lawyers, kin, and clergy have their say at BC conference
Of the 67 ethicists,
clergy, and health care professionals at Boston College's conference
on ethics and the end of life, which took place March 17-18, women
accounted for 54, or 80 percent, a fact that brought up some delicate
questions. Were male clergy and clinicians, who presumably deal
with dying people as often as their female counterparts do, less
likely to ponder the ethics of their work? Or, on a pop-psychology
level, were women more inclined toward nurturance and men more likely
to lapse into denial in the face of death? Or was the discrepancy
a mere aberration, an extreme outlier on the bell curve? Asked about
all this, conference cochair Rachel Pruchno, director of the University's
Initiatives on Aging program, said, "Women tend to be in the
disciplines of nursing and social work, and these disciplines tend
to be more concerned with end-of-life issues," but she also
admitted that, for whatever reason, "women may be more inclined
to talk about" death and dying.
However you explained the gender imbalance, it affected the tone
of the proceedings, which had a collaborative, harmonious, welcoming
feel sometimes lacking at big-time academic meetings. On the literal
eve of Gulf War II, male and female speakers alike praised the softer
virtues, stating their preference for open emotionality over the
stiff upper lip, and for ethics over law as a means to solve end-of-life
disputes. Speakers of both genders also called for greater emphasis
on "caring" over "curing" with respect to dying
patients—that is, for palliative hospice care over heroic, technological
Though the conference addressed the end of life from a wide range
of perspectives—legal, clinical, social, economic—the caring vs.
curing controversy managed to find its way into most presentations.
Laurel Herbst, a San Diego physician and hospice administrator,
started off her presentation with a joke that the reason coffins
are nailed shut is "to keep the oncologists from having one
more go." Fr. Richard John Neuhaus, a New York City-based author
and editor, began the public lecture he gave in conjunction with
the conference with the dry observation that, even in the face of
vast medical progress, "the mortality rate holds steady at
100 percent." Both Neuhaus and medical ethicist Daniel Callahan
of the Hastings Center, a research institute in Westchester County,
New York, implied in their remarks that contemporary medicine suffers
from a horrible case of hubris. Neuhaus asserted that biotechnology
aims at nothing short of immortality for the human species, a prospect
he finds "chilling," while Callahan quoted a physician
as saying, "Death is nothing but a series of preventable diseases."
The problem with that view, said Callahan, is that it blinds the
profession to the moment when one last desperate treatment may only
waste resources and cause needless suffering for a dying patient.
Professor John Paris, SJ, of BC's theology department, underscored
this last point darkly, with the story of his dying sister, whose
doctor proposed a last-ditch treatment, saying 5 percent of those
who received it had survived one year. Paris said his sister replied,
"Tell me about the other 95 percent."
Callahan struck a similar note in an anecdote he offered. A friend
of his, a medical ethicist who was dying of pancreatic cancer, agreed
against his own better judgment to a last round of chemotherapy
that, according to Callahan, "made his dying worse." Callahan
asked him, "Why did you do it?" "I don't really know,"
the friend replied. "They talked me into it."
No speaker at the conference disputed the view that doctors sometimes
go too far, but some complained that the caring-curing language
presented too rigid a dichotomy. Ethicist David Solomon of the University
of Notre Dame's Center for Ethics and Culture maintained that "for
most older people, the clearest indication that they're being cared
for is that someone's trying to cure them"; Laurel Herbst outlined
a model of curing-and-caring in which both are always part of the
treatment plan but caring—including pain relief and interventions
by chaplains and social workers—becomes more and more important
as curing starts to fail. In Herbst's model, caring lasts even beyond
the patient's life, in the form of "family bereavement care."
As physician Terri Fried, a specialist in geriatric medicine at
Yale University's medical school, put it, "The palliative and
curative models represent only the extremes of a very long continuum."
The other dichotomy that got aired at length involved law vs. ethics.
Nancy Dubler, a lawyer who heads the bioethics division at New York
City's Montefiore Medical Center, spoke on the limitations of the
law when it comes to providing guidance about end-of-life treatment.
Highly touted legal instruments such as advance directives and living
wills end up having small effect on the system, Dubler said, because
most patients haven't prepared such documents. What is more, the
few patients who have planned ahead often end up getting
overridden by their relatives once they lapse into legal incompetency,
at which point the families demand heroic medical efforts that are
not only useless but expensive to the patient and to society. In
the resulting disputes between hospital and kin, the family almost
always wins because, as Dubler pointed out, "dying patients
don't sue; family members do." Dubler went on to cite another
legal bind: the restrictive drug laws that make pain relief difficult
to get, with the result that, while 95 percent of pain can be managed,
50 percent of patients die in moderate or severe pain. Thus, she
said, the burden of humane end-of-life care falls on doctors, and
the doctors' sense of ethics. "I would like to see physicians
say, 'You may get a few more days [of life from a treatment], but
the cost to you will be horrendous. Let us keep you comfortable,'"
said Dubler. "Courts and lawyers should be largely irrelevant
in these decisions, and medicine should have the guts to say they
are ethical decisions . . . . The ethicist's voice,
the physician's voice, the nursing voice must be much stronger in
In response to this, nurse/chaplain Emily Chandler of Massachusetts
General Hospital wondered aloud whether we would really like what
we heard if the physician's voice were stronger. She said, "I
can't tell you how many times a doctor comes [to a dying patient]
and says, 'There's no more we can do for you' and then 'We're going
to turn you over to the social worker.'"
"Yes, physicians are particularly bad about abandonment,"
echoed physician Laurel Herbst. "They need to be taught pain
management, which is the next step in care."
Cardiologist Douglas Miller from St. Louis University's medical
school mentioned, as another possible corrective, his experiences
running discussion groups in which residents, medical students,
and doctors explore "their own spiritual and emotional lives
in connection with the culture and demands of medicine." For
dying patients, Miller said, the presence of such groups in a hospital
results in "more spiritual discussions with their doctors"
and "less depression, less death distress." The bottom
line, he said, is that "doctors should never say there's no
hope. There's hope that at least you can die well."
Reich is a Boston-based writer.
Photo by Gary Wayne Gilbert