Table 1

Suggested approaches when shared-decision making is inappropriate or difficult

Exemplified scenarios (age in brackets)Suggested approaches
Wider interests override individual preferences
Vaccine hesitancy: Samira and Yael do not want their child (1) to receive a vaccine that is effective to reduce the severity of cases and transmission of a potentially lethal disease. They are worried about potential long-term side effects. Moreover, they are vaccine-hesitant and they prefer not to get vaccinated at all. While at the moment there have been no outbreaks, legal mandates have been introduced requiring vaccination for admission to the local school.A clinician might proceed by declaring that although it is normal to offer options where reasonable, situations exist that put limits on choice. One approach is to explain her responsibility to society at large and to follow professional or legal standards, before making an effort to motivate the parents to consider vaccination. A possible approach, closer to SDM, is to explore, listen, inform and take time to build trust, avoiding persuasion.
Absent or insufficient evidence of benefit
Absence of evidence: Samantha (37) wants to try a herbal preparation as a treatment for her severe depression, anxiety and panic attacks. Her clinician finds no evidence supporting its use, although no report of serious harmful effects. At the same time, the clinician worries that Samantha will not agree to more effective therapy and there are grounds to be concerned about suicide.Absence of evidence: Honest discussions would highlight the uncertainties surrounding the use of a herbal preparation that has no evidence of benefit, and voice a parallel concern that Samantha needs effective treatment. Where people wish to use approaches that have no supporting evidence of benefit nor serious harm, clinicians may want to advocate for a combined approach by suggesting the addition, where feasible, of known effective therapy.
Scientific evidence of inferiority: Patients that wish to use treatment that has lower effectiveness than safer alternatives put limits on SDM. The ability to uphold the existence of clinical equipoise is challenged. As in other similar situations, a possible approach is to explore, listen, inform and take time to build trust, as a way to guide Michael to take steps to lower his risk.
Scientific evidence of inferiority: Michael (53) has multifactorial high cardiovascular risk and according to guidelines he should be take active steps plus medications to reduce the risk of myocardial infarction and stroke. However, Michael is focused on his cholesterol levels and wants to to try chia seeds, an approach where there is no evidence of effectiveness.
Cost-effectiveness and regulatory restraints: María wants her son (2) to receive a new drug for his congenital condition, considered a rare disease. Her paediatrician informs her by letter that the novel drug is not covered by her health insurance due to cost-effectiveness issues. She has thought of going to a lawyer. Her primary care clinician is aware of the policy decision, and while willing to be her advocate, is careful not to raise her hopes that she could reverse policy decisions of this nature.Cost-effectiveness and regulatory restraints: Declarations that novel therapies are not judged to be cost-effective are increasingly commonplace and set limits on SDM. Discussions at individual levels are helpful when they explain the scientific evidence and the deliberations and trade-offs that led to the policy-level decisions.
Lowered decisional capacity
Ramón (75) has deteriorating cognitive impairment. He has previously told his clinician of his preference to delay surgery for an expanding abdominal aneurysm. Now, the aneurysm has reached a diameter where surgery may be indicated, but the balance between the risk and the benefit from surgery is small. The surgeon fears that Ramón has lost the capacity to declare an informed preference, and is uncertain about how to proceed.Lahey et al 21 suggest a tailored approach based on an assessment of decisional capacity and availability of a surrogate. If, in this situation, Ramon is considered to have lost capacity, then engaging a surrogate would be the right approach, where the surgeon would also need to convey Ramon’s previously declared preference as part of the decision process. Absent a surrogate, directive guidance supported by ethical advice would be an alternative.
Profound existential uncertainty
Jane (63) has incurable lung cancer. Her clinician explains that there are additional second-line expensive treatments that may, for some people, lead to a temporary remission, although more commonly, the treatments lead to severe, painful side effects that may lower her quality of life. The clinician, carefully explaining the complex trade-offs, admits that it is impossible to predict with certainty which of these two outcomes Jane will experience. Jane, already anxious, says that her priority is to spend her last days peacefully.Moving away from explicit decision-making to solace, support and guidance may be more appropriate for Jane.
In these situations, evidence shows that people value multiple brief conversations that acknowledge emotions and explore priorities in the face of declining health.