In 2005, media attention swirled around Terri Schiavo, the 41-year-old Florida woman whose husband wanted to take her off life support after she’d been in a persistent vegetative state for 15 years. Her husband spent more than seven years fighting Schiavo’s parents for a court order to pull his wife’s feeding tube, claiming she would not want to be kept alive through artificial means. The case was so highly charged it was debated by the Florida legislature and U.S. Congress. Eventually, Schiavo’s husband prevailed, and Terri Schiavo died on March 31, 2005.
Some experts say much of this anguish could have been avoided had Schiavo completed an advance directive, or living will, a document that would have made her medical and resuscitation preferences known before she became incapacitated. Yet preparing an advance directive is a complicated psychosocial process, said Peter Ditto, PhD, a professor of psychology and social behavior at the University of California, Irvine.
“It can be a rocky road to get others to honor someone’s wishes,” he said at an invited address at APA’s Annual Convention, where he presented research on the psychology and politics of end-of-life decision-making.
Despite overwhelming public support for advance directives, said Ditto, only about one in four Americans ever completes one. Even among the critically ill — including dialysis and cancer patients — few people use them.
One reason for this reluctance: Fewer than 10 percent of people say they want their end-of-life wishes followed exactly, according to a 2005 study co-authored by Ditto in The Gerontologist (Vol. 45, No. 1). The rest say they want their loved ones to have at least some leeway when it comes to making decisions about their care.
“Despite the fact that most of us are in favor of having control over decisions about our care at the end of life, we just don’t seem to want to micromanage our own deaths,” he said.
Ditto’s research also indicates people harbor a variety of biases when trying to predict others’ end-of-life wishes. In a 2003 study in Health Psychology (Vol. 22, No. 6), for example, Ditto and his team asked participants over the course of three years to assess their preferences for life-sustaining treatment given nine scenarios, including Alzheimer’s disease with moderately severe cognitive impairment, emphysema with severe physical limitations but no cognitive impairment and a coma with no chance of recovery. The researchers found that only about 60 percent of participants expressed the same preferences all three years. In a follow-up study, they found that when participants did change their minds about a treatment, most didn’t realize it, assuming that their past decisions were the same as their current ones (Health Psychology, Vol. 27, No. 2).
These ongoing preference changes create problems for family members when it comes to predicting their loved one’s wishes, Ditto said.
“It seems unlikely that others will be able to predict you better than you can predict yourself,” he said.
And if people don’t realize their wishes have changed, it’s unlikely they will update their living wills to reflect new preferences, he added.
Such concerns undermine the goal of helping people have the end-of-life experience they’ve envisioned. Therefore, instead of focusing only on preparing advance directive documents, he encourages people to also have a candid discussion with family and health-care providers about their end-of-life wishes and delegate their care to a trusted surrogate. A 2009 study in the Archives of Internal Medicine (Vol. 169, No. 5) found that such end-of-life discussions lower health-care costs and improve patients’ quality of death.
“Psychological science can help to make these discussions go more smoothly and make people — both patients and their surviving loved ones — happier with how the end of their life goes,” Ditto said.
Amy Novotney is a writer in Chicago.
APA’s Public Interest Directorate offers additional resources on end-of-life planning.