Regardless of their age, religion or ethnic background, Americans are more afraid of how they will die than of death itself, according to a national study released today.
The survey by American Health Decisions, a coalition of citizen groups concerned about ethical issues in health care, found an American public that fears dying alone, hooked up to machines, yet it distrusts the nation’s medical establishment to carry out its wishes about whether or when to “pull the plug.”
Authors of the study, believed to be the first that focuses on a broad population rather than those considered terminally ill, hope it will change the way the health care system deals with the public in preparing for death.
“Our ultimate goal … is to have people’s wishes honored no matter what they are,” said Beverly A. Tyler, lead author of the study and executive director of Georgia Health Decisions. “If that’s to be hooked up to every machine possible, no matter what, or to die at home without any machines but with their family around them for support, that’s OK too.”
Using 36 focus groups involving 385 people interviewed from March to May, the study found several clear themes about people’s attitudes toward dying: People do not want to die hooked up to machines. They would rather die in familiar surroundings with their loved ones present. People think the health care system is so focused on curing the sick that it doesn’t support their wishes about dying.
People are reluctant to discuss and prepare for their death. Many people are confused about such terms as a “living will,” thinking it means disposing of their assets while they are alive rather than giving instructions for their care near death. Even when people understand such concepts, they distrust the health care system to obey their wishes. Although they don’t want to die hooked up to a machine, they fear putting such wishes in writing because there may be times when they would accept being hooked to a machine if it could save their life.
People are distrustful of managed care systems to keep them alive and well cared for at the end of their life. People don’t want their dying to be a financial or emotional burden on their families and would be willing to forgo expensive treatment. Yet the same people say they would be willing to “spend their last dollar” to keep another family member alive.