Most people would agree that when the time comes, they want a "good death." But what that means is all too often left up in the air until a crisis strikes or the stricken person is no longer able to communicate his wishes or his advance planning documents are not clear. When that happens, spouses, adult children, siblings and others find themselves in the unenviable role of surrogate decision-makers, trying to divine, sometimes with very few facts and under very emotional circumstances, what people they love would have decided to do if they were able to choose.
The critical role of the surrogate decision-maker deserves more attention and support, say experts. It's incredibly stressful -- on a par psychologically with having your house burn down, says Daniel Sulmasy, a professor of medicine and ethics at the University of Chicago Divinity School and co-author of a commentary on surrogate decision-making in the Nov. 3 issue of the Journal of the American Medical Association. Too often, hospital staff and clinicians want to move into the decision-making phase without taking into account the family members' need to come to terms with the situation, he says.
It's a role that many of us may have to step into. Only about one in four people have signed advance directives that spell out their wishes if they're unable to make medical decisions on their own, according to a 2006 report published by the Pew Research Center for the People & the Press.
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