Skirting the Issue of End-of-Life Care

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Conference Summary: Skirting the Issue of End-of-Life Care

Hope Vanderberg, MA, Assistant Editor

[Medscape Med Students, 2001. © 2001 Medscape, Inc.]

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http://www.medscape.com/medscape/MedStudent/journal/2001/v03.n03/mms0517.01.vand/mms0517.01.vand.html

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Introduction

Medical students are taught how to diagnose and cure, how to prevent disease and prolong life. But the one affliction often left out of lectures and textbooks is the eventual, untreatable condition we all must face -- death. Like parents covering their children's ears when the "D" word comes up, medical education appears to be skirting the issue of end-of-life care with medical students. Predictably, the result is that when it comes to dealing with dying patients, medical students -- and doctors -- are often at a loss.

Although some medical school and residency programs may give the subject of death and dying a couple of lectures-worth of attention, many medical students enter the field unprepared to handle the realities of caring for patients near death. And with the senior citizen population expected to double to 80 million over the next 30 years as the baby boomers and their parents reach age 65, the medical community simply can't afford to avoid the issue much longer.

Lessons Learned

Kirsti A. Dyer, MD, MS, a primary care doctor in northern California who presented the talk "Dealing With Death and Dying in Medical Education and Practice" at the American Medical Student Association's (AMSA) 51st Annual Convention in March 2001, remembers her own rude awakening to this lack of guidance in end-of-life care. As a medical student at University of California, Davis, from 1988 to 1992, her training amounted to little more than negative reinforcement of any emotional expression in the face of death. She recalls the disapproving look of the attending physician when, as a third-year student, Dyer cried after the partner of an AIDS patient who had unexpectedly died thanked her for all of her help on the case. That was her first "lesson." Later that year, on a surgery rotation, a postoperative patient started to arrest in front of Dyer and the surgical team, just as the intern was presenting the case. After several minutes of running CODE Blue (an organized delivery of advanced cardiac life-support techniques), the patient died. The team moved right on to the next patient, despite the fact that even the intern was visibly disturbed. Dyer remembers thinking, "Couldn't we just take 30 seconds?"

Recent studies have documented this lack of attention to end-of-life care in medical schools. Only 26% of residency programs in the United States offered a course in end-of-life care in their curricula in 1995, and 15% of programs offered no formal training at all, according to a 1995 study by Hill.[1] More recently, Rabow and colleagues[2] reported that information on end-of-life care was absent in nearly 57% of the 50 top-selling textbooks from multiple specialties, and was covered only minimally in 19% of textbooks.

Medical students can attest to this. When Kani Ilangovan, a second-year medical student at the University of Illinois, Chicago, and former coordinator of the American Medical Student Association's (AMSA) Interest Group on Death and Dying, approached the director of medical education at her college about expanding end-of-life training, she was told that there simply wasn't room in the curriculum to give the topic any more attention, and that she would have to seek further training outside of school. "A lot of medical schools have 1 or 2 lectures -- they'll teach the 5 stages of dying and think they've done their duty," says Ilangovan. "But I don't know of any schools that go the further step of teaching the practical skills to address terminally ill patients' needs."

What's missing from the curriculum, Ilangovan says, is the practical experience -- the hands-on learning required to deal with the unexpected emotions of the patients and of yourself. For instance, most medical students will have to deliver bad news at some point, such as explaining a terminal diagnosis to a patient or notifying a family of a patient's death. Yet, Ilangovan pointed out just after attending Dyer's presentation at the AMSA convention, "Until she [Dyer] told me today, I had no idea how to pronounce a death. And that's something we're going to have to do."

Changing Roles

Students need to be prepared to deliver a terminal diagnosis and to conduct a family meeting about the diagnosis or the death of a patient. "How you tell a family that their loved one died can have a significant impact on their grief response," says Dyer. Often, delivering good end-of-life care is a matter of basic communication skills. Physicians need to pay close attention to the words they use, the setting they pick in which to give bad news, and the attitude with which they approach the subject. They need to be prepared to respond appropriately to the patient's or family's reaction, and to the religious/spiritual and cultural issues that often arise.

One terminally ill patient told Ilangovan that what patients want most from physicians is more human interaction and more courage. "Sometimes the doctor is so afraid of saying the wrong thing that they don't say anything at all," Ilangovan explains. Too often, physicians haven't been given the skills to address more than their patients' physical needs. So when faced with a dying patient, Ilangovan says, "We're left feeling kind of helpless instead of feeling like there are things we have to offer. We're just the bearers of bad news -- we're not the comforters."

But should physicians be consolers? Many believe that this is the job of the nurses, social workers, or hospital clergy. The idea of the physician as one who offers solace may sound radical, even a bit inappropriate. But before 20th-century medical advances made diagnosis, treatment, and cure the focus of physicians, it was the norm. "This is going back to very old medicine where the only thing a physician could do was hold the patient's hand," says Dyer.

Advances in medicine and technology have enabled the modern physician to do much more than hand-holding. But the same medical developments that have allowed physicians to prolong life have also changed the nature of death. Most people in developed nations now die late in life, through an often long and painful process that many physicians find themselves unequipped to navigate. And in an era in which so many illnesses can be treated or cured, there is a tendency for physicians to view the death of a patient as a personal failure -- one that some want little to do with. This may be one reason why medical education has shied away from end-of-life issues. "Schools like to promote the image of doctor-as-savior," says Ilangovan. "They don't want to stress the limits of medicine, they want to stress what medicine can do. They want to make us superheroes."

Terminally ill patients, however, don't want superheroes for physicians. What they want, according to a study by Steinhauser and colleagues,[3] is more communication with their physicians and the opportunity to prepare for their deaths. The baby boom generation has seen what end-of-life care was like for their parents and grandparents, and they're making it known that they expect more from their doctors when their time comes. Future physicians had better be prepared.

What Lies Ahead

In the past several years, the number of national organizations dedicated to end-of-life-care issues has skyrocketed from 3 to 20, and community coalitions are springing up across the United States as well, according to a report by Phillips.[4] Recent legislative changes also indicate a growing movement to improve end-of-life care. In December 2000, Congress passed the Benefits Improvement and Protection Act (BIPA), which expanded the eligibility criteria for patients to enter hospice care, and will increase hospice payment rates by 5%. And in 1997, the Institute of Medicine appointed the Committee on Care at the End of Life, which promptly recommended that health professionals and educators initiate changes in education to improve physicians' ability to care well for dying patients.

There are some signs of change in the medical education arena. The University of California San Diego (UCSD) has integrated palliative care into their curriculum. According to the Association of American Medical Colleges, end-of-life education at UCSD begins early, with first-year students accompanying doctors when they explain bad news to terminally ill patients. By third year, students are required to have hospice and palliative care experience. The Medical College of Wisconsin received a $998,000 grant from the Robert Wood Johnson Foundation in 1999 to open the End of Life Physician Education Resource Center, which provides end-of-life care educational materials and resources to course directors, teaching faculty, CME directors, and curricular deans. And current program requirements of the Accreditation Council for Graduate Medical Education include end-of-life care instruction for residents in several disciplines, including internal medicine, neurology, and family practice geriatrics.

For the majority of current medical students, however, end-of-life care education is likely to consist of a few lectures or handouts, a couple of uncomfortable moments during rotations, and one big shock when they enter their profession. Some students may not have a problem with the lack of attention given to end-of-life care in medical school -- many may not even notice its absence because the subject of death is often taboo. When Ilangovan tells other students about her interest in working with terminal patients and improving end-of-life care training, a typical response is, "Why do you want to do that? It's so depressing, we can't really do anything about it." But with the aging of the population, today's medical students will be caring for dying patients in unprecedented numbers over the next 30 years, and turning a blind eye to end-of-life care is no longer an option. Ilangovan warns, "It's something that we all need to face."

Additional Resources

Dealing With Death and Dying in Medical Education and Practice

http://www.journeyofhearts.org/death_dying/

Handouts from Dr. Dyer's presentation at the AMSA convention are available online.

AMSA Interest Group on Death and Dying

http://www.journeyofhearts.org/death_dying/

This student-run group offers resources such as a curriculum guide to end-of-life care and a nationwide list of mentors from the Project on Death in America Faculty Scholars Program.

End of Life Physician Education Resource Center

http://www.eperc.mcw.edu/

Funded by the Robert Wood Johnson Foundation, this site serves as a central repository for educational materials and information about end-of-life issues.

Project on Death in America

http://www.soros.org/death/index.htm

Resources include books, news, and upcoming symposiums on palliative care.

On Our Own Terms

http://www.pbs.org/wnet/onourownterms/

Bill Moyers' public television series took him to the front lines of the movement to improve end-of-life care.

Journey of Hearts

http://www.journeyofhearts.org/

Dr. Dyer's Web site offers support and resources for those dealing with grief and loss.

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References

Hill TP. Treating the dying patient. The challenge for medical education. Arch Intern Med. 1995;155:1265-1269.

Rabow MW, Hardie GE, Fair JM, McPhee SJ. End-of-life care content in 50 textbooks from multiple specialties. JAMA. 2000;283:771-778. Available at: http://jama.ama-assn.org/issues/v283n6/abs/joc91365.html.

Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476-2482. Available at: http://jama.ama-assn.org/issues/v284n19/abs/joc00645.html.

Phillips DF. End-of-life coalitions grow to fill needs. JAMA. 2000;284. Available at: http://jama.ama-assn.org/issues/v284n19/ffull/jmn1115-3.html.

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Hope Vanderberg is an Assistant Editor at Medscape.