Neonatal palliative care and end-of-life decision-making — formative SAQs

SAQ 1 — Perinatal palliative care and a window-of-opportunity decision (10 marks)

A term newborn is ventilated and unresponsive three days after a severe hypoxic-ischaemic insult. Neuroimaging shows severe, irreversible injury and the prognosis for meaningful recovery is poor. The parents, who are present and engaged, ask what the team recommends. [12] [10]

Questions

1. State the best-interests principle that frames this decision and the factors you would weigh. (4 marks) [10]
2. Explain the "window of opportunity" concept and why a redirection decision, if made, is most defensible now. (3 marks) [12]
3. Outline how you would run the goals-of-care conversation and what you would document, including the comfort plan. (3 marks) [1] [4]

Model answer

Best-interests principle and factors (4). For a newborn who cannot decide for themselves, the best-interests standard weighs the benefits of continued life-sustaining treatment against its burdens from the baby's point of view. The factors to weigh are the chance of survival and meaningful recovery, the relief or burden of continued treatment, the preservation of relationships and future development, and the cumulative burden — suffering, loss of dignity and prolonged dying — set against any achievable gain. [10]

Window of opportunity (3). Wilkinson described the window of opportunity: after a catastrophic, irreversible brain injury the prognosis is clearest in the first days, and a redirection or withdrawal decision is most defensible in that window. As time passes the picture muddies, complications accumulate, and the same decision becomes harder to justify and harder to execute well, so a decision reached now is more defensible than one deferred. [12]

Conversation and documentation (3). Set the scene, give a warning shot, and share the prognosis honestly in plain language. Ask the parents what they understand and what matters most to them, explore their values and fears, and agree a plan you both own. Bring a second neonatologist and the team to consensus beforehand, and use a professional interpreter if needed. Document the benefits and burdens analysis, who was present and agreed, what will and will not be offered, the comfort and symptom plan, and the bereavement follow-up. [1] [4]

SAQ 2 — Withholding versus withdrawing, futility, and the dispute pathway (10 marks)

An extreme preterm infant with progressive post-haemorrhagic hydrocephalus and cystic periventricular leukomalacia cannot be weaned from ventilation. The team agrees intensive care can no longer achieve its goal. The parents insist on full escalation, including cardiopulmonary resuscitation at arrest, because they believe a miracle is possible. [11] [10]

Questions

1. Explain why withholding and withdrawing life-sustaining treatment are morally equivalent, and name one practical consequence. (3 marks) [11]
2. Distinguish physiological futility from a value dispute, and state which applies here. (4 marks) [10]
3. Outline the escalation pathway when the team and parents cannot agree, and the role of comfort care throughout. (3 marks) [10] [1]

Model answer

Moral equivalence (3). The consensus position is that withholding and withdrawing life-sustaining treatment are morally equivalent: there is no ethical difference between never starting a non-beneficial treatment and stopping it once begun. The practical consequence is that a treatment already begun should not be continued merely because stopping feels more active; doing so biases practice toward overtreatment and prolongs non-beneficial care. [11]

Futility versus value dispute (4). Physiological futility is a factual claim that the treatment cannot achieve its physiological goal, whereas a value dispute is a disagreement about what an acceptable outcome would be. Here the team and parents likely agree the prognosis is dire but disagree about whether the resulting quality of life is worth living — a value dispute, not pure physiological futility. That distinction matters because a value dispute is resolved through shared deliberation, ethics and the courts, not a unilateral declaration of futility. [10]

Escalation pathway and comfort (3). Bring a second neonatologist and the team to consensus, seek an ethics consultation and mediation, offer a second opinion, and consider a time-limited trial if any uncertainty remains. If consensus still cannot be reached, seek a court declaration rather than overriding the family unilaterally or capitulating to indefinite non-beneficial treatment. Comfort and symptom care are maintained and intensified throughout, never withdrawn. [10] [1]