Doctors are trained to keep their patients alive, but what happens when terminal disease leaves nothing more to be done? When is it time to accept imminent death and stop life-prolonging measures in favor of better-quality final days? Conversations about these important issues often do not take place because doctors don't know how to discuss them. Dr. Atul Gawande wrote about how doctors fail their patients in his #1 best seller "Being Mortal," which has become a PBS "Frontline" special of the same name that premieres Feb. 10.
"I learned about many things in medical school, but mortality wasn't one of them," says Gawande, a surgeon at Brigham and Women's Hospital and Dana-Farber Cancer Institute in Boston. "We come into medical training interested in learning how to fix things. We want to know the diseases and then what we do to reverse them. We don't teach about how you live and manage mortality—the unfixable problems. It was only in practice that I realized that a large percentage of my practice was managing people with unfixable problems: the process of aging, chronic illness, terminal illness, and how that unfolds. Even though we have an aging population, 97 percent of medical students do not receive geriatrics training. It's not even part of the curriculum."
Writing his book, Gawande followed "more than 200 patients and family members as they went through the experience of aging and serious illness and following what that experience was like. We translated that into film months and months and months of following people all the way through their story: what kind of life are they having, and then, how is it changing?" Gawande says.
"We are at this cusp, this moment, where we can open these conversations, where they are really important," he notes. "The conversation we don't have is about what people's priorities are besides just living longer. The most reliable way of find out what people's priorities are is to ask them, and we don't ask—what matters to them, their suffering, their ability to be at home, their ability to do the things that are important to them."
He cites an example of a terminal patient in the documentary whose doctors refused to give up on chemotherapy. "He says, 'I want you to understand my priority is I want at least a few weeks where I have time with my family at home.' He gets that time, because he had the conversation."
Also included in the documentary is a personal story: Gawande's own father, also a surgeon, had terminal cancer, and "had very clear wishes. His own colleagues wouldn't give him his pain medicine because he would stop breathing, and they were worried that he might die. But he had already said very clearly, 'Pain is more important to me to take care of than whether I'm going to die today or the next or five days later.' And when they refused to follow his wishes, he checked himself out of the hospital, and he went home. He voiced what many people don't voice, what were his most important priorities, and even then, people didn't listen."
Because doctors are often uncomfortable bringing up the topic and there's denial on the part of patients, it sometimes falls to loved ones to initiate the dialogue. "There are a few basic questions that you can ask your own family member who is seriously ill," Gawande suggests. "What's your understanding of where you are with your condition? What are your fears and worries for the future? What are your goals if time is short? What are you willing to sacrifice and not willing to sacrifice? Just those questions can end up making clear in a family what they want to demand, where they draw their lines and where they push for it," he says. "Being clear about that makes clear what you are fighting for, even if time is short."
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