A very different way to look at prognosis is as a process in communication, central to relationships among clinicians, families, and patients.9 Families and patients can be greatly helped by an accurate prognosis, but this is not the only relevant issue. Prognostication can be a test of the physician's power; the more accurate the prognosis, the more powerful the "wizard-physician." While patients and families want a powerful physician, they are often conflicted because usually part of them wants the physician to be wrong when it comes to predicting bad things like death. Perhaps if we are wrong as to when a patient will die, we might be wrong as to whether the patient really is dying. A desire for hope often conflicts with the desire for certainty in prognosis. The physician, as (perceived) keeper of prognostic wisdom, is often a target for the conflicting emotions that arise between the desire for hope and the quest for certainty. Skill is required for safe passage between these extremes.
It is easier to comment on what not to say about prognosis at the end of life than on what to say. An almost certain mistake is to tell someone that they will die in X (days, months, years). The odds that the person will actually expire on the appointed day are slim. If death comes earlier, perhaps it may be due to some mistake or oversight on the physician's part. If death comes later, then clearly the physician did not know what he or she was talking about. Either way, the relationship with the physician will be threatened by such inept communication. Equally poor are throw-away line such as "Only God knows." While perhaps true in a literal sense because the exact moment of death is unknowable, this is a cop-out with religious trimming.
The trick seems to be to communicate what is and is not known about a patient's prognosis in a manner that strengthens the relationship between physician and patient/family while meeting informational needs. Usually, it is best to give ranges of time for prognoses - hours to days, days to weeks, weeks to months, or months to years. You may need to explain that you are not trying to be vague, but that our ability to predict death is imperfect at best. Rather than set yourself up for a fall with a prediction that may go wrong, your relationship may actually be strengthened by empathizing with the desire for greater certainty. In revealing your humanity and imperfection, you will have found common ground with the patient and family in the face of the mystery of death. how you go about telling when someone is about to die by saying, for example, "It helps to know how similar patients with similar illnesses have done, and my prior experience is useful. But most important now, more important than any blood test, is following the trend for your loved one. How he/she progresses over time will help us the most in getting a better reading on when death will come. We'll keep in touch with you as we see how things are changing." Such a statement reflects the iterative process of prognosis and invites ongoing discussion, strengthening the relationship.You may need to educate them on exactly
Requests for prognosis may relate to very practical needs, such as whether to reschedule a meeting or a trip or a common desire by a loved one to be at the bedside when the person dies. It may be very helpful to inquire why someone is asking just then about prognosis rather than assuming you know the answer. This helps frame your response. What they may want, in fact, is a concrete recommendation as to whether the family should be called or a change in plans made. You might want to give more concrete advice on this while admitting uncertainty about the timing of death.
One of the best ways to deal with conflicting desires for certainty and hope in prognosis is to bring the inquirer into the discussion; do not just answer the question. You might ask how much time he or she feels the patient has. An empathetic inquiry can go a long way in dealing with the stress of uncertainty. For example, "It must be hard sitting by the bedside, day after day. How are you doing - are you taking care of yourself?" I have also found it useful sometimes to ask patients themselves how much time they feel they have when discussing prognosis. Some patients seem to express this communication as a "message" from their body. "My body is telling me that it is dying." Thus, I may ask, "What is your body telling you about how much time you have (or more ambiguously, how you are doing)?" Such a question, while admittedly confusing to some patients, can help get patients out of a more abstract conceptualization as to when they might like to die into the experience of dying. The question may also help patients pay attention to messages from their bodies they may be ignoring.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.