Life quality vs the `quality of life':assumptions underlying prospective quality of life

instruments in health care planning

Tom Koch*

University of British Columbia, Department of Geography, 1984 West Mall, Vancouver, BC, Canada V6T 1Z2

Abstract

Quality of Life is a broad construct used in health planning, health economics, and medical decision-making. It is

also a term that has a long currency in social and sociological literatures. This paper considers the assumptionsunderlying prospective QL instruments in an historical and contemporary context. It argues that as a tool in healthplanning and in clinical decision making life quality as a measurement has its origins in the early eugenics literatureand the social policies that derived from it in ®rst North America, the primary focus of this paper, and later in

Europe. Reference to narrative and social literatures, as well as those involving coping and adaptation, are thenused to critique the assumptions underlying this class of QL instruments. It concludes that to the degree nowcurrent prospective instruments re¯ect a purely physical perspective of ``disease burden'' irrespective of social

conditions they create a context that works against life quality, and in some cases, the continuance of persons withphysical di�erences. 7 2000 Elsevier Science Ltd. All rights reserved.

Keywords: ALS; DALYs; Disability; Eugenics; Euthanasia; HeaLYs; Quality of Life; QALYs

``Quality of life'' (QL) has replaced ``sanctity ofhuman life'' (SL) as the critical value dominatinghealth care and health decision making in North

America (Koch, 1998a). The Sanctity of Human LifeDoctrine asserted that human life is sacred in someunique and special sense (Somerville, 1996). Axiomati-cally, therefore, life was not to be merely maintained

but wherever possible to be nurtured. A fundamentallycommunal value, the SL doctrine argued for the in-clusion of all members of the human community irre-

spective of a person's deviation from the norm. QL

constructs are individualistic and speci®c rather thangeneral and communal, however. Their concern is notwith life itself but instead with a certain standard of

life typically de®ned as an individual or class's adher-ence to or deviation from a ``normal'' physical (or cog-nitive) standard. Where quality of life is perceived byone or another standard as deviant, treatment may be

either withheld or limited. Where it is deemed at leastpotentially acceptable, aggressive treatment will beapplied.

E�ectively, this retrenches the Sanctity of Life's cir-cle of protection, excluding lives deemed unlivablewhere not unworthy by one or another clinical stan-

dard. Given the older doctrine's longevity (Singer,1995, p. 1), and the relative newness of its replacement,

Social Science & Medicine 51 (2000) 419±427

0277-9536/00/$ - see front matter 7 2000 Elsevier Science Ltd. All rights reserved.

PII: S0277-9536(99 )00474-8

www.elsevier.com/locate/socscimed

* Tel: +1-604-714-0348; fax: +1-604-822-6150.

E-mail address: tokoch@attglobal.net (T. Koch).

the rapid and widespread acceptance of QL as a stan-dard in medical ethics, care, and health planning is

remarkable.Assessing this change is di�cult because QL is a

broad concept with a range of both clinical and social

meanings that appear, at times, contradictory. Instru-mentally, a class of generally proscriptive and oftenutilitarian health planning tools shares the QL title

with others that are descriptive and ethnographic.Writings concerning proscriptive tests in health plan-ning and health economics rarely take into account the

more socially descriptive, socially-grounded literatureson life quality, which in turn rarely consider criticallythe prospective instruments of health planning. Indeed,as Shakespeare points out (1998), physical impairments

are often separated from social concerns in ``disability''theories. But prospective tests make a number ofassumptions about the ``disease burden'' attending to

physical and cognitive ``disabilities''. And yet, decisionsresulting from proscriptive QL instruments de®netreatment parameters and thus the lives and life qual-

ities of persons with diagnosed limits. Physical realitiesand the prognosis of this or that condition are suppo-sedly the basis of the proscriptive instruments that in

turn de®ne those parameters, etc.To understand this apparent divide and its rami®ca-

tions it is useful, perhaps, to review the history of QLconstructs in health care. An understanding of the

broad construct's social and clinical origins will hope-fully permit an informed assessment of currentlyaccepted, typically proscriptive health planning instru-

ments. While a complete review is clearly beyond thelimit of this or any other single paper, the intent is tolocate currently accepted QL constructs common to

health policy and analysis within a social and historicalcontext. The argument that results suggests that pro-spective quality of life instruments common to healthplanning, and often to more general medical decision

making in problematic cases, may measure somethingvery di�erent from the necessary life quality of individ-uals living with chronic physical di�erences.

An historical perspective

As a general clinical perspective, QL assumptionswere introduced early in the 20th century by advocates

of the eugenic movement in the United States. Thegeneral argument was that some persons were so dis-abled their deaths were socially preferable to their con-

tinuance. Eugenics could mean judging both who was``better-not-born,'' and deciding who was ``better-o�-dead'' (Pernick, 1996, 15). While most early public

cases addressed the ``feebleminded'' and the severelydisabled (infants with hydrocephalus, for example), asense of esthetics Ð of disgust for deviation from the

norm Ð was a central facet in its development. As an

early and public proponent of eugenics and infanteuthanasia argued, ugliness deprived the ``defect'' of``its humanity and justi®ed depriving it of its life'' (Per-

nick, 1996, p. 64). Used in this manner, QL was adescriptive assessment made by medical personnelbased on the presumed life patterns that would result

from one or another chronic condition. Modern var-iants of this argument have been used to justify the

passive euthanasia of infants with chronic disorders,most famously, perhaps, infants with Down syndromelike Baby Ross and Baby Doe (Lantos, 1987; Koch,

1998a, chap. 2).Through the early decades of the 20th century a

strongly economic rationale combined with clinical aes-thetics to create a systematic argument for non-treat-ment of those whose physical and cognitive abilities

di�ered from the norm. The result was that personswith physical limits or cognitive challenges were seenas both a drag on the national economy, and in many

cases, potential carriers of traits that were deemedsocially undesirable and clinically avoidable. The

resulting policies had broad implications. In the UnitedStates, for example, the US Supreme Court decisionBuck v Bell permitted the forced sterilization of women

believed to be genetically inferior (Buck v. Bell, 1926)and thus socially insupportable. The argument was

that to do less would be to permit the mentally feebleand socially un®t to pass on their de®cits to futuregenerations, thus burdening an advancing society.

A process had taken hold in which descriptiveassessments based upon physical di�erence, clinicalaesthetics, and social values combined to create a pro-

gressive measure of worthy versus unworthy life. Whilethe United States was an early leader in a eugenic

movement distinguishing worthy and unworthy peoplebased on physical deviation from the norm, the move-ment reached its apotheosis in Germany during the

Third Reich. There ®rst the euthanasia, and later, thetermination of persons with a variety of physically dis-

tinguishing conditions was lauded and promoted as asocial good (Burston, 1991). The social cost of personsdeemed ``unworthy'' by reason of physical defect Ð

``dead weight existences'', as they were called by in¯u-ential writers in this area (Binding & Hoche, 1926) Ðeventually resulted in the Wannsee Protocol. The argu-

ment was both clinical and economic: the `unworthylife' was not only physically dependent and thus

socially (and perhaps personally) distasteful, but alsoby de®nition unable to repay society's cost of care. AsGould noted (1981), this perspective ultimately de®ned

the Third Reich's ``®nal solution'' for the physicallyun®t and the socially undesirable. The protocol thusexpanded the de®nition of an unworthy life (one with

inferior life quality) from classes of individuals withspeci®c physical disorders to physically healthy groups

T. Koch / Social Science & Medicine 51 (2000) 419±427420

whose continuance was deemed socially and economi-

cally unsupportable generally (Gypsies, Jews, etc.).Since World War II, judgments of the ``worthy'' life

have been replaced by discussions of life quality based

on the assessment of an individual's physical and cog-nitive attributes. While the language is di�erent, the

result has often been the same. As Pueschel notes, thegeneral assumption has been that ``Persons with Downsyndrome, for example, are socially nonproductive and

exist with a limited life potential that does not meetthe minimal requirements for existence. As a result,their lives are ®lled with su�ering and frustrations''

(Pueschel, 1989, p. 99). The assumption that some per-sons might be ``better o� dead'' based on their pre-

dicted quality of life underlay debate over terminationof Down syndrome infants like Baby Ross and BabyDoe (Lantos, 1987). It also underlies discussions of

medical ``futility'', an argument for non-care of bothpatients whose chronic illness a�ects self-awareness(Brody, 1992), and in other contexts, self-aware

patients with progressive neurological conditions.Finally, the use of ``good eugenics'' in the arena of

genetic testing is seen by some as a method of screen-ing out physically undesirable persons before birth(Shakespeare, 1998). That these trends recast elements

of early, 20th century eugenics in the high fashion oflater, 20th century language is something typicallyignored by those arguing the application of prospective

QL measurements as a ``practical policy issue'' (Per-rett, 1992, p. 186).

A second and distinct quality of life literature devel-oped in the 1920s with a very di�erent focus. In it amore general de®nition of life quality was used to con-

sider the general life of a community, and of individ-uals in that community. From this more descriptiveperspective, life quality was taken as a general measure

of the lived life within both speci®c communities (com-munities de®ned on the basis of class, physical charac-

teristics, linguistic or ethnic allegiance) and thecommunity-at-large. Broadly descriptive and moresocial than clinical, the intent was to describe the qual-

ity of socially constructed life in a community and touse that description to address social concerns.

Inheritors of this legacy included Campbell and hisassociates, who in the 1970s, wrote in¯uentially on``the quality of American life'' (Campbell, Converse &

Rogers, 1976). More recent work in this vein hasextended this social conception of life quality at thecommunity level (see, for example, Brown, Raphael &

Renwick, 1997; Dennis, Williams, Giangreco & Clo-ninger, 1993). This social and sociologically based

work contributed to an increased interest by someresearchers in the quality of life resulting from chronicand physically limiting conditions. This work has

rarely served, however, either to inform or critique theprospective instruments used in North American health

economics and health planning. Indeed, the applicationof a social perspective has had sometimes unforeseen

consequences in clinical situations.In 1977, for example, physician Anthony Shaw

introduced a QL formulation that attempted to de®ne

a meaningful existence as a balance between social sup-port, the potential for interpersonal relationships, andphysical function (Shaw, 1977). What was a non-quan-

titative attempt to consider the relation between socialand physical elements a�ecting the potential life qual-ity of fragile infants was seized upon by others as a

substantive, predictive guide in clinical situations(Shaw, 1988). To his dismay, Shaw's general formu-lation was applied as a triage technique separating chil-dren for whom treatment should be given from those

for whom it might better be withheld (Gross, 1983).What began as a general description of the relationbetween social and clinical elements in assessing both

present and potential life quality became a ``life ordeath formula'' used to separate those deemed worthyof care from those assumed to be unworthy of con-

tinuance (Hento�, 1984).In the late 1980s, the transformation of general,

non-quantitative social observation into prospective,

quantitative instruments continued as a utilitarian-based perspective became increasingly accepted inhealth care planning. Generally accepted in a range ofeconomic and planning venues (Schoemaker, 1982),

the use of this class of prospective, utilitarian instru-ment became increasingly common in both healthplanning and clinical studies (Feeny, 1989). By 1990, a

review of the health care-related QL literature revealedincreasing attention to prospective utilitarian measuresin a literature earlier dominated by descriptive clinical

assessments (Spilker et al., 1990). The acceptance ofproscriptive and generally utilitarian assessments toorder care and resources for patients with chronic dis-orders paved the way for the contemporary class of

QL instruments that permit little attention to the com-plex social contributors to the life quality of personschronic and physically limiting conditions.

QL constructs

The result has been an increasing reliance in healthcare planning, and medical decision making generally,

on quantitative and prospective, health-related QLinstruments (Frisch, 1994; Testa & Nackley, 1994).Their direct concern is not life quality of persons with

chronic conditions but the use of one or another QLconstruct to advance health planning in a context ofscarcity. To this end these instruments purport to

measure potential life quality in the face of disability.These have in turn generated methodological commen-taries on the applicability of one or another QL index

T. Koch / Social Science & Medicine 51 (2000) 419±427 421

and its potential utility in assessing one or another tar-

get group (Testa & Nackley, 1994; Guyatt, Bombardier& Tugwell, 1986) and the potential of that group's QL.Across the class, it is axiomatically assumed these

future-oriented, quantitative tools ``can be applied toindividuals or to population groups to determine theimpact of a particular disease, to work out the e�ects

of an intervention, or to compare areas, populations,or socioeconomic groups'' (Hyder, Rotlant & Morrow,

1998, p. 196).The best known of these instruments include: qual-

ity-adjusted life years (QALYs ) (Baldwin, Godfrey &

Propper, 1990; McDowell & Newell, 1996), disability-adjusted life-years (DALYs) (Murray, 1994) and

health-adjusted life-years (HeaLYs) (Hyder et al.,1998). All share at least three axiomatic assumptions.First, that an individual or group's life quality can be

described in a rigorous manner based solely on thepresence or absence of physical conditions deviatingfrom those of the normal population. Secondly, that

future life quality can be accurately predicted solely onthe basis of current physical condition irrespective of

social values or context. Finally, predictive instrumentsassume that positive life quality can not be achieved inthe presence of physical de®cits. ``This approach uses

the pathogenesis and natural history of disease as theconceptual framework for assessing morbidity andmortality and of interpreting the e�ects of various

interventions'' (Hyder et al., 1998, p. 196).In short, the old eugenic assumption transformed

into a post-war clinical argument is now returned associal science fact: (1) Positive life quality is de®ned bythe absence of physical de®cits. (2) Reduced life quality

necessarily follows upon the fact of their presence. Lifequality can be measured and predicted based on thelevel and nature of physical di�erence. (3) The neces-

sity of this approach is economically demonstrable.Since ``rationing of health care resources is a fact of

life'', allocative approaches leading to ``the most healthfor the money'' are required (Hyder et al., 1998, p.196).

All QL instruments adhering to these axioms ``beara hidden negative assumption that what is important

about a person is his or her injury, disease, de®ciency,problem, need, empty half'' irrespective of other poten-tially compensatory considerations (McKnight, 1994,

p. 25). One can not therefore simultaneously be dis-abled and healthy (Albrecht & Devlieger, 1999). Nor,in theory, can persons with physical conditions deviat-

ing negatively from the social norm claim a positivelife quality. The logical conclusion often drawn is that

monies should be spent ®rst for those persons whoseconditions are correctable and whose return to physicalnormalcy will result in working citizens with an accep-

table life quality.One result has been the default assumption that

euthanasia is an appropriate and logical response tochronically limiting physical conditions. In both aca-

demic and popular culture, euthanasia and physicallyassisted suicide are often advanced for individuals withchronic conditions that diminish their capacities

(Koch, 1996). In North America the support of phys-ician Jack Kevorkian's euthanasia practice exempli®esthis trend. That few of his patients were terminally ill,

or that their desire for death might re¯ect both socialinattention and inferior treatment is a subject that hasengendered almost no discussion (Koch, 1998c). But if

we are our limits, those who will as a result of theirphysical conditions progressively diverge from thenorm should be allowed if not encouraged to die (for areview see, Dworkin & Bok, 1998). A potentially rich

life despite restrictions is, in this formulation, notmerely unconsidered but inconceivable.And yet, people with chronically limiting conditions

often report a positive life quality (Albrecht & Devlie-ger, 1999). Implicitly, this represents a challenge to theaxioms of prospective QL constructs. If the life quality

of those living with physical di�erences is in fact farbetter than what such instruments or assessmentswould predict, the assumptions underlying those

instruments must be reconsidered. To the extent thoseinstruments allocate resources elsewhere in society theymay, in fact, create a context of inferior life quality bydenying support to persons with physical di�erences.

Here we brie¯y review the literature surround the lifequality of persons with chronic physical challenges asa way to more broadly consider the assumptions

underlying QL instruments in health care and plan-ning. To what degree are assumptions of diminishedlife quality based upon physical di�erence supported

by the reports of persons living with those di�erences?

Surrogate perceptions

``The external determination of a diminished or

unacceptable life quality is often not shared by the per-son whose life is being judged'' (Cella, 1992). Qualityof life determinations by normal, healthy persons tend

to re¯ect the prejudice, fear, or concerns of the obser-ver, not those of the person whose lived existence isbeing judged. Thus, ``It often happens that lives whichobservers consider of poor quality are lived quite satis-

factorily by the one living that life'' (Jonson, Siegler &Winslade, 1982, p. 111). This is true whether the obser-ver is a ``professional'' Ð physician, nurse, or home

aide Ð or an ``informal'' surrogate from the individ-ual's family (Sprangers & Aaronson, 1992).For example, only 18% of Emergency Room pro-

fessionals surveyed believed traumatic spinal cordinjury patients could achieve an acceptable life quality.This contrasted sharply with positive life valuations

T. Koch / Social Science & Medicine 51 (2000) 419±427422

reported by 92% of the persons who had survivedspinal chord injury (resulting in long-term disability)

(Gerhart, Koziol-McLain, Lowenstein & Whiteneck,1994). Similarly, family caregivers for persons usingarti®cial breathing apparatus seriously underestimated

the life satisfaction of the respirator dependent people,surveyed independently, whose lives they shared (Bach& Campangolo, 1994). Simply, surrogate judgments

often do not accurately re¯ect patient preferences(Covinsky et al., 1996).Even where quality of life data is based upon sur-

veys of persons with disabilities, that data remains sus-pect. Where surveys and questionnaires begin with theassumption of ``disease burden'' and a medical modelof life quality, the assumptions of those positions Ð

not the individual's state Ð is often what is typicallymeasured. The questions asked and the tenor of theirpresentation de®ne the parameters of the data while

limiting the potential for survey population response(Gurbrium, 1995). It is a dialogue with only onespeaker, one in which apparently rich response can

only match the questions. The interplay betweenassessed and assessor is, as another researcher lamen-ted, rare considered critically (White, 1994).

Where a diminished life quality is reported, it mayresult not from the limits of a chronic condition but,instead, the extraordinary stigma under which persons-of-di�erence often labor (Powell & Lowenstein, 1996).

Simply, a self-reported inferior life quality may resultnot solely from the underlying physical condition con-sidered by proscriptive QL instruments but from a per-

ceived social censure of people who are presumed tobe ``useless'' and a drain upon communal resources.As Miller points out, the isolation that often follows

upon the lack of social support for persons withchronic de®cits has been a critical element in a numberof legal cases involving disabled persons and euthana-sia (Miller, 1993). In a recent report, for example, a

woman with chronic heart disease described her neigh-bors' reaction to home visits by a homemaker and aphysician. ``Some of my neighbors say, `Why do you

have a homemaker? Why does your doctor come tothe house?' They think this is costing them a lot ofmoney in, you know, in taxes'' (Koch, 2000). Her pain

at this censure was evident.

Narrative literature

In sharp contrast to the current literature on life

quality and disease burden in health economics andhealth planning, an evolving qualitative literatureevokes and at times celebrates the often richly textured

life of persons with physically limiting conditions, andthe lives of the companions who facilitate their physi-cally limited lives. This body of work, part of the evol-

ving ``disability rights'' literature, o�ers insights into

the emotionally complex and often socially integratedtexture of life quality in the context of physical andcognitive limits. In the arena of aging, for example,

much of this writing has centered on the richly inter-personal relationship existing between fragile seniorand his or her adult caregiver (Koch, 1990, 1993,

1998b; Roth, 1991; Ignatie�, 1991). This literatureincludes both patient-generated and researcher-assisted

narratives describing the lives of both fragile seniorsand their caregivers. Its general conclusion is that theappearance of diminished life quality Ð of un-health

in the context of geriatric limits Ð obscures a set ofpowerful and worthwhile interpersonal and social reali-ties that can not easily be quanti®ed by standard quali-

tative instruments (Koch, 1998a).In an allied genre, persons with severe neurological

impairments themselves argue the potential of a self-perceived strong life quality in the context of extremephysical limits. In some cases this literature is autobio-

graphical. In others, it is the work of writers and socialscientists involved with the neurologically impaired. In

either case, the underlying clinical conditions include,in a partial list, poliomyelitis (Kaufert & Lockert,1988; Kaufert & Kaufert, 1984) , multiple sclerosis

(Koch, 1998b) Lou Gehrig's Disease (AmyotrophicSclerosis) (Young, Marshall & Anderson, 1996) and``locked in syndrome'' (Bauby, 1997). Countering a

central axiom of QL constructs (Albrecht & Devlieger,1999), these writings insist one may have a very accep-

table life quality despite even the most severe physicallimitation.In North America, the distance between standard

assumptions concerning life quality and the reality oflife with restrictions has focused in recent years on thelives of persons with Amyotrophic Lateral Sclerosis,

ALS. Made famous as the disease of physicist and cos-mologist Stephen Hawking, the dramatic physical

limits resulting from this progressive, chronic, neuro-logical condition has made it, for some, the very de®-nition of not merely the limited but more precisely the

unworthy life (Young & McNicoll, 1998). In 1996, forexample, two researchers argued in The Lancet thateuthanasia should be introduced ®rst for those with

neurological conditions like (fulminating) MS andALS that de®ne unacceptably limited life qualities

(Mason & Mulligan, 1996). Simply, the physical limitsresulting from these conditions are so severe that deathis presumed to be preferable to the resulting restricted

life. This was the argument advanced in law by aCanadian woman with ALS (Rodriguez v. BritishColumbia, 1993) seeking a ``right'' to euthanasia.

Why not? If there is a burden to disease, ALS has it.In the normal course of the illness, patients move from

numbness to a growing paralysis culminating in a res-piratory crisis requiring permanent ventilation. Survi-

T. Koch / Social Science & Medicine 51 (2000) 419±427 423

val at this stage of the illness means near total physicaldependence, a state re¯exively assumed to be insuppor-

table (Koch, 1996). It is not surprising, therefore, thatJack Kevorkian self-consciously sought a person withthis disease as the subject of his ``initial event'' after

the passage of Michigan's ban on assisted suicide(Marker, 1994). It virtually assured public sympathyfor termination of a life so restricted physically as to

be regarded generally as insupportable. Given the gen-eral QL assumptions, it was perhaps inevitable thatKevorkian's ``practice'' was heavily slanted to patients

with ALS (Young & McNicoll, 1998) and other neuro-logically limiting conditions (Koch, 1998c).And yet, some ALS patients who have written about

or publicly discussed their condition argue a very

di�erent view. For those with communicative devices,familial support, and often work, the restrictive con-dition has been a ``life enhancing condition'' (Gold-

blatt, 1993), an ``an adventure in life'' and a tool forspiritual exploration (Young & McNicoll, 1998). Whilethe life style it dictates demands a way of being di�er-

ent from the norm, a necessarily inferior life quality isnot the inevitable result. The physically restricted lifedemands instead a perspective that may itself o�er sig-

ni®cant rewards. It is, one writer with ALS says, ameans of being whose physically enforced temporequires a detailed and focused perspective that is itselfextraordinarily rich and rewarding (Graves, 1997).

This is not to deny the real and in many way cata-strophic a�ects of a condition causing extreme physicallimitations. We are physically embedded (Post, 1993,

pp. 3±4) and that physicality creates realities and dis-tinctions that de®ne an individual's context. Nor do Isuggest that all those with ALS ®nd its a�ects an

experiential boon. To the degree the e�ect of this orother physically restrictive conditions may be mitigatedby other factors, however, the ``disease burden'' itselfis diminished. To the extent the self-perceived quality

of life of a person with such di�erences is good, theassumption of a quality-of-life instrument based solelyon a ``disease burden'' is necessarily questioned.

Accommodation

By equating life quality with physical normalcy,prospective QL instruments generally Ð and utilitar-ian-based instruments speci®cally Ð ignore the

degree to which people successfully adapt to a lifewith physical restrictions. A generation ago, Sackscalled the process of accommodation to chronicallylimiting conditions, ``the least discussed, the least

understood, the most mysterious of phenomena''(Sacks, 1982, p. 35). In recent years, this literaturehas advanced, however, and its applicability to the

self-reported, positive life quality of persons withchronic conditions is being considered. In a recent

article it was, for example, applied to the ``positivelife experiences'' also reported ``against all odds'' bypersons with ALS (Young & McNicoll, 1998).

Successful accommodation to changes in one'sphysical status Ð or the physical status of a lovedone Ð proceeds in a manner that is well de®ned

and typically dependent on a set of cultural, inter-personal, and social factors. Based on a generalcognitive theory of stress and coping (Folkman,

Chesney, McKusick, Irsonson, Jonshnson & Coates,1996), accommodation includes a ``cognitive reap-praisal'' (Wethington & Kessler, 1991) and refram-ing of one's life history and goals (Cohen &

Mount, 1992) if one is to ``construe bene®ts fromadversity'' (Young & McNicoll, 1998, p. 41).I have elsewhere argued a similar pattern of

change is evident whenever a change Ð physical,marital, social, or spiritual Ð fundamentally altersa person's life style (Koch, 1998b). Returning to a

positive life quality in all such cases requires,among other things, an acceptance of permanentchange, a life review, and a reordering of personal

priorities. Often, a signi®cant step in adapting to aphysical di�erence is acknowledging the fundamentalinterdependence we are assumed to share (Etzioni,1988, pp. 4±5), as opposed to the independence

western culture advances as a primary value.Because health-related QL measurements typicallyfocus solely upon both the individual and the physi-

cal without concern for the communal and thesocial, they generally ignore the potential of accom-modation and adaptation.

In this context it is important to recognize the fre-quency with which persons with chronic illnesses willchange their de®nitions of life quality, and as a result,alter positions they held in normalcy. In one recent

study of AIDS patients, for example, about one-fourthwho had completed advance directives changed theirminds about life-sustaining treatment over a four-

month period (Weissman et al., 1999). Of participantswho initially said they would want cardiac resuscita-tion, 23% later decided to forego it. Conversely, 34%

who initially said they would decline this care latersaid they would accept it. More generally, across theexperiential and narrative literatures people discover

the lived reality of a physically restricted life is basedupon the complex mediation of personal values andsocial circumstances whose reality cannot be predicted.The interrelation of social context, emotional adap-

tation and changing individual perspectives representsa complex process typically ignored by one-dimen-sional instruments attempting to assess and then pre-

dict the life quality of a person with a chronic andphysically debilitating condition.

T. Koch / Social Science & Medicine 51 (2000) 419±427424

Social support

Not all persons of di�erence successfully adapt to

physically limiting, chronic conditions. Some utilize arange of psychological and social coping mechanismspermitting a positive life quality within the context of

physical limits. Others, of course, do not. For thosewho make the transition, however, mitigating thee�ects of even severe physical limits to fashion a self-

perceived ``healthy'' life and rich life quality is a resultof at least three factors. The ®rst is the reality of a per-son's embeddedness, his or her physical and cognitive

condition. The second is the support of immediatefamily members and community support. Principal

caregivers and supportive social support personnel(nurses, physicians, social workers, therapists, etc.)may assure a context in which insupportable disability

becomes merely vexing physical di�erence. Thirdly, ac-commodation demands supportive devices Ð wheel-chairs, mobility vans, communicative devices, etc. Ð

without which a person may be physically and inter-personally isolated. The degree to which their purchaseand subsequent maintenance is socially supported

®nancially will determine in part the degree to whichpractical adaptation to physical di�erence is possibleand a positive life quality may result.

The limits of social support Ð both for familialcaregivers and for the physically restricted person Ðmay create a context in which life quality is indeed

unacceptable and the e�ects of a disease truly burden-some. That ``burden of disease,'' however, sometimes

results not from physical limits alone, but more pre-cisely form their occurrence in a context of minimalsupport (Koch, 1986; Koch, Braun & Pietsch, 2000).

To discuss life quality without attention to social issuesis to ignore the socially as well as physically embeddednature of human life. But to consider the social with-

out attention to the physically embedded nature of theperson is to deny the reality of an individual's physi-cality. It was the entwined nature of the clinical and

social that Shaw ®rst attempted to express in his QLformulation in 1977. The relation between these el-ements is not easily quanti®ed, however. The use by

others of his formulation as a method of simple triagelater caused him real distress (Shaw, 1988).Perhaps the paradigmatic example of an emotionally

and socially successful if physically restricted life isthat of physicist and cosmologist Steven Hawking.

Despite the support of his university, and of the Britishnational medical service, Hawking and his family havebeen very clear about the social and ®nancial needs of

persons with physical restrictions. His most famousbook, A Brief History of Time, was written in part toassure su�cient capital to acquire the necessary sup-

portive materials for a health if physically restrictedlife (White & Gri�n, 1992). Measured by any proscrip-

tive QL construct, his physical restrictions (near com-plete physical paralysis, respiratory ventilation, etc.)

are insupportable. But with familial and professionalsupport, as well as advanced mobility and communica-tive devices, his ``life quality'' is, in his words,

enhanced and not diminished. ``I am certainly happiernow'', he wrote when considering his life pre and post-diagnosis (Hawking, 1993, p. 167).

The ``disability paradox'' (Albrecht & Devlieger,1999) is not that people with physical di�erences reportpositive life quality. It is instead that we praise and

admire those who make social contributions despitephysical limits while assuming life quality can beassessed solely on the basis of physical normalcy.Quadriplegic actor/director Christopher Reeves, Cana-

dian amputee runner Terry Fox, wheelchair athleteslike Canadian Rick Hansen: all are admired for thelives they have led within the context of physical di�er-

ence. And yet, prospective, health related QL con-structs Ð and the culture that supports them Ðassume a restricted life is necessarily less full than one

lived in a state of physical normalcy irrespective of anyother context or condition.

Conclusion

This presents a rather provocative challenge for pub-lic health professionals. If QL instruments based onthe medical model do not adequately acknowledge the

socially useful, intellectually full and interpersonallyrich lives reported by persons like Hawking, theassumptions underlying these instruments must be

reassessed. To the degree that ``disease burden''measures a clinical condition without reference to thesocial context in which it occurs, the resulting assess-ment will be necessarily incomplete.

While some researchers have long considered the re-lation between social contexts and physical realities intheir consideration of the life quality of persons with

chronic conditions, the conclusion of this review is thattheir perspective has been a relatively ine�ectual voicein the history of 20th century medical decision making.

From the eugenics of the early part of the century tothe euthanasia debates that have marked its last dec-ades, QL de®nitions based on physical deviation fromthe norm have dominated deliberations in the arenas of

resource allocation, health planning, and medical de-cision making. This has been especially true whenassumptions of economic scarcity have compelled o�-

cials to reduce spending and focus available resourceson the needs of some groups to the exclusion of others.To the extent that prospective QL instruments are

used in health care planning, those with ``diminishedlife quality'' resulting from chronic conditions willalmost certainly come up short when their needs are

T. Koch / Social Science & Medicine 51 (2000) 419±427 425

weighed against those of a ``healthy'' but ``at risk''population. The prospective tools used to predict life

quality, and the general mechanisms of assessmentsargue for a ``cost-e�ective'' and e�cient approach thathas historically denied the potential of persons whose

physical, cognitive, and social contexts diverge fromthe social norm. In this context the complex andentwined relation between social, familial and physical

elements attending upon di�erence Ð and the litera-tures that describe these relations Ð are typicallyignored in favor of one-dimensional, predictive instru-

ments.Some have argued that dividing people into cat-

egories of acceptable and unacceptable life quality is arational and impartial judgment. ``It is not a moral

judgment we are making, if we think that someone'slife is so empty and unhappy as to be not worth liv-ing'' (Glover, 1997, pp. 52±53). And yet, it is hard to

conceive of any judgment that is more morally andethically embedded. In this literature we become notcommunal persons with histories and potential but the

diseases and conditions with which we coexist. Tojudge our quality of life on the basis of a physical limitor deviation without attention to social context and re-

lation is to make us all unpersons unworthy of supportor attention from those who are in theory dedicated tothe common weal of public health. Morally, we areobjecti®ed and reduced to ciphers of di�erence, ``bur-

dens'' in a community seeking assets for growth. As aresult, the supportive services that might change an``empty'' life of physical restriction into a full life in

the context of di�erence are withheld. It is a tautologyrevealed, one in which di�erence becomes disabilityand issues of social relation (and thus community sup-

port or indi�erence) are extracted from the equation.The result is the ``unworthy'' life of the old-styleeugenics updated, of course, by apparently stringentsocial science measurements.

References

Albrecht, G. L., & Devlieger, P. J. (1999). The disability para-

dox: high quality of life against all odds. Social Science &

Medicine, 48, 977±988.

Bach, J. R., & Campangolo, D. I. (1994). Psycho-social

adjustment of post-poliomyelitis ventilator-assisted individ-

uals. Archives of Physical Medicine and Rehabilitation 934±

939.

Baldwin, S., Godfrey, C., & Propper, C. (1990). Quality of life

perspectives and policies. London: Routledge.

Bauby, J. (1997). The diving-bell & the butter¯y. London:

Fourth Estate.

Binding, K., & Hoche, A. (1992). Permitting the destruction

of unworthy life: its extent and form. Lipzig, Felix Meiner

Publishing. (Walter Wright, Trans; original work pub-

lished1926). Issues in Law and Ethics 8(2), 231±265.

Brody, H. (1992). Assisted death Ð a compassionate response

to medical failure. New England Journal of Medicine, 327,

1384±1388.

Brown, I., Raphael, D., & Renwick, R. (1997). Quality of

Life: Dream or Reality? Life for people with developmental

disabilities in Ontario. University of Toronto Quality of

Life Research Unit, Toronto, Canada.

Burston, V. (1991). Breeding discontent. Saturday Night,

15(16), 62±67.

Campbell, A., Converse, P. E., & Rogers, W. I. (1976). The

quality of American life. New York: Russell Sage.

Cella, D. F. (1992). Quality of life: the concept. Journal of

Palliative Care, 8(3), 8±13.

Cohen, S., & Mount, B. (1992). Quality of life in terminal ill-

ness: De®ning and measuring subjective well-being in the

dying. Journal of Palliative Care, 8(3), 40±45.

Covinsky, K. E., Lander®eld, C. S., Teno, J. et al. (1996). Is

economic hardship on the families of the seriously ill as-

sociated with patient and surrogate care preferences?

Archives of Internal Medicine, 156, 1737±1741.

Dennis, R. E., Williams, W., Giangreco, J. F., & Cloninger,

C. J. (1993). Quality of life as context for planning and

evaluation of services for people with disabilities.

Exceptional Children, 59(6), 499±512.

Dworkin, G., & Bok, S. (1998). Euthanasia and physician

assisted suicide. Cambridge, MA: Cambridge University

Press.

Etzioni, A. (1988). The moral dimension: Toward a new econ-

omics. New York: The Free Press.

Feeny, D. H. (1989). Incorporating utility-based quality-of-life

assessment measures in clinical trials: two examples.

Medical Care, 27, S190±S203.

Frisch, M. B. (1994). Quality of Life Inventory. National

Computer systems, Product Number 02104, Minneapolis,

MN.

Folkman, S., Chesney, M., McKusick, L., Irsonson, G.,

Jonshnson, D. S., & Coates, T. J. (1996). Translating cop-

ing theory into an intervention. In: Eckenrode J, editor. In

The social context of coping (pp. 239±260). New York:

Plenum Press.

Gerhart, K. A., Koziol-McLain, J., Lowenstein, S. R., &

Whiteneck, G. (1994). Quality of life following spinal cord

injury: knowledge and attitudes of emergency care provi-

ders. Annals of Emergency Medicine, 23(4), 807±812.

Glover, J. (1977). Causing death and saving lives.

Harmondsworth: Penguin.

Graves, F. G. (1997). Writing for his life. American

Journalism Review, (March), 25±31.

Gross, R. H. (1983). Early management and decisionmaking

for Myelomeningocele. Pediatrics, 72, 450±458.

Goldblatt, D. (1993). A life-enhancing condition: the

Honorable Mr Justice Sam N. Filer. Seminars in

Neurology, 13, 375±379.

Gould, S. J. (1981). The mismeasure of man. New York:

Norton.

Gurbrium, J. (1995). Voice, context, and narrative in aging

research. Canadian Journal on Aging, 14(1), 68±81.

Guyatt, G. H., Bombardier, C., & Tugwell, P. X. (1986).

Measuring disease-speci®c Quality of Life in clinical trials.

Canadian Medical Association Journal, 134, 889±895.

T. Koch / Social Science & Medicine 51 (2000) 419±427426

Hawking, S. (1993). Black holes and baby universes. New

York: Bantum Books.

Hento�, N. (1984). They're putting babies on death row in

Oklahoma. The Village Voice, 1 May, 8. (Quoted in Shaw,

(1988)).

Hyder, A. A., Rotlant, G., & Morrow, R. H. (1998).

Measuring the burden of disease: healthy life-years.

American Journal of Public Health, 88(2), 196±202.

Ignatie�, M. (1991). Scar tissue. London: Chatto & Windus.

Jonson, A. R., Siegler, M., & Winslade, W. J. (1982). Clinical

ethics. New York: Macmillan.

Kaufert, J., & Lockert, D. (1988). The breath of life: medical

technology and the careers of people with post-respiratory

poliomyelitis. Sociology of Health & Illness, 10(1), 24±40.

Kaufert, P., & Kaufert, J. (1984). Methodological and con-

ceptual issues in measuring the long-term impact of dis-

ability: the experience of poliomyelitis patients in

Manitoba. Social Science & Medicine, 6, 609±619.

Koch, T. (1990). Mirrored lives: Aging children and elderly

parents. New York: Praeger Books.

Koch, T. (1993). A place in time: Care givers for their elderly.

New York: Praeger Books.

Koch, T. (1996). Living vs dying `with dignity', a new per-

spective on the euthanasia debate. Cambridge Quarterly on

Healthcare Ethics, 5(1), 50±61.

Koch, T. (1998a). The limits of principle: Deciding who lives

and what dies. Westport, CT: Praeger Books.

Koch, T. (1998b). Second Chances: Stories of Crisis and

Renewal in Our Everyday Lives. Turnerbooks, Toronto,

Canada. First published 1993 as Watersheds: Crisis and

Renewal in Our Everyday Lives. Lester, Toronto.

Koch, T. (1998c). On the subject(s) of Jack Kevorkian, M.D.:

a retrospective analysis. Cambridge Quarterly of

Healthcare Ethics, 7, 436±442.

Koch, T. (2000). Age speaks for itself: Silent voices of the

elderly. Westport, CT: Praeger Books.

Koch, T., Braun, K., & Pietsch, J. (2000). Multicultural per-

spectives in bioethics: end-of-life decisionmaking. A re-

sponse to `Di�erence and the delivery of healthcare'.

Cambridge Quarterly of Healthcare Ethics, 9(1), 124±128.

Lantos, J. (1987). Baby Doe ®ve years later: Implications for

child health. New England Journal of Medicine, 327, 444±

447.

Mason, J. K., & Mulligan, D. (1996). Euthanasia by stages.

The Lancet, 347, 810±811.

Marker, R. A. (1994). ``Doctor Death'' ®nds a mouthpiece.

The Human Life Review, 53, 52±59.

Miller, P. S. (1993). The impact of assisted suicide on persons

with disabilities Ð is it a right without freedom? Issues in

Law & Medicine, 9(1), 47±62.

McDowell, I., & Newell, C. (1996). In Measuring health: A

guide to rating scales and questionnaires (2nd ed.) (pp. 23±

24). New York: Oxford University Press.

McKnight, J. (1994). Two tools for well-being: Health systems

and communities. American Journal of Preventive Medicine

(Suppl: Medicine in the Twenty-®rst Century), 10(3), 23±

26.

Murray, C. J. (1994). Quantifying the burden of disease: the

technical basis for disability adjusted life years. In C. J.

Murray, & A. D. Lopez, Global comparative assessments in

the health sector. Geneva: World Health Organization.

Pernick, M. S. (1996). The black stork: Eugenics and the death

of `defective' babies in American medicine and motion pic-

tures since 1915. New York: Oxford University Press.

Perrett, R. W. (1992). Valuing lives. Bioethics, 6(3), 186±199.

Post, S. G. (1993). Inquiries in bioethics. Washington, DC:

Georgetown University Press.

Powell, T., & Lowenstein, B. (1996). Refusing life-sustaining

treatment after catastrophic injury: ethical implications.

Journal of Law, Medicine & Ethics, 24(1), 54±61.

Pueschel, S. M. (1989). Ethical considerations in a life of a

child with Down syndrome. Issues in Law & Medicine,

5(1), 156±157.

Rodriguez v. British Columbia. (1993). S.C.J. 94, September

30.

Roth, P. (1991). Patrimony: A true story. New York: Simon

& Schuster.

Sacks, O. (1982). Awakenings (revised edition). London: Pan

Books.

Schoemaker, P. J. (1982). The expected utility model: its var-

iants, purposes, evidence, and limitations. Journal of

Economic Literature, 220, 529±569.

Shakespeare, T. (1998). Choices and rights: eugenics, genetics,

and disability equality. Disability & Society, 13(5), 665±

681.

Shaw, A. (1977). De®ning the quality of life: A formula with-

out numbers. Hastings Center Report, 7(5), 10±12.

Shaw, A. (1988). QL revisited. Hastings Center Report, 18(2),

10±12.

Singer, P. (1995). Rethinking life and death: The collapse of

our traditional ethics. New York: St Martin's Press.

Somerville, M. A. (1996). Genetics, reproductive technologies,

euthanasia, and the search for a new societal paradigm.

Social Science & Medicine, 42(12), ix±xii.

Spilker, B., Molinek, F. R. et al. (1990). Quality of Life bibli-

ography and indexes. Medical Care, 28(12) Supplement.

Sprangers, M. A., & Aaronson, N. K. (1992). The role of

health care providers and signi®cant others in evaluating

the quality of life of patients with chronic disease: a

review. Journal of Clinical Epidemiology, 45(7), 743±760.

Testa, M. A., & Nackley, J. F. (1994). Methods for quality of

life studies. Annual Review of Public Health, 59, 535±559.

Weissman, J. S., Haas, J. S., Fowler, F. J. et al. (1999). The

stability of preferences for life-sustaining care among per-

sons with AIDS in the Boston Health Study. Medical

Decision Making, 19, 15±26.

Wethington, E., & Kessler, R. C. (1991). Situations and pro-

cesses of coping. In J. Eckenrode, The social context of

coping (p. 13 29). New York: Plenum Press.

White, B. C. (1994). Competence to consent. DC: Georgetown

University Press, 1994. Quoted in DeRenzo, E. G. (1996).

Review of competence to consent. Journal of Law,

Medicine & Ethics, 24(2), 156±157.

White, M., & Gri�n, J. (1992). Stephen Hawking: A life in

science. New York: Penguin Books (pp. 233±234).

Young, J. M., & McNicoll, P. (1998). Against all odds: posi-

tive life experiences of people with advanced amyotrophic

lateral sclerosis. Health and Social Work, 23(1), 35±43.

Young, J., Marshall, C., & Anderson, E. A. (1996).

Amyotrophic Lateral Sclerosis Patients' perspective on use

of mechanical ventilation. Health and Social Work, 19(1),

253±260.

T. Koch / Social Science & Medicine 51 (2000) 419±427 427