The promise of shared decision‐making in paediatrics

On one end of the spectrum of decision-making in medicine is paternalism, in which the clinician formulates and communicates the treatment plan to the family. At the other end is informed choice, in which the family decides after gathering information from the clinician or other sources. Situated between these extremes, shared decision-making (SDM) involves the clinician explaining the medical evidence for different options and family members discussing these options in the context of their personal values. With both the medical evidence and personal values delineated, the clinician and family jointly determine the treatment plan. SDM is especially helpful for clinical situations with multiple evidence-based options and when variation exists in how families weigh their risks and benefits. Based on findings primarily from adult healthcare, researchers and policymakers, including the Institute of Medicine and the World Health Organization, have focused increasing attention on SDM. SDM is supported by studies that have repeatedly found that improving provider-patient communication is directly linked to satisfaction, adherence and health outcomes. Because socio-cultural differences between clinicians and patients may impair communication and decision-making if not addressed, explicitly discussing values in the context of medical decisions is also likely to improve care for minority groups underrepresented in the health professions. In the United States, the 2010 health care reform law marks an unprecedented move towards three elements that are essential for SDM: transparency, consumer protection and evidenced-based medicine, achieved through an investment in comparative effectiveness research. The law establishes a federal programme to promote the implementation of SDM and facilitate the creation and dissemination of patient decision aids – validated tools to promote SDM by helping families learn about the risks and benefits of treatment. This provision also encourages that decisions be made in the context of families’ personal values. In addition to action on the federal level, states have also recognized the potential benefits of SDM. In 2007, Washington became the first state to enact a law that provides enhanced legal protection to doctors practicing SDM as means of obtaining informed consent. The law also requires a demonstration project to assess the effects of SDM on preference-sensitive conditions such as chronic back pain. Other states are considering similar legislation. European countries are also encouraging increased patient involvement in medical decision-making. These efforts range from a national program in the Netherlands that develops and publishes patient decision aids on a government website to judicial rulings in France that have strengthened a patient’s right to information. Overall, the legislative action supporting SDM underscores its emergent international importance. Despite this growing prominence, relatively little attention has focused on SDM in paediatrics. A review of the decision support needs of parents found that parents are interested in participating in decision-making and desire information and support when evaluating options (1). Other work demonstrated that communication skills training for paediatric clinicians may improve behavioural health outcomes, especially for children from minority groups (2). Few studies have explicitly examined SDM. In one, more than 70% of parents expressed an interest in being involved in SDM for otitis media (3). In response to scenarios presented by that research team, parental involvement was associated with both improved satisfaction with otitis media care and decreased antibiotic use. More broadly, national guidelines for paediatric conditions such as attention deficit hyperactivity disorder (ADHD) and asthma have increasingly prioritized the involvement of the patient and family (4,5). The optimal implementation of these guidelines depends upon continued work to understand how best to integrate the patient, family and clinician as partners in decision-making. Decision aids have been developed to help clinicians implement SDM in clinical practice; however, these are largely focused on adult conditions. A consensus set of internationally endorsed criteria is available to guide their creation (6). Of particular importance, meta-analyses of randomized trials of decision aids have shown that these tools improve the quality of health care decisions and reduce the overuse of options that patients do not value (7). Paediatric clinicians may benefit from the growing, but still small, group of paediatric decision aids that address such topics as ADHD, birth control, depression, diabetes, enuresis, headaches, smoking cessation, thyroid disease, tonsillitis, warts and weight control (8).