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.