The Art of Dying Well

A Practical Guide to a Good End of Life

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About The Book

A reassuring and thoroughly researched guide to maintaining a high quality of life—from resilient old age to the first inklings of a serious illness to the final breath—by the New York Times bestselling author of Knocking on Heaven’s Door.

The Art of Dying Well is about living as well as possible for as long as possible and adapting successfully to change. Packed with extraordinarily helpful insights and inspiring true stories, award-winning journalist and prominent end-of-life speaker Katy Butler shows how to thrive in later life (even when coping with a chronic medical condition), how to get the best from our health system, and how to make your own “good death” more likely. This handbook of step by step preparations—practical, communal, physical, and sometimes spiritual—will help you make the most of your remaining time, be it decades, years, or months.

Butler explains how to successfully age in place, why to pick a younger doctor and how to have an honest conversation with her, when not to call 911, and how to make your death a sacred rite of passage rather than a medical event.

This down-to-earth manual for living, aging, and dying with meaning and even joy is based on Butler’s own experience caring for aging parents, as well as hundreds of interviews with people who have successfully navigated a fragmented health system and helped their loved ones have good deaths. It also draws on interviews with nationally recognized experts in family medicine, palliative care, geriatrics, oncology, hospice, and other medical specialties. Inspired by the medieval death manual Ars Moriendi, or the Art of Dying, The Art of Dying Well is the definitive update for our modern age, and illuminates the path to a better end of life.

Excerpt
Doug von Koss was born in the Depression and raised on the banks of the Mississippi River in a houseboat his father built from salvaged lumber. In the 1960s he settled in San Francisco, where he and his wife, Clydene, raised their son and daughter. He made his living as a stagehand, theater carpenter, light board operator, and set dresser for films like George Lucas’s Return of the Jedi. He’s now eighty-five, tall, elegant, and commanding. Widowed for a decade, he lived in a neat, rented bungalow on a hilly San Francisco street.
In his fifties, while he was working as prop master for the San Francisco Opera, he led a workshop in mask making at a men’s conference in the redwoods of northern California. The men,
who’d just met, nervously labored over their masks in silence, with pinched faces and little joy. The poet Robert Bly, one of the conference organizers, nudged Doug’s arm and said, “Get them singing.” Doug drew the men outside. After twenty minutes of belting out camp songs under the redwoods, the men loosened up, started talking with each other, and returned to sculpting their masks with abandon. Ever since, Doug has been flying around the country, helping groups build community by leading them in traditional songs, chants, and poems that he’s gathered from cultures around the world.
Not long after his seventy-ninth birthday, Doug found the steps up to his front door growing steeper by the day. At first, he brushed off his fatigue and breathlessness as normal aging. Then one midsummer afternoon, as he was pushing a shopping cart through the supermarket, he felt light-headed, dizzy, and short of breath. He trundled over to the one place where he could sit down: the do‑it-yourself blood pressure machine near the pharmacy. He doesn’t remember now whether his reading was too high or too low, only that it wasn’t good.
The next morning in a medical building downtown, his doctor stopped in the middle of recording Doug’s electrocardiogram and called an ambulance. EMTs took Doug down the elevator on a gurney. Twenty four hours later, in a cardiac lab at a nearby hospital, doctors inserted a small tubular metal cage called a stent into an artery leading to the heart’s largest blood vessel. “One of the main vessels was plugged,” Doug said. “I could have gone belly up.” He’d been millimeters from a heart attack.
The stent pushed aside a clump of fatty plaque, propped open the artery walls, and increased the flow of oxygen-rich blood to Doug’s heart, body, and brain. He found it almost instantly easier to climb his front stairs. “Life became incredibly sweet,” he remembered. “I could stop and look at a tree, look at a flower, and really see it. I felt really alive, and at the same time very fragile.”
The stent, he sensed, was a temporary reprieve. Why, he wondered, had fat, cholesterol, and calcium congealed in his arteries? He didn’t smoke or drink, never touched bacon, and rode his bike
in Golden Gate Park three times a week. “But I got the message,”
he said. “Pay more attention, Doug. There’s a line between disease and optimum wellness, and you’re sliding into disease.”
His hospital offered a four-month program of intensive cardiac rehabilitation, paid for by Medicare. Three times a week at a rehab center, he strapped on a heart monitor and pedaled a stationary bicycle while a physical therapist helped him gradually increase his heart rate. A dietician nudged him toward the Mediterranean Diet—less meat, dairy, sugar, and packaged foods; more vegetables, whole grains, olive oil, fish, and fruit. That, combined with more strenuous exercise, halved Doug’s risk of having a heart attack or dying within five years—and more importantly, it substantially extended the years he will probably spend thriving.
When the cardiac program ended, Doug joined a Y and started running on a treadmill three times a week. At eighty-two, he began lifting weights. “I looked around the gym and saw men and women,
 whom I knew were as old as I was, walking very vigorously,” he said. “I wanted that, too.” He built muscle and improved his balance— crucial capacities, given that muscles naturally wither with age, agility lessens, bones grow brittle, and independence can be devastated by a fall. “It started a great wellness loop,” Doug said. “More exercise, healthier eating, better sleep, and an improved sense of wellbeing.” At a recent checkup, his doctor said, “Don’t change a thing.”
The health stage I call Resilience, sometimes called “young” or healthy old age, is a time when you still have the physical capacity to reverse substantial health problems. Most people in the Resilience stage are in their fifties, sixties, and early seventies, but some are exceptionally athletic older people, like Doug von Koss. Length of life is impossible to predict precisely, but people at this stage usually have at least another decade left to live.
This is the time to take inventory, build reserves, and assess what needs shoring up. The major threats to your future well-being will be: physical weakness, isolation, heart disease, lung disease, diabetes, and dementia. You can build bulwarks against them—and prolong your time in Resilience—by exercising, eating better, and widening your circle of friends and passionate interests. Lifestyle habits— especially smoking, being sedentary, eating poorly, and drinking too much alcohol—are responsible for 70 percent of the degenerative diseases that make later life difficult. Change these habits, even after the age of fifty-five, and you can cut your health risks as much as sevenfold—a better payoff than almost all drugs.
I don’t mean to suggest that food asceticism and strenuous exercise will ward off death and decline forever. They won’t really make you younger next year, though they may keep you happier, stronger, and more functional. Given that our bodies age at the cellular level in more than five thousand specific ways, there’s little point in strengthening physical muscles without developing the spiritual and social strength to cope with the inevitable loss of powers, and with death itself. But before you must accept the things you cannot change, you can seize the time to prepare for what’s ahead, and to change the things you can.

BUILDING RESERVES
In developed countries, few people die of disease in the first half of life. Most early deaths result from accidents, violence, drug overdoses, and suicide. In late midlife, the picture changes. Cancer becomes a major cause of death in the mid-forties and continues to climb throughout the fifties and sixties. Deaths from heart disease rise in the sixties and seventies, from lung disease in the eighties, and from dementia in the nineties. All cause physical suffering long before they kill, and all are profoundly shaped by how you live.
I suggest you begin by doing what requires the most of you and the least of medicine. The most effective first step (other than quitting smoking) is to walk energetically every day. People over sixty-five who do so increase their lung capacities, get more oxygen to the brain, and expand the size of the hippocampus, a brain organ crucial to memory. As a side benefit, walking around malls, Farmers Markets, and to downtown coffee shops amplifies social connections, another delightful way of improving health, brain function, and happiness. Most of this is not news. But if you’ve forgotten the deep pleasure and self-confidence that can follow half an hour or more of aerobic exercise, especially in nature or with a friend, consider reacquainting yourself. Even late in the game, getting more active has huge health benefits.
Exercise becomes more challenging as joints grow creaky and minor injuries heal more slowly. Improvise, adapt, and overcome: get moving in any way that makes you break a sweat and gives you joy. Many people find delight in ballroom dancing, biking, or swimming; others find it easier to get started—and to keep going—by scheduling a regular exercise date with a friend. If your
feet or knees hurt, consider upgrading shoes or improving your posture or gait with the help of a podiatrist, a physical therapist, or a practitioner of an alternative approach, like Feldenkrais or the Alexander Technique. Stay flexible and be willing to substitute a new activity whenever one falls by the wayside: if you can’t run anymore, try water aerobics; if you lose your partner, explore group activities like Greek or country line dancing. No matter what happens, keep going.

The body’s capacity to heal, even at this relatively late date, is astounding. Tom Murphy, a former Associated Press journalist who’d once run a marathon, was sixty-two when he was diagnosed with diabetes. He’d been working a stressful and unsatisfying job and, he said, had “fallen into my mom’s habit of eating mostly cookies and ice cream, frozen pizzas, Danishes, and lots of bread.”
He took a new job and moved from the San Francisco suburbs to rural Mendocino county. By the time he met his new primary care doctor, he weighed 225 pounds and had a trifecta of late-life warning flags: high cholesterol, high blood pressure, and high blood sugar. His alarmed physician recommended he see a cardiologist immediately and start taking a cholesterol-lowering statin, a blood pressure–reducing diuretic, and the blood sugar–lowering drug metformin.
Tom looked at his friends and family, many of whom were already on these drugs, and saw his own future. “I have a friend who went blind from diabetes, another who can’t walk, and a third who died of a heart attack,” he said. “All could have changed their diets in their fifties, but waited too long. I wasn’t going to make the same mistake.”
He took blood pressure medication to lower his stroke risk, but asked for a grace period before adding other medications. What followed was, he said, “a very emotional three months. Changing how I lived and ate became more important than work, friends, reading, even my marriage.” He jogged a mile and a quarter every morning, starting at a snail’s pace and gradually increasing his speed and distance. He stopped eating all foods with added sugar, and other “things that had made my life ‘richer.’ ”
He struggled to change his sleep patterns. He experienced the highs of exercise and the lows of accompanying muscle pain. He wrestled with the drug-like withdrawal effects of quitting sugar, and, as he put it, “the stress of facing multiple life-threatening diseases.” To keep going he kept a diary of what he ate and when he exercised, and turned for support to his wife and to a friend who successfully managed her Type 1 diabetes without medication.
Three months later, his cholesterol level was normal for the first time in his life, and so was his blood pressure. His blood sugar levels have fallen more than a third and are now just a hair above normal. His diet is based on fresh vegetables from his wife’s garden and smaller amounts of lean turkey, cheese, brown rice, whole wheat bread, and sugar-free jam. Every day he jogs two miles and rides his bike. He weighs 170 pounds and takes no medications. “Yes, it was hard,” he said. “It’s still hard. But my doctor is very happy and I’m never going back.”

FINDING ALLIES IN PREVENTIVE MEDICINE
The most helpful physician at this stage is a good primary care doctor who will coach you to prevent disease. It’s not enough to get a yearly lecture on smoking, drinking, or your weight. You want someone who will enthusiastically refer you to physical therapy, or to an effective support group, such as Alcoholics Anonymous, a smoking cessation group, or the diabetes prevention classes offered at many local Ys and covered by Medicare. If your blood pressure, cholesterol, or blood sugar remain high despite lifestyle changes, talk to your doctor about medication: the payoffs are significant for people with a decade or more of life ahead.
The need for a geriatrician—a physician who specializes in the aging body—may not yet seem urgent. But one way or another, it’s crucial to find a doctor who cares about you as a whole person long before a health crisis. Many fine doctors who refuse new Medicare patients will continue to treat older people with whom they have established relationships. Look for someone who genuinely cares about his or her patients—and if you’re not happy, switch. Now is the time to find someone who will be with you for the long haul.
If your primary care doctor is older than you are, consider finding someone younger who won’t retire before you die and has an office close by. (The same goes for dentists, hairdressers, and car mechanics: a twenty-mile drive that is easy today may be harder tomorrow.)
Take advantage of every opportunity to establish rapport with a single doctor who will act as your point person in the world of fragmented medicine that most of us encounter. Ask your doctor to look up from the computer, and to give you a full physical examination. Medicare and some private insurance now reimburse for various “wellness” appointments, including an introductory visit, yearly cognitive assessments, and advance care planning. Use them to help your doctor get to know you well, and to make sure that you share the same goals.

WEIGHING MEDICAL RISKS
Taking advantage of what he calls Medicare’s “bumper-to-bumper warranty,” Doug von Koss has had cataract surgery and two knee replacements. They were great moves, postponing further disability, reducing pain, and keeping him happily driving and exercising. But with age, the risks of many procedures rise. “The physiology of the aging body is different: more vulnerable, and more susceptible to the adverse effects of drugs, tests, and operations,” cautions Iona Heath, MD, a former president of the Royal College of General Practitioners in the United Kingdom. “This is not ageism; it is person-centered care.” Make sure you understand the goal of any proposed treatment: Will it improve how you function day to day, or, in exchange for the hope of more time on earth, are you risking making an existing disability worse? Some people end up with worse pain after back surgery, an outcome common enough to have earned the name “failed back surgery syndrome.” Get a second opinion from a physiatrist or other informed non-surgeon, and before agreeing to surgery, try a year of intense physical therapy or a back pain management program.
Just as it’s a gamble to buy the first year of a new car model, it is dangerous to be a guinea pig for a medical innovation. Many new medical devices targeted at aging people enter the marketplace with little vetting, thanks to a loophole in Food and Drug Administration (FDA) regulations. Some of these grandfathered-in devices, like metal-on-metal hip implants that crippled patients by shedding metal shavings into their tissues, pose “great safety risks,” three eminent doctors warned in the New England Journal of Medicine. “Implanted body parts,” they noted, “cannot be recalled as easily as defective auto parts.”
Above all, guard your brain. It is the keystone of continued independence and freedom. People over sixty are much more vulnerable to “postoperative cognitive impairment” immediately after surgery, and are more likely to still be coping with confusion and memory difficulties three months later. Open-heart surgery requiring hours on a heart-lung pump sometimes fixes a heart valve while wreaking irreversible cognitive damage. You may consider it a poor trade-off to gain extra years of life if you will spend them incarcerated in a locked “memory unit.”

GETTING TO KNOW THE NEIGHBORS
Loneliness is a health risk. It’s common among older people when their close friends and spouses die, marriages and relationships break up, or grown children move far away. A quarter of Americans now live alone, and married women are quite likely to outlive their mates and experience widowhood. If your love of solitude has deepened into isolation, or you are cocooning within a couple, you might consider making a conscious effort to befriend or mentor younger people, especially neighbors. In a pinch, they may be of more practical help than a family member half a continent away.
My neighbor Paul Reck, an eighty-eight-year-old retired contractor, keeps a plastic container of dog treats by the open door of the garage where he builds scale-model replicas of yachts for boat owners. He’s gotten to know all the dogs that pass by on the sidewalk—and their masters. I know I can count on Paul for help putting together an IKEA bookcase or fixing a damaged tea kettle. Paul knows he can count on another neighbor, Barry, for help with his computer problems. Paul’s children live hours away. When he or his wife, Nancy, need help, neighbors will step in.
I suggest you consider your own ways to widen and deepen your next-door relationships and to transform them into sources of mutual support. Can you turn neighbors into friends, and friends into honorary siblings? If you’re single or widowed, might you rent a bedroom to a foreign student, invite a friend to become a roommate, or enter a pact with a friend to support each other in sickness and in health, the way married couples do?
Don’t discount more casual connections, like those formed by babysitting for a younger family down the block, picking something up for a sick friend, or taking in the mail and feeding the dogs when a neighbor goes on vacation. In the future, when you need a prescription picked up or a ride to the doctor, you may feel less shy about asking. Courtesy, neighborliness, and exchanges of favors are pleasant amenities earlier in life. For older people who want to stay in their own homes, they are survival skills.
We live in a society that fetishizes independence—a terrific goal for people in their twenties and thirties. But in later life, interdependence is well worth cultivating. Have you mostly been a “taker,” an “exchanger,” or a “giver”? If you’ve been a taker, think about becoming an exchanger—one who conscientiously keeps track and returns favors, even if a bit mechanically. If you’ve been an exchanger, consider giving once in a while without thought of return. If you’re exhausted by over-giving, consider cutting back on time spent with takers. You need reciprocal relationships now, not people who drain you.
I’ve noticed that people who live well in old age, and die well at home, have often found a “tribe” among their fellow quilters, singers, or church group members. When they get sick, the clan shows up to help, spreading the burden of caregiving beyond a single exhausted family member.

Above all, I hope you find ways to connect with others that give your life joy and meaning. The better you understand what makes your life worth living, the more fiercely you can keep it in mind as a guide to medical decision-making when you get closer to the end of life. “Elders worthy of emulation,” Doug von Koss once wrote, “know they will soon lose life—and so they generously give it away to those around them.” Doug leads a monthly singing group for men. He and some friends regularly perform mystical poems, learned by heart, to benefit local charities. When Doug had knee surgery, a favorite grandson flew out from Colorado and helped for five weeks until he could drive again. Friends a generation younger came over and made dinner. Two members of the all-male singing group he leads—his closest tribe—stand ready to drop everything in an emergency. Because he gives to others, others give to him.

KNOWING YOUR MEDICAL RIGHTS
Contemplating death while embracing life is a difficult balancing act in a culture that until recently didn’t want to discuss death at all. Finding the courage and wisdom to break this silence, with your doctors and your family, will shape how death ultimately finds you. In the words of TED talker Judy MacDonald Johnston, who helped care for two older friends dying of dementia and cancer, “Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days.”
Not long after his near–heart attack, Doug got together with a dozen older people in the home of a friend. He signed papers giving his son the authority to make his medical decisions if he couldn’t make his own and filled out an advance directive, or living will, listing the medical treatments he’d want (and not want) if he were comatose or close to dying.
Most people have already been urged repeatedly to fill out these forms. And 70 percent of us haven’t. Perhaps it might help to think of an advance directive as not just a piece of intimidating paperwork, but an act of spiritual maturity.
Nothing is more profound than contemplating your feelings about how you want to be treated when you are dying, or how much suffering and disability you are willing to endure in return for more time on earth. Nothing could be kinder to people who love you than to give them clear guidance for the hardest decisions they may ever have to make. And little could be more empowering than protecting yourself from unwanted medical treatments that now, far too often, dehumanize modern death.
The struggle to control the deathbed has been amplified by modern medical technologies, but it isn’t new. Throughout history, doctors have sometimes failed to give adequate pain medication, or continued with painful efforts to ward off death, in direct opposition to the wishes of the dying. The medical historian Michael Stolberg recounts in A History of Palliative Care that in 1560, Philipp Melanchthon, a Lutheran minister and a close collaborator of Martin Luther, was close to death. His pulse faded, his hands and feet grew cold, and he drifted in and out of consciousness. His physicians repeatedly tried to revive him, first rubbing his limbs, then trying to sit him up, and then anointing him with stimulants. The sixty-three-year-old Melanchthon protested, “Why do you hinder my gentle peace? Just give me peace until the end, it won’t be long now.” He died shortly thereafter.
In 1791, the Comte de Mirabeau begged his doctors for the gentlest death possible. “Give me your word that you will not let me suffer any unnecessary pain. I want to enjoy unreservedly the presence of all that is dear to me,” he said. A leader in the early stages of the French Revolution, Mirabeau, then in his early fifties, was dying of pericarditis, an inflammation of the sac surrounding the heart. A memoir by one of his doctors shows, wrote Stolberg, “just what torments the doctors allowed their patients to suffer out of fear of prematurely ending their lives, and in this case out of a lack of agreement among themselves”—still a familiar problem.
When Mirabeau’s pain grew so severe that he could not speak, he asked for a piece of paper and wrote down the word dormer (sleep). He was pleading for opium, but his doctor, P. J. G. Cabani, pretended not to understand. He relented later that night, but a second doctor in attendance said the time had not yet come. Hours later, when the two men reached agreement, it was too late to get the drug compounded and brought to the chateau before Mirabeau died. In agony, he cried out, “I’m being cheated,” and added “with a mixture of rage and tenderness . . . Oh, the doctors, the doctors! Were you not my doctor and my friend? Did you not promise me you would spare me the pain of such a death? Do you want me to take with me my regret that I trusted you?” These were his last words and, Cabani wrote, they “rang unceasingly in [my] own ears for a long time to come.”
The dying and their families say similar things today, and advance directives are the first line of defense. Many people think they can refuse medical treatment only if they’re in a coma or within six months of dying. It’s also widely believed that the law and the Hippocratic oath, especially the phrase “do no harm,” force doctors to prolong life. Neither is true. The United States Supreme Court has affirmed, and all major medical associations agree, that all competent adults have the legal right to refuse any form of medical treatment, or to ask for its withdrawal, at any time, for any reason. It isn’t suicide, assisted suicide, homicide, or euthanasia. It’s letting nature take its course, and it’s your legal and
moral right.

For clarifying these constitutional rights, we can thank the parents of a young woman who worked in a cheese factory in the 1980s. Her name was Nancy Cruzan, and she was twenty-five. On a cold January night in 1983, she was driving home alone from a bar outside Carthage, Missouri, when her car skidded on ice and plunged off the road. She was thrown from her car and landed facedown in a water-filled ditch. Paramedics arrived about fourteen minutes later, pounded on Nancy’s chest, shocked her heart until it resumed beating, and forced air into her lungs until they began to rise and fall. But Nancy was too brain-damaged to ever again speak or recognize her family. Incapable of eating or swallowing, her body was kept alive by a feeding tube in a state-funded nursing home. But the “self” that her family recognized as Nancy Cruzan was gone.
Six years later, against opposition from the state of Missouri, her devout Catholic parents petitioned the United States Supreme Court for permission to remove the feeding tube that kept their daughter suspended in what one of her doctors called “a living hell.” A deeply divided Supreme Court affirmed that all intellectually competent people have the right to refuse medical treatment. A feeding tube, the high court clarified, is a medical treatment. But Missouri could require “convincing evidence” of Cruzan’s wishes. (This, and similar rulings, gave rise to the living will.) In 1990, a Missouri lower court accepted additional testimony and permitted the removal of the feeding tube. A day after Christmas,
seven years after her fatal accident, Nancy Cruzan was released from the long, technologically interrupted process of her dying.
The Cruzan decision introduced many laypeople to one of the four pillars of medical ethics, that of patient autonomy: the right to determine and refuse medical treatment. (The other three pillars are treating patients justly; benefiting them; and not harming them.) A doctor who agrees to end an unwanted treatment is not violating the Hippocratic oath. She is honoring your autonomy.
The practical reality, however, is that if you don’t have the right paperwork, the default protocol in most emergency rooms will be to do everything possible to ward off death, even when doing so
is fruitless and amplifies your suffering. Treatment often does not stop until someone says “enough is enough.” The following two documents will help you, or those who speak on your behalf, to do so with confidence.

The Durable Power of Attorney for Health Care appoints a medical advocate or decision maker (technically called a “proxy,” “medical power of attorney,” “health care agent,” or “surrogate”) to speak for you if you can’t speak for yourself. The ideal person lives nearby, knows what matters to you and is willing to assert it, is willing to drop everything in an emergency, gets along with people, and has a strong backbone. Many people choose a spouse or child, but the best choice isn’t always a family member. Because I fear that my husband, Brian, may be emotionally overwhelmed if I am gravely ill, I have chosen a friend whom I’ve known for thirty years. She keeps a cool head, follows through on her commitments, understands my values, communicates clearly, and has no problem with being assertive.
A Living Will or Advance Directive is the next line of protection. This boilerplate document usually covers only moral and medical dilemmas that arise if you are comatose, close to death, or “unlikely to recover.” They rarely cover deactivating internal medical devices like defibrillators, or how to make decisions in case of dementia. You can amend yours however you want to, as it will mainly serve as an informal guide for your medical advocate. If you want stricter, more binding limits placed on medical treatment, you or your advocate should ask your doctor to fill out a do-not-resuscitate order (DNR) and a form called a POLST or a MOLST (Physician or Medical Orders for Life-Sustaining Treatment).
These documents are signed by a doctor and are more scrupulously honored than advance directives. They are appropriate for all people in frail health, and are fully discussed in Chapter 5, “The House of Cards.”
You can get free advance directives from your health plan, and online from the Conversation Project or Mydirectives.com, which will email copies to anyone you want informed. If you are hesitant, I highly recommend “Five Wishes,” available for five dollars from AgingwithDignity.org. Clear and simple, it will help you imagine and describe your vision of a “good death,” asking, for example, whether you’d like your body massaged with oil, and what poetry, if any, you’d like read to you. Here are some samples:

My Wish for How Comfortable I Want to Be
(Cross Out Any You Do Not Want:)
•• I wish to have warm baths often. I wish to be kept fresh and clean at all times.
•• I want my lips and mouth kept moist to stop dryness.
•• I wish to have religious readings and well-loved poems read aloud when I am near death.

My Wish for How I Want People to Treat Me
(Cross Out Any You Do Not Want:)
•• I wish to have pictures of my loved ones in my room, near my bed.
•• I wish to have my hand held and be talked to when possible, even if I don’t seem to respond to the voice or touch of others.
•• I wish to die at home, if that can be done.

My Wish for What I Want My Loved Ones to Know
(Cross Out Any You Do Not Want:)
•• I wish to be forgiven for the times I have hurt my family, friends, and others.
•• If there is to be a memorial service for me, I wish for this service to include the following (list music, songs, readings, or other specific requests that you have).

Forms are only symbols of the conversations behind them. More important than paperwork is making sure that your family and closest friends accept the reality of death and commit to following your wishes. When there is no consensus within the family, hospitals often listen to the loudest voice in the room, which often means continuing unwanted treatment. To avoid this, I recommend you talk around the kitchen table with people you love, perhaps every New Year’s day, sharing stories of deaths that have frightened or inspired you. It may take some family members years to get comfortable with the reality of your eventual death, so give them time but revisit the subject regularly. Go beyond the dry details covered by advance directives, and talk about your ultimate goal: a “good death,” whatever that means to you. Do you want to die at home with your dog on the bed? Do you hope to be conscious enough to give your last words and final blessings, or are you more concerned with pain control, even if it makes you drowsy? Do you want to leave a good emotional legacy, by making sure that loved ones are not traumatized by the circumstances of your death? One single woman I know met at a cafe with the friends who’d agreed to be her health care agents and hashed out the details for over an hour before filling out the forms over muffins and coffee.
Once you complete the forms, don’t just leave them in a file at home. At a minimum, send copies to your primary care doctor or health system, to family members, and to anyone you’ve named to be your advocate. If you simply can’t bear to fill them out, I suggest handwriting a letter to whomever will probably make your medical decisions—and mailing it. Tell them what makes your life worth living, and what medical care you’d decline if you could no longer live such a life. Is it crucial to you to love and be loved, to express yourself in words, to garden, to feed yourself, or to sew? What degree of dependence, loss of freedom, pain, or discomfort would be too much to bear? Contemplating your future vulnerability and accepting your mortality shouldn’t be minimized as merely checking boxes on a legal form. It is a modern rite of passage.

Doug is a creature of habit. Every morning he makes his bed, meditates for twenty minutes, and does his own form of affirmative prayer. He reminds himself that he loves himself and his grandchildren unconditionally and lets “God’s love, peace, glory, and light” flow through him. He lights a candle and sends prayers to friends whom he knows are sick or close to dying. He makes a mental list of what he’s grateful for: that he has a roof over his head, that the wolf is not at the door, that he’s got another day to play.
The first two-thirds of life are usually dedicated to learning skills; building a life, a career, and a family; and achieving worldly status. The last third of life has developmental tasks of its own. These generally involve shifting from individualistic striving to greater generosity, and reflecting on what all that work meant. The challenge, and the satisfaction, is to give back to the world something of what you’ve learned and become. Quiet reflection can aid in the shift from self-absorption to generosity, from striving to letting go, from mourning losses to accepting what is.
Many people return to their childhood religions in later life, or explore other approaches to spirituality. Consider doing so, perhaps by spending half an hour in silence at the same time each day. You might get up before the rest of the household and find a private spot that you can make beautiful with a flower, photo, or view. Some people just sit, enjoying the sensation of breathing, and letting their thoughts come and go. Others say prayers, read poetry or religious texts, or follow a recorded guided meditation. The key is to find a practice that nurtures you, and to do it faithfully, at the same time each day, until your body gets used to the routine. Daily rituals of simply being rather than doing become more important as time goes by. When death comes, you need to be comfortable with simply being, because there is nothing left to do but let go.
Consider making the contemplation of death a part of your spiritual practice, as do many wisdom traditions. It won’t make you die any sooner and it may help you appreciate your life today more keenly. “I am of the nature to grow old,” goes a chant repeated each day by monks and nuns in many Buddhist temples:
There is no way I can escape growing old.
I am of the nature to get sick. There is no way I can escape getting sick.
I am of the nature to die. There is no way I can escape death.
Everything and everyone I love will change. There is no way I can escape being separated from them.
My deeds are my only companions. They are the ground on which I stand.

Around the world in the autumn, during Rosh Hashanah services, Jewish congregations recite that only G-d knows who, in the following year “shall perish by fire and who by water; who by sword, and who by beast; who by hunger and who by thirst.” A human being is “as the grass that withers, as the flower that fades, as a fleeting shadow, as a passing cloud, as the wind that blows, as the floating dust, yea, even as a dream that vanishes.” I find these natural images beautiful and comforting. They remind me that transience, sickness, aging, and death are not the signs of failure they’ve come to seem in our can-do society. We are part of an eternal cycle of birth, growth, and decay.

Ways to Prepare:
•• Build your physical, social, and spiritual reserves, start planning for a good death, and reverse health problems while you still can.
•• Start with what requires the most from you and the least from medicine. Get half an hour or more of vigorous, pleasurable exercise every day.
•• Get support from Alcoholics Anonymous, Food Addicts Anonymous, a Diabetes Prevention class at the Y, or a Freedom from Smoking clinic. If your blood pressure, cholesterol, or blood sugar remain high, take medication.
•• Find a doctor or a health system that emphasizes prevention, remains accessible if you stop driving, and will be with you for the long haul.
•• Get to know neighbors, cultivate friendships with younger people, help friends who are sick, and find ways to mentor and to give.
•• Pick a medical advocate (formally known as a medical power of attorney, proxy, health care agent, or surrogate) and talk openly about your fears and wishes.
•• Sign an advance directive, free online from The Conversation Project and mydirectives.com, or fill out the “Five Wishes,” version, $5 from AgingwithDignity.org, P.O. Box 1661, Tallahassee, FL 32302.
•• Prepare not only for death, but for a period of prolonged disability. Fill out forms to allow a trusted friend or spouse to be your “authorized representative” with Medicare, access your medical records, and act as your “durable power of attorney for finances.”
•• Get your family on the same page. Talk about what a “good death” means to you.
•• Create a simple daily spiritual practice, including half an hour of quiet time and a gratitude list, to feed your soul.
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 (February 2019)
  • Length: 288 pages
  • ISBN13: 9781501135316

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Raves and Reviews

“Butler’s factual, no-nonsense tone is surprisingly comforting, as are her stories of how ordinary folks confronted difficult medical decisions… Her thoughtful book belongs on the same shelf as Atul Gawande’s best-selling Being Mortal and Barbara Ehrenreich’s Natural Causes.”
The Washington Post

“A better roadmap to the end… combines medical, practical, and spiritual guidance.”
Kate Tuttle, The Boston Globe

"A commonsense path to define what a 'good' death looks like."
USA Today

“An empowering guide that clearly outlines the steps necessary to avoid a chaotic end in an emergency room and to prepare for a beautiful death without fear.”
Shelf Awareness

“Straightforward, well-organized, nondepressing… Free of platitudes, Butler’s voice makes the most intimidating of processes—that of dying—come across as approachable. Her reasonable, down-to-earth tone makes for an effective preparatory guide.” 
Publishers Weekly

“I unwrap new books about end-of-life issues with a certain world-weariness. That changed when I received a copy of Katy Butler’s The Art of Dying Well… For all of us boomers who have wondered how we might apply what we learned from the passing of our parents, and make the process smoother -- and yes, profound -- for our children, here are some really good answers.”
Barbara Peters Smith, Sarasota Herald-Tribune

“This book is filled with deep knowledge and many interesting experiences. It is a guide for staying as healthy and happy as possible while aging, and also shows how important it is to be medically informed and know our rights in the communities where we live, in order to stay in charge of our lives and therefore less afraid of the future. Katy Butler has written a very honest book. I just wish I had read it ten years ago. You can do it now!”
Margareta Magnusson, author of The Gentle Art of Swedish Death Cleaning

The Art of Dying Well is a guide to just that: how to face the inevitable in an artful way. Katy Butler has clear eyes and speaks plainly about complicated decisions. This book is chock-full of good ideas.”
Sallie Tisdale, author of Advice for Future Corpses

“In plain English and with plenty of true stories to illustrate her advice, Katy Butler provides a brilliant map for living well through old age and getting from the health system what you want and need, while avoiding what you don't. Armed with this superb book, you can take back control of how you live before you die.”
Diane E. Meier, MD, Director, Center to Advance Palliative Care

“Katy Butler has given us a much needed GPS for navigating aging and death. The Art of Dying Well is a warm, wise and straightforward guide, hugely helpful to anyone—everyone—who will go through the complex journey to the end of life.”
Ellen Goodman, Founder, The Conversation Project  

“No, you won’t survive your death, but you can live until the very last moment without the pain and humiliation that inevitably accompany an over-medicalized dying process. Katy Butler shows how, and I am profoundly grateful to her for doing so.” 
Barbara Ehrenreich, author of Natural Causes

“This is a book to devour, discuss, dog-ear, and then revisit as the years pass. Covering matters medical, practical, financial and spiritual – and, beautifully, their intersection – Katy Butler gives wise counsel for the final decades of our ‘wild and precious’ lives. A crucial addition to the bookshelves of those seeking agency, comfort and meaning, The Art of Dying Well is not only about dying. It’s about living intentionally and in community.”
Lucy Kalanithi, MD, FACP, Clinical Assistant Professor of Medicine, Stanford School of Medicine

“The Art of Dying Well is the best guidebook I know of for navigating the later stages of life. Katy Butler’s counsel is simple and practical, but the impact of this book is profound. A remarkable feat.”
Ira Byock, MD, author of Dying Well and The Best Care Possible, Active Emeritus Professor of Medicine, the Geisel School of Medicine at Dartmouth

Praise for Katy Butler and Knocking on Heaven's Door

“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

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 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

"[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

"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

"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

"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

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