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When Patients Can't Be Cured: Mass. Med Schools Teaching More End-Of-Life Care

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On the second day of her geriatrics rotation, Jayme Mendelsohn buckles herself into the back seat of her professor’s blue minivan and rides south from the Boston University School of Medicine toward the house of a patient who cannot be cured.

As they drive through Roxbury, Dorchester and Mattapan, the professor, Dr. Megan Young, briefs Mendelsohn and another medical student about the elderly woman: She is 98, and diabetic, with increasing dementia.

She struggles to walk even a few steps, and can no longer make her way down the long cement stairway to her driveway. She has been housebound for nearly two years, and has a beloved dog who climbs up on her bed.

Young could have ordered tests, requiring hospital visits, to figure out why the patient had trouble walking. But that wasn't what the woman wanted. "Really, what she wants to do is stay home and work on her word puzzles and not go to doctors' appointments," Young tells the students.

In her first three years of medical school, Mendelsohn studied blood and bones, cancer and heart failure and diabetes, learning to fix the many ways a human body can falter and break. But now she and the other fourth-year student, Nirupama Vellanki, are learning how to be doctors in a new age in health care, as clinicians increasingly grapple with how medicine can help patients with incurable illnesses.

Last year, all four medical schools in Massachusetts agreed to work together to improve the way they teach students to care for seriously ill patients, especially near the end of life. This fall, the schools are gathering data on what students are currently learning about end-of-life care, and some are beginning to change the way they teach.

Students at UMass Medical School are learning to treat gravely ill patients in the school’s simulation lab, examining “patients” — paid actors — and talking to them and their “relatives” about their worsening illnesses.

At Harvard Medical School, professors also hope to add lessons about end-of-life wishes to the school’s simulated teaching sessions.

At BU, students are visiting patients with a hospice nurse for the first time this year. Fourth-year students like Mendelsohn and Vellanki will be questioned on the principles of palliative care — a medical specialty that seeks to improve seriously ill patients’ quality of life — that they’ve learned on rotations like Young’s, part of the effort to measure what they’re learning.

“We are taught to solve problems, fix them and move on,” Mendelsohn says. “But that is not the answer all the time.”

In the United States, the richest country in the world, many of us live poorly at the end of our lives. We don’t talk enough with our doctors about what we want — what’s important to us — if we become seriously ill and cannot be cured. For instance, although most of us say we want to die at home, only about one-fourth of us do. And doctors have traditionally been given little training in how to talk with ill patients about dying.

“There’s a lot to be proud of in modern medicine,” says Dr. Jennifer Reidy, chief of the palliative care division at UMass Memorial Medical Center and an associate professor at UMass Medical School. “But there is a bit of a steamroller effect sometimes in health care. There is a momentum towards doing more because we can, and we know how to do it.”

The new end-of-life training for medical students grew from the Massachusetts Coalition for Serious Illness Care, a group created in 2016. Surgeon and writer Atul Gawande, one of the coalition’s co-founders, asked Harris Berman, dean of the Tufts University School of Medicine, if he would bring together the state’s medical schools to improve training in palliative care.

The other deans agreed. All of the schools had some teaching on palliative care, but believed they could do better.

“If we’re not teaching it, if we’re not testing it, the message is that it’s not part of their job,” says Kristen Schaefer, an assistant professor of medicine at Harvard Medical School. Instead, the professors at the four medical schools want to teach students early on how to help gravely ill patients, she said, so they understand: “This is part of what it means to be a doctor.”

The schools won’t adopt the same curricula — the medical schools vary in size, budget and curriculum — but they will train students in five basic elements of palliative care. Patients do not have to be dying to receive palliative care, which can start anytime after diagnosis, including during treatment.

Learning how to talk to seriously ill patients and their families lies at the heart of the curriculum changes. Students will be taught how to discuss not only the science of their patients’ illnesses but also their patients’ wishes and values, and help them create plans for treatment.

“These are extremely challenging conversations,” says UMass Medical's Reidy. “They’re very emotional. There is a framework, a cognitive map, but ultimately it’s [like] jazz. It’s whatever’s in the moment.”

Students will be taught to anticipate strong emotions and how to talk to patients who are deeply sad or angry.

“Students are afraid that they’re going to say something wrong that could hurt patients and families,” says Schaefer, also a palliative care doctor at Dana-Farber Cancer Institute. “They feel worried that they’re going to cry themselves, that they’re not going to know what to do.”

The medical schools also hope to head off burnout, a serious problem for doctors, by teaching students to pay attention to their own emotions, and relaying coping strategies for working with dying patients.

'Create A Good Death'

Young’s patient, Ellen "Nellie" White, lives in Hyde Park with her daughter, Christine. Young, a home care physician at Boston Medical Center, began treating her a year ago.

“So Mom, this is the doctor I told you about coming today,” Christine says, opening the door to her mother’s bedroom, just off the kitchen. Young and the two students trail behind her.

Ellen White, born nearly 99 years ago in Ireland, sits on an easy chair with a green crocheted blanket across her legs. Her gray hair is cut short. Her daughter moves a book of word puzzles from her mother’s lap onto a table.

White squints up at her visitors. “Let me put on my glasses so I can see you,” she says.

“My name is Jayme,” Mendelsohn says loudly, so White can hear her. “I want to know how you’re feeling today.”

“I’m feeling fine, thank God,” White says. “I have no complaints.”

“Is anything bothering you?”

“Nope.”

Mendelsohn asks her a few more questions. She turns to her professor.

“Dr. Young, is there anything else you want us to specifically chat about today?” she asks.

Young asks her to check White’s blood pressure and listen to her heart and lungs.

White’s blood pressure is excellent. Mendelsohn takes off her watch.

“Let me just check your pulse,” she says.

She lays a finger across White’s wrist and gazes at her watch.

“Am I alive?” White asks.

Mendelsohn, counting, doesn’t answer. A few seconds later, she tells Young the pulse is a little more than 100 beats per minute.

“You’re alive!” Young tells White.

“That’s good to know,” she says.

Vellanki gives White a flu shot. The doctor and students leave the house. Afterward, the medical students say these visits help them learn different purposes of medicine.

“It can be really important for a medical student to have that moment where your job right now is not to write 15 different notes and to do all these different things and to solve their hypertension,” Mendelsohn says. “Your job is to talk to the patient and see what they need. … There are lots of times in medicine where you can't solve the problem because the problem is bigger than medicine.”

Vellanki says she’s learning that doctors can still help patients at the end of their lives.

“I think you can't solve the problem of dying but you can create a good death," she says. "And that's something that I don't remember being taught much in med school.”

Kathleen Burge is writing about end-of-life care as part of a Reporting Fellowship on Health Care Performance, sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund.

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