Academic Psychiatry 26:76-81, June 2002
© 2002 Academic Psychiatry
Management of Terminal Illness
A Medical School–Hospice Partnership Model to Teach Medical Students About End-of-Life Care
Daniel D. Cowell, M.D.,
Charlene Farrell, R.N., B.S.N., M.B.A.,
Nichole A. Campbell, B.S. and
Brittany E. Canady, B.S.
Dr. Cowell is professor and chairman, Department of Psychiatry and Behavioral Medicine, Joan C. Edwards School of Medicine at Marshall University, Huntington, WV; Ms. Farrell is clinical assistant professor, Department of Psychiatry and Behavioral Medicine, and executive director, Hospice of Huntington; Ms. Campbell and Ms. Canady are graduate assistants, Department of Psychology, Marshall University. Address correspondence to Dr. Cowell, Department of Psychiatry and Behavioral Medicine, Joan C. Edwards School of Medicine, Marshall University Medical Center, 1600 Medical Center Drive, B500, Huntington, WV 25701-3655. E-mail: cowell{at}marshall.edu
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ABSTRACT
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Physicians are not only called upon to deal with biological, but also with psychosocial issues and concerns in the treatment of the terminally ill. Their training, however, usually does not prepare them to value palliative care, or help them cope with personal feelings about death and possible grief over a patient's loss. The authors describe what one medical school is doing regarding the challenge of preparing medical students to deal more competently and confidently with end-of-life scenarios they will encounter as primary care practitioners in underserved areas of a rural state.
Key Words: Terminal Illness • End-of-Life Care
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INTRODUCTION
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The education of medical students about the difficult bioethical, physical, and biopsychosocial issues that clinicians face in caring for patients with terminal illness has generally been neglected in our medical schools. Limitation of medical students' education in this area to on-the-job training, often with physicians as role models who themselves never had formal instruction or guidance on end-of-life care (EOLC) in their academic years, has been more the rule than the exception. A study of Georgetown University School of Medicine and Mayo Medical School students by Buss et al. (1), for example, indicated that less than half of students considered their instruction regarding end-of-life issues to be adequate, and less than one-third had themselves discussed end-of-life issues with a patient. In more recent years, however, there have been attempts by educators to remedy this situation. There is a general consensus that much needs to be done to improve the guidance, instruction, and hands-on clinical experiences that medical students need in order to better prepare them to deal with the terminally ill, their families, and EOLC. Dickinson et al. (2) found that after 20 years of practicing medicine, physicians are more likely by then to share bad news with patients and are more adapted to dealing with death. This pertained, however, only to physicians whose practice included actual interaction with the terminally ill. It seems reasonable to believe that increased clinical experience for medical students might help them develop the skills for dealing with the terminally ill that the participants in that study had gained only after many years in practice.
National surveys of medical schools concerning their educational programs on death and dying reveal that they appear primarily focused on didactic courses and lectures, though in some cases offering limited exposure to real-life situations. Dickinson and Mermann (3) in three national surveys of medical schools conducted between 1975 and 1995 found that the number of schools that offered occasional lectures, courses, or modules on death and dying had increased to 90% by the end of that 20-year period. Rappaport and Witzke (4) investigated the impact of third-year clerkship offerings over a two-year period via a questionnaire concerning the care of terminally ill patients. Almost half of the 106 respondents indicated that they could not recall the stages of death and dying; 73% reported they had not been present when a surgeon conveyed unfavorable news after surgery; 85% had never been present when an attending surgeon informed the family of a death; and only one-third could identify problems that would be likely to occur upon a patient's discharge. Fifty-seven percent of these respondents felt that they were poorly equipped to deal with the terminally ill upon graduation. We believe that these do not represent isolated findings and are probably more typical than not.
Most physicians in the past had to learn (or failed to learn) by "seat-of-the-pants" experience how to deal with such issues as imparting distressing news, consoling, comforting, and supporting family members, controlling pain, and attending to patients' emotional and physical needs at the termination of life. It is also known that many practicing physicians feel their education and training have not adequately prepared them to value palliative care, nor had they been helped to learn how to cope with their own feelings about death and possible grief over a patient's loss (4). Complicating this picture is the discomfort many physicians have in relinquishing cure-oriented technology for more course-appropriate, simpler modes of therapy and the caring and sensitive engagement with patients that are intrinsic to hospice medicine and EOLC. According to Cassel (5), physicians when involved in EOLC situations may feel quite threatened, helpless, insecure, and uncomfortably aware of their own helplessness and mortality. McFarland et al. (6) added a psychosocial and emotional component to their medical students' training in order to address these concerns. Their students at the University of South Carolina attended two thanatology seminars, with the goal of developing more caring physicians who would feel more comfortable with their own mortality and thus have a more empathetic approach with their patients. The feedback from the students was positive, and two students stated that the seminars were the most meaningful that they had attended during medical school.
A physician's ability to support and comfort is highly valued by patients. Today, care seems focused on maintaining the life of a patient, whereas it is often more realistic for physicians to acknowledge the inexorable and irreversible progression of a patient's disease and to intervene with pain management and comfort measures (7). A proposal from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) emphasizes that terminally ill patients should be cared for in hospice-like or nonacute care settings rather than in intensive care units (8). This would allow patients to have more control over their situation and to receive adequate pain management. SUPPORT also noted that a hospice-like alternative-care unit could provide training for medical students in palliative care and communication with dying patients and their families, imparting skills "applicable to end-of-life decision making and care in outpatient and home settings." The next section describes what one medical school is doing regarding the challenge of better preparing medical students to deal more competently and confidently with the end-of-life experiences they will encounter in rural settings.
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THE MARSHALL–HOSPICE MODEL PROGRAM
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As a small community-based and primary-care oriented, state-supported medical school, the Joan C. Edwards School of Medicine at Marshall University in Huntington, West Virginia (JCESOM), is tasked by the state of West Virginia to provide students with educational experiences that will prepare them to become generalists with careers in underserved areas of this rural state. Drawing on the chairman's personal experience as a medical student, and with the conviction that care of the dying is a core value of what it means to be a physician, the department since 1994 has chosen to focus on EOLC in the third-year psychiatry clerkship. In order to do so, the Department of Psychiatry and Behavioral Medicine sought collaboration with the free-standing hospice in Huntington. A hands-on hospice experience seemed to offer an extraordinarily rich clinical opportunity for students to gain pertinent skills, knowledge, behaviors, and attitudes by observing and working with terminally ill patients and their families as well as with the team of professionals who care for them. In October 1994, the department chairman approached the executive director of Hospice of Huntington (HH) with a proposal to have students actively participate in the process of hospice care. Hospice welcomed the overture and the rotation was initiated on a trial basis with two medical student volunteers. The rotation proved to be so educationally rewarding for those students that by March of 1995, the program was made a mandatory, 8-week-long clinical experience consisting of a minimum of 3 hours per week for each full-time student in the six clerkship rotations per academic year. The hospice rotation constitutes one of two secondary assignments during the clerkship, the primary assignment being inpatient work.
Through January 2001, 245 students had completed the HH rotation. The curriculum is tightly organized and begins with a systematic orientation to the history of the hospice movement and the principles of hospice care. Also included is a powerful videotape of a physician who describes his decline and (eventually futile) struggle against pancreatic cancer from the unaccustomed perspective of a patient. Following orientation each student is assigned to one of HH's three treatment teams where, after a period of observing actual care provided by nurses, social workers, aides, clergy, volunteers, and physicians (oncologists and family physicians), as well as a careful checkout by staff, they are required to make unsupervised home visits to patients and their families. Often located in difficult-to-access areas of rural counties in West Virginia, these are the kinds of venues in which many of the students will practice. Students are provided with specific guidance, in the form of a structured instrument designed by a fourth-year student to facilitate their learning and understanding as to what is expected of them when they make solo "house calls." This guides the student to collect information on the patient's medical history, current level of functioning, and support systems. The instrument is intended to make the rotation as educationally useful and personally rewarding as possible for students as well as to foster communication with patients and families.
For the sake of clinical continuity, each student is ordinarily assigned one patient for a total of five visits. The student is accompanied on the first two visits by a nurse and a social worker who introduce the student, demonstrate the role of hospice staff, and model communication and the care of dying patients and their families. Students then make three independent visits to their patients, using skills they have learned while observing the patient's decline and the family's response. If the patient dies, the student is reassigned to another patient. Students are expected to be thoroughly familiar with their patient's history and course, the psychosocial impact of the illness, and previous and current treatment, as well as to identify the patient's and family's coping skills. They provide emotional support, collaborate with the treatment team, and learn the roles of a generalist and two oncologists. Students must each present their findings and experience at an interdisciplinary staff meeting at the conclusion of the rotation, responding to a questionnaire about what they have learned, including such information as whether they would refer to hospice in the future, what points they would emphasize in recommending hospice care, and whether their perceptions of death had changed during the experience. Inpatient rounds with two HH oncologists, visiting and modeling communication with two or three patients, breaking bad news, and demonstrating adequate pain control are integrated into the students' clinical experience. Students also participate in an ethical exercise involving end-of-life dilemmas that is offered by the Hospice/Palliative Care training program; in addition, they attend a seminar on bioethical issues with a faculty bioethicist and one on spirituality in medicine.
Didactic teaching on issues such as improving communication skills, understanding Do Not Resuscitate orders, advance directives, patient rights, withholding and withdrawing life-prolonging measures, learning how to listen to patients, and the process of grief and bereavement provides the foundation for future practice. For some students the experience has been not just a "course," but a compelling, life-affirming, and even life-changing experience, as in the case of students who had not previously been able to mourn the loss of a family member or who were in the process of losing one. Interestingly on this point, Barroso et al. (9) found that the earlier in life physicians have dealt with death, the more likely they are to approach their patients with a terminal prognosis.
Experiential goals for the hospice rotation include the following:
- An introduction to the healing, caring, and ameliorative tradition of medical care when cure is neither indicated nor possible.
- An opportunity for students to learn the critical distinctions between what Cassel (5) has called disease and illness, pain and suffering.
- Participant observation of the unique challenges faced by the terminally ill and their family members that are played out against a backdrop of sometimes quite complicated intrapersonal, interpersonal, or long-standing family dynamics.
- Exposure to the interdisciplinary process involved in caring for patients and families at the end of life, providing the experience of palliative medicine as a team effort.
- The privilege to witness and engage the wide range of human responses to stress, pain, and suffering: anger, regret, loneliness, sadness, fear, and a sense of impending, irredeemable loss, as well as courage, resilience, self-discovery, hope, and peacefulness.
- Assessment and greater awareness of the medical, biopsychosocial, and practical resources that are necessary to provide for a terminal patient's physiological, spiritual, psychological, and social needs during a terminal illness.
- Observation of the often irregular pattern of the universal stages that patients and their families experience when confronted with undeniable evidence of irreversible loss, and learning how the resulting feelings of grief and bereavement are best managed.
- Encouragement and support for students as they confront their own personal spiritual values and attitudes about life, death, and the potential for personal growth even at the end of life through careful staff monitoring, supervision, and, when needed, brief counseling.
- Emphasis on the value of early referral of patients who could benefit from what a hospice has to offer family members as well as patients. We teach students about resistances that inhibit physicians from making timely hospice referrals, what they are about, and how they may be overcome in the interest of optimizing patient care and increasing the physician's own comfort level. Each clerkship group is expected to read and discuss with the department chairman the implications (in this case for work with the terminally ill) of Dr. Francis Peabody's 1927 commencement address to Harvard Medical School graduates, which ends with the timeless axiom that "the secret of patient care is in caring for the patient" (10).
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FINDINGS
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The authors have now had more than 6 years of student and faculty ratings and feedback, as well as administrative experience with the program. Hospice asks each student for written feedback at the end of the experience and upon completion of the psychiatry clerkship. The Department of Psychiatry additionally invites students to anonymously evaluate their experience with HH. These evaluations are used by the department and HH to refine the rotation in a continuous process of improvement. In surveys over a 6-year period with an 85% return, only 1% of students (two) stated they had not considered hospice to be a positive experience, and one student said he would not refer to hospice (Table 1). Some cited the hospice rotation as a highlight of the entire clerkship year. In addition, students have cited the great value (and privilege) of seeing terminally ill patients in their home environment.
Early evaluations from students recommended more rounds with the HH medical director. Rounds with specific objectives were then incorporated into the program. Students are expected to learn both communication techniques with seriously ill patients and pain control protocols through direct observation of a hospice physician. Because students' exposure to good physician role models in palliative care is critical, an HH generalist physician now teaches the module on pain control from the Education for Physicians on End-of-Life Care (EPEC) curriculum (11) in each clinical rotation. Students have responded favorably to this program change; nurse instructors and a video of a physician lecture were used in the past with less enthusiastic responses.
Students' early evaluations recommended a fourth-year hospice elective. Such an elective has been offered for five years but is rarely chosen, probably because of seniors' tendency to use electives to "audition" for residencies.
A few of the students commented on the hospice interdisciplinary team meetings as "a waste of time" (e.g., "we talked about issues unrelated to medicine—like transportation and groceries"). Students also voiced complaints that there was too much exposure to the routine work of HH. Others felt it was unrealistic to expect inexperienced third-year students to do anything useful with hospice patients.
Clinical instructors at HH altered the hospice assignments to provide a more meaningful experience. Students' participation at team meetings is now limited to discussing patients with whom they are familiar. Emphasis is placed on the role each team member plays in medical outcomes (e.g., if patients don't have transportation or food they are unlikely to keep doctors' appointments or comply with dietary instructions.) Staff try to point out by reference to specific examples, as described so eloquently by Peabody (10, pp. 130–131), just how much good work students really can do with patients.
Feedback on student visits is critical in teaching students about improving quality of EOLC. One student was pleased to hear that his visits and the fast food he brought were deemed by the patient to be the highlight of the patient's week. The rapport created by this ritual fostered a climate for further therapeutic interactions.
The majority view of students is that all medical students should be involved with hospice. Students were asked to rank responses to their hospice experiences on a Likert-type scale of 1 to 5 (1=poor, 5=excellent). Student evaluations from 1994 through January 2001 ranked their hospice experience as 4.43. Recently a former student accepted a position as an assistant hospice medical director upon completion of her generalist residency.
It might be anticipated that the hospice rotation could be stressful and destabilizing for some students; however, we have not been confronted with a student for whom clinical intervention for depression, anxiety, or other worrisome distress was indicated. There have been instances, however, where students have needed to deal with delayed bereavement or other personal issues appearing in the course of the rotation. Hospice staff remain alert to such situations and are able to offer beneficial counsel and guidance to the students involved.
Students demonstrate a variety of interests for their future practices. It is understood that some do not have an interest in the care of the dying. The goal, however, is to foster students' understanding that for most of them, palliative care will become a necessary part of their practice. Training with a hospice team is an important benefit that is lacking in a purely medical model (12). Such training involves demonstrating the emotional and interpersonal dimensions of being a physician in stressful and emotionally charged clinical situations and in understanding just how much coordinated effort it often takes to meet the needs of the terminally ill (including transportation and groceries).
It is hoped that a recent effort to make students' experience even more relevant by including a family physician in the program will underline the importance and applicability of what is being offered, especially for those who will practice rural primary care. An issue that has been raised concerns the relevancy of a hospice-based EOLC experience to rural practice. In West Virginia, there are hospice services in 54 of the 55 counties. The authors believe, however, that the principles, knowledge, skills, behaviors, and attitudes gained from the rotation, especially in the context of solo visits, will have prepared students for EOLC even if there are no multidisciplinary teams to back them up.
Since 1995, every student who graduates from JCESOM has had exposure to EOLC, and this will continue. The faculty has been encouraged and surprised by the number of families who have embraced students and asked to see "their" student even after the family member has expired and the student has moved on to another clerkship. Patients often value their interaction with students as a unique opportunity to teach physicians-to-be how to become good doctors. It has been gratifying to see patients and families take some ownership in the effectiveness of the next generation of physicians in dealing with situations such as theirs.
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CONCLUSION
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The authors believe there is substantial value in a multi-pronged, experiential approach to teaching EOLC. In this model, students are encouraged to consider their role as clinicians in one of the most compelling of human experiences. The authors believe that both carefully selected didactic material and intensive, closely supervised clinical experiences of the kind described move us closer to the ideal of producing compassionate and competent physicians. Our goal is to equip students to provide the kind of end-of-life care patients and families hope they will receive, but often do not.
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REFERENCES
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- Buss MK, Marx ES, Sulmasy DP: The preparedness of students to discuss end-of-life issues with patients. Acad Med 1998; 73:418-422[Medline]
- Dickinson GE, Tournier RE, Still BJ: Twenty years beyond medical school. Arch Intern Med 1999; 159:1741-1744[Abstract/Free Full Text]
- Dickinson GE, Mermann AC: Death education in U.S. medical schools, 1975-1995. Acad Med 1996; 71:1348-1349[Medline]
- Rappaport W, Witzke D: Education about death and dying during the clinical years of medical school. Surgery 1993; 113:163-165[Medline]
- Cassel E: The nature of suffering and the goals of medicine. N Engl J Med 1982; 306:639-645[Abstract]
- McFarland KF, Rollins EC, Gonzalez MF, et al: Dealing with death and dying. Med Educ 1994; 28:136-138[Medline]
- Bulkin W, Lukashok H: Training physicians to care for the dying. Am J Hosp Palliat Care 1991; 8:10-15[Medline]
- Miller FG, Fins JJ: A proposal to restructure hospital care for dying patients. N Engl J Med 1996; 334:1740-1742[Free Full Text]
- Barroso P, Osuna E, Luna A: Doctor's death experience and attitudes towards death, euthanasia and informing terminal patients. Med Law 1992; 11:527-533[Medline]
- Peabody FW: The Care of the Patient. Boston, Spaulding-Moss, 1956
- American Medical Association and The Robert Wood Johnson Foundation: The Education for Physicians on End-of-Life Care (EPEC) Curriculum. Module 4, 1999
- Sand RB, Blackall GF, Abrahm JL, et al: A survey of physician's education in caring for the dying: identifying training needs. J Cancer Educ 1998; 13:242-247[Medline]
This article has been cited by other articles:
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J. Setla and L. Watson
Medical Students as Hospice Volunteers: The Benefits to a Hospice Organization
American Journal of Hospice and Palliative Medicine,
October 1, 2006;
23(5):
392 - 398.
[Abstract]
[PDF]
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G. E. Dickinson
Teaching End-of-Life Issues in US Medical Schools: 1975 to 2005.
American Journal of Hospice and Palliative Medicine,
May 1, 2006;
23(3):
197 - 204.
[Abstract]
[PDF]
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R. J. Johnson, T. J. Gallagher, and F. D. Wolinsky
The Influence of the End of Life on the Extent of Informal Help Received by Older Adults
Research on Aging,
March 1, 2004;
26(2):
259 - 283.
[Abstract]
[PDF]
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ABSTRACT
INTRODUCTION
