Morbidity indicators

But its rejection leaves a difficult question: if health is something less
that complete physical, mental, and social well-being, how is its scope
to be limited? Health professionals, researchers, and policy makers have
acknowledged the need for such limits, and have introduced the notion
of health-related quality of life (HRQL) as a way to set them. HRQL assessment
tools evolved from older mortality and morbidity indicators,
augmented by measures of functional status, subjective health experience,
and perceived components of “social health.” These instruments
were designed to assess the patient’s performance in, or satisfaction
with, areas of activity affected by her physical and mental functioning.
Since virtually all areas of activity are affected by health, however, these
measures had to limit themselves to the areas most directly or substantially
affected by health. Yet without an understanding of what counts
as “health-related” in this sense, that term does more to label than to
resolve the issue. The proliferation of HRQL instruments has not been
informed by a careful analysis of, or an explicit agreement on, that issue.

Low expected quality of life

The notion of quality of life, given currency by other developments in
health care, offered a convenient “child-centered” rationale for prenatal
testing and selective abortion: couples should be concerned not only
about whether to have children, or indeed about whether it is moral to
do so (e.g., Brock, 1995; Purdy, 1996), but also about the quality of life
that a particular child could be expected to have. If the chromosomal or
genetic constitution of a fetus appeared to preclude a life of reasonable
quality, it was appropriate to abort. Until recently, selective abortion
escaped the controversy that has accompanied efforts to limit the medical
care given to severely impaired neonates (e.g., Kuhse and Singer,
1985) – a limitation also justified by low expected quality of life – in part
because newborns are generally accorded higher legal and moral status
than fetuses. Despite the continuing controversy over abortion in general,
abortion for disease and impairment was seen, even by many who
were troubled or ambivalent about abortion in general, as a responsible
exercise of reproductive choice (see Asch, 1999).

Midterm abortion

A concern about quality of life also came to play a central role in
reproductive decision making during the same period. In 1973, the U.S.
Supreme Court recognized early and midterm abortion as a constitutional
right. After Roe v. Wade, a woman could have a legal abortion
through the second trimester anywhere in the United States, for any reason.
Genetic and other reproductive technologies were soon providing
a stock of reasons for aborting that women had never previously
had, through the use of tests that could reveal a variety of diseases,
susceptibilities, and impairments. Because public acceptance of
such tests depended on their being seen as noncoercive, they could
not be presented as public health measures intended to eliminate

Benefits of New Medications

Patients are not the only group to have become more concerned about
the quality of life that results from medical interventions. The interest of
health researchers, policy makers, and administrators predates the public’s
by at least a decade. Beginning in the 1960s, a variety of medications
were developed to increase patients’ functioning or to lessen their pain,
discomfort, depression, or anxiety without curing their diseases or increasing
their prospects for survival. In order to assess the benefits of
these new medications, the pharmaceutical industry financed the design
and use of some of the earliest quantitative measures of quality of
life. That industry continues to play a major role in developing and utilizing
increasingly sophisticated quality-of-life measures (Walker, 1993;
Spilker, 1996). In the past thirty years, quality-of-life measurement has
been eagerly taken up by researchers, epidemiologists, public and private
health administrators, health economists, and health policy makers.1
Together with estimates of survival and tests of physiological function,
these measures have now become a standard part of the calculus employed
to compare the “cost-effectiveness” of treatments for the same
and different health conditions, a calculus that is used to justify tradeoffs
among limited medical resource

Some cognitive functioning

The controversy over end-of-life treatment thus continues, now focused
on the morality and legality of physician-assisted suicide and of
decision making for those who appear unable to decide for themselves.
In the former case, the salient issue is typically the right of competent
individuals to enlist physicians’ assistance in committing suicide; in the
latter, the difficulties of ascertaining the prior or hypothetical wishes of
the patient and their relevance to the present decision. In both areas, the
notion of quality of life is firmly entrenched as an important, if often
suspect, consideration. On the one hand, interventions that are technically
feasible, but produce no discernible improvement in quality of
life, are often opposed as pointless and undignified. On the other hand,
the opposition to withdrawing life support from individuals who retain
some cognitive functioning, or the possibility of recovering it, often
emphasizes the quality of life still possible for those individuals.
Patients are not the only group to have become more concerned about

Reproductive practice

In this Introduction, i will briefly review how quality of life came
to assume such importance in health care and reproductive practice
and policy. We will then discuss some of the conceptual and ethical issues
raised by attempts to measure health-related quality of life and
to use such measures in the evaluation of health care interventions.
Next, we will examine the bearing of these issues on the current rethinking
of disability, a category that has been widely associated with
poor quality of life. We will describe the tension that has arisen between
the emerging understanding of disability as an interaction between
health and nonhealth conditions and environmental factors, and
the effort to systematically measure health-related quality of life. Finally,
wewill preview the discussions of these issues by the contributors to this
volume.

Genetic technology

Genetic technology has enabled us to test fetuses for an increasing number
of diseases and impairments. On the basis of this genetic information,
prospective parents can predict – and prevent – the birth of children
likely to have those conditions. In developed countries, prenatal genetic
testing has now become a routine part of medical care during pregnancy.
Underlying and driving the spread of this testing are controversial assumptions
about health, impairment, and quality of life. While the early
development of prenatal testing and selective abortion may have been
informed by the questionable view that they were just another form
of disease and disability prevention, these practices are now justified
largely in other terms: prospective parents should be permitted to make
reproductive decisions based on concern for the expected quality of their
children’s lives. These practices, and their prevailing rationale, reinforce
a trend in biomedical ethics that began in the 1970s, one giving a central
role to quality of life in health care decision making