Ethical allocation of resources in paediatrics — formative SAQs

SAQ 1 — Principles, scarcity and the locus of decision (10 marks)

A regional paediatric service is funded to offer a one-off, multimillion-dollar gene therapy for spinal muscular atrophy to only a small number of children each year. Several infants could benefit. The treating team is divided about how to choose. [3] [9]

Questions

1. Name the four allocation principles and the procedural framework that should govern the decision. (5 marks) [1] [2]
2. Classify this scarcity and state the correct locus for the decision, and why. (3 marks) [3]
3. State two biases that must be excluded and one safeguard that must accompany any such decision. (2 marks) [8]

Model answer

Principles and framework (5). The four allocation principles set out by Persad, Wertheimer and Emanuel are: maximise benefits (most lives or life-years saved), treat people equally (lottery or first-come among comparables), prioritise the worst off (sickest and youngest), and promote instrumental value. The procedural framework is Daniels and Sabin's accountability for reasonableness, whose conditions are publicity (criteria are public), relevance (relevant to stakeholders), appeals (a revision and appeal pathway exists) and enforcement. A defensible decision is one a reasonable person can accept even when they disagree with the outcome. [1] [2]

Classification and locus (3). This is cost-based scarcity — a beneficial therapy is too expensive to offer to all who could benefit. The correct locus is a macro or meso funding body, such as a health-technology-assessment organisation, using explicit criteria including cost-effectiveness, equity and budget impact. The bedside clinician's role is to advocate for the child within the transparent system, not to gatekeep silently, because covert bedside rationing is ethically perilous. [3] [9]

Biases and safeguard (2). Two biases that must be excluded are disability (quality-of-life or QALY bias against disabled children whose life-years count equally) and socioeconomic status or family influence. A safeguard that must accompany the decision is a documented, appealable rationale plus audit of who receives the resource by disadvantage, so systematic inequity is corrected over time. [8]