By Alice Lee
Above, watch the full conversation featuring Dr. Atul Gawande on his new book “Being Mortal: Medicine and What Matters in the End.”
Sixty-two-year-old Peg, bedridden at Massachusetts General Hospital, knew that she was dying. The former piano teacher underwent chemotherapy to treat her sarcoma, but as a side effect of it she also developed a leukemia-like malignancy. After more aggressive procedures to fight the cancers, the treatments started to fail and the pain became so excruciating that she could not move. At this point in her care, Peg had two options: pursue an experimental treatment or enter hospice care, an option that Peg saw as “giving up.”
Above, watch Dr. Atul Gawande share the story of his daughter’s piano teacher, Peg.
Renowned surgeon, public health expert, and writer Dr. Atul Gawande shares Peg’s story and others,’ including his father’s declining health, in his new book “Being Mortal: Medicine and What Matters in the End.” At a recent Aspen Institute event featuring a discussion about “Being Mortal,” Gawande tells Peg’s story and makes us question how physicians and the medical field should go about treating terminally ill patients. Medicine has come a long way to significantly increase survival rates and allow patients to live longer. But should we instead focus on making sure patients are living meaningful lives to the very end?
“One of the things I have come to recognize… is that people have priorities besides just living longer… Just surviving in the world is not enough for most of us,” Gawande said. “We want to know that we have a certain quality of life, and that might mean that we really care about another priority, like whether our brains are intact, or whether we get to be with family, or whether we get to hang out with our dog. It’s different for each person.”
In conversation with moderator Rob Stein from NPR’s “Science Desk,” Gawande said that today’s physicians should take on more of a counselor role and take the time to ask their patients questions such as, ‘What do you understand about your illness,’ ‘What are your fears and worries for the future,’ and 'What are your goals?’ When physicians understand these priorities, they will sometimes find that aggressive medical procedures such as surgery or chemotherapy are not the best choice for treating patients.
Instead, like in Peg’s case, physicians may find that opting out of such treatments or providing palliative care may better suit the patient’s needs. According to Gawande, studies have also shown that when patients were asked about their life goals and priorities, those patients were less likely to suffer, spent less time in the hospital, and lived longer than the patients whose priorities were not acknowledged.
“You know, if I could measure anything in the health system after thinking through this book, it would be… how many people report that their doctors know their priorities and respect them in the course of their care. I don’t think we would get a very good score on that right now,” said Gawande.
The book took on an even more personal turn when Gawande’s father was diagnosed with a terminal tumor in his brain and spinal cord. Gawande then took the care and communication practices he learned from the medical professionals he interviewed and applied them to the care of his father.
Above, Gawande explains how his research for "Being Mortal" played a role in his own family's health care decisions.
“I found along the way that… there was a recognizable craft to what people did, both as patients and families and as clinicians to better manage mortality than I had seen and was doing, and that ended up influencing the care for my own father,” he said. “And so [“Being Mortal” is] this odd book where I’m discovering things, and then telling you about it, and trying to practice at it myself.”
When his father began developing paralysis in his hands as a result of a tumor in his spinal cord, Gawande learned from other medical professionals to ask what his father’s fears and worries were. His father replied that he feared that he could no longer do surgery and that he would be in pain. Gawande also asked what outcomes would be unacceptable if his father underwent surgery. His father answered that whatever he underwent could not take away his ability to do surgery and to socially interact with people.
After listing out these fears, Gawande and his father made the decision to delay surgery because there was a high risk of surgery ending his father’s own professional surgical abilities. When the condition eventually worsened and Gawande’s father retired from his career, he underwent surgery to extend his life. The surgery gave him the chance to remain socially active and to even run for Rotary District Governor in southeastern Ohio.
By knowing his father’s priorities, Gawande was able to help set out a treatment course that allowed his father to continue doing things that were meaningful to him.
“The goal is not a good death,” Gwande said. “The goal… is a good life, as good of a life as possible, all the way to the very end.”