Medical schools do a great job teaching students how to fix people. But they aren’t so good at preparing doctors for what Dr. Atul Gawande calls “the two big unfixables” — aging and dying.
A surgeon and writer, Gawande is a prominent voice among the small, but growing, chorus inside medicine arguing there must be a better way to help patients navigate the end of life.
He first wrote about the topic in a New Yorker article, Letting Go, then in the bestselling book Being Mortal and now in a Frontline documentary based on the book, airing on most PBS stations Tuesday, Feb. 10 (check your local listings).
In the documentary, Gawande takes us behind closed doors to witness intimate and heart-breaking end-of-life conversations among doctors, patients and their families. We see the search for an elusive sweet spot where doctors guide patients to just the right balance of toxic treatments (that studies say can actually shorten life) and hospice/palliative care (that can provide a better quality of life in whatever time remains).
What makes the show so compelling, and at times uncomfortable, is that it thrusts us into the most wrenching moments when a doctor must tell his or her patient the hardest of truths: Sometimes all the technology and brainpower that medicine has to offer can’t stop the inexorable march to death.
Why They Agreed To Participate
There’s a 34-year-old woman diagnosed with Stage 4 lung cancer during her eighth month of pregnancy who has a collapsed lung as she delivers her daughter and is so weakened by the chemo she can’t hold her newborn. We see a 46-year-old man with an aggressive, malignant brain tumor. And then there’s Gawande’s own father, also a surgeon, who had a pain in his shoulder that an MRI revealed to be a huge mass in the spinal cord. All face a grim outlook.
Convincing doctors, patients, families and the hospital bureaucracy to allow a television crew to witness a patient in the throes of a terminal illness was a daunting challenge.
“The ratio of failures to successes was pretty mighty. Probably like 50 to 1,” says Tom Jennings, who grew up with Gawande in Ohio and produced, directed and wrote the Frontline PBS special.
“When it did click for people, it’s because they saw there was going to be something there after they left. And it wasn’t reality television, but a serious attempt to understand this process. Once they decided to participate, they let their guard down.”
Humans And False Hope
In their zeal to give their terminal patients hope, some doctors can’t help themselves. Gawande catches himself telling the pregnant woman, facing both lung and thyroid cancer, “Maybe that experimental (lung) therapy will work for the thyroid cancer, too.”
In a conversation with her widower after her death, Gawande expresses regret and acknowledges: “I knew it was a complete lie. I just wanted something positive to say.”
Later in the broadcast, the roles are reversed. Gawande becomes listener as the oncologist for his father lays out eight or nine options to treat his dad, saying, “You really should think about taking the chemotherapy. Who knows? You could be playing tennis by the end of the summer.”
That absurd inducement to get Gawande’s father to begin his chemo regimen made Gawande mad. “My dad’s potentially within weeks of being paralyzed,” he says, but concedes “the oncologist was being totally human and was talking to my dad the way I had been talking to my patients for 10 years.”
Specialists In End-Of-Life
Enter the palliative care specialists, who by their skillset and vocabulary are helping doctors, patients and their families make sense of the complicated end-of-life conundrum.
We meet Dr. Kathy Selvaggi, who often asks terminal patients, “What is your understanding of what’s going on?”
“Oftentimes, what we say as physicians is not what the patient hears,” she notes.
That’s especially true for Norma, who is terminally ill. Her doctor hasn’t broached end-of-life issues in the two years he’s cared for her. When he finally says she has three to four months to live, Norma insists on finding the right medicine so she can take her granddaughter to Disney World.
The young doctor says he feels “very much a failure. And it’s hard. It’s just a fight mentality that perhaps goes back to training in med school and just the way we are wired. We’re not trained for that other mode.”
Selvaggi finally helped Norma understand that she is dying, but says these conversations shouldn’t wait until the last week of someone’s life. They need time to say goodbye.
Gawande is encouraged that palliative care physicians are becoming more central to the care of seriously ill patients, whether dying or not.
“But it is not cause for celebration,” Gawande writes in Being Mortal. “That will be warranted only when all clinicians apply such thinking to every person they touch.”
Doctors wouldn’t need to walk on eggshells in dealing with terminally ill patients and their families if they took the advice of advocacy groups like The Conversation Project, founded by Pulitzer Prize-winning columnist Ellen Goodman.
She argues we all have a responsibility to have these difficult conversations about our wishes and priorities at the end of life, ideally around the kitchen table long before a crisis overwhelms us.
As an adviser to the group, Gawande agrees. “It matters to people how their stories come to a close. Endings are important.”