Patients with serious or advanced illnesses would be given more control over their care by language in health reform legislation passed by three House committees that would pay physicians, nurse practitioners, and other providers for counseling Medicare beneficiaries about advance planning for future care decisions.

That was the unanimous opinion expressed by three respected geriatricians at a August 20 conference intended to clarify several issues at the heart of the current health reform debate. The conference, Fact vs. Fiction: Key Issues in Health Reform, was sponsored by Health Affairs. The participants in the panel dealing with end of life issues were Christine Cassel, MD, President, American Board of Internal Medicine; Diane E. Meier, MD, Director, Center to Advance Palliative Care, Mount Sinai School of Medicine; and Jerald Winakur, MD, of the Center for Medical Humanities and Ethics at the University of Texas Health Science Center and author of “What Are We Going To Do With Dad?,” a Health Affairs 2005 Narrative Matters essay.

Section 1233 of the House “tri-committee” bill, HR 3200, contains a provision that would allow Medicare to pay for a voluntary “advance care planning consultation” to take place every five years between a given Medicare beneficiary and his or her physician, nurse practitioner, or physician assistant. The language of the bill says that the consultation will include a discussion of “key questions and considerations, important steps, and suggested people to talk to” and an explanation of “advance directives, including living wills and durable powers of attorney, and their uses.”

The health care provider must also explain “the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services” that Medicare covers. It does not say that patients must choose a certain option or limit their care in any way. If Medicare beneficiaries decide to prepare “an order regarding life sustaining treatment,” the provision says they can request full treatment or certain kinds of treatment.

This clear language has not stopped some opponents of reform efforts, such as Alaska Governor Sarah Palin, from arguing that the legislation would result in government “death panels” that would determine who lived and who died. Cassel refuted these charges. It is a “really unfortunate mischaracterization that somebody else is going to make decisions for you. In fact, advance directives are about exactly the opposite of that. Advance directives are about you making your own decisions, and about the people who take care of you being able to know about what those decisions are,” she said.

Ironically, it is the status quo, in which most seniors lack advance directives, that results in the wishes of patients being trampled at the end of their lives, Cassel added. “People want pain and symptom control, they want to avoid a painful prolongation of the dying process … they want a sense of control and dignity. They are concerned about burdens on the family, both emotional and financial burdens,” she said. But what patients actually experience is something very different. For example, one study found that half of the patients studied had moderate to severe pain more than half the time in their last three days of life. 38 percent of those who died spent more than 10 days at the end of life in the ICU in a coma or on a ventilator. A third of the families lost most or all of their savings in that last illness.

Meier contrasted the experiences of two of her patients to illustrate the importance of advance directives. The first patient, Mrs. G, was an 82-year-old nursing home resident with moderate dementia and recurrent pneumonia who was hospitalized four times during one year. She had no advance directive or health care proxy decisionmaker. During her hospitalizations, Mrs. G suffered incalculable pain from aggressive treatments that included very difficult twice daily dressing changes for her decubitus ulcers, which extended down to bone and muscle.

The second patient, Judy F. was diagnosed at age 59 with metastatic lung cancer and given a prognosis of six to 12 months to live. Judy F. had the benefit of advance care planning from the point of diagnosis. Her goals were to live as well as possible for as long as possible- quality of life was her greatest concern. Despite her prognosis, she lived six more years, receiving excellent care from an oncologist at NYU. About 14 months before her death, she sought out Meier and began receiving palliative care simultaneously with chemotherapy from her oncologist. It wasn’t until the last three weeks of her life, when it was clear that the tumor was progressing despite treatment, that Judy F. decided to stop the chemo and begin hospice. She died peacefully at home surrounded by her family.

Meier drew several implications from these two cases. As Judy F.’s case shows, she said, “We cannot save money by cutting off care for a population of patients identified as at the ‘end’ of life, because we only know that in retrospect.”  Meier added that the two cases also show the importance of not waiting until the “end of life” to begin advance care planning or to provide palliative care. Judy’s F.’s case illustrates a “conceptual shift for palliative care, where patients receive both life prolonging treatment and palliative care throughout the course of a serious advanced illness until the point that life prolonging care is no longer beneficial, at which time they may choose to receive hospice,” she said.

Increasing the Ranks Of Geriatricians and Geriatric Nurses

Cassel, Meier, and Winakur agreed on the desirability of a Medicare benefit for advance care planning, but they also agreed that workforce measures to increase the number of geriatricians and palliative medicine experts were of even greater importance. Winakur provided the grim statistics on the mismatch between the increasing number of elderly Americans and the declining number of physicians and other health care providers equipped to care for them.
“Soon 20 percent of America’s populace will be over 65. By 2050 there will be 18 million people over 85. One-half of them will likely have some form of dementia. Only 20 percent will be fully mobile,” Winakur observed. “At the same time as its most vulnerable population is growing, the numbers of physicians and trained nurses caring for the elderly and people with serious chronic illness is shrinking. The number of primary care doctors being trained is half of what it was just a few years ago and only 2% of graduating U.S. medical students plan to enter a primary care career. … Only 300 or so geriatricians are trained each year — fewer than those entering retirement. Currently, there is but one geriatrician for every 8,000 people over age 65 in America.”  Similarly, fewer than 100 palliative medicine specialists are trained each year, one for every 140,000 patients with advanced and complex illness.
Meier offered proposals to beef up the geriatric and palliative care workforce, such as forgiving medical or nursing education loans for people who go into geriatrics or palliative care. In addition, policy change is needed that would provide Medicare graduate medical education money to support palliative medicine fellowship training, which now are entirely supported by philanthropy – “a pretty thin reed for public policy.” The Senate Finance Committee is considering these measures, Meier said, “and if they don’t survive this time, we’ll keep working on getting them in next time.”

Winakur also spoke of the need to overhaul Medicare’s “perverse payment incentives that have undermined primary care medicine and promoted specialization and technology over face- to-face interactions between doctors and patients and families.” He noted that “an ear, nose and throat doctor gets more money for cleaning the wax out of my patient’s ears — because that’s a surgical procedure — than I get when a 90-year-old woman comes into me and tells me she’s had a little spell, and I have to use my time and my diagnostic skills to try to figure out ‘Is this serious?’ Does she need to go to the hospital? Do I need to do some tests in the office?”  According to Winakur, “We don’t need more money in the system, but we need to reallocate what’s already in the system.”

Moderating the panel, Health Affairs Editor-in-Chief Susan Dentzer noted that key legislators have been backing away from including a Medicare advance care planning benefit in health reform legislation, and Cassel said that keeping the provision was not worth risking the overall success of health reform. Meier suggested that, despite the current controversy over the proposed benefit, the ongoing debate “will turn out to be positive, as the Terry Schiavo debacle turned out to be positive. …  We’ve begun to turn the tide on the lies about death panels. That’s all they are – lies – and we need to keep saying that.”