Letter: Rethinking Pediatric Palliative Care and Organ Donation: From Critical Questions to New Opportunities

Dear Editor:

Over the past decade, the population eligible for pediatric palliative care (PPC) has steadily increased, with recent estimates indicating that approximately 20–21 million children worldwide require such care annually, many of whom need specialized PPC services. ¹ These patients comprise neonates, children, and adolescents with complex, life-limiting conditions that are not amenable to curative treatment. Their survival frequently depends on life-sustaining technologies, while they remain at persistent risk of clinical deterioration and death.

In this context, the intersection with organ donation constitutes an emerging and underexplored domain. A growing number of families express the desire to pursue organ donation following the anticipated death of their child. Even though this practice offers clear potential to improve survival among other pediatric patients, it also poses significant clinical, organizational, and bioethical challenges. ²

Pediatric organ donation remains limited compared with adults. In the United States, pediatric donors account for only 5%–7% of all deceased organ donors, with Europe showing an even lower percentage (2%–4%).^3–4 This disparity is inherently tied to underlying demographic factors, as pediatric mortalities represent an exceptionally small fraction, corresponding to approximately 1%–2% of total annual deaths in these high-income regions. ⁵ Nonetheless, organ donation should be actively supported, appropriately proposed, and carefully managed in suitable cases.

Within PPC, end-of-life care is tailored to prioritize the patient’s comfort and involves a deliberate limitation of invasive interventions, with patients often dying at home or in a pediatric hospice rather than in an intensive care unit. Although this approach may not significantly affect the feasibility of donating certain tissues or organs with lower perfusion requirements, different considerations apply to transplant-critical solid organs—such as the heart or the lungs—whose viability is highly dependent on ongoing perfusion and physiological support. In these cases, the absence of systematic clinical monitoring and supportive measures, as occurs in the PPC setting, may negatively impact graft quality and potentially compromise the overall success of the donation process.

An additional ethical concern involves the fact that requests for organ donation are often framed by parents’ desire to honor their child’s life, find meaning in the illness, and leave a legacy. However, the child, as a minor, does not generally participate in the decision.

This raises a relevant question: How can organ donation be facilitated within the framework of PPC in a way that honors the child’s needs and family’s preferences—including the place of care and intensity of end-of-life interventions—without impairing the suitability and safety of organs for transplantation?

Addressing this issue requires enhanced operational collaboration and shared ethical decision-making between transplant teams and PPC services. This partnership should implement strategies that facilitate organ donation, such as timely and transparent communication with families about realistic options, together with safeguarding the fundamental principles of compassionate care and preserving the child’s dignity at the time of death. Attention must also be given to the child’s role in the donation process and to the extent to which their perspectives can guide therapeutic decisions aimed at maintaining the integrity of organs intended for transplantation.