Palliative care is an important and emerging issue for health care providers, educators, and the general public. As medical advances increase life expectancy, more and more people suffer from chronic and progressively disabling diseases that require treatment for depression and assistance with pain and symptom management. Some recent studies have pointed to significant problems within the health care system that preclude the achievement of the best possible quality of life for patients and their families. Areas identified for improvement include education and training for health care providers, improved pain and symptom management, and access to appropriate and quality health care services. The Assisted Suicide Funding Restriction Act of 1997 contains a provision designed to focus federal funding on research, training, and demonstration projects that would address these specific problem areas. The act authorizes funding in a number of palliative care topics (see table 1) and directs the Secretary of HHS to emphasize palliative medicine among its research and funding priorities under section 781. Section 781 is within title VII of the Public Health Service Act, which authorizes numerous programs for health professions education and training. Section 781 was first funded in 1993 to conduct health professions education research in four broad topic areas related to (1) educational indebtedness, (2) effect of programs for minority and disadvantaged individuals, (3) extent of investigations and disciplinary actions by state licensing authorities, and (4) primary care. The Bureau of Health Professions within the Health Resources and Services Administration (HRSA) is the HHS agency responsible for administering grants funded under section 781 of title VII. The extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. The first phase is undergraduate medical education--or medical school--where students typically receive 2 years of classroom, or didactic, instruction followed by 2 years of clinical training. The United States has 144 accredited medical schools. The second phase is graduate medical education--or residency training--where residents receive 3 to 8 years of clinical training in a medical specialty. The United States has over 7,700 accredited residency programs. The third phase is continuing medical education, which provides physicians who are already practicing medicine with the education and training necessary to maintain or learn new skills. Continuing medical education courses are provided primarily by medical schools and state medical societies, but such courses are also provided by medical associations and consultants. Throughout these three phases, a variety of formal accreditation and certification processes are used to test student competency and to judge the quality of instruction and training. Our review at medical schools showed mixed amounts of attention given to palliative care issues. Accrediting organizations have generally steered away from standards requiring instruction in topics as specific as pain management, preferring to leave such matters to the discretion of the faculty at each school. To determine the extent to which the schools addressed these topics, we surveyed all U.S. medical schools on seven palliative care topics. For each of the seven palliative care topics we asked about, at least half of the 125 U.S. medical schools that responded to our survey said they had some degree of required instruction. (See fig. 1.) Instruction in palliative care for chronic illness was required by the fewest number of schools (56 percent). For the remaining topics, the percentage of schools requiring the topic was higher; for example, over three-quarters required instruction in the topic of pain management for the terminally or chronically ill, and 94 percent required instruction in depression identification and treatment. Our survey responses showed that some schools have added these topics fairly recently. For example, 24 percent of schools reported adding pain management as a required subject within the last 3 years. (For a more detailed summary of our medical school survey results, see app. II.) Many schools reported a need to change palliative care instruction, particularly in the area of clinical training. Overall, 30 percent of schools reported a need to change their classroom curriculum in palliative care, and close to 50 percent reported wanting to provide students with more hands-on training experience in diagnosing and treating patients with pain due to chronic or terminal illness. Evaluation processes vary in the extent to which they measure students' knowledge of palliative care issues. (See fig. 2.) The percentage of medical schools that reported testing competency in the topics we surveyed ranged from 36 percent for interdisciplinary health care for end of life to 72 percent for identifying and treating depression. Many medical schools also rely heavily on national examinations--the U.S. Medical Licensing Examination or the National Board of Osteopathic Medical Examiners' exam--to evaluate student knowledge. A study is currently under way to examine the degree to which the U.S. Medical Licensing Examination tests student knowledge in end-of-life care issues and to develop a method to evaluate student performance on these test questions in the future. Our review also indicated that attention to palliative care issues in residency programs varied as well. Accrediting bodies at the graduate level generally require some specific areas of instruction, although, as in medical schools, the primary responsibility for curriculum and training content is assumed by the program director and faculty. Required topics of instruction, such as domestic violence, vary by specialty, and few specialties have requirements including specific palliative care topics.Because of the large number of accredited residency programs in the United States, we did not administer a survey similar to the one we developed for medical schools. We relied on existing surveys done by professional associations that asked residency programs to report whether the subjects of end-of-life care and suicide were included in their training programs. The American Medical Association's (AMA) 1996 survey showed that nearly half of the nation's 7,787 residency programs include instruction in end-of-life care and over a third teach issues related to suicide. While historical data on the subject of suicide prevention are not available, AMA's data show greater numbers of residency programs now offer instruction in end-of-life care than in the past. In 1996, nearly 50 percent of residency programs taught end-of-life care, compared with 38 percent in 1994. To some extent, the percentage of residency programs that taught palliative care subjects corresponded to the degree to which these skills might be needed in the specialty area covered by the program. For example, 93 percent of family practice residency programs in the subspecialty of geriatrics reported teaching end-of-life care, while only 10 percent of pathology residency programs in the subspecialty of pediatric pathology reported teaching the subject. However, the percentage of programs that reported teaching end-of-life care was surprising for some specialties for which the need for physicians skilled in end-of-life care seems more evident. For example, nearly half of internal medicine residency programs in the subspecialty of oncology reported not teaching end-of-life care, although physicians treating patients with cancer often deal with terminal patients. (See app. III for a detailed summary of AMA's 1996 residency program survey results.) The knowledge and skill of resident physicians is evaluated by each residency program's internal evaluations and national examinations. These examinations include the U.S. Medical Licensing Examination as well as examinations some physicians take to become certified in a medical specialty. The extent to which board examinations include questions related to palliative care has not been quantified, and student performance on palliative care questions that may be included on the exams has not been evaluated. The availability of continuing medical education courses that focus on palliative care issues for terminally or chronically ill people appears limited. Many states and medical associations require physicians to continue their medical education to maintain their medical license or membership benefits, but they generally do not require courses on specific topics such as palliative care. Because of the number and variety of continuing medical education providers, information on the existence of continuing medical education courses dedicated to palliative care issues was not readily available. However, we queried the AMA's database of over 2,000 accredited continuing medical education activities and found that few specifically addressed palliative care. In addition, an official with the American Osteopathic Association said there are few continuing medical education courses related to palliative care for doctors of osteopathy. An example of a course that specifically addresses palliative care issues is a self-study program developed by the American Academy of Hospice and Palliative Medicine, which covers a variety of palliative care topics. Recognizing a need for more courses in this area, private efforts are under way to develop more conferences on end-of-life care issues as well as promote those that already exist. The fiscal year 1998 conference committee report on HHS appropriations specifies $452,000 for section 781. Officials in HRSA plan to use $150,000 of this amount for seven medical education projects, including one project on palliative care. All seven projects will be conducted by one medical education research center. HRSA plans to provide the funds for the seven projects in May 1998. Because budgets are not maintained separately for each project, HRSA and medical education research center officials were not able to specify the amount of funding dedicated for the palliative care project. The project will assess current medical school courses on death and dying to determine if they meet recommended methods for teaching end-of-life care. The remaining $302,000 will be used to support projects focused on increasing the knowledge about the needs and resources of the nation's health professions. Information obtained through these projects will be used to assess the effectiveness of current workforce programs. HRSA officials said they consider this research as higher in priority. In addition, the officials said that due to the importance of health workforce research, future funding of palliative care projects in medical education is uncertain. HRSA did not include palliative care research for medical education in its fiscal year 1999 budget justification. HRSA officials do not plan to fund any of the other types of palliative care topics authorized under the Assisted Suicide Funding Restriction Act. They said these other initiatives, such as demonstration projects to reduce restrictions on access to hospice programs, are not related to the traditional focus of title VII to support health professions education and training. Projects of these types are generally administered by HHS agencies other than HRSA. For example, the act authorizes research funding under section 781 for advancing the biomedical knowledge of pain management, which has been primarily the domain of the National Institutes of Health (NIH). The act also authorizes research under section 781 for using specific outcome measures to assess the quality of care for patients with disabilities or terminal or chronic illness; measuring outcomes and quality of care is an area of expertise for HHS's Agency for Health Care Policy and Research (AHCPR). Several HHS agencies fund projects related to palliative care under their own program authority. Some of these projects directly address the types of research, training, and demonstration projects authorized in the Assisted Suicide Funding Restriction Act, including the following: Research authorized by the act includes projects to advance biomedical knowledge of pain management and assess the quality of care for patients with terminal illness by measuring and reporting specific outcomes. NIH--the federal government's primary focal point for biomedical research--estimates that in fiscal year 1997, it spent over $82 million on various types of pain management research. NIH also established a pain research consortium to enhance and coordinate pain research across the various components of NIH. NIH's National Institute of Mental Health has also begun suicide prevention research projects. HHS' Assistant Secretary for Planning and Evaluation is providing $174,000 to evaluate the quality of hospice care in nursing homes--a topic directly related to this provision. Training authorized by the act includes projects to teach physicians about palliative care issues. HRSA's HIV/AIDS Bureau is in the process of completing an evaluation of a Canadian instruction module on palliative care and plans to make recommendations on how the module should be modified for use in the United States. AHCPR, which funds projects to improve the effectiveness of health care services, issued guidance in 1994 on management of cancer pain that included discussions and recommendations on palliative therapies used to relieve or ease pain. Demonstrations authorized by the act include projects to fund home health care services, community living arrangements, and attendant care services. The Health Care Financing Administration, which is responsible for administering Medicare and Medicaid, has supported these types of demonstration projects. For example, states can obtain waivers to use Medicaid funds for home health care services, community living arrangements, and attendant care services, which are not normally covered by Medicaid but that are considered necessary to care for and improve the quality of life for medically fragile populations. Other federal projects do not have an explicit objective related to palliative care and suicide prevention but provide opportunity for benefit in this area. For example, AHCPR has many research initiatives that could address improving palliative care for patient populations most prone to suicide. AHCPR and the American Association of Health Plans will provide $7 million over 3 years to assess the quality of care for patients with chronic diseases under varying features of managed care organizations. In addition, AHCPR has initiatives to develop and improve quality of care measures for health care providers and health service delivery, which could include outcomes for palliative care in the future. AHCPR's Medical Treatment Effectiveness Program--which has traditionally focused on identifying and promoting the most effective treatments to prevent, diagnose, or treat diseases such as cancer, AIDS, or cardiovascular disease--could also incorporate palliative care for these and other terminal or chronic illnesses in future research projects. Private foundations, nonprofit organizations, and professional associations have recognized palliative care as an emerging and important area of medicine and research. As a result, a variety of private initiatives are under way that cover many of the areas of research, training, and demonstration projects described in the act. The two most comprehensive initiatives we identified are Last Acts, funded by the Robert Wood Johnson Foundation, and Project on Death in America, sponsored by the Open Society, a foundation created by philanthropist George Soros. Last Acts aims to raise awareness of the need to improve the care of persons who are dying, improve communication and decisionmaking related to end-of-life care, and change the way health care and health care institutions approach care for dying people. Last Acts has task forces and committees to pursue a variety of issues, including improving provider education on palliative care and developing outcomes and evaluation tools for palliative care. Project on Death in America is a $30 million campaign to transform the culture of dying by supporting projects and fostering change in the provision of end-of-life care, public and professional education, and public policy. It conducts its own projects and provides grants to other individuals and institutions. Its major project is a $7 million faculty scholars program for innovative clinical care, research, and educational programs to improve the care of the dying. Private entities also provide funding for a variety of other projects in palliative care--some with a specific focus in physician education or improving access and quality to palliative care. (See table 2). We provided a draft of this report to the Secretary of HHS for review and comment. Although we did not receive comments in time for publication, HRSA and NIH officials informed us that they generally concurred with the report's findings. Additionally, NIH officials stated that a conscious effort is needed to change the curricula of health professions education schools to sensitize providers about the needs of the chronically ill and disabled patients. In particular, they emphasized that attention needs to be given to pain management, depression, and symptom management. In addition, officials from HRSA, NIH, AHCPR, and the Office of Public Health and Science provided technical comments, which we incorporated as appropriate. We are sending copies of this report to the Secretary of HHS, interested congressional committees, and other interested parties. We will also make copies available to others on request. The information contained in this report was developed by Frank Pasquier, Assistant Director; Timothy S. Bushfield; and Lacinda Baumgartner. Please contact me at (202) 512-6543 or Frank Pasquier at (206) 287-4861 if you or your staff have any questions. We discussed the extent that palliative care issues were taught and tested in medical schools, residency programs, and continuing medical education with representatives from cognizant professional associations including the AMA, the American Osteopathic Association, the AAMC, the American Association of Colleges of Osteopathic Medicine; faculty from various educational institutions; representatives from entities administering national examinations necessary for medical licensure and board certification, such as the National Board of Medical Examiners and the American Board of Internal Medicine; representatives from accrediting bodies for medical schools, residency programs, and continuing education, including the Liaison Committee for Medical Education, the Accreditation Council for Graduate Medical Education, and the Accreditation Council for Continuing Medical Education; and recognized experts in the field of palliative medicine. To gather more specific information about the extent to which the palliative care subjects addressed in the Assisted Suicide Funding Restriction Act were taught in medical schools, we developed and administered a survey to all accredited U.S. allopathic and osteopathic medical schools regarding their curriculum, training, and testing of student knowledge in pain management, depression identification and treatment, and palliative care. After reviewing literature on the subject and consulting with experts, we selected seven topics to capture the range of possible instruction. Our topics included both the broad topic of palliative care and more specific topics, such as pain management. While the specific topics are components of palliative care, they do not individually encompass the broader concept of palliative care. For this reason, we asked the schools to report on each topic separately. In conducting our survey of medical schools, we used mailing lists provided by AAMC and the American Association of Colleges of Osteopathic Medicine that they use to conduct annual medical school curriculum surveys. Our response rate was 85 percent. Results are self-reported, and we did not verify or standardize responses among schools. A summary of the survey results is shown in appendix II. Due to the large number of residency programs and our reporting time frames to the Congress, we did not conduct a similar survey of these programs. However, the AMA provided us with related information reported in its annual survey of 7,787 residency programs accredited by the Accreditation Council for Graduate Medical Education and combined specialty residency programs. The survey covers allopathic programs only. Residency programs responding to this survey in 1996 reported whether the general subjects of end-of-life care and suicide were included in their curricula. More detailed data on subjects specifically related to pain management, depression identification and treatment, and palliative care were not available. AMA survey data did not include information on whether residency programs tested student competency in particular subject areas. We discussed HHS' plans for awarding palliative care grants under section 781 with representatives responsible for administering these grants in the HRSA's Bureau of Health Professions. We also reviewed HRSA's plans for funding section 781 projects in HRSA's 1998 and 1999 Justification of Estimates for Appropriations Committees. We discussed other federal and private palliative care research and education initiatives funded outside section 781 with HHS agencies and private entities involved in similar palliative care activities. HHS agencies or offices we spoke with included AHCPR, NIH, the Health Care Financing Administration, and the Office of the Assistant Secretary for Planning and Evaluation. Private entities we obtained information from regarding ongoing palliative care projects included foundations, such as the Robert Wood Johnson Foundation; nonprofit organizations, such as the Open Society, the United Hospital Fund of New York, and The George Washington University's Center to Improve Care of the Dying; and professional associations, including AMA's Ethics Institute, the American Academy of Hospice and Palliative Medicine, and the American Board of Hospice and Palliative Medicine. The federal and private palliative care projects we identified are examples of the various types of projects being conducted; they are not intended to be a comprehensive listing of palliative care projects. We conducted a survey of all medical schools--both allopathic and osteopathic--in the United States. We asked each school about the extent to which their didactic--or classroom--instruction and clinical training addressed palliative care topics. We received responses from 125--or 85 percent--of these schools. Tables II.1 through II.3 summarize the results of this survey. The AMA surveyed 7,787 residency programs in the United States in 1996. We obtained data on the number of programs that included end-of-life care and suicide prevention topics. Table III.1: U.S. Residency Programs Teaching End-of-Life Care and Suicide Prevention Endocrinology, diabetes, and metabolism Pulmonary disease and critical care medicine (continued) Blood banking and transfusion medicine (continued) Internal medicine and emergency medicine Internal medicine, physical medicine, and rehabilitation Internal medicine and preventive medicine Neurology, diagnostic radiology, and neuroradiology Neurology, physical medicine, and rehabilitation Pediatrics and physical medicine and rehabilitation Pediatrics and child and adolescent psychiatry (continued) Subspecialties are indented. The first copy of each GAO report and testimony is free. 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Summary:
Pursuant to a legislative requirement, GAO reported on the extent to which projects under section 781 of the Public Health Service Act have furthered the knowledge and practice of palliative care, particularly with regard to curricula offered and used in medical schools. GAO's preliminary work showed that no fiscal year (FY) 1998 funding for section 781 projects would be awarded by its April 30, 1998 reporting date, so GAO focused on determining: (1) the extent to which the physician education and training process currently teaches and tests student competency in palliative care issues; (2) the Department of Health and Human Services' (HHS) plans for funding palliative care projects under section 781; and (3) other federal and private palliative care research and education initiatives. GAO noted that: (1) physicians receive varying amounts of instruction in palliative care topics as they progress through 4 years of medical school and 3 to 8 years of subsequent specialized training in a residence program; (2) each of the seven palliative care areas in GAO's survey was required by 56 percent or more of the 125 medical schools responding to its survey; (3) similarly, about half of the 7,787 specialty and subspecialty residency programs educated students in end-of-life care; (4) GAO's survey showed that many medical schools are interested in providing additional instruction and training in palliative care; (5) about one-third of the schools reported a need to change their curriculum for addressing palliative care for the chronically and terminally ill; (6) close to half reported a need to include more clinical training in managing pain and depression for these patient populations; (7) HHS officials plan to use $150,000 of the $452,000 specified for section 781 in the FY 1998 appropriations conference report to support seven medical education research projects, including one palliative care project; (8) officials from HHS and the medical education research center receiving these funds were not able to specify the amount being spent on the palliative care project because separate budgets are not developed for each project; (9) of the remaining section 781 funds, all $302,000 will be used to support research for improving the distribution and diversity of the health care workforce; (10) because of the higher priority that HHS has assigned to this other research, officials do not plan to use any funds for palliative care research, training, or demonstration projects in 1999; (11) nevertheless, a substantial amount of research related to palliative care is being funded in ways other than through section 781; (12) over the last few years, HHS and private entities have invested tens of millions of dollars into projects similar to those specified in the Assisted Suicide Funding Restriction Act; (13) some HHS agencies have more general projects, not specified in the act, that could also benefit palliative care in the areas of increasing health care access, improving quality of care, and advancing biomedical research; and (14) private foundations and other private organizations have spent millions of dollars to educate and train health care professionals in palliative care and improve the quality of care for the terminally and chronically ill.