High-stakes decision making for young children – an approach to parental refusals of treatment

Dr Janine Penfield Winters1

1Bioethics Center, University Of Otago, North Dunedin, Dunedin, New Zealand

When shared decision-making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward.   My experiences as a paediatric palliative care doctor exposed me to disagreements about high-stakes medical interventions for young children. In this talk, I will first discuss some of the cases that sparked my passion for the topic. Then I will briefly summarize the frameworks for decision-making for young children- from the Best Interest Standard and to the newer (and better, in my opinion) Harm Principle and the Zone of Parental Discretion. I will narrow the topic to parental refusals of recommended treatment in conditions of complexity and uncertainty. Even when clinicians and arbiters use a standard or framework to approach a confict, it can continue be difficult to decide what to do. Potential pitfalls include bias, errors of omission and reductionism of complexity. I will outline and defend a new decision making tool that breaks the big picture into sub-steps to analyze identify key questions. The tools is designed to assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution.


Janine Penfield Winters, M.D. is a Palliative Medicine Specialist and bioethicist who immigrated to New Zealand from the USA in 2014.   She currently works as a clinician at the Otago Community Hospice and as a Senior Lecturer at the Bioethics Centre at the University of Otago.  Within bioethics her interests are clinical ethics committees, end-of-life ethical issues for adults and children and high stakes decisions-making for children.  Prior to moving to New Zealand, Dr. Winters was the founding physician director for a paediatric palliative care program at a large children’s hospital in the USA.