Today’s New York Times article is about how advances in medical innovation, such as pacemakers, mean that many of us will become progress’s casualties, or, as the author writes about her parents, “At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.”
Normally, I don’t like to introduce such a somber note into my blog, but I think the article shows the similarities between access (or lack of) to full information for both psychiatric treatment and other medical treatment. If you have full disclosure, you may decide to take a different course. At some point, I,too, decided that psychiatric medications were making a difficult situation worse.
Below is a condensed selection of paragraphs from the article.
. . . My father’s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state. . .
. . . And so my father’s electronically managed heart — now requiring frequent monitoring, paid by Medicare — became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits. . .
. . . In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. “The Jeff I married . . . is no longer the same person,” my mother wrote in the journal a social worker had suggested she keep. “My life is in ruins. This is horrible, and I have lasted for five years.” His pacemaker kept on ticking. . .
. . . Not long afterward, my mother declined additional medical tests and refused to put my father on a new anti-dementia drug and a blood thinner with troublesome side effects. “I take responsibility for whatever,” she wrote in her journal that summer. “Enough of all this overkill! It’s killing me! Talk about quality of life — what about mine?” . . .
. . . On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing. . .
. . . A year later, I took my mother to meet a heart surgeon in a windowless treatment room at Brigham and Women’s Hospital in Boston. She was 84, with two leaking heart valves. Her cardiologist had recommended open-heart surgery, and I was hoping to find a less invasive approach. When the surgeon asked us why we were there, my mother said, “To ask questions.” She was no longer a trusting and deferential patient. Like me, she no longer saw doctors — perhaps with the exception of Fales — as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn’t help feeling that something precious — our old faith in a doctor’s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts — had been lost.