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Special Theme: End-of-life Care: Education and Practice: SPECIAL THEME ARTICLES

“Face-to-face with It

Medical Students' Narratives about Their End-of-life Education

Wear, Delese PhD

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Abstract

How do we talk to anxious others about these things when we are anxious and untrained ourselves?

—A. C. MERMANN2,p.12

After all, physicians are reported to have an unusually high death anxiety that medical school does little to alleviate.

—J. HARDWIG3,p.30

Anyone who has worked in medical education knows how difficult it is to change the curriculum. The four-year medical curriculum in the United States, which has had little substantive change since the early 20th century, has endured constant barrages of competing claims for new or additional curriculum time. Some of the calls for change emerge from cultural trends external to medicine; others take the form of accreditation mandates internal to the profession. Of late, these curriculum recommendations include courses in managed care, multiculturalism, spirituality, and end-of-life/palliative care.

This essay is an exploration of end-of-life issues relevant to medical training and a call for thoughtful curriculum change. According to Field and Cassel, death is “conspicuous mainly by its relative absence” in the medical curriculum.4,p.207 Such absences, they maintain, are a reflection of a medical culture that “defines death as failure and ignores care for dying people as a source of professional accomplishment and personal meaning.” Moreover, U.S. medical education is grounded in a dominant philosophy—“diagnosis, investigation, and cure”—that is antithetical to the thrust of palliation and leaves “little room or respect for a focus on relief of symptoms and suffering.”5,p.1169 As such, end-of-life issues in medical training, including palliative medicine, are “small players in the academic political world.”5,p.1170

As a medical educator I am interested in medical students' experiences in end-of-life care, particularly what they have learned from such experiences and what they wish their education had provided to them before they cared for dying patients. During the spring term of 2001, I solicited narratives from fourth-year students via a mass e-mail to the entire class of 98 students, which described my interest in their experiences and clearly delineated an IRB-approved plan to protect their anonymity. I asked for personal accounts of their clinical experiences surrounding end-of-life care that focused on

  • ▪ their experiences with dying patients and their families,
  • ▪ obtaining do-not-resuscitate directives (DNRs) or other measures that guide end-of-life decisions from patients and families,
  • ▪ the skills and attitudes they brought to these encounters,
  • ▪ support they received from attending physicians and residents while working with dying patients, and
  • ▪ suggestions for the medical curriculum that would help prepare them for care of the dying.

Ten students volunteered with written accounts they sent to me through standard mail or e-mail. As I analyzed their narratives, which all dealt with experiences they had had during their third-year clerkships, I compared their reflections with the literature on end-of-life/palliative care in medical education. As such, the purpose of this qualitative inquiry was to generate data and explore it, not to test hypotheses or generalize across settings.6 In particular, I traveled back and forth between theories of a particular phenomenon—here, curriculum theories of how and where end-of-life care should be taught—and the subjective experiences of that same phenomenon: medical students' end-of-life experiences in clinical settings.

The themes that emerged from my analysis of students' writing provided four organizers for this essay. In the four sections devoted to these organizers, I combine excerpts from students' writing and from the medical education literature, the latter used to amplify or interrogate what the students had to say. (All students' names have been fictionalized.) The four organizers are (1) students' worry and uncertainty about end-of-life care, (2) guidance and role modeling in end-of-life care, (3) preparation for end-of-life care, and (4) conclusions and recommendations for the medical curriculum.

STUDENTS' WORRY AND UNCERTAINTY

I stood frozen in the patient's room.—KATHRYN

In their study of end-of-life curricula in medical education, Billings and Block7 found most to be elective, preclinical, and focused primarily on knowledge rather than skills and attitudes. According to one study, the lecture is the primary teaching strategy in 83% of courses that address death and dying, with limited patient contact in most.8,p.1266 Thus, a medical school may “address” issues in dying in the lecture hall or conference room but not provide any formal instruction during students' clinical rotations. Widespread agreement exists that placement of end-of-life curricula preclinically and only preclinically is an unsound curricular decision, regardless of the amount of time allotted to such inquiry.8,9,10,11 That is, preclinical course work is useful as foundational to an ongoing examination of end-of-life issues in the medical curriculum that spans into the clerkship year and beyond.

Indeed, third-year clerkships are training grounds not only for clinical knowledge and skills but also for the attitudes and values medical educators hope students will acquire. The absence, then, of guided experiences in care of the dying makes a strong statement about its relative importance to medicine. Kathryn, one of the students in this study, described a scenario illustrating where her preclinical end-of-life education receded as her contact with human patients began. She states that during her first experience with a dying patient,

We ordered a chest x-ray and CT scan and we quickly got our answer. There were metastatic nodules covering the entire lung fields, and also a pulmonary embolism…. After discussing this with the attending, he casually told the intern and myself to tell the patient she had end-stage cancer, that we would be doing tests to find the source, and that was all we could do for her. I could not believe it. Finally I understood the difference between knowing and understanding.

Later in the room Kathryn and the intern delivered the bad news to the patient and her family. The intern was “very sensitive” in the way he provided information and answered questions, but then left Kathryn alone in the room. That is when she “stood frozen,” not knowing what to do or what she expected to happen—“maybe for lightning to strike and for everything to be okay again.” Her account was similar to others'. Jack, another student, given the task of discussing a patient's DNR status with him, said he had “no idea what to say.” After exchanging pleasantries, he did, nonetheless, engage the patient in a conversation about options, asking such questions as “If your heart stops, do you want us to try to start it again with CPR and drugs?” or “If you stop breathing, would you want us to use a machine to help you breathe?” The patient said yes. Unfortunately, and quickly, Jack came to realize that because of what was left unsaid he had “doomed” his patient, who ultimately had a horribly prolonged death:

And why? Because I had used phrases like “If your heart stops, do you want us to try to start it again?” and “Would you like a machine to help you breathe?” The truth would have sounded more like “You know, you are most likely going to die from this. Further treatment truly is futile and we want to make you as comfortable as possible, and we don't think aggressive treatment will do that.” But I didn't know any better. I made it sound like we can help you or you can die. In fact, a truer portrayal would have been “You can die peacefully in comfort or we can draw this out, steal your dignity, and assist you in dying miserably.”

Beth, another student, similarly wrote that she “did not have enough medical experience to explain the necessity or issues surrounding intubation, respirators, etc., to concerned patients, and certainly did not have the medical knowledge to advise patients on such major decisions,” and that she, too, was “left to her own devices” in caring for a patient with end-stage lung cancer. She continued:

I did not want to offend this man, and I certainly did not know how to broach the subject of his prognosis without stepping on unfamiliar and scary territory…. At this point, I would like to say that although I had spent some time reading and learning about end-of-life care, I was completely unprepared for this situation. No amount of reading or writing or discussion could soften the discomfort I had in this interaction. I felt—stumped.

“Helpless” was the term Nadia used to describe her first attempt to obtain a DNR status from a patient:

I tried to be as informative as I could, while still remaining empathic and supportive of their emotional needs. I felt my words dancing around the subject at hand … so afraid of hurting their feelings or overstepping my bounds. As medical students we become so accustomed to the common retort, “I don't know, I'll ask the resident,” that we never really know what it feels like to fumble…. It was at this point when I realized that no matter how much I had been taught in the classroom about the medical—legal jargon of palliative care/end of life issues, it was this very real patient encounter which taught me the most.

Jack, Kathryn, Beth, and Nadia are not third-year oddities. In fact, Jack's I didn't know any better, Kathryn's I stood there frozen, Beth's I felt stumped, and Nadia's I felt so completely helpless are common student parlance regarding what amounts to a baptism-by-fire initiation into clinical care of the dying. In one study of third-year medical students' reports of their clinical training, all of them reported that they had cared for a dying patient, yet 41% had not observed a physician talking to a dying patient, 35% had never discussed care of a dying patient with their attending physicians, and a large majority had never witnessed a surgeon telling a family that someone had died.10

Yet even as such charges abound that medical education fails to provide students with the knowledge, skills, and attitudes needed to care well for dying patients,4,p.6 other data indicate that medical schools are addressing such issues. According to data from the Association of American Medical Colleges (AAMC), in 1998, 122 U.S. medical schools claimed to teach about death and dying as part of an existing course, six schools required such teaching in a separate course, and 50 schools offered it as an elective.12 Moreover, in that same year, 68% of U.S. medical school graduates stated that they had received “appropriate” training in death and dying.13 Such data, however, offer little to investigators trying to uncover what really happens in such courses, even when the topics addressed are delineated. Moreover, the disclosures of Jack, Kathryn, Beth, and Nadia—all of whom had had preclinical curricular exposures to end-of-life issues —indicate how crucial it is that curricular experiences continue into the clinical arena. If it is true that clinical faculty would never expect students to perform a procedure without first having them watch one, then practice it with close guidance, why would they assume that students can perform, on their own and without support, one of the most difficult tasks physicians are asked to do?

GUIDANCE AND ROLE MODELING

The attending left, the team followed.—CYNTHIA

Ample evidence exists supporting medical students' desire for end-of-life experiences,14 yet in clinical settings students often do not have such experiences in educationally sound ways. Even after expressing confusion and helplessness, none of the ten students remarked that they wished they could have learned how to “be” with dying patients from observing skilled and compassionate doctors do it. It never occurred to Sam, for example, to look to his senior resident for guidance on how to talk to dying patients. “For the most part,” he wrote, “residents are so busy that, though they may do a fantastic job at managing the patients' health problems, they do not have copious amounts of time to talk…. This is not to say that the residents are not interested in the patients; it is the 17 other patients on the service that prevent such conversations.” No one ventured into the possibility that residents and attending physicians lack training themselves and are “often quite uncomfortable and uncertain about how to assess pain, break bad news, discuss treatment options (including foregoing treatments), be supportive in settings where cure or even prolongation of life is not possible, elicit or respond to strong affect, assess or treat a grief reaction, conduct a family meeting, or work with an interdisciplinary team.”7,p.734

Another student, Cynthia, described an end-of-life scenario when she felt very much alone and untethered from her teachers' guidance as she cared for a patient and provided information to the patient's family—clearly a “sink-or-swim” scenario for this beginning swimmer. She described how during her medicine rotation she began caring for Mrs. D, who had been admitted to the ICU by her pulmonologist for pneumonia. One morning Cynthia arrived to find the patient on a ventilator: “Apparently she had an MI during the night and was also in septic shock. She was in multiorgan failure. I met her daughter and husband that morning and explained what was going on as well as all the new labs that had come back. I was surprised to find out that I was the only one who was giving them all the details when it came to her labs and explaining them to her family.”

A few days later Cynthia left the ICU to begin her surgical rotation but continued to stop in to see her former patient. Eventually Mrs. D's family decided to withdraw life support and to “let her go.” When the decision was made, Mrs. D's family called Cynthia, the medical student, not the attending physician. Cynthia was stunned:

I was shocked by the fact that none of the doctors that were following her were there. I was totally confused as to what I was supposed to do next. I ended up just offering my condolences to the family and left for a lecture. I convinced myself that they needed time alone. As I was walking out of the ICU, I felt like I was just running away. I felt as if I should be crying but I wasn't. I just felt numb and detached.

Was this scenario merely reflective of attending physicians with too little time for too many patients? Or do attending physicians assume that end-of-life issues have been addressed elsewhere in the curriculum and that students are competent to address such issues without them? Or is it what Billings and Block7 suggest above, that physicians are often “uncomfortable” and “uncertain” about matters pertaining to dying, about telling families what is in store and talking with them about foregoing treatments, and about “how” to be supportive. In fact, Larson and Tobin maintain that physicians are “less likely to initiate end-of-life discussions when they believe they lack the needed interpersonal skills.”15,p.1574 Moreover, they cite research that found residents feeling competent discussing DNR orders but “less competent” discussing a hospice referral and “not competent” discussing withdrawal of treatment or conducting family conferences.

Or was there something else going on here that reflects physicians' reluctance to spend time and resources on patients who will not recover? Sam described how socialized he had become to “doing something,” and the “helplessness and confusion you feel when you are not. It's sort of like, I can't help a mentally retarded person become unretarded … I can't help a dying person not to die. But sometimes we think we're doing something and we're really not doing anything. Anything beneficial, that is.” Kathryn reported a different source of feeling helpless as she witnessed first a “sensitive” intern talk to the patient and the patient's family, then the attending physician, standing at the bedside, discuss the 0% survival rate of colon cancer for patients at her stage:

Then he talked about all the things that should have and could have been done to prevent the disease and its spread. He asked the patient if she wanted a tube shoved down her throat if she needed help to breathe and if she wanted us to pound on her chest if her heart stopped. The patient was horrified, said no. The patient began silently crying and the attending left, the team followed. I turned around for a moment to give her a sympathetic smile, but she was already looking away.

What was this medical educator's message to Kathryn?

While this attending physician did assume personal responsibility for end-of-life discussions (cruel as it was), students reported how other attending physicians delegated this task to residents and students. Jack's “kind, good-hearted internist who always treats students with respect and who takes extra time from her day to further teach the students” asked whether Jack “would like to discuss the patient's DNR with him,” and left him alone to do so. Nadia's resident was more directive: she was sent, alone, to “obtain a DNR status from the patient.” Sam reported discussing a terminal patient with the resident when the patient's fate—discharge to home care—was decided: “I am not quite sure how it happened,” Sam disclosed about his conversation with the resident before seeing the patient, “but we both knew that I was going to break the news to the patient.”

What is the thinking behind residents' and attending physicians' decisions to let students—often alone—deal with end-of-life issues with patients? Without access to such reasoning, I am inclined to agree with Hill's observation that “a well-established pattern of neglect of medical education is in the care of the dying. The cumulative evidence is that while medical educators could identify the content of this education, they failed to design effective means to provide it.”8,p.1265 Or as Grauel et al. argue, “Competence in the care of the terminally ill is an area that many physicians have considered to be of low priority,”14,p.144 and the experiences the students disclosed reflect this low priority, for whatever the reason.

PREPARATION FOR END-OF-LIFE CARE

Experience can never be taught.—ROBERT

Fourth-year student Robert had compelling beliefs about preparation for end-of-life care that reflected his peers' beliefs and illustrated an ongoing schism between the biologic and the psychosocial, between skill and craft, hard and soft, objective and subjective. He wrote,

In my opinion there is nothing any medical school curriculum can do to prepare you for dealing with the dying patient. Sure, you can learn the semantics and the state laws regarding [DNRs, advanced directives, and living wills], but you will still feel helpless when you sit down with that dying patient and/or his family and try to convey warmth and sympathy while at the same time trying to get the cold, hard facts that you need regarding his impending death. This is something that can only be learned via experience, and even experience doesn't ensure a positive encounter.

Nadia similarly argued that “experience can never be taught in the classroom”; Beth believed that end-of-life issues “can only be learned through experience,” and “that no amount of reading or writing or discussion could soften the discomfort I had in this interaction.” Vince similarly contended that “you can't learn to care for someone in a class.” Justin wondered “how students are supposed to deal with dying patients unless you actually deal with dying patients.” Tom labeled the idea of learning how to care for a dying patient anywhere other than in a clinical setting “ridiculous.”

Such beliefs about the primacy of experience in learning how to care for dying patients coincides with what the literature recommends as a crucial dimension of end-of-life curricula, which dramatically contrasts with the preclinical placement of most end-of-life curricula.7 In addition to wide agreement on that point, the literature also consistently argues that end-of-life learning, in all its forms, should be integrated rather than isolated in the curriculum.4,5,7–9,14,16–18 “The best learning grows out of direct experiences with patients and families,” Billings and Block argue, so that students “develop a sense of intimacy and manageable personal responsibility for suffering persons.”7,p.736 This hands-on approach is cited most often in the literature as a strategy to “reorient” medical education to end-of-life care, with required rotations in hospice facilities, nursing homes, or the homes of dying persons.

In addition to those elements, some medical educators add “a flexible teaching format … interdisciplinary discussion, [and] attention given to attitudes and beliefs as much as to knowledge about palliative care techniques.”19,p.158 Other common recommendations, such as those offered by the AAMC's Medical School Objectives Project, include lectures and small-group discussion in such areas as death and dying across cultures, communication skills with dying patients, and spirituality.20 Still others argue that for medical students to care for dying patients with skill and compassion, they must develop “an awareness of [their] own attitudes, feelings, and expectations regarding death and loss.”7,p.735

Indeed, several of the fourth-year medical students who so adamantly recommended the need for clinical experiences also mentioned another desired educational component as they learned care of the dying. Nadia said that she “would have loved to have had a resident or attending to ‘debrief’ with after this experience.” She believed that students need an “outlet to speak about attachment to patients … it's often viewed as ‘unprofessional’ to cry with our colleagues about your patients. This sort of repression breeds an unhealthy attitude toward the dying patient. Many physicians maintain the belief that death = failure … and these are our role models!” Fins and Nilson describe one method for residents to reflect while they are learning clinical skills:

To help the residents reflect upon their experiences with loss and bereavement, we inaugurated a course by reading Sherwin Nuland's account of his brother's death from colon cancer. Using this poignant narrative as a common text, we considered how a clinician's discomfort with death and dying can adversely influence both the medical care he or she provides and his or her relationships with dying patients and their families.21,p.663

Medical students, who are at an even earlier developmental phase than residents, would similarly benefit from such inquiry as they care for dying patients. Often for the first time during their clinical rotations they confront “their own fears and anxieties related to death and to caring for the dying. Keeping journals about their thoughts and discussing them with faculty members and fellow students may help with this, as may role-playing exercises.”9,p.A56 Several students in this study offered similar curricular initiatives for addressing end-of-life issues. Delegating the “medical—legal jargon” to classroom settings, several acknowledged that role playing and other “philosophical discussions about death and bereavement” might be personally helpful to them as they sorted through such issues, without adding “structured lectures or time to an already overfilled curriculum.” Beth proposed that “an occasional vignette or thought-provoking blurb inserted into the drabness of a lecture-filled day (perhaps in the form of an e-mail?) may be enough to encourage students to sit back and listen, despite the hurry and hustle and cram of medical education.”

CONCLUSIONS AND RECOMMENDATIONS

It's not what you say but how you say it.—KATHRYN

Both the current literature on education for end-of-life care and the medical students' narratives agree that clinical experiences with dying patients are vital. Both data sets indicate that modeling is critical, and that medical educators should acknowledge the unspoken emotional, psychological, and sometimes spiritual difficulties students encounter when first facing dying patients. The literature cites the importance of interdisciplinary work in care of the dying more than the students did, although students did suggest hospice care—explicitly based on a team approach—as a potential source of learning. The literature is also quite clear about the desirability of integrating end-of-life principles and experiences into the curriculum rather than adding additional courses to the already crowded curriculum.

Moreover, when Kathryn said “it is not what you say, but how you say it” in reference to interactions with dying patients and their families, she was referring, perhaps, to medical education's failure to provide students with an ethos for end-of-life care. Too often medical students witness residents who believe that terminally ill patients do not wish to discuss their illness with their physicians.22,p.691 Too often students witness attending physicians who are struggling with their own feelings of uncertainty and vulnerability, for themselves and their patients, and fail to communicate such feelings with students who are learning from them. Fourth-year medical student Vince observed this phenomenon, and described it as “scientizing” end-of-life communication. He wondered whether this clinical approach

makes the doctor feel better mostly and [whether it] is used to confuse the patient into not having real feelings until they come out of the scientific stupor sometime at home (and look things up on the Internet)…. I think students may latch onto the bits of scientific knowledge at stressful times like breaking bad news, and I don't know if this is a response that is natural or that is taught by example.

Seravalli writes eloquently on his own struggle with dying patients, understanding that “the process of death can release overwhelming emotions not only in patients but also in physicians…. Perhaps, as a result of their education and conditioning, physicians are afraid to feel helpless and to project hopelessness to their patients.”23,p.1729 He suggests “what a help it might be if physicians were to spend a few minutes in the room where death has just occurred trying to find a place for it in their personal and professional lives.”p.1730 Abraham Verghese candidly writes of his similar discomfort, no doubt expressing sentiments of many other physicians:

I had always felt inexpert when a patient was near death…. Give me a patient with massive gastric bleeding or ventricular fibrillation and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack. I, who till then have been supportive, involved, can find myself mute, making my visits briefer, putting on an aura of great enterprise—false enterprise. I finger my printed patient list, study the lab results on the chart, which at this point have no meaning. For someone dealing so often with death, my ignorance felt shameful.24,pp.363–4

What a help it might be for students to witness their teachers engaged in such reflection!

On the other hand, what Kathryn might mean by “It's not what you say, but how you say it” is that “textbook” learning, including preclinical courses in communication strategies or death and dying classes, is less helpful than bearing witness to the words and demeanor of a skilled and compassionate physician at the bedside. Vince spoke of being with such an attending physician who delivered a terminal diagnosis: “I was more aware of a gestalt in that room than anything else … a lot of it had to do with just being sincere. That really came out.” However, such beliefs that classroom experiences leave much to be desired when compared with the “real world” may be based on prior learning that relied too heavily on factual data, stage theories, or cookbook approaches to communication skills to “teach” medical students about end-of-life care, rather than being based on classroom experiences developed for personal and professional reflection on death and dying. That is, students' (and perhaps many medical educators') reluctance to believe that anything worthy can emerge from classroom attention to end-of-life issues may be more of a statement about our inadequate curriculum choices and teaching strategies than about the ability of meaningful classroom-based end-of-life curricula to have an impact on later clinical experiences.

I am reminded of literary critic Anatole Broyard's comments about nonfictional (versus fictional) accounts of illness: that it is too “businesslike,” telling readers “a lot about the waking life of the patient, but not much about his day-dreams or fantasies, about how illness transfigures you.”25,p.14 When confronted with their first dying patient, medical students quickly come to realize that the “businesslike” approaches to end-of-life issues often found in the preclinical curriculum have very particular, and sometimes limited, uses at the bedside. Or, as Hill points out, this kind of data-driven instruction reveals “how comfortable medical schools continue to be with the lecture as the preferred method of teaching, emphasizing, as a result, the content of the curriculum, while neglecting the process of learning. That, in turn, suggests that the impediment to proper education in the care of the dying remains institutional as well as attitudinal.”8,p.1266

End-of-life care presents a real opportunity for medical educators to make meaningful, substantive changes in the medical curriculum with far-reaching effects on patient care. But such commitment requires massive reorientation for clinical faculty, too, if they are to provide the kind of role modeling crucial to the task at hand. A changed curriculum, one that includes content amenable to lecture-driven and to discussion-driven formats requiring students to reflect on themselves and their profession, will have limited impact without role models willing to share their past and current struggles caring for dying patients. Similarly, planned experiences with hospice care can easily remain at the level of technology without clinical faculty willing to engage with students in dealing with the knottier issues that trouble and confuse them.

Bioethicist John Hardwig suggests that “if physicians are not suited for the job, then we ought to ‘demedicalize’ death.”3,p.17 Further, he proposes that maybe doctors should not be in charge of caring for dying patients, and should become “ancillary personnel” because their expertise is just “too peripheral to the concerns of the dying. The hospice movement has taken steps in that direction, but the care of a much broader spectrum of dying patients would need to be removed from the hands of physicians.”p.30

Now, I don't think there are many medical educators who want to relinquish care of the dying to other health care professionals. But if we do not face the challenge of curricular change, others outside the profession will take on care of the dying as part of their professional identities, as Hardwig suggests. Yet even if we do take up the challenge, another caveat looms in the curriculum decision-making arena for medical educators: without thoughtful deliberation, end-of-life curricula can become just another add-on to satisfy accreditation requirements, an add-on that does not change the basic curative-only ethos of medical training. Integrating end-of-life issues and experiences throughout the curriculum, recruiting role models with a commitment to end-of-life education, and listening to how students actually experience the curriculum must be the foundation on which end-of-life curriculum planning begins, and continues.

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