Educating Clinicians and Other Professionals
The resident said there was "nothing to do" for this young man with head and neck cancer who was "endstage." He was restless and short of breath and he looked terrified and couldn't talk. I didn't know what do for him, so I patted him on the shoulder, said something inane and left and at 7:00 a.m. he died. The memory haunts me. I failed to care for him properly because I was ignorant.
Adapted from Charles von Gunten, Why I Do What I Do, 1996, p. 47
Critics have taken the medical education community vigorously to task for failing to sufficiently educate health professionals about how to provide superior, or even competent, care for dying patients. 1 On a more personal level, many physicians can recount how poorly prepared they were as students and residents to encounter dying patients and their families and how profound have been the lessons they have learned from their patients (see, e.g., ABIM, 1996b). Deficiencies in undergraduate, graduate, and continuing education for end-of-life care reflect a medical culture that defines death as failure and ignores care for dying people as a source of professional accomplishment and personal meaning. As reviewed in this chapter, major deficiencies include
- 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.
Since this study was first considered, the committee has seen increasing
acknowledgment 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. Professional organizations including the American Medical Association and the American Board of Internal Medicine have launched major educational initiatives directed at both students and established clinicians, and individual medical schools are redesigning their curricula. Private foundations are supporting a number of curriculum development projects. (Appendixes C, G, and I include materials related to several of these initiatives.) The alumni bulletin of the Harvard Medical School devoted most of its Winter 1997 issue to end-of-life topics including one article on a course, Living with Life-Threatening Illness, that was developed in response to student requests and with a grant from the National Cancer Institute (Block, 1997).
These and other initiatives are promising, but persistence in their implementation, evaluation, redesign, and extension will be necessary to keep the promise from fading once initial enthusiasm subsides. In particular, the clinical elements of end-of-life care require more emphasis. For example, the committee was struck by how many schools for health professionals seem to assign end-of-life issues to ethics seminars and discussions (see, e.g., Dickinson and Mermann, 1996). Certainly, such a foothold may serve as a starting point for drawing attention to difficult clinical choices. The committee believes, however, that it is unwise and unacceptable to segregate death and dying from the rest of the clinical curriculum.
The first part of this chapter, which draws on the discussion in Chapter 3, considers the core elements of professional competence in caring for those approaching death. The rest of the chapter focuses on the undergraduate and graduate education of physicians, nurses, and social workers and also points to the importance of continuing education. The fundamental argument of the chapter is that health professions education can do better in
- conferring a basic level of competence in the care of the dying patient for all practitioners;
- developing an expected level of palliative and humanistic skills considerably beyond this basic level; and
- establishing a cadre of superlative professionals to develop and provide exemplary care for those approaching death, to guide others in the delivery of such care, and to generate new knowledge to improve care of the dying.
The emphasis in this chapter on professional education should not imply lack of concern about what happens in colleges, high schools, grade schools, and homes. Medical education is a powerful, transforming, and
sometimes desensitizing force (Cassem, 1979; Klass, 1987; Reilly, 1987; Hafferty, 1991), but its impact is tempered by preexisting attitudes and understandings that have developed from childhood. A better understanding of the attitudes that students bring with them to professional schools and that affect their choice of health care as a profession would be useful in directing broad efforts to develop or reinforce those that support good care of dying patients. Such efforts would require the involvement of educators at every preprofessional level, parents, television producers, journalists, and others with influence over children and adolescents.
Further, although the periods of undergraduate and graduate health professions education are critical for developing the knowledge, skills, and personal qualities advocated in this report, experience in practice is also a profound teacher for the clinician who is prepared to analyze and learn. In addition, as technologies, policies, organizations, and expectations change, formal continuing education will have a role to play in helping health professionals acquire new knowledge, hone existing skills, and continually improve their abilities to care well for dying patients. The education of professionals is a life-long enterprise.
Core Components of Professional Preparation for Care at the End of Life
Different people will bring to their roles as health professionals differing intellectual talents, emotional strengths, physical capacities, and other personal qualities. Just as some individuals may not be well-suited to become surgeons or pediatric nurse specialists, others may not be well-suited to specialize in palliative care. Nonetheless, the committee believed that every health professional who deals directly with patients and families needs a basic grounding in dealing competently and compassionately with seriously ill and dying patients. Appropriate referral is important but not sufficient.
In recent decades, those concerned with the content, quality, and certification of health professions educational programs have attempted to identify core competencies and devise formal statements of expectations for undergraduate or graduate programs in many areas of health care (Blank, 1995). A few of these statements in specialty and subspecialty areas such as anesthesiology or critical care medicine cover some aspects of end-of-life care, but none are very comprehensive in setting forth the competencies needed for consistently excellent care of very ill or dying patients (Steel, 1996). No single set of competencies will be sufficient by itself for all specialties or all health care professions, but a general listing can serve as a foundation for programs tailored to specific fields.
For this foundation, this committee identified several fundamental elements of sound professional preparation for care at the end of life. They
include (1) command of relevant scientific and clinical knowledge; (2) mastery of appropriate technical, communication, interpersonal, and other skills; (3) appreciation of ethical and professional principles of care; and (4) development of organizational skills to help patients and families navigate the health care system. These four components are covered in more detail in Box 8.1, which draws from a variety of sources including the components and competencies identified by a number of organizations, clinicians, and educators (see, generally, Doyle et al., 1993; MacDonald, 1994, 1995; ABIM, 1996a; Blank, 1996a; see Appendix G for the American Board of Internal Medicine statement of clinical competencies). Although the elements listed emphasize knowledge and skills, they also reflect a concern for the attitudes, values, and feelings that shape and infuse their application in practice. For example, to the extent that students and practitioners have unexamined anxieties about death, they may unconsciously distance themselves from those who are dying and fail their patients clinically and emotionally (Howells and Field, 1982; Vargo and Black, 1984; Field and Howells, 1985).
Some specific competencies lie particularly, but not necessarily exclusively, in the realm of certain professions. For example, pharmacological management of symptoms is largely the physician's domain, although nurses, especially advanced practice nurses, may have some discretion in this area. Mobilizing community resources in behalf of patients and families is a special responsibility of social workers. Nurses play a particularly central role in coordinating interdisciplinary palliative care and attending to patient comfort. More widely shared are interpersonal and ethical competencies in end-of-life care, and many of the nonpharmacological options for preventing and managing symptoms and distress draw on the skills and sensitivities of all members of the palliative care team and, indeed, all of those who come in contact with seriously ill and dying patients.
Despite the difficulties in bringing about curriculum reform and the many legitimate competing interests,2 the stakes here—avoidable physical,
BOX 8.1 Professional Preparation for End-of-Life Care
emotional, and spiritual suffering—are too high to dismiss proposals for changing how physicians are educated to care for patients who are approaching death. The economic, political, organizational, and other pressures now facing the medical profession, if anything, make preparation for compassionate, effective, and ethical end-of-life care more important than ever. The beneficiaries of such preparation are, most obviously, patients and families. But physicians and their colleagues will also benefit from feelings of greater competence; relief from guilt about mismanaging patients; and gratitude for being able to help patients and families experience a death that is free from preventable suffering and generally consistent with what patients and families want.
The discussion below does not probe the implications of financial and political pressures facing medical schools, residency programs, and academic health centers. These pressures include threats to cut or revamp funding for graduate medical education, proposals to restrict the number of residencies (and, possibly, the use of international medical graduates), uncertainty about resources to subsidize care for the indigent, and restructuring for participation in managed care networks (or exclusion from such networks).
Although the committee recognized these pressures, it did not consider the call for improved education in end-of-life care a disproportionate burden on schools. First, palliative care is not a special interest issue; its principles of whole-patient care and teamwork provide a model for many other areas. Second, curriculum change need not be just an expensive addition but can also be an enrichment of established educational content and formats. Third, the use of existing program models and sharing of information can reduce the curriculum development burden on any single school. Fourth, the need to look beyond the hospital setting for educational opportunities is not unique to end-of-life care, but can be considered as part of a more general effort to develop nonhospital arrangements for improved training in primary and chronic care.
Undergraduate medical education combines didactic and clinical experience with an extraordinary process of professional socialization. Traditionally, the first two years have been devoted to classroom instruction, generally using a lecture format. The last two years have been structured into a series of clerkships that introduce students to patients, clinical settings, and skills. This tradition derives from reforms that first began over a century ago with the objectives of strengthening medical education and reinforcing the professional stature of medicine by establishing educational standards, eliminating poor quality proprietary schools, and incorporating
a strong science base into the curriculum (Flexner, 1910; Starr, 1982; Wheatley, 1988; Rothstein, 1992).
Although the traditional format still generally prevails, many schools have reshaped curricula to include new educational strategies. These strategies include case-based learning in small groups, earlier experiences with patients and simulated patients, a less abrupt division in the content of the first two and last two program years, and other innovations (Coggeshall, 1965; AAMC, 1992; Marston and Jones, 1992; Prockop, 1992; Pew Health Professions Commission, 1993; Tosteson et al., 1994). The scope of undergraduate education has also been enriched in varying degrees by the addition of more and better instruction in the behavioral and social sciences, ethics, humanities, medical informatics, and other topics beyond basic biological sciences and traditional inpatient clinical care.
The methods and objectives of these strategies for educational change are multifaceted and generally consistent with the basic concepts of palliative care and the directions proposed in this report. They include
- engaging students more directly in the learning process,
- strengthening problem-solving and reasoning skills,
- improving patient-physician communication,
- encouraging teamwork among health professionals,
- extending education into the community by placing students in the physician's office, nursing home, home, and other nonhospital settings,
- increasing the connections between scientific knowledge and clinical practice, and
- better preparing students for lifelong learning.
Not only are these methods and objectives consistent with the directions suggested here for education in end-of-life care, the care of dying patients offers some powerful opportunities for their application and, thus, for enriching education at many different points in a student's experience. Teamwork is an obvious example of such an opportunity. Similarly, efforts to improve communication skills might reasonably consider communication with patients and families about incurable diagnoses, unexpected or expected death, referral to hospice, and similar matters to represent one end of a continuum of progressively more difficult responsibilities.
The last two years of undergraduate medical education bring some special challenges. One challenge is arranging clerkships that are more reflective of modern clinical practice, which is less and less hospital-based. A second challenge is providing sufficient oversight, guidance, and feedback so that the clerkship experience is more than unguided observations of others and poorly supervised interactions with patients. With the sites of clerkships multiplying and moving out of the hospital, creating and main-
taining successful partnerships between educators and practitioners can be very difficult. A third challenge is providing a more meaningful general clinical experience for students in their last undergraduate year when they are beyond their first introduction to patients and are, in many cases, already thinking about specialization.
Curriculum change is clearly a political as well as an intellectual process, especially when it comes to subtracting topics and restructuring teaching methods (AAMC, 1992; Hendrickson et al., 1993). The continuing call for many varieties of educational reform have put additional stress on an already crowded medical curriculum in which it is easier to add than to subtract topics and easier to adopt reforms than to document their effectiveness. One consequence is that the preclinical curricula are, according to one educator, "stuffed with too many courses, too many lectures, and too many faculty hobby horses that leave students at the end of two years exhausted [and] disgruntled" (Petersdorf, 1987, p. 19). Departments have turf to protect, individual faculty have habits that are entrenched, and academic administrators bear scars from previous attempts at major changes. As one anonymous educator has put it, "changing a curriculum is as easy as moving a graveyard." And as one dean described change in another context, "most deans would rather take a daily physical beating than try to make significant changes in the traditional [curriculum]" (Garrison, 1993, p. 344).
In such an environment, improved education about care at the end of life can seem like just another in a continuing stream of claims for attention to such worthy issues as nutrition, aging, race and ethnicity, informed consent, substance abuse, environmental hazards, and domestic violence. The committee rejected this perspective but acknowledged the stresses that give rise to it.
Another objection to increased educational attention to end-of-life care is that most physicians will care for few dying patients (perhaps 6 to 10 a year for the average internist) and can rely on consultants in these cases. The committee acknowledged this fact but noted that (1) broad-based education rather than early specialization is the premise of today's undergraduate curriculum, (2) physicians of all kinds—regardless of specialty—deal with patients who have serious, life-limiting illnesses, and (3) the principles and values taught in palliative care are also relevant to the care of many patients who are seriously or chronically ill but not thought to be dying. In addition, physicians in a managed care environment will likely see a broader range of patients and patient problems than in the past.
Despite the intuitive appeal of many innovative educational strategies, researchers are still trying to evaluate educational innovations, such as problem-based and small-group learning, and to understand their strengths
and limitations compared with traditional lectures on abstract concepts. 3 Again, this is an issue that is generally relevant to educational reform rather than specific to calls for greater attention to the care of dying patients.
As important as undergraduate medical education is in providing a conceptual, scientific, and ethical foundation for later learning and practice, the residency years are the time when physicians really learn to care for patients and to work with other members of the health care team. Too often, in the committee's experience, the residency years bring a negative image of dying patients and a neglect of excellence in end-of-life care. Illustrative of that problem is a quote from an editorial in the Journal for the National Cancer Institute, which noted (without critique) that "program directors acknowledge that critically ill patients, having few or no therapeutic alternatives, can have a negative impact on House Staff and students. They urged an exposure to outpatient oncology, where treatment successes are more frequently found" (cited in MacDonald, 1995, p. 278).
Depending on the field, the residency years repeat some of the challenges of the clerkship years. Some of the key issues are: (1) developing and sustaining productive, well-supervised experiences in nonhospital settings; (2) improving experience, including participation in interdisciplinary care that is guided and evaluated according to defined objectives; (3) balancing particular institutional needs for the provision of patient care services with the educational goals of the residency experience; and (4) providing experiences with the practical realities of cost-constrained medicine tempered by seminars and other opportunities to reflect on the ethical, professional, clinical, and other implications of these realities. Residency programs are also coping with the increased emphasis on primary care that has been reinforced by cost containment and care management strategies of managed care organizations. In general, primary care physicians will likely manage more complicated conditions (with fewer referrals to specialists); thus, they will need to be better prepared to care for patients with difficult medical problems and know when to refer them to others.
That medical students, interns, and residents learn from nurses and other professionals how to draw blood, give injections, and otherwise provide care is a staple of educational folk culture. Some of this learning makes up for correctable deficits in formal training, and some of it appropriately reflects the depth and breadth of expertise that professionals other than physicians have gained from their education and experience. Nurses, social workers, psychologists and others can do much to broaden what physicians understand about helping families, managing emotions, providing information and reassurance, and similar aspects of care. Physicians and physician educators will not uniformly be the best sources for this kind of learning.
Education about Death and Dying
Surveys dating back to the early 1970s indicate that attention to issues of death and dying is fairly limited in the undergraduate curriculum. A 1972 survey reported that about half of the responding schools had some kind of formal program (although what this meant is not well defined), most of which were less than five years old (cited in Mermann et al., 1991). A report on another survey in the same year concluded that the area "probably represents one of the greatest failures in professional education today" (Schoenberg and Carr quoted in Mermann et al., 1991, p. 35). A 1975 survey showed a higher percentage (87 percent) of schools with some formal activity on death and dying, but for 36 percent, this activity consisted of only one or two lectures (cited in Mermann et al., 1991). These surveys suffered from a variety of methodological difficulties, but the overall picture was clear. Care for those who are dying was not an educational priority and was, in fact, hardly perceptible as an issue.
Into the early 1990s, medical education on death and dying had not changed dramatically from the 1970s (Dickinson and Mermann, 1996; AMA, 1996b). In 1994, only 5 of 126 schools offered a separate, required course on end-of-life care, although 117 said they covered it as one topic in a broader course (Hill, 1995). Most schools (66) covered the topic in an elective course, but for 40 of these schools, the elective course also covered other subjects. Seventeen schools offered elective clerkships. In 1996, the number of schools with separate required courses stood at 6 with 120 including the topic as part of a broader course.
In contrast, a 1996 review of curricula in Canadian medical schools found that all 16 schools provided specific required time for palliative care education (MacDonald, submitted for publication). The mean lecture time was almost 5 hours with another 6 hours in small-group teaching sessions. Three schools offered over 15 hours in designated palliative care instruction with two (McGill and Memorial) offering over 20 hours. Four schools, however, provided less than 5 hours. Six of the schools supported one or
more full-time equivalent faculty positions (led by the University of Alberta and the University of Ottawa with six full-time faculty). A study from the United Kingdom reported a mean of 7 hours of curriculum time for palliative care (Scott and MacDonald, 1997; see also Thorpe, 1991).
In a U.S. survey that focused on student reports of their clinical training, all of the responding third-year medical students reported that they had cared for a dying patient, but 41 percent had never heard a physician talking with a dying patient, 35 percent had never discussed care for dying patients with an attending physician, and the great majority had never been present when a surgeon told a family that a patient had died (Rappaport and Witzke, 1993). Almost half of the students could not remember any consideration of death and dying in the curriculum.
At the residency program level, 1,200 residents in 55 representative internal medicine training programs were surveyed as part of an ABIM project on end-of-life patient care. "Preliminary results of this survey indicate that residents have significant difficulty in caring for patients near the end of life and conservatively rate their competency in medical knowledge, symptom and pain control assessment and management, and use of the team approach." (Blank, 1996b, p. 2). A survey by DiMaggio (1993) of psychiatric residency programs found that 56 percent of responding program directors reported that their programs offered some didactic coverage of the topic; of the residents responding, 26 percent reported participation in such lectures. As yet unpublished research based on focus groups and surveys in a number of medical schools presents similar reports of educational gaps and student or resident discomfort, uncertainty, and avoidance (Rappaport et al., 1991; Block, 1997).
The failure of residency programs to sufficiently train new physicians in care at the end of life is due, in part, to the failure of the various specialties and subspecialties to require such training. Some examples from a recent analysis of program requirements illustrate the situation (Steel, 1996). In the anesthesiology requirements, no mention of pain management is included for anesthesiology critical care. Family practice residency requirements also fail to cover pain control, and the discussion of death and dying mentions the family but not the patient. General internal medicine requirements encourage, but do not require, hospital-affiliated nursing homes and hospice programs as sites for residency training; the curriculum section does not mention pain or other symptom management. The requirements for the subspecialty of oncology do not specifically mention hospice resources.
Directions for Improvement
Fortunately, many of the proposed and partly implemented reforms in
undergraduate and graduate medical education lend themselves to the incorporation of knowledge or skills relevant for end-of-life care, even if the reforms may be motivated by other concerns. For example, the case-based approach of problem-based learning can readily accommodate cases that involve dying patients or patients likely to die. Such cases can present a range of important scientific, clinical, and behavioral questions for students, many of which can be generalized to other situations.
Ethics seminars likewise provide a natural place for many difficult issues to be discussed. Indeed, their development was partly stimulated by a desire to help medical students learn to grapple with difficult "life-and-death issues." Although the committee was not aware of any systematic data on the content of ethics seminars or courses, committee experience and familiarity with course materials in a number of institutions suggested that fairly standard topics related to end-of-life care include: advance directives, informed consent, truth-telling, the principle of double-effect (i.e., that treatment to relieve distress may, as a secondary but acceptable effect, hasten death), decisions about withdrawing or not initiating certain treatments, physician-assisted suicide, and costs or resource allocation. These are important topics but cannot substitute for basic scientific and clinical knowledge about symptoms mechanisms, prevention, and relief.
From the humanities comes a different kind of contribution to the education of health professionals. In particular, fictional and true personal narratives are employed to balance, at least in part, the highly scientific and technological orientation of medical education with a fuller understanding of serious illness and the value of attentive and compassionate caring for patients and those close to them (Hunter, 1994). Literature helps students and established professionals to understand values, customs, and ethics; develop empathy and perspective; find meaning in the lives of dying patients and the experiences of caring for them; and renew and restore their spirit for a workday world often filled with distress and even tragedy (Charon et al., 1995; Hunter, Charon, and Coulehan, 1995).
One challenge in improving graduate medical education is the large number and diversity of residency experiences. Today, for example, many residents may train in institutions without strong palliative care services and consultative resources.
In this environment, formal residency requirements involving end-of-life care may be a necessary—albeit not sufficient—stimulus to change. The benefits of such changes would, of course, extend beyond the residency institution's patients.
The Oxford Textbook of Palliative Medicine (Doyle et al., 1993) offers general guidance on how to coordinate improved education in palliative care with other educational reforms. It suggests
- seeking to incorporate the knowledge base and concepts of palliative care in many places in the curriculum rather than trying to capture more designated courses or hours;
- helping those from other disciplines recognize opportunities to raise end-of-life issues;
- suggesting to these colleagues informative and interesting cases and other teaching materials for didactic courses, small-group learning, and other experiences;
- providing faculty role models who will inspire emulation;
- offering the best elective seminar, rotation, or other experience in the curriculum;
- capitalizing on self-paced modes of instruction, including computer programs and video materials; and
- including topics related to end-of-life care in student evaluations.
In general, educational innovations involve a mix of strategies, tools, topics, and formats. Some are most suitable for undergraduate programs and others are suitable for graduate programs; some may be woven equally well into parts of both. Schools do not have to build such a curriculum on their own. They can take advantage of general curricula designs, teaching materials, and guidance developed by others. More such material should be available in the future, in part because foundations and private organizations are sponsoring a number of initiatives intended to improve education and training in end-of-life care (see Appendix C). The array of educational strategies and tools includes the following:
- Role models. One argument offered by those who support the creation of a palliative care specialty is that students need role models who are skilled in all aspects of palliative care (Calman, 1988; MacDonald, 1993). As discussed further below, experienced, multidisciplinary consulting teams provide such role models, in addition to the important clinical and other expertise and instruction they may contribute to the care of patients with difficult problems. More generally, the effort to identify and create role models should extend to any facet of medical education and practice (e.g., primary care, emergency care, pediatrics, and cardiology) that touches people with life-threatening illness.
- Patients as teachers. Mermann et al. (1991) have discussed a course for first- and second-year students at Yale University Medical School that utilizes the authoritative voice and experience of very sick patients to describe their experiences with physicians and to inform students of what it is like to have a life-threatening illness. Each student is matched with a patient who has volunteered to be interviewed and to discuss his or her circumstances, feelings, questions, and concerns over a period of months. This
- interaction is accompanied by assigned readings, faculty-led discussion, and a videotaping and discussion of students interviewing the patients.
- Experience in following a number of patients with advanced illness and their families through the progression of the illness and seeing a palliative consultative service in action. The idea here is similar to the approach taken in obstetrics training of requiring that students follow particular pregnant patients through delivery. The objective is not only to increase cognitive knowledge about the dying process but to encourage a better practical appreciation of the issues in planning and managing care through the course of a patient's dying and to achieve a fuller awareness of the patient's and family's experience and concerns.
Exposure to patient and clinician narratives, literature, and structured opportunities for personal reflection. Just as the use of clinical teaching cases adds clinical richness and individual complexity to medical education, the use of personal narratives and literature provides compelling insights into the personal significance and interpersonal experience of caring for dying patients and those close to them and the ways in which a loved one's dying can bring richness and meaning to others as well as loss and grief. In addition to reading and writing personal narratives, students can also be prepared in advance to reflect on their experiences—for example, the first death they see as a student, the first time they witness a patient or family learning of incurable illness, or the first patient in their care who dies (Solomon, 1997). As described in the introduction to a series of personal narratives about dying and death, real stories present not only clinical and scientific medicine but "the sometimes misplaced art of medicine" (ABIM, 1996b, p. i). For example,
Dr. S. and I had several discussions about where he wanted to die … it was clear to him that the young doctors in training did not really know how to care for a dying patient. He decided that when his time was close, he would enter the hospital and teach them whatever he could. And he did … teaching the house staff gently to respect his decisions and his view of the relation of death to life" (Surks, 1996, pp 5–6).
Mr. E. had recurrent angina pectoris intractable to medical management.… It had become common for the medical residents and cardiology fellows to avoid picking up his chart. After all, he was 'beyond therapy' and they felt uncomfortable with him … I asked him what his interests were. … As he talked about the books he had read … for the first time since I had known him he actually smiled and even laughed. It was obvious that there was effective therapy beyond medication … that had not been employed.… After exploring with him ways in which he could further his interest in ancient history … I made a pact with him … that unless there was some compelling reason to admit him to the hospital, I would treat him as an outpatient" (Cheitlin, 1996, p. 7).
- Role playing. Role playing is increasingly a part of educational curricula. For example, Tolle et al. (1989) have described role-playing sessions for residents that involve facilitators, students playing the role of a resident notifying survivors of a patient's death, and local hospice volunteers playing survivors of a patient who has died. The organizers stressed what they consider success factors for the program (which got a near 100 percent approval rating from residents): (1) scheduling the program during orientation when residents are not yet stressed with clinical work, (2) scripting the sessions to be clinically relevant, and (3) the intrinsic power of realistic simulations of an emotionally significant event.
- Morbidity/mortality conferences, morning reports, and attending rounds. Integrating a discussion of end-of-life issues in the day-to-day process of residency training is essential to develop and reinforce appropriate behaviors and skills (Clark, 1996). Attending physicians can be encouraged to probe students about strategies for symptom assessment and management and their effectiveness, to ask whether advanced directives or other advanced planning discussions are documented in a patient's record, to explore concerns in communicating with patients and families, and to invite students to examine and reflect on their personal responses to being with seriously ill and possibly dying patients. Because most faculty were not exposed to such discussion during their own training, incorporating it now may require major efforts in faculty development.
- Simulated patients. Experiences with simulated patients are intended to give students greater exposure to patient problems and to develop diagnostic and treatment management skills without prematurely exposing patients to inexperienced learners.4 Although not suitable for many kinds of clinical problems or topics, they may be useful in helping beginning students and even advanced students or established clinicians learn about end-of-life care.
- Hospice rotation. Hospice rotations can involve either community-based or inpatient programs, although the latter tend to be more easily arranged (Knight et al., 1992). Gomez describes the development of a model inpatient hospice and palliative care program that was intended both to improve care for dying patients and to serve as a training site for internal medicine residents, medical students, and nurses (Gomez, 1996). The program was separated from acute care units and linked to a well-established community hospice, which provided residents the opportunity to follow
- patients in other settings. The benefits of this program for residents are that it allows them to increase their technical knowledge and skills, to experience an alternative model of care focusing on patient-reported symptoms and their meticulous management, and to work closely with a diverse health care team. Ideally, the involvement of medical educators in the creation of appropriate hospice experiences for students and residents would also have a positive impact on efforts to encourage excellent symptom management and timely referrals to hospice.
- Intensive care. Intensive care units can also provide experience with supportive care. As described in Chapter 4, an academic health center that served mainly as an emergency and trauma facility established a supportive care team (a clinical nurse specialist and a small rotating group of physicians) for those for whom curative, rehabilitative, or life-extending care was hopeless (Carlson et al., 1988). In addition to improving end-of-life care for these patients, the program provides residents, students, and faculty with a variety of direct educational opportunities in an acute care setting.
- Practice guidelines, decision support systems, and symptom assessment tools. Chapter 5 discussed various strategies and tools for improving the quality of end-of-life care. These include evidence-based guidelines for pain management and other symptoms, decision support systems, and health status assessment tools. These strategies may be particularly valuable and reassuring to physicians in training (IOM, 1992).
- Teaching materials. The American Board of Internal Medicine (ABIM) has distributed curriculum materials, including a set of personal narratives by physicians and a video (produced by others) to over 2,000 internal medicine programs in the United States. Several projects supported by the Project on Death in America will develop curriculum materials (see Appendix C). Individual faculty and institutions are also developing and sharing materials through a variety of personal and professional networks. Appendix H includes outlines for two examples of medical educational curricula on palliative care. The first was developed by the Canadian Committee on Palliative Care Education. The second was developed at Harvard University. It is important that palliative care experts work with textbook authors and publishers to incorporate material on end-stage disease and symptom management in future editions and to develop supplementary readings or other materials for existing texts. Meeting this goal will take time, but publishers are sensitive to their customers and to public pressure as indicated by increased recognition of women and minorities, regard for patient worries and preferences, concern for prevention, and consideration of issues such as drug abuse and domestic violence.
In addition to considering the place of individual educational strategies, this report encourages each medical school and residency program to work
with others in the health professions, the university, and the community to develop an explicit statement on palliative care training for faculty, students, administrators, and others. The statement should
- recognize that medical students and residents need education and training in the effective and humane care of patients approaching death;
- define required and elective curriculum elements for such education and training including lectures, seminars, cases, clerkships, experiences, teaching methods, evaluation techniques, and personnel; and
- specify the scientific, clinical, interpersonal, ethical, cultural, and organizational aspects of care to be covered; and
- identify how the curriculum elements will contribute to student preparation for care of dying patients.
The last point underscores that the concern should not be narrowly with curriculum change but, more broadly, on evaluating the impact of educational strategies on practice and outcomes. As noted above, the committee understood that change is not cost-free and that educational resources need to be used wisely.
Incentives and Levers for Change
The incentives and levers for strengthening education in end-of-life care are varied. In addition to various forms of persuasive argument, a number of other, potentially more compelling means exist to secure change in medical education. Within the medical school curriculum, examination questions on symptom pathophysiology and management and other palliative care topics can focus student and faculty attention. Nationally, inclusion of such questions in licensure and board examinations would, in particular, signal the importance of the subject. The American Board of Hospice and Palliative Medicine has developed a certification examination in hospice and palliative medicine. For graduate medical education, residency program requirements and accreditation are potent means of directing attention to an issue.
For each specialty, residency review committees (RRCs) oversee the process of establishing and reviewing program requirements. The process for changing the requirements takes at least three years and more commonly lasts four or five years. As described by the ABIM, it "involves getting the language in, getting the word out to the many specialty RRCs and other professional societies and groups that are asked to comment, getting the impact statement completed to justify any new changes, and then getting the new requirements through the Accreditation Council for Graduate Medical Education for approval. From that point, the effective
date for implementation is nine months to one year" (Blank, 1996b, p. 2). The lead time to get organized for the RRC process adds additional time. In sum, this approach is not quick—and appropriately so, given the significant economic and other effects on programs.
The importance of knowledge and skills in end-of-life care would be underscored if each RRC examined its specialty and subspecialty requirements to establish deficiencies and areas for improvement. As reported earlier in this chapter, a preliminary examination of requirements in several specialties suggested important gaps. Once program committees recognize that program requirements need revision, the design of those revisions would involve individual and cooperative efforts to (1) specify core competencies and formal program requirements and (2) identify how these competencies and requirements will contribute to resident preparation to care for dying patients. Changes in residency program requirements will be most effective if implemented in conjunction with changes in licensure and board examinations. Following is a discussion of whether a palliative care specialty may be necessary to provide the effort and commitment that change frequently requires.
Palliative Care as a Specialty
The criticisms of medical education and the options for improving it imply the commitment of significant energy and resources to establish objectives, correct deficiencies, design and implement innovative programs, and develop means for evaluating progress and improving programs on an ongoing basis. Given all the challenges facing medical schools, academic health centers, and universities, the sustained availability of such energy and resources can hardly be taken for granted in either the short- or the long-term. Much the same can be said about the commitment of resources in health care research, team management and participation, and other activities in an era characterized by increasingly stringent cost controls.
One strategy for drawing attention to the field of palliative care and increasing its stature in medical education and medical practice is to seek its designation as a recognized medical specialty. The United Kingdom recognized palliative medicine as a specialty in 1987, followed by Australia and New Zealand. In Canada, after some initial reluctance to pursue this strategy, an effort to win specialty recognition is under way (MacDonald, 1996). The goal is not to establish an independent field of practice like cardiology or radiology but to develop a stronger base in education and research and to provide integrated care and consulting resources for primary care physicians and specialists in other fields.
Although expertise in palliative care is not a prerequisite for deans, department chairs, individual faculty, and others to press for better educa-
tion in end-of-life care, the presence of those with such expertise provides a critical reservoir of knowledge, experience, and commitment that makes it more likely that such efforts will succeed. The group of practitioners, educators, and researchers trained and experienced in palliative care is, however, fairly small and their responsibilities are quite diverse, including
- serving as consultants and role models for colleagues, students, and other members of the health care team;
- developing both scientifically based and practically useful curricula, instructional material, and other tools that furnish students and new and established practitioners with relevant knowledge, skills, and practices; and
- organizing and conducting research to extend biomedical, clinical, behavioral, and other knowledge.
In the United States, the American Board of Medical Specialties (ABMS) recognizes 24 medical specialties and approves the recognition by these boards of subspecialties.5 Growing concern about the increasing fragmentation of medical care and its clinical, political, and economic risks has led the ABMS to establish stricter criteria for specialty recognition and to be very sparing in their application. Individual boards, such as the ABIM, have criteria for designating subspecialties. In addition to full specialty or subspecialty recognition (the latter through certificates of special competence), boards may establish certificates of added qualifications subject to approval by the ABMS.
The advantages of specialty status have been numerous, including professional stature, visibility, and power in the contest for academic resources (e.g., courses, faculty positions, residency slots), and recognition by hospitals and other organizations that credential professionals (e.g., grant hospital privileges, offer health plan contracts).6 The case for seeking specialty recognition for palliative care has been forcefully argued in the United Kingdom, Australia, and Canada. Some groups testifying to the committee at its April 1996 public meeting noted possible benefits of a formal specialty without necessarily endorsing the step (Byock, 1996; Calder, 1996; Mahoney, 1996). The arguments for establishing a formal specialty are that it would
- focus attention more powerfully on an existing knowledge base that is both insufficiently understood and inadequately applied and that is in need of further growth;
- recognize more explicitly and publicly that palliative care is an appropriate goal of medicine;
- conform to the value and recognition structure of medical professionals—providing credibility with peers (and perhaps patients and others) as a source of knowledge, guidance, and referral;
- attract leaders to the field; and
- nurture the development of the field and its knowledge base.
As suggested above, calls for the creation of new specialties are today greeted with considerable skepticism and reserve. Several groups testifying to the committee were mildly to strongly negative about a formal palliative care specialty (Bagley, 1996; Blank, 1996b; Felder, 1996; Viste, 1996; Volicer, 1996). The arguments against a new specialty are that it would
- imply that other specialties/health professionals need not be very concerned with prevention and relief of pain and other distress at the end of life;
- increase fragmentation of care for those with severe chronic or terminal conditions;
- demand more faculty resources during a period when faculty energies may already be approaching exhaustion;
- be confusing (i.e., create uncertainty about who should care for those severely ill but not clearly dying);
- be vulnerable to disproportionate influence by cancer care models/personnel;
- be difficult to win acceptance in managed care environments where there is more emphasis on primary care practitioners;
- be politically suspect given concerns about oversupply of specialists and uncertainties about resources for medical schools and academic medical centers; and
- divert resources from existing specialties, many of which feel under siege from health care restructuring.
Formal specialty status is not the only way to expand the core of palliative care experts. By creating professional societies (e.g., the American Academy of Hospice and Palliative Medicine), establishing journals (e.g., the Journal of Pain and Symptom Management), organizing meetings and conferences, and establishing academic centers, experts in palliative care already are directing more attention to practice, research, and education in the field. Indeed, the ABIM essentially demands that such steps precede
specialty recognition. The ABIM's criteria for certification of special competence are that a discipline must: have a distinct and unique body of knowledge; have clinical applicability sufficient to support a distinct clinical practice; contribute to the scholarly generation of new information and advance research in the field; have a minimum training period of 12 months; meet numerical standards for training programs, trainees, and practicing diplomats to demonstrate maturation of the discipline; and have positive value that outweighs the negative impact of certification on the field of general internal medicine or its existing subspecialties. It is not clear at this time that palliative medicine in the United States would meet all the conditions related to training programs.
The committee was initially reluctant to endorse the creation of another medical specialty for the reasons cited above. After its months of examination of the problems in care at the end of life, it concluded that the needs are so great that palliative care should become established, if not as a recognized medical specialty, then as a defined and accepted area of teaching, research, and patient care expertise.
Nursing, Social Work, and Other Professions
Other professions, including nursing, social work, dentistry, pharmacy, physical therapy, nutrition, and pastoral counseling have not been as severely criticized as medicine for inattention to care at the end of life. In some cases such as dentistry, this may be because their direct contribution to the care of dying patients is seen as fairly limited. In other cases such as social work and nursing, educators and practitioners may be spared some criticism because caring is so central to their training and practice.
Because each health profession faces somewhat different tasks and issues in care for those who are dying, their professional education and training should reflect these differences. It is the sense of the committee that professionals whose expertise and skills are drawn on in care for dying patients would generally welcome opportunities to broaden their professional horizons, to examine how their knowledge and skills may be strengthened to more fully meet the needs of dying patients and their families, and to participate in the training and development of other health professionals. The committee encourages leaders in these other fields to take steps in this direction. The discussion below considers the fields of nursing and social work, both of which have central places in the multidisciplinary care of dying patients and those close to them.
Although spared some criticism, nursing education also can be faulted
for insufficiently preparing nurses to understand the physical, emotional, and spiritual needs of dying patients and their families and for failing to fully equip them to apply existing clinical knowledge and standards effectively in responding to these needs. Such critiques deserve the most careful attention by that group of professionals that Florence Nightingale defined as having special responsibility for "care of the personal health of somebody" and for seeking "to put the patient in the best condition for nature to act upon him" (Nightingale, 1859). Virginia Henderson defined the purpose of nursing as "to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery, or to a peaceful death, that he would perform unaided if he had the necessary strength, will, or knowledge" (Henderson, 1961). In 1980, nursing was defined as "the diagnosis and treatment of human responses to actual or potential health problems" (ANA, 1980). These definitions illustrate the consistent orientation of nurses to providing care for the patient's well-being, regardless of the patient's diagnosis or prognosis.
The knowledge base for nursing is derived from multiple sources, including nursing science; philosophy; ethics; and physical, biomedical, social, behavioral, and economic sciences (IOM, 1983; ANA, 1995). In the last 20 years, nursing philosophy and practice have been influenced by the science of caring. Contemporary nursing practice consists of four essential features:
- "attention to the full range of human experiences and responses to health and illness without restriction to a problem-focused orientation;
- integration of objective data with knowledge gained from an understanding of the patient or group's subjective experience;
- application of scientific knowledge to the processes of diagnosis and treatment; and
- provision of a caring relationship that facilitates health and healing" (ANA, 1995).
This holistic approach to the care of all patients covers each of the dimensions of care identified in Chapter 3: physical, emotional, spiritual, and practical. Nurses are expected to have sufficient knowledge to care for patients during all life stages, including dying.
Although professional nurses, and ultimately their patients, would benefit from nurses' participation in explicit coursework about care at the end of life, attention to this topic appears to vary substantially across schools of nursing (ANA, 1996). Variation exists in the availability of courses, their content, the degree to which end-of-life issues are integrated into basic nursing coursework, and the preparation of the faculty. Some topics related to critical care, pain management, pediatrics, and other specialized areas
may be concentrated in advanced curricula, but general nursing curricula should address differences in dying patients related to clinical condition, family circumstances, mental status, and other factors that may call for different nursing strategies.
Corner (1993) identified four career stages—nurse student, new graduate, experienced nurse, and advanced professional—that should be considered in developing educational programs to improve care for dying patients. For the last three categories, continuing education is needed to accommodate technological developments, career shifts, and changing ethical or legal positions. Moreover, to the extent that cost pressures on hospitals and nursing homes continue to reduce the presence of professional nurses, the training and supervision of lower-level personnel who provide nursing care becomes an increasing concern (IOM, 1996c).
Studies of nursing curricula are limited but suggest that nursing students may get little supervised experience with dying patients, minimal guidance in handling their personal reactions to dying patients and grieving families, and little education about symptom assessment (see, e.g., Degner et al., 1991; Frommelt, 1991; Corner, 1993; Coolican et al., 1994; Kingma, 1994; Ross and MacDonald, 1994; Dukes et al., 1995). One theme in critiques of nursing education in end-of-life care is the need for updating the curriculum. For example, nursing programs have been criticized for using outdated models of death education (Coolican et al., 1994; Kingma, 1994). A Canadian review argued that educators need to pay more attention to the problems that nurses face in caring for patients dying at home—keeping current, being isolated, dealing with bureaucracies, and working collaboratively (Ross and MacDonald, 1994).
Improvements in the preparation of nurses can—with modifications appropriate to the objectives, knowledge bases, and formats of nursing education—follow many of the same paths identified for medical educators. That is, clinical knowledge, interpersonal skills, ethical awareness, and other aspects of effective care for dying patients can often be integrated and coordinated with case-based learning, role playing, experiences in different sites, and similar elements that are commonly included in general curriculum reform initiatives.
One of the most difficult problems that nurses face is dealing with patients and families that are being neglected or inappropriately managed by physicians. To the extent that physician education and practice shifts toward a more collaborative approach, nurses will be in a better position to apply their skills and understandings to improve what physicians learn and how they care for patients. To take advantage of such shifts and encourage them, it makes good strategic sense for nurses and nurse educators to promote collaborative educational and training experiences in medical schools, residency programs, and physician continuing education activities.
Social Work Education
Social workers have been described as the hub of interdisciplinary efforts to provide comprehensive medical and support services to patients facing death (Blackman, 1995a). As the health care professionals who focus solely on the psychosocial aspects of death and dying, they consider patient and family adjustment to life-threatening illness and offer them help in making decisions about treatment and obtaining resources that will support the best quality of life possible for dying patients and those close to them. As more care has shifted from institutional settings to homes and as survival with serious illness is extended, social workers have helped to coordinate an increasingly broad range of services to people and families coping with complex medical regimens and periodic physical or emotional crises (Sheldon, 1993; Loscalzo and Zabora, 1996).
Psychological screening, assessment, counseling, referral, and practical assistance with financial and other problems are key responsibilities for social workers. Their role clearly focuses on some of the problems—such as caring for the family and collaborative care—that physicians and, to a lesser extent, nurses have been criticized for neglecting. For cancer patients and their families in the United States, about 75 percent of their supportive counseling is provided by social workers (Coluzzi et al., 1995). Social work is often organized around a model that identifies the social and psychological tasks that patients and families confront at the end of life. Social workers should be educated and trained to help with such difficult tasks as:
- maintaining a meaningful quality of life during illness and the approach of death;
- coping with disfigurement and loss of function;
- confronting existential and spiritual questions;
- making decisions about end-of-life care; and
- planning for survivors' lives after the loss of their loved one.
Social workers are trained in baccalaureate and graduate programs, some of which focus on the health field, others of which are more general. Clinical social workers—who counsel individuals and have graduate degrees—must be licensed by the state. Although they do not provide medical services, social workers in the health care arena need a sound understanding of the medical problems their patients are facing. Some professional organizations, social service agencies, universities, and other organizations sponsor a broad range of continuing education and multidisciplinary training opportunities for social workers.
Nonetheless, specialized course work that focuses on the dying process, bereavement, ethical and legal considerations, and related end-of-life
issues appears to be quite limited. Also, as is true for other health professionals, social workers who want to improve their skills in end-of-life care face a dearth of postgraduate training opportunities.
For social workers, like nurses, collaborative educational and training experiences in conjunction with medical schools, residency programs, and physician continuing education activities may help all participants improve their competency in the psychosocial dimensions of care at the end of life and their ability to participate effectively in multidisciplinary patient care. Such specialized, multidisciplinary training is not widely available. This undoubtedly reflects the traditional avoidance in health professions education of emotional reactions, spiritual concerns, bereavement, and other issues for which scientific knowledge, operational concepts and terms of references, and testable hypotheses have been scarce. As education and research agendas change, social workers and other health professionals will benefit from greater scientific understanding in these areas.
Even for social workers who do not specialize in health care, encounters with dying and death are not uncommon but training to deal with these complex, highly charged situations is limited. A few examples of such situations include: domestic violence, community violence, substance abuse, homelessness, and natural disasters (e.g., earthquakes, floods). Social work training tends to focus on clinical approaches to crisis support and intervention rather than on the longer-term emotional aspects of dying, death, and bereavement in these contexts.
Social worker's training should also prepare them to help family caregivers and survivors, an often forgotten group. Spouses, parents, and children (especially wives, mothers, and daughters) are often primary caregivers for people dying over periods of months and even years. For nontraditional families, support for caregivers in this context may be particularly demanding. Death marks an end and a beginning for families and friends, who both mourn their loss and face the often difficult process of reconstructing life on terms very different from before.
Continuing Professional Education
Learning is a lifelong process for medical and other professionals in health care. Health professions education may thus be seen as a continuum in which the professional degree marks the midpoint and in which education and reeducation continue "until the professional life of the practitioner is finished" (Coggeshall, 1965, pp. 39–40). To the extent that health professions schools and residency programs strengthen the attention to end-of-life care in undergraduate and graduate programs, the foundation for continuing education programs should likewise be strengthened.
The basic options for continuing education programs to improve how
health professionals care for those approaching death are mostly familiar ones. They include consultation, clinical demonstration, lectures and rounds, courses and conferences, journals, self-learning programs, and reflective practice (Scott and MacDonald, 1997). The last item—reflective practice—draws from academic nursing the concept of learning through reflection (see, e.g., Atkins and Murphy, 1993). Such learning may involve chart reviews, practice audits, patient feedback, and interactive consultations and may be incorporated in processes of continuous quality improvement discussed in Chapter 5.
General strategies for lifelong learning are changing as university-based and other video conference capacities expand and as the Internet and similar electronic media make resources for self-learning more sophisticated and far-reaching. Distance learning options in palliative care have already been developed in Australia (cited in Scott and MacDonald, 1997).
In general, research on the effectiveness of continuing education programs in influencing attitudes, extending knowledge, or enhancing technical skills is limited, and relatively little relates to care for dying patients. Multidisciplinary continuing education—designed to reflect model end-of-life care—may not attract those with the physician's traditional distrust of such education (Scott and MacDonald, 1997). A survey of general practitioners in one English community suggested another possible problem when it found that the majority of those responding favored didactic education in end-of-life care and expressed discomfort about the prospect of experiential education (MacLeod and Nash, 1991). Further, if educational programs do not suggest how new knowledge or skills can be put to immediate use, they may also fail to attract participants.
As mentioned in Chapter 1 and described further in Appendix C, established physicians are the focus of the education initiative being undertaken by the American Medical Association with the participation of many other groups. This initiative recognizes the difficulties of changing the culture of medicine but argues that it can be successfully altered without challenging it in a confrontational and accusatory fashion. Instead, it will concentrate on supportive training of established physicians including preparing them to go back to their communities to train others.
On the basis of its experience, literature review, public meetings, and other sources, the committee agreed that the criticisms of medical school education in end-of-life care are merited. Dying is too important a part of life to be left to one or two required lectures or to be set aside on grounds that medical educators are already swamped with competing demands for time and resources. Moreover, educators and clinicians should understand,
first, that end-of-life care is not just an ethics issue but a subject for scientific and clinical attention and, second, that it focuses not only on facts and technical skills but also on relationships and emotions, including those of the clinician.
Despite some increase in coverage of care for dying patients, it appears that relevant instruction, clinical experience, and assessments of student attitudes, knowledge, and skills are still limited, even as they pertain to patients who die in hospitals. Clinicians in training are not systematically prepared to assess the clinical and psychosocial factors that indicate what extent of curative, life-prolonging, and palliative care is appropriate for a patient or how it is to be initiated and managed through the course of illness. Attention to skills in communication and shared decisionmaking (including listening skills) remains a weakness. Students receive little interdisciplinary training and are not coached in using a team approach to caring for dying patients and their families. The potential for learning from the other health professions appears to be undervalued. Students are also not directed to explore and reconsider their own and their profession's attitudes toward death or to reflect on what constitutes a good death.
A number of models for curricula are available, including teaching cases and other materials, and more are being developed. Many involve objectives and methods that are consistent with widely endorsed steps designed to integrate scientific and clinical knowledge, improve problem-solving and interpersonal skills, and extend community-based learning. Thus, the effort implied by the committee's recommendations should not prove excessive, nor should the demand for new curriculum time be unreasonable. Moreover, the process of designing curriculum elements related to effective and compassionate care at the end of life is likely to prove helpful in refining and reinforcing other objectives and strategies related to improved interpersonal, teamwork, and reasoning skills. Nonetheless, focusing attention on end-of-life care also requires that the leverage points of professionalism—such as licensure examinations and residency requirements—be employed.
The committee believes that most of the goals of improved end-of-life care can be achieved by persistent pursuit of the other goals and strategies adopted by those committed to the field and by the adoption, by the appropriate parties, of other recommendations stated in this report. In the United States, professional, social, and perhaps political momentum for change has been created in the last three years, and it seems reasonable to allow its effects to be more fully felt. Seeking specialty status and maintaining the bureaucratic apparatus to sustain such status inevitably absorbs resources already in scarce supply. Nonetheless, to accomplish the goals for education, research, and improved care set forth in this report probably requires the equivalent of specially recognition.
In order to promote and monitor the initiatives already under way to improve health professionals' education and to consider what additional steps may need to be taken, the committee encourages the Institute of Medicine to organize, within the next one to three years, a symposium on the education of health professionals in care at the end of life. The objective would be to assess progress and identify directions for further efforts to ensure that physicians, nurses, social workers, and others have the attitudes, knowledge, and skills to care well for those approaching death.