Paediatric decision-making is the art of respecting the interests of child and family with due regard for attitudes and facts. The best interest standard (BIS) and shared decision-making (SD-M) are increasingly used in the same context but are generally believed to conflict with each other. Simply said the BIS determines what is best for a person without decision-making capacity, while SD-M is concerned primarily with how a decision is best made by someone with decision-making capacity.
Based on a extensive qualitative and quantitative data set and underpinned with examples from clinical practice in pediatric palliative care, pediatrics and rare disease we study the realtionship between both concepts as part of clinical reasoning and introduce the shared optimum approach (SOA).
In a subproject regarding "Narratives on ECMO in peadiatric" we study the aspect of futility and the technological imperative on health care providers in the context of extracorporeal membrane oxygenation (ECMO).
In a subproject on "Decision-Making and Narratives in Inoperable Brain Tumors in Childhood" we study the role of parents and health care providers in extremely difficult, futile decision-making situations at the example of inoperable braintumors in childhood. Based on a mixe-method study we try to describe the decision-making process, the significance of concepts such as best interests and the outcome of decisions such as palliative radiation.
Dr. med., Dr. sc. med. Jürg Streuli, Institute of Biomedical Ethics and History of Medicine and University Children's Hospital Zurich
Lead: Jürg C. Streuli
PhD-Student (2017-): Sarah Eaton
PhD-Student (past): Manya Hendricks
MD-Student (2016-): Jovana Jucker
Research assistant (2018-): Lara-Lynn Hautle
MA-Student (past): Lara-Lynn Hautle, Janne Hüls, Stephanie Meyer, Sophia Weiland
Currently, this research is supported by the Starr international Foundation and the University Children's Hospital Zurich and Children's Research Center