Sick To Death > Chapter 2 > Creating and Naming a Category

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.

Creating and Naming a Category

Tailoring services to match the needs of the last phase of life requires defining that phase in useful ways. Certain considerations shape the care system for all three trajectories:

This shift toward serious chronic disease as the way that Americans come to the end of life has not been sudden. So why has it taken so long to adapt our social models and services to fit the needs of patients who will be very sick for a long time? Three factors have contributed to our failure to change:

While people who are generally healthy might also benefit from all- inclusive care over time, comprehensiveness and continuity are lower priorities because healthy people are able to seek diagnosis and treatment using their own ability to follow through, make judgments, pursue opportunities, and marshal resources. In contrast, many patients and families who need help to live with a serious chronic condition are not nearly as capable of patching together workable care and treatment arrangements. People who are sick enough to die should not have to customize their own care system; the care system should make it almost automatic to get the services that enable people to live well through a period of serious disability before death. That goal is challenging but not out of reach. The complexity of these patients' goals, the uncertainty of their life span, and the difficulties they face in advocating for their own well-being mean that the community and its professionals should shape a care system that fits the needs of people going through this phase of life, rather than make these needs fit the current hospital-centered arrangement.

There is no simple label for this category yet. Some favor the term "serious and complex condition" (Institute of Medicine 1999a). I prefer (and often use) "eventually fatal chronic illness" (Myers and Lynn 2002). Either term certainly takes in far more than patients who have a "terminal illness" in the sense that their dying is predictable and close. Instead, the category includes those who have serious and progressive chronic conditions that will generally keep them in substantially compromised health for all of the rest of their lives.

Such tailored care for the last phase of life cannot address only "comfort care," nor can it be available only to people who have a prognosis of dying quickly. Virtually every person with chronic lung failure (for example, emphysema) would be well advised to make plans about whether or not to use ventilator support for the next exacerbation of symptoms, even though much time could pass before the issue arises (Lynn, Schuster, and Kabcenell 2000; Lynn and Goldstein 2003). Likewise, many of these patients would fare better if they had the wrap-around support services now routinely provided only in hospice, such as prescription drug coverage, spiritual counseling, continuity, bereavement support, symptom prevention and relief, home health aides, and family support (National Hospice and Palliative Care Organization and Center to Advance Palliative Care 2001).

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