Wider interests override individual preferences

One of the clearest situations which puts severe limits on SDM is where an individual’s preference overrules the responsibility of clinicians for the safety of the individual or the well-being of the broader population.

Antibiotics for self-limiting illness A good example of this situation is where antibiotics are being requested for self-limiting illness.16 This scenario may occur when a parent feels a child needs an antibiotic for a viral illness. There is of course plenty of room to negotiate, to educate, and to offer the option of watchful waiting, pending more developments. We lack a good term for this respectful form of arbitration. But there is no genuine clinical equipoise in this situation: antibiotics would not improve the child’s health and may increase antibiotic resistance. Prescribing antibiotics because they are requested by people does not fulfil the test that reasonable options can be offered and described.

Unscheduled opiate prescriptions A similar wider set of responsibilities also exists when an individual who has an addiction to drugs such as opiates requests additional medication outside an agreed schedule or agreement. A particularly difficult situation occurs when people are visiting many clinics seeking prescriptions for opiates, often on the same day, and they are at risk of selling or distributing the drugs to others. Such requests do not represent situations of clinical equipoise. As in the previous example, exploring context issues will be critical. What is motivating the demand? What are the risks of supplying the drugs compared with the benefits? Is prescribing likely to support crime? There are contingencies available to clinicians, such as negotiating an agreement or coming to a compromise, recognising that point-blank refusal can lead to conflict and potential harm.17 Nevertheless, SDM cannot proceed in such fraught situations.

Vaccine hesitancy The resistance to the use of vaccines provides a complex example of where wider public interest might be viewed to override the preferences of individuals. From a population perspective the emergence of either herd immunity, or the likely reduced spread of a harmful virulent vector, is viewed as argument enough for taking a persuasive approach to vaccination. Offering financial incentives to clinicians to vaccinate a significant percentage of children, or denying access to school or continued employment are examples of persuasive efforts to limit the freedom to decline vaccination. Such incentives can be debated of course. Nevertheless, SDM faces limits when strong public health arguments prevail, at least from the perspective of health professionals who place a high priority on the wider societal benefits of immunisation methods. However, there are also arguments to support taking an adapted SDM approach to vaccine hesitancy. In vaccine hesitancy, the provision of good information coupled with the development of trust in a longitudinal series of interactions may be an effective strategy.18

Absence of or insufficient evidence of benefit

Scientific evidence for or against a course of action is a key determinant of how clinicians frame decisions in discussions with patients, although the influence of peers and accepted norms are arguably just as important.19 In some situations, for a range of reasons, increased attention is frequently given to the absence of evidence of net benefit, especially when the evidence is of low quality or contradictory.

There are three common situations where this may be the case.

Lowered decisional capacity

It is perhaps obvious that SDM is not appropriate where an individual has lost the capacity for making decisions.21 This could be transient, as in loss of consciousness or the influence of drugs, or prolonged, as when cognitive decline is present. Decisional capacity is also a gradient and may vary over time, so clinicians can benefit from the assistance of time and repeated assessments to establish the threshold at which SDM with people who have insufficient cognitive capacity remains appropriate.21 It may well be that others can act as proxies and represent the views of the individual. Parents are asked to act as proxies for children, where the interest of the child may need to be represented by others.

These situations and the levels of involvement possible are special cases that deserve more detailed consideration elsewhere. Nevertheless, such cases should remind us that even for proxies, or for people who we deem as having sufficient decisional capacity, that the quality and simplicity of information are critical. Our capacity to process information can be severely compromised when we are under stress, realising that a close relative is seriously ill and may not recover. Health professionals tend to overestimate people’s ability to assimilate and process information, especially in high volume or complexity.

Profound existential uncertainty

It is also clear that profound uncertainty and serious illness can lower decisional capacity, and place limits on SDM. A pulmonologist describes her difficulty counselling people with incurable lung cancer. She notes that an increasing number of second-line treatment options are available: they are efforts to delay cancer progression rather than offer a cure. Sometimes these treatments lead to remission but more commonly the treatments lead to severe, painful side effects and do not substantially delay progression. However, indivdual iresponses to treatments vary and are unpredictable. Nonetheless, despite the uncertainty, the offer of more treatment is viewed optimistically, although this optimism may be misplaced. There is evidence that many clinicians make strenuous efforts to provide information about these complex agents that is barely digestible. At the same time, the inherent uncertainty clouds the prognosis that death could be close, although impossible to predict.22 Euphemistic language often amplifies optimism. Rational comprehension is undermined by fear and emotion and so decisional capacity is severely compromised.14 23

Clinicians tend to resort to guidelines, perhaps guided by attempts to make decisions that are, in their view, in the best interest of the person. For example, with incurable lung cancer, Landmark et al describe this uncomfortable process as one of competing authority to decide.24 Clinicians try to give ill individuals deontological authority, whereas when seriously ill, individuals point to the clinicians’ epistemological authority.24 Even clinicians who are skilled communicators in such situations will regularly experience that attempts at SDM seem to overwhelm people. Patients, in times of great need and uncertainty, often want to trust the expertise of others. Eagerly involving seriously ill people in decisions can put their well-being at risk.25 26

Possible solutions

Clinicians inevitably meet these situations, and often, they are compounded by concern, stress and emotion, at individual and family levels. There are no simple solutions. However, we advocate the use of approaches that will likely save time in the long term, by building trust, preserving dignity and bolstering autonomy where possible. These approaches are summarised in the table below table 1.