Physician-reported characteristics, representations, and ethical justifications of shared decision-making practices in the care of paediatric patients with prolonged disorders of consciousness

BACKGROUND: Despite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM. METHODS: We used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis. RESULTS: We found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process. CONCLUSION: Our results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00896-y.