APA Policy-Related Efforts to Promote End-of-Life Care
Psychosocial issues are a primary determinant of quality of life and of end-of-life decision-making. Research suggests physical pain and suffering can be exacerbated by the presence of clinical depression and, conversely, that it can be ameliorated by the effective treatment of depression and other psychological conditions. Thus, psychologists have a vital role to play in addressing the mental health aspects of the dying process. Although research provides clear links between psychosocial factors and end-of-life decisions, virtually all of the legislative, monetary, and research attention has focused on medical aspects of the dying experience and how to reduce physical suffering.
This report provides an overview of recent and ongoing initiatives undertaken by the American Psychological Association (APA) to enhance quality care near the end of life by addressing the critical psychosocial issues involved. These various activities focus on legislation, association policy development, and professional and public education.
Legislative Update -- 107th Congress
The primary legislation concerning end-of-life care under consideration by the 107th Congress is the "Conquering Pain Act," introduced by Senator Ron Wyden (D-OR) and Representative Darlene Hooley (D-OR) on June 13, 2001. This legislation, which was originally introduced in the 106th Congress, is a comprehensive measure to coordinate federal efforts to improve access to pain and symptom management. APA's Public Policy Office staff have collaborated with Senator Wyden's office to more fully integrate mental health professionals and psychosocial issues into this legislation.
The "Conquering Pain Act" would address a wide array of issues surrounding pain management. More specifically, it would:
Direct the federal Agency for Healthcare Research and Quality to develop a national Web site on the treatment of pain;
Establish National Family Support Networks in Pain and Symptom Management;
Direct the Medicare Payment Advisory Commission (MedPac) and the General Accounting Office (GAO) to study reimbursement barriers under Medicare and public and private health insurance providers;
Create an Advisory Committee on Pain and Symptom Management at the U.S. Department of Health and Human Services;
Commission a report on controlled substance regulation and the use of pain medications; and
Award grants for demonstration projects in end-of-life care and pain and symptom management.
Currently, the Senate version of the "Conquering Pain Act" (S. 1024) has three cosponsors and awaits action by the Senate Health, Education, Labor and Pensions Committee. The House version (H.R. 2156) has been jointly referred to the House Ways and Means Committee and the House Energy and Commerce Committee, and has four cosponsors.
The U.S. Senate Special Committee on Aging has also played an important role in highlighting issues related to the end of life. Since the Special Committee has oversight authority rather than legislative authority, its members hold forums and hearings to call attention to issues of national concern. For example, this past year the committee held hearings on elder abuse and Medicare, along with a series of hearings on long-term care.
APA's Public Policy Office and the Society for the Psychological Study of Social Issues (SPSSI) cosponsored a congressional briefing entitled, "Promoting Quality Care Near the End of Life: What Policymakers Need to Know," on July 18, 2001. The aim was to increase awareness about the importance of attending to psychosocial issues, as well as medical issues, near the end of life. Among the presenters were: James Werth, Jr. (University of Akron); Barry Rosenfeld, Ph.D. (Fordham University; and Patricia Grady, Ph.D., R.N., FAAN (Director of the National Institute of Nursing Research). For more information about the briefing visit Promoting Quality Care Near the End of Life.
Legislative History -- 106th Congress
The 106th Congress considered the "Pain Relief Promotion Act" (PRPA, H.R. 2260), which was introduced by Representative Henry Hyde (R-IL). The proposed legislation would have increased federal regulatory oversight of doctors who prescribe a specific class of pain medications, which would have likely resulted in a reduction in such prescriptions and inadequate pain management. Essentially, it would have allowed law enforcement agents to make a post-hoc determination of a physician's intent when prescribing a controlled substance (e.g., morphine) to a person who was in pain and suffering and who died at some point after having received the medication.
APA sent a letter to members of Congress outlining social science research findings about the psychological importance of appropriate pain medication and the potentially chilling effect of legislation like the PRPA on prescribing practices of physicians. Thanks to the concerted efforts of some senators, their staffs, and a grassroots coalition, this legislation was effectively stopped in its tracks.
Association Policy Development
In 1998, APA's Board of Directors and Council of Representatives commissioned an APA Working Group on Assisted Suicide and End-of-Life Decisions. In February 2001, APA's Board of Directors passed two resolutions drafted by the Working Group, one on End-of-Life Care and the other on Assisted Suicide. In addition, the group submitted a detailed report outlining strategies for increasing the visibility and role of psychology in end-of-life issues and assisted suicide. Specific recommendations included bringing together researchers, practitioners, educators, and policy-minded professionals to develop "state of the science and best practices" documents and to educate psychologists and the public.
During the 2000 APA Annual Convention, the Council of Representatives directed the Association to convene a three-year Ad Hoc Committee on End-of-Life Issues, which commenced April 2001. APA's Public Interest Policy staff are working closely with the working group to generate a cohesive end-of-life policy agenda.
As a means to educate psychologists about the end-of-life policy debate, SPSSI (Division 9 of APA) sponsored a two-hour symposium titled, "End-of-Life Decisions: Research, Practice, and Policy," at the APA annual convention in August 2001. Presenters included: James Werth, Jr., Ph.D. (University of Akron); Judith Gordon, Ph.D., (Chair of the APA Working Group on Assisted Suicide and End-of-Life Decisions); Catherine Cozzerelli, Ph.D. (SPSSI's APA 2001 Program Chair); Camille Preston, Ph.D., (2000-2001 SPSSI James Marshall Public Policy Scholar); and John Anderson, Ph.D., (Director of APA's Office on AIDS).
APA staff have also been involved in developing a conference to be sponsored by SPSSI on February 2-3, 2002, entitled" Attending to Psychosocial Issues Near the End of Life." The conference, to be held in Cleveland, Ohio, will focus on psychosocial issues in research, education, policy, and practice by considering the knowledge base and how to build upon it to improve care.