Are Americans Afraid to Talk About Dying?
Talking to Family, Friends Helps Make End-of-Life Decisions
March 23, 2005 -- We know our deaths are inevitable. Yet the spotlight of the Terri Schiavo tragedy shows that few of us have told our loved ones how we'd like to live out our dying days.
A FindLaw.com poll shows that one in three Americans has no living will. A telling, if unscientific, poll of WebMD readers shows the same thing: 71% of us don't have a living will. Why? Three out of four say they just haven't gotten around to it.
We resist thinking of our own annihilation, says geriatrician and RAND researcher Joanne Lynn, MD. Lynn has written two books on end-of-life care: The Handbook for Mortals: Guidance for People Facing Serious Illness, and Improving Care at the End of Life: A Sourcebook for Managers and Clinicians.
What makes it harder than ever, Lynn says, is that the deaths we face are different than the deaths of previous generations. When people used to call death the "long goodbye," they meant it lasted a long time. Today it means that the goodbye itself goes on and on.
"Now most people have a long period of fragile balance at the end of life where medical care is propping them up," Lynn tells WebMD. "It is a long walk on a tightrope; a long skate on thin ice. There are a number of opportunities for shaping how this will happen to you that didn't used to exist. ... And we have lots of time for our doctors and for our families to make bad decisions."
Dying seems so impossible when we're healthy, says Nathan E. Goldstein, MD, assistant professor of geriatrics at Mount Sinai School of Medicine in New York.
"But when we do get sick, if we haven't had these discussions, our doctors and families don't know what we want," Goldstein tells WebMD. "They don't always have to be formal discussions. The most difficult thing is to start these conversations."
Few of us will have simple answers to the most troubling question raised by the Terri Schiavo case -- what kind of medical care would we want if we weren't able to speak for ourselves?
"We don't just have these answers written on our shirtsleeves so we can read them off," Lynn says. "We need to think about these issues over and over. These are not things you do once and they are all taken care of. As life circumstances change, they need to be rediscussed."
When deciding about your end-of-life care, Goldstein says, only one thing really matters: Living the end of your life according to your own goals and values.
"The important thing to remember is that what matters is not what the doctor or the family would want, but what the patient would want," he says. "Our job as doctors is not to elicit what the family would want but has the goal of learning what the patient would want."