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No child is an island: ethical considerations in end-of-life care for children and their families

Rapoport, Adam; Morrison, Wynne

Current Opinion in Supportive and Palliative Care: September 2016 - Volume 10 - Issue 3 - p 196–200
doi: 10.1097/SPC.0000000000000226

Purpose of review Ethical challenges are commonly encountered when caring for children with life-threatening conditions.

Recent findings Controversial end-of-life issues, such as physician-assisted death and medical futility, may also arise in children. The approach to these issues in children may be guided by the ‘adult’ medical literature; the age of the patient should not be a relevant factor in determining the morality of these acts. As such, the focus of this review is on ethical issues unique to children and adolescents by nature of their dependence on their parents. Appreciation that child well-being is best promoted when care aligns with parental beliefs, values and culture has given rise to the practice of family-centred care, which we prefer to call ‘family-partnered’ care. Occasionally, a family-partnered approach may challenge fundamental paediatric ethical principles, including best interests, developing autonomy, and the importance of honesty and truth-telling.

Summary This article explores the challenges that may arise when there is disagreement between the child, the parents, and the healthcare providers about care at the end-of-life and provides suggestions to clinicians about how to help resolve these conflicts.

aPaediatric Advanced Care Team, Hospital for Sick Children

bEmily's House Children's Hospice

cDepartments of Paediatrics and Family & Community Medicine, University of Toronto, Toronto, Ontario, Canada

dPediatric Advanced Care Team

eDivision of Pediatric Critical Care, The Children's Hospital of Philadelphia

fDepartment of Anesthesiology and Critical Care, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA

Correspondence to Dr Adam Rapoport, MD, FRCPC, MHSc, Paediatric Advanced Care Team, Hospital for Sick Children, 555 University Avenue, Toronto, ON, Canada M5G 1X8. Tel: +1 416 813 6905; e-mail:

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