2000: FEATURES (print version)
NICHOLAS A. CHRISTAKIS
University of Chicago physician explains how hard--and increasingly,
how necessary--it is for doctors to tell patients what the future may
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.
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
1999 The University of Chicago
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
number and percentage of patients with chronic disease--for
whom the diagnosis is already known and for whom therapy is often simply
the continuation of previously initiated interventions--are increasing.
In such cases, because curative therapy is limited and the course of
the disease is long, prognostication can become especially prominent.
The clinical encounter is focused on the anticipation, avoidance, and
mitigation of complications of the underlying disease itself or of the
treatment. Patients with long-standing diabetes, for example, do not
need to be told their diagnosis (which is known to them) or their therapy
(for example, insulin--also known to them). Rather, they and their physicians
are concerned with such questions as "Will my kidneys fail, and if so,
when?" "Will I become blind?" "How long will I be able to care for myself?"
"How long do I have to live?" Moreover, in chronic conditions, there
is more opportunity to revise previously rendered prognoses as, over
time, the physician learns more about the patient.
developments in health-care delivery and technology also support the
increasing importance of prognosis. A key factor is the increasingly
bureaucratic structure of American medical practice. More and more,
physicians are becoming salaried employees beholden to bureaucratic
management or are otherwise losing their economic independence and some
of their professional autonomy. External review of physicians' clinical
behavior often focuses on actions that are at least implicitly based
on their prognostic judgments. For example, administrative oversight
plays an increasing role in therapy management, as physicians are being
asked, in the context of cost-effectiveness, to predict outcomes among
a variety of (more or less) costly treatment options or to estimate
the length of the hospital stay necessary for an anticipated medical
outcome. Better prognostication, in the sense of a superior ability
to foresee the outcome of a patient's illness, can help to optimize
the choice of treatment and the timing of hospital admission, thus reducing
greater focus on prognosis also results from the increasing need to
compare the quality of health-care providers, along with a societal
interest in rationalizing health-care expenditures by directing resources
to those most likely to benefit. Accurate and reliable prognostic assessments
are central to identifying, developing, and implementing optimal health-care
delivery systems in that they help patients and payers determine which
systems lead to good or bad outcomes. In the same way, evaluating the
cost-effectiveness of different medical therapies relies on access to
accurate information about the probabilities of various outcomes, which
are, in essence, prognoses. Some interventions may be cost-effective
only in subpopulations where the patients are at particularly high or
low risk of mortality, and payers may target interventions--conditional,
again, on the patient's prognosis--to cases in which they feel the benefit
justifies the cost. In each case, the ability to develop and analyze
prognoses is essential to asking the right counterfactual questions
and getting the right policy answers.
factor lending salience to prognosis is the increasing frequency of
randomized, controlled clinical trials. The customary role of prognosis
in clinical trials has been to ensure that patients of similar illness
severity are compared, as groups of patients with an equivalent average
prognosis (e.g., for death) are formed by the randomization process.
However, rather than waiting for uncommon or temporally distant outcomes
to occur in long-term clinical trials, which can be difficult and expensive,
investigators are increasingly making use of "intermediate endpoints,"
that is, findings taken to be predictive of long-term outcomes.
A decrease in a lab test is taken to indicate a decreased risk of eventual
death, making shorter and less expensive trials possible. The booming
industry in clinical trials thus supports increasing interest in the
development and use of various prognostic staging systems and clinical
emergence of certain medical technologies also increases the relevance
of prognosis. Such technologies--although often directed at improving
diagnosis and therapy--also provide, directly or indirectly, more accurate
and earlier prognostic information and therefore foster the rendering
of prognoses. One example is obstetrical ultrasound, which may incidentally
reveal information about the internal anatomy of a baby that would not
otherwise be detected until well after the baby was born. Thus, parents
and physicians are made aware of conditions long before the child is
able to present with the illness. Such early findings, not yet corresponding
to any observed symptom, demand explanation: patients wish to know what
the findings will mean, what the future has in store. One pediatrician
gives a typical example:
many kids come to our clinic when they're two weeks old because their
kidneys were abnormal on Mom's prenatal ultrasound! In the old days
when someone was diagnosed with polycystic kidney disease in the neonatal
period, they died before they were one year old, but now there are
so many much milder cases that only come to our attention because
of an ultrasound that happens to have been done for other [obstetrical]
reasons. We have no idea what to tell the parents about what to expect.…
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
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 in importance.
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