from
A Good Enough Death
in
Life Support: Three Nurses on the Front Lines
by Suzanne Gordon
Little, Brown

The ability to use what nursing scholar Patricia Benner has called skilled intuition is no more critical than when helping terminally ill patients navigate the last days of life. In late summer, Nancy is caring for Herb Clark. He is an internist who admits to another teaching hospital. However, when he was diagnosed with cancer in his mid-fifties, he did not seek treatment there. His hospital, he confides to me, was a factory. Rather than endure the kind of impersoanl care he would get there, he chose an oncologist at the Beth Israel and became a patient of Nancy's.

As we talk, Herb leans against the high countertop around the island of desks, computers, and phones in the middle of the treatment area. Although a patient himself now, with an Irish wool cap covering hair thinned by chemotherapy, he still looks the part of the impeccably dressed medical academic, with his natty tweed jacket, sky blue Oxford button-down shirt, and teal blue tie. In deference to the patients and staff around us, Herb speaks quietly -- but with intensity -- about his experience at the BI. Dealing with his own illness has clearly given him new insight into the healer's art and the importance of having good hospital care, rather than the assembly-line variety.

In some institutions, he says ruefully, the whole system is so mechanized that patients feel as though they have been put on a conveyer belt. If the chief of service just wants to move people along, they don't get much caring, he explained. Doctors and doctors-in-training get points for writing papers, not for talking with patients. Here at the BI, he notes, staff members spend more time and energy building the more human relationships with patients that the latter need and want.

Which is why, as Herb's cancer spreads and there is less medically to do for him, Nancy's efforts to be there for him do not diminish but intensify.

The role that Nancy plays in the period prior to his death reflects the orientation of nursing. While many physicians do assist people when they are forced to come to grips with their own mortality, the medical model of diagnosis, treatment, and cure makes it difficult for doctors to cope with the dying and death of their own patients. The physician often experiences the loss of a patient as a personal failure, a defeat in the daily battle against disease. This may be as painful as the loss of any further human connection with the deceased. Avoiding dying patients, after efforts at active medical intervention have ceased, becomes a way of avoiding a continual affront to doctors' professional self-esteem.

Doctors are sadly given little guidance about dealing with the complex feelings that suffering and dying provoke. Expressing and dealing with feelings is typical of a culture of nursing that stands in direct contrast to a culture of medicine, in which feelings tend to be avoided, unexplored, and suppressed. Their practice has developed from a "male" model that values doing, not being, acting, not talking about feelings. Forty-four-year-old oncologist Glenn Bubley remembers his training and the socialization process that flows from this model. "When I was in medical school, exploring feelings was actually looked down on," Bubley says. "People used to make jokes like, 'Have you touched base with your feelings today?' There was a value judgment placed on how you responded to your work. If something went wrong, most people felt you were stronger if you sublimated your feelings and worked harder, and that you were weaker if you explored those feelings."

Nothing in the formal medical school curriculum or in his residency or fellowship programs taught him how to deal with his feelings about his difficult work.

A generation later, younger physicians and fellows are not given much more help in dealing with the dying. According to a 1992-93 survery conducted by the AMA, of the nation's 126 medical schools, only five have a required course on the care of the dying. One hundred and seventeen of the schools said that the care of the dying is included in other required courses or in elective courses. The Cecil Textbook of Medicine, a volume used by most medical students, devotes only three of its 2,300 pages to the care of the terminally ill. Or as another classic, Harrison's Principles of Internal Medicine, put it, "The discovery and cure of potentially serious disease represents a far greater service to one's patients than ministrations in the course of an incurable condition."

Harvard Medical School offers an elective course for medical students called Living with Life-Threatening Illness. It is run by physicians J. Andrew Billings, Susan Block, and Lynn Peterson and is much appreciated by those students who take it. But only a handful of the three hundred or so students do so each year. For those students who have benefited from such tutorials, there is little systematic follow-up effort to help them develop emotional skills during their apprenticeship. But novice physicians need to do more than remember what they learned years ago in a medical school class. They need to work out their feelinds when they are dealing with the individual patients who are suffering and dying.

At the Beth Israel, in the physicians' conference room just outside the doors of the Hematology/Oncology Clinic, attendings hold discussions with fellows, residents, interns, and medical students. With only a few exceptions, Bubley explains, the conversations focus on topics like "What was the patient's hematocrit? What was the platelet count? Should we give her this drug or that drug? Sometimes, some attendings will talk about whether we should pull the plug. How agressive should we be? But only rarely does anyone ask, 'How are you feeling about this?' There are certainly no formalized discussions about what it's like to take care of people who are so sick and who so often end up dying."

This reflects the priorities of the cancer research and treatment community. In 1995, the National Cancer Institute devoted only $26 million of its total $2.1 billion budget to research on issues of concern to the dying, such as controlling pain and palliative and hospice care.

A medical culture based on a relentless war against disease tends to influence everyone within it -- biomedical researchers and physicians -- regardless of gender. Thus, some of the female attendings in oncology are no less averse to talking about feelings, holding meetings with patients' families, and dealing with the dying than their male colleagues are. This means that the fellows they train may also get little or no education in "the skill of involvement."

Paola Rode, a second-year fellow who works with Nancy in the clinic, talked to me one afternoon about her frustration with the medical world's lack of emotional guidance. "Going through the course of the patient's disease is more intense than I or, I think, any of the fellows would have ever predicted. It's really tough at times. You have a lot of patients who are very ill. About halfway through the year, you start to see people who are really sick and some start dying or failing their therapies. It's a really tough time.

"You start wondering, 'What am I doing?'" said Rode.


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© Copyright Suzanne Gordon, 1997. All Rights Reserved. No portion of this work may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system now or hereafter invented, without permission in writing from the Publisher.