Education of health professionals who provide care to people nearing the end of life has improved substantially in several areas since the Institute of Medicine (IOM) reports Approaching Death (IOM, 1997) and When Children Die (IOM, 2003) were published. Most notably, hospice and palliative medicine has become established as a defined medical specialty, with 10 cosponsoring certification boards. Despite this progress, however, major educational deficiencies remain with respect to end-of-life care.
This chapter begins by summarizing progress made in professional education with respect to end-of-life care since the above two IOM reports were issued, as well as deficiencies that remain. It then describes impediments to teaching all physicians and nurses about palliative care. Removing these impediments would enhance basic palliative care as provided by clinicians who are not hospice and palliative medicine specialists. Next, the chapter describes the roles and preparation of palliative care team members, including specialists in palliative care in the professions of medicine, nursing, social work, pharmacy, and chaplaincy; rehabilitation therapists and direct care workers are also discussed. The chapter ends with the committee’s findings, conclusions, and recommendation on creating change in professional education.
When Children Die recommends creating and testing end-of-life care curricula and educational experiences for all health care professionals who work with children and families, as well as specialty clinicians and palliative
care specialists (IOM, 2003). Approaching Death includes a recommendation to raise palliative medicine to specialty or near-specialty status. The report’s recommendation 5 says, in part, “Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research” (IOM, 1997, pp. 9, 12; see also pp. 224-227). This important recommendation has been realized with the board certification of thousands of hospice and palliative medicine specialists drawn from other disciplines. Palliative care specialties have been developed as well for advanced practice nurses and registered nurses. A palliative care specialty has emerged in social work, and another is under way in chaplaincy. Nearly 100 hospice and palliative medicine fellowship programs, with the capacity to graduate some 200 fellows annually, have gained accreditation. Similar gains have occurred in nursing and social work. Clinical experiences in hospital-based palliative care and outpatient hospice have become more widely available. Other areas of progress include the following:
- Faculty preparation—Increasing numbers of faculty members have palliative care credentials. Since Approaching Death was published, important efforts to train faculty have included the Faculty Scholars Program for physicians and nurses and the Social Work Leadership Development Awards, both initiatives of the Open Society Institute’s Project on Death in America (Open Society Institute, 2004). Such efforts have also included the End of Life/Palliative Education Resource Center (Medical College of Wisconsin, undated) and faculty recognition through the U.S. Department of Veterans Affairs (VA) Faculty Leader Project for Improved Care at the End of Life (Stevens et al., 1999). Two major ongoing continuing education programs—the Education in Palliative and End-of-life Care program and End-of-Life Nursing Education Consortium—together have trained thousands of physicians and nurses through a train-the-trainer approach.
- Medical education—Medical students today have greater exposure than before to end-of-life knowledge and skills in medical schools. Education in palliative care is offered in 99 percent of U.S. medical schools, usually as part of another course, and all medical schools offer some type of instruction on death and dying, although the average total instruction is a mere 17 hours in the 4-year curriculum (Dickinson, 2011). In a 2013 annual survey conducted by the Association of American Medical Colleges, nearly 80 percent of graduating medical students deemed the instruction they received
- in palliative care and pain management appropriate, and about 20 percent thought it inadequate (AAMC, 2013).1
- Professional infrastructure—As reflected in many of the sources cited in this report, important research on palliative care has been published in first-tier journals, and several new peer-reviewed journals on palliative care have been launched. Moreover, the number of active organizations dedicated to the advancement of palliative care, partly through the setting or promotion of standards, has grown and now includes the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the National Hospice and Palliative Care Organization (formerly the National Hospice Organization), the Hospice and Palliative Nurses Association, and the Social Work Hospice and Palliative Care Network.
- Knowledge base—Major gains have been made in the knowledge base of palliative care. These gains are evidenced in palliative care textbooks (e.g., in medicine, Hanks et al.  and Bruera et al. ; in nursing, Ferrell and Coyle ; and in pediatrics, Hinds et al. , Wolfe et al. , and Carter et al. ), as well as in increased palliative care content in nonspecialty texts.
Despite these gains, however, two important deficiencies persist. First, these knowledge gains have not necessarily been matched by the transfer of knowledge to most clinicians caring for people with advanced serious illnesses. As was true at the time Approaching Death was published in 1997, the topic of death and dying does not have a strong presence in the medical school curriculum. Similarly, in the care of very sick children, many family physicians, pediatricians, and their counterparts and colleagues in nursing and social work have developed an expertise in palliative care, but the overall pattern of inattention to palliative and end-of-life care observed in When Children Die still appears to predominate in the pediatric world. To illustrate, a 2003 survey of 49 pediatric residents at the Children’s Hospital of Pittsburgh found “minimal training, experience, knowledge, competence, and comfort in virtually all areas of palliative care for children,” with no significant improvement in any of these areas from the first to the third year of training (Kolarik et al., 2006, p. 1952). Other studies have also found that physicians and other health professionals continue to experience mini-
1By contrast, in an earlier telephone survey of 1,751 U.S. medical students and residents, two-fifths said they felt unprepared to address dying patients’ fears, to manage their own feelings about patients’ deaths or help bereaved families, and to teach end-of-life care, and nearly half said dying patients were not considered good teaching cases (Sullivan et al., 2003).
mal or no training in palliative care for the pediatric population (Liben et al., 2008; Rapoport et al., 2013; Serwint et al., 2006).
The second major remaining deficiency involves the limited number of palliative care specialists. As noted in a later section of this chapter, approximately 6,500 physicians are board certified in hospice and palliative medicine. In 2010, the national shortage in this specialty was estimated to be between 6,000 and 18,000 physicians (Lupu and American Academy of Hospice and Palliative Medicine Workforce Task Force, 2010). In one sense, this shortage estimate could be interpreted as too high because it was based on a supply of only 4,400 palliative care specialists and on a model of demand reflecting staffing levels at “exemplar” institutions.2 In another sense, the estimate could be interpreted as too low because it was not population based (or empirically determined). Moreover, it rested on an apparent assumption that people do not need, and present no demand for, specialty palliative care services outside of institutional settings.
However, many people outside of institutional settings do need what in this report is termed basic palliative care (see Box 1-2 in Chapter 1). Basic palliative care is vital because hospice and palliative medicine specialists will never be sufficient in number to provide regular face-to-face treatment of every person with an advanced serious illness. Hospice and palliative medicine specialists supplement, and do not replace, the palliative care services of clinicians in primary care and disease-oriented specialties.
I am a family physician who provides end-of-life care in a rural setting for patients, both at a nursing home and in their personal homes. As difficult as these situations can be, as medical providers we can provide a great deal of comfort walking patients and families through these end-of-life events by detailing how the events normally transpire. More important, though, is that we are able to provide mental and spiritual care for the patient and family. Once the patient and family realize they are in an end-of-life situation, they are almost always open to care options to help make the dying process meaningful and physically comfortable for the patient.*
2In the cited study, the “exemplar” institutions used in modeling demand included three hospices and one academic medical center, and the estimate was based on the Center to Advance Palliative Care’s recommended staffing level of one hospice and palliative medicine physician for every 12 patients (CAPC, 2014; Lupu and American Academy of Hospice and Palliative Medicine Workforce Task Force, 2010).
Domains of Clinical Competence in End-of-Life Care
Scientific and clinical knowledge and skills
- Symptom control and medication management
- Patient assessment and caregiver assessment
- Physical and emotional symptoms
- Advance care planning
Interpersonal skills and knowledge
- Respecting patient and family choices (overlap with ethics)
Ethical and professional principles
- Doing good
- Avoiding harm
- Respecting patient and family choices (overlap with interpersonal skills)
- How the clinician interacts with the system
Approaching Death (IOM, 1997) and When Children Die (IOM, 2003) specify the same four domains of clinical competency in palliative care: scientific and clinical knowledge; interpersonal skills and knowledge, ethical and professional principles, and organizational skills. These domains are as relevant today as they were when those earlier reports were produced. Box 4-1 summarizes these domains.
Health professions education can help transform the care of people with advanced serious illnesses. Indeed, far-reaching changes in how physicians, nurses, and other health professionals are educated and trained may be necessary to effect that transformation.
In the committee’s judgment, three impediments in health professions education and development have obstructed coordination, compassion, and choice in end-of-life care. Interacting with each other, these impediments reinforce a general inadequacy in preparing physicians, nurses, and other health professionals to provide basic palliative care, and overcoming them
would greatly improve the palliative care landscape. The three impediments are as follows:
- Curriculum deficits: The usual curricula of medical and nursing schools contain too little content on palliative care. Many physicians and nurses have entered practice with only a limited understanding of palliative care and generally are ill equipped to meet patients’ basic palliative care needs.
- Lack of interprofessional collaboration: Education for medical professionals takes a generally siloed approach, whereas palliative care requires an interdisciplinary, team-based approach. Having been educated separately, physicians, nurses, and other health professionals have not had the opportunity to develop teamwork skills and attitudes.
- Neglect of communication skills: Communication skills are neglected in both the undergraduate (medical school) and graduate (internships, residencies, and fellowships) education of physicians, as well as in the preparation of nurses and other health professionals.
Undergraduate and Graduate Medical Education
In a major advance, the Liaison Committee on Medical Education now requires accredited U.S. and Canadian medical schools to teach end-of-life care.3 To the extent that this policy is carried out, nearly all future physicians will be at least somewhat prepared to practice basic palliative care. However, the Liaison Committee’s requirement is vague—it does not specifically mention palliative care, for example—and it does not appear to be rigorously enforced through specific standards or clear expectations. Perhaps partly as a consequence, end-of-life care, including principles and practices of palliative care and hospice and palliative medicine, still is not taught widely and intensively in U.S. medical schools.
As noted above, palliative care usually is offered only as part of another course. In a 2008 survey on palliative care in 128 U.S. medical schools, only 47 responded, and just 14 of these had a required course (Van Aalst-Cohen et al., 2008). A recent review found an “absence of sufficient formal classroom and clinical instruction” in palliative care and concluded that most
3Liaison Committee on Medical Education standard ED-13 states, in full: “The curriculum of a medical education program must cover all organ systems, and include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care” (Liaison Committee on Medical Education, 2013, p. 10). This policy was initiated in 2000.
medical students learn about the subject largely informally, through “the ‘hidden’ curriculum.”4 In these authors’ view, this hidden content often presents negative messages, such as “death is a medical failure,” and there is no reason to assign students to dying patients because there is “nothing to learn” from them (Horowitz et al., 2014, p. 63).
When palliative care is taught, results can be impressive. A review of nine studies published in 1996-2006 found “a wide range of format structures and curriculum content,” but the author notes that all of the studies “demonstrate that end-of-life educational curricula and clinical training improve the competency of medical students” (Bickel-Swenson, 2007, pp. 233-234). A qualitative assessment of the reflective written comments of 593 third-year medical students before and after taking a 32-hour didactic and experiential clerkship that included home hospice visits and inpatient hospice care found a 23 percent improvement in knowledge, a 56 percent improvement in students’ feelings of competence, and a 29 percent decrease in their concerns (von Gunten et al., 2012).
Other examples of how hospice and palliative medicine content has been incorporated into medical school curricula include
- George Washington University’s standardized patient case on palliative care in the second year, coupled with a course on medical interviewing and decision making;
- the University of Rochester’s content on advance care planning, chronic pain management, and discussion of treatment goals provided in the first and second years, supplemented by a session on palliative care in a 2-week follow-up to a clinical rotation in the third year (Shaw, 2012);
- development of a 4-year integrated curriculum and establishment of an Office of Palliative Care by Northeast Ohio Medical University (Radwany et al., 2011); and
- the Association of American Medical Colleges’ collaboration with the Coalition to Transform Advanced Care to identify relevant core competencies.5
4The “hidden curriculum” is expressed through institutional policies, evaluation activities, resource allocations, and institutional “slang,” among other means (Hafferty, 1998). For further discussion and a personal view, see Liao (2014).
5Core competencies in geriatric education, identified by the Association of American Medical Colleges with support from the John A. Hartford Foundation, include some aspects of hospice and palliative medicine: pain management; the importance of interdisciplinary care; and psychological, social, and spiritual needs of patients with advanced serious illness and their families (Leipzig et al., 2009; see also Sanchez-Reilly and Ross, 2012, p. 118).
The need for a systematic approach to medical schools’ commitment to hospice and palliative medicine has been described as follows:
An educationally rich palliative care curriculum should include didactic and clinical experiences where learners observe the role-modeling of competent and compassionate palliative care and have supervised experiential opportunities. Improvements within individual schools/residencies still largely rely on the presence of an effective palliative medicine champion who combines commitment and vision, leadership skills, education skills, and clinical skills. To provide meaningful clinical experiences for learners and to mainstream palliative medicine[,] it is crucial to provide faculty development in primary palliative care skills to non-HPM faculty to ensure care for the growing population of complex chronically and seriously ill people. (Sanchez-Reilly and Ross, 2012, p. 120)
The structures of academic medical centers and cancer centers typically are rooted in more established specialties, impeding the ability of hospice and palliative medicine specialists to become educators. These structures also fail to facilitate interprofessional training. What appears to be needed is a core of board-certified hospice and palliative medicine specialists serving in appropriate departments or divisions as educators of medical students and residents and as liaisons with colleagues in other professions, especially nursing, social work, and chaplaincy. A few efforts have been made to train medical school faculty members in palliative care. The annual 2-week Program in Palliative Care Education and Practice at Harvard Medical School was rated as “transformative” by 82 percent of respondents who participated in 2000-2003 (Sullivan et al., 2005). The shortage of hospice and palliative medicine faculty may in part reflect the low levels of funding for palliative care research noted in Chapter 2, with faculty members’ ability to attract research dollars being a high priority for medical schools.
One way to ensure attention to hospice and palliative medicine in the undergraduate curriculum, in graduate training, and in the minds of future physicians is to include more of this content in medical licensure and specialty board certification examinations. Currently, little hospice and palliative medicine content appears in the main licensure test, Step 3 of the United States Medical Licensing Examination. As the final phase of the physician licensure examination process, Step 3 centers on biomedical and clinical science and is open to all medical and osteopathic school graduates who have passed Steps 1 and 2. Authoritative content outlines provide an overview, or “blueprint,” of the content for 15 areas of the Step 3 examination (United States Medical Licensing Examination, 2013). Although a few test questions related to specific disorders conceivably involve the terminal phases of illness, there is no blueprint for end-of-life care.
Sufficient hospice and palliative medicine content is also lacking in many board certification examinations in specialties in which basic palliative care is especially relevant. In oncology, end-of-life care and communication combined are only 2 percent of the entire examination (ABIM, 2013a). The closest thing to hospice and palliative medicine content in the cardiovascular recertification examination, taken by current cardiologists and other cardiovascular disease practitioners, is a topic called “ethics, malpractice, other” within a “miscellaneous” portion of the exam content that is only 1.5 percent of the entire examination (ABIM, 2013b). In the certification examination for general internal medicine, “palliative/end-of-life care” is 3 percent of the examination content (ABIM, 2013c).
Continuing Medical Education
Because many or most physicians have had little exposure to hospice and palliative medicine in their undergraduate and graduate education, efforts have been made to fill the gap through continuing medical education. Most notably, a program originally named Education for Physicians on End-of-life Care (EPEC) was developed in the late 1990s by the American Medical Association with support from the Robert Wood Johnson Foundation. EPEC has reached many physicians and other professionals through small-group training sessions and has as its mission “to educate all healthcare professionals in the essential clinical competencies of palliative care” (EPEC, 2013b).
EPEC uses a train-the-trainer approach to disseminate knowledge and improve skills. Participants rated the project highly from the beginning, and 92 percent of 200 physicians participating in EPEC training in 1999-2000 reported that they used its content in their teaching (Robinson et al., 2004). Since being renamed Education in Palliative and End-of-life Care, EPEC has developed numerous learning modules and now disseminates them through various venues—conferences, online learning, and specialized training, with didactic sessions, videotape presentations, interactive discussions, and practical exercises (CAPC, 2013). Nurse practitioners and other nonphysicians also take advantage of EPEC, making it an interdisciplinary training platform.
Illustrating EPEC’s current scope, EPEC-Pediatrics has 23 core and 2 elective topics, taught through 20 distance learning modules and 6 1-day, in-person conference sessions (EPEC, 2013a). Since 2012, physicians and nurse practitioners have participated in “Become an EPEC-Pediatrics Trainer” workshops.6 Caregivers, emergency medicine, long-term care, on-
6Personal communication, S. Friedrichsdorf, Children’s Hospitals and Clinics of Minnesota, February 6, 2014.
cology, and veterans are among the many other subjects of EPEC training. EPEC has become essentially self-sustaining through participation fees, and it partners with diverse professional associations and other organizations, such as the National Cancer Institute (NCI, 2013).
Legislation in the state of California requires that most physicians obtain 12 hours of continuing education in pain management and end-of-life care.7 State legislatures or medical licensing boards sometimes do require that physicians, as a condition of periodic relicensure, take continuing education courses on specified, socially pressing topics, although it is not clear that such continuing education mandates are effective in changing practice patterns.8 However, among 81 physicians taking a course complying with the California requirement, two-thirds of 51 immediate respondents reported an interest in changing their practice patterns, and most (90 percent) of 31 respondents reported 4 months later that their practice patterns had indeed changed (Leong et al., 2010).
Interdisciplinary formats are a common feature of continuing education in communication related to end-of-life care. At Children’s Hospital Boston, physicians participated with nurses, social workers, psychologists, and chaplains involved in pediatric critical care in a day-long interprofessional communication program (the Program to Enhance Relational and Communication Skills, or PERCS). The program was created by the Institute for Professionalism and Ethical Practice. In a survey of 110 participants, 106 responded immediately, and 57 of these returned a follow-up questionnaire 5 months later. Respondents were nearly unanimous in indicating that the course improved their skills and confidence in communication (Meyer et al., 2009).
In some cases, continuing education requirements may limit patient care. In 2012, for example, the U.S. Food and Drug Administration (FDA) adopted a risk evaluation and mitigation strategy for prescribing more than 30 extended-release and long-acting opioid analgesic medications that “strongly encourages” prescribers to take a continuing medical education course on opioid prescribing (FDA, 2013). The FDA supports making this education mandatory and linking it to prescriber registration with the Drug Enforcement Administration (American Pharmacists Association, 2012; FDA, 2013). Although prescribers of these frequently abused drugs certainly should be aware of the attendant risks (see IOM, 2011, pp. 142-
7California AB487 (2001), Cal. Bus. & Prof. Code, sec. 2190.5. This is a one-time requirement. Pathologists and radiologists are exempt. Exemptions may also be granted to physicians who are not engaged in direct patient care, do not provide patient consultations, or do not reside in California.
8For a meta-analysis of the outcome literature on continuing medical education, see Mansouri and Lockyer (2007).
148),9 such a requirement might dissuade some clinicians from prescribing opioids at all, thereby limiting the availability of an important pain relief modality for people with advanced serious illnesses.
Accreditation standards for undergraduate baccalaureate nursing programs, adopted by the American Association of Colleges of Nursing in 2008, specify that all baccalaureate nursing graduates should be prepared to “implement patient and family care around resolution of end-of-life and palliative care issues, such as symptom management, support of rituals, and respect for patient and family preferences” (AACN, 2008, p. 31). This mandate is analogous to the Liaison Committee on Medical Education standard noted above.
Historically, the lack of emphasis on palliative care seen in medical education appears to have been duplicated in nursing education. For example, registered nurse anesthetists received little training in palliative or end-of-life care as students, and a literature search involving preparation of certified registered nurse anesthetists found “no publications addressing the importance of incorporating elements of palliative care into nursing and nurse anesthesia practice” (Callahan et al., 2011, p. S15).
Oncology nurses were found to be so consistently distressed when communicating with patients and families about end-of-life care that development of a communication curriculum was considered necessary for use in early palliative care (Goldsmith et al., 2013). An examination of palliative care education for pediatric nurses showed that nurses entering practice “often were grossly unprepared to care for children and families in need of end-of-life care” (Malloy et al., 2006, p. 555). However, a survey of 279 pediatric nurses in Florida found “a good level of baseline knowledge of palliative care” (Knapp et al., 2009, p. 432), especially in cities with a pediatric palliative care program (Knapp et al., 2011).10 In a 2006 survey in which 71 percent of baccalaureate nursing schools participated, 99 percent reported some offering on death and dying, but on average, these totaled less than 15 hours of instruction (Dickinson, 2007).
Several organizations have joined forces to train nursing school faculty and potential nursing mentors in palliative care. The End-of-Life Nursing Education Consortium (ELNEC) was initiated in 2000 with 4 years’ sup-
9In a 2014 state of the state address devoted entirely to problems of addiction, Vermont Governor Peter Shumlin said that treatment for opiate addiction in his state increased by 770 percent, to 4,300 cases (or 1 in about every 150 residents), between 2000 and 2012 (Seelye, 2014). Nationwide opioid overdoses tripled in 20 years, causing 15,500 deaths in 2009 (CDC, 2013).
10A “concept analysis” of pediatric palliative nursing care is provided in Stayer (2012).
port from the Robert Wood Johnson Foundation. The ELNEC program is administered by the American Association of Colleges of Nursing and City of Hope National Medical Center. The National Cancer Institute began to train graduate nursing faculty members using ELNEC in 2002. ELNEC content consists of eight modules,11 and participants receive a textbook, a 1,000-page syllabus, and other resource materials. More than 15,000 nurses and others, an estimated 11,500 of whom are nurse educators, had received ELNEC training by 2013. Besides the core ELNEC training, separate courses exist for oncology, pediatrics, critical care, geriatrics, veterans, public hospitals, and advanced practice registered nursing (ELNEC, 2013).
Examples exist in which palliative care is integrated into the undergraduate nursing curriculum. At the University of Rochester School of Nursing, topics roughly conforming to the eight ELNEC modules are included in a core end-of-life curriculum, and a hospice and palliative care elective is offered (University of Rochester Medical Center, 2013). At the University of California, San Francisco, School of Nursing, a course in palliative and end-of-life care recently became mandatory for many of the school’s programs (Schwartz, 2012). In a very different approach, one nursing school offers a course on palliative and end-of-life care structured around three apprenticeships—in cognitive learning, clinical reasoning and know-how, and moral reasoning (Hold et al., 2014).
A major textbook in palliative nursing is divided into general principles, symptom assessment and management, the meaning of hope in the dying, spiritual care, special patient populations, end-of-life care across settings, pediatric palliative care, special issues for the nurse in end-of-life care, international models of palliative care, and a conclusion on a good death (Ferrell and Coyle, 2010). Another textbook is divided into caring for the whole person, social and professional issues, psychosocial considerations, and physical aspects of dying (Matzo and Sherman, 2010).
Schools of Public Health
Medical and nursing schools are not the only health professions education venues that find little room in their curricula for end-of-life and palliative care. In 2011-2013, only 3 of the 49 accredited U.S. schools of public health offered a course on end-of-life care policy. Another 6 public health schools offered some content on end-of-life concerns, but most of these offerings embedded this content in courses on aging policy and so did not consider the entire life span (Lupu et al., 2013). A curriculum on the topic
11The eight ELNEC modules are nursing care at the end of life; pain management; symptom management; ethical/legal issues; cultural considerations in end-of-life care; communication; loss, grief, and bereavement; and preparation for and care at the time of death.
has been developed under the auspices of the Foundation for Advanced Education in the Sciences at the National Institutes of Health, but it apparently has not been widely adopted.
Public health courses on end-of-life care could help lead future health care administrators and policy makers and their educators to incorporate principles of palliative care into health care systems. To illustrate, local, state, and national population health strategies could emphasize the quality of life of people with advanced serious illnesses, promote palliative care in health professions education, provide assistance to family caregivers, and ensure greater availability of bereavement services.
As a clinical field in which communication is exceptionally important, palliative care lends itself to education approaches other than didactic lectures. Simulation techniques, experiential learning, role playing (with or without outside actors), team-building exercises, interdisciplinary seminars, use of social media, journal or research clubs, and other nontraditional or supplemental methods of learning all may be appropriate in building students’ knowledge and skills. Educational approaches could include clerk-ships and other placements in hospices or other palliative or long-term care settings, interviews and conversations with patients and families, case studies involving unwanted or futile treatment, an opportunity to accompany a hospital chaplain on rounds, preparation and discussion of research papers, telehealth or telemedicine demonstrations, and exploration of attitudes toward health care in a minority community.
Perhaps more than most other clinical specialties, hospice and palliative medicine calls on clinicians to be flexible and embrace uncertainty, especially in prognosis. Health professionals involved in either basic or specialty palliative care must respond in timely and appropriate ways when advanced disease trajectories take an unexpected path. Hospice and palliative medicine’s focus on maximizing patient comfort and quality of life requires a different mind-set on the part of the care team, and often, considerable creativity.
Lack of Interprofessional Collaboration
The development of high-functioning teams of health professionals is receiving increased attention. Forms of collaboration include interprofessional, or multiple professions working together toward a common goal, and transdisciplinary, or multiple professions working together under a shared model with a common language (IOM, 2013a). In this report, the term “interprofessional” education encompasses the concept of transdis-
ciplinary education. In these and other collaborative arrangements, physicians and other participating health professionals subordinate their own interests to the interests of the team and evince core humanistic values, such as honesty and integrity, caring and compassion, altruism and empathy, respect for others, and trustworthiness (IOM, 2013a; Swick, 2000).
Professional education can encourage or obstruct interprofessional collaboration. It can foster team-building skills, such as communication, and important team-supporting attributes, such as trust and a focus on results. George Thibault, president of the Josiah Macy Jr. Foundation, suggested at a recent IOM workshop that team-based competencies should be a core goal of health professions education, and a theme of that workshop was the importance of leadership, including educational leadership, to effect such a cultural change (IOM, 2013b).
In reality, however, most health professions education is siloed. According to a Macy Foundation report, for example, “medical education inculcates physicians with a ‘captain of the ship’ attitude[,] which can impair interprofessional collaboration” (Josiah Macy Jr. Foundation, 2011, p. 6). Nursing education, too, is “very siloed,” relying on a preponderance of theory classes unconnected to practical realities (IOM, 2010, p. 20). According to authors of a nursing-oriented review of interprofessional education, “Despite some successes in educating the different disciplines collaboratively, the degree of interdisciplinary education at present is insufficient and sporadic. Within the nursing curriculum, the content for teamwork is present, but the evidence for education of disciplines together is sparse” (Newhouse and Spring, 2010, p. 2).
Interprofessional collaboration is a key feature of palliative care, which, as emphasized in Chapter 2, is largely a team enterprise. Siloed education fosters attitudes that can lead team members to struggle over jurisdictional turf, misunderstand each other’s processes and objectives, fail to listen to or anticipate the concerns of other disciplines, avoid collective responsibility, and allow individual interests to interfere with patient and family interests.
Palliative care training, by contrast, “is oriented to teams rather than individuals,” especially in Palliative Care Leadership Centers, established in 2004 through the Center to Advance Palliative Care with initial support from the Robert Wood Johnson Foundation. These centers provide education programs geared to eight types of health care settings,12 followed by a year-long mentoring program. The education programs include a core program, consultancy-based programs oriented to a developing or recently established palliative care program, and a pediatrics program
12The eight types of settings used by the leadership centers are integrated health systems, community hospitals, hospices, academic medical centers, cancer centers, children’s hospitals, U.S. Department of Veterans Affairs (VA) facilities, and safety-net hospitals (CAPC, undated).
(CAPC, undated). Further, interprofessional fellowships in palliative care have been established by the VA as part of that agency’s commitment to palliative care.
Neglect of Communication Skills
Clinicians’ skill in communicating with patients and families is a key aspect of end-of-life and palliative care, as noted in Chapter 2 and discussed at length in Chapter 3. As a pair of palliative care experts recently commented, “Foremost, clinicians and students in the health professions need better training in basic palliative care competencies, especially communication skills” (Block and Billings, 2014, p. 1700). Research on health professionals’ communication skills has focused primarily on physicians, for whom the need may be greatest. This section likewise focuses on the development of physician communication skills, but the committee believes that the development of these skills also is important for nurses and other health professionals.
Effective physician communication in end-of-life situations has been described as follows:
good communication in palliative medicine adopts a modern, patient-centered, biopsychosocial-spiritual framework, and focuses on eliciting patient concerns, identifying their agenda, providing complete information, but doing so in a way that allows patients and families to digest what they hear. It is respectful, empathic, inclusive, and efficient, seeks to elicit patients’ goals and preferences, and to match these to an individualized plan of care. (LeBlanc and Tulsky, in press)
These authors also observe that “communication behaviors are readily measurable, teachable, and learnable” (LeBlanc and Tulsky, in press).
Hospice and palliative medicine specialists are not alone in needing knowledge and skill in communicating with patients and families facing the end of life. Primary care clinicians, of course, but also oncologists, cardiologists, nephrologists, intensivists, emergency physicians, hospitalists, surgeons, and other clinicians must effectively sound out, listen, ask, inform, come to agreement, comfort, and in other ways achieve communication success with patients and family members as part of basic palliative care. Even radiologists, anesthesiologists, pain specialists, and physical medicine specialists have occasion to communicate effectively with patients with advanced serious illnesses and their families.
Nonetheless, physician shortcomings in communication, especially an apparent unwillingness to discuss the full range of treatment options for people with advanced serious illnesses, are well documented. According to Wright and colleagues (2008, p. 1672), “Physicians . . . often avoid
EOL [end-of-life] conversations, communicate euphemistically, are overly optimistic, or delay discussions until patients are close to death.” Interviews with 196 physicians caring for 70 patients who died in a hospital revealed that 86 percent of the physicians reported knowing death was imminent, but only 11 percent reported personally speaking with patients about the possibility of dying (Sullivan et al., 2007). Shah and colleagues (2013) report that many cardiologists and primary care physicians do not discuss options with patients with heart failure, partly out of a fear of destroying hope.
A long line of studies has established that communication skills can be taught effectively to physicians at numerous points in their educational careers:
- A communication intervention course led internal medicine residents to significant improvements in delivering bad news (Alexander et al., 2006).
- A communication training course led oncology fellows to improvements in comfort level and skill with difficult conversations (Back et al., 2003).
- Similarly, a course in teaching communication skills led medical school faculty members to greater comfort level and skill in teaching communication skills (Back et al., 2009).
- Seminal UK research showed that courses in communication skills led senior oncologists to improvements in confidence and behavior in communication, initially and at 3 and 12 months (Fallowfield et al., 1998, 2002, 2003).
- Three weekly sessions with an expert facilitator and a simulated patient or caregiver led “junior doctors” working in Australian hospitals to improvements in communication skills and greater confidence in communicating about end-of-life problems (Clayton et al., 2013).
- A three-pronged approach led house officers in a medical intensive care unit rotation to improvements in confidence in conducting family conferences; delivering bad news; and discussing do-not-resuscitate orders, comfort care, withdrawal of life-sustaining treatment, and advance directives (Seoane et al., 2012).
- Instruction sessions on communication for first- and second-year medical students at the Warren Alpert Medical School of Brown University were rated highly by students for their effectiveness in enhancing communication skills and helping students gain perspective on and appreciate the complexities of health care situations (Shield et al., 2011).
Although these results show that good communication can be taught, there appears to be a dearth of medical faculty members actually teaching the subject. To fill this deficit, faculty training programs in communication have emerged. One such program is Oncotalk Teach, offered to oncology faculty through faculty retreats and distance learning (Back et al., 2009). In another example, 33 physicians in diverse specialties at a comprehensive cancer center participated in a communications workshop; afterward, three-fourths reported feeling comfortable with facilitating training workshops in communication skills (Bylund et al., 2008).
Nevertheless, the medical literature offers a paucity of information about medical schools’ efforts to redress students’ communication difficulties (Wiskin et al., 2013), and many of these efforts appear to be relatively modest. They include, for example, two communication interventions for third-year students at the Yale School of Medicine: a 3.5-hour workshop in communicating difficult news; and an assignment, including preparation of a written report, on communication and other problems in a single patient’s end-of-life care as part of a clinical clerkship (Ellman and Fortin, 2012).
Graduate medical education also does not typically emphasize development of communication skills. In a survey of 89 pediatric residents, for example, all but one said acquiring effective communication skills during their residency was a priority, but only 19 percent felt confident in discussing end-of-life issues with patients and families, 23 percent felt confident in speaking with children about serious illness, and 27 percent felt confident in giving bad news (Rider et al., 2008).
Communication in the advance care planning context also is not widely taught. To the extent that future physicians learn about advance care planning, the topic typically is covered in medical ethics courses, and according to one group of researchers, “formal curricula on advance directives are not commonly offered by residency programs.” These researchers conducted a survey of 59 internal medicine and family medicine residents in Texas. Nearly half of the respondents said they did not have “sufficient knowledge of advance directives, given my years of training” (Colbert et al., 2010, p. 280). Some new approaches are emerging. For example, a facilitated quality improvement workshop for internal medicine residents increased confidence with advance care planning for patients who were not English proficient (Tung et al., 2013). Chapter 3 provides additional detail on communication challenges, including those related to advance care planning.
Palliative care team members include physician specialists in hospice and palliative medicine, palliative nursing specialists, hospice and pallia-
tive care social workers, pharmacists, and chaplains. Others with important roles include rehabilitation therapists, direct care workers, and family members.
Physician Specialists in Hospice and Palliative Medicine
For patients who receive specialty (versus basic) palliative care, the hospice and palliative medicine specialist is responsible for managing all diagnostic and treatment services related to comfort and relief of symptoms. This role, although it differs somewhat from setting to setting, is comparable to that of the hospice medical director, who, under the Medicare Hospice Benefit, “has responsibility for the medical component of the hospice’s patient care program.”13
Because of their relatively low numbers, hospice and palliative medicine specialists typically function as consultants rather than as direct care providers. Despite this predominantly consultative role, it appears reasonable, in the committee’s view, for patients who are referred to specialty palliative care services to expect to be seen by a qualified palliative care physician at some point, similar to the expectation when a patient enrolls in hospice. A personal encounter can help reassure patients that care is being well managed and is truly patient-centered. Even the physician’s touch can be reassuring (Verghese et al., 2011). Likewise, personal encounters enhance physicians’ understanding of the patient’s condition and personality and thereby potentially improve clinical decisions and coordination of care.
Following considerable growth in hospice and palliative medicine training over the past decade, there were 107 accredited fellowship programs in 39 states plus the District of Columbia in the 2014-2015 academic year (ACGME, 2014). What factors lead a physician to enter this field? In a survey of 62 fellows conducted in July 2009, 63 percent said they did not feel prepared to manage dying patients, and 41 percent felt regret about the care they delivered. While 59 percent had no exposure to hospice and palliative medicine in medical school, 61 percent were exposed to it during residency training (Legrand and Heintz, 2012).
The increase in postgraduate training has been accompanied by changes in the certification process for physicians seeking to demonstrate competence in this field. In the 10-year period ending in 2006, the American Board of Hospice and Palliative Medicine certified more than 2,100 physicians (NHPCO, 2006). Then in September 2006, the new field received formal recognition when the American Board of Medical Specialties (ABMS) approved the creation of hospice and palliative medicine as a subspecialty. At that point, physicians certified by the previous, less formal process
1342 CFR 418.102(d).
received “grandfathered” certification status for a period of 10 years after their initial certification. The ABMS examination has been offered every 2 years since 2008. In 2012, the examination pass rate was 82 percent, and 3,368 candidates passed (ABEM, 2013). Beginning in 2014, completion of an accredited hospice and palliative medicine fellowship is a prerequisite for certification.
ABMS sponsors the hospice and palliative medicine certification examination with the participation of 10 certification boards. As Table 4-1 shows, two boards—the American Board of Internal Medicine and American Board of Family Medicine—account for 88 percent of all certifications among a total complement of about 6,400 hospice and palliative medicine specialists.
To ensure continuing competence, the ABMS certification must be renewed every 10 years. The recertification requirements of continuing education, training, and examinations are similar to those of other ABMS certifications. The recertification examination, administered by the American Board of Internal Medicine on behalf of all 10 cosponsoring boards, is administered simultaneously to all eligible physicians.
For osteopathic physicians, the American Osteopathic Boards of Family Medicine, Internal Medicine, Neurology and Psychiatry, and Physical Medicine and Rehabilitation offer a Certificate of Added Qualification (and peri-
TABLE 4-1 Physicians Board-Certified in Hospice and Palliative Medicine Through the American Board of Medical Specialties, by Specialty Board, 2008-2012
|Sponsoring Board||Number Certified||Percentage|
|Psychiatry and Neurology||104||2|
|Obstetrics and Gynecology||68||1|
|Physical Medicine and Rehabilitation||40||1|
SOURCES: Personal communication, S. McGreal, marketing and communications specialist, ABMS, February 4, 2014; ABEM, 2013; ABFM, 2013; ABIM, 2013d; ABP, 2013; ABPMR, 2013; ABPN, 2013; ABS, 2013.
odic recertification) in hospice and palliative medicine. From 2009 to 2013, all doctors of osteopathy (DOs) who obtained board certification in any specialty were permitted to participate in the hospice and palliative medicine osteopathic certification examination, but as of 2014, only candidates from these four boards will be eligible. As of 2012, 174 DOs held osteopathic certification in hospice and palliative medicine. This figure comprises 118 family physicians, 48 internists, 3 emergency physicians, 2 neurologist-psychiatrists, 2 surgeons, and 1 physical medicine-rehabilitation specialist (Gross and Bell, 2013). DOs also may qualify for ABMS certification.
The total number of physicians certified in hospice and palliative medicine is not readily apparent. One source estimates there were 5,000 board-certified hospice and palliative medicine specialists in 2013 (Quill and Abernathy, 2013), but as Table 4-1 reveals, the actual number was at least 25 percent higher. Complications entailed in computing an accurate total include the lack of data on how many physicians who became certified in the pre-2006 process have not yet been certified through the ABMS process but are still practicing. Taken together, however, data from Table 4-1 and the osteopathic certification process suggest a total of more than 6,500 board-certified hospice and palliative medicine specialists in the United States. This figure amounts to about 0.8 percent of all practicing U.S. physicians (KFF, 2014).
In May 2014, the Hospice Medical Director Certification Board administered the first certification exam directed explicitly at the unique clinical and administrative skills and knowledge required in a hospice setting. With no prerequisite fellowship for this focused certification, the aim is to raise the bar for physicians who may work closely with hospices but are not seeking extensive tertiary training (HMDCB, 2013).
One important dimension of the adequacy of the supply of hospice and palliative medicine specialists is race/ethnicity. The committee did not find data on the racial/ethnic composition of the nation’s supply of board-certified hospice and palliative medicine physicians. In the survey of 62 fellows noted at the beginning of this section, however, none were African American (Legrand and Heintz, 2012). Greater success in recruiting minority physicians into hospice and palliative medicine would likely make palliative care more attractive and accessible to minority patients and families (see Chapter 3) and would enhance cultural competence within the specialty.
Hospice and Palliative Nursing Specialists
Nurses play especially vital roles in care at the end of life. One important role is serving as a patient advocate, ensuring that patients and families receive culturally sensitive care and sufficient pain management and relief
of other symptoms (Hebert et al., 2011). A review of 44 articles from 10 countries found that hospital nurses aid in the decision-making process near the end of life by serving as information brokers, supporters, and advocates, and have sets of strategies for accomplishing each of these roles. Additional research would aid in understanding how these roles and strategies link to patient and family member outcomes (Adams et al., 2011).
The goal of hospice and palliative care nursing “is to promote and improve the patient’s quality of life through the relief of suffering along the course of illness, through the death of the patient, and into the bereavement period of the family” (ANA, 2010b, p. 5; ANA and HPNA, 2007, p. 1). Palliative nurses who are registered nurses assess patients for their palliative care needs, including relief of pain and other symptoms and spiritual and social needs. They manage symptoms such as pain, anorexia/cachexia, constipation, dehydration, nausea and vomiting, diarrhea, delirium, dyspnea, lymphedema, ascites (accumulation of excess fluid in the peritoneal cavity), pruritus (itching), various oral conditions, fatigue, and other conditions. Further, they coordinate care, anticipate and attend to emergencies, and provide psychosocial care (Bruera et al., undated). Coordination, communication with families, collaboration, and patient advocacy all characterize nursing—in palliative care, in end-of-life care, and in general (ANA, 2010a).
Nursing has seven different specialty certifications in palliative care as offered by the National Board for Certification of Hospice and Palliative Nurses, geared to different levels of education and areas of training and experience. Nurses with the most training are the advanced certified hospice and palliative nurses—nurse practitioners or clinical nurse specialists who deliver care similar to that delivered by physician specialists in hospice and palliative medicine. However, state scope-of-practice laws and regulations may impose some restrictions on practice for these nurses, such as a requirement that advanced practice nurses have formal physician backup protocols or strict limits on nurses’ prescribing authority.
The group with the least amount of training is the certified hospice and palliative nursing assistants who provide bedside care, such as assistance with activities of daily living, under the supervision of a registered nurse. Certified nursing assistants help implement care plans, identify impacts on quality of life, document patient and family responses, and demonstrate other competencies (HPNA, 2009).
Table 4-2 summarizes all seven palliative nursing certification programs, which were established between 1994 and 2004. To ensure continuing competence, they require recertification within 4 years (NBCHPN®, 2014).
Palliative nursing is an increasingly well-established field. An authoritative roster of nursing education programs in palliative care lists 15 programs
TABLE 4-2 Nursing Certifications in Palliative Care
|Type of Certification||Eligibility||Number Certified*|
|Advanced certified hospice and palliative nurse||Master’s degree in nursing from an advanced practice palliative care accredited education program, or certain equivalences||943|
|Certified hospice and palliative nurse||License to practice registered nursing; 2 years of experience in hospice or palliative care recommended||11,878|
|Certified hospice and palliative pediatric nurse||License to practice registered nursing; 2 years of experience caring for children with life-limiting illnesses recommended||160|
|Certified hospice and palliative licensed nurse||Practical/vocational nursing license; 2 years of experience as a licensed practical nurse in hospice or palliative care recommended||1,022|
|Certified hospice and palliative nursing assistant||2,000 practice hours in hospice or palliative care under supervision of a registered nurse in the past 2 years||3,843|
|Certified hospice and palliative care administrator||2 years of full-time experience within the past 3 years in an administrative role in an area covered by the examination, or equivalent||273|
|Certified in perinatal loss care||Professional degree (such as registered nurse) and 2 years of full-time experience in the past 3 years in perinatal loss care and/or bereavement support||62|
*Numbers certified are current as of April 2014.
SOURCES: NBCHPN®, 2014; Personal communication, S. L. Schafer, director of certification, NBCHPN®, February 5, 2014.
at the master’s or doctoral level, with the eastern, southern, midwestern, and western regions of the country each being represented by at least two programs (HPNA, 2013).
Reflecting growth in the specialty, the Hospice and Palliative Nurses Association now claims 11,000 members, primarily hospice and palliative nurses, such as certified hospice and palliative nurses. The association,
the certification board, and the Hospice and Palliative Nurses Foundation have joined in the Alliance for Excellence in Hospice and Palliative Nursing, which advocates on behalf of the field. The alliance’s concerns include patient access, ensuring patient choice, patient-centered interdisciplinary care, acknowledgment of the role of nurses, and enabling advanced certified hospice and palliative nurses to practice to the full extent of their training instead of being restricted by state scope-of-practice laws (Alliance for Excellence in Hospice and Palliative Nursing, 2013). Another practice concern is the low staffing levels in units that provide end-of-life care, which do not take into account patients’ spiritual and emotional needs, the importance of having a nurse at the bedside at the time of death, and a nurse’s need for some respite after a patient dies (Douglas, 2012).
Hospice and Palliative Care Social Workers
The role of social workers in end-of-life care often focuses on self-determination, including bioethics consultation and advance care planning. Additional competencies include resource linkage (such as discharge planning), case management (for care coordination), and advocacy. Social workers are particularly concerned about the end-of-life needs of vulnerable individuals (NASW, 2004). They often are part of palliative care teams in hospitals, nursing homes, and hospices, and even may work in emergency departments (Lawson, 2012). Others work in social service agencies to provide community-based social supports for patients and families, such as assistance with transportation, income support, and enrollment in health plans.
In recent years, the profession of social work has developed standards, certifications, and advanced levels of training for those providing support to people approaching death:
- Since 2008, the National Association of Social Workers (NASW) has offered specialty certification in hospice and palliative care at the level of advanced certified hospice and palliative care social worker for licensed social workers who hold a master’s degree in social work, have at least 2 years’ experience in hospice and palliative care, and have acquired at least 20 hours of related continuing education.
- Since 2009, certification at the level of certified hospice and palliative care social worker has been available to licensed social workers who hold a bachelor’s degree in social work, have at least 3 years’ experience in hospice and palliative care, and have acquired at least 20 hours of related continuing education.
These two credentials are among 18 advanced practice specialty credentials offered by NASW as of 2014. All require biannual renewal (NASW, 2014).
Another organization, the Board of Oncology Social Work Certification, offers advanced specialty credentials for master’s degree social workers involved in oncology. While oncology encompasses a separate specialty from hospice and palliative care, this certification requires experience in oncology, palliative care, or end-of-life care (Board of Oncology Social Work Certification, 2014).
Partly with support from the Project on Death in America, many colleges and universities have developed specific courses and postdegree certificate programs for social workers in palliative and end-of-life care (Walsh-Burke and Csikai, 2005). That project was also instrumental in establishing the Social Work Hospice and Palliative Care Network, an ongoing enterprise “created to bridge the gaps in social work’s access to information, knowledge, education, training, and research in hospice and palliative care” (Social Work Hospice and Palliative Care Network, 2014). The network was partly a product of two Social Work Summits on End-of-Life and Palliative Care, held in 2005 and 2006 (Blacker et al., undated).
Many hospice and palliative care social workers practice in hospice. Under the Centers for Medicare & Medicaid Services’ hospice conditions of participation, hospice social workers must hold a master’s degree in social work; hold a bachelor’s degree in social work and have 1 year of experience in a health care setting; or hold a bachelor’s degree in a related social science discipline, have 1 year of experience in a health care setting, and work under the supervision of a social worker holding a master’s degree in social work (CMS, 2008, Section 418.114(b)(3)). In a survey of 1,169 hospice and palliative care social workers, most reported being engaged in communicating the psychosocial needs of patients and families to other members of the care team and in assessing patients’ and family members’ grief and bereavement needs; few held NASW certification (Weisenfluh and Csikai, 2013).
NASW’s Standards for Palliative and End of Life Care cover ethics and values; knowledge; assessment; intervention/treatment planning; attitude and self-awareness; empowerment and advocacy; documentation; interdisciplinary teamwork; cultural competence; continuing education; and supervision, leadership, and training (NASW, 2004). A major textbook in social work palliative care includes sections on specific settings of care, components of practice (screening, assessment, intervention), population-specific practice, collaboration, “Regional Voices from a Global Perspective,” ethics, and professional issues (Altilio and Otis-Green, 2011).
The role of pharmacists in palliative care and hospice includes
- assessing the appropriateness of medication orders and helping to ensure the timely administration of effective medicine,
- counseling and educating other palliative care team members about medication therapy,
- educating patients and family caregivers about the administration and use of medications,
- ensuring the availability of compounding of unusual medications,
- addressing patient and family financial concerns relating to medications,
- ensuring safe and legal disposal of medications after death, and
- communicating with regulatory authorities as appropriate (ASHP, 2002).
Given that symptom management for people who have advanced serious illnesses or are nearing the end of life relies heavily on the use of medications, pharmacists can play a key role in the interdisciplinary palliative care team. In 2002, a statement of the American Society of Health-System Pharmacists (ASHP) on the role of the pharmacy profession in hospice and palliative care highlighted pharmacists’ responsibilities and scope of practice. Pharmacists, said the statement, have a pivotal role to play in improving pain management, including “patient specific monitoring for drug therapy outcomes, recommending alternative drug products and dosage forms, minimizing duplicative and interacting medications, compounding medications extemporaneously, improving drug storage and transportation, and educating staff, patients, and families about the most efficient ways of handling and using medications” (ASHP, 2002, p. 1772).
Although pharmacy school accreditation standards do not require separate courses in end-of-life care for pharmacy students, concepts associated with pain management and palliative care are part of curriculum standards in pharmacotherapy (ACPE, 2011). A 2012 survey of education in pharmacy schools found an average of 6.2 hours devoted to teaching students about death and dying, an increase from 3.9 hours in 2001 (Dickinson, 2013; Herndon et al., 2003). The 2012 survey also found that 82 percent of pharmacy schools offered coursework on end-of-life care for pharmacists.
Pharmacy school graduates are eligible for a year-long post-graduate (PGY1) residency in pharmacy practice, community pharmacy, or managed care pharmacy. Individuals who wish to gain further specialization can enroll in a second year of residency (PGY2). ASHP serves as the recognizing body for pharmaceutical residency programs, a role that includes monitor-
ing the implementation of the Resident Matching Program. In 2014, 26 distinct types of PGY2 specialty programs were available, including one in pain management and palliative care. Within this one specialty, 11 individual programs are available in the United States. Most of these programs offer only one position per program, so a total complement of only 13 pain management and palliative care positions was available during the 2014 match (National Matching Services, 2014). However, pharmacists need not complete a pain management and palliative care residency program to work in palliative care. A recent survey of pharmacists in that field found that only 23 percent had completed a PGY1 residency, and just 5 percent had completed a PGY2 residency (Latuga et al., 2012).
The Board of Pharmacy Specialties (BPS) offers certification in eight specialties, as well as two areas that provide an Added Qualification credential. As recently as 2011, BPS considered adding pain and palliative medicine as a specialty, but it has yet to do so (BPS, 2011).
Chaplaincy services tend to be the most visible means of meeting the spiritual care needs of patients with advanced serious illnesses. Spiritual care is one of eight domains of quality palliative care identified by the National Consensus Project for Quality Palliative Care (Dahlin, 2013), and accreditation standards require hospitals and home health agencies to accommodate all patients’ religious and spiritual needs (Joint Commission, 2008).
Although spiritual care can be provided by physicians,14 nurses, social workers, other clergy, practitioners of integrative medicine, and lay people, it is the special domain of chaplains. In health care institutions, chaplains typically strive to serve people of many different denominations.
Chaplains perform spiritual assessments of patients and families, formulate spiritual treatment plans, consult with other palliative care team members or outside clergy to ensure that spiritual needs are adequately met, and provide direct services to patients and families. A consensus conference on spiritual palliative care developed a set of recommendations that emphasizes spiritual assessment, responses to spiritual distress, and timely access to chaplaincy services (Puchalski et al., 2009).
About two-thirds of U.S. hospitals have chaplains, and in hospitals with palliative care programs, their duties may include serving palliative care patients. Hospital chaplains conduct spiritual assessments; provide
14In a 2005 survey of 363 family medicine residents, 96 percent agreed (and 60 percent of these strongly agreed) they would discuss spirituality with a patient on request (Saguil et al., 2011).
empathetic listening along with life review and emotional assistance; and when asked, lead prayer and religious observances (Jankowski et al., 2011). As one example of the scope of services that may be provided, a chaplaincy program at the Methodist Hospital System in Houston trains staff in the system’s spiritual environment of caring and when to call in a chaplain, provides direct services to patients, and conducts community outreach (Millikan, 2013).
In a nationwide study of hospital patients who died between 2001 and 2005, the presence of chaplaincy services was associated with a 4 percent lower rate of hospital mortality and a 6 percent higher rate of hospice enrollment, after controlling for geographic variables, hospital type and size, population density, socioeconomic status, and presence of a palliative care program (Flannelly et al., 2012).
A study of family members of 284 deceased residents of long-term care facilities in four states found that 87 percent of residents had received spiritual care from one source or another. Family members of residents who did receive spiritual care rated the quality of care received in the last month of life higher than did other family members (Daaleman et al., 2008; see also Daaleman, 2010). One impediment to spiritual care may be that the privacy provisions of the Health Insurance Portability and Accountability Act of 1996 appear to exclude spiritual and religious healing from the definition of health care. As a result, clergy who are not on a hospital (or nursing home) staff cannot readily determine which of their congregants are patients there (Tovino, 2005).
Chaplaincy services are a required element of hospice care under the Medicare Hospice Benefit. Hospice and palliative care chaplains sometimes perform the role of clergy for people near the end of life who do not have a regular religious affiliation (Vitello, 2008).
Chaplains are certified by the Board of Chaplaincy Certification Inc., an affiliate of the 4,500-member Association of Professional Chaplains. This workforce appears small compared with the potential need. The general certification examination covers 29 areas of competency and exists on two levels: board certified chaplain (BCC) and associate certified chaplain (ACC). Both levels require an undergraduate degree, ordination or commission to function as a chaplain, a letter of endorsement from a recognized faith group, and 2,000 hours of work experience. Additional BCC qualifications are 72 credit hours in a graduate theological program and four units of clinical pastoral education. Additional ACC qualifications are 48 credit hours in a graduate theological program and two units of clinical pastoral education (BCCI, 2013).
Specialty certification in palliative care (BCC-PCC) was introduced in 2013 as the first in an expected series of specialty chaplaincy certifications. Part of the purpose of palliative care specialty certification is to help
chaplains become fully recognized and functioning members of palliative care teams (APC, 2013).
Several categories of rehabilitation therapists are active in the care of people with advanced serious illnesses, including palliative care:
- Occupational therapists help patients perform activities of daily living by dressing, bathing, and ensuring safety. They further assist with instrumental activities of daily living through meal preparation and home management. They facilitate rest and sleep, play, and social and family interaction (AOTA, 2011).
- Physical therapists provide services involving home safety, pain management, training in the use of medical equipment, caregiver education, patient positioning, energy conservation, breathing techniques, strengthening, balance reeducation, gait training, transfer training, and discharge planning (Cruz, 2013).
- Speech-language pathologists help relieve communication impairments and swallowing difficulties (Pollens, 2004).
Direct Care Workers
According to an IOM report on workforce needs for an aging population, direct care workers “are the primary providers of paid hands-on care, supervision, and emotional support for older adults in the United States” (IOM, 2008, p. 199).15 Direct care workers often provide assistance with activities of daily living and serve the patient at the bedside morning, noon, and night in nursing homes, private homes, and other nonhospital settings. The category of direct care workers consists of nursing assistants, home health aides, and personal care aides.
Direct care is not established as a profession, and workers often are foreign born (23 percent in 2010) and constitute an almost invisible corps of essential health care personnel. In 2008, there already were more than 3 million direct care workers, and a workforce of 4.3 million is forecast for 2018—a projected increase of more than 40 percent in 10 years (PHI,
15The term “direct care worker” in this context differs from some other uses of the term. In other contexts, the term may cover not only aides but also many nurses and other health professionals who provide services to patients directly, rather than through consultations, administration, or other indirect ways.
2011). About 90 percent are women, and 45 percent are African American or Hispanic (IOM, 2008).
Many direct care workers are employed by nursing homes, hospices, home health agencies, or continuing care residential communities, and others are hired by families and paid out of pocket for services provided in the home. Because pay rates are low and many jobs are part-time, nearly half of direct care workers are eligible for public assistance. A recent U.S. Department of Labor regulation would bring direct care workers under minimum wage legislation (Lopez, 2013). The federal government sets training requirements for nursing assistants and home health aides who work in nursing homes and home health agencies certified for Medicare and Medicaid. For other types of direct care workers, states may set requirements (PHI, 2011). Under the Affordable Care Act, nursing homes are required to provide in-service training to nursing assistants on dementia and resident abuse (CMS, 2011).
Given low pay rates and other negative aspects of many direct care jobs, as well as projected increases in demand associated with the aging population, the IOM report cited above recommends that state Medicaid programs increase direct-care pay rates and fringe benefits. It also recommends state and federal action to increase minimum training standards, including establishment of 120 hours of training (compared with the current 75 hours) as a minimum requirement (IOM, 2008, Recommendations 5-1 and 5-2).
Family members, even those who may not be fully engaged as family caregivers, play vital roles on the palliative care team. They support the patient. They advocate for the patient to ensure that needs are being met and obvious errors are avoided. They assist with medication acquisition and administration, especially in home-based care. They inform professional care team members about patient preferences and personal traits. They contribute to, and help patients understand, the treatment plan and how it is being implemented. And they participate in transitions from one setting to another. As described in Chapter 2, family caregivers (with “family” defined broadly) have a dual presence on the palliative care team, both serving as the main provider of services from hour to hour and requiring support services themselves.
This study yielded the following findings on creating change in professional education to improve the quality of end-of-life care.
Growth of Palliative Care Specialties
Since the IOM report Approaching Death (IOM, 1997) was published, hospice and palliative medicine has become established as a defined medical specialty, with 10 cosponsoring certification boards, and as a certification of added qualification in four osteopathic specialties. As a result, more than 6,500 physicians are now board certified in this specialty. Certification programs in palliative care have also been established for seven levels of nursing, two levels of social work, and chaplaincy16,17 (ABEM, 2013; ABFM, 2013; ABIM, 2013d; ABMS, 2012; ABP, 2013; ABPN, 2013; ABS, 2013; APC, 2013; Gross and Bell, 2013; NASW, 2014; NBCHPN®, 2014).
Palliative Care in the Curriculum
In medical schools, the curriculum is required to cover end-of-life care, but the average total offering is only 17 hours over the 4 years, and there usually is no required course. Baccalaureate nursing programs are similarly required to include end-of-life care, but the average total offering was most recently determined to be less than 15 hours (AACN, 2008; Dickinson, 2007, 2011; Liaison Committee on Medical Education, 2013; Van Aalst-Cohen et al., 2008).
Palliative Care Content in Medical Licensure and Certification Examinations
Palliative care content in medical licensure and non–hospice and palliative medicine certification examinations appears limited. Palliative and end-of-life care is not among the 15 areas blueprinted for Step 3 of the United States Medical Licensing Examination. End-of-life care and communication account for only 2 percent of the content of the oncology certification examination. The entire subject of “ethics, malpractice, other”—which conceivably could include some aspects of palliative care—accounts for only
16Personal communication, S. McGreal, marketing and communications specialist, ABMS, February 4, 2014.
17Personal communication, S. L. Schafer, director of certification, NBCHPN®, February 5, 2014.
0.5 percent of the content of the cardiovascular recertification examination (ABIM, 2013a,b; United States Medical Licensing Examination, 2013).
Continuing Education in Palliative Care
Continuing education in palliative care includes two well-established programs that use a train-the-trainer approach: Education in Palliative and End-of-life Care (EPEC), primarily for physicians and advanced practice nurses, and the End-of-Life Nursing Education Consortium (ELNEC) for nurses (CAPC, 2013; ELNEC, 2013; EPEC, 2013b).
Supply of Hospice and Palliative Medicine Specialists
A shortage of 6,000-18,000 hospice and palliative medicine specialists has been estimated. This estimate is based on assumptions involving hospital-based services only (Lupu and American Academy of Hospice and Palliative Medicine Workforce Task Force, 2010).
Professions and Other Groups Providing Palliative Care
Palliative care providers include physicians (both hospice and palliative medicine specialists and clinicians who provide basic palliative care); nurses (including advanced certified hospice and palliative nurses, certified hospice and palliative nurses, and nonpalliative nurses); social workers (including advanced certified hospice and palliative care social workers and certified hospice and palliative care social workers); pharmacists; chaplains; rehabilitation therapists (physical therapists, occupational therapists, and speech-language pathologists); direct care workers (nursing assistants, home health aides, and personal care aides); and family members (ABMS, 2012; ANA and HPNA, 2007; AOTA, 2011; ASHP, 2002; Cruz, 2013; HPNA, 2009; IOM, 2008; Latuga et al., 2012; Lawson, 2012; PHI, 2011; Pollens, 2004; Puchalski et al., 2009; Weisenfluh and Csikai, 2013; see also Chapter 2).
The major improvement in the education of health professionals who provide care to people nearing the end of life has been the establishment of the specialty of hospice and palliative medicine, along with the establishment or growth of palliative care specialties in nursing and social work. Three remaining problems are insufficient attention to palliative care in medical and nursing school curricula, educational silos that impede the development of interprofessional teams, and deficits in equipping physi-
cians (and possibly nurses and other health professionals) with sufficient communication skills.
To serve patients who are not currently hospitalized or do not require specialty palliative care (and their families), there is a need for “basic” or “primary” palliative care. As defined in Chapter 1 (see Box 1-2), basic palliative care is provided by physicians who are not hospice and palliative medicine specialists (such as general internists, family physicians, general pediatricians, oncologists, cardiologists, nephrologists, hospitalists, emergency physicians, anesthesiologists, intensivists, psychiatrists, and surgeons), along with colleagues in other health professions. The three problems noted above contribute to a general inadequacy in preparing health professionals to provide basic palliative care.
Recommendation 3. Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish the appropriate training, certification, and/or licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for individuals with advanced serious illness who are nearing the end of life.
- all clinicians across disciplines and specialties who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management;
- educational institutions and professional societies should provide training in palliative care domains throughout the professional’s career;
- accrediting organizations, such as the Accreditation Council for Graduate Medical Education, should require palliative care education and clinical experience in programs for all specialties responsible for managing advanced serious illness (including primary care clinicians);
- certifying bodies, such as the medical, nursing, and social work specialty boards, and health systems should require knowledge, skills, and competency in palliative care;
- state regulatory agencies should include education and training in palliative care in licensure requirements for physicians, nurses, chaplains, social workers, and others who provide health care to those nearing the end of life;
- entities that certify specialty-level health care providers should create pathways to certification that increase the number of health
- care professionals who pursue specialty-level palliative care training; and
- entities such as health care delivery organizations, academic medical centers, and teaching hospitals that sponsor specialty-level training positions should commit institutional resources to increasing the number of available training positions for specialty-level palliative care.
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