Imagine you're brain-dead. There was an accident, and your loved ones have gathered at your hospital bed to hear the doctors say there's not much else they can do. What would you want to happen?
It's a scenario that's as terrifying as it is unpredictable. The thought of it pushes some people to iron out end-of-life decisions long before it's too late, some when they're still healthy. They sign advance directives, legal documents, which include living wills and do-not-resuscitate orders, that outline what families and doctors can and can't do when people become patients.
In the United States, dying inside a hospital rather than at home may be more realistic than we'd care to admit. Still, many Americans tend to avoid talking about their own end-of-life wishes, according to new research published Tuesday in the American Journal of Preventive Medicine. Of 7,946 people polled in a national health survey, just 26 percent had completed an advance directive.
Those who had completed advance directives tended to be older and with more education and higher incomes. White people, women, and married people were more likely to have the documents. So were, unsurprisingly, those who reported having a chronic disease and receiving regular care. Black and Hispanic respondents in all education groups reported fewer advance directives than others.
The top reason many people had not signed end-of-life documents, this survey found, was that they simply didn't know what advance directives were. That, of course, could be because for the average American, "advance directive" is pure jargon. Other respondents said they have already discussed their wishes with their families. But, even then, when the time comes, it's not uncommon for family members and doctors to disagree.
In the United States, death, and talk of death, is coming out of the shadows. Twitter followers of NPR's Scott Simon got a deeply personal look into his mother's final days at the hospital this summer. Before social media, a doctor named Jack Kevorkian, who was both highly criticized and intensely championed, pushed the idea of controlling one's own death into the national conversation. Since the 1980s, hospice care has grown from volunteer effort into a billion-dollar industry within the health care system.
Still, in the results of Tuesday's study, the 26 percent is nearly identical to the percentage from similar surveys six years ago, according to a New York Times piece on the public avoidance of advance directives. "We are certainly talking and reading about death more than we used to, but we remain in denial about its reality, no better off than we were in the 1950s," wrote Lawrence Samuel recently in Death, American Style: A Cultural History of Dying in America. Back then, denial was the norm. There was "no place in our progressive, forward-looking age to accommodate the disturbing idea of end of life."
Today, more people think health care professionals should do everything possible to save a patient's life than thought that 20 years ago, according to a recent Pew Research poll. At the same time, more people also think severely ill patients have to right to end their lives than before. If they had a say, it seems that many people would want to have control over their end-of-life care.
Just having an opinion on death, however, isn't the hard part.