Abstract
Some patients choose not to attend for health care despite health concerns or an opportunity for improved health. Social norms that privilege professional expertise, and good health, deem this choice irrational. However, this paper explores how a particular version of rational choice theory suggests ‘positive choices’ for such non-attendance. These are cognitive and subjectively rational decisions, which are made freely with potentially positive consequences and are not social problems if respect for personal autonomy trumps obligations to others. Specifically, Boudon's ‘cognitivist theory of action’ is used to conceptualise non-attendance as both a rational and irrational choice, from different perspectives. Because the perspective of non-attendees has been marginalised, the paper also suggests a typology of instrumental and non-instrumental ‘strong reasons’ for rational non-attendance. This may help groups such as professionals to understand and accept that non-attendance can be subjectively rational, without relinquishing their own perspective that it is irrational. Acceptance of the defensibility, if not the rightness, of the perspective of non-attendees is needed to show respect for non-attendees’ moral agency and to begin to repair relationships with these individuals, who may seek help from health professionals in the future.
This paper explores the potential of rational choice theory to cast light on the issue of non-attendance for health care. Some patients want to attend but are denied access by real or perceived external barriers to system entry (Beck, 1997; Lewis, 1977). In the absence of such barriers, other, competent patients (potential attendees or their surrogates) ‘freely’ choose not to attend in at least some circumstances. This is despite their awareness or suspicion of having a health need that may benefit from attendance, or their recognition of a possible opportunity to gain improved health. This paper challenges the dominant view of the irrationality of this choice by discussing a particular version of rational choice theory that elucidates the conditions under which individuals’ purposive decisions for non-attendance can be subjectively rational. This focus on individual action complements attempts to conceptualise the process of decision making through the process of decision making through social interaction (Pescosolido, 1992), and has relevance to those interested in theory, non-attendance for health care, or both.
Underpinning this interest in understanding different conceptions of the rationality of a choice not to attend (whether individuals make the choice acting alone or in social interaction) is my acceptance of two widely held assumptions: individuals deserve respect for their personhood and consequent moral agency, and tend to act rationally. Given these notions, I feel troubled that social norms regard choices not to attend for net health benefit as less rational than choices for attendance (Brock and Wartman, 1990; St Claire et al., 1996), and as problematic because of the health, social and economic costs that commonly result from non-attendance. From the perspective of non-attendees, the non-attendance can signify a ‘positive choice,’ meaning a cognitive and rational choice made freely with potentially positive consequences. For example, patients may eschew attendance for health care to protect their own identity from services they consider personally threatening (Coyle, 1999). The patients who choose non-attendance see as problematic not that choice per se but rather the ascription to them of irrational behaviour. This attribution is problematic, and antithetical to social interests, because it denies their personhood; marginalises them from the dominant discourse and (re)production of knowledge; leads professionals to attempt to change, rather than respond constructively to, their beliefs and decision not to attend for health care; and damages patient-professional relationships.
This paper seeks, therefore, to reconceptualise the rationality of non-attendance for health care. This aim reflects my perceived need to challenge social norms that privilege attendance for health care and health. I will align this perspective, for the sake of clarity, with professionals, and attempt to destabilise their stand-off with non-attendees. Specifically, I will attempt to: challenge the dominant discourse that treats freely chosen non-attendance as irrational in the face of health need; formulate a new perspective of rational non-attendance, which is acceptable to patients and professionals; help to mobilise intrinsic drivers among professionals for self-directed personal and social change; and support others to engage with health professionals and, if necessary, ‘push’ them toward a more respectful understanding of non-attendance for health care.
Against this backdrop, this paper will first critique rational choice theory and explain the normative belief that non-attendance is irrational in the face of health concerns or an opportunity for improved health. Next I will suggest that non-attendance can be legitimately viewed as rational (and not merely as irrational) within a weak version of rational choice theory that emphasises ‘strong reasons’ for attendance and non-attendance. Since the reasons for non-attendance are poorly understood, I will then suggest how to categorise them through a typology of instrumental and non-instrumental reasons for rational non-attendance. Last, I will elaborate on reasons why professionals may be expected to accept my approach.
Rational choice theory
Prominent in economics, rational choice theory underpins, for example, both the still-dominant Socio-Behavioural Model in the sociology of health care attendance (Andersen, 1995, 1968), and the influential Health Belief Model in psychology (Becker, 1974). Descriptions of rational choice theory have now been well rehearsed (see, for example, Boudon, 2002; Coleman, 1986; Goldthorpe, 1998). In brief, however, they encapsulate a family of models that share certain suppositions: namely, behaviours, including non-attendance for health care, are typically goal-oriented and – through reflective, voluntary and purposive reasoning – tend to be chosen for their future ability to yield aimed-for-benefits that exceed the costs.
In strongly rational, instrumentalist models, non-attendance behaviour is considered rational when it is the most efficient means in a particular situation to maximise individuals’ expected utilities. Though applied to individuals, these models emphasise that individual action (methodological individualism) can account for social situations including collective behaviour. Individuals’ values, goals and decisions are assumed to reflect ‘perfect information’ and express reasoned, complete and consistent preferences for future states.
Yet, strong versions of rational choice theory have several limitations. First, unrealistic assumptions are made about the individual's situation, cognitive abilities, and motivations. Experience shows that individuals commonly do not, for example, act to optimise their utility (Goldthorpe, 1998; Simon, 1957, 1982). Second, the strong requirement for instrumental rationality cannot adequately accommodate the influence, on behaviour, exerted by social norms (which are not outcome-related) (Elster, 1989) and by strong beliefs (such as principles that are morally important and subjectively rational – even if objectively mistaken) (Boudon, 2003). Third, the focus on rationality as a situational response devalues how individuals themselves cognitively and socially process beliefs and choices (Boudon, 2003; Lindenberg and Frey, 1993; Simon, 1957, 1982). Fourth, the assumption that individuals have complete and reliable information on the basis of which they form stable general preferences contradicts situations of change and uncertainty (Archer and Tritter, 2000). Fifth, rational choice theory is perhaps a special, although privileged, theory of action rather than a general one (Goldthorpe, 1998).
Such limitations have led to the development of more realist, subjective and procedural versions of rational choice theory. These include Simon's (1957, 1982) concept of ‘bounded rationality,’ which defines a procedure whereby individuals operate as ‘satisficers’ to make active choices that, in their judgment, are ‘good enough,’ rather than necessarily optimal, given actual constraints – such as information, time and money – under which they function. Other realist versions of rational choice theory include: (1) the ‘cognitivist theory of action,’ in which rational choices reflect strong beliefs that may be subjectively rational even if objectively mistaken (Boudon, 1996, 2003), and (2) formulations of rational choice theory that regard choices as situationally rational when they respond appropriately to people's goals and beliefs in their particular circumstances (Popper, 1994).
Non-attendance as irrational behaviour
Strongly rational, instrumental evaluations question the rationality of non-attendance. In general, professionals must accept the right of competent patients to ‘bodily self-determination’ and hence to choose non-attendance, regardless of whether they agree with this choice. However, when the beliefs of patients and professionals collide, professionals may contest the patient choice and attempt to change it (van Kleffens and van Leeuwen, 2005). Indeed, they may even have a responsibility to do so, for example through persuasion or – when the patient's competence is in question and risks serious harm to others – through recourse to the courts (Brock and Wartman, 1990).
By comparison, less overt and more contentious is the disproportionate influence of the professional perspective on how society defines rational patient behaviour. Patients are socialised into, and are expected to internalise, socially constructed norms of, or propensities for, health care attendance. These norms reflect the dominant – and ‘rational’ – culture of health that professionals have cultivated, including the quasi-inertial tendencies of the social structure inherited from more paternalistic times. The concept of ‘normative need’ illustrates this enduring influence of professionals. It describes what it is that ‘experts’ – namely, health professionals – believe regarding the capacity of patients to benefit from the health care under scrutiny (Bradshaw, 1972). These normative beliefs marginalise the patients who challenge the dominant discourse, and choose not to attend for health care. This relegation takes place even though the aims, values and preferences of health professionals are not necessarily ‘right’ for everyone, and whether choices are irrational or merely unusual is not always easy to determine, such that this judgment can be controversial.
The perspective of professionals is able to predominate because of their social power. In Foucaultian terms, professionals’ covert exercise of this domination – through relations of power that enable them to promote (as common knowledge) their own authority-based beliefs about health care attendance – trumps, diminishes and ultimately excludes the ‘deviant’ conception of rationality parented by discordant patients. From a structural-functionalist viewpoint, these effects of the use of power by professionals produce a form of social control that legitimates and reproduces their dominant values and expectations regarding the rationality of health care attendance and health (Parsons, 1951; Zola, 1972). A professional-centric discourse on health care attendance may, therefore, help to explain why rational choice theory deems that patients’ voluntary eschewal of health care is irrational. Other reasons, on which literatures in health care have been silent, may be that this patient group has been assumed to be much smaller, more elusive, and less tangible and tractable than the group not attending because of external barriers. Social norms will ultimately continue to recommend attendance in the face of clinical need, but it remains to be seen whether they and professionals can be helped to accept and tolerate patient choices for non-attendance which differ from their own.
Rational non-attendance as strong beliefs
I now wish to discuss how such a process of accommodation can take place. I will suggest an approach that professionals can be expected to accept because it does not require them to relinquish their own perspective that non-attendance is irrational. Instead it requests merely that they acknowledge that the opposing perspective is defensible. The approach that I will describe can also strengthen the social power and interests of professionals by avoiding conflict between professionals and non-attendees, who are likely to seek care in the future, while meeting moral imperatives to respect the dignity of all competent patients. I intend to elaborate on these reasons in the concluding section, but first I will discuss the approach to which I have been alluding.
This approach involves ‘bridging’ professionals’ perspective of the rationality of non-attendance with the perspective that non-attendees hold. This can be achieved by recognising that non-attendance – in common with treatment non-compliance (Donovan and Blake, 1992) – is not necessarily either rational or irrational. Instead it can be both – depending on the perspective taken. In this sense, voluntary choices not to attend and normative expectations to attend can each be rational, from their respective standpoints, at the same time for the same individual.
The bridging approach is made possible by grounding the rationality of non-attendance in what the contemporary French sociologist, Boudon (2003; Savulescu and Momeyer, 1997), has called the cognitivist theory of action; but which can be considered a particular way of theorising about rational choice. According to this theory (introduced briefly above), rational reasons are reasons that individuals perceive to be ‘strong’ – meaning defensible on the basis of plausible conjecture. Strong reasons are not necessarily of the ‘cost-benefit’ type because instrumental rationality is only one type of rationality and is problematic when expected utility maximisation is undefined in the context of distributed decision-making in social networks (Colman, 2003). Strong reasons that are not instrumentally valuable are the principles, such as fairness, that individuals believe are important, right or morally worthwhile in the cognitive context defined by constraining and enabling factors in their social environment. These subjectively rational beliefs are goal-oriented or ends-oriented, but since they exist independently of their consequences they can also be objectively mistaken.
In the debate about the use of rational choice theory, the cognitivist theory of action renders sociological issues, such as non-attendance, intelligible. Specifically, it provides an extended, more interpretative and particularistic model than traditional rational choice theory. It moves away from strong rationality requirements and, although it attaches more importance to understanding behaviour in situational terms than do, say, the versions suggested by Coleman or Simon, it abandons a (Popperian) preoccupation with the operation of social institutions and structures as external situational constraints on actions such as attendance. Instead it emphasises the strong, socially determined preferences and beliefs of individual subjects, locating their subjectively rational choices in their circumstances (situational rationality) and own psychological processes (procedural rationality).
The result is a soft relativist model that allows the rationality of non-attendance to vary between patients and professionals, acknowledging that each of these parties may be self-interested (as in hard-core rational choice) or other-focused (resolving the Hobbesian problem of how social life can be possible if actions are only self-interested). Van Kleffens and van Leeuwen (2005), for example, reported that ‘good’ (rational) reasons for refusing recommended oncological treatment were mainly value-oriented among cancer patients, but goal-oriented among their doctors. This finding echoes Weber's distinction between these types of rationality and places Boudon (and, say, Elster) closer to the ‘subjectivist’ methodological individualism of Weber than does the more ‘objectivist’ approach articulated by theorists such as Coleman or Popper.
Against this backdrop, non-attendance can be rational and irrational for at least four reasons, exposed by a deconstructionist reading (Derrida, 1978, 1982). The first reason is disagreement over the meaning of rationality, which helps to explain why no single perspective is necessarily the only rational one. Second, there is arguably no single truth; and even if there is, it might not be known, and so understandings of it can reasonably differ. Third, the linguistic opposition of the categories of rational and irrational is ‘fuzzy’: no clearly defined semantic boundaries exist between them (Labov, 1973). The categories graduate into each other in a transition zone defined by decisions whose strength of reasoning is ‘vague’ (out-of-focus), dynamic rather than fixed, and unstable. Fourth, the professional concept of rational behaviour is incomplete since, for example, it makes sense only through reference to other perspectives. Patients and professionals – or even the same individuals at different times and places – may pose and answer different questions from different value and preference positions. Thus, non-attendance for health care can reflect an individually-focused, dynamic and contested but, at the same time, still defensibly rational and irrational decision.
The possibility that non-attendance can be simultaneously rational and irrational has been neglected in the context of a challenge to rational choice theory itself, including its methodologically individualist underpinnings and sociological minimalism (Meadwell, 2002). This challenge has grown, in part because rational choice theory has led sociology to question its own disciplinary identity and resist ‘colonisation’ (Archer and Tritter, 2000). It is beyond the scope of this paper to debate that challenge. However, note that even proponents of rational choice theory, such as Elster, have devoted much effort to elucidating its limitations. And realist versions of rational choice theory, such as Boudon's cognitivist theory of action, help to avoid the most common criticisms. For example, Boudon circumvents unrealistic assumptions about the completeness of (objective) knowledge available to individuals, their cognitive capacities and preferences, and rationality being necessarily instrumental. It also uses a rich (thick) psychology to understand behaviour as a procedural and not merely a situational response. Therefore, in my application it has the potential both to promote respect for choices against attendance, rather than outright dismissal of them as deviant or defensive responses to distress, and to destabilise the ideological conception of attendance as a system of shared beliefs privileging professional expertise and values.
Typology of reasons for rational non-attendance
I should now like to draw on Boudon's version of rational choice theory to suggest a typology of strong reasons for non-attendance. This particular and exclusive focus on non-attendance as a potentially rational but dissenting choice by individual patients should not be interpreted to devalue other, strong reasons for attendance. Rather my aim is to meet an unmet need: give disinterested insight into the perspective of non-attendees, whose voice has been marginalised and denied effective representation by the ability of the normative belief systems (which professionals reproduce through their social power) to mask, trivialise or ignore it. Emphasising and loudening this voice begins the process of liberating it from such conditions.
Within the cognitivist theory of behaviour, the strong reasons that I shall discuss operate beyond individual health problems. The reasons are, by definition, subjectively rational – and hence defensible – rather than necessarily rational in objective terms or agreed with by me. They cluster into two groups. The first of these groups defines reasons that are instrumentally rational in supporting non-attendance behaviour whose benefits are reasoned to exceed the costs. The second group comprises reasons whose rationality does not depend on their consequences. Rather, in a given cognitive context, the reasons are perceived to be meaningful to the individual patients concerned. Relationships between the reasons in each group are considered when relevant to my stated aims. My thematic discussion of these groups resembles a Parsonian sociology (although, for Parsons, social values and norms, and social order, are central to understanding human action) that is concerned with categorisation and the development of schemata for understanding the rationality of human choices. The groups of reasons are discussed in turn, offering a counterpoint to well-rehearsed arguments in favour of attendance, and mapping a route to increased understanding of why patients sometimes rationally choose to forego health care attendance.
Instrumental reasons
Five strong sets of instrumental reasons for health care non-attendance will now be discussed: namely, precautionary principle; risk tolerance; priorities other than health; desire for patient control; and advantages of sickness. What unifies these different sets of reasons is that, consistent with traditional rational choice theory, each of the sets describes, in consequentialist terms, benefits of non-attendance that individual patients may perceive to exceed the personal costs.
Precautionary principle
Health policies increasingly cast patients as consumers of health care as a market commodity. Consumerist behaviour continues, however, to be challenged (Donaldson et al., 1991; Marshall and Romano, 2005). A common barrier to consumerist behaviour is low health literacy (Howard et al., 2005), and the concept of ‘patient expertise’ has also been questioned: patients can have experiential and embodied knowledge in the context of their lives, but, according to some authors (Chalkley and Malcolmson, 1998; Prior, 2003), generally are not experts on technical matters in health care. Despite these caveats, increasing numbers of patients (especially but not exclusively with relative socioeconomic advantage) have been enabled to question professional expectations for their health care attendance. This is because consumerism; improvements in public access to education; and advances in information technology, including especially the Internet (Elwyn and Edwards, 2001), have contributed to a narrowing of the gap between professional and patient knowledge of health care.
While reducing both professional authority over patients (deprofessionalisation) and professional control over key occupational prerogatives (proletarianisation) (Wolinsky, 1988), this convergence has helped to meet a fundamental aim of sociology: to release in society the freedom intrinsic to personhood – for example by loosening the shackles of dependency on health care attendance. Specifically, patients with new-found knowledge on health issues can now make informed demands for improved professional performance: comparatively few patients consciously select the best health professionals or explicitly insist on improved performance from the worst (Marshall and Romano, 2005), but they may ‘vote with their feet’ by choosing non-attendance in the absence of knowing that the latest technologies and newest health policies are clearly safe and effective.
This last behaviour signifies the ‘precautionary principle’ (Kopelman et al., 2004) according to which some patients eschew care out of ‘prudent foresight;’ they minimise health risks by emphasising safety. Aware that most health care carries known and sometimes unknown health risks, they reason that these risks exceed those associated with non-attendance in their situation. An example is care in support of intentional, long-term weight loss by patients who are overweight but otherwise healthy (Buetow and Docherty, 2005). Not only do limited data show beneficial effects of weight loss in such patients (Kassirer and Angell, 1998) but weight loss can harm their health. For certain conditions and patient subgroups, intentional weight loss may even increase long term mortality (Astrup, 2003).
This is not to devalue professional judgments on the need for care. Rather, my aim is to emphasise that a strong reason for non-attendance can be patients’ desire for health protection, occasioned by their increased awareness both of the nature of debates within health care and of professionals’ tolerance of complexity and, especially in primary health care, uncertainty. These last attributes have contributed to large, unintended variations in health care practice (McPherson, 1994), including professionals’ overuse, underuse and misuse of services (Chassin and Galvin, 1998). Moreover, even appropriate use can produce unintended side-effects (Illich, 1975); and all these outcomes may discourage patient visits.
As a topical example of potential overuse, current guidelines (such as the latest European guidelines on the prevention of cardiovascular disease in clinical practice (de Backer et al., 2003)) are introducing ever-lower thresholds for diagnosing high blood pressure and hypercholesterolemia, and treating these conditions through costly, lifelong interventions that offer little potential benefit to individuals at low risk levels (Westin and Heath, 2005). Such interventions can produce unnecessary anxiety in patients (Becker, 1993), leaving them confused and sceptical in the face of professional uncertainty over the relative merits of medicalisation.
Underpinning this uncertainty is the fact that health care, in common with life, can never be risk-free. Human beings are prone to error, and health care is based on the provisional, emergent and incomplete nature of much research evidence (Upshur, 2000). In this context, Naylor's (1995) observation that evidence-based medicine (EBM) ‘offers little help in the many grey zones of practice’ is no less relevant today than when it was made a decade ago. EBM has been slow to produce direct evidence not only of its own effectiveness (Haynes, 2002) but also of the efficacy of most safety practices. And experimental evidence is neither sufficient nor necessary for accepting the safety of practices that make sense, are based on ‘human factors principles’ (these compensate for failings in human cognition) and have been shown to be effective in other settings (Leape et al., 2002: 507). Patient confidence in the safety of personal health care can be undermined by such concerns as well as by a mounting expectation on professionals to act in the best interests of local populations (Buetow and Docherty, 2005).
Risk tolerance
While some patients act in a strongly risk averse manner, other patients’ behaviour is risk tolerant. The latter behaviour is defensibly rational because there are no non-arbitrary thresholds at which the risk of a certain behaviour, such as non-attendance, is ‘unacceptably high’ and incontrovertibly irrational. For example, if approximately 2,500 women are needed to receive a cervical cancer screen in order to prevent one death (Boomsma and van Lidth de Jeude, 2000), is non-attendance for a smear clearly irrational, considering also the other benefits, and the physical and psychological harms, associated with this screening? Since risk and safety are relative terms, any answer of ‘yes’ is surely a value judgment as to how patients ought to live. In addition, risk tolerance implies an optimistic life attitude that may be rational in avoiding distress and producing ‘eustress’ (positive stress). Even when patients’ beliefs prove to be objectively false, they might have been subjectively rational in the cognitive context of when these individuals made the decision not to attend for health care.
Priorities other than health
The risk of disease may be tolerable to some patients for yet another reason: namely, that this risk is not necessarily an important criterion defining the rationality of their behaviour, since non-attendance may offer highly valued non-health benefits that, by comparison, better define their reason for living. This is despite the fact that health care sanctifies health as ‘ideal’ and legitimates attendance and the structures sustaining it. To these ends, primary health care has come to focus on preventing, and not merely treating, disease and on improving patients’ experiences of health and healthy bodies.
These health priorities of health professionals are not always what patients want from attendance for health care. In particular, some patients do not want unsolicited lifestyle advice from a health professional, or knowledge about future biomedical risks of multifactorial disorders that are unrelated to their reasons for attendance (Getz et al., 2003; Skrabanek, 1994). Patients may even consider health relatively unimportant. Questioning the privileging of health over other aspects of their lives, they may value attendance for health care and health below other priorities (Lupton, 1998). Examples include the enjoyment and reduction in stress that smokers derive from tobacco; and smoking may help smokers function effectively at work or in social situations. From the perspective of smokers, these benefits outweigh health advantages that cessation programs offer (Lupton, 1998).
Also, many young people are less interested in their health than in minimising their differences from, and fitting in with, their peers (Buetow et al., 2003). Men tend to underuse formal health services for reasons that have been suggested to include their ‘traditional social role characteristics … [such as] a belief that seeking help is unacceptable’ (Tudiver and Talbot, 1999). And for some cultural groups with collectivistic cultures, such as Asian and Pacific Island peoples, high priorities include obligations to extended family and community members ahead of personal health (McLaughlin and Braun, 1998; Tukuitonga, 1999). It has been suggested that these priorities imply an irrational bias toward the present and near future (Brock and Wartman, 1990). However, this conclusion is controversial. It begs the question of whether it is irrational for patients to forego enjoyment in the real present by attending for health care that sprinkles, as a kind of motivational seasoning, liberal quantities of ‘fear’ on messages about an uncertain future hazard (Becker, 1993).
Desire for patient control
Even when professionals share decision-making with patients (Charles et al., 1997) or offer them the information they need to select the interventions that best reflect their own patient values (the informative or consumer model) (Emanuel and Emanuel, 1992), the balance of power tends to favour the professional (Goodyear-Smith and Buetow, 2001). Some patients might reason that this is problematic when the care they are asked to attend is unsolicited, intrudes ‘uninvitedly (and sometimes harmfully) into people's daily lives’ (Feinstein, 1996) and produces a ‘coercive healthism’ (Skrabanek, 1994). For instance, many men are advised to accept routine screening for prostate cancer even though the available tests are problematic and uncertainty exists over how best to clinically manage lower grade prostate cancers once detected. As a consequence, patients may assert their right and, through non-attendance, their preference to maximise their own ‘control’ over their health care. This becomes possible when patients feel no need to obtain, from professionals, legitimation and management of their illness as ‘sickness’ and are able to draw on lay referral systems for informal care (Friedson, 1960).
In these circumstances, non-attendance can avoid instrumentally the loss of personal control that can result from dependence on professionals, whose interests can compete with their own (Illich, 1975). It can also enhance patients’ autonomy by managing their uncertainty, first by escaping the professional power mediated by variations in, and thus unpredictable, clinical behaviour; and second, as part of a temporal sequence of attendance and non-attendance for health care, by making patients’ behaviour unpredictable enough to strengthen their own control over their health.
One form of personal control that patients may wish to protect relates to the information they are willing to receive. Although many patients want to be informed, others want little or no information (Maxwell, 1994). They may choose to ‘activate’ their right not to know, unless this risks serious harm to others (Andorno, 2004). Thus, non-attendance permits patients to avoid or postpone receiving a diagnosis and prognosis they do not want to hear. Patients are especially unlikely to want to accept that their illness is serious, chronic or socially stigmatised, as exemplified by mental health problems, like schizophrenia, and sexually transmitted diseases, in particular HIV/AIDs.
Professionals may feel a duty to tell patients the truth when they attend for health care in order to ensure these patients are informed and to expedite treatment. However, from a consequentialist perspective, communicating bad news may cause ‘such anguish for everyone concerned that it is sometimes accurate to say it does more harm than good’ (Graber, 1998). Not receiving bad news could postpone emotional distress and protect disavowal (‘healthy denial'). Likewise, patients might choose not to receive ‘curative’ treatments when they want palliative care that can enable them to find meaning in their condition (Brandstadter, 1992). In these situations, non-attendance that patients (and some professionals) consider inappropriate is not necessarily a maladaptive (emotion-focused) coping strategy. Instead, it is a cognitively rational approach to resisting care that appropriates, to medicine, areas of their lives once regarded as personal, and that limit personal, proactive coping.
In addition, patients may use non-attendance for health care to express personal control via an individualistic ethos that puts their own needs ahead of those of their community. From a social contractarian and objectivist perspective that people are, or should be, primarily self-interested, patients have a right to know that preventative health care confers large benefits to the community but little to most participating individual patients (Rose, 1992). Indeed interventions, such as immunisation, also involve small but active risks to individual patients. In putting community needs first, attendance for such care may devalue personal context and particularity, and weaken the principle of justice (as emphasised for example by Rousseau and Rawls respectively) by undermining the complexity and centrality of the patient.
Attendance may therefore be challenged, especially when the need for health care is moot; for example, some families might reasonably question the need for the second dose of the Measles, Mumps and Rubella vaccine. This is not to undervalue such preventative care, but rather to favour transparency in information-giving; argue against unsolicited advice and dependency; and protect the moral right of competent patients to make ‘informed’ choices, for themselves and their families, even when professionals might disagree with these choices.
Advantages of sickness
Most patients do everything they can to recover completely or improve their health, including attendance for health care. For Parsons (1951), patients are able to benefit from the ‘sick role’ if a health professional legitimates their illness as sickness, and they follow professional advice. This implies that non-attendees can derive no advantage (‘secondary gain') from being sick. However, excluding these individuals is problematic, both because barriers impede some patients from attendance and because Parsons’ rules might not apply to non-attending patients’ conscious or unconscious expectations of their own and others’ response to their illness situation (Berkanovic, 1972). For example, if patients’ strong social networks perceive organised health care negatively and these patients are attempting to manage their illness despite not attending for formal care, some of them may still seek secondary gains from being unwell. The gains they seek may include getting something they want, such as special attention. Patients may reason that if they are ill (enough), they may be exempted, without losing face, from unwanted role expectations or normal social responsibilities, where this exemption does not require professional sanctioning of their illness. The patients may also see some illnesses as means of avoiding blame and hurting, controlling or manipulating others (Williams, 1978).
Non-instrumental reasons
Other, strong personal reasons for non-attendance reflect individual patients’ expressive interests rather than their instrumental consideration of the consequences, as they perceive them, of acting to attend for health care or not. The strength of these reasons is grounded in principles meaningful to these patients. Two such reasons are now discussed: selflessness and living in accord with nature.
Selflessness
Traditional rational choice theory assumes that individuals are concerned mainly with maximising their own interests (egoism). A challenge to this assumption comes from the patients whose motivation is the opposite: they are selfless. They might not attend for care because of altruism – including a magnanimous, Aristotelian reluctance to share personal misfortune with others. They may want to protect other people, as far as possible, from the burden of their illness – especially loved ones and friends, but also, busy health professionals and even the health system. These patients may also want to ensure that scarce health care resources, such as professionals’ time and expertise, are allocated to patients with greater health needs than those they perceive themselves to have. They might further reason that becoming a burden makes equality difficult in adult relationships (Gunderson, 2004). Some philosophers, such as Callahan (1993), have thus suggested that a desire of some older people not to be a heavy burden can, under some conditions, justify refusal of life-saving health care. This desire may define a duty to suffer or even to die (Hardwig, 1997). A danger, however, is that prognosis in health care is seldom certain, and ‘altruism that provides a reason to refuse care also provides reasons for accepting care, even when it means being a burden’ (Gunderson, 2004).
Living in accord with nature
Some patients believe that to live ‘wisely’ as patients and human beings is to live in accord with nature – that is, as their deity or fate has intended or ordained. Their ‘stoic’ (or Taoist) perspective might not condone resort to health technologies in the face of clinical need. Jehova's Witnesses, for example, oppose blood transfusions on the basis of their understanding of divine will. Patients do not, of course, generally want to be sick, despite the potential advantages noted above. However, stoicism does not argue for sickness and is not reducible to fatalism. To the contrary, it values health and life, while seeking to understand actions that respond appropriately to human suffering (Stempsey, 2004). It disputes the assumption that illness and the label of ‘disease’ are deviant (Twaddle, 1973); observes that it is natural in life to experience some pain and suffering (Illich, 1975); and so requires ‘a correct assessment of the options in the face of the reality that we ultimately do not control our own fate’ (Stempsey, 2004).
This invites the conclusion that, in some situations, formal health care should not be used – for example to salvage life beyond its ‘natural limits’ or eke out an expected low quality of life. It also views sickness, suffering and self-care as having the potential to create personal challenges rather than threats. Though the principle of living in accord with nature is important in itself, it may produce opportunities for personal growth and self-regulatory goal management rather than risk management in adversity (benefit-finding) (Davis et al., 1998). Mechanisms for achieving these outcomes, which are not necessarily greater than the costs of foregoing health care, include: leading the individual patients to think carefully about their own mortality, their spiritual beliefs and the meaning of their life; levelling and humbling these people; and enabling them to empathise with sick others (Cloud, 2001).
Conclusion
This paper has challenged the limited definition of rationality mobilised by social norms that privilege professional expertise, and good health. These norms treat as irrational the freely made choices for non-attendance in the face of health need. However, I have argued that non-attendance for health care that is clinically indicated, in the absence of external barriers to attendance, can be both rational and irrational, depending on the perspective taken. This argument fits with Boudon's cognitivist version of rational choice theory, wherein the reasons for behaviour such as non-attendance can be subjectively rational, even if objectively mistaken, and not necessarily a social problem if personal autonomy trumps obligations to others. Because the perspective of non-attendees has been marginalised, I suggested a typology of instrumental and non-instrumental reasons for rational non-attendance.
Is it naïve to expect professionals, given their embedded social power and hegemony, to relinquish their belief that non-attendance for health care is irrational? Yes, but that is not what I ask of them. Instead, I request only that they respect patients’ capacity and right to entertain strong beliefs which differ from their own, which may be defensible on account of their subjective rationality, and which should not be berated or belittled in the absence of obvious external barriers.
However, this does not explain whence this respect should come. Increased awareness and understanding of non-attendees’ perspective may help to occasion respect for their beliefs; yet, this is probably insufficient because professionals believe they already know the truth about what is rational and what is not. Therefore, by way of elaborating on arguments made above, consideration is needed of at least two other sets of reasons for reasonably expecting professionals to accept choices for non-attendance with which they happen to disagree. First, respect is owed to the subjective rationality of all competent patients, whether they choose to attend for health care or not, and hence to their capacity for, and moral right to exercise, personal autonomy. To argue otherwise is to rob these lay individuals of their personhood and the human dignity that is fundamental to any flourishing democracy. Indeed, their autonomy is also important because only they can adequately reflect on, and face, the personal consequences of their choices and the care they receive or not. Second, demonstrating respect for the rationality of non-attendance could enable professionals to strengthen their relationships with the non-attendees who will attend for some health care in the future. Professionals have an interest therefore in avoiding conflict by moving toward the kind of middle ground made possible by Boudon's approach that involves no loss of face for anyone.
Accordingly, this approach may advance debates about non-attendance by improving individuals’ understanding of different conceptions of the rationality of the choice not to attend. It may also help to mobilise intrinsic drivers among professionals for personal and social change in how they respond to non-attendance. To the extent that such change among professionals does not take place or is slow is forthcoming, the approach may also, however, enable lay individuals – and the consumer movement – to drive forward the evolution of new social norms that can ‘push’ professionals toward a more respectful understanding of non-attendance. The analysis that I have offered also has some methodological implications. Its application to non-attendance for health care lends general support to Boudon's form of rational choice, and indicates its potential to redefine the ‘irrationality’ of other common, voluntary, but normatively expected behaviours (such as voting) that lack instrumental value at an individual level.
University of Auckland
Footnotes
Acknowledgements
This paper was written during the tenure of a Senior Health Research Fellowship funded by ProCare Health Limited. I thank the anonymous reviewers and the Editor for their helpful guidance in the preparation of this manuscript.