Ethics Committee Position Statement

Under the guidance of the International Pediatric Transplant Association (IPTA) Executive Council, the IPTA Ethics Committee was asked to develop a position statement supporting prioritizing pediatric recipients for deceased donor organ allocation. This position statement has been published in the journal Pediatric Transplantation, the official journal of IPTA, on December 5, 2022.
The journal’s editorial staff and publishers have kindly designated the position statement as free content to allow it to be viewed on the journal website without subscription. We would encourage readers to review the position statement in total published

As part of this position statement, IPTA endorses the following policy recommendations:

  1. Within countries or regions that have standardized organ allocation policies, IPTA advocates in favor of prioritizing pediatric recipients for organ allocation. This prioritization should be implemented with acknowledgement of the needs of other stakeholders within the allocation system. IPTA has no singular position on what age threshold should define which potential recipients are considered pediatric patients. Different organs have different age considerations and thresholds. Age considerations should be determined in each jurisdiction and may differ based on the societal norms that differentiate children from adults as well as the technical considerations mandated by clinical constraints. However, the final allocation system should acknowledge the unique benefits experienced by pediatric recipients, the acute need to address pediatric organ failure in a timely manner due to the accrual of significant and sometimes permanent developmental morbidity, and the broader obligations that society has to provide for their health. Within countries or regions where allocation decisions are made by individual programs, we would urge those individuals responsible for organ allocation to consider these factors as well and incorporate those considerations into the allocation process.
  2. Whenever possible, IPTA supports the establishment of transparent, publicly accessible, and formalized allocation systems within local, regional, national and (if applicable) international health systems to minimize disparities in allocation practices that may adversely affect children.
  3. Where technical expertise exists, IPTA supports the use of technical innovations such as split liver transplantation, which will enhance availability of organs for allocation to both children and adults
  4. In order to ensure that these goals are achieved, IPTA recommends the engagement of individuals with expertise in pediatric transplantation in the process of developing and regularly updating local, regional, or national organ allocation policies whenever possible.

Michael A. Freeman, Jean Botha, Eileen Brewer, Mihaela Damian, Robert Ettenger, Katheryn Gambetta, Debra S. Lefkowitz, Lainie Friedman Ross, Riccardo Superina, Mignon I. McCulloch and Tom Blydt-Hansen on behalf the IPTA Ethics Committee

Statement Supporting the Prioritization of Pediatric Recipients for Deceased Donor Organ Allocation

Organ transplant remains the optimal therapy for a wide variety of diseases that affect both adults and children. Unfortunately however, these organs are an inherently scarce resource and as such, developing the most appropriate allocation schema is a challenging ethical question. Prioritization of children for deceased donor organ allocation is implemented in some, but not most jurisdictions internationally. The reasons for this disparity may differ between different transplant centers and health systems. This document will address the clinical and ethical imperatives in support of pediatric priority in organ allocation.

The International Pediatric Transplant Association is a professional organization of individuals in the field of pediatric transplantation, whose goal is to advance the science and practice of pediatric transplantation worldwide, in order to improve the health of all children with end-stage organ failure. Given this expertise, we feel that our organization is uniquely suited to frame and discuss the ethical arguments relating to the need and value of pediatric recipients priority for organ allocation.

As an international organization, we acknowledge that individual arguments for pediatric prioritization must be considered within the context of existing medical infrastructure and social consensus regarding organ allocation in a given health setting. Additionally, we acknowledge a variety of competing ethical principles and concepts guide organ allocation, including understandings of equity and fairness in waiting time, medical urgency for those circumstances in which no suitable support therapies are available, utility in selecting recipients with the best predicted outcomes, and a desire to ensure that the limited resource of transplantable deceased donor organs is used in circumstances where there is confidence that the recipient will derive a meaningful and sustained benefit. As such, while we support the relative prioritization of pediatric recipients for deceased donor organ allocation, the implementation of that prioritization will be different depending on the organ in question, the prevailing allocation process, and on the resource constraints.

In health care environments where prioritization of pediatric recipients for organ allocation is not feasible, due to limitations of economic, social, or medical resources, IPTA supports efforts to address these limitations whenever possible.

This position statement will review a variety of ethical arguments for pediatric prioritization for organ allocation, arguments that reflect the array of underlying values that may influence current organ allocation procedures in a given locale.
1. The medical urgency of organ transplant in the pediatric population

All individuals with organ failure experience related comorbidities that have a profound impact on their health. However, organ failure during critical periods of childhood development result in accrual of additional, irremediable burdens that are unique to children, with major deleterious impacts on growth1, physical and pubertal maturation2, neurocognition3-5, mental health6, and emotional and psychosocial development7. These confer irremediable damage on the chlld as he/she transitions into adulthood. Equivalent morbidity is not experienced by adults who develop organ failure. Additional burdens accrue in the family context, with impacts on parental discord and sibling survivors, which are accentuated during care of end-stage organ failure8. Numerous studies have demonstrated that organ transplantation mitigates these morbidities, improving health and quality of life for pediatric transplant organ recipients across an extended period of time.9,10 Given that developmental impacts are time-sensitive and exacerbated with more prolonged time with end-stage organ failure, delays in organ transplantation in the pediatric population generate a disproportionate degree of morbidity as compared to their adult counterparts.

Prioritizing pediatric recipients for organ allocation represents the most effective means of addressing this disproportionate morbidity, as a matter of medical urgency. Furthermore, failure to address these additional developmental burdens will prevent attainment of a child’s full potential, and lead to lasting disability and impaired participation in society as an adult.11

In circumstances where a lack of health resources limits the availability of other interventions to address organ failure in the pediatric population, such as a lack of access to pediatric dialysis or pediatric cardiac function-assist devices, the prioritization of pediatric recipients for organ allocation is literally a matter of life or death.

2. Increased utility of organ transplantation in the pediatric population

Unfortunately, even when interventions to replace or supplement poor organ function are available, patients who have experienced organ failure requiring transplantation face a significant risk of mortality.12-15 Therefore, in order to improve the utility of each transplanted organ, organ allocation priorities should consider the expected survival of the recipient in the context of the expected functional lifespan of the transplanted organ. By optimally matching organs and recipients, the greatest number of life-years saved can be maximized.

The likelihood of a recipient dying with a functional allograft increases as age increases across a wide variety of organs, and pediatric patients often demonstrate a greater rate of recipient survival than do their adult counterparts.12,16-18 In this sense, the organs allocated to children can be seen to have greater utility, as they are most likely to achieve the ultimate goal of extending the life of as many recipients as possible, for as long as possible.

Attempts to expressly match organs and recipients based on expected longevity are most evident in certain kidney allocation systems, some of which place priority on younger and healthier recipients to receive what are thought to be higher quality organs for allocation. The assessment of organ quality remains in its nascency however, and the means to provide a comprehensive assessment of the potential quality of any organ being allocated is currently limited. Therefore, a purely technical and case specific method of optimally matching organs and recipients is not feasible at this time and policy that considers organ utility in allocation decisions continues to be needed.

In this argument, we acknowledge that due to the differential distribution of the causes of organ failure in adults and children, as well as variation in local resources and expertise, organ transplant in pediatric recipients cannot be presumed to yield a more efficacious outcome in all cases.

Moreover, we acknowledge that clinical constraints may preclude pediatric prioritization, including a lack of technical expertise in pediatric transplant surgery, unfamiliarity with split-liver donation procedures for liver lobe transplantation in children, or the availability of pediatric organ donor programs to enable access to size-matched allografts required for some pediatric heart and lung transplants. In these circumstances, IPTA strongly supports efforts to develop these resources sufficiently to support more effective pediatric transplantation in the future. IPTA stands ready to advise and aid in these efforts.

3. The fair innings argument

The fair innings argument acknowledges that while any premature death represents a tragedy, there is a particular unfairness for those who die having yet to experience what one might consider a “complete” life, including all of life’s stages from birth to old age. Within this argument, the person who dies at a young age has suffered a particular harm beyond a simple quantification of the number of life years lost, and that extension of that life provides a benefit that is qualitatively different that extending the life of an older adult. Therefore, prioritizing pediatric patients for organ allocation allow the greatest number of individuals to experience as “complete” a life as possible, independent of considerations of absolute utility.

This argument seeks to clarify and express the justification for the moral intuition that is shared across a wide variety of community surveys that demonstrate a persistent preference for prioritizing pediatric recipients for organ transplantation.19 Given that the organs available for allocation are in a sense a community resource, deference to this preference would seem appropriate.

4. Societies’ special obligations to children

There is a broad cultural acceptance that societies have a special obligation to their children. This is reflected in the text of the United Nations Declaration on the Rights of the Child, which notes that "the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection"20. This document represents a broad moral acknowledgment that children are owed a degree of care by society that may exceed that which is owed to other members. This cultural norm is manifest in a variety of community structures, including programs that provide educational, financial, and healthcare support to children in need.

In contrast to many adults, the vulnerable nature of children is not only contingent on life circumstances, it is inherent to children as a group. As such, this vulnerability of childhood is additive to the other sources of vulnerability experienced by those suffering organ failure. This in turn serves as an additional justification for pediatric priority in organ allocation, whereby societies have a duty to ameliorate this disproportionate vulnerability.

Given these arguments, IPTA has the following policy recommendations:
  1. Within countries or regions that have standardized organ allocation policies, IPTA advocates in favor of relative but explicit prioritization of pediatric recipients for organ allocation based on the arguments detailed above. This prioritization should be incorporated with acknowledgement of the needs of other stakeholders within the allocation system. However, the final allocation system should acknowledge the unique benefits experienced by pediatric recipients and their families, the medical urgency of their needs, and the broader obligations that society has to provide for their health. Within countries or regions where allocation decisions are made by individual programs, we would urge those individuals responsible for organ allocation to consider these factors as well and incorporate those considerations into the allocation process.

  2. Whenever possible, IPTA supports the establishment of transparent, publically accessible and formalized allocation systems within local, regional, national and (if applicable) international health systems to minimize disparities in allocation practices that may adversely affect vulnerable groups, including children.

  3. Where technical expertise exists, IPTA supports the use of technical innovations such as split liver transplantation, which will enhance availability of organs for allocation to both children and adults

  4. In order to ensure that these goals are achieved, IPTA recommends the engagement of individuals with expertise in pediatric transplantation in the process of developing and regularly updating local, regional or national organ allocation policies whenever possible.

References

1. Rodig NM, McDermott KC, Schneider MF, et al. Growth in children with chronic kidney disease: a report from the Chronic Kidney Disease in Children Study. Pediatric Nephrology. 2014;29(10):1987-1995.

2. Helenius I, Remes V, Salminen S, et al. Incidence and predictors of fractures in children after solid organ transplantation: a 5‐year prospective, population‐based study. Journal of Bone and Mineral Research. 2006;21(3):380-387.

3. Van Dyck M, Proesmans W. Head circumference in chronic renal failure from birth. Clin Nephrol. 2001;56(6):S13-16.

4. Chinnock RE, Freier MC, Ashwal S, et al. Developmental Outcomes After Pediatric Heart Transplantation. The Journal of Heart and Lung Transplantation. 2008;27(10):1079-1084.

5. Wayman KI, Cox KL, Esquivel CO. Neurodevelopmental outcome of young children with extrahepatic biliary atresia 1 year after liver transplantation. The Journal of Pediatrics. 1997;131(6):894-898.

6. Wray J, Radley-Smith R. Longitudinal assessment of psychological functioning in children after heart or heart–lung transplantation. The Journal of heart and lung transplantation. 2006;25(3):345-352.

7. Madden SJ, Ledermann SE, Guerrero‐Blanco M, Bruce M, Trompeter RS. Cognitive and psychosocial outcome of infants dialysed in infancy. Child: care, health and development. 2003;29(1):55-61.

8. Wiedebusch S, Konrad M, Foppe H, et al. Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatric Nephrology. 2010;25(8):1477-1485.

9. Motoyama O, Kawamura T, Aikawa A, Hasegawa A, Iitaka K. Head circumference and development in young children after renal transplantation. Pediatr Int. 2009;51(1):71-74.

10. Anthony SJ, Hebert D, Todd L, et al. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatric transplantation. 2010;14(2):249-256.

11. Broyer M, Le Bihan C, Charbit M, et al. LONG-TERM SOCIAL OUTCOME OF CHILDREN AFTER KIDNEY TRANSPLANTATION. Transplantation. 2004;77(7).

12. Stepanova M, Wai H, Saab S, Mishra A, Venkatesan C, Younossi ZM. The outcomes of adult liver transplants in the United States from 1987 to 2013. Liver International. 2015;35(8):2036-2041.

13. LaRosa C, Jorge Baluarte H, Meyers KEC. Outcomes in pediatric solid-organ transplantation. Pediatric Transplantation. 2011;15(2):128-141.

14. Chambers DC, Zuckermann A, Cherikh WS, et al. The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: 37th adult lung transplantation report—2020; focus on deceased donor characteristics. The Journal of Heart and Lung Transplantation. 2020;39(10):1016-1027.

15. Hart A, Smith J, Skeans M, et al. OPTN/SRTR 2018 annual data report: Kidney. American Journal of Transplantation. 2020;20:20-130.

16. Gaston RS, Fieberg A, Helgeson ES, et al. Late Graft Loss After Kidney Transplantation: Is “Death With Function” Really Death With a Functioning Allograft? Transplantation. 2020;104(7).

17. Wigfield CH, Buie V, Onsager D. "Age" in lung transplantation: factors related to outcomes and other considerations. Current pulmonology reports. 2016;5:152-158.

18. Kwong A, Kim WR, Lake JR, et al. OPTN/SRTR 2018 Annual Data Report: Liver. American Journal of Transplantation. 2020;20(s1):193-299.

19. Tong A, Howard K, Jan S, et al. Community Preferences for the Allocation of Solid Organs for Transplantation: A Systematic Review. Transplantation. 2010;89(7).

20. Assembly UG. Convention on the Rights of the Child. United Nations, Treaty Series. 1989;1577(3).


Full position statement is published in the Pediatric Transplantation Journal

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