Case 2. Pediatric case (parental refusal)

1. What is the clinical situation?

This case is inspired by a widely known pediatric case involving an infant born with a rare and severe genetic condition that caused progressive brain damage and muscle weakness. The child was unable to breathe independently and required life-sustaining support. Physicians determined that available treatments offered no realistic chance of improvement and would likely prolong suffering without meaningful benefit.

The child’s parents, however, requested continued treatment and sought experimental options abroad, believing that any chance, however small, was worth pursuing. Physicians believed that further intervention would not improve the child’s condition and recommended withdrawal of life-sustaining treatment. The disagreement led to legal involvement, with courts asked to determine what course of action served the child’s best interests.

2. What are the ethical issues?

This case raises a central ethical conflict between parental authority and the physician’s obligation to act in the child’s best interests. Parents are generally granted wide discretion to make medical decisions for their children, yet that authority is not absolute. When continued treatment offers no medical benefit and may increase suffering, the ethical justification for parental decision-making becomes contested.

Another ethical issue is whether hope alone is a sufficient reason to continue treatment when medical evidence suggests futility. The case also challenges how uncertainty should be weighed when experimental treatments exist but lack credible evidence of benefit.

3. Who is affected?

The child is most directly affected, as the decision determines whether treatment continues or is withdrawn. The parents are deeply impacted, emotionally and morally, as they attempt to act in what they believe to be their child’s best interests. Physicians are affected as professionals responsible for providing care that aligns with ethical standards and medical integrity. Courts and the public are also involved, as such cases shape legal precedent and societal expectations regarding parental rights and medical authority.

4. What options exist?

Physicians may continue life-sustaining treatment in accordance with parental wishes, despite believing it offers no benefit. Treatment may be withdrawn if it is determined that continued intervention is not in the child’s best interests. Alternatively, care may be transferred to another institution willing to pursue experimental treatment, if legally and medically permissible. Each option involves ethical risk, emotional burden, and potential harm.

5. What decision is ethically justifiable?

Withdrawing life-sustaining treatment can be ethically justifiable when continued intervention offers no meaningful benefit and may prolong suffering. In pediatric cases, the physician’s obligation is not to honor parental wishes at all costs, but to advocate for the child’s welfare when parental decisions risk harm. While deeply painful, limiting treatment can reflect respect for the child’s dignity and acknowledgment of the limits of medicine. In such cases, ethical responsibility requires physicians to act in the child’s best interests, even when doing so conflicts with parental desires.

Reflection

This case illustrates that ethical medical decisions involving children are uniquely challenging because the patient cannot speak for themselves. It demonstrates that parental love and medical judgment, while often aligned, can come into conflict when hope confronts medical reality. For future physicians, this case emphasizes that protecting a child’s best interests may require difficult conversations, moral courage, and a willingness to accept responsibility for decisions that cannot satisfy all parties.