The Ethics of the Unwelcome:
Teaching about End-of-Life Issues

Delivering bad news will always be a part of medicine. The good news is that medical students at Michigan are learning how to do it better.

BY KIM CLARKE

Mel Barclay

Mel Barclay, M.D., is driven by memories.

The images are all there: The hospital room. Bewildered, grieving, family members. And a young medical intern clumsily explaining that their loved one has died.

"I remember the patients' names to this day," Barclay says.

More than 30 years after his internship at Detroit Receiving Hospital, Barclay, an associate professor of maternal and fetal medicine, remains convinced that he compounded families' pain and shock with his ham-handed efforts to deliver the news they did not want to hear. "Those poor people I had to tell it to," he says, lowering his voice as if to hide the decades-old sadness.

He has another memory of those days. After all the reviews, the clinical discussions and post-mortem meetings, no doctor or nurse asked about those patients' families.

"Nothing about, 'How did the family take it? Who told the family?'" he says. And he can't forget thinking to himself: There has got to be a better way to do this. Medical students at the University of Michigan today are benefiting from Mel Barclay's troubling memories. Teaching about end-of-life issues, including how to break news to families, is receiving increased attention, both as a medical issue and an ethical concern at Michigan. In fact, a whole spectrum of ethical issues in clinical practice, including such matters as confidentiality, informed consent, dealing with medical mistakes, health care rationing, caring for the underserved, historical perspectives on medical technology and racial inequities, and how the trust-based relationship between patients and their physicians creates obligations for those physicians, are being dealt with by medical students as part of their education at Michigan thanks to the interest of a number of faculty in introducing such issues.

Third-year students in Barclay's classes may be challenged, for instance, with the discomforting task of telling a woman, jubilant about her much anticipated and longed for pregnancy, that her 12-week-old fetus has died in the womb. Elsewhere in the Medical School, third-year students in their surgery rotation are forced to wrestle with how to tell an older woman she has life-threatening rectal cancer.

"We teach them to say 'cancer.' Don't say 'tumor.' Be real, concrete and specific, so a patient doesn't say, 'I don't have cancer, I have a tumor,' " says Lisa Colletti, M.D., coordinator of the clinical clerkship in general surgery. Colletti and her colleagues see nothing but good coming from these challenging new lessons that teach students to deal with issues ranging from placing a father into a nursing home to removing a sister from life support.

David Stern

"So much training is focused on preserving life and not on the acceptance of the way of dying," says David Stern, M.D., Ph.D., assistant professor of internal medicine. He considers end-of-life care — moving from curing to caring — to be among the top three ethical issues facing students, the others being informed consent and everyday right-and-wrong decisions.

As the post-war baby boom begins to gray, and advances in technology prolong life, end-of-life issues are among those ethical issues in the medical curriculum that are gaining a great deal more notice. The American Medical Association has established a two-year education program known as EPEC— Education for Physicians on End-of-life Care. An offshoot of EPEC, which is run through the AMA's Institute for Ethics, will be a resource guide for those who teach end-of-life issues.

Evidence abounds that end-of-life matters remain difficult for both physicians and medical students. A 1997 survey of fourth-year medical students at Mayo Medical School and Georgetown University School of Medicine found that only 41 percent of students felt their education about end-of-life issues had been adequate. Eighty percent said they wanted to learn more about addressing such issues.

A more extensive nationwide study carried out in the early 1990s at five teaching hospitals found shortcomings in communication and care in treating seriously ill patients in their final days of life. Funded by the Robert Wood Johnson Foundation and known as SUPPORT— Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments — the study found patients' final days were spent in pain, with their opposition to prolonged care often disregarded.

For U-M medical students, end-of-life issues are initially covered in their second year in the Introduction to the Patient (ITTP) course, a two-year program that covers ethics, social and cultural themes, and exam-room encounters with individuals trained to portray patients. End-of-life issues include medications, support services, nursing needs, religious considerations and pain control. Communication with the family also is a critical skill. "As the patient nears the end of life, you often begin caring for the family as much or more than the patient," Stern says.

Susan Dorr Goold

Susan Dorr Goold, M.D., who coordinates ethics education in the Medical School, says teaching end-of-life issues goes well beyond covering assisted suicide and the philosophies of Dr. Jack Kervorkian. "I try not to focus on just the headline ethics. On a practical level, you want to prepare doctors for what they're going to face every day. By every day, I mean how do you talk to a family about putting a loved one in a nursing home," says Goold, assistant professor of internal medicine.

What really matters at the end of life," adds Stern, "is understanding what patients want. Is it dying at home? Is it dying at the hospital? Is it kicking and screaming? To me, it comes back to the doctor-patient relationship."

Goold and Stern, assistant director of ITTP, are the first to recognize the contrast between students discussing end-of-life issues and actually working with patients and their families. Readings and lectures go only so far in conveying end-of-life emotions and dilemmas. But faculty often are reluctant to have students dive into real-life situations, sharing tentatively in what can be terribly private and painful moments for families. "I don't want a second- or third-year medical student to go in and say, 'I'm sorry, you have colon cancer,' " Stern says. "And having to tell a person that a family member has died is a huge challenge. I don't know that many physicians do it well. We don't have as much opportunity as they do on 'ER.' "

Between the textbook and the real-life situation, however, there is a third alternative, one that is gaining increasing popularity in medical classrooms nationwide: the standardized patient. Standardized patients, who are trained to act like real patients and who are paid for their services, provide medical students with the valuable opportunity to interact with real people in situations that feel very real even though they are not. Nancy Livermore is one such person who provides this valuable service in Michigan's Medical School.

To watch her in action is to marvel at her well-honed acting skills. As a medical student approaches her in the examination room, she appears frightened and on the verge of tears. Her eyes spill over when the student tells her that what she first believed was a bad case of hemorrhoids is rectal cancer. Her anus and rectum will have to be surgically removed, the student says, adding that a colostomy bag will become a permanent part of Livermore's life.

"Am I going to die?" she asks.

She has heard her diagnosis of rectal cancer numerous times. Always, she says, she asks the nervous medical student sitting before her if she's going to die. Livermore laughs a little when she recounts the answers she has received. "They all deal with it differently. The best response I've heard is, 'Not if I can help it,' " Livermore says.

From her perspective as patient "G. Johnson," a 66-year-old widow and grandmother, Livermore has an excellent vantage point of third-year students and how comfortable they are with difficult end-of-life discussions. While her diagnosis is not necessarily life threatening, it does involve cancer and disfiguring surgery.

Once they get the word 'cancer' out, everything relaxes," says Livermore, an Ann Arbor resident. "It's difficult to tell someone they have cancer." Livermore describes her work as "like method acting." Her acting skills in simulating the behavior of a cancer patient offer medical students valuable opportunities for facing such real-life challenges as delivering unwelcome news.

Such opportunities, Colletti feels, are essential if students, who vary greatly in their ability to relate to others, are to understand and master the difficult communication tasks all doctors face. "This is not a test of medical knowledge," she says. "This is a 'communication skills-only' experience. Some students are incredibly skilled. Others are incredibly awkward. The spectrum of performance on this is very broad."

Colletti started the "Breaking Bad News" program in mid-1998. It grew out of a two-year grant Goold secured from the Charles E. Culpeper Foundation to develop a bioethics training program for faculty. "We did it because nobody was teaching this," says Colletti, associate professor of gastrointestinal surgery.

The teaching covers such skills as making eye contact, responding to patient questions, dealing with tears and disbelief, and learning to listen. The listening skills are what Livermore pays special attention to in her role as patient. "They have a hard time doing that," she says. "They want to tell. How they handle it is how they show the empathy and compassion for the patient."

Barclay is more blunt: "I tell them, 'Just shut your mouth. It's OK to not talk all the time,' " he says.

When he first proposed that students should address pregnancy loss in the obstetrics and gynecology clerkship, he encountered resistance from colleagues, Barclay recalls. Teaching students about death, loss or bad diagnoses made some faculty uncomfortable, he says, because they were uneasy handling such situations themselves.

"I was told, 'No, you can't do that' about 58 different ways. What it means for a physician is failure," Barclay says. "Physicians don't like to fail. Nobody likes to fail."

But the difficulty of delivering bad news, Goold insists, is no argument for taking a laissez-faire approach to incorporating it into the curriculum either. "You wouldn't wing it treating people with antibiotics. Why would you wing it when discussing life support with a family?" she says.

Practice is the only good way for students to learn how to break bad news, adds Barclay, who has repeatedly had to tell women that their pregnancy ended in miscarriage. "Not necessarily the right way. Not necessarily the perfect way. Just ways."

John Deledda

For fourth-year student John Deledda, his experience this year as a member of a medical team caring for a dying man who was estranged from his family gave him an insider's view of what his teachers had been talking about.

The patient, fighting cancer that had led to brain damage and a blood infection, was extremely ill and being kept alive with life support. "It became apparent that the only reason this man was alive was because everything was being done to the extreme," Deledda says. "The family was not a close family. None of them wanted to take responsibility for determining this man's medical course or life."

Deledda, who aspires to be an emergency room physician, was now feeling the pull he will undoubtedly face again and again: wanting to do nothing to harm the patient, which in this case he felt the machines were doing, yet wanting to follow a family's wishes to keep the patient comfortable.

"It's impossible to teach you in a book the right or wrong answer to those issues," Deledda says. "Every day we thought he was going to die or the family would decide to withdraw care." Deledda saw the situation take its toll on both the doctors and the family.

Everyone grew tired. Finally, after four days, the family decided to turn off life support. "They said, 'It's time.' "

Through it all, Deledda listened and observed. He spoke if asked to speak. He had rotated through Barclay's pregnancy loss exercise and understood the steps of explaining bad news, but this was all much more difficult than he expected.

You're excited to deal with it," Deledda says of the emotional tug-of-war he watched play out. "You're excited to learn about it because those questions are in your head, and you're eager to watch the answers unfold." He admits he does not know if he's ready to handle such a case on his own. That will be the next frontier, as a resident in an emergency room making quick decisions about life and living. "You never know if you're ready," he says. "You find out after your first time." If his teacher Mel Barclay has his way, those first experiences for John Deledda will make for memories that don't haunt him years from now.

Also:

Speaking clearly, showing your emotions, saying "I don't know...

Integrating ethics into residency programs: Michigan helps lead the way

Experimental treatments and hospice care: a new "best of both worlds" opportunity for the terminally ill