parents ask for predictions.
They want to know when will the kid need dialysis, when will they
have to start thinking about transplant, when will this kidney
disease that we see on the ultrasound affect them, because right
now their kids are thriving, they're doing well. But at some point
they're going to need erythropoeitin shots and growth hormone
and vitamin D and all these different things that we see with
renal failure. We have no idea when that will be.
advent of genetic-testing technology provides an important new
arena for prognostication. Analysis of a person's genes may reveal
relevant medical outcomes years or decades in advance in what
are generally termed "presymptomatic carriers." In contrast to
other tests applied for diagnostic purposes, these tests have
specifically prognostic importance, which is made all the more
apparent by the fact that, in most cases, no specific interventions
are available to cure the condition so detected, or even to delay
its onset. A prototypic example is Huntington's disease, a fatal,
degenerative neurological disease that usually begins in the patient's
forties. Tests can now reveal with certainty, decades before any
symptoms are noted, whether asymptomatic individuals will or will
not develop the disease. Because no treatment is available for
the condition, this is an example of the phenomenon of the complementary
relationship between therapy and prognosis, in that the prognostic
significance of these tests eclipses their therapeutic utility.
other situations, genetic tests are used to develop prognostic
information that does have therapeutic implications. For example,
some women, on the basis of the prognostic information provided
by genetic tests to evaluate their risk for breast cancer, undergo
prophylactic mastectomy--even though this prognosis is not certain.
As more studies reveal genetic bases for diseases as diverse as
emphysema, diabetes, dementia, cognitive disability, and alcoholism,
the prognostic use of genetic tests will certainly rise. The use
of such tests is also likely to rise outside of medical arenas,
for example, in law.
increasingly technological, "postclinical" nature of medical practice
fosters the availability of information that is presymptomatic
in nature, and therefore inherently prognostic. "Presymptomatic"
illness is, indeed, the specifically prognostic analog of "asymptomatic"
illness. The notion of asymptomatic or "occult" or "silent" illness
is itself interesting in that it posits a phenomenological realm
of disease of which the patient has no subjective experience.
This realm requires the intercession of an expert, a physician,
to be comprehended. Typically, the expert must use technology
to approach this realm, as when the physician uses diagnostic
tests to adduce the presence of disease even when the patient
has no symptoms.
implications of the notion of presymptomatic disease, however,
extend even beyond those of asymptomatic disease. Rather than
indications of an already present disease, the expert is said
to have discovered indications of a disease that is not yet even
present. Some physicians have even begun to call individuals whose
genetic tests are positive for a worrisome gene "prepatients."
The notion of presymptomatic illness thus represents an even further
distancing of the patients' subjective experience of disease from
the everyday practice of medicine. Moreover, the term presymptomatic
suggests an inexorable outcome: the patient will eventually develop
application of new technologies to patient care increases the
importance of prognostication in one other way: it creates a whole
new class of things about which to prognosticate, namely the complications
of the technology. Beneficial new technologies in medicine-from
computed tomography to chemotherapy to open heart surgery-have
not come without risk. Predicting their consequences is important,
and doctors are frequently called upon to explain to patients
a potentially confusing array of possible outcomes.
addition to changes in types of medical problems people face and
in the ways physicians confront them, there have been changes
in how patients and physicians think about the ethical duties
of physicians to their patients. Prognosis is a fundamental, though
implicit, basis for many theoretical and practical ethical decisions
in medical care, and prognostic uncertainty may complicate such
decisions considerably. Ethical decision making is increasingly
finding its way to the bedside. The elaborate informed consent
process that patients undergo before having procedures or participating
in research, for example, is predicated upon predicting
risks and benefits. Prognosis also profoundly affects decisions
to initiate, withhold, or terminate life support for critically
ill newborns and adults, and it figures in the discussions about
these decisions that doctors have with patients' families. Prognostication
is critical when one must allocate scarce medical resources to
those patients for whom they can do the most good.
it is central to the notion of "futility," a concept usually invoked
in situations where death is predicted to be imminent and inevitable.
The relatively recent emergence of futility as a theme in bioethics
reflects the moral desirability of acknowledging medical limitations
and the practical necessity of allocating scarce resources. Futility
is based on a prognosis not only that the patient is unlikely
to recover spontaneously, but also that any intervention will
likely be ineffective. As the avoidance of futile treatment has
assumed increasing prominence, for reasons of justice, beneficence,
or economy, prognostication--which is, after all the fundamental
and essential basis for a determination of futility--has increased
changes in American society are influencing the doctor-patient
relationship and fostering an increased interest in prognosis.
In areas from childbearing to terminal care, patients want information
about expected outcomes that they can use to manage their care
actively. This is especially true with respect to care at the
end of life. Now, physicians have the duty to inform their patients
about their illness, and patients have a right to know.
recent years, the American public has become more focused on planning
for death, a development reflected in the increasing interest
in everything from living wills to physician-assisted suicide.
There has been a profusion of books on caring for the terminally
ill at home, which include vivid, nontechnical descriptions of
what to expect and which document the impact of death on family
members. There have been best-selling how-to books on "self-deliverance."
And there have been books describing the process of dying, often
using detailed and intimate case histories. These latter books
typically reflect an attempt to help people find meaning in dying,
and they suggest that death is increasingly viewed as a passage
that can be actively anticipated and therefore managed. To enact
these popular visions of death, however, patients must rely on
reasonably accurate prognoses from professional physicians.
changes in the nature of illness in contemporary American society,
as well as in the way medical problems are being confronted, have
substantially increased the relevance of prognostication in clinical
care. As these trends converge, the nation's physicians will increasingly
be expected to prognosticate--they may be reluctant prophets,
but they will be prophets nonetheless.