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Self-management of asthma is a complicated activity, perhaps more demanding for asthma than for any other chronic illness. People with asthma are faced with an illness whose causes and fluctuations are poorly understood (witness the pages of this journal), to be controlled with an often mysterious collection of inhalers. Our increasingly high expectations of patients’ abilities to self-care are fuelled by trials in selected populations1 and politicians with visions of reduced healthcare costs.2,3 The realities of asthma self-management are often scepticism and low uptake.4 The consultation remains the most important opportunity for helping patients to develop the ability to manage their asthma. Rightly, the consultation continues to be subject to a range of critical perspectives.
Social scientists offer a number of deficiencies that hinder success in promoting self-care: the infrequency with which doctors seek and patients air fears about medication and side effects, lack of opportunity for patient involvement in treatment decisions, lack of recognition of the coexistence of lay and popular remedies. We stand accused of an enthusiasm for authoritarian, positivist, illness centred medicine.5,6–10 Ethicists show how clinicians can undermine trust by failing to discuss how rationing affects their prescribing or referral decisions;11 any patient who says their doctor “prescribes the cheapest of the cheap medicines”12 is unlikely to value advice. Educationalists and psychologists argue that teaching knowledge about asthma is inadequate and that the key skills needed are goal setting, problem solving, and development of confidence—a view backed by empirical research in the USA.13–15
These perspectives can be grouped together under the general heading of a failure to involve patients sufficiently in their care. Patient centred care is not about destructive consumerisation and deprofessionalisation,5,16 but acknowledgment of the complementary expertise and knowledge that patients and professionals bring to the consultation.17 It incorporates the notion of promoting shared decision making in consultations.18,19 It is an explicit goal of healthcare reform.2 From an ethical standpoint, there is no doubt that patients should exercise autonomy and control over their care. However, while reviews of interventions suggest the goals of increased patient involvement, satisfaction and adherence are often met, improved health and reduced costs have been more elusive.20 Providing convincing evidence of these benefits remains a most important challenge.
In this issue of Thorax Caress and colleagues bring a useful contribution to this debate.21 In a study of asthmatic subjects drawn from primary and secondary care they show that most want to be more involved in decisions about their asthma care. They show that few people live at the extremes of wanting to make decisions without advice or having them made for them. The study is strengthened by combining qualitative data from interviews with patients to illuminate their positions on decision making.
Very similar findings were reported in hypertensive patients in the USA by Strull and colleagues 20 years ago, which suggests that this is a persistent and generalisable finding.22 Using a similar questionnaire design, patients reported higher preferences for involvement than they experienced across five categories. A comparison suggests a trend away from paternalism with fewer patients preferring a fully passive role in 2004 compared with 1984 (14% v 47%). It is difficult to predict individual preferences, but previous work shows that the desire for involvement broadly relates to condition, context, and demographic factors. For instance, patients wish for greater involvement in decisions for benign versus malignant breast disease, for routine versus emergency care,23 and for emotional compared with physical problems.19,23–25 In general, younger, more educated people prefer greater involvement.
So what remains concerning patient involvement and respiratory care? Research priorities are to find ways to enhance involvement of patients in consultations (particularly where care is increasingly driven by data collection and contract targets), and then to evaluate these in trials, testing their effects on health status and health care use. Promising work in this area needs to be tested in settings outside the USA.13,15 People with asthma from minority ethnic groups have poorer outcomes for asthma and are rarely involved in treatment decisions, even when language barriers are absent.26 Interventions may be of particular benefit in such groups. Lay-led education programmes for people with chronic disease are becoming integral to modern health care, but with little evaluation.3 We need to find out how effective these are in promoting more effective consultations and better health, and whether integration with more traditional professionally led education creates benefits or new problems.
Patients were asking for more involvement in 1984 and continue to do so 20 years later. Our response might improve the health of people with asthma.
The sociologist Talcott Parsons wrote in 1951:
“By the same institutional definition the sick person is not, of course, competent to help himself, or what he can do is, except for trivial illness, not adequate. But in our culture there is a special definition of the kind of help he needs, namely, professional, technically competent help. The nature of this help imposes a further disability or handicap upon him. He is not only generally not in a position to do what needs to be done, but does not ‘know’ what needs to be done or how to do it. It is not merely that he, being bedridden, cannot go down to the drug store to get what is needed, but that he would, even if well, not be qualified to do what is needed and to judge what needs to be done.”27