Rethinking End-of-Life Care

Bill Pirl. Photo by Joshi RadinBill Pirl. Photo by Joshi Radin
By Jessica Cerretani

Bill Pirl MD ’94, MPH ’08 wants to talk about death. More specifically, Pirl—the 2013–2014 Helen Putnam Fellow and director of the Center for Psychiatric Oncology and Behavioral Sciences at Massachusetts General Hospital (MGH)—wants oncologists to discuss the dying process with their terminally ill patients. It’s a conversation that many of us assume comes naturally to physicians, but one, says Pirl, that rarely occurs. “There’s a lot of uncertainty about end of life, and it can be difficult even for physicians to discuss it,” he says. “There’s no shame in that. But the question is, how can we help those meaningful conversations occur?”

Pirl’s focus has long been the months, weeks, and days that mark the end of life for people with cancer and other terminal illnesses. During this time, many patients and their families say they prefer the comfort of palliative care to aggressive treatment, yet most patients continue to receive chemotherapy. Although chemotherapy can be a lifesaver for some cancer sufferers, by the end of life its toxic effects may outweigh any benefits: it stops being therapeutic and may actually hasten death.

Unlike chemotherapy and similar treatments, palliative
 care doesn’t attempt to cure or slow disease. It relies on medication, counseling, and other approaches to help relieve symptoms, pain, depression, and stress; provides psychosocial support; and helps patients and their families make medical decisions. (In contrast to hospice care, which is typically reserved for the dying, palliative care can also be useful for patients with serious chronic illnesses, such as congestive heart failure, kidney failure, and Alzheimer’s disease.)

In 2010 a groundbreaking study by Pirl and his colleague Jennifer Temel, the clinical director of thoracic oncology at MGH, found that palliative care may have additional benefits. They discovered that of 151 patients with metastatic non-small-cell lung cancer, those who received palliative care
 had fewer symptoms of depression and better quality of life. Surprisingly, even though people in the palliative care group tended to receive less-aggressive treatment, they lived longer than those who had only conventional oncological care. Published in the New England Journal of Medicine, the findings “show oncologists that their patients don’t have to choose between quantity and quality of life,” says Pirl. “Palliative care may offer both.”

The desire to aid oncologists in their treatment decisions for terminally ill patients drove Pirl to apply to the Radcliffe Fellowship Program. His initial project involved reviewing electronic medical records from the 151 patients in his 2010 study to pinpoint predictors of what eventually led them to discontinue chemotherapy.

“My original goal,” he explains, “was to identify when end of life begins, and then determine the point when chemotherapy goes from beneficial to harmful during that time.” But it soon became obvious that forming clear parameters for end of life would be impossible. Only a minority of patients—even those close to death—discussed discontinuing chemotherapy with their oncologists. Indeed, most patients didn’t stop chemotherapy until they suffered a complication or were hospitalized.

The results were surprising, even to oncologists themselves. “Oncologists are really good at discussing when to start chemotherapy,” Temel explains. “Our perception is that we talk about chemo all the time. But these findings show that we’re not actually having some of these conversations with patients.” One reason: oncologists, she says, tend to base treatment decisions on cold, hard data. With little data available on the process of ending chemotherapy, such decisions rarely occur, leaving many patients without the opportunity to pursue palliative care and discuss end-of-life concerns. “We need to engage patients and their families about end-of-life care before they are too sick to have those conversations,” Temel says. “Bill’s research is exciting because it could inspire oncologists to initiate these discussions much earlier in the process.”

Pirl’s unexpected findings have led to the creation of several new projects aimed at helping oncologists to do just that. One, which he and Temel are piloting at MGH, seeks to improve physicians’ determinations of when chemotherapy is no longer beneficial. Currently, oncologists rate patients’ self-reported well-being and daily activity and use the score (known as performance status) to determine whether or not to continue administering chemotherapy. Yet such assessments are notoriously unreliable, colored by both patients’ and oncologists’ biases. To establish an objective measure of performance status, Pirl and Temel will outfit cancer patients with wrist monitors that track their activity. The results, they hope, will give oncologists a more accurate view of patients’ ability to withstand chemotherapy and help them decide when palliative care may be more appropriate.

The Fellowship Program has also connected Pirl to peers in diverse fields—with felicitous outcomes. “I was a bit skeptical about what people outside medicine could bring to my project, and vice versa,” he admits. “But I’ve been pleasantly surprised. It’s been one of the most gratifying aspects of this year.” During his time at Radcliffe, he met another fellow, social psychologist Jennifer Lerner, whose work focuses on emotion and decision making. Together they are planning a study to explore how oncologists’ emotions may affect their ability to make treatment decisions.

Pirl’s project has evolved from his initial plans, but the ultimate goal remains the same: to provide seriously ill patients with the opportunity to spend the remainder of their days comfortable and supported, without unnecessary suffering. “I want to help physicians understand when to shift attention from aggressive treatment to palliative care,” he says. “The tipping point between the two is still elusive—but we’re getting closer.”

Surprising Result

Alyssa Leader '15. Photo by Joshi RadinAlyssa Leader '15. Photo by Joshi Radin

Sometimes the key to success is discovering what doesn’t work. As part of his initial project, Pirl asked one of his Radcliffe Research Partners, Alyssa Leader ’15, a psychology concentrator, to help him with a systematic review of end-of-life chemotherapy by poring over previous studies. The results, he hoped, would identify factors involved in the decision to stop treatment. The surprise, however, wasn’t what they found but what they didn’t. “There just isn’t a lot of good research on this topic,” Pirl explains.

Rather than disappointment, Leader says she feels pride in her part in Pirl’s project, which helped spur his decision to change focus. “Dr. Pirl has been an excellent mentor to me,” she says. “This experience has really helped me learn to roll with the punches and be open to change.”

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