"Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt."

J Med Ethics. 2014 Jun 10. pii: medethics-2013-101395. doi: 10.1136/medethics-2013-101395. [Epub ahead of print]

Parents who wish no further treatment for their child.

de Vos MA1, Seeber AA2, Gevers SK3, Bos AP4, Gevers F5, Willems DL1.

Author information

• 1Section of Medical Ethics, Division of Public Health and Epidemiology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
• 2Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
• 3Department of Health Law, Division of Public Health & Epidemiology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
• 4Department of Paediatric Intensive Care, Emma Children's Hospital/Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
• 5Egmond, The Netherlands.

Abstract

BACKGROUND:

In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents.

OBJECTIVE:

To discuss who can best protect a child's interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership.

METHODS:

We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians.

CONCLUSIONS:

Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.