Disparity Between Preferences and Actions in End-of-Life Care

It's a paradox of American health care that has been present for years, and a new study reinforces it: the overwhelming majority of Californians say they want to die a natural death, at home, but less than one in four has actually put their wishes in writing. This lack of clarity can leave loved ones and doctors to try to sort out wishes, often during a time of crisis.

The statewide survey is from the Oakland-based California HealthCare Foundation. While so few have put their wishes in writing, the poll also found that 82 percent of Californians said it was important to do so. Another paradox.

"When we juxtapose that to what actually happens to people," said Kate O'Malley, senior program officer at the Foundation, "We realize there is a lot of work to be done in helping people find a way to state their preferences and make sure that their family members and their providers know what their preferences are."

The survey, Final Chapter: Californians' Attitudes and Experiences with Death and Dying, found many other wide-ranging disparities between what people said they wanted and what actually happened:

• 70 percent want to die at home, but 32 percent actually do so; most die in a hospital or nursing home
• 60 percent do not want family members burdened by tough decisions, saying it's "extremely important," but fewer than half have talked to loved one about personal wishes
• 8 in 10 say if they were seriously ill, they would like to talk to a doctor about their treatment wishes, but only 7 percent have done so

On this last question of doctors and patients talking about end-of-life wishes, Kate O'Malley pointed to a chicken or the egg problem. "There was one study that showed that 75 percent of patients wanted to talk about this and were waiting for their doctors to bring it up," she said. "Then when they (researchers) talked to the doctors, they found that many of them wanted to talk to their patients about this, but they were waiting for their patients to bring it up. So there's this question about what is the right moment?"

This desire to talk with their doctor about end-of-life wishes is especially true for older patients, yet only 13 percent of those over 65 have done so. In a New England Journal of Medicine commentary last December, a team of palliative care experts strongly encouraged doctors with elderly patients to bring up the subject.

Just over a week ago, Lisa Krieger, a reporter at the San Jose Mercury News, wrote movingly of the story of her own father's death. He had left clearly written instructions, yet what she experienced during the final ten days of his life captures the difficulty of making wrenching decisions, incrementally, during a health crisis. Her story triggered an outpouring of reader comments, with overwhelming support for being clear about wishes, well in advance. Sharone Demaree posted this comment on the Mercury News' Facebook page:

My mother died one year ago, March 1. The hardest decision I think we ever had to make was to decide when to cease all attempts at prolonging death. I strongly urge any and all who read this to sit down and talk with your family and document their wishes.

Yet, even when wishes are made clear in advance, the survey found only 44 percent of Californians said those wishes were completely followed. But for a patient with a language barrier, that number drops to 26 percent. Kate O'Malley encourages people who feel that their wishes are not being respected to "ask to be cared for by a different person," adding that it's also critical that the entire family be clear of the loved one's wishes as well.

The survey was conducted last fall and included 1,669 Claifornians 18 and older, including 393 people who had lost a loved one in the prior year. The survey was conducted by Lake Research Partners.

Related:

KQED's Forum: End-of-Life Decisions

California HealthCare Foundation Video about the Physicians Orders for Life-Saving Treatment or "POLST" form: