In December, the prestigious Annals of Internal Medicine journal printed an article written by Penn faculty members Scott Halpern and Ezekiel Emanuel that posed a titillating question right in the headline: “Can the United States Buy Better Advance Care Planning?” The paper came out just months after the Institute of Medicine published a stark 500-page report suggesting that neither patients nor their physicians are doing a good enough job making end-of-life health care decisions. The institute’s experts suggested that the health care system provide financial incentives to providers who succeed in getting patients to complete advanced-care directives detailing exactly how they want to be treated when facing a terminal illness.
The debate over end-of-life planning is as much about economics as it is about ethics and emotions: According to Medicare data, per-capita spending on patients in their final year of life is nearly four times higher than that of living Medicare beneficiaries. Medicare spending peaks at age 96 at $14,278 per person per year — unless, that is, those who died during the year are included. In that case, average spending jumps to $16,145.
Halpern and Emanuel have more than a passing interest in the challenge of end-of-life decision-making. Halpern, a professor at the Perelman School of Medicine at the University of Pennsylvania, serves as director of the Leonard Davis Institute’s Fostering Improvement in End-of-Life-Decision-Science (FIELDS), a program launched in 2012 that unites researchers both on and off campus to examine a range of challenges that patients, caregivers and health providers face in dealing with life-threatening diseases.
Wharton health care management professor Emanuel made news nationwide last fall with a story in The Atlantic titled “Why I Hope to Die at 75,” in which he expressed his lack of confidence in the quality of treatments available for people suffering diseases of aging. Emanuel insisted that his own advanced-care directive would allow for palliative care beyond age 75 but nothing else — “no ventilators, dialysis, surgery, antibiotics or any other medication,” as he put it. At about that time, a 29-year-old woman in Oregon named Brittany Maynard made headlines of her own by deciding to take her own life rather than enduring tortuous treatments for what would ultimately be an incurable brain tumor.
“The main concern of most [terminally ill] patients is psychological — they’re depressed, and that’s what’s driving them.”— Zeke Emanuel
Emanuel has made it clear he doesn’t endorse decisions like Maynard’s. “This has been my position for more than two decades. I don’t think legalizing euthanasia and physician-assisted suicide is where we should focus our attention,” Emanuel says.
Instead, he suggests that the health care system should focus on better preparing physicians to recognize and deal with the psychological turmoil that patients endure when they’re facing end-of-life decisions. “The main concern of most [terminally ill] patients is psychological — they’re depressed, and that’s what’s driving them,” Emanuel says. He adds that it would be misguided to think of assisted suicide as a substitute for advanced-care planning. “A tiny proportion of dying patients are going to make use of a discussion of assisted suicide, even if it’s legalized. Less than 10% of patients even discuss it, and less than 3% actually use assisted suicide. So if you want to solve the problem of improving end-of-life care, addressing depression should be a primary focus.”
As for the Institute of Medicine’s proposal that health providers should be paid based on how good a job they do discussing end-of-life choices with patients, Emanuel’s feelings are mixed. “The idea is to compensate doctors for doing it because it’s time out of the day. I understand that and I think that’s right,” Emanuel says. “But I also think that’s probably not the biggest barrier to [completing advanced-care directives]. As an oncologist, I’ve had many of these discussions: ‘We don’t have a treatment. Your cancer is growing. It’s going to kill you. How are we going to plan for the remaining time you have?’ This is an extremely hard discussion. It’s hard from an emotional standpoint. It’s hard to ensure you’re involving all the family members. It’s not something you accomplish in one discussion. These are big barriers.”
Overcoming those barriers presents great opportunities for improving the U.S. health care system, Emanuel argues — a viewpoint that’s shared by other high-profile physicians. “The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit,” writes physician and best-selling author Atul Gawande in his recent book Being Mortal: Medicine and What Matters in the End. “These days are spent in institutions — nursing homes and intensive-care units — where regimented, anonymous routines cut us off from all the things that matter to us in life.” A key conclusion, he writes, is that “we have the opportunity to refashion our institutions, culture, and conversations to transform the possibilities for the last chapters of all of our lives.”
‘A Low-quality Death’
Since its launch, FIELDS has undertaken a variety of research projects aimed at unraveling the many complexities involved in end-of-life decisions. They include the role of family members in determining health care preferences, the link between perception and reality in advanced-care directives, and the impact of “default options” — pre-selected measures presented to patients by health providers — in decisions about what should happen when someone is facing an incurable illness.
“It’s a low-quality death and an expensive death — the worst of both worlds.” –George Loewenstein
Among the outside experts tapped for insight into these tough issues is George Loewenstein, professor of economics and psychology at Carnegie Mellon University. Loewenstein co-authored a 2013 FIELDS study showing that default options offered in advanced-care directives prompted many patients to forgo comfort-oriented care in favor of life-extending measures –even though most of the study’s participants said they would prefer comfort-oriented care.
“A lot of work shows that people would like to die at home, not in pain, but instead a lot of them die connected to tubes in the ICU, and in pain. It’s a low-quality death and an expensive death — the worst of both worlds,” Loewenstein says.
Getting more in tune with what patients want would improve both quality of care and cost of care, Loewenstein argues. An earlier study co-authored by Loewenstein revealed that on average, people are willing to give up more than a month of life in order to die comfortably.
Loewenstein says that more research needs to be done to determine effective methods for encouraging patients to choose hospice care over extreme procedures aimed at extending life. This may require a complete re-thinking of how advanced-directive forms are written, he adds. “The research calls into question whether advanced directives are really an effective way to improve end-of-life care. It highlights the fact that people’s preferences for end-of-life care are so easily malleable by factors that shouldn’t make a difference, like what the default is on the advanced-directive form. We are interested in trying to improve quality of care at end of life, and reducing spending on procedures that don’t prolong life yet seem to make people miserable.”
FIELDS member Joanna Hart, an attending physician and post-doctoral research fellow at Penn, has been working with Halpern to study how a concept called “anticipated regret” further muddies end-of-life decision-making. “When patients and family members are participating in shared decision-making — and they have to match potential outcomes with the patient’s health and life goals — they have certain expectations,” Hart explains. “The literature in behavioral economics and psychology shows that when people are thinking about choices that are equally valid but have different potential outcomes, they try to minimize their future regret. They create these anticipations of what will come.”
Hart and Halpern are completing a study that examines expectations in decision-making, so they can propose effective interventions. “The idea would be to manipulate their expectations to improve their future well-being,” Hart says. “We want to minimize the chance that they’ll look back later and wish they had made a different decision.” They hope to prove that intervening early in the end-of-life decision process will prompt more patients to make decisions that are better aligned with their health goals.
“End-of-life discussions need to happen earlier and be much more integrated into standard care, rather than being an afterthought,” Hart adds. “It’s really about identifying patients’ goals and matching that to the clinical care.”
Too Many Decisions, Too Little Time
Another factor that complicates end-of-life choices is “decision fatigue,” the well-proven phenomenon that one’s decision-making quality deteriorates as the quantity of required decisions grows. It’s a problem that affects not just patients, but also physicians involved in weighing the options facing the terminally ill, says Mary McKenzie, an attending pulmonary and critical care physician at Legacy Health System in Portland. McKenzie became a member of FIELDS while completing a fellowship at Penn, and she is currently completing two studies on the impact of decision fatigue in both inpatient and outpatient settings.
“End-of-life discussions need to happen earlier and be much more integrated into standard care, rather than being an afterthought.” –Joanna Hart
In one study, McKenzie found that attending physicians in intensive-care units, on average, make 102 decisions in a matter of just hours. The sheer number of decisions surprised her, and she’s now analyzing the results further to determine whether the stress of it all increased the tendency towards “status-quo” decision-making.
“In decision-fatigue research we find that the more decisions you make, the less likely you are to make new or different decisions. You stick with what’s happening already because it’s the easier choice,” McKenzie says.
She adds that recognizing decision fatigue and combating it are important skills that are not taught in medical school or even in residency programs — a problem that she believes should be addressed. Physicians could be trained to avoid decision fatigue by forming a few new habits, she says. “Even something so simple as having a snack break helps people regain their decision-making ability. It’s a pretty easy intervention to say, ‘OK, we’ll do our shifts for two hours then everyone is going to have a granola bar.’ And the hospital should provide the granola bars. It’s a low-cost intervention that may be beneficial.”
Emanuel agrees that the effort to improve end-of-life planning will ultimately have to start in medical schools. “Much more could be done to train doctors in how to communicate end-of-life issues,” he says. “This is not something you’re born with, but it is something you can be trained to do. And the more you do it, the better you get at it. We need more training, not just in med school but throughout the careers of all the doctors who are out there now dealing with patients who are going to die.”