Doctors from around the country are gathering in Rochester this week for a course aimed at teaching them how to communicate more effectively with patients who are nearing the end of their lives, and to pass that knowledge on to other doctors in training.
Course organizers at the University of Rochester and Genesee Hospital have also received funding to implement a new curriculum so their own medical students will focus on these issues as part of their education. The new medical training will be among the first in the nation to devote significant time to end-of-life issues for medical students in each of the four years of their training.
"Most physicians feel unprepared to provide competent care to dying patients, or to participate in end-of-life decisions," says Timothy Quill, M.D., an internationally recognized expert in end-of-life care. "It's very difficult to talk about these issues, and so the result is that most physicians avoid talking about death-related issues with their patients. Then the patient's care and medical decisions become driven by technology, rather than thoughtful discussions with patient and family. Poor communication is holding us back from delivering quality care toward the end of life."
This week's course is aimed at 100 doctors from around the nation and Europe who teach medical students and residents. The five-day course on "Improving Communication at the End of Life" at the University of Rochester Medical Center began Sunday, June 4 and runs through Thursday, June 8. The course is being sponsored by the American Academy on Physician and Patient and several other organizations, including the University's Program for Biopsychosocial Studies, Strong Health, and ViaHealth.
"Most courses like this are geared to nurses and clergy, and it is most unusual to have a predominantly physician audience. It is widely recognized that physicians are the weak link in improving communication about the end of life," says Quill, who organized the course. Quill is professor of medicine and psychiatry at the University of Rochester Medical Center, head of the University's Program for Biopsychosocial Studies, and a physician at Genesee Hospital.
One highlight of the week is a presentation by Jane Poulson, M.D., a physician in Toronto who was diagnosed with breast cancer four years ago and is still ill with the disease. Poulson is an expert in the care of the terminally ill; she speaks and writes eloquently about the shock of going from physician to patient.
In an article two years ago in the Canadian Medical Association Journal, she wrote, "Before I was diagnosed with cancer I thought I knew a lot about sickness and health. In my practice as a general internist and palliative care physician I had prided myself on being a sensitive and empathetic physician, open to patients' concerns and always willing to take the time to listen... But I didn't know what it was like to have cancer. Quite apart from the surreal horrors of therapy, I was astonished to discover how little I had understood of what my own patients experienced."
The week will feature a series of lectures and workshops on topics like delivering bad news, the importance of saying goodbye for families, communication around pain management, non-verbal communication, how to deal with questions that doctors hate, and maintaining hope when cure is no longer possible. Some doctors will also speak about their personal experiences will illness and death, including Poulson and Quill, who recently lost a brother who died in a bicycling accident.
Doctors will test the skills they learn by visiting with dying patients in homes, hospices and hospitals throughout the Rochester area. And they'll also grapple in small groups with their own attitudes toward death and dying. "Physicians are really struggling inside. This can be a very painful and difficult subject for us," says Quill.
To help train doctors at the beginning of their careers, Quill has just received funding from the Nathan Cummings Foundation to implement a new curriculum at the University's School of Medicine & Dentistry. A grant of $130,000 will enable physicians to give medical students in-depth exposure to end-of-life issues related to several specific diseases like AIDS and cancer. Students will spend extensive time interviewing patients who are dying as well as their families, putting a human face on the issues they've learned about in the classroom. They'll also study and discuss a range of end-of-life concerns, including how to deal with requests to stop treatment, living wills, sedation for patients in pain or short of breath, and the physical changes that occur in patients who are dying. In many medical schools today, these issues are avoided completely, or compressed into a single lecture.
"This is an important piece of learning that is ordinarily omitted in the education of doctors," Quill says. "If doctors are not trained properly, then their patients may be deprived of effective pain management. Doctors may not recognize the importance to patients of saying goodbye to their families. We have to let patients know where they stand in this process."
The involvement and expertise of Quill and other physicians has put the University of Rochester at the forefront of physician-patient communication and with end-of-life issues. Quill has written Midwife Through The Dying Process, a book that deals largely with the interpersonal experiences between physicians and their patients who are dying. Until the day comes when patients can trust that most doctors are skilled and comfortable talking about dying, Quill encourages patients to choose their doctors carefully.
"One of the best actions a patient can take is to find a physician to whom the patient feels connected. Physicians are central decision makers when it comes to medical choices, and every patient needs a physician who will be their advocate. The patient and physician should make an agreement to keep each other informed about the patient's health and to always tell the truth, as compassionately as possible. That's the basis of good communication."