Lynn Black’s mother-in-law, who had lupus and lung cancer, was rushed to a hospital intensive care unit last summer with shortness of breath. As she lay in bed, intubated and unresponsive, a parade of doctors told the family “all good news.”
A cardiologist reported the patient’s heart was fine. An oncologist announced that the substance infiltrating her lungs was not cancer. An infectious-disease doctor assured the family, “We’ve got her on the right antibiotic.”
With each doctor’s report, Black recalled, most of her family “felt this tremendous sense of relief.”
But Black, a doctor herself, knew the physicians were avoiding the truth: “She’s 100 percent dying.”
“It became my role,” Black said, to tell her family the difficult news that her mother-in-law, who was in her mid-80s, was not going to make it out of the hospital alive. Indeed, she died there within about a week.
The experience highlights a common problem in medicine, Black said: Doctors can be so focused on trying to fix each ailment that “no one is addressing the big picture.”
Now Black, along with hundreds of clinicians at Massachusetts General Hospital in Boston, is getting trained to talk to seriously ill patients about their goals, values—and prognoses—while there’s time.
At a recent training session, Jacobsen gave clinicians a laminated page with scripted language to help them along. When the participants role-played with professional actors, difficulties quickly emerged.
Dr. Thalia Krakower, a primary care physician, faced an emotional “patient” whose condition was on the decline.
“I can’t imagine it being any worse,” said the patient, hanging her head in tears.
“How long should we let them be silent and sad?” Krakower asked Jacobsen. “We always step in too soon.”
The scripted conversation is quite different from what doctors have been trained to do, Jacobsen acknowledged. It doesn’t aim to reach any decision, nor to fill out end-of-life paperwork.
“For the average doctor, this might feel like you’re not getting anything done,” she said. The goal is to step back from day-to-day problem-solving and talk about the patients’ understanding of their illness, their hopes and worries, and the trajectory of their disease.
At another moment during a role-play, Jacobsen stepped in when a doctor skipped over the section in the script where she was supposed to share prognostic information.
The topic is avoided for many reasons, Jacobsen later said: Clinicians’ schedules are crammed. They may not want to scare families with a timeline that turns out to be wrong. And they may not know what language to use, especially when the disease trajectory is uncertain.
When a doctor’s message moves abruptly from “everything’s great” to “she’s dying,” Jacobsen said, patients and their families don’t have enough time to adjust to the bad news.
To address that problem, Jacobsen’s team suggests language that helps clinicians discuss a prognosis without asserting certainty: “I worry the decline we have seen is going to continue,” or, “I worry something serious may happen in the next few months.”
After the training, Jacobsen’s team plans to follow up with doctors to make sure they are having the conversations with patients, starting with those deemed likely to die within three years.
Right now, she said, whether patients have these discussions depends too much on geography. “Our goal,” she said, “is for every patient with serious illness to have a meaningful conversation about what they care about, in every place.”
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