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Nursing Ethics
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Working with Children in End-of-Life Decision Making

Joanne Whitty-Rogers

St Francis Xavier University, Antigonish, NS, Canada, jrogers{at}stfx.ca

Marion Alex

St Francis Xavier University, Antigonish, NS, Canada

Cathy MacDonald

St Francis Xavier University, Antigonish, NS, Canada

Donna Pierrynowski Gallant

St Francis Xavier University, Antigonish, NS, Canada

Wendy Austin

University of Alberta, Edmonton, AL, Canada

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families.

Key Words: best interests • children’s autonomy • end-of-life care • nurses’ role • relational ethics

Nursing Ethics, Vol. 16, No. 6, 743-758 (2009)
DOI: 10.1177/0969733009341910
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