Shared decision‐making: the debate continues

There is considerable debate about when, in which circumstances, and to what extent, patients should be encouraged to participate in decisions about their care. Many advocates of shared decision‐making suggest it should be restricted to preference‐sensitive decisions, i.e. those where the patient's values ought to guide the choice. It is seen as being most relevant in situations of uncertainty, in which two or more clinically reasonable alternatives exist and where the patient has indicated a desire to participate in the decision‐making process. ¹

Informed consent, on the other hand, is perceived to be appropriate, and indeed necessary, for all decisions of significant risk even if there is only one treatment possibility. Even in these situations the patient has to choose between two courses of action, to accept or reject the treatment. Health professionals tend to see informed consent as simply the process of obtaining a signature on a consent form, but it ought to be much more than this. Patients need full information about treatment options and outcomes, including the option of no treatment, if they are to make truly informed choices. However, in some situations, for example decisions about screening tests or vaccination, professionals often express the fear that the provision of information and choice will increase the likelihood that people will opt out of the intervention, with consequent risks to their own and the public's health.

McNutt has argued that the concept of shared decision‐making is a misnomer on the grounds that physicians should never make choices for patients. ² Instead they should play the role of navigator, communicating risk and outcome probabilities and helping patients to make informed medical decisions for themselves. Others draw attention to the fact that some patients prefer to remain uninformed and to delegate decision‐making responsibility to the doctor. ³ Either way, it is important to determine what role the patient wants to play in the process and to tailor information‐giving and decision‐making style to their requirements. ⁴

There has also been debate about the primary aims of shared decision‐making and hence which criteria and outcome measures are most appropriate when evaluating the effects of interventions designed to promote it. ⁵ In practice the outcome measures used in randomized controlled trials have tended to focus on patients’ experience of the decision process, the type of treatments undergone, health outcomes and economic variables. ⁶

Impact on decisional conflict (psychological uncertainty relating to feeling uninformed) has been commonly used as an outcome measure. ⁷ Patient satisfaction and anxiety have also been frequently studied. But Bekker et al. have argued that since raised levels of anxiety are associated both with more effective decision strategies and with stressful health interventions, anxiety is an inappropriate outcome measure. ⁸ In a separate paper the same authors argued that patient satisfaction was also problematic as an outcome measure, because reduced satisfaction could be interpreted as a favourable outcome if it resulted from a more realistic evaluation of treatment options. ⁹

The extent to which treatment choices are consistent with patients’ values has been less frequently studied, yet some have argued that this should be the primary outcome. ¹⁰ An appropriate measure of decision quality would focus on the extent to which patients acquire relevant knowledge and on the level of agreement between their relative preferences for the salient outcomes of each treatment option and the treatment or management plan they eventually choose.

This issue of Health Expectations includes some important contributions to the debate. Hargreaves et al. (p. 161–171) point to the tension between informed choice and children's health in the context of screening tests for babies, suggesting that clear communication guidelines are required to assist staff in managing the tension. ¹¹ As the reduction in rates of MMR vaccination illustrates most forcibly, uninformed dissent may be more dangerous than the failure to obtain fully informed consent in certain circumstances. Beaver et al. (p. 103–113) discuss the different roles patients want to play and show how these can vary according to the circumstances. ¹² They argue that a desire for participation does not always equate to a demand for decision‐making responsibility and they caution against simplistic assumptions about patients being ‘passive’ or ‘active’. Meanwhile, Mazur et al. (p. 97–102) looked at the relation between patients’ preferred role and their information needs. ¹³ They found that patients wanted to know doctors’ opinions, as well as wanting objective information about treatment benefits and harms, and conclude that doctors’ views are likely to be the dominant influence on patients’ decisions. Finally, Charles et al. (p. 114–125) raise a number of questions about assumptions underlying the development and evaluation of decision aids, designed to open up the debate still further. ¹⁴ I hope readers of Health Expectations will respond to the challenge!