The duty to guide patients through the end-of-life decision-making process rests squarely upon primary care providers, writes one internist in The New England Journal of Medicine, maintaining that her colleagues should better support seriously ill patients earlier and throughout the course of disease.
Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health and Science University, is one of three physicians responding to the NEJM’s most recent “Clinical Decisions” case feature, detailing a woman undergoing treatment for metastatic breast cancer. However, her advance directive has not been reviewed in close to a decade.
The two other physicians who responded with their opinions – Dr. Anthony L. Back from the University of Washington, Fred Hutchinson Cancer Research Center in Seattle and Dr. Diane E. Meier from the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York City - claim an oncologist or palliative specialist should initiate the conversation about the patient’s goals. But Tolle says it is the primary care physician’s obligation to lead this difficult discussion and myriad others nationwide.
“Primary care has to get a sense that it should own this, and we should be providing this continuity of support,” she said.
Tolle developed the Physician Orders for Life-Sustaining Treatment (POLST) paradigm, designed to turn treatment wishes of seriously ill patients into actionable medical orders. While having a POLST form filled out is strongly associated with receiving desired levels of treatment, Tolle maintains that without widespread intervention of primary providers, patients will be less likely to ensure their end of life wishes are honored.
NEJM editors say they selected this case as part of a larger dialogue about end of life care, now reaching from hospital hallways to American living rooms as the PBS Frontline documentary, “Being Mortal,” which debuted Tuesday. The report is based on Dr. Atul Gawande’s best-selling book about the need for doctors to talk with patients about death.
“We’re trying to engender discussion,” said Jonathan Adler, NEJM clinical strategy editor and Massachusetts General Hospital emergency physician. “Not infrequently do I see patients for whom this discussion should have taken place but didn’t, and something catastrophic happens. People are rushing to make these decisions and different family members with different perspectives are talking about what they think the patient’s wishes were.”
Tolle points out that dialogue regarding goals of care earlier in an illness impacts patient satisfaction and choices. According to the Institute of Medicine’s recent Dying in America report, more than a quarter of adults have given little or no thought to end of life wishes. Fewer have communicated wishes in writing or through conversation. These statistics are ones that Tolle encourages her primary care colleagues to work to reverse.
Leaders within the American College of Physicians, an organization representing internists, agree. “Somebody has to step up,” said Robert Centor, Chair of the ACP Board of Regents. “If you’re a primary care physician, it’s incumbent on you to have the discussion with patients before and especially after they get sick about goals. If we don’t know a patient’s goals, they can’t get the best possible care.”
End of life planning, however, is not a billable Medicare service, and often takes much of what Centor calls the primary care physician’s most important commodity: time. “The system discourages us from spending enough time,” he said. “But we have a moral and ethical responsibility to give patients the time they deserve.”
Tolle applauds insurance programs that task nurse case managers with calling seriously ill policy holders to help decision-making. In place for close to a decade, Aetna’s Compassionate Care Program has resulted in an 86 percent reduction of patient days in intensive care.
“In the current state of medical practice, we are not seeing this type of engagement offered to people with advanced illness,” said Randall Krakauer, Aetna’s director for medical strategy. “They are not getting the advice, assistance and support that we think is most appropriate.”
Certainly, Krakauer acknowledged, the program has had huge cost-savings; however, he said, finances did not drive its implementation. “We were not at all clear when we began that it was going to save money,” he said.
Tolle said Aetna and other insurers are performing a service that should be done and hopes will be more routinely provided by primary physicians.“We should be able to offer more coordinated care from inside the health system than from the outside.”