Abstract
Abstract
Medical educators agree that training in end-of-life care (EOLC) must be an integral part of medical education at all levels. While progress in this area of education has taken place, many gaps still exist. This article describes the self-reported impact of a required one-week hospice rotation for third-year medical students.
Students completing their hospice rotation during a one-year period were asked to write an essay describing the most important lessons they learned. Qualitative analyses of the essays revealed 10 core themes and generated a coding schema for detailed analysis.
Students' essays reflected knowledge gained, emotional reactions, cognitive insights, and relationship-centered skills. Comments focused on the following themes: benefits and philosophy of hospice; impact on future practice; interdisciplinary team approach; management of pain and suffering; facts about hospice; personal impact; communication with patients and families; dedication and skill of staff; role of families; and value of home care. Students consistently recognized the significance of positive role models.
Learning about a new field of medicine helped broaden students' knowledge, skills, and beliefs, and expanded their assumptions about illness and suffering, the role of health care professionals, and the goals of medicine. Reflection and writing brought about self-awareness of the learning process itself. The study demonstrates that a robust clinical EOLC exposure can be effectively incorporated into undergraduate education and that student self-reports constitute a valuable mode of evaluation. Longitudinal assessments of trainees' competencies in EOLC are needed to optimize these educational endeavors.
Introduction
The seminal SUPPORT study revealed significant needs for improvements in care of individuals nearing the end of their lives. 4 These sentiments were reflected in the 1997 Institute of Medicine report identifying significant gaps in knowledge and skills in EOLC among health care practitioners. 5 Subsequent surveys of students, residents, physicians, and medical school deans, as well as a review of postgraduate training programs, confirmed widespread recognition of such gaps.6–9 A recent survey of residents indicates inadequate preparedness in key aspects of EOLC. 10
While undergraduate medical education in EOLC has expanded during the past decade, 11 the proportion of graduating students recognizing the inadequacy of EOLC and palliative care education has not decreased since 2005. 12 A 2007 study concludes that, in contrast to the UK, required clinical palliative care/hospice educational experiences for US medical students are “still rare and brief.” 13
Responses to the Need for End-of-Life Care in Medical Education
Reviews of end-of-life undergraduate curricula indicate lack of standardization and uniformity.11,14–16 Recent surveys show that most programs integrate EOLC into preexisting required courses.11,14,17 Experts in palliative medicine recommend that learners be exposed to the hospice model of palliative care.18,19 However, despite the growth of the field of palliative medicine in the US, few academic institutions offer their trainees bedside educational programs in palliative care.14,18 Existing programs range from brief inpatient hospice facility visits to didactic learning, home visits, and attendance at team meetings.20–29 Quantitative measures have most frequently been used to evaluate such programs; these have generally shown improvements in outcomes.9,15,19 Occasionally, qualitative evaluations have been used to elicit students' insights into the emotional and spiritual dimensions of EOLC, as well as the personal and professional impact of their experiences.30–31 A recent call has been made for both more robust EOLC educational programs and evaluations of such programs. 32
We undertook a qualitative evaluation of a one-week required hospice rotation for third-year students. Building on previous work, we gave students time to reflect and prepare written accounts about the most important lessons they learned from their rotation. The study was approved by the Institutional Review Board of the Albany Medical Center.
Description of the Hospice Rotation
In 2006, Albany Medical College initiated a required one-week hospice rotation for third-year students with the goal of providing structured clinical education in palliative medicine. The College, in collaboration with the Community Hospice, designed the curriculum to be implemented during the Internal Medicine clerkship.
The goals of the rotation are to expose students to care that is focused on the whole person, and to provide opportunities for interacting with dying patients and their families and with the multi-disciplinary team. Our aim is also to use reflective writing as a pedagogic method to enhance students' self-awareness, as well as to assess the effectiveness of their learning. The experiences shared by all students include a brief introduction to hospice services and philosophy, daily patient visits (primarily home visits), opportunities to talk with individuals and their families facing death, practice in identifying and describing the needs of terminally ill patients, participation in interdisciplinary team meetings, completion of assigned readings, and writing patient-specific assessments.
The final requirement entails writing an essay about the three most important things students learned during their rotation. We elected to use this type of evaluation to capture students' insights and observations as expressed in their own words.
Method
Sample
Of a total of 137 third-year students, 104 completed the rotation and submitted essays during the academic year of 2006–07. (The remaining students spent their clerkships out of town and did not complete a hospice rotation). In their essays, most students recounted more than the three items requested as they described what they had learned.
Analysis
Adopting an iterative approach characteristic of interpretation and coding of texts, 33 one of the authors (JB) reviewed the first 70 essays with the purposes of gaining an overview of the data and identifying recurrent themes. This review revealed 15 themes, ranging from students' emotional responses and opinions to descriptions or interpretations of facts; events; interactions; elements of care; and characteristics of patients, families, and staff.
The next analytic phase entailed independent coding of all essays by two of the authors (LJ and CB), applying the 15 established themes. For each theme, details of students' comments were recorded to reduce, to the extent possible, the influence of the researchers' biases by recognizing the students' “voices.” The next step in the coding process entailed formulating categories within each theme to group students' comments into meaningful units pertinent to both the particular theme and the overall study aim. Where differences in coding emerged, consensus was achieved, leading to re-conceptualization and reduction to 10 themes (Table 1) and a set of agreed-upon categories.
Using the refined coding schema, the essays were re-analyzed by the two reviewers. Concomitantly, a fourth faculty member completed an independent review of a random number of essays. Again, differences in coding were resolved by consensus. A final coding of all essays was conducted by one of the authors (LJ).
Frequencies tallied for each theme and category are used as the framework for our presentation of results and describe themes that generated comments by more than 30% of the students.
Results
Philosophy and benefits of hospice
The hospice approach to care and the benefits the students perceived of such care emerged as the most common theme cited. Several aspects of care were described; for example, “No one is ‘giving up’ on the patient,” “The goal of treatment is different,” “It is making the life [patients] have left the best it can be,” and “Hospice [care] is a success when, during patients' final moments, one can celebrate the beauty of life rather than the sorrow of death.”
Within this theme, frequent comments addressed the value of “caring for the whole person.” As one student put it, “This ‘art’ of caring for the whole patient is what sets hospice care apart and allows for the provision of comfort even in time of death.” The emphasis on enhancing comfort and quality of life, especially when cure is not possible, was also seen as important, as was the idea of non-abandonment, with one student sharing her discovery that “there is always something that can be done to help a patient.” Another student noted “My experience … taught me that hope is never lost—it is only transformed from a hope of a cure to a hope of a painless and respectable death.” Some students expressed appreciation of key hospice concepts, such as treating the patient rather than the disease, preserving dignity, valuing autonomy, and caring for the family. The notion that death is a natural part of life and does not represent failure was noted by many and expressed this way by one student: “The health care community has long viewed death as a failure … When physicians delay a patient's referral to hospice because of their fear of failure … we do a great disservice to the patient and their family.”
Professional Impact on Students
When reflecting on how their new knowledge about hospice care would affect their future care of patients, many students indicated that they had gained a better understanding of what to tell patients about hospice care and felt their exposure to such care would make them more likely to refer future patients to hospice. As one student commented, “A patient who only gets referred to hospice to die … misses out … by diminishing the ability [of hospice] to decrease [his/her] physical and emotional suffering.” Students also remarked about feeling better prepared to care for people with life-threatening illnesses; for example, “I have had the opportunity to speak with several dying patients and hear in their own words what the different types of suffering have meant to them … I will carry these experiences with me, and hope to better identify the suffering and needs of my own future patient at the end stages of life.”
Some students also reported that they had learned skills and approaches that will affect the way they care for all of their patients, not just those with terminal illnesses; for example, “Hospice care encompasses total patient care … I believe that these ideals also transfer to any patient care setting and I hope to continue to utilize the practices in the future.”
Interdisciplinary Team Approach
The nature and value of the interdisciplinary team was described by more than 60% of the students. Specifically, they remarked on the unique contribution of each discipline and the effectiveness of communication between team members. As one student commented, “It was so moving to see the doctors, nurses, home health aides, social workers, and volunteers … work together with a genuine interest in the patients' health, comfort, sanity, and happiness.” Another student observed, “It is important to learn the roles of all members of the health care team … to create open communication and respect among health care providers. This allowed us to see the struggles and difficulties of different professions so that we will be empathetic to their concerns when we are physicians.” Frequently, these insights were associated with the students' observations of the multiple dimensions of suffering, and the skills required by different team members to address those aspects of suffering.
Management of Pain and Suffering
Related to students' observations on the interdisciplinary team were their insights about the multi-faceted nature and management of pain and suffering. In particular, students noted the significance of identifying and managing all dimensions of pain and suffering: “I learned about the scope of suffering … the many ways a person can suffer … beyond the scope of physical suffering”; “I have learned about the meaning of suffering and healing”; and “Hospice puts all aspects of suffering … on a level playing field with physical health concerns because it realizes that these more abstract issues burden the patients and their families just as much if not more …” Still another student observed: “I learned that ‘comfort care’ involves the same high level of clinical reasoning … as curative care [and] the sources of suffering need to be thoroughly and methodically analyzed and treatments diligently selected.”
Oftentimes, students recognized the emotional and spiritual suffering by patients and the need for treating such suffering. Some students discussed the social or financial distress they observed, as well as the suffering that families endured as they cared for dying loved ones.
Facts about Hospice Care
Over half of the students identified new factual information they had gained, with many seemingly surprised by what they learned. For example, “I really had no idea what to expect. I pictured myself working in a facility, not unlike a nursing home, where [people] would be lying around … waiting to die … I assumed that there would be very little “medicine’ to learn. Most of all, I figured it would most certainly be a depressing experience. I'm glad to say that my presumptions were wrong on all counts.”
Several students indicated that they gained increased understanding of the types and scope of services offered by hospice and many commented that the rotation had revealed, and corrected, many previous misconceptions about hospice: “One of the biggest problems seems to be … the lack of understanding of … hospice on the part of doctors, hospital staff, and family …” and “It is really an avenue for continuing care … [and] treating the entire patient.”
Personal Impact on Students
Prominent among students' reflections on how they were affected personally by this experience was the impact of meeting and communicating with dying patients. These interactions were helpful in addressing students' discomfort with talking to and caring for dying patients, as well as for confronting their own mortality and fear of death. This is captured by one student, who wrote: “Dealing with my own inhibitions and fears … seeing and hearing how others are coping and all the services available … helps me address my own concerns.” Another student said, “Sharing in a patient's journey toward death and helping that person process the experience … seems to be the most touching and sensitive task one can be involved with.” Some students also remarked that the experience had changed their views of death and the dying process; for example, “Death really is an integral part of life … it is when we view death as an … intrusion … that fear truly interferes with the life-death continuum.”
Underscoring how the humanistic aspects of hospice care had affected him after two years in the classroom and almost one year on clerkship rotations, one student stated that “somewhere in that mix [of classes, grades, patients stripped of their pride and dignity], the humanity of medicine is lost. Hospice care is where one can rediscover it.”
Some students were struck by what they saw as unexpected serenity, love, optimism, and hope demonstrated by dying patients. Although their experiences varied, many described deeply moving encounters with patients. One example was, “Bearing witness to someone's long, full life or the tragedy surrounding their too-soon death was a remarkable thing to feel part of … their stories I will carry with me” and “Although she was unresponsive, I read and sang to her for 30 minutes as though she could hear me … I experienced a deep feeling of satisfaction.”
Communicating with Patients and Families
Students' observations of communication with patients and families mostly pertained to the significance of “just being there” with the patient or family and to the importance of listening. One student summarized these insights by saying, “Some of the best medicine does not consist of medications at all.” Another student observed: “On the floors and in outpatient care, there appears to be a need for speed. However, in hospice care, each moment seems prolonged … with … patience to let the patient speak and allow [the patient] time to absorb everything that is happening.”
Discussion
Several medical educators have observed that exposing students to the humanistic elements involved in EOLC is essential for the development of competencies and predispositions for “good doctoring.” These educators propose that students benefit from witnessing suffering and loss; forming close relationships with patients, families, and colleagues of different disciplines; understanding compassionate care; experiencing ambiguity; and learning to handle strong emotions. 21,31,34–38
Results from our analysis of students' accounts suggest that the above learning elements were often captured. Students commonly described powerful cognitive and emotional experiences that affected them personally and professionally. Aside from gaining new factual knowledge, students' vivid descriptions reflect a broadening of perspectives about dying, the impact of illness, the nature of suffering, and effective approaches to more fully meet patients' and families' needs.
Important sources for these new insights were the role models of hospice team members, whom students observed as experts providing compassionate care, addressing the multiple dimensions of suffering, and actively collaborating with colleagues. As others have observed from similar studies, positive role models are vital to any impact that EOLC has on the learner.31,34,35 The finding by Rabow et al. 16 that informal educational EOLC experiences among medical students were associated with more negative assessments of the educational quality brings into focus the vital need for formal EOLC education for effective learning.
Having had opportunities to listen to patients' and families' stories and to witness their suffering and grief, many students noted the “humanizing” aspects of hospice care in its emphasis on comfort and quality of life, alleviation of pain and suffering, respect for patient autonomy, and therapeutic relationships with patients and their families. From these interactions, students often discovered that confronting their own fears of death helped them see death as a natural part of life. This also led to a greater degree of comfort in caring for and building relationships with terminally ill patients. These findings support those reported in previous research.36–38
Reflecting on palliative care in relation to acute care, some students were struck by the value of taking the time to listen to patients and recognized that the physician's mandate involves caring for the whole person. They observed that healing, as distinct from curing, is an essential and often-achievable goal of medicine. For many, their experiences led them to believe that the hospice philosophy applies to care in all settings.
Generalizations of study findings are not possible, due to the small sample size and students' exposure to a single hospice program.
Conclusion
In summary, our data suggest that a one-week experience with hospice, as well as the opportunity for students to reflect on, and articulate in writing, what they learned, constituted valuable learning and met our goals for this educational intervention. Learning about a new field of medicine and new care concepts helped broaden students' knowledge, skills, and beliefs. This, coupled with intense emotional and existential experiences, challenged and expanded students' prior notions and assumptions about the goals of medicine, illness, and suffering, and the role of health care professionals. In addition, opportunities for reflection and “perspective-taking,” facilitated by probing into and describing feelings, reactions, and observations in writing, brought about self-awareness of the learning process itself. This supports notions presented by other analyses of students' narratives of caring for dying patients.31,39
Our results lend support to the use of reflective time as an evaluative method to allow us to better understand how EOLC exposure can be significant for learning and growth for physicians-to-be in the process of achieving salient competencies and confidence.8,10,20,32,40 Students' learning experiences in EOLC are needed to strengthen the ethos for such training in medical education. 29 The results of our study strongly support the proposition that “not educating the next generation of physicians in palliative care is not an option.” 32
Footnotes
Acknowledgments
The authors gratefully acknowledge the participation and contributions of the staff and leadership of Community Hospice who made this rotation possible. Many thanks also go to Joseph Wayne, M.D., Internal Medicine Clerkship director at Albany Medical College, for his support, and to Frank Thomas, M.D. for his assistance with the coding.
Author Disclosure Statement
No conflicting financial interests exist.
