The Right Time to

Simpson (1976) described the "how dare you die on me" syndrome, in which the patient has the "effrontery" to die before medical and nursing staff have used all the treatments in their repertoire. The patient is supposed to die "at the right time"—neither before all potential effective therapies have been tried nor too long after all palliative procedures have been utilized. Health professionals often need to feel that everything possible was done for the patient before death. These attitudes have developed because the health care process too often focuses more on professional expectations than patient needs.

We might consider what we have done to the patient who dies in the isolation of a laminar flow room, without having been able to touch another person's hand during his last few weeks of life. Such treatment is a false-positive, a treatment inappropriate to the real needs of the patient (Saunders, 1976).

However, it is impossible for physicians to provide adequate support during this difficult time unless they have come to grips with their own mortality. Studies by the Group for the Advancement of Psychiatry have revealed that physicians are afraid of death in greater proportion than patient controls (Aring, 1971). What better defense against death than to make one's full-time vocation fighting it?

Patients are often more willing to accept death than the physicians who treat them, and many fear that they will receive more aggressive treatment than they want. Based on interviews with seriously ill patients, 60% preferred that treatment focus on comfort, even if it meant shortening their lives. The other 40% wanted life-extending care. Of those preferring comfort care, only 41% reported that treatment matched their wishes (Teno et al., 2002). In another study, more than half of physicians interviewed admitted they had provided overly aggressive care to patients (Solomon et al., 1993).

Many if not most patients will choose toxic chemotherapy, even if there is only a slight chance of cure, or even if it would prolong their life by only a few months. The concern is that they may choose this route on the advice of their physician, even though they will be miserable for those remaining months. It is important to have a straightforward discussion with the patient about the quality and quantity of life with and without chemotherapy. More than 20% of Medicare patients with metastatic cancer had a new chemotherapy treatment regimen started in the 2 weeks before death (Earle et al., 2004).

Unfortunately, chemotherapy is better compensated than are discussions as to its need and potential side effects. It is no surprise that oncologists prefer third- or fourth-line chemotherapy to discussing hospice care. One patient received intrathecal chemotherapy 6 days before his death at a cost of $3400 (Harrington and Smith, 2008).

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