Palliative care specialists fill void with focus on end-of-life care
When Gregg Robbins-Welty was 12 years old, his grandmother died alone and in pain in the sterile environment of a hospital.
His grandfather died at home six months later, surrounded by friends and attended by palliative care specialists.
The difference in their deaths spurred Robbins-Welty, 23, to pursue work in palliative medicine, which focuses on patients with serious and terminal illnesses. He wants to help improve how patients experience the end of life, an area of medicine that historically has not been a priority.
“The way that we're taught to do medicine is to do more, do more, do more ... The reason palliative care is so important is that that may not be what the patient wants. It may not be what is necessary,” said Robbins-Welty, a second-year student at the University of Pittsburgh School of Medicine. He was part of a group of about four dozen people training or working in health care — mostly graduate students — who recently completed a Jewish Healthcare Foundation fellowship on death and dying. The program coincides with a growing focus on end-of-life treatment, including a January policy change by the Centers for Medicare & Medicaid Services to reimburse doctors for helping patients plan for death.
A 2015 Kaiser Family Foundation poll found that 89 percent of people say doctors should discuss end-of-life care issues with patients, while only about 17 percent say they have had those talks with their doctors or other health care workers.
“Often, what doctors bring to the table is they're trained to provide medical facts, not to provide emotional support in these conversations,” said Dr. Winnie Teuteberg, medical director of community supportive services for UPMC and an associate professor of medicine at Pitt.
Palliative care specialists at UPMC help patients digest bad news and plan for the end of life, Teuteberg said. In 2014, they started training doctors to have the conversations themselves, she said. Meanwhile, Pitt's medical school has been expanding palliative training, including a program in which students talk with terminally ill patients about their experiences.
“Often, patients who are upset don't say that they are upset. ... Doctors who aren't trained in conversation skills like to give a lot of information without pausing to acknowledge these are emotionally charged conversations,” she said. “We've learned that if you pause, give space to experience sadness, they can go along with the conversation.”
The specialists — including doctors, nurses and social workers — help patients plan where they want to die, whom they want to make their treatment decisions if they become incapacitated, and whether they want things like feeding tubes and blood transfusions to extend their lives, Teuteberg said.
Teuteberg and others in the medical field in Pittsburgh said there still is room to improve end-of-life discussions and treatment.
Robbins-Welty said his grandparents helped raise him in New York before their deaths. When his grandmother was in the hospital, his grandfather struggled to get basic information about her treatment and her options, he said. She died of pneumonia; his grandfather died of cancer.
“I just remember how I felt after my grandmother died, and it was sort of like abandoned by the health care system, like not knowing what was going on or what had happened,” he recalled. “And how much better I felt when I had people there that did know what was going on and that were willing to talk to me.”
The Jewish Healthcare Foundation started training doctors in end-of-life care in 2007 after repeatedly hearing the frustration of people whose relatives had died in hospitals, said Nancy Zionts, the foundation's chief operating officer and chief program officer.
“Too often, it just happened as opposed to them being part of the process,” Zionts said. “Our belief was that part of the reason that disconnect was happening was that neither side was adequately prepared to handle that conversation of serious illness or death and dying. That, to us, was something that was sad and could be fixed.”
The foundation started the program for graduate students last year, she said. The second fellowship, which included medical students along with nurses, occupational therapists, social workers, genetic counselors, pharmacists and ethicists, ended April 4.
Medicare in January began reimbursing doctors $86 for 16- to 30-minute end-of-life conversations and an additional $75 if the talks go longer, Teuteberg said. Commercial insurers have largely followed suit, she said. Advocates for better end-of-life care hope the reimbursement will encourage more doctors to make time for the conversations.
UPMC has about 15 palliative care specialists at its academic medical centers in Oakland and 10 to 15 in community centers, Teuteberg said. More doctors are scheduling the conversations in outpatient settings and during annual wellness visits, and nurse practitioners and social workers are conducting the talks at hospices and in patients' homes, she said.
At Jefferson Hospital, an Allegheny Health Network facility in Jefferson Hills, two doctors trained in palliative care often deliver the news that a patient's condition is terminal, said Dr. Uzma Khan, the hospital's medical director of palliative patient and family support services.
Nurses in an ambassador program also are trained in palliative care principles, Khan said.
“What palliative care does is what's missing in medicine,” she said. “We are so pressed for time that we are not taking the time to help people; we are not taking the time to teach people what to expect.”
Khan said she is working to change the culture at the hospital to one that is more comfortable with planning for the end of life.
“We have to frame it like we are talking about life, and how you're going to live it to the very end,” she said.
Wes Venteicher is a Tribune-Review staff writer. Reach him at 412-380-5676 or firstname.lastname@example.org.