaceful ending.
Please read my book, Spirit Matters: How to Remain Fully Alive with a Life-Limiting Illness.
After working in Hospice for 30 years I believe this book will be a treasure for you as you travel the journey through your end of life . It is available on Amazon. Please read the reviews and check out my web sight.
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.