On an autumn day in 2007, while I was visiting from northern California, my mother made a request I dreaded and longed to fulfill. She’d just poured me a cup of tea from her Japanese teapot; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. “Please help me get your father’s pacemaker turned off,” she said. I met her eyes, and my heart knocked. 

Directly above us, in what was once my parents’ shared bedroom, my 85-year-old father, Jeffrey—a retired Wesleyan University professor, stroke-shattered, going blind, and suffering from dementia—lay sleeping. Sewn into a hump of skin and muscle below his right collarbone was the pacemaker that had helped his heart outlive his brain. As small and shiny as a pocket watch, it had kept his heart beating rhythmically for five years. It blocked one path to a natural death. 

After tea, I knew, my mother would help my father up from his narrow bed with its mattress encased in waterproof plastic. After taking him to the toilet, she’d change his diaper and lead him tottering to the living room, where he’d pretend to read a book of short stories by Joyce Carol Oates until the book fell into his lap and he stared out the sliding glass window. 

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. That my mother had been meditating for 20 years and could stain a deck, sew a silk blouse from a photo in Vogue, and make coq au vin with her own chicken stock. That she practiced Japanese calligraphy and that her paintings of South African fish had been published in an ichthyologists’ handbook. That she thought of my father as her best friend. And that my father never gave up easily on anything. 

Born in South Africa’s Great Karoo desert, he was a 21-year-old soldier in the South African Army when he lost his left arm to a German shell in the Italian hills outside Siena. He went on to marry my mother, earn a PhD from Oxford, coach rugby, build floor-to-ceiling bookcases for our living room, and, with my two younger brothers as crew, sail his beloved Rhodes 19 on Long Island Sound. When I was a teenager and often at odds with him, he would sometimes wake me chortling lines from the Rubaiyat of Omar Khayyam in a high falsetto: “Awake, my little one! Before life’s liquor in its cup be dry!” On weekend afternoons, he would put a record on the stereo and strut around the living room conducting invisible orchestras. 

Four decades later, in the house where he once chortled and strutted and sometimes thundered, I had to coach him to take off his slippers before he tried to put on his shoes. 

My mother put down her teacup. She was 83, as lucid and bright as a sword point. She put her hand, hard, on my arm. “He is killing me,” she said. “He. Is. Ruining. My. Life.” Then she crossed her ankles and put her head between her knees, a remedy for near-fainting that she’d clipped from a newspaper column and pinned to the bulletin board behind her. She was taking care of my father for about a hundred hours a week. 

Related: A Good Death

I looked at her and thought of Anton Chekhov, the writer and physician who died of tuberculosis in 1904 when he was only 44. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “There come painful moments when all those close to him, timidly, secretly, at the bottom of their hearts wish for his death.” A century later, my mother and I had come to long for the machine in my father’s heart to fail. 

How we got there is a long story, but here are a few of the bones. On November 13, 2001, when he was 79 and apparently vigorous, my father suffered a devastating stroke. He could no longer fasten his own belt or finish a sentence. My 77-year-old mother became his full-time caregiver and never again would spend a leisurely afternoon brush-painting ensos. My heart unexpectedly opened, and I found myself joining the “rollaboard generation,” the 24 million adults currently helping to care for their aging parents, often criss-crossing the country when a crisis hits. 

A year later my father was outfitted with a pacemaker in a moment of hurry and hope. The device kept his heart going as he slid into near-muteness, misery, and helplessness. In January 2007, when he no longer understood the purpose of a dinner napkin, I learned that his pacemaker could be turned off painlessly and without surgery, thus opening a door to a relatively peaceful death. It was a death I both feared and desired, as I sat at the kitchen table drinking my mother’s tea. 

I loved my father—even as he was, miserable, damaged, and nearly incommunicado. I loved my mother and wanted her to have at least a chance at a happy widowhood. This was a moral dilemma for which neither the Christianity of my childhood nor my adopted Buddhism had prepared me. I felt like my father’s executioner, and that I had no choice. 

I met my mother’s eyes and said yes. 

Our family’s journey through the labyrinth of modern medicine’s frighteningly successful war on death began in December 2002, a year after my father’s stroke. In a warm therapeutic pool, an enthusiastic physical therapist sent him through his exercises so hard that two gaps opened up in the smooth muscle of his lower abdomen. Through those gaps nosed bits of fat and tissue, making painful humps beneath the skin. The humps—technically known as inguinal hernias—were easily fixable with the latest laparoscopic surgery, scheduled to be performed under general anesthesia. Time was of the essence: without a surgical fix or at least a truss, a loop of small intestine might get pinched in the wall of my father’s abdomen, lose its blood supply, and develop gangrene. Dr. Fales, my parents’ trusted internist, recommended a truss to temporarily ease the pain, but my mother balked because its $200 cost was not covered by Medicare. In my ignorance, I figured that a hernia repair was too minor to warrant my making a trip across country. Only later would I understand that there is no such thing as minor surgery for the very old and frail. 

On the day after Christmas, my mother drove my father to a cardiologist named John Rogan for an urgent preoperative cardiac clearance. Dr. Rogan ran an electrocardiogram and discovered that at rest, my father’s aged heart beat only 35 times a minute—a little more than half the rate of most healthy young people. His heart’s natural pacemaker, the sinoatrial node, had, in the process of normal aging, lost much of its firing power. 

My father had had the benign condition—technically known as asymptomatic bradycardia—for at least six years. It had revealed itself on a routine electrocardiogram. But despite displaying the wrong sort of squiggle on electrocardiograms, my dad had never shown signs of heart trouble, aside from an occasional puffy ankle. If he’d grown old before the pacemaker was invented, nobody would have called his heart diseased—just worn out. 

Dr. Rogan said that without a pacemaker, hernia surgery would be too risky. A sense of urgency, combined with the assumption that the treatment offered has no alternatives and no downsides, are common ingredients in medical decisions, later regretted, involving the fragile elderly. 

And so my parents arrived at an unmarked crossroads where even the most seemingly routine medical decisions become fraught and sacred. The choice they faced was not simply when or how to treat, but whether. They were contemplating more than a pacemaker. They were contemplating how much suffering they would bear in exchange for more time together on earth. And they did not know it. 

At this crossroads, each miraculous life-extending technology pulls up from the depths a tangle of our most deeply held and unarticulated moral questions and puts them under a halogen light. How grateful are we for the gift of life, and what are we willing to undergo for more of it? Should a caregiver’s suffering be taken into account? How do we prepare for the earthly losses death brings even to those who believe in heaven or reincarnation? When does death stop being a curse and become a blessing? Would we rather die too soon or too late? 

Photography by Eugene Richards

Dr. Rogan was a specialist in heart rhythm, not in philosophy, geriatrics, or family medicine. He cared about my father, and his advice conformed to accepted medical practice. If my father had died without a pacemaker, our family could even have sued him for failing to meet the “standard of care” of the local medical community. Dr. Rogan focused tightly on the one fixable piece of my father’s problems. He said the pacemaker was a necessity. In a brief appointment, with little discussion, he acted to indefinitely extend my father’s damaged life. 

This was a moral dilemma for which neither the Christianity of my childhood nor my adopted Buddhism had prepared me. 

Even though my parents’ trusted internist had advised against the pacemaker, my mother shrugged and said yes. (Later, after she came to regret her choice, she told me she hadn’t yet given up hope in my father’s full recovery.) The system rewarded nobody for saying “no” or even “wait”—not even my frugal, intelligent,Consumer Reports-reading mother. Medicare and supplemental insurance would cover the estimated $12,000 for my father’s pacemaker, but would not pay $200 for a truss—or better yet, a long, honest, forward-looking conversation with the internist—that could have bought time for a more informed decision. My mother asked more questions and was given more government-mandated consumer information when she bought a new Camry a year later. 

On the afternoon of January 2, 2003, my father was wheeled into a hospital operating room. With threads of fine strong silk, a popular local surgeon sewed the pacemaker into a pocket of skin below my father’s collarbone and floated two wires down a vein into his heart. Hidden from sight were its electronic innards: a tiny lithium battery, the electric pulse generator, and a miniscule computer capable of sensing any variation in my father’s heart rhythm. The first wire resting in my father’s atrium sensed his every atrial heartbeat. The second wire delivered a tiny jolt of electric current to his ventricle whenever the natural beat slowed, keeping the heart muscle squeezing and synchronized at a steady 75 beats per minute. From that day until my father’s death, the little gizmo kept up its steady beat. It kept pulsing when my father had ministrokes and could no longer make a phone call. It kept pulsing when he developed macular degeneration and could no longer read the paper. It was pulsing on the day, a year later, when he said to my mother, “I’m living too long.” 

For the next couple of years, my mother cared for my father hour after hour and day after day without a break. (Only someone who has been a hands-on family caregiver will fully understand the meaning of that sentence.) To keep herself patient, she got up at dawn and did yoga, followed by a body-scan meditation based on a CD by Jon Kabat-Zinn. In the summer of 2006, things went south. My father spent the entirety of one horrific weekend going to the bathroom hour after hour to brush and rebrush his teeth. “Oh God, now it’s like he is totally insane,” my mother wrote in the journal a social worker suggested she keep. “I feel my life is in ruins. This is horrible and it has lasted for five years. Sometimes I wish he would die and set me free.” 

Photography by Eugene Richards

Six months later, in January 2007, I interviewed a woman named Katrina Bramstedt who worked for the Cleveland Clinic. She was a hospital bioethicist, a professional role invented in the mid-20th century in response to a stunning technological revolution in medical lifesaving. Respirators, dialysis, CPR, and other complex technologies had transformed death from a domestic and spiritual ordeal into a hospital-managed high-tech flail. Gone was the once-bright line between saving a life and prolonging a dying. (A fifth of us currently die in intensive care units, even though three-quarters of us say we want to die at home.) 

In the ICU, there was no such thing as natural death, and few were comfortable with the timed event that had taken its place. Half the time, doctors wanted to keep going when families wanted to let go, and half the time, families wanted to keep going when doctors wanted to quit. When fearful families, unprepared to face death, collided with a fragmented medical system, the results could be disastrous. In bland, untidy conference rooms and even hallways and broom closets bereft of any sign of the sacred, unfamiliar specialists asked spouses and children to agree to the removal of life support. 

Related: Death Awareness

Bramstedt had her work cut out for her. In the 1970s, one of her bioethics predecessors had warned against the urge to “suture and slash our way to eternal life.” He’d been largely ignored. Old Age, Sickness, and Death—the shocking inevitables that propelled Prince Siddhartha into spiritual practice—were now believed by some doctors and patients to be problems that medicine could or should fix. The watchword in the hospital was often “If we can, we must.” 

Out of this moral and emotional chaos, Bramstedt created a semblance of order based on the philosophical and legal traditions of the West. She functioned like an informal judge, applying a set of rules when people were at odds. She knew that since 1989, the U.S. Supreme Court had affirmed the rights of adult patients to refuse, or to request the withdrawal, of any medical treatment, even if death would result. She also knew that legally appointed “medical proxies” (like my mother and me) had the right, within limits, to make medical decisions on behalf of patients like my father who could no longer make their own. But hospitals were often worlds unto themselves, and things often played out in complicated ways. It was Bramstedt’s job, in a secular, religiously diverse culture, to thread the needle among conflicting values: the patient’s legal right to medical autonomy; the state’s legally sanctioned interest in preserving life; the religious values of the family; the hospital’s interest in avoiding a lawsuit; and the doctor’s Hippocratic obligation to act out of beneficence—usually defined as doing more, not less—and not to assist in suicide or mercy killing. 

Bioethicists had been addressing these moral questions for half a century. But now Bramstedt told me about a newer, subtler issue that many of her colleagues overlooked. The pacemaker and its more advanced cousin the defibrillator, Bramstedt said, were creating ethical problems years after they were implanted. I took a breath. 

“These devices are seen as simple and low-tech,” she said. “You don’t need to crack the chest. You toss them in and you go. But because cardiologists are so much into lifesaving, they don’t think about the flip side of the coin. These devices are life-support technologies, which means the time will come when they need to be turned off.” 

The problem, Bramstedt went on, was set in motion when the devices first went in. Patients should be informed then, she said, how long their devices would last, and that the time might come when they wished to have them painlessly turned off. 

When my father had his stroke, I knew at once my parents’ world had been struck by lightning. Now I understood that the pacemaker had equally cleaved their world. For want of a nail, the shoe was lost; for want of a horse, the rider was lost; for want of a rider, the message was lost; for want of a message, the battle was lost; for want of a battle, the kingdom was lost. And all for the want of a horseshoe nail. If only my mother had asked for my opinion. If only she hadn’t hidden her angst so skillfully and groomed my father so perfectly that he looked more functional than he was to Dr. Rogan, and she less desperate. If only someone had asked my father whether he wanted to live to be 90. Yet whom could I blame? 

I spoke to more people. I learned that in an ideal world, doctors told their patients about the pros, cons, and alternatives to any proposed medical treatment. I learned that the pacemaker could have been avoided altogether if the hernia surgery had been performed using a local anesthetic less risky to the heart. I learned that the surgeon could have safely hooked my father’s heart up to a temporary external pacemaker and removed it after the hernias were sewn up and my father out of the recovery room. 

Most significantly, I understood that our family now faced a terrible choice. My father’s pacemaker could be deactivated without surgery. He might die quickly. He might die slowly. One way or another, if we removed the technological barriers, he would die. Never before in history have so many sons and daughters been faced with some version of this choice. Sudden death or slow dementia? The Lady or the Tiger? It was a problem that our ancient religions, founded when death was frequent, premature, and random, rarely faced. And so we try to pour new meanings into old verbal boxes—crude, flawed, stubborn words that don’t capture what we face. I tried out our threadbare common language under my breath: Filial Devotion. Patricide. Mercy Killing. Euthanasia. Physician-assisted Suicide. Death Panel. None of them were right. 

As I groped for a language I could call my own, I thought of Indra’s Net, an ancient Buddhist metaphor for the interrelatedness of all life. The Net of Indra is a vast, bejeweled matrix spanning and encompassing the whole universe. From every knot hangs a jewel, and each jewel reflects all the other jewels within the net. My father’s life was one jewel hanging from a knot in that infinite web, and in that jewel was reflected my life, and my brothers’ lives, and my mother’s life. Reflected there, too, were the lives of my parents’ internist and Dr. Rogan, all of us infinitely reflecting and affecting each other in a universe without beginning or end, where divine energy flowed from form to form, permeated with light. 

My father’s pacemaker and our broken human lives ticked on, not in a universe governed by a god whose rules were written on tablets and interpreted by male priests who’d never spent a day changing adult diapers. They ticked on in a world that could not be reduced to bioethical legalisms, sophistry, evasion, and double-talk. In the world we lived in, every act and failure to act trailed in their wake widening ripples of suffering. But nowhere I looked did I find Avalokiteshvara, the bodhisattva with a hundred eyes and hands who hears the cries of the world and reaches out to help using whatever tool might do the trick. Rarely did I even find the word “suffering” written, much less a map for what to do when the ones you love are drowning in it. 

Photography by Eugene Richards

That was where things stood when I found myself kneeling, a month later, with my bottom on a meditation bench and my hands on my thighs, in a spacious hall among the dripping scrub oaks of northern California. A bell rang. I bowed to the Buddhas and headed for the door. The rain was beating its way down the square copper drainpipes as I moved slowly under my umbrella, in the silent company of others, down to the dining room. I’d arrived at Spirit Rock Meditation Center consumed by worry and obsession, furious about the pacemaker and sick of nagging my mother to get help. The inner microphone had been taken over by voices I barely noticed in my daily life: You’re not productive. You don’t make enough money. Your house is a mess. Your man isn’t good enough. You’re letting your parents down. That evening, the rain stopped. The only sound I could hear in the meditation hall was the ribbit of a frog somewhere outside in the creek. My face softened like melting wax. My lips let go of their habitual tight line. Instead of coping with the debris on the surface of my mind, I was reveling in the peace below: the gentle rhythm of my breathing, the beating of my heart. It was as though I’d dropped down a dark well. A man behind me loudly cleared his throat. I stayed calm. In my right shoulder, nerves fired and faded in response, like a bright lace of phosphorescence stirred up by an oar in night water. 

Earlier that day, our meditation teacher had suggested we avoid what she called the “second arrow.” In a classic sutra, the Buddha had said that if someone shoots you in the foot, don’t pick up the bow and shoot yourself in the foot again. Don’t make your suffering worse by arguing with what’s so. That’s a second arrow. Accept pain. Don’t criticize yourself, or others, for feeling pain: that is a second arrow. Don’t regret what cannot be changed, or try to predict what cannot be known. By throwing their complex machinery into the path of death, my father’s doctors had shot my parents with a second arrow. And by trying too hard to shield my parents from suffering, I might be shooting myself—and them—with a second arrow as well. 

By the spring of 2008, my father could remember the names of only two of his three children, and my mother was in open rebellion against all of his doctors except Dr. Fales, the internist. She and I had twice asked Dr. Rogan to turn off the pacemaker, and even though my father had legally appointed us to make his medical decisions, we had been refused. (Dr. Rogan later told me that disabling the device would have been like “putting a pillow” over my father’s head. A month after my father’s death, a consortium of leading cardiology associations reaffirmed patients’ legal right to have their devices disabled, and that doing so was neither assisted suicide nor euthanasia. That came, of course, too late for us.) Stymied, my mother had taken matters into her own hands, and on my father’s behalf refused most additional neurological and cardiological testing. She took my father off blood thinners and refused other medications. When his chest grew wheezy from bronchitis, she did not call a doctor or make sure he got antibiotics. 

My father’s bronchitis got worse. In the daytime, he slept. At night he thrashed around in their old bedroom, sometimes getting up and falling, as my mother, drained of sleep, listened via the baby monitor from the guest bedroom and came in to get him back into bed. His breathing grew worse, his mind more agitated. A palliative care nurse came one morning and put her ear on his gurgling chest. He had pneumonia, she said. He was finally dying decisively enough to qualify for hospice. Thanks to our involvement with her program, he would not meet his death in intensive care after a panicked stop in an emergency room. He was taken to the local hospital’s inpatient hospice unit, fighting as if for his life, kicking and biting and telling the orderlies to “bugger off.” Toni Perez-Palma, his stalwart hired caregiver, visited. She asked him if he knew who she was, and he opened one eye and fixed her with a baleful and knowing look. He ate a full dinner, and then was shot full of morphine. By the time I got to the unit—it had the upholstered, friendly feel of a nice Radisson hotel—he was lying silently in bed, his lungs slowly filling with fluid, unreachable, his eyes shut, breathing as hard and regularly as a machine. 

Once upon a time we knew how to die. In mid-15th-century Europe, a bestseller was Ars moriendi, or The Art of Dying. We knew how to sit at a deathbed, and how to die, because we saw people we loved die all through infancy, childhood, youth, middle age, and old age: deaths we could not make painless, deaths no machine could postpone. The deaths of our ancestors were not pretty. Some died roaring in pain. But through the centuries we tutored ourselves by handing down stories of how the spiritually adept met their deaths.

In a study of Zen funeral rituals in Japan, William Bodiford, an anthropologist, stated: “One of the purposes of religion is to guide the living through the experience of death.” My mother and I craved the sacred, but we did not know how to bring it to my father’s deathbed. We’d attended Buddhist retreats and read Pema Chödrön and meditated alone, but neither one of us had embedded ourselves in a local Buddhist sangha, or community. And only through the flesh and blood of other imperfect human beings could religion have guided us. I asked a hospice nurse for a Buddhist chaplain, but in Middletown, where most of the residents are African American Protestants or Polish American, Latin American, and Sicilian American Catholics, she knew of none. 

Later, a gentle woman in a blue dress introduced herself: she was Elizabeth Miel, a volunteer Episcopalian chaplain. We sat together, one on each side of my father’s bed. I told her that my father’s mother had been Anglican, and that when I was a little girl in Oxford, my parents had gone to communion regularly and I to the Sunday school at St. Michael and All Angels. The chaplain offered to give my father Last Rites. I looked over my shoulder, worried that my mother might walk in. I saidyes. The chaplain opened a little stainless steel canister containing cotton batting soaked with olive oil, and made the sign of the cross on my father’s forehead with her thumb. Opening her Book of Common Prayer, she began the Ministry at the Time of Death. “Look on this your servant Jeffrey lying in great weakness, and comfort him with promise of life everlasting,” she read. 

My shoulders let down. I didn’t think my father would mind. It might comfort him. It was comforting me. “Set him free from every bond, that he may rest with all your saints in the eternal habitations, where with the Father and the Holy Spirit you live and reign.” I liked the notion that the soul of my poor laboring father was going somewhere, even into the glorious company of the saints in whom I did not believe. “May his soul rest in peace,” the chaplain said. 

She handed me a little blue brochure, and together she and I read aloud the Twenty-third Psalm, which would comfort me on many nights to come when I could not sleep. “Yea, though I walk through the valley of the shadow of death, I will fear no evil,” we said together. I let a breath fill the hole in my aching heart, and the warmth spread outward. “Thou anointest my head with oil. Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord forever.” After a little while, Elizabeth got up and closed the door behind her. 

Soon after, my brother Jonathan arrived from California, touched my father’s shoulder, and said, “It’s all good.” 

Three times in the course of his long life, my father had taken a step toward the ferryboat across the dark river, only to be blocked by luck, or fate, or medicine. First came his brush with accidental death as a teenager in the 1930s, on a warm night when he failed to catch up with the red taillights of the stolen car that bore two of his closest friends to their deaths in a ditch in the South African desert. Then came battlefield death, from whose strong arms doctors wielding penicillin and surgical knives wrested him in 1944 in a field hospital in Italy. Then came his natural death, curling like a cat in his slowing heart and stalking away when the pacemaker went in. Then came the tiny deaths suffered as he lost, neuron by neuron, his memory, freedom, sight, hearing, balance, and personality. Now, at last, came his final, merciful, difficult, and belated death, threading its way through every man-made obstacle, flying in on leather wings through an upstairs window quietly opened by my mother, who, by refusing to give my father water, food, or antibiotics, fulfilled her marriage’s final, tender, and brutal vow. 

With my mother alone at his side the next afternoon, my father’s lungs and brain gave out, and he stopped breathing. Inside his chest, the pacemaker continued sending out its tiny electrical pulses—finally, blessedly, powerless.

Temple
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