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Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers

Hellen Gelband

Institute of Medicine

INTRODUCTION

In 1997, the Institute of Medicine (IOM, 1997) described a system of professional end-of-life care whose major deficiencies included

  • a curriculum in which death is conspicuous mainly by its relative absence;

  • educational materials that are notable for their inattention to the end stages of most diseases and their neglect of palliative strategies; and

  • clinical experiences for students and residents that largely ignore dying patients and those close to them.

However, it also reported “increasing acknowledgement by practitioners and educators of the compelling need to better prepare clinicians to assess and manage symptoms, to communicate with patients and families, and to participate in interdisciplinary caregiving that meets the varied needs of dying patients and those close to them.” The increasing interest had already translated into new programs by professional societies, medical schools, and private foundations, and these continue. However, impressive as the initiatives are, they are small in scale compared with national needs. The IOM report cautioned that “persistence in their implementation, evaluation, redesign, and extension will be necessary to keep the promise from fading once initial enthusiasm subsides,” and this caution remains appropriate in 2001. This chapter takes as a starting point one of the 1997 report’s major recommendations:



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Improving Palliative Care for Cancer 9 Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers Hellen Gelband Institute of Medicine INTRODUCTION In 1997, the Institute of Medicine (IOM, 1997) described a system of professional end-of-life care whose major deficiencies included a curriculum in which death is conspicuous mainly by its relative absence; educational materials that are notable for their inattention to the end stages of most diseases and their neglect of palliative strategies; and clinical experiences for students and residents that largely ignore dying patients and those close to them. However, it also reported “increasing acknowledgement by practitioners and educators of the compelling need to better prepare clinicians to assess and manage symptoms, to communicate with patients and families, and to participate in interdisciplinary caregiving that meets the varied needs of dying patients and those close to them.” The increasing interest had already translated into new programs by professional societies, medical schools, and private foundations, and these continue. However, impressive as the initiatives are, they are small in scale compared with national needs. The IOM report cautioned that “persistence in their implementation, evaluation, redesign, and extension will be necessary to keep the promise from fading once initial enthusiasm subsides,” and this caution remains appropriate in 2001. This chapter takes as a starting point one of the 1997 report’s major recommendations:

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Improving Palliative Care for Cancer Educators and other health professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care well for dying patients. Within medicine, nursing, and social work, the recognition of deficiencies in education are well known, and each profession has at least initiated efforts to improve the status quo. However, the recognition that improvements are needed does not bring the knowledge and tools necessary to accomplish those ends. This is the task that lies ahead and that will require persistent effort and increased and sustained funding for a wide range of activities. Thus far, funding for the major initiatives have been led by private foundations. With successful programs started and ideas for new approaches proliferating however, the amount of funding that can be put to productive use is much greater. Sustained progress at this juncture requires a substantial commitment of support from the public sector as well as continued support for innovation from the private sector. PHYSICIAN EDUCATION IN END-OF-LIFE CARE Most U.S. physicians—oncologists, other specialists, and generalists alike—are not prepared by education or experience to satisfy the palliative care needs of dying cancer patients or even to help them get needed services from other providers. With half a million people dying from cancer each year in this country, this is a stark, but robust finding. The strongest sources of supporting evidence are studies during the late 1990s documenting end-of-life and palliative care content in undergraduate and residency coursework, and studies during the late 1990s of medical textbook content on end-of-life and palliative care. Consistent with these sources are responses given by oncologists to American Society of Clinical Oncology (ASCO) 1998 survey questions about their training in end-of-life and palliative care and their abilities to provide appropriate care of this type (Emanuel, 2000). The evidence is consistent with a lack of funding for end-of-life and palliative care educational initiatives, which has begun to change only recently. Even in 2001, however, the programs are small and funded largely by private grant-making organizations, with little contribution by the federal government. Perhaps even more persuasive is the complete lack of documented disagreement about the poor state of end-of-life medical education.

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Improving Palliative Care for Cancer End-of-Life Care Education During Medical School and Residency Programs The subject of “death and dying” first entered the medical school curriculum in the 1960s, as a topic of discussion in preclinical coursework. Movement toward integrating end-of-life and palliative care into the clinical curriculum has begun much more recently. In 1999, the Medical School Objectives Project identified “knowledge…of the major ethical dilemmas in medicine, particularly those that arise at the beginning and end of life…” and “knowledge about relieving pain and ameliorating the suffering of patients” as subjects that should be mastered by all undergraduate medical students (Medical School Objectives Writing Group, 1999). Students in some programs may get the training and opportunities needed, but according to the most recent and most complete survey of medical school and residency end-of-life and palliative care curricula, most do not. Barzansky and colleagues (1999) used three annual surveys that collectively cover all medical school and residency programs to analyze end-of-life and palliative care content. Results for undergraduate medical education and residency programs are summarized separately. Undergraduate Medical Education Two surveys provide information on medical school curricula: the Liaison Committee on Medical Education (LCME) Annual Medical School Questionnaires for years 1997–1998 and 1998–1999, and the 1998 Association of American Medical Colleges (AAMC) Graduation Questionnaire. The LCME survey goes to the deans of all 125 LCME-accredited medical schools each year, and in the two years described here, all deans responded. The AAMC questionnaire went to all 14,040 students graduating from the 125 medical schools, of whom 88 percent responded. The LCME survey asked different questions about end-of-life and palliative care in each of the two years. In 1997–1998, the question was whether selected topics related to end-of-life care were included in the curriculum as courses that were required, parts of required courses, electives, or a combination of these. In the second year, schools were asked (1) whether certain topics related to the care of terminally ill patients were covered in required lectures or conferences and (2) whether students spent time during required courses or clerkships in clinical units devoted to care of terminally ill patients. The 1998 AAMC survey asked students to rate the level of time devoted to end-of-life issues (among others) as either inadequate, appropriate, or excessive. LCME SURVEYS At all schools, students have some exposure to end-of-life

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Improving Palliative Care for Cancer coursework, but it is overwhelmingly in broader courses, not in required courses on end-of-life topics (Table 9-1). More than half the schools do not offer even one elective course devoted to end-of-life issues. The survey provides no information on how much time was spent on relevant topics or how they were covered but does suggest that there are substantial gaps. For instance, 30 percent of the schools appear to have no required instruction on at least one of the three topics asked about in 1997–1998. The 1998– 1999 survey also asked about direct experience with patients in hospice care (or other settings in which the focus was on end-of-life or palliative care) (Table 9-2). At 20 percent of the schools, such experience was required, and at another 20 percent, it was not available at all. No information was gathered on the percentage of students who took advantage of the elective opportunity offered in the remaining three-fifths of the schools. AAMC MEDICAL SCHOOL GRADUATION QUESTIONNAIRE The AAMC annual survey asks graduating medical students to rate the adequacy of instruction in various areas. In 1998, they were asked about death and dying, and pain TABLE 9-1 LCME Annual Medical School Questionnaire—Course Content (125 Schools=100%) Type of Course Required Course No. (%) Some Material in Required Course No. (%) Elective Course No. (%) 1997–1998 Survey Death and dying 4 (3%) 121 (97%) 34 (27%) Pain management 1 (1%) 105 (84%) 34 (27%) Palliative care 1 (1%) 97 (78%) 24 (19%) At least one of above 3   125 (100%)   None of above     69 (55%) 1 item only   15 (12%) 30 (24%) 2 items only   22 (18%) 17 (14%) All 3 items   88 (70%) 9 (7%) 1998–1999 Survey Symptom control NR 96 (77%) NR Advance directives NR 108 (86%) NR Communication with patients and families NR 118 (94%) NR Ethical issues NR 122 (98%) NR All 4 items NR 90 (72%) NR NOTE: NR=not reported. SOURCE: Barzansky et al., 1999.

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Improving Palliative Care for Cancer TABLE 9-2 LCME Annual Medical School Questionnaire: Experience in Hospice or Other End-of-Life Care Setting, 1998–1999 Survey (125 Schools=100%) Type of Experience No. (%) Required course or clerkship 24 (19%) Elective—some students 74 (59%) No such experience offered 27 (22%)   SOURCE: Barzansky et al., 1999. management (Table 9-3). The responses are subjective, but again, they suggest strongly that students are not prepared to care for dying patients as well as they could be during their undergraduate medical education. Residency Programs The 1997–1998 American Medical Association (AMA) Annual Survey of Graduate Medical Education was sent to 7,861 residency programs (all of those accredited by the Accreditation Council on Graduate Medical Education), of which 96.5 percent responded. The survey asked whether each program had a structured curriculum in end-of-life care. (No more specific definitions of what might be included in an end-of-life curriculum were provided, so the term may have been interpreted differently by different respondents.) Overall, 60 percent of programs reported that they did have a structured curriculum, but there was tremendous variability among programs in different specialties. Of the types of physicians most likely to care for dying patients 92 percent of programs in family practice and internal medicine and 98 percent in critical care medicine reported positively, and between 60 percent and 70 percent of programs in obstetrics-gynecology, pediatrics, psychiatry, and surgery reported positively. The results of these recent surveys suggest that undergraduate medical and residency training lacks adequate content in end-of-life care, but without much detail. One would like to know what topics are covered in end-of-life education, the format (i.e., lectures, discussions, clinical experience), how much time is devoted to each subject, and how well students are prepared by the extent and types of training they receive. This information has not been assembled in a comprehensive way, but pieces of it are ex-

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Improving Palliative Care for Cancer TABLE 9-3 AAMC Medical School Graduation Questionnaire: Level of Coverage of Death and Dying and Pain Management 1998 Survey (N= 13,861 responses out of 14,040 eligible) Topic Excessive No. (%) Appropriate No. (%) Inadequate No. (%) Death and dying 389 (3%) 9,398 (68%) 4,074 (29%) Pain management 65 (0.5%) 4,696 (34%) 9,124 (66%)   SOURCE: Barzansky et al., 1999. plored in the recent literature in different ways. A wide-ranging review of published literature and grant proposals for end-of-life care by Billings and Block (1997) has brought together the relevant material. Billings and Block (1997) searched the published literature for articles on palliative care and related topics for the years 1980 through 1995 and reviewed palliative care education grants funded by the National Cancer Institute or submitted for funding to the Project on Death in America. One hundred eighty articles—culled from more than 9,000 potentially relevant citations—form the basis of their analysis. Their findings, which complement and support the findings of the recent surveys discussed earlier, are summarized here. CURRICULUM IN END-OF-LIFE CARE Some of the literature reviewed by Billings and Block (1997) represented reports of the surveys of medical school deans in years earlier than those characterized by Barzansky and colleagues (1999). The following findings were reported from the 1989 survey of medical school deans, which at the time numbered 124, of whom 111 responded (Mermann et al., 1991). Twelve of the schools had no curriculum at all in death and dying. In 30 schools, one or two lectures on death and dying were included in other courses. In 51 schools, it was taught as a distinct module in a required course, consisting of four to six lectures or a combined lecture and seminar series with small-group discussion. Eighteen schools offered a separate course on death and dying, which was required in the first two years by nearly half of the schools. The format varied from a one-weekend workshop to semester-long lecture and seminar classes, with the lecture format predominating (15 schools). There was very little contact with dying patients in any program. The class presidents of all U.S. medical schools were polled in 1991 about terminal care education (Holleman et al., 1994). Among the findings highlighted by Billings and Block are

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Improving Palliative Care for Cancer more than one-quarter reported one hour or less of class time, 39 percent recalled some reading on the topic, and 37 percent rated the quality of teaching “ineffective” and 3 percent rated it “very effective.” In contrast to the students’ evaluations, a national sample of cancer center directors and directors of nursing oncology reported high levels of satisfaction with supportive care instruction (greater than 90 percent) (Belani et al., 1994). However, in the one institution where students were actually studied, the level of satisfaction was 27 percent. RELATED FINDINGS When Billings and Block reviewed the literature in the mid-1990s, they found a number of small, more detailed studies, all of which lend support to the need for more attention to end-of-life care. Their findings span research published from 1980 through 1995; thus, some findings may be less relevant in 2001 than when published, but the pace of change has not been so great that this is necessarily so. Following are some provocative observations from individual studies: 30 percent of a random sample of generalists in Oregon recalled medical school training in dealing with dying patients, and 87 percent thought that more such instruction should be given in medical school; 39 percent of a sample of young physicians felt they had good or excellent preparation for managing the care of patients who want to die; 41 percent of students completing third-year clerkships were never present when an attending physician talked with a dying person, 35 percent had never discussed with an attending physician how to deal with terminally ill patients, 73 percent had never been present when a surgeon told a family about bad news after an operation, and one-third could not identify problems that would arise for family members when a dying patient was discharged to go home. Articles on end-of-life care during residency reviewed by Billings and Block (1997) are consistent with the more recent survey findings. A similar survey of 1,068 accredited residency programs in family medicine, internal medicine, pediatrics, and geriatrics, published in 1995 (Hill, 1995) found that 26 percent of all residency programs in the United States offer a standard course in end-of-life care, almost 15 percent of programs offer no formal training in care of terminally ill patients, and 8 percent require a hospice rotation and 9 percent offer an elective one.

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Improving Palliative Care for Cancer More than 1,400 residents in 55 internal medicine residency programs were surveyed by the American Board of Internal Medicine about the adequacy of their training in end-of-life care (reported in Foley, 1997). The percentage of residents reporting “adequate training” in specific areas was 72 percent, managing pain and other symptoms; 62 percent, telling patients that they are dying; 38 percent, describing what the dying process will be like; and 32 percent, talking to patients who request assistance in dying. Conclusions Most new physicians leave medical school and residency programs with little training or experience in caring for dying patients. In most cases, a few lectures are folded into other courses (in many cases in psychiatry and behavioral sciences, ethics, or the humanities). A few schools offer full-length courses on end-of-life care, but they are nearly all electives. According to the limited information available, most end-of-life training is provided in lectures only. Contact with dying patients, particularly for undergraduate medical students, if any, is limited. Formal curriculum in end-of-life care is presented predominantly in preclinical years. In clinical training, which tends to be more informal and less systematic, teachers may have no special interest or expertise in end-of-life care. The importance of role models and mentors who are enthusiastic about caring for dying patients has largely been overlooked. There is a tremendous opportunity to train the next generation of physicians in the care of dying patients. At the same time, opportunities must be created to improve the competence of physicians who are already practicing, but who have had inadequate preparation in end-of-life care. End-of-Life Care in Medical Textbooks Textbooks play an important role both in educating medical students and in informing practicing physicians of the standard of care for each disease covered. The topics included in textbooks and the way information is organized may be strong influences on the practice of medicine. In the past few years, researchers have looked systematically at the information relating to end-of-life issues that is contained in a variety of medical textbooks. Two landmark studies, one of general medical texts and the other of medical specialty texts, which are the most recent and comprehensive, are presented here (a similar analysis of nursing texts is discussed later in this chapter). Both studies included specific cancers in their analyses.

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Improving Palliative Care for Cancer End-of-Life Content in Four General Medical Textbooks The study of general medical textbooks (Carron et al., 1999) focused on four widely used books: Harrison’s Principles of Internal Medicine (Isselbacher et al., 1994), the Merck Manual (Berkow, 1992), Scientific American Medicine on CD-ROM (SAM-CD, 1994), and Manual of Medical Therapeutics (Ewald and McKenzie, 1995; also known as the Washington Manual). In addition, the authors reviewed (although not in the same quantitative format as the target texts) William Osler’s (1899) Principles and Practice of Medicine, and the Mayo Clinic Family Health Book (Larson, 1996) a medical reference for nonprofessionals. Information was sought from each book on 12 of the leading causes of death in the United States, and for each disease, nine “content domains” were assessed (Table 9-4). In addition to displaying the content score for each domain by disease, a rough overall score was calculated for each book by assigning a value of 1 for each “+” rating and 2 for each “++” rating and dividing the total by the total possible score (i.e., a rating of ++ in each category). The following are some general findings (Carron et al., 1999): Harrison’s Principles of Internal Medicine, the Merck Manual, and Scientific American Medicine characterized medical interventions and prognostic factors but often did not mention decisionmaking or the effect of death and dying on the patient’s family. The Washington Manual “offered almost no helpful information.” Dementia, AIDS, lung cancer, and breast cancer received the most comprehensive coverage of issues related to dying. However, “the best TABLE 9-4 End-of-Life Care in General Medical Textbooks Diseases Studied Content Domains AIDS Dementia Chronic obstructive pulmonary disease Congestive heart failure, chronic renal failure Cancer: breast, lung, pancreas, and colon Cirrhosis Diabetes Stroke Epidemiology Prognostic factors Disease progression Medical interventions that change disease course Advance care planning Mode of death Decisionmaking Effect of death and dying on patient’s family Symptom management   SOURCE: Carron et al., 1999.

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Improving Palliative Care for Cancer coverage…was scored as presenting useful information in only five of the nine domains.” Overall scores ranged from 11 percent for The Washington Manual to 38 percent for Harrison’s Principles of Internal Medicine. In contrast to the lack of coverage in medical textbooks, the Mayo Clinic Family Health Book contains a chapter on death and dying with a comprehensive discussion of “pain control in a terminal patient, the emotions of a dying patient, hospice care, funeral arrangements, when and how to tell the patient about a terminal diagnosis, and what the family should expect” (Carron et al., 1999). Osler’s 1899 textbook was found to be more straightforward about the fact of death but generally not about how to help patients cope with dying. One exception is Osler’s admonition to use opiates for patients dying of hemorrhage into the lungs, to suppress terror and dyspnea. This information did not appear in any other text. End-of-Life Content in 50 Medical Specialty Textbooks The end-of-life content of 50 top-selling textbooks in a variety of specialties (Table 9-5) was the subject of the second major review (Rabow et al., 2000). The methodology followed closely the methods used by Carron and colleagues in their study of general medical textbooks, but the content domains were expanded and the medical conditions studied necessarily varied from book to book and were chosen to represent the common causes of death in each specialty. The authors also reviewed the tables of contents for chapters dealing specifically with end-of-life care and searched the indexes for 18 relevant key words. In scoring, rather than calculating an overall score for each book (as Carron and colleagues did), the results are presented as the percentage of instances of “absent,” “minimal,” and “helpful” information. When the overall scores for each specialty were calculated (the average of the individual textbook scores in each specialty), there were some differences among specialties but a generalized pattern of 50–70 percent absent content and lower scores (i.e., poorer ratings) for minimal or helpful content (see Rabow et al., 2000, figure 1). Although the differences were not large, the authors noted that textbooks with the least end-of-life content were in the specialties of infectious diseases and AIDS, oncology and hematology, and surgery. Information on how each domain was covered was presented for the six internal medicine textbooks. The 14 conditions analyzed in these texts included three cancers (breast, colon, and lung). The best-covered domains were epidemiology and natural history (i.e., consistent ratings of 2), and the

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Improving Palliative Care for Cancer TABLE 9-5 End-of-Life Care Content of 50 Textbooks: Specialties, Content Domains, Scoring Specialties Included (No. of books) Content Domains Scoring Cardiology (4) Emergency medicine (4) Family and primary care medicine (5) Geriatric medicine (5) Infectious disease and AIDS (3) Internal medicine (6) Neurology (3) Oncology and hematology (6) Pediatrics (4) Psychiatric medicine (3) Pulmonary medicine (4) Surgery (3) Epidemiology (vital statistics) Natural history (prognosis, time course, mode of death, symptoms) Pain management Nonpain symptom management (dyspnea, nausea and vomiting, delirium, fatigue, etc.) Psychological issues (depression, anxiety, fear, loneliness, grief) Social and demographic issues (interpersonal relationships with spouses or partners, family, and friends; race; cultural and economic issues) Spiritual issues (abandonment, completion of tasks, acceptance, religious tasks, choices) Family issues (communication of patient and family member wishes, grief and bereavement, informal caregiver role and support, education, economic issues) Definition of end-of-life care (definition of death and goals of care) Ethics Law Policies (individual vs. organization ethics, patients’ self-determination, double effect, withdrawal and withholding of life support) Physician after-death responsibilities (pronouncement, autopsy, organ donation) Physician roles (communication with patient and family, personal grief and bereavement) Context of care (advance directives, options for end-of-life care, referral to hospice, funeral arrangements) 0: Absent 1: Minimal 2: Helpful   SOURCE: Rabow et al., 2000 worst were social, spiritual, and family issues; ethics, and physician responsibilities. In the remaining domains, minimal information (a rating of 1) was most common. Ten conditions were appropriate to more than one specialty, and these included two cancers: lung cancer and leukemia. Lung cancer was covered in family and primary care medicine, internal medicine, and oncology-hematology; leukemia in family and primary care medicine and pediatrics, in addition to oncology-hematology. For lung cancer, oncology-hematology had the lowest helpful score (11.6 percent), followed by internal medicine (20.5 percent), and family and primary care had the best helpful score

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Improving Palliative Care for Cancer TABLE 9-7 End-of-Life Care Content in 50 Nursing Textbooks Categories No. Texts Reviewed Chapters Devoted to End-of-Life Content/ Total Chapters Pages Related to End of Life/ Total Pages AIDS/HIV 1 0/16 20.0/26 Assessment/diagnosis 3 0/80 15.3/1783 Communication 2 0/35 38.0/767 Community/home health 4 0/116 21.3/3108 Critical care 4 2/181 80.8/4116 Emergency 2 1/69 14.5/1006 Ethics/legal issues 5 4/88 143.0/2018 Fundamentals 3 3/140 114.9/4353 Gerontology 5 2/72 84.8/2515 Medical-surgical 2 2/298 146.3/9969 Oncology 2 7/149 107.5/3264 Patient education 3 0/26 8.0/636 Pediatrics 4 2/70 33.5/2599 Pharmacology 3 0/236 22.0/3476 Psychiatry 3 1/127 35.3/2886 Nursing review 4 0/47 17.0/2661 TOTAL 50 24/1750 (1.4%) 901.9/45,683 (2%)   SOURCE: Ferrell et al., 1999b. For each critical content area, a list of specific types of information were prespecified as important for inclusion in a text. For examples, under “Pain,” the topics identified were: definition of pain; assessment of pain—physical; assessment of meaning of pain—scales; pharmacologic management of pain at end of life (classes of analgesics); use of invasive techniques; principles of addiction, tolerance, and dependence; nonpharmacologic management of pain at end of life; physical pain versus suffering; side effects of opioids; barriers to pain management; fear of opioids hastening death or opioids near death; equianalgesia; and recognition of nurses’ own burden in pain management.

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Improving Palliative Care for Cancer The authors tallied the presence of end-of-life information in various ways, including examining tables of contents and indexes for mentions, as well as analyzing each text for the critical content areas. Among the key findings are the following: 1.4 percent of all chapters (24 out of 1,750) and 2 percent of all content (902 out of 45,683 pages) were devoted to any end-of-life topic; 30 percent of the texts had at least one chapter devoted to end-of-life issues (the vast majority were devoted only to pain); the strongest coverage was in the two areas of pain and issues of policy or ethics; end-of-life topics with the poorest coverage were quality of life issues and role and needs of family caregivers; and overall, 74 percent of the prespecified content was absent, 15 percent was present and 11 percent was present and useful or commendable. The authors also qualitatively analyzed the information that was found in the texts, drawing a number of conclusions, among them: most end-of-life content focused only on cancer and AIDS; although pain was frequently discussed, the text referred mainly to acute or chronic pain, and not pain at the end of life; minimal content was found on pain assessment, neuropathic pain, or pain assessment in the cognitively impaired or nonverbal patient; outdated drug approaches were frequently recommended, and there was virtually no information on pain management at the end of life; minimal information was found on symptoms other than pain at the end of life; and the four pharmacology texts all included erroneous information and lacked information on current approaches to pain and symptom management. The overarching finding was a lack of content on essential topics for end-of-life care. Ongoing Programs and Initiatives As is the case for education programs for physicians, much of support for nursing education comes from private foundations (Table 9-8). SOCIAL WORK EDUCATION IN END-OF-LIFE CARE Social workers are central to counseling, case management, and advocacy services for the dying and for bereaved families. With their focus on

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Improving Palliative Care for Cancer TABLE 9-8 Major Recent and Ongoing End-of-Life Nursing Education Projects Name, Funding Source, Duration Description and Aims RWJF Funded or Supported Projects Strengthening Nursing Education in Pain Management and End-of-Life Care City of Hope National Medical Center 11/1/97–10/31/00 $793,014 Three-pronged project, including review of 50 most commonly used nursing textbooks for end-of-life content; in collaboration with National Council of State Boards of Nursing, review of end-of-life content of nursing licensure examination; and work with nursing education accrediting bodies to incorporate end-of-life care standards into nursing education. Strengthening End-of-Life Care in Nursing Practice Oncology Nursing Certification Corporation 1/1/99–6/30/00 $165,125 Three main goals are (1) determine adequacy of content of end-of-life nursing care through specialty nursing certification examinations, (2) improve end-of-life content in nursing continuing education programs; and (3) support specialty nursing certification organizations to promote competence in end-of-life care. EOL Educational Materials for Nursing School Faculty and Practicing Nurses University of Washington School of Nursing 5/1/99–4/30/03 $1,584,242 To create, develop, and market educational materials for interactive learning of palliative care nursing in two versions—one for nurse educators and a self-study version for practicing nurses. End-of-Life Nursing Education Consortium (ELNEC) City of Hope National Medical Center and American Association of Colleges of Nursing 2/1/00–7/31/03 $2,224,543 ELNEC is a project for nursing parallel to EPEC for physician education. The goal is to create a comprehensive end-of-life curriculum for nurses, which will be implemented in this project; by 450 undergraduate nursing programs, 225 continuing education providers, and the 100 state boards of nursing. NOTE: EPEC=Education for Physicians on End-of-Life Care; RWJF=Robert Wood Johnson Foundation.

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Improving Palliative Care for Cancer the psychosocial aspects of the dying process, they work not only with patients but with those around them in making decisions about treatment options, marshaling resources, helping families cope with terminal illness and death of a relative, and generally encouraging the best quality of life for all concerned. The demands on social workers have changed over time. A major reason is the shift from largely hospital-based care for those who are dying to home, hospice, and other settings, which has required social workers to coordinate a broadening array of services and providers and to navigate a more complex set of rules and regulations. Just as nursing and medicine have begun to do, the social work profession has been examining its education process for preparing practitioners to care for dying patients and their families. Efforts to improve undergraduate and master’s level social work training in this area are just getting under way in the United States, in comparison to the more mature field in Canada and England, and in comparison to medical and nursing education. Quite recently, opportunities have been identified, and some programs initiated, to begin making the needed changes. End-of-Life Care Training in Social Work Education3 Studies in the 1990s began to look at the end-of-life content of social work education and the preparedness of social workers to care for dying patients and their bereaved families. Four small but prominent studies set the stage for the most definitive review of this issue, by Christ and Sormanti (1999). Briefly, of the four earlier studies, one was a survey of 108 hospice social workers from around the country, which found a uniform lack of preparation at the master’s level for end-of-life care (Kovacs and Bronstein, 1998). The second consisted of a focus group of 10 oncology social work supervisors who described serious gaps in the social work curriculum related to end-of-life care (Sormanti, 1995). A survey of social work programs found that in most, the end-of-life content was folded into courses on “human behavior and the social environment” or into gerontology courses. Less than a quarter of all students enrolled in these courses when they were electives (Dickinson et al., 1992). The last study was based on a questionnaire given to 50 M.S.W. students at the beginning of the second year, who reported feeling “a little” or “somewhat” prepared to deal with dying patients and their families (Kramer, 1998). Though small and of varied types, these studies suggest that, like medi- 3   This section is largely based on the work of Christ and Sormanti (1999).

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Improving Palliative Care for Cancer cine and nursing, social work students have insufficient training—both didactic and practical—to provide the best care at the end of life. (No studies of social work textbooks for end-of-life care content have yet been carried out.) Christ and Sormanti (1999) extended the earlier efforts with surveys and focus groups designed to address the following issues (of which the last two are of most interest in this section): barriers to effective social work practice in palliative care and care of the bereaved, the adequacy of M.S.W. practitioners’ preparedness for this work, and the extent of social work educators’ experiences in teaching and research in bereavement and end-of-life care. The first survey involved 48 oncology social workers attending the 1998 annual meeting of the Association of Oncology Social Workers. Regarding education, they were asked about their preparation in M.S.W. programs and about postgraduate training and educational opportunities. The practitioners uniformly reported insufficient training in end-of-life issues to prepare them for the work they were doing. None except for the few who had trained in hospice settings had clinical experience with dying patients. The respondents were asked about their preparation in 10 skill categories, with the result that in only two—supportive counseling and advocacy—did less than half rate their preparation as “unsatisfactory.” At least 50 percent rated end-of-life training in symptom management, communication, bereavement, education, ethics, case management, decisionmaking, and discharge planning as unsatisfactory. Only one continuing education program associated with a school of social work was identified among the 48 participants. Overall, most lacked access to continuing education programs that were at all satisfactory. Even where programs exist, finding funds to attend and being able to take time away from work are significant barriers. In addition, most programs highlight medicine and nursing, and few social workers speak in the relevant courses. Five focus groups were held with social workers who provide end-of-life services, and they largely corroborated the findings of the survey. Finally, 35 faculty members from 30 schools of social work were surveyed about end-of-life care content in their own programs and about research on related topics. They reported that only a small proportion of students receive instruction in end-of-life issues and that it comes in small parts of courses on human behavior and the social environment, policy, and practice. It usually consists of one or two lectures. More comprehensive elective courses were taken by a minority of students. Only one-quarter of

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Improving Palliative Care for Cancer survey participants believed that their schools adequately prepared students for end-of-life work. Research funding was a very scarce commodity: about one-quarter reported even modest monetary support for their ongoing research. They reported that they were aware of no money targeted specifically for end-of-life research in social work. Opportunities for Improving Social Work End-of-Life Education Some specific areas that could benefit from funding and development of programs are better undergraduate and master’s level curricula in end-of-life care; innovative programs that integrate coursework with clinical work through alliances between schools and practice sites; accessible continuing education designed and provided by social work experts in end-of-life care; and collaborative educational programs with other professions working with dying patients and bereaved families. Also key is funding earmarked for social work research to provide a better foundation for the development of innovative methods of care. Ongoing Programs and Initiatives The Project on Death in America has begun a program of Social Work Leadership Development Awards to promote innovative research and training projects for collaborations between schools of social work and practice sites that will advance the ongoing development of social work practice, education, and training in the care of the dying. The Hartford Foundation also provides support for gerontology social workers. The National Cancer Institute does not currently fund any social work education projects. RECOMMENDATIONS FOR IMPROVING PROFESSIONAL EDUCATION FOR PHYSICIANS, NURSES, AND SOCIAL WORKERS IN END-OF-LIFE CARE Leaders in medicine, nursing, and social work have recognized that training in end-of-life care has been inadequate. These leaders have systematically documented at least some of the shortcomings in the education process and continue to add to the information base. This has been effective both in broadening recognition among the professions of the need for improvements and in serving as a basis for determining what tasks must be

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Improving Palliative Care for Cancer accomplished to effect improvements. The work has been concentrated among a small group of experts nationwide, and funding has come almost exclusively from private foundations, which have catalyzed these movements. At this point, the groundwork has been laid for larger-scale activities, which could move quickly with significant funding from the federal government, in particular, the National Cancer Institute (NCI) and other National Institutes of Health. Faculty Development Few medical, nursing, or social work faculty, either at the undergraduate or graduate level, are knowledgeable and enthusiastic about end-of-life care and therefore are unlikely to be effective teachers. To compound this, little end-of-life care is included in the grand rounds, teaching conferences, or journals clubs of traditional continuing education programs. More intense faculty development programs should be offered to improve communication, mentoring, and other teaching skills. Recommendation: NCI should fund a national oncology faculty development programs along the lines of the Project on Death in America Faculty Scholars Program. Improved Educational Materials New materials have to be created and existing materials improved for training new and practicing physicians, nurses, and social workers. This includes adding end-of-life content to textbooks, producing pocket guides and other references, and developing continuing education materials for practicing professionals. Recommendation: NCI should make funding available for the development of appropriate materials, which could be pilot-tested by students and fellows in NCI-designated cancer centers. This could be accomplished through the “R25” mechanism, which was used to fund a small number of recent grants after a one-time call for proposals. Coordination of Medical, Nursing, and Social Work Schools and Teaching Hospitals Education takes place in a number of settings throughout the schooling process. Each medical, nursing, and social work school should develop a plan for teaching end-of-life care. This could be overseen by a committee with responsibility to review content across the entire curriculum, including

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Improving Palliative Care for Cancer preclinical and all phases of clinical education in outpatient, acute care hospital, long-term care, and home and hospice settings. Coordination should also emphasize the need for interdisciplinary teamwork in caring for dying patients. Students should experience working together with physicians of different specialties, nurses, social workers, psychologists, other mental health workers, and clergy. They should also be instructed in caring for and have opportunities to interact with, dying patients and their families (Weissman et al., 1999). Recommendation: In addition to coordination by the schools themselves, NCI should provide clinical training fellowship slots at all NCI-designated cancer centers that have clinical programs, including training in both clinical care and palliative or end-of-life care research for all of the relevant professions. Specific cancer centers could also be developed as “centers of excellence” for palliative and end-of-life care training and research. Residency Program Guidelines The residency review committees that establish guidelines for clinical training have generally not mandated the inclusion of end-of-life or palliative care instruction. Perhaps presaging change, however, the internal medicine residency review committee has revised its guidelines to require instruction in palliative care and recommend clinical experiences in hospice and home care. Recommendation: All residency review committees should be canvassed to determine the status of end-of-life care in each set of guidelines. Each specialty should be encouraged to consider appropriate changes, and technical assistance should be offered, if necessary. This activity would not require large amounts of funding, but some money for coordination and consultation should be made available by either the government, academic institutions, or foundations. Licensing and Certifying Examinations Both undergraduate licensing and graduate certification examinations have begun to include more questions on end-of-life care, but the content is still minimal. More questions on these exams will likely promote appropriate additions to the curricula. Recommendation: Licensing and certifying bodies should be encouraged and assisted in developing appropriate examination questions.

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Improving Palliative Care for Cancer This should be coordinated with curriculum development and textbook revisions. A coordinating function might be helpful in ensuring communication among the key players, funded by public or private sector sources. Improving the Research Base for Palliative Care Education In addition to the many unanswered clinical questions surrounding end-of-life care, there is research to be done that could directly benefit the education process. The “epidemiology of dying” would describe where, how, and under whose care patients die in different settings, including the interactions of physicians, nurses, social workers, clergy, family, and other caregivers. Information about the effect on physicians and other caregivers of caring for dying patients could also help guide education. The transition period of “prognostic uncertainty,” when choices must be made in the face of an uncertain outcome, is relatively unstudied in terms of what the choices are for patients and physicians. Recommendation: NCI should initiate a grant program for these activities by issuing a request for proposals in this area and by continuing such a program over the long term. Activities of Professional Organizations Medical societies of various kinds, as well as societies of medical educators, can take a leadership role in placing end-of-life care prominently on the educational agenda. They can assess the educational needs of their members, develop clinical practice guidelines, encourage research, highlight end-of-life care at annual and other meetings, and undertake other activities (Weissman et al., 1999). Standard-setting organizations such as JCAHO can promote more comprehensive end-of-life care requirements for hospitals, nursing homes, and other institutions. They also can help to educate medical administrators about quality end-of-life care (Weissman et al., 1999). Recommendation: Private sector organizations should be encouraged by government to undertake these activities and should be provided with technical assistance, if needed. Funding could come from either public or private sector sources.

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