The main idea of California family medicine physician Ken Murray’s November 2011 essay, “How Doctors Die” is simple: “Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Murray wrote.
Docs recognize when enough is enough, so they choose to die at home rather than pursuing painful, draining, pricey, fruitless treatments in hospitals. Murray tells poignant stories – he leads with a vignette about a physician friend who, upon learning of his pancreatic cancer, never set foot in a hospital again, living his life until cancer robbed him of it.
Stacy Fischer and Daniel Matlock, both geriatricians and palliative care physicians at University of Colorado Hospital, found that data went against the grain of intuition when it came to doctors’ end-of-life decisions as compared to the rest of us.
The story went viral and was ultimately picked up by the New York Times and others. The work also aligned with conventional wisdom. Stacy Fischer, MD, and Daniel Matlock, MD, MPH, both University of Colorado School of Medicine geriatricians and palliative care specialists practicing at University of Colorado Hospital, had little doubt that Murray was right. Doctors have all seen patients who sought healing and recovery when neither was possible, often with great emotional, physical and economic costs. Doctors vow not to let it happen to them.
But something bothered Fischer and Matlock about the Murray essay, and about other references to doctors dying differently: They were all anecdotal, based around “a hypothesis, and not a truth,” Matlock said.
“And it was being billed as a truth,” he added.
Nearly a half decade later, Matlock, Fischer and colleagues had collected and analyzed data on 9,914 deceased physicians and 191,426 dead non-physicians from across the country to get to the truth. They concluded that doctors don’t die differently at all. Those they studied didn’t spend meaningfully more time in hospice care – an admission of acquiescence to nature’s imperative – and they spent about the same amount of time in hospitals and intensive care units in the last months of life as the non-physician group.
Their findings were published in May, in the Journal of the American Geriatrics Society, under the title “How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life.”
“It’s a paradigm shift of what we ‘know,’” Fischer said.
The study took a long time, in no small part because Fischer and Matlock, in addition to their clinical work on the floors of UCH, had to figure out how to find data on deceased doctors. They tried Kaiser Permanente; they tried the Group Health Cooperative; they tried the Health and Retirement Study. None had more than a few dozen records, far too few for statistical significance. The breakthrough came with the American Medical Association, which has a master file of its physician members, “so they can mail us ads,” as Matlock put it. To avoid mailing ads to the families of deceased physicians, they also have a “dead docs file.”
Matlock and Fisher used National Institutes of Health career development grant money to buy that data set, which they paid another company to reconcile with Medicare billing records in a way that would decouple names from treatments from 2008-2010. They chose the non-physicians randomly from the Medicare Enrollment Database. The huge sample sizes enabled a high degree of statistical accuracy.
The findings surprised them, Fischer said. They expected that doctors would die in hospice 50 to 60 percent of the time as opposed to 40 percent of the time for the general population; that they would stay in hospice a week or two longer, having recognized the futility of further care; and that they would much spend less time in hospitals and ICUs. None of it turned out to be the case.
This is more than just another interesting, counterintuitive finding. Patients who end up dying within six months of their diagnosis consume about a quarter of all health care dollars. About a quarter of them – us – will land in an ICU during their last month of life. About a quarter of them will die in the hospital. In addition to being expensive, Matlock said, this sort of hospital care is harder on patients and families, and not just physically. Studies have found that families of patients who died in ICUs have more grief and more post-traumatic stress disorder.
There are far-reaching implications, Fischer and Matlock added. Our health care system is “driven by utilization,” as Fischer put it – meaning that the default is toward more care rather than less. In addition, said Matlock, advanced medical technologies enable us to delay the final reckoning in ways once unimaginable. With such tools at hand, death has gone from inevitable tragedy to being viewed as a medical failure.
“When someone dies, there’s an M&M [morbidity and mortality] conference to find out what went wrong,” Matlock said.
Knowledge not enough
In such an environment, the assumption is that physician-patients and their families – the ultimate decision-makers in these cases – will opt for less care rather than more. After all, Fischer said, “If you talk to a room full of people, very few will say, ‘I’d like to be in the ICU, hooked to as many machines as possible, with my family in the next room talking about me in the third person.”
But even doctors and their families don’t seem to be avoiding that. And if doctors can’t, how can those of us with far less experience with the pros and cons of end-of-life care?
“So much of the conversation is, ‘If people just knew more, if they could just see what this looks like at the end of life, they wouldn’t want it,” Fischer said.
Yet their research found that doctors did want it, at least amid our current medical system and culture.
“The bull looks different when you’re in the ring,” Matlock said.
Their findings provide hard evidence that change has to happen at the broader health system level.
“I am very much into this world of empowering patients,” Matlock said. “But I think if we really want to change these things, it’s got to be system and culture.”
He’s talking about a world where patients, families and health care providers base decisions on sober assessments of the benefits of such things as chemotherapy for stage 4 cancer or resuscitating patients who will soon fail regardless.
Matlock and Fischer admit their study is not perfect. The doctors were overwhelmingly (95 percent) male, reason enough for one journal to pass on the article, they said. But that simply reflected the reality that doctors educated in the male-dominant 1950s were passing on a half century later. Physicians did use slightly more hospice care – about two days on average. While statistically significant, Fischer said, that’s not clinically meaningful – an important difference.
Their paper has gotten some attention, but it has yet to go viral like the Murray essay that inspired it. Perhaps it’s a reflection of a world in which alluring opinion drowns out stubborn fact.
Matlock and Fischer continue to try and get the word out, not only about their findings, but also about what they see as the foundational changes needed for more humane, rational end-of-life care. It depends on discussing palliative care with patients early in the trajectory of illness, Fisher said, “where you continually evaluate the value of care and continually work with families and patients to make sure their goals are being met.”
Will she and Matlock approach the end of their own lives differently now?
“We’ve had a lot of conversations about, ‘I would take this, but not this,” Matlock said.
“But we’re all human,” Fisher added. “Doctors are human, and we all get scared of dying.”