by Nathan Goldstein, M.D. and Joanne Lynn, M.D.
Highly charged congressional and public debates over health care issues have touched on issues relevant to end-of-life care, such as Medicare reform and prescription drug coverage, but have failed to yield significant legislative action. The107th Congress considered essentially no fundamental policy changes to remedy problems associated with health care for people who have serious and eventually fatal illnesses. Twenty-two bills that touched on some aspect of end-of-life issues were introduced (go to URL to see a summary of the bills), yet none were passed. Of these, only HR 5139, "Living Well with Fatal Chronic Illness Act," would take a comprehensive approach to correcting problems in the field.
The lack of political will to deal with end-of-life issues is remarkable when one realizes that dying is essentially federally funded: 83% of Americans now die while covered by Medicare, and others are covered through other federal programs, such as Medicaid, veterans benefits, and the military. Almost by default, federal policy now shapes the places and programs in which most of us will die. The lack of focused, cohesive legislation reflects the disjointed agenda of the field and the way in which we now practice end-of-life care in the United States. The overwhelming message is simply that people who are living with progressive chronic illness at the end of life are not "seen" in the political process, and reforms to make care for this phase of life efficient and effective are not a central concern of advocates and legislators.
Why should political leaders care, and what should they be doing? Political leaders should care for two very important reasons - costs and quality. More than a quarter of Medicare funding pays for care rendered in the last year of a beneficiary's life--yet this care has been widely shown to be inadequate or ineffective. Reports of poor pain management, disregard for advance directives, and problems in nursing home care all point to the poor quality of much care. Having major expenditures for services that do not serve well is an opportunity for major reform.
The dynamics of the situation now act to ensure that progress will be slow. There is not even a way to convene discussion toward policy positions that many organizations could embrace. No existing meeting gathers most providers across hospice, nursing home, home care, PACE, and geriatrics. No existing clinical journal or organization attracts even a substantial proportion of the affected parties. Furthermore, self-interest pulls the parties in differing directions - provisions that improve funding for one provider type ordinarily are a threat to others. . Hospice programs are by far the most evident providers, and their policies have largely had to address questions of reimbursement and regulation that are essential to survival. Congress perceives this fragmentation as opposition to other reforms.
Regardless of the obstacles to activism, good care for the end of life simply is not likely to arise from better education and better behaviors by physicians and other practitioners. Medicare must pay better for continuity than for discontinuity, care must be organized to be reliable across time and setting, and failure to treat pain or make advance care plans has to be a disadvantage for providers. Patients must be able to rely upon quality services from onset of serious illness through to death.
How can that be achieved? The legislative agenda posted on ABCD's website offers a comprehensive overview of how to structure a care system that does well in caring for people near the end of life. Perhaps advocates and practitioners in this field could settle on key issues that could attract deliberate formation of coalitions. Such coalitions enable any field to speak with one voice on major issues--and one voice is more likely to attract congressional attention and garner action. Clinicians and patients' families need to see the relevance of informing their representatives. Only by taking an active role in shaping policy can we assure that all people receive the services and treatments needed to assure a good quality of life at the end-of life.
Nathan Goldstein, MD, was summer intern at the Center for Palliative Studies. He is participating in the Robert Wood Johnson Clinical Scholars Program, Yale University.
Congressman James Oberstar (D-MN) has introduced the "Living Well with Fatal Chronic Illness Act of 2002" (HR 5139), which includes many of the policy ideas ABCD has long championed. Oberstar explained that the legislation is designed to "ensure that people suffering from fatal chronic illnesses live out their lives in a dignified, comfortable, and meaningful way." Oberstar, whose mother and first wife both died from chronic diseases, noted that the legislation would also serve to "support and honor the invaluable work of caregivers." He explained that our current health care system is not geared to deal with the problems people face near the end-of-life nor those of their caregivers.
Congressman James Oberstar
Jean Oberstar, who serves on the ABCD Board of Directors, joined her husband to talk about the challenges she faced when caring for her first husband when he was dying. Mrs. Oberstar described that one of the most difficult problems she and her family faced during her late husband's illness was the profound lack of information they received about the dying process. She discussed the importance of the bill's proposed research initiatives, such as annual reports to Congress on the quality of life for people with fatal, chronic illness. "I wish this bill had been around when my husband was dying," she said.
For the past year, Oberstar and his staff have been working on the proposed law with information provided by ABCD. ABCD president Joanne Lynn also spoke at the briefing. She noted that the United States is the only Western country that does not in some way formally acknowledge and support the role of the caregiver in chronic illness; this bill will begin that process.
Susan Rogers, M.S., B.S.N.,C.H.P.N. talked about the challenges she faced while caring for her dying mother--despite her own experience as a hospice nurse and end-of-life advocate. She said, "When you are emotionally involved and your family member is so ill, you need some support - and this bill will give [you] that."
The Living Well Act features four key elements:
Cosponsors of the bill include Representative Martin Frost (D-TX), Representative Stephanie Tubbs Jones (D-OH), Representative Mike McNulty (D-NY), and Representative Eleanor Holmes Norton (D-DC).
For the full text of the bill, go to:
and type in the bill number. From this site, you can also e-mail your own congressional representatives and let them know what you think of the proposed legislation.--Nathan Goldstein, M.D.