The Common Sense Guide to Improving Palliative Care > 1.6 The Temporarily Immortal and the Dying: Who's Who?

Sick To Death book cover This extract from the online edition of The Common Sense Guide to Improving Palliative Care is used with permission.

The Temporarily Immortal and the Dying: Who's Who?

The boundary between those who are healthy (or merely chronically ill) and those who are dying is not obvious, yet we often link appropriate care to that transition between categories. It is well worth taking some time to consider what truth there is in that distinction. We talk about the living and the dying as if the difference were obvious, as obvious as the distinction between men and women. But deciding who is dying is more subjective than that; it is more like the distinctions between short and tall or thin and heavy. As long as we—patients, families, caregivers, clinicians—are pursuing a cure or even a return to better health, we count ourselves as being among the living, the "temporarily immortal." Once we accept that the situation will worsen and that treatment will be futile, then we join the dying. Most of us would prefer to be counted among the dying only for a short time at the end of life, not for years and years, as happens when we need palliative care for a long time.

However, life and death are not that simple. Many people with serious and eventually fatal illness continue to function in their usual social roles. Eventually, the combination of multiple illnesses and the frailty of advanced age lead to increasing disability and, after perhaps five years, eventual death. The usual course toward the end of life is a number of years of increasing disease, disability, and use of healthcare services; the situation, then, is no longer an either/or proposition. Most do not look as though they are dying, and they would not describe themselves that way, either. The rather misleading way we think about "the dying" frames much of our public policy and healthcare. The Medicare hospice benefit, for instance, requires that patients have a "life expectancy of six months or less if the disease takes its normal course" (42 CFR Part 418, p. 916). Many laws about living wills, forgoing life-sustaining treatment, and advance directives use the term "terminal illness." Often, these policies serve to exclude people with desperate needs but ambiguous prognoses, especially people who are stable but in very fragile condition.

When trying to label patients as appropriate for hospice or palliative care (or not), organizations need to begin by redefining their terms. Rather than focusing on those who are clearly "dying," we need to consider patients for whom increasing illness and disability will lead to death sometime in the next few years and to think about how to offer them the kinds of services that help patients live well, even while dying. We have come to use the "surprise" question, first tested by Franciscan Health Services in Washington State: ask clinicians, "Would you be surprised if this patient died in the next six months or so?" Those whose death would not be surprising need palliative care, or at least advance care planning, comfort care, and psychosocial support. However, defining the population in this way means that there is no clear time when the patient gets only treatment or only palliation. Some patients will need both ICU care and do-not-resuscitate (DNR) decisions; some will want to be on transplant lists and record an oral history for a family legacy. Some who are sick enough to die will die within days, but others may hang on for years.

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