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On The Other Hand...
Resolving the ethical dilemmas presented by modern medicine is not for the faint of heart. As technology introduces ever more perplexing questions, medical ethics committees have stepped in to help caregivers, patients, and families chart the right course. Here's an inside look at DHMC's ethics committee, one of the nation's oldest.
Text by Laura Stephenson Carter • Photographs by Jon Gilbert Fox
Twenty-three years ago, I stood in a hospital room in Louisville, Ky., with my father and my two sisters and three brothers. We were gathered around my 54-year-old mother's bed. She lay there comatose, with tubes and wires snaking in and around her. Although her heart was beating regularly—as indicated by the jagged spikes marching across the EKG screen—she was able to breathe only with help from a mechanical ventilator. And there was no sign that she was aware of our presence. Still, we talked to her, joked nervously with each other, and waited for her to wake up and scold us for being noisy.
Gradually, we learned what had happened. My mother—who was notorious for avoiding doctors after years of unsuccessful treatments for debilitating rheumatoid arthritis—had collapsed at home with a paralyzing headache. Terrified, she'd asked my youngest brother, who was living with my parents at the time, to call an ambulance. At some point she lost consciousness. My father rushed home from a business trip in North Dakota, and the rest of my siblings and I flew in from all corners of the country.
A year earlier, my mother had had a bout of pneumonia that had seemed to linger. Her lungs had never fully cleared, and she had, reluctantly, started seeing doctors again. But they had been stumped, so mymother had resigned herself to the annoyance of chronic lung congestion. It was nothing compared to her years of suffering from the crippling pain of arthritis and from the side effects of treating it—such as the stomach ulcers caused by the thousands of aspirins she'd swallowed. She had had headaches in the past, too, but none as bad as the one that had landed her in the hospital.
From our huddle around my mother's bed, a neurologist ushered us into a small conference room. He explained that she had a tumor in her brain stem—the part of the brain that controls blood pressure, heartbeat, and breathing. It was the tumor that had wreaked havoc with her respiratory function, causing fluid to
collect in her lungs. The excruciating headache was what tipped off the doctors that her lung problems had a neurological origin. The tumor was inoperable, the doctor explained gently. "We don't expect her to wake up," I recall him saying.
Not wake up? Inoperable? Wasn't there something that could be done? The doctor shook his head sadly. "There's nothing we can do," he repeated.
Stunned, we filed back into her room. I don't remember how long we stayed there, but at some point we said our goodbyes—tomymother, as well as to each other before we dispersed back across the country. My mother lived for 10 days on the ventilator. Then my father called each of us to say that she had been removed from life support and was gone. Her funeral was a few days later.
As I began working on this article, and hearing stories about other deaths fraught with complex choices, I thought back to my own family's experience. My father had made the difficult decision to take my mother
off life support. I asked him recently what guidance the medical staff had offered during that trying time. Not much, he said. I can only imagine how lonely and scared he must have felt. Back then, decisions to limit medical treatment were often challenged in court. His lawyer had warned him to be careful. But my father was stoic, andmy siblings and I trusted himto do what he thought was best—to make the decision that was right for our mother.
His thinking, as well as ours, was surely influenced by the famous case of Karen Ann Quinlan. She had died earlier that same year, 1985, after living for 10 years in a persistent vegetative state—a coma. In 1975, Quinlan, then 21, had collapsed after drinking alcohol and taking drugs at a party. She stopped breathing and went into a coma from which she never emerged. Her parents, once they understood that their daughter had suffered irreparable brain damage, wanted to remove her from the ventilator that was breathing for her. But they had to fight for that right in court. In 1976, a New Jersey Supreme Court ruling allowed them to
Laura Carter is the associate editor of Dartmouth Medicine magazine. After completing the reporting and writing for this feature, she made sure that her own advance directives were on file at DHMC. All of the ethical scenarios here in italic type are based on actual cases that have come before the DHMC Ethics Committee, but the names and some identifying details have been changed in order to preserve patient confidentiality.