Questions of Life and Death
How can doctors help their patients better prepare for end of life? It’s an important question that Atul Gawande grappled with in his 2014 New York Times bestseller, Being Mortal, and explored during his Dr. Maurice Segal Lecture at the Sackler Center on September 15. Being Mortal was the selection for the Common Reading Book Program for incoming medical students this fall.
In addition to being a surgeon at Brigham and Women’s Hospital and a staff writer for The New Yorker, Gawande is co-chair of the Massachusetts Coalition for Serious Illness Care. The organization seeks “to ensure that health care for everyone in Massachusetts is in accordance with their goals, values, and preferences at all stages of life and in all steps of their care.” It has reached out to School of Medicine Dean Harris Berman and the state’s other medical school deans to collaborate on curriculum changes around these issues.
Here are a few things we learned from Gawande’s talk:
The goal is not a good death; the goal is a good life to the very end. When Gawande started his research for Being Mortal, “I thought I would be writing about the dying process and the choices at the very end about what kind of death you really want,” he said. But as he talked to more than 200 patients and their family members, plus scores of geriatricians and other clinicians, he found that “people have priorities that they want us to help them with serving—priorities besides just living longer. They have reasons they want to be alive and things they are alive for. Those reasons are quite different from person to person, and they change over time.”
You have to ask. The most effective way to find out a person’s end-of-life priorities is to ask them, but doctors don’t query patients about this enough. It’s crucial because “when we don’t ask, it’s no surprise that the care we give is out-of-alignment with [a patient’s] priorities. And the result of that is suffering.”
Talk is powerful. Gawande cited a 2010 study led by Jennifer Temel from Massachusetts General Hospital that followed two groups of stage IV lung cancer patients. In one group, the patients received usual oncology care, while the other received usual oncology care plus visits with a palliative care clinician at the very beginning of their treatment. The patients who had a palliative care clinician involved in their care early on ended up choosing to stop their chemotherapy earlier and had a better quality of life. In addition, Gawande said, they spent more time at home, underwent fewer surgical procedures, and spent less time in the ICU. “And the kicker was that they lived 25 percent longer,” he said. “If this was a drug, it would be a multimillion dollar blockbuster and you all would be wondering how you could own stock in it.”
Clinicians as counselors. In the 1960s and 70s, doctors had a sort of paternalistic role—doctor knows best, Gawande said. By the 80s and 90s, “we had rejected that, appropriately, in favor of the idea that what we wanted to do was be informative doctors, nurses, and clinicians. We wanted to give people clarity about what the facts were in their situations and what their options were,” he said.
But conversations Gawande had with palliative care clinicians and geriatricians made it evident that there’s a third role: counselor. “The counseor gets really clear with you what your goals are, what your priorities are, what you’re willing to sacrifice and not willing to sacrifice,” he said. “And then, yes, we talk about the options and make a recommendation based on our experience about what is most likely to succeed in achieving what matters to you. That’s a different role—an important role.”
Autonomy matters in quality of life. Gawande interviewed nursing home residents who were miserable because every aspect of their lives—bedtime, mealtime, medication time—was tightly regulated. As one person running a home told him, it was the adult children who, fearing for their parents’ safety, usually made the decision to place their parents in nursing homes. “Safety is what we want for those we love, and autonomy is what we want for ourselves,” Gawande said. “Well-being is bigger than safety and survival. Our role as counselors … is not just to make our case for what the longer-term well-being of people is, but to enable autonomy for those choices along the way.”
Courtney Hollands can be reached at firstname.lastname@example.org.