When we asked Californians what a "good" death meant to them in a recent survey, they said they would prefer to die naturally at home without being a burden, financially or emotionally, on their families.
All too often, that's not what happens.
Seven out of 10 Californians would prefer to die at home, yet fewer than a third passed away there. Two-thirds of Californians would prefer a natural death if they were severely ill, while only 7% would want all possible care to prolong life.
Only 44% of Californians who lost a loved one in the last 12 months told us their loved one's end-of-life preferences were completely followed and honored by medical providers. These numbers drop to 26% for those whose loved ones experienced a language barrier and 25% for those who were uninsured at the time of death.
The reasons for this gap between preference and reality are complicated, but a big factor is that patients' preferences were not discussed and documented before a life-threatening crisis occurred. Our survey, Final Chapter: Californians' Attitudes and Experiences with Death and Dying, finds that nearly 8 in 10 Californians said that if they were seriously ill, they would want to speak with their doctor about end-of-life care, but fewer than 1 in 10 report having had such a conversation, including just 13% of those age 65 or older.
As part of its original package to expand health coverage, the Obama Administration proposed requiring public and private insurance to cover voluntary conversations about end-of-life planning between patients and providers. After the issue became politicized, the idea was dropped from the final bill.
Ironically, our new poll finds broad support among Californians, regardless of political affiliation, for reimbursing doctors to talk about end-of-life options. Eighty-four percent of Democrats, 72% of Republicans, and 80% of Independents say it would be a good idea to pay for such a conversation.
Health care professionals must also change their culture to ascertain and accommodate the wishes of their dying patients. Most doctors don't like talking about death — after all, we are taught to save and preserve life. And, unfortunately, sometimes doctors do more than we should.
The oft-heard excuse that "the patients made us do it" is also misguided. There are certainly times when patients or their families have unrealistic expectations about the capacity of modern medicine to do impossible things. But our new survey suggests that, for the most part, if you actually ask patients, they would want a much more conservative brand of treatment than we deliver.
Still, no medical provider can respect the wishes of critically-ill patients if the provider doesn't know what those wishes are. While 82% of patients say that it is important to put their wishes in writing, less than one quarter has actually done so. More than half say they have not talked with a loved one about the kind of care they want at the end of life. Without clear guidance from a patient or their family members, the result by default is the medical equivalent of the full-court press.
That is doubly disconcerting, because many doctors would never subject themselves to the end-of-life onslaught of medical interventions that patients get.
In a recent essay, Dr. Ken Murray movingly describes what many doctors think. "What's unusual about them is not how much treatment they get compared to most Americans, but how little," he wrote in an essay for Zócalo Public Square. That's because we know the limits of medicine's ability to save the very old, sick, or terminally ill. And we know the physical pain, emotional trauma, and financial costs to our families that useless medicine can inflict.
As highlighted in frank and moving columns by Lisa Krieger and Steve Lopez about their fathers' last days, the end of life is turbulent for patients, their families, caregivers, and doctors. It should not be a guessing game as well.
There are ways for people to articulate what kind of care they want. Advance directives and a simple document known as a POLST form can help doctors and families avoid the anguish and regret of thinking they did not do the right thing.