A
University of Chicago physician explains how hard--
and increasingly, how necessary--it is for doctors to tell patients
what the future may hold.
On
numerous occasions,
patients have asked me if they would be cured of their cancer,
if their pain would ever stop, if they would live until the end
of the week, or until their next Christmas, their next anniversary,
their next child's graduation from high school. These questions
pained me, and not just because they touched on the ineffable
sadness of deadly disease or the efforts the dying often make
to stay connected to the living. They pained me as well because
it was so difficult, yet at the same time so essential, to answer
them.
Trained
both as a physician and a sociologist,
Nicholas A. Christakis has a joint appointment in the departments
of medicine and sociology at the University of Chicago;
his clinical practice consists of caring for terminally
ill patients at home. This article is adapted from his new
book, Death Foretold: Prophecy and Prognosis in Medical
Care (University of Chicago Press, 1999).
©
1999 The University of Chicago
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Over
the course of my clinical training, I came to regard explicit,
precise, and compassionate responses to patients' requests for
prognosis to be a key part of my role as a physician. I came to
see the deliberate assessment of prognosis as absolutely obligatory,
even if patients did not happen to ask. Yet I found that I had
been poorly trained for this.
Textbooks
omitted prognosis, journals avoided it, and medical schools ignored
it. The whole profession seemed to overlook prognosis. And few
of my colleagues shared my conviction that this might be a problem.
They even seemed bemused by my interest in this "marginal" topic,
as if the proper and scientific role of medicine were only to
diagnose and treat disease, not to predict its outcome.
Was
prognosis really so unimportant? Were the obstacles to it really
insurmountable? When it came to prognostication, physicians appeared
to speak hesitantly, softly, and ambiguously--if at all. This
contrasted markedly with the confidence they exuded when making
a diagnosis or prescribing a therapy.
I
ultimately concluded that the muffled presence of prognosis had
a lot to do with the raging authority of death. Prognostication
and death are tightly interwoven. Although there certainly are
more routine, less serious incarnations of prognostication, if
one asks doctors to free-associate with the word prognosis,
they are apt to say "death." And when physicians are asked to
think about the role of prognosis in their practice, the question
they imagine--and dread--is "How long do I have to live?" Like
death, prognostication seems mysterious, final, powerful, and
dangerous.
On
more than one occasion, I have seen the avoidance of prognostication,
or needlessly incorrect prognoses, harm patients. A recent newspaper
article entitled "For Cancer Patients, Hope Can Add to Pain" poignantly
captured how such harm can come about. It quoted a patient's wife
as saying:
The
Thursday before my husband died, I thought he was dying. But
the doctor was talking about aggressive chemotherapy. I asked
if this was palliative, and he said that he still hoped for
a cure. I was with him at the time of his death [three days
later], but the room was filled with eight other people hanging
bags of blood and monitoring vital signs. It was about as horrifying
as anything that could have happened. I don't think the [doctors]
were trying to mislead us. They thought he might be the one
case that would have a positive outcome. [But if I had been
told the truth,] we could have spent days with the children,
together, not filled with painful regimens in the hospital.
The
failure to predict this patient's death--in the sense of not thinking
about the prognosis clearly, in the sense of not articulating
it, and in the sense of encouraging an unduly optimistic expectation--was
harmful. Such a failure can contribute to a therapeutic imperative
that prevents families from taking steps to prepare for death.
The physicians did not want to see that the therapy would not
result in the desired outcome. They did not want to predict that
the patient was about to die. And they did not want to take action,
such as limiting therapy, based on such a prediction. My feeling
is that the problem in this case, and countless other cases like
it, arises more from errors in prognosis than from errors in therapy.
In our rush not to abandon patients therapeutically at the end
of life, we abandon them prognostically.
And
yet, cogent and compassionate prognostication could decrease the
prevalence of bad deaths in our society. Such prognostication
is a sensitively delivered and well-calibrated best guess about
the patient's future. It requires physicians to be as versed in
the art and science of prognosis as they are in diagnosis and
therapy, to make strenuous efforts both to learn the state of
the art with respect to the prognostic problem presented by the
patient and to communicate that knowledge in a way that the patient
can comprehend, to the extent that the patient wants this. Moreover,
it requires physicians to adopt a broader view of the meaning
of hope and to realize that there is much patients can realistically
hope for even if death is imminent and unavoidable.
Such
prognostication includes physicians' willingness to spend time
talking with patients, assuring them that they will not be abandoned.
It entails, finally, the willingness of physicians to act on
predictions, despite the risk of error. Such behavior by physicians
would reflect the realization that temporizing or self-delusion
in prognosis can be as harmful to patients as an incorrect diagnosis
or a mistaken treatment. And such behavior would, ultimately,
reflect the very real moral aspects of prognostication.
These
are not easy things to do, of course, and there is good reason
that physicians avoid prognostication, beyond the fact that it
is technically difficult and emotionally frightening. Prognostication
can hurt patients, and not just when it is inaccurate. Some patients
do not wish to be provided with prognostic information. And I
am deeply empathetic to the complexity of prognostication. What
I am suggesting is an approach that balances the benefits of prognostication
against the benefits of avoiding it, an approach that realizes
that unfavorable predictions do not mean physicians have nothing
to do and patients nothing to hope for, an approach that recognizes
that acting on an uncertain prediction may be better than making
no prediction at all.
A
better understanding of how physicians prognosticate is justified
not only by the prospect of enhancing patient care, but also by
contemporary developments that are increasing the importance of
predictions.