What makes difficult decisions so difficult?: An activity theory analysis of decision making for physicians treating children with medical complexity

• Published in: Patient education and counseling 2020-11, Vol.103 (11), p.2260-2268
• Main Authors: Buchanan, Francine, Cohen, Eyal, Milo-Manson, Golda, Shachak, Aviv
• Format: Article
• Language: English
• Subjects: Activity theory; Children with medical complexity; Communication; Decision Making, Shared; Family - psychology; Female; Humans; Interviews as Topic; Male; Motivation; Nursing; Patient Participation; Pediatrics; Physician's Role; Physician-Patient Relations; Physicians - psychology; Professional-Family Relations; Qualitative Research; Shared decision making; Trust
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2020.04.027

•Making a difficult decision is the process of trying to find certainty in the uncertain.•Decision-making is challenging due to a lack of evidence, unclear rules, and conflicting views of the physician’s role in the process.•In the face of uncertainty, decisions are not truly shared but made either by the physician or the family.•Challenges include a lack of evidence, unclear rules, and conflicting views of the physician’s role in the process. Shared Decision-Making (SDM) has been advocated as an ideal model of decision-making in the medical encounter. Much of the research into SDM has focused on measuring if SDM is happening, or facilitating SDM by developing specific models and tools. Understanding SDM as an activity in context, has remained mostly absent from the research. This study sought to garner details on the actions, judgements and motives that comprise the activity of making a decision, in the context of a shared process between physicians and families of Children with Medical Complexity (CMC). 11 physicians who treat CMC were interviewed. Activity Theory framework was employed to understand the complexity of the decision-making process in context. Ambiguous information, conflicting rules, and beliefs on roles all contribute to the difficulty of decision-making. A decision is achieved by allocating the decision to one party. Lack of tools, rules or beliefs that would assist sharing the decision between the physician and patient/family, contributes to the need to allocate the decision to one party. In developing SDM policies and tools, one must consider all aspects of the SDM activity system, and how they influence each other and the activity as a whole.