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Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

Which Doctors Should “Own” End Of Life Planning?

This piece was first published in Reuters Health. President Randi Belisomo is a contributor.
Courtesy WikiMedia Commons
Courtesy WikiMedia Commons

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.”

Susan Tolle via YouTube
Susan Tolle via YouTube

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.”

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2 Thoughts on “Which Doctors Should “Own” End Of Life Planning?”

  1. The “Clinical Decisions” piece in NEJM presents a great story for teaching, and a trio of well thought out responses from three prominent and influential palliative care doctors in our field.

    What’s missing from the list of approaches?

    People talking to people and sorting out their general preferences and philosophical sense of priorities in living in the 99.9% of time when they aren’t talking to a provider and they are not sick. People talking to people in the 94% of time when they aren’t talking to a provider when they are sick.

    The questions that underlie choices in the heat of a medical crisis, are the most powerful and orienting questions that underlie very choices we make in life…from what to have for breakfast to what to do for a living.

    “What matters to me?”

    “Where do I find joy?”

    “What does suffering mean?”

    “Could I live with less…materially, physically, mentally?”

    “When does pain become suffering?”


    As doctors and provider of medical care, trained in the minutiae of human physiology, we are an arrogant lot to say the least. If we think our training and position gives us the upper hand in these profound topics, we are the victims of our own hubris and bring barely anything to the vulnerable souls that come our way. The conversation belongs to them…or us, when we climb down from our vaulted hubris…and join people as people ourselves.

    That being said, we certainly do have a role; all of us and any of us that commit to peeling back the crap and projection of the system and institutions in which we function and identify with. The trick isn’t to make better doctors and providers out of people. The trick is to make better and stronger people out of anyone with the courage to step into the lives of vulnerable souls to serve them and to soothe them.

    Michael D. Fratkin,MD

  2. While I certainly appreciated the main article and the discussions representing different medical specialties addressing end-of-life planning, I particularly resonated with the reply posted by Dr. Fratkin.

    Having spent many years as a hospice chaplain, I am keenly aware of the physicians who assume they live in a different sphere from their patients versus those who realize they are fellow travelers in the tender, sometimes troubling journey of life.

    Thank goodness a variety of medical providers want to talk with their patients about their choices, but why not take the hospice team approach to the question of who should have “the conversation”? As members of the team, we were all prepared to have a variety of life and death conversations with patients and families. Rather than a contest mentality, we remained open to the right time/right connection/right topic principle. As hospice professionals we opened doors to a variety of discussions involving choices and decisions.

    Unless a crisis situation dictated otherwise, patients and families ultimately chose topic, team member and time for these conversations. I believe that is where “ownership” belongs.

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