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Precision decisions: tailoring decision-sharing in contemporary paediatric healthcare
  1. Bryan Siegel1,2,
  2. Katie Moynihan1,2,3
  1. 1 Cardiology, Boston Children's Hospital, Boston, Massachusetts, USA
  2. 2 Pediatrics, Harvard Medical School, Boston, MA, USA
  3. 3 Children's Hospital at Westmead Clinical School, The University of Sydney, Sydney, NSW, Australia
  1. Correspondence to Dr Katie Moynihan, Cardiology, Boston Children's Hospital, Boston, MA 02115, USA; Katie.Moynihan{at}cardio.chboston.org

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Decision-making in paediatric health is evolving from an era of paternalism to an approach centred on the interests and preferences of patients and parents.1 2 The character of decision-making for children has also changed dramatically. The evidence base is rapidly shifting, patient complexity is high and innovative medical and technological advances make chronic diseases more manageable, although often at the expense of invasive, potentially burdensome therapies. Decisions are often time critical and at a pivotal nexus of life and death. This landscape of paediatric decision-making is shaded in grey, with uncertainties, and a diversity of values and weight placed on benefits and burdens. Patients and families have increased access to information of varying quality and a greater expectation of participating in their medical care. In an era of patient autonomy and a widening zone of parental discretion, healthcare providers are at risk of neglecting one of the most important parts of our job by not participating in these medical decisions. Shared decision-making (SDM) is the preferred method of determining paediatric treatment plans.3 4 While a nebulous term, SDM requires a partnership, exchange of information and discussion of values that allow providers to make informed, goal-concordant recommendations.2 5

The article by Tadros et al 6 does an excellent job in exploring how families view decision-making in the paediatric cardiac population. When asked ‘who should make this decision?’, families overwhelmingly wanted to have near equal input on the variety of decisions for which they were surveyed, including both ‘technical’ medical situations (eg, starting antibiotics) and ‘non-technical’ decisions (eg, palliative care referral). Similarly, less than 25% of all respondents reported extreme ends of the …

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Footnotes

  • Contributors KM conceptualised and designed the paper and reviewed, revised and edited the manuscript for important intellectual content. BS drafted the initial manuscript. Both authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • 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 Commissioned; externally peer reviewed.

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