Cost, Survival Time, or Quality of Life: the Debate in End-of-Life Care

Jan Berger, MD, MJ, moderator of the panel discussion “Payer, Provider, and Patient Roles for Understanding the End-of-Life Care Equation,” opened the session asking the room filled with

oncology health professionals and insurers for a show of hands: How many had advance directives?

About half did. She then told the story of a curious family dinner at her parents’ home a dozen years earlier; her parents had invited an attorney, unknown to any of them, and instructed every family member to work with him to complete an advance directive before any could enjoy wine and the meal. “We made fun of it for years. None of us realized that within the following 10 years, twice, with my father and my brother, we would need those advance directives,” she said.

The panel was part of the November 13, 2014, session for Patient-Centered Oncology Care, held in Baltimore, hosted by The American Journal of Managed Care. Panelists included Amy Berman, BS, RN, of The John A. Hartford Foundation, who has received palliative care the past 4 years for her stage 4 inflammatory breast cancer; Bruce Feinberg, DO, of Cardinal Health Specialty Solutions; and Patti Forest, MD, MBA, senior medical director at Blue Cross Blue Shield of North Carolina. Each described a thicket of barriers—personal among patients and providers, institutional among payers, and cultural for all—that prevent the discussion of advance directives with cancer patients before it’s too late for them to control the course of their treatment.

Berman began her remarks by telling the story of a pin she wore that belonged to her grandmother, Shirley Dinnerstein, the plaintiff in a landmark 1978 Massachusetts case that determined

a person does not have to go to court to have his or her end-of-life wishes honored. “It is the precedent for the advanced directive,” Berman said. She attributed the fundamental resistance

to making advanced directives a normal part of healthcare planning, well before need, to a deep cultural reluctance to accept the inevitability of death. “Death is simply part of the life cycle, and we

live in a denial mode,” she said.

Feinberg said palliative care needs must become part of the curriculum for training doctors while, more broadly, a general shift in the culture must occur to accept advanced care planning as a

normal part of medicine. He described data that showed 75% adults 65 years and older are not “health literate.” Feinberg asked, “What is the education we can provide (patients), and can that

education be received as it needs to be received so the patient can make the decision? I struggle with how to convey the information to them because, in the end, if it becomes the doctor making

the decision, we have not accomplished the goal.”

Said Forrest, “The fear from the payer perspective is even bringing (palliative care) up, for fear the patient or provider will think we are just trying to save money. That has held back many

organizations in the past, but the time is ripe for the conversation around it.” She said one thing payers can do is to simply begin to pay doctors for having conversations with patients about palliative care. Berger, who said her family experience has made her “a passionate zealot” for advance directives, noted the allegation made during debate over the Affordable Care Act that compensating doctors for discussions of palliative and hospice care amounted to creating “death panels.” “We took a few steps backward then,” she said.

Forrest, summarizing the consensus of the panel, said the best rebuttal to those who denigrate discussion of palliative care is the research that supports it. “I would say ‘look at the evidence.’ Not only can quality of life be improved, but survival can be improved. It’s not about withholding care. The more we educate people, the better,” she said.