In the fall of 2006, I found myself in a labyrinth without a map.
For five years, I’d been shuttling between my home in California and my parents’ house in Connecticut as a member of the “rollaboard generation”–the 24 million middle-aged sons and daughters who help care for aging and ailing parents and often, but never often enough, roll their suitcases on and off planes.
Things had been hard for my parents, who were then in their eighties and entering the last chapter of their long and vigorous lives. But I had no idea how hard they were about to get.
My father Jeffrey—a retired Wesleyan University professor who’d tossed me laughing into the air when I was a baby and taught me to read when I was four—had suffered a devastating stroke at the age of 79. A year later, to correct a slow heartbeat, he’d been casually outfitted with a pacemaker that kept his heart going until his life became a curse to him rather than a blessing. He'd told my mother, "I'm living too long."
By the time the hellish summer of 2006 arrived, he was 84 and I’d come to believe that his pacemaker should never have been installed at all. The man I loved more than any other was going blind and falling into dementia. He did not understand the purpose of a dinner napkin and when I visited, I had to coach him to take off his slippers before he tried to put on his shoes. In June, he spent an entire weekend brushing and re-brushing his teeth. In August, he suffered a brain hemorrhage, fell in the driveway, and spent nearly a week in Yale-New Haven hospital, where he suffered a terrible form of cognitive decompensation, often afflicting the elderly, known as “hospital delirium.” When he came home, he asked my brother Michael why the living room filling up with leaves.
As fall deepened into winter, I came to fear that mother would be broken by nonstop caregiving. “I feel my life is in ruins,” she wrote in her journal about the man she’d loved for nearly 60 years and thought of as her best friend. “This is horrible and I have lasted for five years. Sometimes I wish he would die and set me free.” I knew very little about the workings of pacemakers then, or about the laws and ethical traditions that govern the unprecedented moral dilemmas created by advanced medical technologies. I did not know if turning one off was considered a form of homicide, or criminal neglect, or simply mercy. I had more questions than answers. I felt guilty about my own thoughts, and afraid. But in my gut I suspected that the little device, so thoughtlessly installed, was keeping my father from a devoutly-wished for natural death.
That is how things stood in January 2007, when in the course of my work as a science reporter, I interviewed a woman named Katrina Bramstedt who worked for the Cleveland Clinic. I did not immediately understand how her work applied to my family’s dilemmas, but soon enough I would. I was looking for science stories to write, and she was a hospital bioethicist, a member of a relatively new profession propelled into being by the life-prolonging machines in the ICU. Employed by the hospital, Bramstedt functioned somewhat like an informal judge, setting out and applying the rules when families, patients, and medical staff were at odds. She was the arbiter when a family like mine found itself unexpectedly powerless in the face of advanced medicine.
Most of her consults involved much more extreme power struggles than ours between doctors and families over how to treat—or stop treating—desperately ill patients in intensive care, ravaged by deadly infections and kept alive with drugs, feeding tubes, respirators, and dialysis. She had her work cut out for her. 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—especially, but not only, African-American families—wanted to keep going when doctors wanted to quit. Sometimes doctors ignored advance directives from patients and even ripped them out of the charts. Sometimes a family would balk at implanting a feeding tube in a demented relative, only to hear a doctor say something like, “Nobody starves to death on my watch.” Sometimes doctors complied when a long-estranged son or daughter—commonly referred to in hospitals as “The Nephew from Peoria”—flew in at the last minute and insisted that everything be done, even things that doctors and other family members thought were torturous, wasteful, and hopeless. When fragmented families collided with a fragmented medical system, the results could be disastrous.
An undercurrent of realistic worry ran through medical staff, administrators, and the in-house department, usually headed by an attorney, known as Risk Management. In a handful of extreme cases scattered across the country, distraught husbands and fathers had entered ICUs with guns and disconnected half-dead children from respirators or shot comatose wives in the head. On the other hand, if too much morphine was given, or too little done to try to save a life, a nephew from Peoria might sue for negligence, or a local district attorney might even consider charges of manslaughter. A single unnecessarily prolonged intensive care death could cost a hospital well over $300,000—money not recovered from Medicare, which usually paid a lump sum based on the patient’s diagnosis, no matter what the hospital’s costs. The families, meanwhile, were often in shock: staggering to absorb reams of data from rotating casts of stranger-specialists who each zeroed in on a single organ and did not seem to talk to one another; fearful of death; ignorant of the limits of medicine; guilt stricken and religiously conflicted about ending life support; agonized by relatives’ suffering; and hoping against hope.
In bland, untidy conference rooms edging the ICU, specialists asked families they’d never previously met to assent to the removal of life support, and spouses and children pondered questions—spiritual, legal, and medical—they rarely considered before tragedy hit. Did they have the right to say no to a doctor? To force a doctor to continue treatment? Was it God’s will to do everything possible to prolong a life, no matter how much someone beloved was suffering? Was it suicide to refuse medical care? Was it murder not to give it? Was it a sin? And how were they to decide when the people they loved could no longer speak for themselves?
Out of this ongoing moral and logistical chaos, in which patients’ families often felt disempowered, bioethicists like Bramstedt had created a semblance of order based on the philosophical and legal traditions of the West. She had read St. Augustine’s teachings forbidding suicide and euthanasia and St. Thomas Aquinas’s hairsplitting formulation of the principle of double effect, which allows a doctor to give a dying person morphine to relieve pain as long as the known side effect—hastened death—is not the motivating factor. She knew that Pope Pius XII declared in 1957 that good Catholics did not have to prolong their lives using extraordinary means, such as respirators. She had read the 1976 decision by the New Jersey Supreme Court, which quoted Aquinas and Pius XII when it permitted the devout Catholic parents of Karen Ann Quinlan to order the removal of the respirator from their daughter, who’d been in a persistent vegetative state since collapsing into unconsciousness at a party a year earlier, after consuming alcohol and Valium. Bramstedt had studied the pioneering 1976 California statute that first validated the living will, inspired by the Quinlan case and passed the same year over the opposition of the Catholic Church, the American Medical Association, and the California ProLife Council.
She knew that a watershed 1990 U.S. Supreme Court decision, Cruzan v. State of Missouri, had further expanded—within limits—a patient’s constitutional right to refuse medical treatment. Nancy Cruzan, a young Missouri woman who worked in a cheese factory, had been resuscitated by paramedics who found her facedown in a ditch, not breathing, after a one-vehicle car crash on the way home from a bar. By the time the U.S. Supreme Court heard her case, Cruzan had spent seven years in a state nursing home in what one Supreme Court justice called “a twilight zone of suspended animation” and a Missouri appeals court justice called “a living hell.” Her parents (like the Quinlans, devout Catholics) sought to remove the feeding tube that kept her from dying, over the objections of the state of Missouri, which was then embroiled in a fierce political war over abortion. The Supreme Court affirmed that patients had the right to refuse any medical treatment, and that a feeding tube was, indeed, a medical treatment. But it also declared that the State of Missouri had an absolute and legitimate interest in the “preservation of life,” and that Cruzan’s parents had to prove to the state’s satisfaction that removing the tube was an expression of their daughter’s wishes and not their own.
It was Bramstedt’s job, in a secular, religiously diverse culture with no consensus on these issues, or even a common language, to thread the needle among conflicting sets of values: the patient’s legal right to medical autonomy; the state’s interest in preserving life; the religious values of the family; the hospital’s interest in avoiding a lawsuit; and the doctor’s Hippocratic obligations to act out of “beneficence”—usually defined as doing more, not less—and not to assist in suicide or mercy killing. It was she who reassured families and doctors that it was morally and legally okay to deploy treatments that gave comfort while withholding treatments that prolonged the agony of death.
Despite more than 20 years of complaints by disempowered families over the brutal, unsanctified nature of death in the ICU, conflicts there remained the bread and butter of Bramstedt’s ethics consults. But she had recently recognized a subtler new problem, one directly bearing on our family’s dilemma—whether or not to disconnect my father’s pacemaker, which was keeping him alive as his dementia worsened.
Before becoming a bioethicist, Bramstedt had been a quality engineer for Guidant, then the third-largest U.S. maker of pacemakers and implantable cardiac defibrillators. (Defibrillators are advanced cardiac devices, more sophisticated than a pacemaker; they reboot the heart with a powerful shock when it races uncontrollably or falls into quivering arrhythmias.) The pacemaker and the defibrillator, Bramstedt told me, were creating ethical problems at the end of life, years after they were first put in. 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.”
Defibrillators, she went on, sometimes shocked patients unnecessarily, and when they did, patients felt as if they’d been kicked in the chest by a horse. If not deactivated, they could repeatedly shock people during their death agonies. Pacemakers, Bramstedt said, were more morally ambiguous. They might prolong life, but they didn't cause pain the way defibrillators or respirators did, and they often improved what she called “quality of life.”
I took another breath. My father was not in a state of suspended animation like Nancy Cruzan. He could still eat his own breakfast. But he’d once spent a whole weekend brushing his teeth. He dirtied his pants and felt ashamed. He could no longer take a walk on his own. Wasn't his life a sort of living hell? And what about my mother, whose life was dedicated to caring for him?
There was, Bramstedt continued, little open discussion among cardiologists, and no consensus, about the legality and morality of turning off cardiac devices. But they were often deactivated just the same. In 2008, Bramstedt, working with a cardiologist, an internist, and a statistician from the Mayo Clinic, conducted an anonymous Web-based survey of 787 nurses, doctors, and device-company representatives who were members of the Heart Rhythm Society, a cardiology professional association. Eighty-seven percent reported they had been involved in requests to deactivate a cardiac device in a terminally ill patient. Of those, 92 percent had personally deactivated a defibrillator and 76 percent, a pacemaker. Many said they were less comfortable with deactivating pacemakers, which weren't seen as medically burdensome, than with deactivating defibrillators, which dramatically worsened quality of death. A fifth had refused a request to deactivate a pacemaker, and 11 percent considered pacemaker deactivation a form of euthanasia.
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 turned off. That could be done painlessly, she said in an aside, without surgery.
That was news to me.
* * *
I made more calls and discovered that a white ceramic device, functioning like a TV remote and shaped like the wands that children use to blow bubbles, could be placed around the hump beneath my father’s collarbone. Someone could press a few buttons and the electrical pulses that ran down the pacemaker’s spiraled wires to his heart would slow until they were no longer effective. My father’s heart would probably not stop. It would just return to its old, slow rhythm. If his aging heart had deteriorated since the pacemaker was put in, he might die within weeks. If he were unlucky, he might linger for months.
If we did nothing, his pacemaker would not stop for years.
Like the tireless charmed brooms that bedeviled the sorcerer’s apprentice in Disney’s Fantasia, the pacemaker would prompt my father’s heart to beat after he became too demented to speak, sit up, or eat. It would briefly keep his heart twitching after he drew his last breath. If he were buried, it would keep sending electrical signals to his inert, dead heart in the coffin. If he were cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.
I thought about the Cruzan case. If a feeding tube was medical treatment, wasn't a pacemaker? Surely my mother and I, as my father’s “designated health care surrogates,” had the legal and moral right to request its deactivation. It sounded eminently reasonable. But it didn't feel that way.
When my father had his first 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 the want of a nail, the horseshoe was lost; for the want of the horse, the rider was lost; for the want of the rider, the battle was lost; for the want of the 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 I’d flown home. If only I’d known what to ask when I got there. If only my mother 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—who only a year later said he was “living too long”—whether he wanted to live to be 90. Yet whom could I blame?
I made more calls. 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 my father’s hernia surgery had been performed another way, using a local anesthetic less risky to the heart. I learned we could have signed a waiver accepting the risks. I learned that the surgeon could have hooked my father’s heart up to a temporary external pacemaker—a procedure that a leading cardiac surgeon told me was perfectly safe—and removed it after the hernias were sewn up and my father safely out of the recovery room.
I would raise these options years later with my father’s cardiologist and surgeon. They were nonplussed. Said the surgeon, “Your father was still pretty together back then. It’s hard to envision a scenario where you’d say, ‘I've got to get that hernia fixed but don’t worry about his heart!’” Said the cardiologist, “When one has a pretty solid indication for a permanent pacemaker, you don’t usually do that [use a temporary device]. That’s a risky situation versus a fairly minor procedure and a permanent solution.” In any case, Dr. Rogan said, “Everyone takes for granted that it’s the family care physician who really acts as a quarterback.” And where was my parents internist, Dr. Fales? Why did Medicare reward the surgeon and the cardiologist far better for doing the procedure than it would have Dr. Fales for making a reasoned argument against it? “I spend 45 minutes thinking through the problem, and I get 75 to 100 bucks,” Dr. Fales said when next we spoke. “Someone spends 45 minutes putting in a pacemaker and is paid six times as much.”
Why had “informed consent” for what Bramstedt defined as a miniaturized form of life support consisted of nothing more than a brief meeting with a surgeon, at which my father had obediently affixed his wavering, spider-like signature to a ritual form whose checked boxes described only the generic risks of minor surgery? And what were we to do now?
I called my mother and told her that my father’s pacemaker could be painlessly deactivated. She listened in silence. Years later I discovered that not long after our talk, she e-mailed a close friend in England and told her that I seemed to want to just get rid of my father.
That was where things stood when I found myself kneeling a month later on a meditation bench 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 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, in other words, 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.
This post is adapted from Katy Butler's Knocking on Heaven's Door: The Path to a Better Way of Death.