Life quality vs the ‘quality of life’:: assumptions underlying prospective quality of life instruments in health care planning
Section snippets
An historical perspective
As a general clinical perspective, QL assumptions were introduced early in the 20th century by advocates of the eugenic movement in the United States. The general argument was that some persons were so disabled their deaths were socially preferable to their continuance. Eugenics could mean judging both who was “better-not-born,” and deciding who was “better-off-dead” (Pernick, 1996, 15). While most early public cases addressed the “feebleminded” and the severely disabled (infants with
QL constructs
The result has been an increasing reliance in health care planning, and medical decision making generally, on quantitative and prospective, health-related QL instruments (Frisch, 1994, Testa and Nackley, 1994). Their direct concern is not life quality of persons with chronic conditions but the use of one or another QL construct to advance health planning in a context of scarcity. To this end these instruments purport to measure potential life quality in the face of disability. These have in
Surrogate perceptions
“The external determination of a diminished or unacceptable life quality is often not shared by the person whose life is being judged” (Cella, 1992). Quality of life determinations by normal, healthy persons tend to reflect the prejudice, fear, or concerns of the observer, not those of the person whose lived existence is being judged. Thus, “It often happens that lives which observers consider of poor quality are lived quite satisfactorily by the one living that life” (Jonson, Siegler &
Narrative literature
In sharp contrast to the current literature on life quality and disease burden in health economics and health planning, an evolving qualitative literature evokes and at times celebrates the often richly textured life of persons with physically limiting conditions, and the lives of the companions who facilitate their physically limited lives. This body of work, part of the evolving “disability rights” literature, offers insights into the emotionally complex and often socially integrated texture
Accommodation
By equating life quality with physical normalcy, prospective QL instruments generally — and utilitarian-based instruments specifically — ignore the degree to which people successfully adapt to a life with physical restrictions. A generation ago, Sacks called the process of accommodation to chronically limiting conditions, “the least discussed, the least understood, the most mysterious of phenomena” (Sacks, 1982, p. 35). In recent years, this literature has advanced, however, and its
Social support
Not all persons of difference successfully adapt to physically limiting, chronic conditions. Some utilize a range of psychological and social coping mechanisms permitting a positive life quality within the context of physical limits. Others, of course, do not. For those who make the transition, however, mitigating the effects of even severe physical limits to fashion a self-perceived “healthy” life and rich life quality is a result of at least three factors. The first is the reality of a
Conclusion
This presents a rather provocative challenge for public health professionals. If QL instruments based on the medical model do not adequately acknowledge the socially useful, intellectually full and interpersonally rich lives reported by persons like Hawking, the assumptions underlying these instruments must be reassessed. To the degree that “disease burden” measures a clinical condition without reference to the social context in which it occurs, the resulting assessment will be necessarily
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