JAMA Forum: To Serve Patients Better and Lower Costs of Care, Respect End-of-Life Wishes

Mark D. Smith, JD

Mark D. Smith, JD

The election debate has focused on warring narratives about whose approach to reforming Medicare is more harmful, as Democrats and Republicans promote competing solutions to lower Medicare spending. But outside of Washington, there is general agreement on one way to serve patients better and lower the costs of care: respect patients’ end-of-life wishes.

The idea of listening to patients’ end-of-life choices and talking about the capabilities and limits of medicine to heal them is so controversial that the proposal to pay physicians to do so lit a political firestorm over accusations of “death panels” that nearly derailed the Affordable Care Act before the proposal was hastily withdrawn.

I have come to believe that this “controversy” is largely a phenomenon of the hyper-partisan atmosphere in Washington and national media circles. Outside the Beltway, among medical professionals, politicians of all stripes, and—most importantly—patients themselves, there is quite a consensus about supporting discussions of end-of-life preferences. Far from wanting to avoid the topic, people are eager to talk frankly about these issues. Several recent examples illustrate this fact.
Enormous Public Interest
In February of this year, Lisa Krieger, a reporter for the San Jose Mercury News, wrote a compelling story about her family’s struggles with the difficult, agonizing decisions surrounding her father’s death. Of note is the fact that she talked openly about that most taboo of all subjects, money—itemizing charge after charge and asking the poignant question: “So how could the hospital bill for the final days of this frugal man—with carefully prepared end-of-life instructions—add up to $323,000 in just 10 days?” The public response was so overwhelming that the newspaper, northern California’s largest, established a permanent site to collect readers’ stories, offer advice and information, and direct families to appropriate resources.

In that same month, award-winning Los Angeles Times columnist Steve Lopez wrote about his father’s death. This, too, drew a staggering public response. As the paper put it, Lopez “touched a nerve when he wrote about his ailing father.” Again, the response from readers led to a permanent site, Matters of Life and Death, devoted to discussion of the issues.

And what about medical professionals? Ken Murray, MD, described the way many physicians deal with their own end-of-life decisions. “What’s unusual about them is not how much treatment they get compared to most Americans, but how little,” he wrote in a 2011 essay, sponsored by the California HealthCare Foundation (CHCF), on the Zocalo Public Square website. “For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.” Dr Murray’s essay became an Internet sensation, widely tweeted and linked.

When we at the CHCF began supporting the idea of physicians and patients documenting end-of-life wishes, we were acutely attuned to how controversial this effort could become. But our experience has been that there is broad support for commonsense changes in how we address this wrenching issue. And in private conversations with a number of Republican legislators who are staunchly opposed to the Affordable Care Act, I have been struck by how they are nevertheless passionate about improving end-of-life care because of their own personal and family experiences.

A survey conducted earlier this year by the CHCF showed that patients and families actually do want to talk about the type of treatment they prefer. The investigation, our second, found that nearly 8 in 10 Californians said that if they were seriously ill, they would want to speak with their physician about end-of-life care.

In addition, two-thirds of Californians said they want a “natural death” if severely ill, compared with only 7% who want all possible measures to prolong life. Seven out of 10 said they don’t want to die in the hospital—preferring to die at home surrounded by their families and loved ones—yet fewer than a third of dying people in our state pass away at home.

And here’s the final kicker: in this survey we asked the public, “One idea is to have insurance plans cover a physician’s time to talk with patients about treatment options towards the end-of-life. Do you think this is a good idea or a bad idea?” Eighty-one percent of all Californians (and 72% of Republicans) thought it was a “very” or “somewhat” good idea. This “good idea” is, of course, the original provision of the Affordable Care Act that prompted the hoopla about “death panels.”

What the Evidence Says
There is very good evidence that if patients and physicians talked about end-of-life issues, medical intervention would be significantly less aggressive; patients’ wishes would be better fulfilled; and, because Medicare pays for most of this treatment, the nation’s coffers would not be drained by futile and unwanted care.

When you ask physicians why they order aggressive but futile interventions, a common answer is “The patients and family made me do it.” The evidence does not support that view. There are certainly times when patients or families have unrealistic expectations about the ability of modern medicine to do the impossible. But overall, if we would ask well-informed patients what they want and then follow those wishes, we would engage in a more conservative brand of treatment than we actually deliver, treatment more like what the best informed patients—physicians—choose for themselves. This is not rationing. This is the ultimate respect for the final wishes of patients whom medicine can help but cannot cure.

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About the author: Mark D. Smith, MD, MBA, has been president and chief executive officer of the California HealthCare Foundation since its formation in 1996. CHCF is an independent philanthropy with assets of more than $700 million, headquartered in Oakland, California, and dedicated to improving the health of the people of California.

About The JAMA Forum: To provide ongoing coverage throughout this election year, JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide insight about the political aspects of health care. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.



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