Amy Jordan, a first-year student at Harvard Medical School, hadnt completely resolved the feelings of loss she felt about the death of her mother following a long struggle with cancer. So when she heard about an elective course at the School, called Living with Life-Threatening Illness, she eagerly signed up.
The course pairs each student with a dying patient for a 13-week term. Jordan (not her real name) was paired with a very sick man in a hospice. She felt extremely anxious about her first contact with him. “What will I have to offer this person?” she wondered.
The visit went badly. The man was so ill he could barely interact with her. Jordan left feeling discouraged.
Things went no better the second time. At the end of the visit, she said to him: “I dont want to impose on you; I know you are very sick. Do you want me to keep coming?”
The answer surprised her. “Youre the only thing that makes me feel like its worthwhile staying alive,” the man told her.
“He was pleased that a young medical student, with so many other commitments, would spend valuable time with him,” notes Susan Block, an associate professor of psychiatry at Harvard who runs the course with her husband, J. Andrew Billings of Massachusetts General Hospital in Boston.
In such pairings, the student and the patient both offer something to each other. “The student may not have much medical knowledge, but her or his human presence has therapeutic value,” Block points out. “Some patients see it as helping students to learn; that is, making something positive out of a difficult, negative experience. Some think of the course as an opportunity to leave something of themselves behind as a legacy for future generations. We were amazed to find so many people very near death who were willing, even eager, to participate.”
The course offers “opportunities to think about and discuss some of the most dif ficult issues that patients and others must face death, pain, faith, comfort, and commitment,” notes Laura Michaelis, a senior who took the course during her first year. “I got to know an incredible person in a very intimate way. She opened herself up to me to discuss exceedingly painful episodes and events in her life. I had the chance to talk about what this relationship meant to me with other classmates and experienced doctors, which meant I also learned a lot about myself.”
Filling a Void
The course originated from wrenching situations experienced by two medical students. Anne Hallward had worked as a hospital chaplain before coming to Harvard Medical School. Part of her job involved accompanying physicians, usually interns, when they gave families the news of the sudden death of loved ones. The doctors, Hallward recalls, felt enormous anxiety, sometimes clutching her arm and asking her what to say. The result was that they often gave information about an unexpected death in cold, hurried words loaded with medical jargon.
As a third-year medical student who was part of a surgical team, Joshua Hauser found that the surgeons were poorly prepared for handling the fear, pain, and sadness felt by patients nearing the end of their lives. In exploring the situation further, he got a lot of insight from conversations with a woman suffering from metastatic breast cancer. The woman had once asked doctors at a medical conference why they were not taught more about how to communicate with people about death and dying.
In 1994, Hallward and Hauser approached the Medical School about initiating a course on end-of-life patient care. “Their request felt like a gift, as we had been thinking about starting such a course ourselves,” comments Block, who works with cancer patients at Dana-Faber Cancer Institute in Boston.
Eighteen students registered for the first course, given in 1995. This year, the number has risen to 49. As is true for me dical students in general, many of these students have had significant personal losses. “Virtually all were struggling to explore and understand their own concerns and fears about death in the hope that this would make them better doctors,” Block comments.
In addition to classes that all students attend together, smaller groups of six to seven students meet, along with two faculty members, for more intimate discussions. “Students use these discussions to explore their personal experiences, and this activity is essential for enabling them to relate well to their patients,” Block says.
One student wrote to her patient: “Prior to the class, I never was sure about how to talk to anybody about death. You have given me invaluable gifts of insight. Now when Im caring for my own patients, especially those who are near the ends of their lives, you will always be there.”
Children and Goodbyes
Not all patients in the course are old people dying in hospitals. Students see children, as well as the elderly during outpatient visits, and they make house calls when the people are homebound.
“On the wards, it can be difficult to find time to sit down with patients and learn directly from them about their experiences,” notes Christina Vestergaard, a fourth-year student. “During the course, I had time to meet with my patient an hour at a time over a period of five months, allowing us to develop a great degree of rapport. I also met with her in her home, where I began to see her, not as a patient with a terminal illness, but as an individual who had a home, husband, and family. Such opportunities are rare in medical training.”
Since last year, children have been included in the course. “This was an important growth point for us,” Block admits. “Sick children die, and many students wanted to learn how to deal with them at this time.”
Whatever the setting, faculty and students always struggle with the issue of appropriate boundaries. In what ways is their connection with dying patients like a friendship and in what ways is it like a doctor-patient relationship? “We teach students to remain committed to patients just as they would as doctors, and, at the same time, to bear with their intense and often painful feelings as they would as supportive lay persons,” Block answers. “Its easy to distance yourself in order to survive in this work but, no matter how difficult the experiences, you must stay connected to do that work well.”
Part of this problem is whether to continue the relationship when the course ends. After much deliberation, the faulty decided that students should break contact at this point. “We think its important for them to stop and review their relationship, to reflect on what the experience has meant to both of them, to say thank you and goodbye,” Block notes. “Its a time when the relationship comes to fruition, a time to say things that otherwise might not get said.”
The goodbye rule, however, is not an inflexible one. “When its appropriate, we allow students to continue contact under supervision of a faculty member who has experience with these situations,” Block explains. “They are first-year medical students in emotionally intense relationships, and guidance is necessary to prevent problems on both sides.”
If a patient dies during the relationship, students are encouraged to attend the wake and funeral, and to share the familys grieving process. “Learning to grieve is also part of being a doctor,” Block says.
Jennifer Furin, who graduated from the Medical School last year, described what happed when she went to the funeral of her patient, a woman named Vicky: “I wrote a letter to Vicky at the end of the course to thank her for being my teacher. She gave copies to her family, and her son read the letter at the funeral. Many times we felt like we were bu rdens on our patients. It is, after all, a course for us. I did not realize how much it meant for Vicky and her family to be doing the course. I was lucky enough to find out.”
Furin also learned how important it is to do little things for people. “The thank-you note seemed like a very small thing,” she said. “I almost didnt do it. In the end, though, it made a huge difference to her, to her family, and to me. I needed that reminder; I think we all do.”
At the end of the course, students and faculty gather to remember patients who have died and to celebrate the spiritual gifts they have received. They reflect, share stories, play music, sing songs, and read poetry. “Its a poignant time,” Block comments, “theres lots of tears.”
Of lessons learned, one student remarked: “Its comforting to know that by listening we may be able to alleviate a dying patients psychological pain just as we alleviate physical pain through use of drugs. It reinforces the notion that the role of the physician is not just to heal, but to improve the quality of life of their patients, for as long as that life exists.”
Looking back on her experience, Christina Vestergaaard recalls receiving a letter “from my patients husband telling me his wife had just died. He wrote that his wife had valued our relationship very much and hoped that my memory of her would help me be a better doctor. Reading that letter was, at the same time, the most difficult and the most satisfying part of the course.”
Students Evaluate the Course on Death and Dying
At the completion of Living with Life-Threatening Illness, Harvard Medical School students are asked to answer a series of questions about their experiences. Below is a sample of questions and a variety of answers:
What important lessons have you learned from your patient?
Compassion, fragility of life, humor.
To live while dying.
Death is a part of life, not the end of it.
What are the important lessons you learned about yourself?
I need to keep trying to accept mortality as a fact, and not be so scared of it.
I fear death.
That I can see a terminally ill person as a person.
Dealing with terminally ill patients is not depressing.
How did the course influence your feelings about death and dying?
It helped me realize that dying patients are still alive and coping with everyday life.
The process of dying now seems as important as death itself.
I am less afraid about death and dying, and I hope to help others be less afraid.
I realized that the death of someone close to you doesnt mean that your life has to end as well.
I saw patients approach death and dying with courage and dignity. It gives me hope that I might one day be able to do the same.