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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