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

Administering drugs

appearance (toothlike shape, yellow color) but as a result of experimental
determinations of likeness. Experiment had uncovered the first example of a
drug producing symptoms similar to those it would cure (cinchona), and if
the law of similars was to be generalized so that the full range of human
afflictions could be treated naturally, many more drugs would have to be tested
to learn what symptoms they produced. Hahnemann soon began such tests on
fellow villagers, then advanced to administering drugs to people suffering with
symptoms that tests had shown the drug to produce and, he believed, curing
them. Within a few years he had developed his homeopathic method to the
point that he felt confident announcing it to the world (in a 1796 article) as a
new system of healing derived from a law “dictated to me by nature herself,”
the law that “when homoeopathically selected” a drug “will imperceptibly
create in the patient an artificial condition, bearing a very close resemblance
to that of the natural disease, and will speedily and permanently cure the
sufferer of his original complaints.”5

Yellow mustard

An approach to healing based on this “law of similars,” Hahnemann
decided, should be called “homeopathy” from the Greek roots homoios (like)
and pathos (suffering). Yet whether spelled “homeopathy” or “homoeopathy”
(a version popular in the nineteenth century and still encountered occasionally),
the notion that like cures like was not an entirely new concept. As a
hunch about nature’s way of healing, it is as old as the human race and has
been applied in every form from the ancient Roman’s faith in the power of
raw dog’s liver to ward off rabies to the seventeenth-century Englishman’s
use of pomegranate seeds to relieve toothache to the eighteenth-century American’s
trust in yellow mustard seed as a preventive of yellow fever. For that
matter, the still popular recommendation of “the hair of the dog that bit you”
as the surest hangover remedy might be thought of as homeopathy

Scottish physician

Among his literary labors was the translation of foreign medical works
into German, and it was through that activity that Hahnemann arrived at his
interpretation of nature’s way of healing. During his first year of work as a
translator, in 1790, he encountered a passage in a text authored by a celebrated
Scottish physician that addressed the action of the drug cinchona. The dried
bark of a South American tree of the madder family, cinchona contains quinine
and had been used in Europe since the mid-1600s to treat malaria and other
fevers. As one of the handful of drugs with unquestioned therapeutic value,
cinchona was a substance of more than ordinary interest to doctors, and Hahnemann

German Samuel Hahnemann

The system’s founder, the German Samuel Hahnemann (1755–1843; Fig.
3-1), got his start as a regular MD, obtaining the degree at Erlangen in 1779.
Afterward, he practiced in a succession of small towns in Germany but steadily
lost confidence in the efficacy of the treatments he had been taught to provide.
“I sank into a state of sorrowful indignation,” he related, after coming to
realize “the weakness and errors of my teachers and books.” Medicine, he
decided, was “founded upon perhapses and blind chance,” its professed remedies
nothing but “Pferdecuren [horse cures]

Horrid disgrace of the human MIND

Silly as they considered Thomson’s steaming-and-puking regimen to be,
nineteenth-century physicians thought of another irregular system as still
more unlikely. Indeed, homeopathy’s practices were so remarkably at
odds with all accepted notions of how nature worked, of how nature conceivably
could work, that they were only to be regarded as utterly impossible. It
was “a stupendous monument of human folly”; it represented “the crowning
exploit of pseudo-scientific audacity”; it constituted a fabric of “astounding
absurdities” and “nonsensical trash.” “This horrid disgrace of the human
mind” was such “a confused mass of rubbish” as to make sense only to
“simpletons” possessed of “imbecile credulity.” All in all, “the fact that men
of sense and character should become its dupes, is one of the most striking
exhibitions of intellectual stupidity and moral obliquity which the history of
fanaticism itself can furnish.”1 Homeopathy was also the most popular of all
alternative systems of practice from the 1850s to the beginning of the twentieth
century.

Use anything that works

Eclecticism had its origins in the work of Wooster Beach, an 1825 graduate
of a regular medical school who soon grew suspicious of the safety of
orthodox remedies. As early as 1827 he opened a school in New York City
to educate students in the full range of gentle botanical medicines, and as
public dissatisfaction with medical orthodoxy grew over the next two decades,
eclecticism became one of the more widely patronized systems. Its botanic
materia medica was steadily enlarged and refined, its educational system expanded
to more than twenty institutions, and more than sixty journals were
founded. Part of eclecticism’s appeal was its unusually pragmatic approach.
Alone among irregular systems, it made no attempt to rationalize the operation
of its medicines with a theoretical superstructure. “Use anything that works”
was its only principle, a rule that allowed practitioners considerable leeway to
do as they pleased and regular doctors wide scope for derision. “The Eclectics
keep themselves alive by swallowing everything which happens to turn up,”
The Medical and Surgical Reporter commented, “until they have become like
Macbeth’s cauldron.” In the eclectics’ “extraordinary conglomeration” of therapies
were to be found “all the ‘ics,’ ‘lics,’ ‘isms,’ ‘cisms,’ ‘ists,’ and ‘pathies’ ”
of all the other alternative systems.47

Members of another botanical healing

Far more numerous were the members of another botanicalmembers of another botanical healing
group, one that originated independently of Thomsonianism. Eclecticism was
exactly what its name implied, a system that borrowed freely from all schools
of practice, taking anything that experience showed to be effective and safe.
Thomsonian remedies were quite popular among eclectics, but so were items
taken from Native American and other botanical traditions, as well as nonmineral
drugs from the allopathic armamentarium. Guided by the rule of vires
vitales sustinete, or “sustain the [patient’s] vital forces,” eclectics abjured all
strong depletive treatments, which meant lobelia as well as calomel and
bleeding.46

Troubled by the strifes of society

Troubled by the strifes of society, depressed by the waste of its
forces and the delays of its columns, he who seeks character for
himself and progress for his kind, oft needs to shelter himself beneath
that divine principle called the time-element for the individual and
the race. Optimists are we; our world is God's; wastes shall yet
become savings and defeats victories; nevertheless, life's woes, wrongs
and delays are such as to stir misgiving. The multitudes hunger for
power and influence, hunger for wealth and wisdom, for happiness and
comfort; satisfaction seems denied them. Watt and Goodyear invent,
other men enter into the fruit of their inventions;