New Study Highlights Ethical Concerns in Decision-Making for Children with Extended Consciousness Disorders - medtigo



New Study Highlights Ethical Concerns in Decision-Making for Children with Extended Consciousness Disorders

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Over the past few decades, the practice of medicine has shifted from a paternalistic model to one based on the ethical principle of respect for patient autonomy and, more recently, to shared decision-making (SDM). SDM involves an active dialogue between patient and physician aimed at reaching a mutual understanding and agreement on a treatment plan. While SDM is widely recommended by guidelines and integrated into medical training, evidence suggests that it is inconsistently enacted in clinical practice.   

According to BMC Medical Ethics, the quality and level of patient involvement in SDM vary depending on physicians’ conceptualization and perceived relevance of SDM, limited time for dialogue, and ambiguity around which decisions require SDM. In the context of pediatrics patients living with prolonged disorders of consciousness (PDOC), SDM presents an additional layer of complexity due to the involvement of three parties: the child, parent(s), and the clinician. While SDM is espoused as an ideal to facilitate family-centered care, research is immature on how this approach is realized in the setting of care for children living with severe disorders of consciousness.   

Secondary analysis of semi-structured individual interviews conducted with ICU physicians, paediatricians, and neurologists aimed to explore their shared decision-making (SDM) practices, representations, and ethical justifications when managing paediatric patients with prolonged disorders of consciousness (PDOC). The study found that participants had different interpretations of SDM in terms of its conceptual and moral aspects.  

The study’s primary finding was that participants reported investing in different aspects of SDM, including the brakes approach, the orchestra director approach, and the sunbeams approach. The brakes approach is characterized by the physicians’ need to balance the delicate power relationship between families and doctors by swinging between bestowing unconditional decisional freedom to families and re-establishing their authority when families’ decisions are no longer acceptable.

Participants supporting the orchestra director approach emphasized the importance of the extent to which the process is fair by including everyone in the conversation, voicing everyone’s wishes/concerns, increasing physicians’ awareness, and reducing biases. For those supporting the sunbeams approach, SDM is a matter of engaging in a process aimed at reaching consensus, building relationships, and cultivating the virtues of the “good” physician.  

Previous research has shown that paediatricians often frame their decision-making approach as SDM, but their roles and responsibilities align with an intentional physician-led approach, with the main ethical justification being the protection of the child and parents from harm. This study aims to explore how physicians use SDM when caring for paediatric patients living with PDOC and how they represent and morally justify their preferred approach.

The study aims to identify which aspects of SDM are more meaningful to physicians in this context rather than focusing on a given aspect of the SDM approach. A deeper understanding of how SDM is practiced in the clinical setting is essential to reduce the gap between ideal and actual practices and to advance medical education on decision-making.  

The participants’ preferred approach was also influenced by the interests of the family to balance the values adequately. Physicians are aware of stressors that families experience, giving them the time to adjust to the situation or protecting the family from guilt or regret over a decision.

Limiting options, as proposed in the brakes approach, is a strategy that was voiced in another study, where physicians felt obliged to establish limits, particularly when the lack of beneficence of a treatment was evident. The relevance of accompanying parents and family members throughout the whole process and giving them the chance to come to their conclusions is acknowledged in the literature as well.  

The study’s results suggest that specific elements and their relevance in performing SDM could be extracted and explained from analyzing the interviews, which allowed the researchers to see beyond the general and broad description of SDM. Results showed that not only values of patients and families but also the values and moral justifications of physicians reshape the process and outcome of SDM in a significant way.


SDM involves work that is cognitive, emotional, and relational: SDM cannot be reduced to a simple transaction where information is shared and preferences are accounted for. It requires a significant investment in the relationship with patients and families, in one’s professional identity, and in one’s emotional commitment to care.  

Glynn and colleagues argued that the underpinning principle for SDM risks being overshadowed by arguments that SDM is a method to reduce healthcare costs or to ration care to patients.

The study’s results showed that participants were aware that the ethical rationales for proxy decision-making in pediatrics differ from those guiding SDM with competent adults. Vemuri et al. conducted a qualitative study with pediatricians caring for children with LLC to explore SDM practices and ethical justifications for enacting SDM.  


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