Future states: the axioms underlying prospective, future-oriented, health planning instruments

Social Science and Medicine 52 (2001) 453–465

Future states: the axioms underlying prospective,future-oriented, health planning instruments

Tom Koch*

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

Abstract

Proscriptive planning exercises are critical to and generally accepted as integral to health planning at varying scales.These require specific instruments designed to predict future actions on the basis of present knowledge. At the macro-level of health economics, for example, a number of future-oriented Quality of Life Instruments (QL) are commonly

employed. At the level of individual decision making, on the other hand, Advance Directives (AD’s) are advanced as ameans by which healthy individuals can assure their wishes will be carried out if at some future point they areincapacitated. As proscriptive tools, both instrument classes appear to share an axiomatic set whose individual partshave not been rigorously considered. This paper attempts to first identify and then consider a set of five axioms

underlying future oriented health planning instruments. These axioms are then critiqued using data from a pre-testsurvey designed specifically to address their assumptions. Results appear to challenge the validity of the axiomsunderlying the proscriptive planning instruments. # 2001 Elsevier Science Ltd. All rights reserved.

Keywords: Advance directives; Bioethics; Disabilities; Quality of life measurements

In North America generally, and especially in theUnited States, planning in advance of chronic illness orincapacity has become an increasingly accepted practice

for both health planners and for individuals. In healtheconomics, for example, cost-utility analysis presents amethod by which the relative cost of specific medical

interventions can be compared in terms of the healthstatus they are expected to produce (Freyback &Lawrence, 1997). More generally, individuals are urgedwhile healthy to set down ‘‘advance directives’’ (ADs) }

living wills, durable powers of attorney for health care,etc. (Post, Blustein & Dubler, 1999) } that will guide

and perhaps limit their treatment in the event of aserious health care emergency.Significant but largely distinct literatures have

grown around both streams of prospective instruments.In the arena of utilitarian health planning, this isfocused upon methodological and conceptual considera-

tion of a variety of future-oriented instruments.1

These include, in a partial listing: Quality AdjustedLife Years (QALYs) (Cohen, 1996); disability-adjustedlife-years (DALYs), a ‘‘special kind’’ of QALY

(Tsuchiya, 1998, p. 268), and Healthy Life Years(HeaLYs) (Hyder, Rotlant & Morrow, 1998). Ingeneral, these instruments calculate for a given

procedure the average number of additional life yearspotentially gained through a specific interventionmultiplied by a judgment of the quality of life in each

of those years (McDowell & Newell, 1996). All seek tomeasure the ‘‘burden of disease’’ in a manner thatensures ‘‘that resource allocation choices lead to the

most health for the money’’ (Hyder, Rotllant &Morrow, 1996, 1998).Healthy people are asked to imagine that ‘‘they are

suffering from a chronic condition for which the

symptoms, functional limitations, and a pain are

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

E-mail address: [email protected] (T. Koch).1While the literature in this area is diverse and international,

the paper’s focus is the North American, and especially

American use of future-oriented instruments in health planning.

Space does not permit the analysis of the range of international

perspectives on these issues } needed though it may be } or

the manner in which different countries have adapted these

instruments and the concepts they represent in an individualis-

tic manner.

0277-9536/01/$ - see front matter # 2001 Elsevier Science Ltd. All rights reserved.

PII: S 0 2 7 7 - 9 5 3 6 ( 0 0 ) 0 0 1 5 4 - 4

described. They are then asked to image that. . .they areoffered an operation that, if successful, would result in

complete recovery’’ (McDowell & Newell, 1996, 23–4).The operation carries, however, a risk of death. Therater is thus asked how great a risk of mortality they

would tolerate to avoid remaining in the condition firstdescribed. With variations for questions and context,persons are thus asked to define the degree of risk theywould accept to achieve a ‘‘healthy’’ as opposed to a

physically restricted life. Implicitly, the process assumesindividuals have the background to judge both the limitsof specific conditions and what their reactions to them

might be.Similarly, in the future-oriented class of AD instru-

ments, individuals are asked to define while healthy the

degree of disability they would be willing to tolerate inextremes. The intent is to provide advance informationto ensure a person’s wishes are fulfilled when and if that

person becomes incapable of making an informeddecision. At what stage of incapacity or restrictionwould life become insupportable to the potential, futurepatient? Would they accept ventilator assistance in

breathing for example? Would they wish to live in amore or less paralyzed (paraplegic, quadriplegic, or‘‘locked-in’’) state? Employed as a means of assuring

patient autonomy in cases of complex medical decision-making, the implicit assumption is, again, that a personhas the knowledge and awareness to judge what he or

she would choose in a medically complex situationinvolving short and potentially long-term physical orcognitive changes.Another type of prospective AD grants broad

authority to an agent who is assigned a decision-making proxy, should the issuer be incapacitated.Here the assumption is that, ‘‘if the patient had

issued an advance directive while capacitated,that directive should guide treatment decisions for her[or him] when she [or he] becomes incapacitated’’

(Blustein, 1999, p. 20). This class of directives thusattempts to represent by proxy a healthy individual’sjudgments on the acceptable quality of a future,

restricted life, following upon specific interventions(respiratory ventilation, for example). In this case, theassumption is that the designated decision maker will (a)act as the patient’s agent in a manner he or she would

approve, and (b) that the patient could accuratelypredict his or her actions in a situation of medicaldistress.

Despite the AD’s importance as a guarantor ofpatient autonomy, its utility presupposes a person’sfuture-oriented preferences will remain constant over

time. Recent studies have shown, however, this is notalways the case. Persons who have completed ADs oftenchange their views about treatment and care over the

course of their illness. In one recent study of AIDSpatients, for example, about one-fourth who had

completed ADs changed their minds about life-sustain-ing treatment over a 4-month period (Weissman, Haas,

Fowler et al., 1999). Of participants who initially saidthey would want cardiac resuscitation, 23% laterdecided to forego it. Conversely, 34% who initially said

they would decline this care later said they wouldaccept it.Nor do ADs necessarily serve as adequate guides for

surrogate decision-makers. Some have blamed this on a

lack of specificity (Fisher et al., 1997). While they mayprovide general directives } treat everything, forexample, or give only palliative care } these are often

insufficient to guide specific decisions in complexmedical situations. Additionally, family members whoact as surrogates may find it difficult to implement

directives that might shorten a person’s life and may beconfused by the often fine judgments required in medicaldecision-making in a complex context (Teno et al.,

1998). This is especially true when a patient’s cleardirectives, issued in health, are changed by that personover the course of an illness (for an example, see Koch,1990, 113–115).

The limits of ADs as useful, predictive instrumentsraise fundamental questions about proscriptiveinstruments generally. Despite the real differences that

attend both quality of life instruments and advancedirectives, they are aggregated here because bothshare a prospective methodology in which persons in

relatively good health are asked to predict how theywould act in extremes. Underlying both is a funda-mental question: Can we expect accurate judgmentsabout the judgments healthy individuals make when

asked to contemplate scenarios involving chronicphysical limits?

Quality of Life (QL) axioms

Underlying both classes of prospective instrumentslies a series of assumptions whose validity has notbeen examined. Together they represent a set of axioms,

untested, self-evident assumptions underlying aparadigm or theory that are assumed a priori to betrue (for an example of their importance in medicalethics see, Koch, 1998c). Indeed, it is precisely

because their validity appears self-evident that axiomsare rarely subject to rigorous critique. There appear tobe five central axioms underlying prospective health

planning instruments generally. They can be statedsimply:

Axiom 1. A person without a chronic physical deficitcan accurately compare healthy and restricted states.

Axiom 1a. (Corollary) Healthy persons have sufficient

knowledge and experience to make judgments about life

T. Koch / Social Science and Medicine 52 (2001) 453–465454

quality and satisfaction in the context of physical limitor disability.

Axiom 2. A healthy person can accurately predict whathe or she would want in extremes.

Axiom 3. Individuals have a core personality whoseperspective and judgments are constant whatever thephysical or social context.

Axiom 4. In public and personal health planning what isimportant is solely the degree to which an individual’s

physical condition deviates negatively from the norm.

Axiom 5. The discrete individual is always the sole and

best judge of appropriate treatment or non-treatment atany moment.

Axiom review

Axiom 1 assumes a healthy person can intelligentlycompare two health states and choose between them.This presupposes (1a.) he or she is sufficiently

knowledgeable about the potential of physically re-stricted lives to be able to accurately weigh thosepossible, future states in an intelligent fashion. If

the rater is generally ignorant in this area he or shewill have no solid basis from which the effects of limitedphysical states can be judged. This knowledge can be

experiential } based on personal association withthose whose physical state is restricted } or referredthrough general information sources (newspapers, radiostories, television documentaries, etc.). Similarly, axiom

2 assumes not only that a person is knowledgeable butalso that he or she can use that knowledge to accuratelypredict his or her judgments in the event of a physically

limiting condition. Even if one is knowledgeable, willthat knowledge be an effective guide to personal choice?What one thinks he or she would do in a future state

may differ markedly from what one in fact does,eventually, in that state.Axiom 3 offers a psychological model of constancy

critical to all assumptions about the efficacy of futurejudgments by healthy persons. Were the constancy of acore personality to be denied, any prospective decisionwould be that of a ‘‘past person’’ and thus unsuitable as

a basis for decision-making in extremes. The assumptionof ‘‘continuous personhood’’ irrespective of physicalcontext has been challenged most notably by Parfit, who

argues a complex interaction between a person’s historyand the degree to which that person’s personality maychange as a result of life events (Parfit, 1973, 1984). This

position and its relation to ADs were recently discussedby Rich (1997).

The fourth axiom, sometimes called the ‘‘medicalmodel,’’ uses ‘‘the pathogenesis and natural history of

disease as the conceptual framework for assessingmorbidity and mortality and for interpreting theeffects of various interventions’’ (Hyder, Rotllant &

Morrow, 1998). Reliance on a solely medical modelhas been critiqued both by those working withpatients facing chronic physical limitations (Young,Marshall & Anderson, 1994), and more generally, by

those advancing a broadly communitarian perspective(Koch, 1994; Kuczewski, 1999). It is held in particularcontempt by writers advancing a ‘‘disabilities

perspective’’ who argue, with Chamie (1995)that physical differences are not illnesses and shouldnot be treated as such. That this axiom underlies the

prescriptive health instrument’s calculation of a‘‘burden’’ of ‘‘lost’’ healthy life years is seen asparticularly odious by these critics (Chamie, 1995;

Pfeiffer, 1998, 505). From the perspective of peopleliving with physical differences, the medical modelresults in what some insist is a eugenic perspective thatmust be resisted.

A general counter-argument is that individual livesand life-choices occur within the context of a familial,and secondarily, a social dynamic that influences

individual choices (Hardwig, 1990). To the extentlife quality results from social and familial support,purely physical criteria will be inadequate. This perspec-

tive remains central to prospective health planninginstruments, and more specifically, to the generaldisability literature. Thus as recently as 1998, authorsdescribed the ‘‘disability paradox’’ as the reportage of

positive life quality by people with chronically limitingphysical deficits (Albrecht & Devlieger, 1998). Theparadox only exists, however, if one assumes that

diminished life quality and satisfaction necessarily resultfrom physical difference, and that the only significantcriteria to consider are those in the medical model

(Koch, 2000a). Thus this axiom, while sometimesdisputed, retains credibility, especially in the field ofdisability studies.

Axiom 5 reflects society’s belief in patient autonomy,and more generally, in individual self-determination. Itis based upon a central principle of modern bioethicsthat assumes the individual is the appropriate locus for

medical choices in cases of physical limit (Beauchamp &Childress, 1994). And yet, some have argued that ‘‘TheKantian self leaves out too much of what it is to be

human’’ (Nelson, H.L. 1995). To the extent personsliving with physical restrictions do so within a familialcontext, the role of the family } as participants and

potential decision makers } should not be discounted(Koch, 1994; Nelson, J.K. 1995; Nelson, J.L., 1992).And because some people may make ‘‘individual’’

decisions based on concerns for relatives who care forthem (caregiver burden, care costs, etc.), those decisions

T. Koch / Social Science and Medicine 52 (2001) 453–465 455

may reflect social and familial concerns rather thansolely personalized, individualistic perspectives.

Methods and testing

Viewed in this manner, the axioms underlying

prospective health instruments present a set of assump-tions that can be tested in various ways. Axiom 1, forexample, could be examined by asking healthy personscompleting prospective health instruments about their

experience with and knowledge of disabilities. Toexamine as many of these axioms as possible, however,a different approach was chosen. A survey was designed

to elicit the perspectives of persons now living withphysical limits. Questions sought first to uncover theirviews prior to diagnosis or injury and the knowledge

base underlying those views. Secondly, the survey wasdesigned to elicit current perspectives of those persons ina manner that allowed changes over time to beconsidered. Simply, a retrospective survey of persons

with disability was designed to examine the axiomsunderlying prospective tests in which healthy people areasked to judge physically limited states.

In the survey’s design and its eventual administration,assistance was sought from members of both generaldisability and disease-specific support and advocacy

groups. These included: the ALS Society of BritishColumbia, the ALS Society of Victoria (BC), the BCCoalition of Persons with Disabilities (BCCPD), and

members of an independent living coalition on Vancou-ver Island (IL). Members of the IL group reviewedseveral draft questionnaires, including one pre-tested byeight persons with Multiple Sclerosis, post-traumatic

brain injury, stroke or other chronic conditions. At thisstage, three areas of concern were identified: questionshad to be easily understood, presented in a manner

permitting an independent response by those withperceptual or motor deficits, and survey questions hadto be sensitive to issues of disability.

Crafting a survey that is both legible and accessible topeople with visual and/or motor limitations presentsvery specific challenges. In the pre-test phase, for

example, persons with visual impairments suggestedquestions be shortened to facilitate oral comprehension.Similarly, they suggested the elimination of follow-up

questions (i.e. If you responded ‘‘yes’’ to question 1.3. . .)requiring participants to remember one, two, or three

prior queries. Assuring ease of response by persons withgross and fine motor deficits was also a concern.At the suggestion of IL co-workers, participants were

given the option of either circling a word describing theirresponse or making a mark along a numbered intensityscale. The former permitted those with gross motordeficits to use a large pencil or magic marker to circle a

word or number reflecting their judgment. Responsesplaced on the scale by either method } circling ormarking on the line continuum } were measured

against the total length of a 10-cm. visual analog scale.The resulting figure was added for each question to acoding worksheet.

To facilitate completion by people with a variety ofphysical deficits, the questionnaire was offered invarying media, including audiocassette, on computer

disk, and in large (18-point) text format. The audioversion had a 3–5 sec blank space in which persons couldrespond orally to each question. The large text versionpermitted persons with limited visual acuity to either

read the questionnaire directly or use a computerizedscanner to bring it into their computer system. In theresulting study, two persons with quadriplegia requested

surveys on computer disk; five persons asked for largetext formats; one person used the audiocassette option.All others responded to a questionnaire presented in

standard, 12-point font.Space was provided for ‘‘Additional Comments’’ in

both tape and print versions for those wishing to addunstructured observations. A complaint by some pre-

test participants was that surveys typically offer littleopportunity for spontaneous responses. To ensure thatanyone wanting to discuss one or another question

would have the ability to do so, each question had acheck box saying, ‘‘I wish to talk about this’’.Researcher assistants were assigned to respond immedi-

ately to any request for discussion. Fig. 1 presents asample question with a check-mark response.The resulting survey is presented here as an Appendix.

All completed questionnaires were coded upon receiptfor both respondent affiliation and diagnosis (ALS,Multiple Sclerosis, etc.). To ensure confidentiality,names were excluded from scoring. At the end of the

Fig. 1. Sample question.


questionnaire, participants were asked to include theirname and address if they wished to speak with

researchers or if they wished a copy of final reportsbased upon its analysis. Those interested in discussingthe survey or its issues were asked to indicate their

preferred medium of communication } fax, telephone,letter, or email } and the appropriate contact number.The final questionnaire was submitted for approval to

participating agencies and groups. They in turn dis-

tributed the survey to their members and collected allresponses. This ensured both the anonymity of partici-pants and general oversight by officials at the participat-

ing agencies. A cover letter accompanying all surveysbriefly described the researcher’s desire to learn frompotential respondents, the voluntary nature of the

participatory experience, and alternative methods ofresponse. Small financial donations were made to theBCCPD, the ALS Society of British Columbia, and the

IL group to acknowledge their support and defray anystaff and mailing costs incurred. Participants wereinformed of this donation.

Respondents

Because of the unusual nature of this project, a pre-test was initiated to determine its potential. Participantgroups were offered packets of questionnaires, and if

needed, additional packets were sent emphasizing one oranother medium (voice, large text, etc.). Participatingorganizations distributed 84 questionnaires to members

whose involvement was solicited through group news-letters and through personal requests. Thirty-fourcompleted questionnaires were returned over a periodof 3 months. While in other circumstances this might be

considered a low response rate it was, in this commu-nity, considered an endorsement. As a nurse and clientservices administrator explained, in apologizing for the

time it took for a questionnaire to be completed andreturned, ‘‘It’s not that people aren’t interested. It’s justthat the things of daily living take so much time and

energy. People want to finish it but the questionnairetakes time and energy to complete. And sometimes thereisn’t enough left over.’’ (McBride, 1999, Personal

communication).Approximately half of the respondents had been

diagnosed with neurological disorders } ALS and MS} while the rest had been diagnosed with a diverse

collection of physical disabilities resulting from injury orillness. Most suffered from gross motor deficits, mobilitydisorders, or both. Table 1 presents a general summary

of respondents by diagnosed condition. ‘‘Other’’ condi-tions included stroke, AIDS, fibromyalgia, cerebralpalsy, traumatic injury, Burger’s disease, and transverse

mylitus. Symptomatically, many people reported multi-ple limitations. For example, those with MS reported

physical weakness, pain, and in some cases, visuallimitations. The person with cerebral palsy also had

suffered a debilitating back injury that limited move-ments and caused continual pain. Respondents withALS reported a range of inhibiting gross and fine motor

deficits although none were, in this study, ventilatordependent.Emphasizing persons with neurological deficits as

respondents was a conscious decision. There is a general

assumption that persons with degenerative neurologicalconditions necessarily have a progressively unsatisfac-tory quality of life unworthy of continuance. Some

euthanasia advocates for example, have argued on thisbasis that physician-assisted suicide should be firstoffered to persons with ALS and MS (Mason &

Mulligan, 1996). Over 40% of the first 72 deathsattributed to Jack Kevorkian involved the euthanasiaof persons with these two conditions (Koch, 1998a).

Because persons with these conditions have been centralto the debate over quality of life and the efficacy ofeuthanasia (Koch, 1996, 1998b), their participation wasseen as critical to this study.

Demographically, 15 respondents were males, 16 werefemales. Three participants elected not to identifythemselves by gender. Of 34 respondents, 13 were

between the ages of 36 and 50 years; 14 were betweenthe ages of 51 and 65 years. Two identified themselves asbeing older than 65 while two others were younger than

35. Three respondents did not include their age. Sixreported they had lived with their illness or disability forbetween 1 and 5 years; ten said they had been living withtheir reported condition for between 5 and 10 years; and

16 said their condition had been extant for more than 10years. Two persons did not respond to this question.Nine of the respondents reported they are at present

working part or fulltime. 17 others reported they werenot working and seven said they were retired, working asvolunteers, or otherwise involved in non-remunerative

activities. One participant did not respond to thequestion. When asked about educational background,13 said they had graduated high school while nine said

they had at least some university training. Fourrespondents reported some graduate school experience,five technical school training in a technical school, andfive others said they had different types of post-

secondary training. A man with quadriplegia had flighttraining, for example. Several respondents marked morethan one educational category.

Table 1

Responding primary conditions (n=34)

MS ALS Paralysis Blindness Mental illness Other

7 9 4 3 2 9


Results

Methodologically, the aim of this work was todetermine the survey form’s utility when applied to agroup of people with diverse physical differences and to

determine what questions if any needed to be revised fora planned, larger study. The small sample size (n=34)precluded any advanced statistical analysis, making itmore a sortie into a statistically rigorous critique than

that critique itself. Still, the data returned is sufficientlycompelling to permit discussion, and to argue fortentative if not definitive conclusions. In reviewing the

data returned, the arithmetic mean for each questionwas calculated based on participant marks or circlesalong the questionnaire’s answer line. A range of 95%

confidence based on the standard deviation of allresponses for each question was then calculated. Whereappropriate, raw data is reported based on respondents

circling or marking along the answer line.Participants first were asked to identify the number of

persons with disabilities or physical limitations they hadknown prior to their own diagnosis or injury (Table 1).

These included friends or relatives with similarly limitingdisabilities (question 1.1); acquaintances with mobilitydeficits (question 1.2); or other persons with voice,

vision, or other, overt physical differences (question 1.3).The intent was to determine what experience they hadwith disability before their injury or diagnosis.

Prior perception

Almost half said they had no previous experience withdisability on the basis of friends or relatives. Approxi-

mately 30% said they had one friend or relative withlimiting disabilities before their diagnosis and injurywhile 15 of 33 respondents said they had known one

such person with any of a range of disabilities (question1.2). Participants reported a slightly greater mean

number of acquaintances with mobility deficits outsidethe family and, not surprisingly, a yet larger number ofpeople with general (voice, vision) deficits. The arith-

metic mean was calculated for each question, using allresponses as measured along the test scale, and thus ismore precise than the raw summary data by categorypresented in the table (Table 2).

Participants then were asked if before their injury ordiagnosis they had considered the possibility they mightsomeday live with physical disabilities (question 1.4) and

whether they had taken their physical health andmobility for granted (question 1.5) (Table 3). Theassumption } not supported by the data returned }

was that those who had earlier been most intimatelyinvolved with persons with chronic limits would be lesslikely to take their own physical health for granted. That

is, if a person’s parent had a chronic condition requiringa child’s assistance that child would, as an adult, have agreater awareness of the possibility of physical limits.The majority of respondents } 27 of 32 answering this

question } said they never previously considered thepossibility they might someday have a physically limit-ing condition. On a scale of 0–10 with 10 representing

those who had carefully and consistently considered thepossibility of a physically limited life, the mean responsewas 0.98. Similarly, 24 of 32 respondents said they had

absolutely taken their health for granted while only tworespondents said they had never done so.These data may explain participant responses to

questions regarding ADs. While all respondents said

they knew what ADs are (n=33), only two said they hadcompleted a living will or AD prior to illness or injury(question 1.10). Most not only took their own health for

granted, but rarely considered the possibility that at

Table 2

Distribution of replies to questions 1.1–1.3

Question 0 persons 1 person 2 persons 3 or 4 persons >5 persons No response mean Confidence level

1.1 16 10 4 0 4 0 1.6 � 0.93

1.2 15 6 4 3 4 1 1.56 � 0.83

1.3) 9 9 4 2 8 2 2.15 � 0.87

Table 3

Distribution of replies to questions 1.4 and 1.5

Question Never Occasionally Sometimes Frequently Mean Confidence

1.4 27 3 2 1 0.98 � 0.74

No Sometimes Mostly Yes Mean Confidence

1.5 2 4 2 24 8.4 � 0.90


some date in the future their physical circumstancemight change. There was no reason, in short, to plan for

a context none expected to occur (Table 3).More interesting, perhaps, was their present uncer-

tainty about ADs (question 1.12). When asked if they

were to fill out an AD today if that directive would bedifferent from one they might have completed beforetheir diagnosis or injury, the response was equivocal. Ona scale of 0–10 (0 equals ‘‘no’’ and 10 equals

‘‘absolutely’’) the mean response was 4.52� 1.5. Simi-larly, persons were uncertain whether before diagnosisor injury they would have assumed themselves capable

of accepting their currently restricted lifestyle (question1.13). On a scale of 0–10 the mean response (n=32) was5.45 (5=‘‘perhaps’’)� 1.34.

To better understand their perception of physicaldifference, participants then were asked whether, priorto accident or disability, they had thought the lives of

people with disabilities were less full (question 1.6) orless valuable (question 1.7) than those of others insociety. Here the results were mixed (Table 4). Sixrespondents did not answer because, they said, they had

never considered the issue. While one third of allrespondents answered negatively, two thirds indicatedthey had to some degree assumed a physically restricted

life by definition would be less full. Similarly, an equalnumber also insisted they had not believed (beforediagnosis or injury) a physically restricted life was less

valuable. A distinction was thus made retrospectivelybetween a ‘‘full’’ life and what makes one or another lifemore or less valuable in society (Table 4).

Current perspectives

Most participants were uncertain whether, prior toaccident or disability, they would have been able toaccept their current, physically restricted life and its

attendant life style. On a scale of 0–10, the meanresponse to question 1.9 } ‘‘Before your diagnosis orinjury would you have been able to easily handle your

current life style? } was 4.9 (‘‘perhaps’’)� 1.5. Tworespondents who did not answer the question said ‘‘Inever thought about it’’. In a second, similar question

(question 1.13) } ‘‘Before your diagnosis or injury,would you have been able to accept your life today?’’ }

the mean response was an equivocal 5.45(� 1.34).

This prior uncertainty makes all the more remarkablethe participants’ strong sense of affirmation regarding

their current, physically restricted lives. When asked(question 2.5) ‘‘Do you consider your life today worthliving?’’ the mean response was a very positive

9.5� 0.387 (n=32). When asked (question 2.3) if ‘‘thereare positive aspects to your life today you would nothave previously anticipated’’, the mean response was astrongly positive 7.24� 1.31. When asked (question 2.7)

to indicate those areas in which life quality wasunexpectedly richer, 13 respondents marked social and13 marked familial areas of relationship. Seven partici-

pants noted an unexpected boon in spiritual areas andseven in areas of their professional affairs. Within thisset } participants were free to check one or more

category } four noted other areas of unexpectedsatisfaction not categorized by the survey (an increasedsense of maturity, of self-awareness, relations to profes-

sional caregivers, etc.). Respondents indicating areas ofpositive life experience including participants who inresponse to earlier questions (question 2.1–2.4) indicatedthat, compared with their lives prior to diagnosis or

injury, they now spent the same or less time with family,friends, and on spiritual matters. The conclusion drawnwas that whatever the quantity of time spent in these

areas } more, less, or unchanged } the quality of theexperience in each area was richer and more meaningful.This agrees with the findings of Tsevat and Sherman

(1999) whose study of HIV-infected persons found astrongly positive life quality, one that was more spiritualand whose daily activities were richer. It similarlyenforces the findings of Young and McNicoll (1998)

whose respondents in a study of the perceived lifequality of persons with ALS (motor neuron disease)reported stronger interpersonal ties and a richer spiritual

life than before diagnosis.

Suicidal impulses

The assumption that persons with chronic, andespecially chronic progressive disorders, experience a

desire for termination has been considered explicitly andimplicitly in a variety of literatures (Kemp, 1993; Koch,1996, 1998a; Miller, 1993). And certainly, some persons

with chronic and chronic progressive disabilities doconsider termination. To consider the issue of suicide asa response to chronic physical difference, survey

Table 4

Distribution of replies to questions 1.6 and 1.7

Question No Perhaps Mostly Yes Never considered Mean Confidence

1.6 11 7 2 8 6 4.0 � 1.48

1.7 22 5 0 1 5 1.08 � 0.84


respondents were asked first whether they had consid-ered suicide before their diagnosis or injury (question

2.8) and then whether they had considered it afterwards(question 2.10). Finally, they were asked whether theywould consider suicide if their condition were to

deteriorate in the future (question 2.9). The assumptionwas that self-termination would be an option consideredfar more frequently post-injury or diagnosis than it hadbeen in a state of normalcy. Further assumed was that

suicide would be a more likely consideration as theseverity of physical restrictions increased.These assumptions were not supported. The mean

response to the first question (question 2.8) was1.83� 0.64 with only two people responding with ascore of 5 or more (occasionally to frequently). A mean

response of 2.38� 0.85 to the second question (question2.10) was only marginally higher. In a review ofindividual responses, as many participants reported

diminished suicidal impulses after diagnosis or injuryas reported greater frequency of ideation. When askedwhether they might consider suicide if their conditionwere to deteriorate in the future, the mean response was

3.9� 1.398. There seemed to be no correlation at thislevel between either an individual’s level of disability orthe nature of his or her condition. The sample was too

small, however, for this issue to be considered rigor-ously.

Social support

A problem arose with questions involving the degree

to which additional social support would improverespondent life quality. Only six said they needed moredaily assistance (question 3.8), marking responses at7.8–10 on the ten-point scale. Seven respondents who

responded negatively to this question, however, com-mented that their caregivers required help or that theyand their caregivers would require help at a future point.

Similarly, when asked specifically about the need foradditional home care, the mean response was 6.02 on ascale of 1–10� 2.19. Again, several who responded

negatively added ‘‘not now,’’ ‘‘not yet,’’ or ‘‘for mycaregiver, perhaps.’’ When asked about specific technol-ogies which might improve their lives, 15 noted that

better telecommunication equipment would materiallyassist their lives; six noted a need for better citytransportation for persons with deficits; and eightindicated a need for both specialized personal vehicles

and for in-home devices. Again, some said they didn’tneed additional technologies ‘‘now,’’ or ‘‘yet’’.Clearly, these questions were not sufficiently specific

to time frame or factor. This section of the survey is inthe process of being rewritten to take into account bothpresent and future time frames as well as the role of

caregivers. In the next iteration, participants will beasked first about the telecommunication, mobility, and

in-home devices they have at present. They will then beasked about their and their caregivers’ current needs,

and separately, about potential future needs.

Study limits

As one peer reviewer noted of an earlier draft, this

approach raises a range of interpretive and conceptualissues that will require careful consideration. Somemight question whether the validity of the memories andperspectives of these respondents should be credited. Do

they remember correctly or not? Are they reportingaccurately? Simply, some may dismiss this work basedon the assumption that the memories of these respon-

dents are unreliable, and perhaps self-servicing. To thisit may be answered that if one accepts the proscriptivejudgments of healthy individuals about how they might

act in one or another health state, the views of peoplewho are living in that state should be at least equallyvalued.Even accepting the validity of these responses, some

might question their relation to the axiom set, and atanother level, their relation to prospective healthplanning instruments generally. This work thus can be

questioned at the level of participant response and at theconceptual level in which the axioms and their relevanceare asserted. Pre-tests are instructive and evocative but

never conclusive. This is especially true when they areinstituted to consider existing assumptions in a new way.Unfortunately, issues of interpretation and application

must await other, hopefully larger surveys in which thesefindings are supported, expanded, or revealed aseccentric.To the extent the perspectives of these respondents are

accepted, how are they to be weighed in social andpolicy debates in health care? And, of course, to whatextent do we accept the axiom set as correct and

relevant? With the work of others who have presentedsuggestive data from small-scale samples (Tsevat, Sher-man & Elwee, 1999; Young & McNicoll, 1998; Young,

Marshall & Anderson, 1994), the data returned by thiswork appears to challenge central assumptions ofcurrent North American health care planning, and

secondarily, bioethics. Further, it appears to supportthe perspective of disability proponents who insist thatphysical difference be perceived not as a solely medicalcondition whose effect can be predicted, but as a

complex social and interpersonal reality.The data presented suffer from the smallness of the

sample and its perhaps imaginative but still atypical

focus upon the memories and current perspectives ofpeople living with physical differences. And yet, theresults of this study confirm and extend those of others

whose similarly small samples have explored the positivelife quality reported by those with physical differences


resulting from injury or illness (Tsevat, Sherman &Elwee, 1999; Young & McNicoll, 1998). With the work

of these and others advocating a more complex view ofthe life of persons with physical differences (for a reviewsee Koch, 2000b), the foundation has been laid for an

expansion of this research in studies involving greaternumbers of participants from these and other commu-nities. As one peer reviewer noted, consideration ofaxioms 1 and 2 would benefit from detailed testing

among physically normal populations. What knowledgedo people completing QALYs, HeaLYs, and DALYshave about the health states they are asked to weigh?

How knowledgeable are physically mundane people whofill out ADs arguing against continuation of care in thisor that physical state?

Finally, the relevance of the axioms themselves mightbe thoughtfully considered in relation to the greater,international literature on prospective health planning.

Different perspectives may be returned if the axioms ofprospective health planning are considered through thelens of European and Asian writings in this area. Almostcertainly, study participants from those cultures will

have different historical knowledge bases. Experiences ofcurrent disability may differ markedly as well, especiallyin those European communities offering greater support

to people with physical limits.

Discussion

The results returned in this pre-test seemed, at the

least, suggestive; offering a potentially valuable insightinto the axiom set underlying prospective healthinstruments. The first two axioms, for example, areclearly challenged by this data. Prior to diagnosis or

injury, persons living with disabilities had little experi-ence with or interest in the realities of a physicallydistinguished health status. They knew few persons

living with disabilities and gave little thought to thepossibility of a ‘‘disabled’’ or ‘‘limited’’ potential in theirown lives. To the extent they considered these issues, the

average respondent assumed people with physicaldifferences might live a less full if not an inherently lessvaluable life. Even among those who grew up with

physically challenged relatives there was little expecta-tion that they, too, might someday face a life withsimilar chronic deficits.Simply, these persons reported no basis for comparing

healthy and diseased states. Nor could any havepredicted accurately the choices they would make inthe face of a chronically limiting physical condition.

While none were certain that their earlier selves couldhave coped easily with their current life status, mostreported positive life quality aspects that were not

anticipated prior to injury or illness. While some of thesebenefits were personal } a sense of increased spiri-

tuality, for example } many reflected a deeper sense ofsocial and familial relation. Clearly, this challenges the

fourth axiom. Life quality is dependent on social andfamilial relations rather than solely on the basis ofphysical ability or disability. While this result was

anticipated by previous studies (Young & McNicoll,1998), those conclusions regarding the process ofadaptation are confirmed and extended by the currentstudy.

The assumption of personal autonomy as the drivingaxiom of medical-decision making is also challenged bythese responses. Participants described current lives

whose life quality is intimately bound up in theirconcern for and dependence on caregivers. This wasmade clear by responses to questions 2.6 and 2.7, for

example. In addition, comments added to the lastquestion section regarding home care and technologicassistance } ‘‘I don’t [need anything] but my [caregiver]

wife does,’’ for example } suggest a sense of relationbetween caregiver and care receiver that deserves furtherexploration. These results suggest, for example, thetestable hypothesis that persons living with chronic and

limiting conditions now make apparently independentlife decisions on the basis of caregiver needs. Even if thisis true it would not necessarily follow, however, that

those persons would want to cede at least some overtdecision-making responsibility to those caregivers. Thispossibility, once identified, can easily be explored,

however.While it is impossible to consider definitively issues

raised by personhood constructs (axiom 3), some ofthese responses do suggest directions for further

research. To the extent that people consistently rejectedsuicide before and after diagnosis or injury suggests aconstancy irrespective of physical condition. Were there

no continuous personhood, one might expect this tochange dramatically as the individual’s physical state isaltered. And yet, respondents clearly believe they have

changed and grown while adapting to their currentphysical conditions. They have found additional andunanticipated benefits in social relations, familial

associations, and spiritual considerations.A working assumption might be that while most

individuals retain a core of individualized, historicallygrounded perceptions and values that are relatively

constant, the ‘‘historical self’’ that does not precludecritical changes and adaptations. These may occurin response to both changes in physical condition }

and thus self-image } and the greater social contextin which those changes occur. The historical self,whose values are constant, serves as a guide but

not necessarily a restriction when a life’s context isaltered. Its assumptions and values may be radicallyaltered by circumstance. This is in accord with

qualitative studies of disability in which individuals saya part of them died so that the rest of their personality


might live in a physically restricted state (Koch, 1998b,chap. 3).

This explains, perhaps, the rationale behind thefrequency with which persons who live with chronicprogressive conditions may alter an AD written in

health. It similarly explains why some people withchronic and debilitating conditions } the humanimmunodeficiency virus, for example } may reportboth an improved life quality and a reluctance to trade

off any life years for ‘‘perfect health’’ (Tsevat, Sherman& McElwee, 1999). The experience of disability forceschanges in perception and values depending on a

range of accommodations. These are based on thepresence or absence of social and familial supportas well as the specific nature of the physical restriction.

If support exists } in the home, work place, andthe greater community } people may decide tocontinue with a restricted life for far longer than

might have earlier been anticipated. If howeversupport is absent, and life becomes restricted, accom-modations will be limited and life quality diminishedas a result. The degree to which individual perception is

or is not influenced by these or other factors }

education, for example } remains a subject for furtherexploration.

Conclusion

Prospective health planning instruments axiomati-cally assume individuals can predict accurately thechoices they would make in the event of a physically

limiting condition. To do so, however, assumes aknowledge basis and familiarity with different states ofdisability } an awareness of one’s own potential as aperson-with-differences } that among study respon-

dents was extremely rare. Respondents had littleexperience with physical disability and little interest in

issues surrounding a physically challenged life prior toinjury or diagnosis. That most respondents currently

report a strong life quality, despite their moderate tosevere physical limitations, apparently speaks not to a‘‘disability paradox’’ (Albrecht & Devlieger, 1998), but

to a process of social and familial adaptation whosebenefits were clearly unanticipated by respondents priorto injury or diagnosis. Thus the axiomatic assumptionthat life quality is largely or wholly based on physical

deviations from the norm was not supported by thiswork.Clearly, the small size of the sample employed in this

survey requires that the work be repeated and expandedbefore any definitive determination can be maderegarding these axioms. Similarly, the set of axioms

identified here as critical to proscriptive instrumentsdemands rigorous review by scholars and ethicistsinterested in these issues. That said, the importance of

the data returned } and the challenge it presents tocurrent approaches in health care planning } isunequivocal. To the extent proscriptive instruments donot adequately measure the reality of life quality in the

context of physical difference, methods of medicalplanning and allocation will need to be broadlyreconsidered.

Acknowledgements

The author gratefully acknowledges the suggestions ofpeer reviewers who reviewed an earlier draft of thispaper, and journal editor Prof. Mildred Blaxter, who

encouraged revisions based upon them. Also acknowl-edged here is the assistance of members of participatinggroups, and representatives of those groups including

Sarah and Ray Walker of the Independent Living group,Carol McBride of the ALS Society of BC, and May Ngof the BC Coalition of Persons With Disabilities.

Appendix. Questionnaire

Section I

This section asks you to remember your perception of limiting conditions prior to your illness or injury. At that time:

1.1. Did you have friends or relatives with similarly limiting disabilities?

1.2. Did you know people who used a wheelchair, walker, or other mobility aide?1.3. Did you know people with voice, vision, or other physical deficits?1.4. Did you ever consider the possibility that you might live with a physically restricting illness or injury?1.5. Did you take your physical mobility and general health for granted?

1.6. Did you think the lives of persons with physical limits were less full than those of normal persons?1.7. Did you think the lives of persons with physical limits were less valuable to society than those of persons

without such limits?

1.8. Before your injury or condition was diagnosed, would you have considered your current life worthy living?1.9. Before your diagnosis or injury, would you have been able to easily handle the daily reality of your current life?


1.10. Before your life style was restricted, did you ever fill out a living will or an advanced directive to limitmedical treatment in case of a life restricting condition?

1.11. If you were to complete a living will or advance directive today, would it be different from one completed

before the onset of your illness or injury?1.12. Before your life style became restricted, would you have been able to accept what your life is like today?1.13. Have you ever completed a ‘‘Do Not Resuscitate’’ order to limit future treatment?

1.14. Would you fill out a ‘‘Do Not resuscitate’’ order today to limit treatment in the case of a serious buttreatable condition?

Section II

Please compare your life before diagnosis or injury and today } then and now } in the following ways.

2.1. Do you spend more or less time with friends than you did ‘‘then’’ ?2.2. Do you spend more or less time with your family than you did ‘‘then’’ ?

2.3. Do you spend more or less time focused on business or professional concerns than you did ‘‘then’’ ?2.4. Do you spend more or less time with spiritual or religious concerns than you did ‘‘then’’?2.5. Do you consider your life today worth living?

2.6. Are there positive aspects to your life today that you would not have anticipated?2.7. If yes, please check one or more of the following areas to describe those areas:

___ Social ___ familial ___ spiritual ___ professional___ other ___ Don’t knowI wish to talk about this ___

2.8. If you could, would you end your life today?2.9. Were your physical condition to deteriorate in the future, would you at some point seriously consider

ending

your life?2.10. After your injury or original diagnosis, did you ever consider suicide?

Section III

This section is designed to help me understand something about your current physical condition and abilities.

3.1. Biographical informationWhat is your age?

___20–35 years of age___36–50 years of age___51–65 years of age

___66–80 years of age3.2. Educational level: Have you completed. . .

___High School

___University___A trade school program (plumbing, carpentry, etc.)___Graduate School (MA or a Ph.D.)___Other

3.3. At present are you:___not working ___working part time___working full-time ___self-employed at home

___ self-employed at an office ___ Other3.4. How long has it been since your current condition was diagnosed?

___less than one year ___one to five years

___five to ten years ___more than ten years3.5. What is the exact nature of your condition?

___ALS ___MS ___spinal injury (quadriplegia)___spinal injury (paraplegia) ___other


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Future states: the axioms underlying prospective, future-oriented, health planning instruments

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