Special issues in pediatric deceased organ donation

International practice in pediatric donation is difficult to compare as there are currently no broadly accepted standards for reporting of pediatric donation data. A recent survey of the UK, Spain, and the USA showed that overall pediatric donation rates (in under 18-year-olds) were substantially lower than for adults (details in supplementary material) [1]. Pediatric DCD (pDCD) represented 2.6–32.2% of total pediatric donation, and most organs recovered from pediatric patients were allocated to adults, similar to previous reports [1, 2].

Analysis of available pediatric identification and referral data suggest missed donation opportunities. A large US center recently found that clinicians failed to refer patients to the local donation organization in 23% of withdrawal of therapy cases, with a non-referral rate of 39% for children aged 1 week to 1 month [3]. A report from the UK identified many contributory factors to their missed referral opportunities, including perceived medical unsuitability, and unclear disease processes leading to death [4]. As referral for consideration of donation is the critical first step in the donation process, most organ donation organizations encourage clinicians to refer all children with either neurologic injury that may proceed to brain death or after a decision to withdrawal life-sustaining therapy has been made, regardless of the bedside clinician’s perception of donation eligibility [5].

Once referred, the approach for discussion of donation with the family or surrogate must be carefully planned and performed sensitively. While difficult in actual practice, the goal of the initial approach should be to decouple discussion of donation from delivery of prognostic news. Adequate time should be given for parents to consider their options and the person discussing donation should have a detailed understanding of the donation process. Spanish data suggest that professionals with specialized training present for approach and consent discussions are associated with higher consent rates [6], but these findings are not specific to pediatric patients. Families should never be pressured into a decision, but since families often experience donation as an opportunity to create a lasting legacy after the loss of their loved one, every family should be given the option to autonomously decide if they wish to pursue donation [7].

Parental or surrogate consent—referred to as authorization in some jurisdictions—for pediatric donation has some distinctions from consent given by surrogates in adult donation. Most children have never expressed an opinion on donation and would not be considered competent if they had. Also, since donation does not convey medical benefit to the donor, it cannot comply with a purely medically based definition of best interests for the child, and parental consent recognizes authority to make decisions based on family values, not simply medical benefit. Parental consent authority encompasses the values and welfare of the whole family in a model of family-centered best interests, underpinned by their intimate knowledge of family needs [7].

Brain death in children elicits a neurohumoral and inflammatory response that can lead to hemodynamic instability, temperature dysregulation, and diabetes insipidus [11]. The goals of therapy are preservation of physiologic homeostasis and require expert care in a pediatric intensive care unit (PICU). While most treatments resemble routine PICU care, some therapies are recommended specifically for the pediatric DBD population, including hormonal replacement therapies, typically steroids, vasopressin, and thyroid hormone [11]. The use of vasopressin as a first-line agent for hemodynamic instability with evidence of diabetes insipidus is often recommended. Donor hypothermia has shown promise in adult kidney transplantation [12], but effects in pediatric donors are unknown.

While there has been resistance from a minority of authors to pDCD based on ethical concerns, the current broad professional consensus is that pDCD can be ethically practiced in a manner very similar to adults [13]. DCD kidneys have been recovered from neonates as small as 1.9 kg, and pDCD liver, lung, and pancreas donations with favorable outcomes are well described [13]. Standardization of practice remains difficult with few national or international guidelines [14], though national guidelines specific to pDCD have been developed [15].

The field of pediatric donation needs more and better-quality research to inform practice. Standardized sharing of practices and outcomes using agreed definitions is necessary. Knowledge of the impact of the donation process on families is lacking, and the best ways to educate healthcare providers and the general public on donation issues are unknown. Novel techniques such as normothermic regional perfusion and cardiac DCD are being practiced in adult populations and may represent a means of increasing the number and quality of organs for transplantation. Neonatal donation is also continually evolving. While DBD is a rare event in this population, methods to increase utilization of potential neonatal donors include increased pDCD en bloc kidney transplantation, liver cell transfusion, and the consideration of anencephalic infants for potential donation.

More knowledge in the field will allow clinicians to ensure that all family wishes to donate are honored and that more patients on transplant waiting lists receive lifesaving transplants.