Angela Coulter & Ray Fitzpatrick. Handbook of Social Studies in Health and Medicine. Editor: Gary L Albrecht, Ray Fitzpatrick, Susan C Scrimshaw. Sage Publications, 2000.
This chapter is concerned with patients’ perspectives regarding their health care. Initially, these perspectives were highlighted by a substantial body of research examining patients’ satisfaction with the care they received. A number of common themes emerged indicating, for example, universal problems arising from health professionals’ failures to communicate effectively with their patients. Research into patient satisfaction, whilst drawing attention to important concerns of patients, has given patients only a limited and passive role in influencing health care. The case is therefore examined for involving patients more actively in decisions about their care. The chapter concludes by speculating about future trends and dilemmas for health care systems arising from increased patient involvement.
Origins of Emphasis upon Patient Satisfaction
Pressures to pay greater attention to the issue of patient satisfaction have come from many sources and have varied in emphasis from one health-care system to another at different points in time. It is customary to identify the origins of concerns about the patient’s views with the growth of consumerism, particularly in the United States in the 1960s. Most strikingly, feminism began to challenge medical professional values and forms of care, whilst various cultural critiques questioned more fundamentally the claims to expertise of the medical profession. Consumerism provided a diffuse range of challenges to the dominant medical model, although analysts at the time held that lay views were invariably coopted by more powerful professional and organizational interests (Alford 1975).
Other more specific reasons why patient satisfaction became an important issue can be identified. First, evidence began to accumulate from the 1960s that patients dissatisfied with their care were less likely to comply with advice and to re-attend (Korsch et al. 1968). Poor communication skills of health professionals were identified as the main reason for such problems. It was possible to show substantial benefits in terms of patient satisfaction from relatively modest efforts to improve communication skills by training (Ley 1983). Second, was the growing application of social science methods to research, both in the clinical context of health care, and also in the use of social survey methodology to obtain the community’s views about health care (Davies and Ware 1988). Social research provided an increasingly powerful means of relating the views of patients to specific aspects of their encounters with health care and views of communities about varying types of organization for health-care delivery.
A third specific impetus serving to highlight patient satisfaction was marketing. From the 1970s to date, particularly in the competitive arena of health care in the United States, it was increasingly recognized that patient satisfaction was an essential element in health services. As evidence increased that patients expressing dissatisfaction in surveys were subsequently more likely to change health-care provider, so it became of growing importance for hospitals, health maintenance organizations, and other large providers to monitor patients’ views as a way to maintain or improve levels of satisfaction (Weiss and Senf 1990).
The fourth and most influential factor impelling greater attention to patient satisfaction has been increased external regulation of health services. In both Europe and North America, both public and private bodies funding health care required more evidence of the quality of services provided. Systematic evidence via surveys of public and users’ views came to be considered a vital source of evidence regarding quality (Pollitt 1988).
Lessons from Patient Satisfaction Research
Several consistent trends can be detected from the extensive body of evidence now accumulated regarding factors influencing patient satisfaction. In both North American and European health-care systems, patients are critical of poor communication from health professionals. At the simplest level, such criticism focuses on problems of limited or inadequate information. In a United States nationwide, interview-based survey of more than 6000 patients recently discharged from hospital, the most common complaint (45 per cent) was that they had not been told about the daily routines of the hospital (Cleary et al. 1991). The survey also found 32 per cent critical because they had not been told from whom to ask for help if it was needed during their hospital stay. Twenty four per cent of patients were not told about side effects of medicines in ways they could understand, and the same percentage of patients were not given information about resuming normal activities after discharge.
A modified version of the US questionnaire was used in a telephone survey of a random sample of more than 4500 Canadians recently discharged from hospital (Charles et al. 1994). Not being told about daily routines of the hospital again emerged as the most commonly reported problem (41 per cent of respondents). As in the US survey, many problems arose from poor communication about side effects of medication and failures to disclose a variety of simple, but important, matters of concern to patients after discharge from hospital. Another survey conducted using a modified version of the US questionnaire polled more than 5000 patients in England after they had been discharged from National Health Service (NHS) hospitals (Bruster et al. 1994). The same pattern of problems was reported with difficulties of communication dominating patients’ concerns. British patients were even more critical of communication than their North American counterparts. In relation to discharge, 44 per cent reported having no discussion with a doctor about discharge; 62 per cent were not told when they should resume normal activities.
International comparative evidence confirms that communication of information is just as important a determinant of patient satisfaction in primary care as it is in hospital medicine (Calnan et al. 1994). Evidence, therefore, consistently documents failures to convey information to patients in a satisfactory way across types of health-care systems. However, communication in relation to health care is a broader and more complex set of processes than simply the transmission of information. Patients also express widespread dissatisfaction that health professionals fail to allow them to report their concerns fully and in their own terms, do not take full histories of the presenting problem, do not convey reassurance, and do not provide appropriate advice. Crucially, patients also feel that they are not encouraged to share decision making with the doctor.
Whilst such problems have been so widely observed that they may be considered inherent in the provision of modern health care, research has succeeded in demonstrating that communication skills can be improved as judged either by independent observers or from evidence of patient satisfaction. Improvement may be brought about by conventional education training, by use of appropriate hardware and software to facilitate communication of complex information, and indeed by improving the skills and confidence of patients in dealing with health professionals (Fulford et al. 1996).
As important as communication, and often difficult to disentangle from communication processes, are a diverse range of health professionals’ behaviours that influence patient satisfaction, variously referred to as interpersonal skills, rapport, and the ability to instil trust, to demonstrate a sense of caring, and to treat the patient as an individual. The large national surveys referred to above again illustrate the scale of the problem. In the US survey, 20 per cent of all patients felt that hospital staff did not go out of their way to meet their needs as a patient. Thirty nine per cent of patients did not have a relationship of trust with any hospital staff other than the doctor in charge of their care. In the Canadian survey, 12 per cent of all patients experienced the doctors often or sometimes talking in front of the patient as if she was not there.
To some extent impersonal care and poor rapport may be considered difficult to avoid features of relatively brief stays in hospital care. In settings such as primary care where some continuity of contact between patients and their health professionals is more likely, problems in the relationship between parties can have a more deleterious effect on patient satisfaction. Calnan et al. (1994) found from their study of patient satisfaction with primary care in England, Greece, Russia, and Yugoslavia that interpersonal relationships were a major source of dissatisfaction. For example, in each country at least a quarter of patients said their general practitioner did not take their problems seriously enough, and almost a third felt unable to talk to their doctor about personal problems.
From extensive evidence of Israeli primary care, Ben Sira has argued that what he terms the affective behaviour of the doctor toward the patient, indicated by patients’ perceptions of being given sufficient time, interest, and attention by their doctor, is the primary determinant of overall satisfaction with their primary care (Sira 1980). Indeed according to such analyses, the patient relies almost entirely on evidence of affective and interpersonal skills to form judgements of health professionals’ technical competence that he is otherwise unable to evaluate.
Patients’ views have also consistently underlined limitations of continuity, access, and convenience that are increasingly associated with bureaucratic forms of managed care. In British and Norwegian studies, patients registered in primary care practices with no personal doctor or continuity of care were more dissatisfied with overall quality of care (Hjortdahl and Laerum 1992; Baker 1996). In the United States, various studies have shown that patient satisfaction with access and continuity is lower in forms of managed care, such as health maintenance organizations. In the large Medical Outcomes Study of more than 17000 patients, office waits and difficulties arising from office location gave rise to the highest levels of dissatisfaction across dimensions examined (Rubin et al. 1993). Most importantly, in this study a simple, single-item rating by the patient of their last visit to their doctor was a highly significant predictor of the patient leaving their health-care provider within 6 months. Many basic problems in patients’ experiences of health-care can be traced to some aspect of health-care systems that, increasingly compelled to compete in terms of efficiency, resort to impersonal and routinized forms of care.
Critiques of Patient Satisfaction
Despite the substantial body of evidence produced by research into patient satisfaction, work in this field is frequently criticized for failing fully to capture the patient’s perspective with regard to health care.
One line of criticism has been that patterns of views about health care obtained in survey research reflect normative values surrounding health care. Patients are reluctant to criticize their health care, at least in part because they risk appearing ungrateful or unappreciative (Fitzpatrick and Hopkins 1983). This is particularly seen as a problem in surveys of patients’ views in which respondents are asked fairly simplistic standardized questions about their views regarding aspects of health care experience with minimal opportunity to go beyond basic levels of ‘satisfaction’ or ‘dissatisfaction.’ A variant of this critique argues that patient satisfaction research is substantially flawed because of its reliance on insensitive methods of survey research to produce artificially inflated rates of positive satisfaction (Williams 1994). In contrast, it is argued that in-depth qualitative methods are necessary to obtain more valid evidence.
A related criticism is that the evidence obtained via standardized surveys is skewed towards favourable views by the majority of respondents, with the result that uniformly positive data do not permit investigators, managers, and planners to identify sources of poor or substandard care (Carr-Hill 1992). This is especially the case when the variation that is obtained by such methods can be substantially related to patients’ demographic characteristics (Fitzpatrick 1997). Thus, older respondents report more positive views about their health care. To the extent that such favourable views are due to diminished expectations, normative values or different response sets in relation to attitudinal questionnaires, the use of information about patients’ views to manage and plan patterns of services may be undermined.
At the heart of many critiques of patient satisfaction research is the view that it has given patients only a marginal role in relation to their own health care. To be consulted as a respondent in a survey is to have a very vicarious method of providing feedback to health professionals about the value and appropriateness of care received. The sense of limited involvement would be greater if there were greater awareness of the modest impact such evidence often has on decisions about future provision. More obviously, it is a form of involving patients that can only operate at an aggregate level of feedback to the health-care system as a whole. The health-care system may be expected to shift its pattern of care in the light of accumulating evidence from surveys, but it is inconceivable that individual patients will normally directly benefit by providing their views about care. As a response to pressures towards consumerism, the extensive investment in surveying patients’ views in recent years is a very conservative and limited step.
Patients and the Content of their Health Care
Whilst the patient’s viewpoint has received increased attention as a result of patient satisfaction research, it can reasonably be argued to amount to a very limited level of involvement of the patient overall. The most striking evidence of this conservatism, in considering patients’ concerns with regard to health care, is to be found in the inability to consider patients’ views directly about the content of their health care. Patients are less likely to be asked about the value to them of the treatment they receive than almost any other aspect of their experience of health care. For example, in Hall and Dornan’s (1988) meta-analysis of published studies of patient satisfaction, only 6 per cent of studies elicited patients’ views about the outcomes of their health care, whereas 65 per cent included items on humaneness and interpersonal relations. Wensing et al. (1994) came to a similar conclusion in their meta-analysis of studies of patients’ views regarding primary care; 8 per cent of studies examined any aspect of patients’ views regarding effectiveness or outcomes of care, compared with, for example, 65 per cent including assessment of views regarding humaneness, and 48 per cent regarding informativeness. Cleary and McNeil (1988) also note the relative neglect of patients’ views about the impact of care on outcomes. They warn that the impression might be gained from the literature on patient satisfaction that health outcomes are actually a secondary or minor concern on the part of patients compared with the need to be treated with courtesy and humanity. However, this apparent pattern may be more an artefact of the tendency of survey research to focus on particular issues such as the humanity of health professionals and neglect areas such as perceptions of outcomes. More generally, the limited attention to patients’ views about the content of their care reflects a broader perception of patients as passively and uncritically accepting in their judgements of these areas.
There are several reasons for the neglect of patients’ views about the content of their care. First, much of the organizational and political thrust behind involving patients in satisfaction research has come from health service management (Pollitt 1987). This methodology has been seen as a potential form of leverage by management to improve the quality of services. Systematic evidence can be gathered to identify areas of weakness in the performance of services and to monitor efforts made to improve them over time. However, whilst it has been widely considered appropriate that health service management should examine issues such as accessibility, waiting times, and the courtesy shown by staff, there have been clear limits to the domains of health care into which management has felt entitled to enquire. Questions about the content of health and value of treatments received have been treated as an infringement into professional concerns. Whilst health service managers may properly examine the acceptability of ‘hotel services,’ administrative and interpersonal aspects of health services, obtaining views on medical treatments represents too blunt a challenge to medical dominance. It may also be argued that health service management has mainly chosen to elicit patients’ views on those aspects of the quality of services over which managers thought they might have some influence; matters even remotely concerned with clinical judgement have not, to a large extent, become open to managerial intervention.
More generally, it has only recently been accepted by health services that patients can provide reliable judgements about their experiences of health and health care. Slowly, evidence has accumulated to indicate that patients have more understanding of medical knowledge than expected by health professionals (Segall and Roberts 1980). They are capable of making sensible judgements about aspects of the technical quality. Patients’ views can be expressed in ways that are highly reproducible and have good construct validity when examined in relation to other evidence of the quality of services. In some circumstances, such as the experience of chronic illness, patients may come to be as knowledgeable about their illness and its treatment as their doctor. However, the implications of the ‘patient as expert’ have still to be fully recognized.
Perhaps the greatest barriers to overcome in extending patients’ involvement in the evaluation of their care has been conceptual. At one extreme, some have viewed the patient as unable to comment sensibly on much at all in relation to health care received other than purely affective behaviour of health professionals. At the other extreme, it is possible to exaggerate the selfconfidence and competence of patients in relation to health and illness. Conceptual confusion is only increased by conflating all aspects of the content of health care into the broad category of ‘the technical’ in the way that some medical sociologists have preferred. Patients may often have only limited capacity to judge the appropriateness to their personal health problems of specific medical interventions, for example, whether a particular drug is likely to be appropriate to, and effective in relation to, their presenting problems. These are the core technical skills of the medical profession in relation to diagnosis and selection of candidate treatments. It is clear that patients, nevertheless, remain uniquely placed to make other relevant judgements about such decisions, particularly regarding two fundamentally important issues: (1) their concerns and priorities in relation to presenting problems, and (2) their personal perceptions of the costs and benefits of alternative interventions to improve the problem.
Thus, patients alone can determine and describe their concerns in relation to presenting problems. For example, among patients presenting to neurological clinics with headache, patients varied enormously in the extent their concerns. Some patients were primarily concerned about possible serious illness; other were seeking symptomatic relief; while others sought lifestyle advice about how to prevent recurrent headaches or simply wanted to understand more about the meaning of their symptoms (Fitzpatrick and Hopkins 1988). History-taking that focused on differential diagnosis alone did not enable neurologists to identify patients’ main concerns. Failure to address patients’ main concerns resulted in patients feeling disappointed with their specialist’s care and less likely to adhere to prescribed treatments, resulting in poorer symptomatic improvement over the following year.
Similarly, in many instances patients alone can make complex judgements about the severity of their health problems and their readiness to undergo risk, discomfort, or other costs from interventions to address their problems. They may also need to make complex judgements to ‘trade-off issues of their survival gained at cost to their quality of life. There are many circumstances where the patient is too ill or too cognitively impaired to participate in determining his or her preferences. A minority of patients also has a strong preference to hand over responsibility to health professionals for such decisions. Nevertheless, it is increasingly clear that the sphere of patients’ competence to judge matters in relation to illness is extensive. Our failure has been to confuse and conflate that sphere with the distinct but related role of the doctor to inform and explain from the point of view of epidemiological and clinical evidence; to advise about the options and their probabilities in ways that respond to the patient’s concerns and preferences.
The Need to Involve Patients More Directly
As we have seen, the measurement of patient satisfaction has become an important component in the evaluation of health-care interventions and in monitoring the quality of service delivery. However, patient satisfaction is essentially a passive concept. It acknowledges the legitimacy of patients’ views on the process and outcomes of care, but says little about their role in decision making. A focus on satisfaction after the event leaves the decision to instigate a particular form of care or treatment unchallenged.
The notion that doctors’ decisions may need to be challenged stems from studies of variations in practice patterns. The realization that there are widespread variations in clinical practice, indicative of the fact that doctors disagree among themselves about the appropriate use of particular treatments, has underlined the weakness of the scientific basis of much medical care and heightened awareness that doctors’ values and beliefs play a major part in influencing clinical decisions (Andersen and Mooney 1990; Logan and Scott 1996; Mulley and Eagle 1988). In many cases these decisions are based on assumptions about what is best for an individual patient without explicitly determining the patient’s values and preferences. Yet, there is evidence that many patients do have strong preferences for particular treatments (Henshaw et al. 1993), that these are not always predictable (Richards et al. 1995), and that doctors often fail to understand them (Coulter et al. 1994).
Patients’ views of different treatment options and their attitudes to risk are likely to be influenced by their personal characteristics and social situation as well as by the severity of their symptoms. Benign prostatic hyperplasia (BPH) is an example of a condition that has a detrimental effect on patients’ quality of life and which can be treated in a variety of ways using surgical procedures, medical treatments, or simply watchful waiting (careful monitoring without active treatment). Each treatment option involves risks as well as potential benefits. For example, prostatectomy (surgical removal of the prostate) can be very effective, but it involves risks of complications leading to incontinence, impotence, or even death. The goal of treatment in this usually non-life-threatening condition is to improve the patient’s quality of life. Outcome probabilities for each of the options can be calculated on the basis of research evidence, but studies of treatment efficacy are often confined to measuring biological markers. These may not be the outcomes most valued by patients, and even if they are, patients are likely to differ in their attitudes to risk and in the extent to which they can tolerate the symptoms (Mulley 1989). When patients with BPH were asked about their preferred treatment outcomes and their attitudes to the symptoms and the risks of treatment, it became clear that doctors could not hope to predict their preferences unless they explicitly asked for them (Wennberg et al. 1993). In situations such as this, where there is a range of treatment options with varying risk/benefit profiles, there would appear to be a strong case for systematically eliciting patients’ preferences and involving them in the decision-making process (Deber 1994).
Toward Shared Decision Making
A number of writers have argued that the doctor-patient relationship is undergoing a paradigm-shift away from the traditional paternalistic model towards a new form of decision making, which explicitly recognizes the patient’s autonomy (Charles et al. 1997; Emanuel and Emanuel 1992; Laine and Davidoff 1996; Quill 1983). The traditional model assumed that doctors and patients shared the same goals, that only the doctor was sufficiently informed and experienced to decide what should be done, and that patient involvement was limited to giving or withholding consent to treatment. Charles et al. (1997) distinguish three other models of treatment decision making: informed decision making, the professional as agent, and shared decision making. The informed decision-making model is the polar opposite of the paternalistic model, in that it assumes that the patient alone will make the decision once he or she has been provided with all necessary technical information. Thus, the patient’s preferences are preeminent in this model and the clinician’s role is reduced to that of providing technical information to support the patient’s decision. The pro-fessional-as-agent model is somewhere between these two extremes, in that it recognizes the importance of incorporating the patient’s preferences into the process, but still assumes that only the doctor has sufficient technical knowledge to make the final treatment decision. The decision remains with the clinician and is not, therefore, a shared one. In shared decision making, however, the intention is that both the process of decision making and the outcome – the treatment decision-will be shared. Shared information about values and likely treatment outcomes is an essential prerequisite, but the process also depends on a commitment from both parties to engage in the decision-making process. The clinician has to be prepared to acknowledge the legitimacy of the patient’s preferences, and the patient has to accept shared responsibility for the treatment decision.
Patients’ Preferences for Participation in Decisions
These are theoretical models or ideal types, but what is the evidence that patients want to participate in decision making? As we have seen, failures in communication of information about illness and treatment are the most frequent source of patient dissatisfaction. There is plenty of evidence that patients want more information, but this does not necessarily mean that they want to participate in decision making. A number of studies have investigated the extent of desire for participation among different groups of patients. In a study of 439 interactions between hospitalized adult cancer patients and oncologists, the majority (92 per cent) preferred to be given all information including bad news, but only 69 per cent said they wanted to participate in treatment decisions (Blanchard et al. 1988). A study of patients with hypertension found that 53 per cent expressed a desire to participate in treatment decisions, but physicians underestimated patients’ preferences for discussion about therapy in 29 per cent of cases and overestimated it in 11 per cent (Strull et al. 1984). Although many patients want to participate in decision making, a substantial minority appear to prefer a passive role.
Desire for participation has been found to vary according to age, educational status, disease group, and cultural background. For example, a study of 256 American cancer patients found that younger patients were much more likely to want active participation in decisions about their care: 87 per cent of patients under age 40 expressed a desire to participate, compared wth 62 per cent of those aged 40–59 and 51 per cent of those over 60 (Cassileth et al. 1980). The age differences in decision-making preferences suggest that the desire for involvement may be increasing over time, reflecting greater knowledge of the risks as well as the benefits of medical care and decreased willingness to submit to the authority of clinicians. Preference for an active role in decision making may also vary according to the stage in the course of a disease episode and the severity of the patient’s condition. A Canadian study found a much greater desire for active participation among a randomly selected population sample than among a group of newly diagnosed cancer patients, pointing to the difficulty in predicting the level of involvement desired when serious illness strikes (Degner and Sloan 1992). There may also be important cultural differences. A study comparing responses in different countries found that British breast cancer patients were less likely to prefer an active role than Canadian ones (Richards et al. 1995).
There are fears that encouraging patients to choose between competing treatment options places an additional burden on people who are feeling unwell and could cause anxiety and distress (Levy et al. 1989). This is a difficult subject to research, and few methodologically sound studies investigating the effects of patient participation have been published. Retrospective studies face the problem that patients’ perceptions of involvement in decision making may have been influenced by the outcomes of the treatment. In a Swedish study of 510 surgical patients, those who were dissatisfied with the results of the surgery were less likely to report that they had participated in the treatment decision (Larsson et al. 1992). Prospective studies involving independent assessments of the extent of participation would be required to overcome this problem.
Shared decision making involves sharing information about the limitations and risks of treatment. Patients with serious disease may prefer an optimistic rather than a realistic account of their chances of recovery. A Canadian study of patients with early stage breast cancer found that patients’ desire to adopt a positive approach to fighting their illness resulted in a tendency to want more aggressive interventions, notwithstanding the risks of the treatment (Charles et al. 1996). For example, patients tended to overestimate the possible benefits of chemotherapy and downplay the risks. Attempts to introduce a more evidence-based approach to treatment decision making may serve to invalidate patients’ values and beliefs and inadvertently undermine their coping strategies. Most of the cancer patients in this study were said to prefer a shared decision-making style, but they were concerned about how blame for bad outcomes might be apportioned. This illustrates another potential problem with a participatory style of decision making. Active involvement implies accepting responsibility for the outcomes of treatment even when these are adverse. Patients with life-threatening illnesses such as cancer may be less willing to accept shared responsibility than those with less serious conditions. In crisis situations, it is possible that some patients benefit more from a paternalistic than from an egalitarian consultation style.
Involving patients in treatment choices has the potential for harm, therefore, but it could lead to beneficial outcomes. If decision making is to be shared, the information to inform decisions must also be shared. Patients must be given help to obtain the information they need. Kaplan et al. carried out a series of studies in which patients with different conditions (ulcer disease, hypertension, diabetes, and breast cancer) were randomized to an educational intervention in which they were given information about treatment options and coached to ask appropriate questions in the consultation (Kaplan et al. 1989). The control group was given basic information only. The group of patients who had received coaching were more involved in the interaction and had significantly better health outcomes measured physiologically (blood pressure or blood sugar), functionally (activities of daily living), or subjectively (evaluation of overall health status).
Given the short consultation times experienced in most busy clinics, it is often unrealistic to expect clinicians to provide full information about the risks and benefits of all treatment options. This information is not always readily available to clinicians, let alone lay people. If patients are to be able to express their preferences, they require help in the form of user-friendly information packages and decision aids. Ideally this information should come from an independent source and be based on a sound overview of the scientific evidence. Such information is now available for certain diseases in the form of leaflets, videos, and multimedia packages. An evaluation of an interactive video system designed to inform patients about treatment choices for BPH found that use of the video system caused patients to be better informed and more satisfied with the decision-making process and led to improved health and physical functioning, although in this case it had little effect on the choice of treatment (Barry et al. 1997).
Research in situations where patients have been directly offered choice between two options has produced more equivocal results. Three studies in which breast cancer patients were offered a choice between mastectomy or breast-conserving surgery found no ill-effects of involving patients in the decision, but the findings conflicted on whether offering choice led to psychological benefits (Fallowfield et al. 1994; Morris and Royle 1988; Wilson et al. 1988). Having to make a choice between these options led to increased anxiety among some patients. It may be more important to allow patients an opportunity to express their concerns and preferences than to involve them in the decision itself. Despite the lack of evidence of additional benefit of mastectomy, a significant minority of patients opted for the more mutilating surgery, underlining the important role of patients’ values and beliefs and the difficulty in predicting these. Decision making in cases of serious illness can be a protracted process. Patients require time to come to terms with the choices facing them and seek a sympathetic hearing from the clinician. In some cases consultation style may have a more important effect on outcome than the decision itself. Real-world decision making may not always conform to the rational tenets of the decision theorists (Dowie 1996), but there is sufficient evidence to suggest that decisions that incorporate patients’ values produce more beneficial outcomes than those that ignore them.
Impact on the Health-Care System
At the microlevel of individual doctor-patient interactions, the arguments for giving patients more say in treatment decisions may appear persuasive, but what about the effects on the health system? Is there not a risk that allowing patients more autonomy will increase demand for health care to unaffordable levels? Many clinicians believe that patients will make irrational choices if they are allowed to express a preference. The fear is that patients will want investigations or treatments that are unlikely to do them any good. As well as posing ethical problems for clinicians, this could increase health care costs and lead to greater inequalities in access to care, especially if the demands of the most articulate are acceded to.
To some extent these fears are justified. After all, demand for health care has risen as populations become healthier, better informed, and more empowered. Inequalities in access to health care are a feature of most systems, and the tendency for the most deprived to get the worst deal seems ubiquitous. Better information has not led to an increase in people’s willingness to cater for their own health needs without resort to professional help. On the contrary, greater awareness of the potential benefits of medical care makes people want more of it.
Judging by the extensive coverage given to health issues on television and in the popular press and magazines, the public has an insatiable desire for health information. The wider availability of electronic information via the Internet is already having an impact on clinical consultations as patients seek out information on diagnostic tests or treatments and ask their doctors to provide them. The gap between the ‘information rich’ and the ‘information poor’ seems set to widen.
This clock cannot be turned back, so strategies will have to be devised for managing demand to ensure that health-care resources are used appropriately. Good quality information, for patients and clinicians, could have a role to play here. There is a need for education about the limits to medical care and the fact that interventions can be harmful as well as beneficial. Some studies have shown that giving patients unbiased information about likely treatment outcomes can lead to a reduction in demand. For example, an interactive video outlining treatment options for patients with benign prostatic hypertrophy led to a reduction in demand for prostatectomy (Wagner et al. 1995). Patients who were better informed about the risks and benefits of screening for prostate cancer were less likely to want the tests (Flood et al. 1996; Wolf et al. 1996), and patients given leaflets about the natural history of lower respiratory tract infections were less likely to re-consult their general practitioners (Macfarlane et al. 1997).
Currently, much of the information patients receive is optimistic about the outcomes of medical interventions. Whether the source is an individual clinician giving verbal advice or published material the patient has acquired, the chances are that the benefits will be emphasised and the risks downplayed. Clinicians are naturally optimistic about the treatments they are trained to provide, and much written material is published by groups with a vested interest in promoting demand for their products or services, for example, pharmaceutical companies, health-care providers, or professional bodies. Dispassionate advice is hard to come by. On the whole, governments or health-care payers have not seen investment in health information as a priority, except for traditional health education topics such as smoking reduction or dietary improvement. Little has been done to encourage a sceptical view of medical care. This may change as governments try to deal with the gap between public expectations and the availability of services, but educating populations about risk or how to access evidence and assess outcome probabilities is a daunting task. Doing this as a response to financial crisis in health-care provision may prove impossible, not least because people will be suspicious of the motive.
Pressures to provide more patient-centred care and to involve patients in decisions about their care lead inevitably in the direction of more individualized forms of care. The health professional will be expected to provide care in ways that more obviously than now respond to each individual patient’s concerns, preferences, and circumstances. Increasingly, the patient will come to have a greater voice in relation to the content and direction of consultations with health professionals, which will reinforce the process of increasing individualized care. However, health professionals, like any ‘people-processing’ occupations, substantially depend on the use of routines and familiar customs in history taking, and the use of investigative tests and treatments to manage the potential complexity of their responsibilities and get through the working day. The routinization of health professional decision making has been considerably reinforced in recent years, in both North America and Europe, by external pressures in the direction of managed care in which clinical autonomy has to be controlled by protocols, guidelines, and professional and external review. It is possible to foresee substantial dilemmas, particularly in the role of doctors as they attempt to meet the conflicting styles of individualized and routinized care in their clinical practice.
A number of developments may be expected to arise from such conflicts in the health professional role. Methods of involving the patient may have to be routinized in order to be incorporated into managed care. Eliciting patients’ preferences could be performed by interactive computer facilities supervised by paraprofessional or technical staff and kept out of core clinical contacts of the doctor with the patient. Additionally, issues of involving patients may be expected to be increasingly salient in health professional training, a familiar way in which professional, ethical, and scientific dilemmas can be presented to society as being taken seriously.
Most likely, the availability of high-quality, individualized care will increasingly be a fundamental component of inequality in health services, with more affluent social groups having access to individualized care and the less affluent receiving standardized care.
Increasing the patient’s voice has often been considered one of the main sources of potential threat to professional autonomy. The trends discussed in this chapter may appear to imply similar predictions. However, such analyses often require subscribing to a rather simplistic zero-sum game to account for patient-professional relations, where increasing the voice of the patient diminishes the authority of the doctor. Many of the analyses reviewed in this chapter, perhaps optimistically, anticipate mutually advantageous consequences of shared decision making.
However, whilst increased patient involvement does not necessarily jeopardise professional autonomy, it may challenge professional confidence. Health professionals increasingly feel under threat from diverse forces, including managerial intrusion, cost controls, medico-legal risks, and consumerism. Among other things, these forces expose both the explicit bases for medical decisions and also the enormous range of uncertainty. In numerous ways the traditional doctor-patient relationship left scope for latitude and discretion in decision making that rightly has been questioned as paternalism and professional defensiveness. However, these same elements may sometimes be a necessary resource for coping with contradictory or excessive demands. It will certainly be of vital importance to identify viable forms of practise, for occupations such as medicine, under circumstances when the uncertainties and value judgements involved in decisions about health and illness are more widely visible. The evidence presented in this chapter suggests that there is a substantial momentum behind calls to increase the responsiveness of health care systems to patients’ preferences and concerns.