Attitudes toward patient expertise in chronic illness

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Abstract

Although it has become an accepted standard to acknowledge the patient as a full partner in health care decisions, replacing traditional authoritative relationships with those based on an emancipatory model, the experiences of persons living with chronic illness confirm that this paradigm shift is not yet apparent in many health care relationships. In this paper, the authors present a qualitative secondary analysis of combined data sets from their research into chronic illness experience with two quite different chronic diseases — Type I Diabetes (a socially legitimized chronic disease) and Environmental Sensitivities (a disease which is currently treated with considerable scepticism). Comparing the experiences of individuals with diseases that are quite differently socially constructed, it becomes possible to detect common underlying health professional values and attitudes that powerfully influence the experience of living with and negotiating health care for a chronic illness. In the discussion of findings from this study, the authors examine the implications of the spiral of behaviors that fuels mutual alienation in chronic illness care relationships if professionals are unable to value patient expertise.

Introduction

The traditional notion of health care relationships is founded upon three primary assumptive foundations. These are: that the professional is the expert, that the health care system is the legitimate gatekeeper for socially supported health care services, and that the ideal patient1 is both compliant and self-reliant. However, as has been argued by several theorists in recent years, the situation of chronic illness differs markedly from that of acute illness in matters of particular relevance to health care relationships (Bury, 1988, De Ridder et al., 1997; Monks, 1995, Robinson, 1988, Thorne, 1993, Wellard, 1998). Chronic illness is inevitably ongoing in nature rather than merely episodic. When an illness is chronic, the medical system has inherently failed in its socially ascribed promise to cure disease. The quality of life that ensues for the patient depends heavily on that individual’s development of self-care and decision-making skills. And finally, for many chronic illnesses, quality of life is also contingent on the ability to access appropriate supportive and health care services. Thus, chronic illness creates a special set of circumstances within which patients and health care professionals interact.

The discrepancy between the general assumptions underlying health care relationships and the realities of chronic illness creates several important contradictions. The first is that, as the illness progresses, the professional’s relative expertise is normally reduced below that of most patients (Brown and Piper, 1995). While the professional may well know the patterns of the disease in a general sense, the individual almost always understands his or her own particular case in an infinitely more sophisticated manner (Paterson and Sloan, 1994). A second contradiction is that clinical decision-making within western biomedical care systems tends to be oriented toward immediate efficiencies, moving the patient through the office and obtaining the greatest number of service interactions possible within the confines of the service. In contrast, individuals with chronic illness tend to be more typically oriented toward long-range outcomes, including using health care services in the short range for the ultimate purpose of reducing their need for such services over the longer term. A third contradiction that arises in the chronic illness context is that the two idealized qualities of compliance and self-reliance become mutually exclusive (Thorne, 1990).

Because it creates contradictions within the usual understanding of health care relationships, chronic illness care is conducted in a rather interesting social dynamic. While expert self-care decision making in chronic illness requires a good working knowledge of the relevant medical or pharmaceutical services, it is also dependent on the individual’s capacity to fine tune the available resources to a unique set of circumstances (Ternulf Nyhlin, 1990). When they enter the arena of negotiating for the health care services they require, individuals with chronic illness are inherently thrust into complex health care relationships in which the “good will” of the professional is balanced against the “perceived best interests” of the patient. Although theorists in various domains of chronic illness care have recognized this paradox, the current situation is characterized by insufficient knowledge and inadequate mechanisms by which to convince the majority of health professionals that care for chronic illness is an inherently different social enterprise than is care for acute or episodic illness. “Soft” variables, such as health care relationships, are therefore poorly understood and rarely subjected to rigorous and critical investigation (Simpson et al., 1991, Stewart, 1995).

In this paper, the issue of attitudes underlying health care relationships in chronic illness will be examined in some depth from the perspective of individuals experienced in negotiating health care for a chronic health condition. A secondary analysis of data sets generated in two distinct qualitative investigations creates the context in which a textual dialogue between two disease conditions is possible (Tesch, 1987). Insulin-Dependent Diabetes Mellitus (IDDM), represents an illness exemplar in which the biological basis of the disease is well established and the disease is not understood to imply threats to competence. In contrast, Environmental Sensitivities (ES), represents a paradigm case in which there is not yet any widespread consensus as to a biological basis for the illness. Also referred to as Environmental Illness and Multiple Chemical Sensitivities in the literature, this syndrome of general immune system breakdown has also been linked with such conditions as Chronic Fatigue Syndrome and Fibromyalgia. Because such conditions have most commonly been reported in populations of young, professional women, and have not been scientifically linked to specific causal factors, they tend to carry the stigma of “psychosomatic” conditions (Millar and Millar, 1995). Thus, these two cases represent extreme opposite positions on the theoretical axis of whether the symptoms reported by the patient are likely to be considered founded or unfounded. Comparison of findings related to these paradigm cases creates the conditions under which thematic analysis can reveal patterns indicative of common attitudes attributed to health care professionals as they are manifest across a spectrum of chronic illness conditions.

Section snippets

Methodological approaches

The current study represents a qualitative secondary analysis (Thorne, 1994, Thorne, 1998) of two data bases generated for the purpose of developing insider experiential knowledge in relation to a particular chronic illness condition. The Diabetes study was conducted in Canada by two of the co-authors, and involved intensive interview and “think aloud” decision-making recordings over the course of a year for 22 individuals who had longstanding diabetes and had been nominated as experts in

Findings

Cross comparison of the two data sets revealed patterns within health care relationships that transcended the disease context, the cultural and linguistic system, and the setting for health care. While many participants also identified individual exceptions, the general pattern of health care interactions described by all participants was characterized by a pervasive attitude of disbelief in their competence to make decisions on their own behalf. This attitude created a complex interactional

Discussion

The examples articulated by Swedish women with ES and by Canadian individuals with IDDM represent manifestations of health care attitudes that transcend logic, science, and our normal expectations of practice. Comparison of the circumstances under which these same attitudes appear in health care for both IDDM and ES makes it possible to deconstruct and reframe some of our usual rationalizations about why professionals behave in the way that they do in chronic illness care. Further, this

Conclusion

Two distinct configurations of the chronic illness health care relationship serve as exemplars to help us tease out common ideological positions into which health care professionals seem to become entrenched. Data deriving from studies of the subjective experience of those with first hand experience with IDDM and ES makes it apparent that counterproductive attitudes remain conspicuous throughout the health care system.

While there are certainly exceptions (and patients in our studies are quick

Acknowledgements

Dr Ternulf Nyhlin’s co-investigators in this research included Karin Lindh, M.D., Department of Occupational and Environmental Medicine, Umeå University; Monica Lindgren, M.D., Burträsk Health Centre, Västerbotten County, Sweden; and Lena Carlén Mårell, Department of Oral Biology, Dental School, Umeå University. Their research was supported by the Swedish Foundation for Health Care Sciences and Allergy Research. For their study, Drs Paterson and Thorne acknowledge the support of the British

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