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About The Book

In this visionary memoir, based on a groundbreaking New York Times Magazine story, award-winning journalist Katy Butler ponders her parents’ desires for “Good Deaths” and the forces within medicine that stood in the way.

Katy Butler was living thousands of miles from her vigorous and self-reliant parents when the call came: a crippling stroke had left her proud seventy-nine-year-old father unable to fasten a belt or complete a sentence. Tragedy at first drew the family closer: her mother devoted herself to caregiving, and Butler joined the twenty-four million Americans helping shepherd parents through their final declines.

Then doctors outfitted her father with a pacemaker, keeping his heart going but doing nothing to prevent his six-year slide into dementia, near-blindness, and misery. When he told his exhausted wife, “I’m living too long,” mother and daughter were forced to confront a series of wrenching moral questions. When does death stop being a curse and become a blessing? Where is the line between saving a life and prolonging a dying? When do you say to a doctor, “Let my loved one go?”

When doctors refused to disable the pacemaker, condemning her father to a prolonged and agonizing death, Butler set out to understand why. Her quest had barely begun when her mother took another path. Faced with her own grave illness, she rebelled against her doctors, refused open-heart surgery, and met death head-on.

With a reporter’s skill and a daughter’s love, Butler explores what happens when our terror of death collides with the technological imperatives of medicine. Her provocative thesis is that modern medicine, in its pursuit of maximum longevity, often creates more suffering than it prevents.

This revolutionary blend of memoir and investigative reporting lays bare the tangled web of technology, medicine, and commerce that dying has become. And it chronicles the rise of Slow Medicine, a new movement trying to reclaim the “Good Deaths” our ancestors prized.

Knocking on Heaven’s Door is a map through the labyrinth of a broken medical system. It will inspire the difficult conversations we need to have with loved ones as it illuminates the path to a better way of death.

Reading Group Guide

This reading group guide for  Knocking on Heaven’s Door includes questions to enhance your discussion of the book as literature, as well as suggestions that may help you open difficult conversations with friends and relatives who are near the end of life.


Topics & Questions for Discussion 

1. Where do you draw the line between saving a life and prolonging a dying? Has your family included a member who “lived too long”? Do you think it is okay to “let nature take its course”? How do you distinguish that from suicide?
2. How did you feel about Valerie Butler’s choice? Was it brave, or not? Do you think it caused her children more or less suffering than her husband’s death? What were the blessings and drawbacks of her unexpectedly rapid death? What were the advantages and disadvantages of her husband’s protracted death, from the point of view of his survivors?
3. Butler writes, “I don’t like describing what the thousand shocks of late old age were doing to my father—and indirectly to my mother—without telling you first that my parents loved each other and I loved them” (p. 2). In this passage she drops her journalistic point of view and turns directly to the reader, using the word “love.” Discuss Butler’s relationship to each of her parents and their relationship with each other. How does each change throughout her father, Jeff’s, illness? Is there redemption? Reconciliation?
4. Dr. Sherwin B. Nuland said of Knocking on Heaven’s Door, “Katy Butler’s astute intellect has probed deeply and seen into the many troubling aspects of our nation’s inability to deal with the reality of dying in the twenty-first century. . . . This elegiac volume is required reading for every American adult; it has about it a sense of the universal.” What do you think makes Knocking on Heaven’s Door feel universal? What aspects of the “reality of dying in the twenty-first century” surprised you?
5. When Katy’s mother, Valerie, asks for Katy’s help getting Jeff’s pacemaker turned off, Katy says, “I felt like my father’s executioner, and that I had no choice” (p. 5). How do you explain this sentiment? Why does Katy agree to help her mother? What resistance do they run into when trying to get his pacemaker turned off?
6. What is palliative care, and how does it differ from hospice care? When Jeff is able to get into a palliative care program, what is the effect on the Butler family?
7. Jeffrey Butler’s “stroke devastated two lives” (p. 31). How? What are the burdens that are placed on Valerie as caregiver? Valerie attends a caregiver support group only once, saying that she cannot spare the time. Do you think that’s the real reason that she decides not to return?
8. If Jeff had lived before the pacemaker existed, Butler notes that “nobody would have called his heart diseased—just worn out” (p. 57). How did the invention of the pacemaker affect modern medicine? How else did medicine change following World War II?
9. When Katy visits her father in the hospital following his stroke, she recounts watching an orderly shave him, saying “he paid close attention to what he was doing and invested the moment, the room, with a presence I can only call sacred” (p. 21). Why is this moment so profound for Katy? Why do you think the orderly’s actions teach her how to love her “helpless, broken, and infinitely slowly dying father” (p. 21)?
10. What were your initial impressions of Valerie? What did you think of her decision to refuse treatment when facing her own illness? How did your view of Valerie change during the course of the book? Did she show courage when she refused open-heart surgery? Should we redefine courage at the end of life to mean allowing a peaceful passing rather than fighting an endless battle against cancer, for example?
11. How did Valerie’s relationship with her daughter evolve? Do you think this constitutes “redemption,” despite the partial nature of their reconciliation? Katy frames this as a common intergenerational conflict; is it true to your own life?
12. In Knocking on Heaven’s Door, Katy Butler describes the “Slow Medicine” movement. What is it? Discuss the ways that Slow Medicine differs from “Fast Medicine.” Why do you think Slow Medicine has gained in popularity? 13. Does technological medicine’s aim for maximum longevity have some benefits? For example, do you have relatives who have benefitted from late-life surgeries? What has been your family’s experience, good and bad?
14. Of her actions during Jeff’s illness, Butler says, “maybe the best thing I did was write my father love letters” (p. 93). One of the themes of the book is the balance between trying to “fix” things and accepting the unfixable with love and grace. Katy spends a lot of time trying to fix things for her parents. Do you think she comes to any self-awareness about the limits of fixing or the value of unconditional love?
15. Butler writes, “Love can look heartless” (p. 211). What decisions do she and Valerie make regarding Jeff’s end-of-life care that could be construed as “heartless” to someone on the outside? Why do they make those decisions? Katy says, “I wanted him to die because I loved him” (p. 195). What do you make of this?

Enhance Your Book Club

1. Butler chose to include Makeda, Queen of Sheba, translated by Jane Hirshfield, as an epigraph in Knocking on Heaven’s Door. Discuss the poem as it relates to your life. Was there a time that you “dived into the great sea” and came up with a pearl of wisdom? Was it worth the pain?
2. To learn more about Katy Butler, read reviews of Knocking on Heaven’s Door, and find out when she’ll be appearing in a city near you; or, to arrange a speaking engagement, visit her official website at
3. Valerie and Katy made the difficult decision to turn off Jeff’s pacemaker. Was there a time you went with your gut when experts were telling you otherwise? How did you know you were doing the right thing? Or did you only know later? Share your story with your book club if you feel comfortable doing so.
4. Can or should we redefine the meaning of hope at the end of life? When hope of extending life (with good quality) is no longer wise, are there other sorts of honest, meaningful hopes for friends and relatives? What kinds of family healing have you seen when it was known that death was imminent or wished for?

Guide to Further Discussion

In Knocking on Heaven’s Door, Katy Butler writes that now, more than ever, we are confronted with questions whose answers “will shape when and how someone we love meets death. . . . We are in a labyrinth without a map” (p. 7). The questions posed below are designed to help you find your way through the labyrinth of modern health care. These are not easy conversations to have, but getting some answers will give you a clearer mind and heart for facing the hardest decisions you will ever have to make.

How to Talk to Doctors

How can you empower your doctor to have an honest conversation with you rather than avoiding the issue, giving treatments that won’t work, or offering dishonest hope?  

• Butler cites Francesco Fiorista, a practitioner of Slow Medicine, as saying “To do more is not necessarily to do better” (p. 59). Keep this statement in mind when speaking to doctors about the proposed course of treatment for your friend or relative. Ask about the pros and cons and any alternatives to suggested treatments and tests.
• Before agreeing to a test, ask: Will the results change future treatment? Is this appointment necessary?
• What about doing nothing? It is often taken as a given that one’s decision is not of how but when to treat. Ask first whether treatment is necessary. What are the goals of the treatment? How will the quality of the patient’s life be affected? Can you watch and wait? Provide comfort care only?
• Ask: What is the typical trajectory of the diagnosis? What can you expect next? Is palliative care an option? Can your friend die at home?
• On page 277, Katy lists the stages of the last chapter of life: fragility, decline, disability, failing health, and active dying. Ask your doctor where your friend or relative is on this path. Have they reached the point where they are likely to return from each hospital stay worse rather than better?
• Before agreeing to surgery, ask about:
1. Recovery time, and whether home assistance or rehab will be required.
2. Risks to cognitive functioning. Get a cognitive assessment before any open-heart surgery or general anesthesia.
3. Level of function after recovery.

How to Talk to Nurses and Other Non-Doctors

“Some of the most important and least glamorous help” Butler’s family got was in “odd-shaped . . . unpaid interstices within the health care system” (p. 38).  

• Ask the hospital staff what resources are available to you as a caregiver and to your friend or relative as a patient. These resources might include social workers, patient advocates, a palliative care team, a bioethics consultant, or the hospital chaplain.
• Nurses often see things that doctors don’t because they spend more time with patients each day. Ask their advice. What do they think is going on? Is death near?

How to Talk to Your Family

“You may not be able to fix your parents’ suffering or make them whole, but you can heal your relationships and help prepare everyone for death” (p. 276).  

• Butler’s brother tells her “I’ve seen it over and over. . . . Everyone jumps on an airplane, they go to the emergency room, and they stand there together. . . . They do it out of guilt, they become a burden, and they accomplish nothing” (p. 16). Schedule a phone conference. List duties and delegate them. Hands-on caregivers are the decision makers. If you live far apart, how can you offer support from a distance?  

• Are you aware of your relative’s final wishes? Speak with each other about those wishes, to ensure that all are of the same understanding. Are you able to execute those wishes?  

• In On Death and Dying, Elizabeth Kübler-Ross writes that “the family’s needs will change from the onset of the illness and continue in many forms until long after the death has occurred” (On Death and Dying, p. 167). What are your needs at the present moment? Do you have concerns that you can share with each other?

How to Talk to the Person Who Is Dying  

• Ask: Have you chosen someone to make medical decisions when you can’t? Do you feel that person has a clear understanding of what you want?
• Butler writes, “The work of death does not start on the day that someone says to you, ‘Your mother is dying.’ No one may ever say this. There may always be another treatment” (p. 276). To this end, it is important to have conversations about the person’s wishes as early as possible. Ask your friend: Do you want to die? What makes life worth living for you? Would you rather die than live in a nursing home?
• Is your loved one ready to have a conversation about their vision of a Good Death? What kind of measures do they want taken on their behalf? And how do they wish to be commemorated?
• In her final days, Valerie Butler asks for time alone with one of her sons. Your friend may want to do the same. Ask how and with whom they want to have visits.

Suggestions for Further Reading

Note: This is a partial list. Please see the Resources section beginning on page 286 of Knocking on Heaven’s Door for additional literature and information.
The End of Your Life Book Club, Will Schwalbe
The Etiquette of Illness: What to Say When You Can't Find the Words, Susan P. Halpern
My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones, Dennis McCullough, MD
On Death and Dying, Elisabeth Kübler-Ross, MD
When Someone Dies: The Practical Guide to the Logistics of Death, Scott Taylor Smith with Michael Castleman
Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, Hank Dunn
For more tips on how to start a conversation about last-chapter-of-life medical choices, visit and

About The Author

Photograph by Camille Rogine

Katy Butler’s articles have appeared in The New York Times Magazine, The Best American Science Writing, and The Best American Essays. A finalist for a National Magazine Award, she lives in Northern California. She is the author of Knocking on Heaven’s Door and The Art of Dying Well.

Product Details

  • Publisher: Scribner (September 10, 2013)
  • Length: 336 pages
  • ISBN13: 9781451641998

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Raves and Reviews

Knocking on Heaven’s Door is a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become."

– Abraham Verghese, New York Times Book Review

“This is a book so honest, so insightful and so achingly beautiful that its poetic essence transcends even the anguished story that it tells. Katy Butler’s perceptive intellect has probed deeply, and seen into the many troubling aspects of our nation’s inability to deal with the reality of dying in the 21st century: emotional, spiritual, medical, financial, social, historical and even political. And yet, though such valuable insights are presented with a journalist’s clear eye, they are so skillfully woven into the narrative of her beloved parents’ deaths that every sentence seems to come from the very wellspring of the human spirit that is in her."

– Dr. Sherwin B. Nuland, author of How We Die: Reflections of Life’s Final Chapter

“This is some of the most important material I have read in years, and so beautifully written. It is riveting, and even with parents long gone, I found it very hard to put down. ... I am deeply grateful for its truth, wisdom, and gorgeous stories—some heartbreaking, some life-giving, some both at the same time. Butler is an amazing and generous writer. This book will change you, and, I hope, our society."

– Anne Lamott, author of Help, Thanks, Wow

"Shimmer[s] with grace, lucid intelligence, and solace."

– Lindsey Crittenden, Spirituality and Health Magazine

"[An] unflinching look at America's tendency to overtreat [that] makes a strong case for the 'slow medicine' movement, which recognizes that 'dying can be postponed, but aging cannot be cured.'"

– Zaineb Mohammed, Mother Jones

"[A] deeply felt book...[Butler] is both thoughtful and passionate about the hard questions she raises — questions that most of us will at some point have to consider. Given our rapidly aging population, the timing of this tough and important book could not be better."

– Laurie Hertzel, Minneapolis Star Tribune

"Butler argues persuasively for a major cultural shift in how we understand death and dying, medicine and healing. At the same time, she lays her heart bare, making this much more than ideological diatribe. Readers…should be sure to pick up this book. It is one we will be talking about for years to come.”

– Kelly Blewett, BookPage

“ A pitch-perfect call for health care changes in the mechanized deaths many suffer in America.”

– Roberta E. Winter, New York Journal of Books

"This braid of a book...examines the battle between death and the imperatives of modern medicine. Impeccably reported, Knocking on Heaven's Door grapples with how we need to protect our loved ones and ourselves."

– More Magazine

"A forthright memoir on illness and investigation of how to improve end-of-life scenarios. With candidness and reverence, Butler examines one of the most challenging questions a child may face: how to let a parent die with dignity and integrity. Honest and compassionate..."

– Kirkus Reviews

“Katy Butler’s science background and her gift for metaphor make her a wonderfully engaging storyteller, even as she depicts one of our saddest but most common experiences: that of a slow death in an American hospital. Knocking on Heaven’s Door is a terrible, beautiful book that offers the information we need to navigate the complicated world of procedure and technology-driven health care.”

– Mary Pipher, author of Reviving Ophelia and Seeking Peace: Chronicles of the Worst Buddhist in the World

"Katy Butler's new book—brave, frank, poignant, and loving—will encourage the conversation we, as a society, desperately need to have about better ways of dying. From her own closely-examined personal experience, she fearlessly poses the difficult questions that sooner or later will face us all.”

– Adam Hochschild, author of King Leopold’s Ghost and To End All Wars

“Intimate and wise, heartbreakingly compassionate, and critically helpful, this is a truly important work that I hope will be widely read. We have lost our way and Katy Butler’s impeccably researched and powerful tale will help eliminate much suffering on the passage to the mystery of death.”

– Dr. Jack Kornfield, author of A Path with Heart

"This is the most important book you and I can read. It is not just about dying, it is about life, our political and medical system, and how to face and address the profound ethical and personal issues that we encounter as we care for those facing dying and death. [This book's] tenderness, beauty, and heart-breaking honesty matches the stunning data on dying in the West. A splendid and compassionate endeavor."

– Joan Halifax, PhD, Founding Abbot, Upaya Institute/Zen Center and Director, Project on Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death

"This beautifully written and well researched book will take you deep into the unexplored heart of aging and medical care in America today. With courage, unrelenting honesty, and deepest compassion, ... Knocking on Heaven’s Door makes it clear that until care of the soul, families, and communities become central to our medical approaches, true quality of care for elders will not be achieved."

– Dennis McCullough, author of My Mother, Your Mother: Embracing "Slow Medicine,'" the Compassionate Approach to Cari

“This book stands as an act of profound courage. It is brutally honest about the nature of relationships, searingly insightful in the potential of healing, and shines and intense light on our ignorance…For that alone, it is an important one to read.”


Knocking On Heaven’s Door is a disquieting book, and an urgent one. Against a confounding bioethical landscape, Katy Butler traces the odyssey of her parents’ final years with honesty and compassion. She does a great service here, skillfully illuminating issues most of us are destined to face sooner or later. I cannot imagine a finer way to honor the memory of one’s parents than in such a beautifully rendered account.”

– Alexandra Styron, author of Reading my Father

"Compassionate and compelling."

– Shelf Awareness

"Butler’s advice is neither formulaic nor derived from pamphlets...[it] is useful, and her challenge of our culture of denial about death necessary...Knocking on Heaven’s Door [is] a book those caring for dying parents will want to read and reread. [It] will help those many of us who have tended or will tend dying parents to accept the beauty of our imperfect caregiving."

– Suzanne Koven, Boston Globe

"Knocking on Heaven's Door is more than just a guide to dying, or a personal story of a difficult death: It is a lyrical meditation on death written with extraordinary beauty and sensitivity."

– San Francisco Chronicle

"[Knocking on Heaven's Door is] a triumph, distinguished by the beauty of Ms. Butler's prose and her saber-sharp indictment of certain medical habits. [Butler offers an] articulate challenge to the medical profession: to reconsider its reflexive postponement of death long after lifesaving acts cease to be anything but pure brutality."

– Abigail Zuger, MD, New York Times

"A stunning book, truthful and its dignified, and it could be a conversation-starter. If there's a need for that in your family -- or if you only want to know what could await you -- then read Knocking on Heaven's Door. You won't regret it."

– Appeal Democrat

“Astonishingly beautiful. [Butler’s] honest and challenging book is an invitation to all people—Christians included—to reconsider the meaning of drawn out deaths and extreme measures in a historic—and eternal—perspective.”

– Rachel Marie Stone, Christianity Today

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