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.