End-of-Life Choice, Palliative Care and Counseling

Survey shows disconnect on end-of-life health careby Jay

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By Victoria Colliver
San Francisco Chronicle
February 14, 2012

Very few Californians have talked to their doctors about their end-of-life health care despite a desire to do so, according to a poll that revealed a wide disparity between how people want their final days to be handled and what they’ve done to ensure it.

The survey, released today by the California HealthCare Foundation, found that two-thirds of Californians said they would prefer a natural death if severely ill and just 7 percent wanted all possible care to prolong their lives.

And it also showed broad public support for reimbursing physicians who take the time to talk to them about their end-of-life options, the very issue that sparked the infamous “death panel” debate in 2009 over President Obama’s federal health care legislation.

Above all, results revealed a glaring need for doctors to talk to their patients about their options, and for people in general to make their wishes known to those who will have to make decisions about their care.

“This is a really important issue to people, but it’s very difficult to have these conversations,” said Dr. Mark Smith, president and chief executive officer of the California HealthCare Foundation, an Oakland philanthropic organization.

The survey, which was conducted by research firm Lake Research Partners late last year, included a representative sample of 1,669 Californians age 18 and older, 393 of whom had lost a loved one in the past 12 months.

Written instructions

The poll found that 82 percent of Californians agreed it’s important to have their end-of-life wishes in writing, but only 23 percent had done so.

Concerns about end-of-life priorities also varied by ethnicity. Latinos rated “living as long as possible” higher than any other group while African Americans put the greatest emphasis on “being at peace spiritually.”

Only 44 percent of Californians who have lost a loved one during the past year said their family member’s end-of-life preferences were completely followed and honored by their medical providers. That number dropped to 26 percent for those experiencing a language barrier and to 25 percent for patients who were uninsured at the time of death.

“When you ask doctors why it is we seem to give people much more care than they say people want, often the first response of doctors is that they say patients or families want it,” Smith said. “This survey is another piece of evidence that’s not true.”

Outline of wishes

San Francisco resident Raymond Wong, who is caring for his 90-year-old mother, said physicians don’t seem to bring up these issues with patients until it’s too late.

Wong, a retired hospital software analyst, made sure his mother, who has Alzheimer’s disease and late-stage kidney failure, has an advance directive, which provides a broad outline of her wishes. She also has a Physician Orders for Life-Sustaining Treatment, a standardized medical form on bright pink paper that families must have available to show emergency responders what specific treatments a patient does or does not want.

“In the Chinese community, death is really not talked about,” said Wong, 59, who himself has an advance directive. “For my parents and my grandparents, it was something that was bad luck to even talk about, but that’s changing with education.”

The survey also showed strong support for paying doctors to talk to their patients about their final wishes.

Among those surveyed, 84 percent of Democrats and 72 percent of Republicans agreed it was a good idea to pay doctors for those conversations.

“This seems to be a red-hot partisan issue,” Smith said of end-of-life conversations. “But when you actually talk to people – doctors, patients, politicians – on the ground, there’s really remarkable consensus.”

End-of-life decisions

The survey, “Final Chapter: Californians’ Attitudes and Experiences With Death and Dying,” can be found at links.sfgate.com/ZLHK.

For more information about Physician Orders for Life-Sustaining Treatment, a standardized medical order form that indicates specific types of treatment a seriously ill patient does or does not want, visit www.capolst.org.

Poll results

Among the findings that showed the disparity between what people said they wanted at the end of their lives and what actually occurred:

– 80 percent of respondents said they planned to talk to their doctor about their care in dying, but only 7 percent had done so.

– 60 percent said it was “extremely important” to make sure their families weren’t burdened by tough decisions about their care, but 56 percent had not expressed their wishes to the person who would be making those decisions.

– 70 percent said they preferred to die at home, but just 32 percent of those people had made those arrangements.