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.
When bioethicists debate life-extending technologies, the effects on people like my mother rarely enter the calculus. But a 2007 Ohio State University study of the DNA of family caregivers of people with Alzheimer’s disease showed that the ends of their chromosomes, called telomeres, had degraded enough to reflect a four-to-eight-year shortening of lifespan. By that reckoning, every year that the pacemaker gave my irreparably damaged father took from my then-vigorous mother an equal year.
When my mother was upset, she meditated or cleaned house. When I was upset, I Googled. In 2006, I discovered that pacemakers could be deactivated without surgery. Nurses, doctors and even device salesmen had done so, usually at deathbeds. A white ceramic device, like a TV remote and shaped like the wands that children use to blow bubbles, could be placed around the hump on my father’s chest. Press a few buttons and the electrical pulses that ran down the leads to his heart would slow until they were no longer effective. My father’s heart, I learned, would probably not stop. It would just return to its old, slow rhythm. If he was lucky, he might suffer cardiac arrest and die within weeks, perhaps in his sleep. If he was unlucky, he might linger painfully for months while his lagging heart failed to suffuse his vital organs with sufficient oxygenated blood.
If we did nothing, his pacemaker would not stop for years. Like the tireless charmed brooms in Disney’s “Fantasia,” it would prompt my father’s heart to beat after he became too demented to speak, sit up or eat. It would keep his heart pulsing after he drew his last breath. If he was buried, it would send signals to his dead heart in the coffin. If he was cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.
The Role of Research
On the Internet, I discovered that the pacemaker—somewhat like the ventilator, defibrillator and feeding tube—was first an exotic, stopgap device, used to carry a handful of patients through a brief medical crisis. Then it morphed into a battery-powered, implantable and routine treatment. When Medicare approved the pacemaker for reimbursement in 1966, the market exploded. Today pacemakers are implanted annually in more than 400,000 Americans, about 80 percent of whom are over 65. According to calculations by the Dartmouth Atlas research group using Medicare data, nearly a fifth of new recipients who receive pacemakers annually—76,000—are over 80. The typical patient with a cardiac device today is an elderly person suffering from at least one other severe chronic illness.
Over the years, as technology has improved, the battery life of these devices lengthened. The list of heart conditions for which they are recommended has grown. In 1984, the treatment guidelines from the American College of Cardiology declared that pacemakers were strongly recommended as “indicated” or mildly approved as “reasonable” for 56 heart conditions and “not indicated” for 31 more. By 2008, the list for which they were strongly or mildly recommended expanded to 88, with most of the increase in the lukewarm “reasonable” category.
The research backing the expansion of diagnoses was weak. Over all, only 5 percent of the positive recommendations were supported by research from multiple double-blind randomized studies, the gold standard of evidence-based medicine. And 58 percent were based on no studies at all, only a “consensus of expert opinion.” Of the 17 cardiologists who wrote the 2008 guidelines, 11 received financing from cardiac-device makers or worked at institutions receiving it. Seven, due to the extent of their financial connections, were recused from voting on the guidelines they helped write.
This pattern—a paucity of scientific support and a plethora of industry connections—holds across almost all cardiac treatments, according to the cardiologist Pierluigi Tricoci of Duke University’s Clinical Research Institute. Last year in The Journal of the American Medical Association, Tricoci and his co-authors wrote that only 11 percent of 2,700 widely used cardiac-treatment guidelines were based on that gold standard. Most were based only on expert opinion.
Experts are as vulnerable to conflicts of interest as researchers are, the authors warned, because “expert clinicians are also those who are likely to receive honoraria, speakers bureau [fees], consulting fees or research support from industry.” They called the current cardiac-research agenda “strongly influenced by industry’s natural desire to introduce new products.”
Perhaps it’s no surprise that I also discovered others puzzling over cardiologists who recommended pacemakers for relatives with advanced dementia. “78-year-old mother-in-law has dementia; severe short-term memory issues,” read an Internet post by “soninlaw” on Elderhope.com, a caregivers’ site, in 2007. “On a routine trip to her cardiologist, doctor decides she needs a pacemaker. . . . Anyone have a similar encounter?”
By the summer of 2007, my dad had forgotten the purpose of a dinner napkin and had to be coached to remove his slippers before he tried to put on his shoes. After a lifetime of promoting my father’s health, my mother reversed course. On a routine visit, she asked Rogan to deactivate the pacemaker. “It was hard,” she later told me. “I was doing for Jeff what I would have wanted Jeff to do for me.” Rogan soon made it clear he was morally opposed. “It would have been like putting a pillow over your father’s head,” he later told me.
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?”