By Atul Gawande – New York Times.
A couple of years ago, I got a call from the husband of Peg Bachelder, my daughter Hunter’s piano teacher. “Peg’s in the hospital,” Martin said.
She’d been treated in 2010 for a rare pelvic cancer requiring chemotherapy, radiation and radical surgery.
She returned to teaching and refilled her student roster in no time. She was in her early 60s, tall, with a lovely, gentle way that made her immensely popular. Two years later, however, she developed a leukemia-like malignancy caused by her treatment. She went back on chemotherapy but somehow kept teaching. Then for two straight weeks, Peg postponed Hunter’s lessons. That was when I got Martin’s call from the hospital.
He put his cell on speaker for Peg. She sounded weak and spoke in long pauses. She said the leukemia treatment was not working. It had impaired her immune system, however, making her sick with fevers and an infection. Imaging also showed that her original cancer had come back in her hip and liver. The recurrent disease caused immobilizing hip pain and made her incontinent. That was when she checked into the hospital. She didn’t know what to do.
What had the doctors said they could do? I asked.
“Not much,” she said. She sounded utterly hopeless. They were giving her blood transfusions, pain medications and steroids for the fevers caused by her tumor. They’d stopped giving her chemotherapy.
This is the moment we continue to debate in our country. What is it we think should happen now? Her condition was incurable by established means. So should she press the doctors for other treatments, experimental therapies, anything with even a remote chance of keeping her going, no matter what? Or should she “give up”?
Neither seemed right. But for more than a decade in medical practice, I had not really understood what other choices might exist. I wasn’t effective in these situations. And it bothered me — as a surgeon caring for patients with problems I often could not fix and then as a son with a father in his 70s experiencing mounting difficulties in his life. So for three years, I researched a book on what has gone wrong with the way we manage mortality and how we could do better.
I spoke with more than 200 people about their experiences with aging or serious illness, or dealing with a family member’s — many of them my own patients, some in my own family. I interviewed and shadowed front-line staff members in old age homes, palliative- care specialists, hospice workers, geriatricians, nursing home reformers, pioneers, and contrarians. And among the many things I learned, here are the two most fundamental.
First, in medicine and society, we have failed to recognize that people have priorities that they need us to serve besides just living longer. Second, the best way to learn those priorities is to ask about them. Hence the wide expert agreement that payment systems should enable health professionals to take sufficient time to have such discussions and tune care accordingly.
I also discovered that the discussions most successful clinicians had with patients involved just a few important questions that often unlocked transformative possibilities: (1) What is their understanding of their health or condition? (2) What are their goals if their health worsens? (3) What are their fears? and (4) What are the trade-offs they are willing to make and not willing to make? These discussions must be repeated over time, because people’s answers change. But people can and should insist that others know and respect their priorities.
Not everyone will feel ready to discuss such subjects, to be sure…read more.