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.
If the stricken person is no longer able to communicate his or her wishes, spouses, adult children, siblings and others find can themselves in the unenviable role of surrogate decision-makers. They are forced 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, experts say. 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.
It's a role that many of us may have to step into. Only about 1 in 4 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.
An advance directive includes two types of documents. A living will describes what sort of life-sustaining and other treatment people want if they're unable to communicate their wishes, and a healthcare power of attorney designates someone to make medical decisions for a person who's unable to do so.
Unfortunately, advance directives don't always neatly address the specific medical situations that arise.
When Marianne Vakiener's 80-year-old mother entered the hospital near her home in Winchester, Va., for a hip replacement in 2008, her living will stated that she wanted no extraordinary measures used to keep her alive.
After the operation, the surgeon joined Vakiener and her father in the waiting room and told them the surgery had gone well. A little later, however, a different doctor asked permission to insert a breathing tube because the patient wasn't coming out of anesthesia as quickly as her doctors had hoped. Husband and daughter agreed.
Vakiener's mother never woke up. Eventually, clinicians determined that she had had a stroke, although they couldn't pinpoint when it happened. During the nine days that she was in the intensive care unit while the family waited to see if she would recover, Vakiener, her three brothers and her father kept her on a respirator and had her connected to an IV line that provided nourishment.
Were these extraordinary measures? It didn't seem so at the time.
"We thought, 'How can we not help her breathe and feed her if there's a chance she might wake up?'" Vakiener says. As time passed, however, it became clear that her mother probably wasn't going to come out of her coma and that, even if she did, she wouldn't have the quality of life she wanted. So the family decided to remove her breathing and feeding tubes.
"I had always thought that having a signed document would make things clear," says Vakiener. "I learned that it didn't."
Vakiener's mother had always been up-front about the fact that she would rather die than live her life hooked up to machines, Vakiener says. Vakiener's father, who held her mother's healthcare power of attorney, knew this, as did her children. Because it's hard to anticipate medical decisions that may need to be made decades hence, naming a healthcare power of attorney who knows you and your values intimately may be even more important than a living will, experts say.
Clinicians can help guide family members through the decision-making process, and there's an increasing recognition that doctors who have critically ill patients need good training in this area, says Douglas White, director of the program on ethics and decision-making in critical illness at the University of Pittsburgh Medical Center.
Physicians may not feel comfortable spelling out the likely consequences of one decision over another, in part because such predictions are difficult to make, White says. But in his research, he has found that more than 90% of family members would like to receive prognostic information in the ICU.
"There's a real hunger for this information, even though it's emotionally difficult to hear," he says.
The most effective surrogates are those who aren't afraid to ask lots of questions, says Kathy Brandt, a senior vice president at the National Hospice and Palliative Care Organization in Alexandria, Va. What are the benefits and burdens of this decision? What are other options? Will it cause a tremendous amount of pain? Here's what my loved one values more than anything — given that, what would you do?
"You don't want a passive person or someone who's intimidated by the physician," she says.
Andrews writes for Kaiser Health News, an editorially independent news service and a program of the Kaiser Family Foundation, a nonpartisan healthcare policy research organization. Neither Kaiser Health News nor the foundation is affiliated with Kaiser Permanente.