Discussion is key to end-of-life care planning, study finds

By Steve Tokar

People who have discussed their end-of-life care wishes with family, friends, and physicians before they are in need of such care are much more likely to have taken the next step of filling out an advance directive, according to a study led by researchers at the San Francisco VA Medical Center. Such discussions therefore should be encouraged, the study authors say.

An advance directive is a legal document used by a patient to specify end-of-life treatment wishes and to designate who will make medical decisions on the patient’s behalf, if necessary.

The researchers also recommend that policy makers consider making oral advance directives discussed with physicians legally binding in all states, since many more people talk about end-of-life care with their physicians than spell out their wishes in written form. In most states, only written advance directives have legal standing.

“Planning for end-of-life care is a process that involves many individual steps, including a lot of thought and discussion,” observes lead author Rebecca Sudore, MD, a staff physician at SFVAMC and an assistant professor of medicine at the University of California, San Francisco. “This is one of the first papers to describe a new model of advance care planning that takes all of these individual steps, rather than just advance directive documentation, into consideration.”

The study, published in the June 2008 issue of the Journal of the American Geriatrics Society, looked at 173 patients at San Francisco General Hospital who had participated in a previous study comparing preferences for different types of advance directive forms. Six months after that study, the authors asked the participants if they had made plans for their own end-of-life care.

They found that 60 percent of the participants had thought about their wishes for their own advanced care planning, 54 percent had talked about it with family and friends, 21 percent had talked with their physicians, and 10 percent had filled out advance directives.

Analyzing the results further, the authors found that the participants who had discussed advance care planning with family and friends were 12 times more likely to subsequently have discussed it with their physicians and four times more likely to have filled out an advance directive than those who had not.

“This tells us that, as physicians and policy makers, we need to do everything we can to facilitate discussions about end-of-life care between patients, family and friends, and physicians,” says Sudore.

“These discussions need to include family members, not only because it increases the likelihood that the patient will complete an advance directive, but because family are likely to be the ones at the bedside having to make some of these end-of-life care decisions.”

She also emphasizes the value of oral advance directives. “Some patients will simply feel more comfortable talking about their end-of-life wishes than filling out a form,” observes Sudore. “Oral directives can be documented in the patient’s chart. This is already legal in some states.”

She adds that extra resources may be needed to assist patients who do not have close family or friends to discuss their plans with. “In this case, completing a written or oral advance directive with their physician may be the most prudent,” she says.

Co-authors of the study are Adam D. Schickedanz, BS, of UCSF; Seth Landefeld, MD, and Brie A. Williams, MD, of SFVAMC and UCSF; and Karla Lindquist, MS, Steven Z. Pantilat, MD, and Dean Schillinger, MD, of UCSF.

The study was supported by funds from the National Institutes of Health, the National Institute on Aging, the American Medical Association Foundation, and the Pfizer Fellowship in Clear Health Communication. Some funds were administered by the Northern California Institute for Research and Education.

NCIRE - the Veterans Health Research Institute - is the largest research institute associated with a VA medical center. Its mission is to improve the health and well-being of veterans and the general public by supporting a world-class biomedical research program conducted by the UCSF faculty at SFVAMC.

SFVAMC has the largest medical research program in the national VA system, with more than 200 research scientists, all of whom are faculty members at UCSF.