What’s Best and Who Decides for Seriously Ill Infants? A Malaysian Perspective

Abstract

Pediatricians and parents have co-fiduciary obligations to decide on medical treatment for a child. When life-sustaining treatment is no longer beneficial in seriously ill infants, most pediatricians in Malaysia support parents in a shared decision-making process. Occasionally, it can be challenging to decide what is best, whose decisions to make, and how to navigate uncertainties, value conflicts, and social justice issues that arise. Some of the pediatric ethics themes in Malaysia include moral distress due to professional obligation, the moral significance of withdrawing versus withholding life-sustaining treatment, decision-making for infants with elusive diagnoses or prognostic uncertainties, and infants of forced migrants with sociopolitical barriers to care. Several cases will be described to illustrate these ethical issues, as well as the pediatric ethics framework and approaches that can be considered to decide what is best for these infants. Pediatricians feel obligated to do their best, treat every child and family the same, and feel morally distressed if unable to do so. They can consider gathering more information and perspectives and utilize these frameworks to consider what is best for a child. In moments of conflict, respectfully seeking opinions, values, and concerns from the family through open communication is crucial to resolving disagreements. Clinical ethics deliberation can provide clarity in challenging moments and suggest ethically acceptable options. Clinical ethics mediation can facilitate difficult conversations and bring resolutions and closure for stakeholders. Within these moral spaces, the responsibility of heavy decision-making can thus be shared and reflected upon.