Sick To Death > Chapter 2 > Rethinking the Transition Model

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Rethinking the Transition Model

When Elisabeth Kübler-Ross sought to study "dying" people in the late 1960s, clinicians responded that her university hospital had no one known to be dying (Kübler-Ross 1969). To label some people as "dying" and tailor care for them in order to better serve them was a revolutionary idea to professionals and public alike. Indeed, that insight spurred the hospice movement. But, however comforting a split between "dying" and "not dying" is to those who feel themselves to be "not dying," the labels don't fit people very well. Chapter 1 showed that the boundary between being mortally ill and merely sick turns out to be hard to find or predict.

Policy makers and their public do not yet have language that adequately expresses the types of care individuals facing eventually fatal chronic illnesses need most. The language popularly associated with palliative care alludes to a turning away from conventional care (figure 4, top). If the model were correct that "dying" people are a discrete, easily distinguishable group, then patients would get "aggressive care" until that treatment became ineffective, when they would be "dying" and would turn to "palliative or hospice care," which included only symptomatic treatment.

But some patients need pain control early and disease-modifying treatments late. Thus, the lower diagram in figure 4 embodies a better concept, with the proportion of disease-modifying treatments (often wrongly called "curative"), declining and the proportion of palliative care increasing as a patient's condition worsens and the end of life comes closer. In addition, the improved model recognizes the family's need for support in bereavement.

Many in the health-care arena now talk about most end-of-life care as "palliative," or comfort, care, without really agreeing on a definition. The Last Acts Task Force defined palliative care as "the comprehensive management of the physical, psychological, social, spiritual and existential needs of patients" (Last Acts 1997), whereas the World Health Organization defined it more narrowly as "the active total care of patients whose disease is not responsive to curative treatment" (World Health Organization 1990). Last Acts' definition might reasonably apply to patients at all stages of their illness - from diagnosis to death, even while cure may still be likely. Indeed, it seems to encompass all care services. The Center to Advance Palliative Care (www.capc.org) uses the term generally for the bottom half of the lower diagram: palliative services that are contemporaneous with services to modify the course of the illness. Probably the definitions will converge in the next few years; in the meantime, those who use the term may well have to define it as they use it in order to avoid misunderstanding.

Figure 4. Appropriate care near the end of life. Source: Lynn and Adamson 2003.

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Figure 4. Appropriate care near the end of life. Source: Lynn and Adamson 2003.

The upper diagram's pervasive mental model of a transition from one kind of care to another works only if a patient really "turns a corner" for the worse and the usual medical treatment clearly becomes futile, making all care thereafter palliative. For many patients, it will never be appropriate to "give up" all aggressive treatments (Byock 2000). Even though they want to be as comfortable as possible, patients may choose to have certain procedures or treatments that extend life. They want some palliative care, but not exclusively palliative care (Selwyn and Forstein 2003).

For example, a person with emphysema may well want a trial of ventilator support for the next time his breathing gets seriously impaired; but that same person might want advance care planning, a strict limit on how long to try the ventilator, and the promise of sedation at the end when the ventilator is withdrawn as he directed. Or someone with a stroke might reasonably want aggressive treatment to reduce the chances of another stroke and vigorous rehabilitation to enhance self-care potential, while also wanting strong measures for the pain associated with contractures in the unused hand. In most medical situations, the goals of living comfortably, independently, and longer are not in conflict, and, quite reasonably, patients want them all.