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For paediatric patients with serious illness and their families, medical decision making is complex.1 Shared decision making requires the clinical team to clearly communicate available prognostic information, identify what is most important to the patient and family, and guide them in integrating prognostic information with what matters to them in a way that informs clinical decisions. In paediatric serious illness, prognostic uncertainty makes this process especially challenging.2 3
Palliative care focuses on discerning a patient’s and family’s ‘goals of care’, yet we lack a tool for translating these goals in a way that supports complex decision making. Too often paediatric clinical teams offer an intervention contrasted with an option to ‘not intervene’ and ask patients and families what they want to do. This ‘either-or’ approach sets up a false dichotomy and leaves those patients and families feeling stuck between two choices without clear, medically appropriate, goal-based recommendations. In other instances, teams make recommendations regarding medical decisions that are skewed by their own values and preferences, rather than informed by those of the patient and family.
Clinicians struggle to offer clear, goal-concordant treatment recommendations due to a systematic failure of communication training in medical education. Most paediatricians are not taught to work with patients and their families to identify their hopes and worries and use those …
Contributors Dr. AP and Dr. JMS drafted the initial manuscript. Ms. JEF, Ms. EMF, and Dr. JW critically reviewed the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.