As a member of the Working Group of the Asociación Española de Pediatría (AEP, Spanish Association of Pediatrics) and the Organización Nacional de Trasplantes (ONT, National Transplant Organization) that developed the original document1 and its summary,2 to which the letter refers, I express our appreciation for the interest elicited by its ethical considerations.
Although we are aware that a letter to the editor is not the ideal vehicle to hold a discussion and deliberation about ethics (for either party), we would like to encourage the authors of the letter to read the full text of the recommendations1 and take into consideration that ethical conflicts arise from differences in the values held by the individuals involved in the clinical relationship.3
Our Working Group, taking into account the relevant scientific literature and current Spanish law,4 deliberated on the main ethical aspects of paediatric donation, listening to the group of experts in bioethics of the ONT1 and widespread opinion gathered through public consultation with scientific and professional associations. Subsequently, we considered the possible courses of action, reaching a consensus within the boundaries established by current law.
As regards the letter in response to the article, we must make clear that controlled donation after circulatory death programmes conform to the dead donor rule, as procurement of the organs only starts after the death of the donor has been confirmed. The decision to withdraw or withhold treatment takes place at an earlier stage independently of donation, and circulatory death following this decision is declared based on the criterion of the “irreversible cessation” of cerebral blood flow: return of circulation is not going to occur neither spontaneously (which is guaranteed after a 5 min period) nor artificially (as cardiopulmonary resuscitation is not going to be performed). This is a strict international standard that is scrupulously followed in Spain.
Antemortem measures to improve the donation process and fulfil the wish of families that the donation be a success pose a dilemma that is acknowledged in the document,1 which proposes four requisite conditions: (a) the risks to the donor are minimal and similar to the risks experienced by children undergoing treatment with curative intent; (b) parents are informed and given sufficient time to assimilate the information about the procedure and the opportunity to discuss their concerns; (c) specific informed consent will be obtained for each ante-mortem intervention that needs to be performed, and (d) parents consider donation as an expression of the belief that their child (if the child were able to communicate) and themselves would wish for the organs to be transplanted.2 Thus, the recommendation of the working group of the AEP-ONT is: “Due to the increased risks associated with inserting large-calibre catheters in large vessels young children compared to adults, the insertion should be performed by the organ retrieval team after the death of the child (post-mortem cannulation), thereby eliminating any potential risk to the donor […].”1
When it comes to the ethical considerations in donation in special situations, in particular in newborns with severe neural tube defects with an extremely short extrauterine life expectancy,1 the document stipulates that given the technical and logistic difficulties and the complexity of the ethical dilemmas, in Spain this is an option to be contemplated in the future based on real-world practice already taking place in other countries. Offering donation to the parents of a newborn with a high probability of early neonatal death seems to us a moral imperative to avoid discrimination of these children, allow the family to find peace and look toward the future in light of the legacy of the child’s life. The document underscores that the decision to terminate or continue with the pregnancy will be reassessed based on the values of the family and can always be changed. If the family decides to go forward, health care professionals must facilitate the process of tissue donation (the only option that is currently possible).1
Last of all, the document emphasises the objective of guaranteeing the wellbeing of the potential paediatric donor and the family throughout the entire process and recognises the importance of perinatal palliative care.1,2
From the working group of the AEP-ONT, we recommend the perusal of the original full text,1 which we hope will provide clarification and reinforce the practice of paediatric donation.