Survey examines what patients want at the end of life

caregiver
There is still a gap between what patients want at the end of life, and what physicians prescribe, according to a new survey.

Half of Americans feel that people at the end of their lives in the U.S. are not in control of their medical decisions, according to a new survey.

The Kaiser Family Foundation and The Economist surveyed people in the U.S., Japan, Italy and Brazil to compare end-of-life care experiences.

In the U.S., patients are more likely to have had serious conversations about end-of-life care with family members but are unlikely to do so with physicians. More than half (56%) said they had these talks with a family member or spouse, compared with 48% in Italy, 34% in Brazil and 31% in Japan.

But just 11% said they talked to a doctor about their end-of-life wishes.

Another split between the U.S. and the other countries: The majority of respondents in Italy, Brazil and Japan believe the government is primarily responsible for long-term care as people age. Americans, however, were split, with 42% saying the government is responsible and 44% saying families are primarily responsible.

RELATED: 5 ways the healthcare industry can improve end-of-life care

In its accompanying report, The Economist notes that there is often a wide gap in what people want in end-of-life care and the treatments they receive. Most of the American survey respondents (71%) said they would prefer to die at home, but far fewer (41%) expect to do so.

Providers need to be encouraged to have direct and frank conversations with patients on end-of-life care, Susan D. Block, M.D., director of Harvard Medical School’s Serious Illness Care Program, told the publication.

“Talking almost always helps and yet we don’t talk,” she said. “Every doctor needs to be an expert in communicating.”

These conversations can be hard for physicians to initiate, and doctors may lack needed training to have these important talks, as FierceHealthcare has previously reported. But groups like the National Quality Partners are devising new guidelines to help make it a little easier.

The survey, which spoke to about 1,000 people from the U.S., Italy and Japan and about 1,200 from Brazil, also dove into other goals patients have for end-of-life care. More than half (54%) of Americans said it is very important to them that their families are not burdened by their care, and 42% said they want to be comfortable and without pain. Just 23% said living as long as possible is extremely important to them.

RELATED: Providers urged to improve advanced illness care

Palliative care programs are gaining steam, though many fall short of patient needs. When it’s done effectively, inpatient palliative care has been shown to save hospitals money and reduce length of stay.