Everyone should have this conversation.Nearly 37 percent of Americans have advanced directives for end-of-life care if they become seriously ill or unable to make health care decisions, according to a new analysis of recent research.
Roughly half of people with living wills or other types of advanced medical directives were not suffering from a chronic illness, the researchers note.
“Improving end-of-life care has been a national conversation for some time now, presumably because it will affect all of us at some point and is a very personal matter,” said senior study author Dr. Katherine Courtright of the Fostering Improvement in End-of-Life Decision Science Program at the University of Pennsylvania in Philadelphia.
The conversation has revived since Medicare, the federal health insurance program for people over age 65, began reimbursing physicians for advance-care planning counseling on January 1, 2016.
“This is a comprehensive national snapshot of the most widely promoted tool for end-of-life care planning and suggests that there is plenty of room to increase its reach,” she told Reuters Health by email.
Courtright’s team analyzed 150 studies published between 2000 and 2015 that reported on advanced directive completion in the United States. The studies included both healthy and sick patients, some focused on specific diseases or different types of advanced directives or particular populations. In total, they covered nearly 796,000 adults, of whom 64 percent were women, 65 percent were white, 81 percent were age 65 and older and 63 percent were in a nursing home.
The research team found that 36.7 percent of adults completed an advanced directive of some kind: 29 percent had living wills, 33 percent had health care powers of attorney and 32 percent had undefined advanced directives.
Older patients and those in hospice or palliative care were more likely to have an advanced directive, and end-of-life care documents were more common among those with neurologic disease such as dementia and least common among those with HIV/AIDS, according to the results published in Health Affairs.
But overall, 38.2 percent of people with a chronic illness had advanced directives compared to 32.7 percent of healthy people, a difference that wasn’t statistically meaningful.
“It was somewhat surprising how much the completion rate varied based on age, patient location and diagnosis, yet even among those with the highest completion rates, nearly half still hadn’t completed them,” Courtright said.
“The fact that only a third of sick patients are expressing their end-of-life wishes means we’re in trouble,” said Dr. Melissa Wachterman of Harvard Medical School in Boston, who wasn’t involved in the study.
“Everybody should have this conversation because our values and preferences change over time,” she told Reuters Health in a phone interview. “A healthy 72-year-old may say she wants a breathing tube, but that choice may change.”
One limitation of the study is that it doesn’t include many population groups that may not document their end-of-life care wishes formally or trust medical or legal forms that dictate advanced directives, the authors note.
“As I like to say, the form is only as good as the conversation and the shared understanding that goes along with it,” said Dr. Rebecca Sudore of the University of California, San Francisco School of Medicine who wasn’t involved in the study.
“Some people do fill out these forms with families or lawyers, and then the forms sit in the dusty recesses of a back drawer and they are not available or shared with family and friends, especially before they are needed,” she told Reuters Health by email.
Advanced care planning advocates and researchers are looking for ways to reduce the barriers to completing directives by removing legal jargon, changing the reading level and revising the medical terms used.
Sudore recommends PrepareForYourCare.org for easy-to-read directives. Other organizations, such as Aging with Dignity (bit.ly/2v9EjBq), promote family conversations by starting with “Five Wishes” they want for the end of life.
“At the end of the day, I’ve heard from too many families that they couldn’t agree on what to do for mom or dad, and it’s often not on your radar until it’s too late,” said Paul Malley, president of Aging with Dignity in Tallahassee, Florida, in a phone interview.