Doctors work to intensify connection with dying patients

By TINA GRIEGO
Scripps Howard News Service

Somewhere in the blur of medical school, between the pages of Basic Pathology and Principles of Biochemistry, it occurs to Scott Stoll that he is forgetting to be human.

Somehow, each new revelation of anatomy, each scientific fact coats him like veneer.

Instead of the patient, he sees a disease that must be identified, cataloged, controlled. Instead of a whole person, he sees a defect in a receptor in a cell.

"Medical school has its own rules," says Stoll, a 30-year-old student at the University of Colorado Health Sciences Center in Denver. "You are rewarded for having the right answers, for efficiency, for getting the work done, not for spending time with a patient or being compassionate. Some of my classmates actually felt as though they were looked down on if they showed compassion."

What have most medical students learned about helping people who are dying or talking to patients about planning for death? Almost nothing.

But with a little prodding and a smidgen of initiative, the health profession has plunged into a self-examination of how it deals with death.

If the movement's leaders succeed, more Americans will die free of pain, surrounded by their families, at peace.

No one says it will be easy. Dr. Linda Emanuel was shocked into participation by a chilling experience in an intensive care unit.

Emanuel, vice president for ethics standards at the American Medical Association, recalls joining emergency room doctors and nurses who sprang to the rescue and celebrated when an unconscious dying woman was revived.

"Later, I went to intensive care only to discover the woman was there in a vegetative state," said Emanuel. "We thought it was cut and dry, where success equaled resuscitation. It wasn't. We didn't know if she wanted to be resuscitated. No one talked to the family. No one even thought of it. And that was the standard of care."

Ten years later, Emanuel is helping lead an ambitious program to retrain doctors in communicating with dying patients and their families.

The AMA developed a series of workshops on caring for dying patients. This fall and winter, 62 doctors will train to lead workshops covering such topics as managing pain, nausea, constipation and other symptoms as well as delivering the news of death. Emanuel envisions "a cascade" of doctors teaching doctors.

The program is part of a campaign by the Robert Wood Johnson Foundation, which has assembled 120 health and consumer groups to improve care for the dying. The foundation has funneled $4 million into education programs in the last year.

At the University of California-San Francisco School of Medicine, a team is trying to improve the content of medical textbooks. The National Board of Medical Examiners is reviewing its licensing exam to add more and better test questions on end-of-life care.

The American Medical Association, the American Board of Internal Medicine, the American Association of Clinical Oncology and numerous other professional organizations recently issued guidelines detailing what their members should know about caring for dying patients.

Several medical schools are reworking their curriculums. They're adding rounds at hospices, incorporating classic works of fiction and nonfiction into ethics courses, adding seminars on death and dying, and pairing students with the dying -- not to treat as patients but to understand as people.

At the University of Colorado Health Sciences Center, Richard Martinez teaches a course called The Nature of Illness.

"If we are going to be successful in turning around a generation of sensitive, compassionate physicians who are caring for people in the end of life, we have to give students an opportunity to reflect, to contemplate their own deaths," said Martinez.

Some medical school faculty members are beginning to see students who want to talk about death and patients' rights.

"We don't have to start from ground zero with these discussions like we used to a number of years ago," said Dr. Eugene V. Boisaubin, who teaches medical ethics at the University of Texas Medical Branch at Galveston.

"Students are more aware of what some of the issues are. The (ethical) questions they ask are more poignant. They are more sophisticated."

Still, the task ahead looms large, said Dr. Stephen McPhee, a physician at the University of California-San Francisco School of Medicine.

"We live in a culture that wants to ignore death. There is a lot of avoidance of the issue. It makes physicians uncomfortable. And that's not limited to medicine. It's part of a larger cultural phenomenon."

Change is budding on all fronts, said Victoria Weisfeld, senior communications officer for the Robert Wood Johnson Foundation, a New Jersey non-profit organization that supports research and innovation in health care.

"Years of efforts have gone on to improve end-of-life care, but they have only tackled one part of the problem. And it hasn't worked," she said.

"Only by getting three things working together -- trained people, a supportive environment and a receptive, even agitated, public demanding change -- is anything going to happen."

Stoll is doing his part. He enrolled in a university course on illness. He read the Book of Job, The Death of Ivan Ilyich and numerous essays about dying and suffering.

Twice a week, he put aside his white coat and stethoscope and got to know Rev. Jim Lewis, a chaplain at Denver's University Hospital. Stoll had coffee with him, tagged along to doctor's appointments and listened as Father Jim recounted how he almost died last year after sinus surgery.

At the end of his class, Stoll wrote about Father Jim's medical battle from Father Jim's point of view.

"I think I learned to approach patients with more humility, as two people finding common ground," Stoll said.

"You know, a lot of people are in medical school because they want to help people. Sometimes all it takes is a gentle reminder."

(Tina Griego is a reporter at The Rocky Mountain News in Denver.)