This policy statement aims to enhance comfort and increase knowledge of pediatric organ donation and transplantation to the general pediatric community, specifically focusing on the pediatric health care professional and the medical home. The pediatric health care professional will care for neonates, infants, children, and adolescents who may become donors or transplant recipients and, thus, is a crucial member of the pediatric patient’s care team. Understanding donation, transplantation, and follow-up care are important to primary care engagement. Furthermore, the pediatric health care professional may play a role in shaping public policies related to the process of organ donation and access to organ transplantation.
Background Information
Understanding issues that are distinct to the care of neonates, infants, children, and adolescents who become organ donors or transplant recipients, including the effects on their families, is important for pediatricians. This policy statement addresses organ donation and indications for transplant, the structure of transplant teams, need for both medical and psychosocial support for recipients and their families, and important ethical issues that frequently arise in organ donation and transplantation.
Organ transplant is vital to extend the life of patients with end-organ failure. In 2021, more than 1800 pediatric candidates in the United States younger than 18 years were awaiting an organ transplant.1 Each year more than 1700 children and adolescents receive organ transplants. Many pediatric candidates may need a donated organ from a neonate, infant, child, or adolescent, given organ size and developmental criteria. There are more than 1000 pediatric organ donors in the United States annually.1 Neonates, infants, children, and adolescents of all ages who die can be organ and tissue donors if clinical criteria for donation are met. In 2020, pediatric deceased donors provided 2476 organs for transplant.1 Pediatric living organ donation from 2009 to 2015 was 27% lower than in 1995 to 2001.2 Despite seemingly matched donor to transplant numbers, as of 2021, more than 48% of pediatric patients on the waiting list have been waiting for more than 1 year (48% for kidney, 41% for heart, and 47% for liver).1 Disparities also exist among racial and ethnic groups.3,4 Some children and adolescents will unfortunately die waiting for a life-saving organ transplant, with children younger than 1 year having the highest death rate waiting for an organ transplant.5
Given their trusted relationships with families and adolescents, pediatric health care professionals are well-positioned to help families and adolescents navigate challenges regarding donation and transplantation and are in a unique position to engage in shaping public policy surrounding organ scarcity, procurement, and allocation. It is important for pediatricians to have knowledge of organ donation and transplantation processes and resources, including legal aspects of authorization and assent and familiarity with regional organ procurement organizations (OPOs) and local transplantation centers.6 The goal of this policy statement is to enhance the comfort and knowledge of pediatric health care professionals when caring for children undergoing this process as either a donor or recipient.
Statement of Problem
Pediatric health care professionals may face discussions regarding organ donation and transplantation in multiple clinical scenarios: providing anticipatory guidance about organ donation during well-child visits, providing end-of-life care, referring children and adolescents for organ transplantation assessment, caring for children and adolescents with end-stage organ failure requiring transplantation, or caring for children and adolescents after organ transplantation. This policy statement reviews current evidence and policies on organ donation, transplantation, ongoing follow-up, and ethical issues surrounding organ donation.
New Information
Organ Donation
Organ donation in the United States is predicated on the “dead donor rule”: vital organs can only be removed for transplantation after a person is declared dead following neurologic or circulatory criteria, and recovery of organs cannot result in the death of the patient.7 The opportunity for organ donation primarily occurs after the determination of brain death. In 1981, the Uniform Law Commission released the Uniform Determination of Death Act, which states that death is determined by the irreversible loss of entire brain function including the brain stem or the irreversible loss of circulatory and respiratory function. This model legislation was subsequently enacted as the legal standard in every state. The Uniform Determination of Death Act defined death but left the determination of death to medical providers based on currently accepted medical standards. Accurate determination of death by circulatory or neurologic criteria is essential. Determination of brain death in the United States has been defined in guidelines from the American Academy of Pediatrics (AAP) in conjunction with other medical societies.8,9
When brain death criteria are not met, donation after circulatory death (DCD) can be considered. Controlled DCD has increased the number of pediatric organs available for transplantation.10 Kidneys and liver are commonly recovered from pediatric DCD donors. Patient survival rates after transplantation of organs recovered from DCD donors are comparable to organs recovered from donation after neurologic death.11 The proportion of organs transplanted into pediatric recipients from DCD donors has increased significantly from 9% in 2010 to 20% in 2020. Lungs are also being recovered from DCD donors with good transplant outcomes.1 Emerging technology using regional and ex-vivo perfusion is allowing additional organ recovery, including recovery and transplantation of the heart from DCD donors.12,13
There is increasing potential for neonatal organ donation after neurologic and circulatory death.14–16 Although rare, neurologic death can be declared in neonates 37 weeks’ gestational age or older, and organs, specifically the heart, may be recovered.8 Greater opportunities exist for neonatal DCD, because the majority of deaths occur after withdrawal of life-sustaining medical therapies. Neonatal DCD has resulted in successful recovery of kidneys and the heart in limited instances.17,18 Organs from anencephalic infants after circulatory death have also been recovered and transplanted in rare circumstances.19,20 Infants with anencephaly generally retain brain stem activity and, thus, do not meet criteria for death by neurologic criteria.
There are logistical, technical, and ethical challenges associated with DCD that can affect patients, providers, donor institutions, and transplant centers (Table 1). These issues have been extensively explored by bioethicists, transplant experts, and multiple medical oversight committees, societies, and organizations.9,21–28
Variability of inclusion and exclusion criteria |
Allocation and acceptance of DCD organs for transplantation |
Knowledge and education of the DCD process |
Authorization for donation |
Economics and costs for donors |
Ethical considerations |
Determination of death after circulatory arrest |
Conflict of interest |
Impact on end-of-life care |
Variability of inclusion and exclusion criteria |
Allocation and acceptance of DCD organs for transplantation |
Knowledge and education of the DCD process |
Authorization for donation |
Economics and costs for donors |
Ethical considerations |
Determination of death after circulatory arrest |
Conflict of interest |
Impact on end-of-life care |
The process of organ donation after death requires identifying a potential donor; determining death; obtaining authorization for donation; providing coordinated, family-centered medical care for the donor; and surgical recovery of organs by the transplant team. Consideration for end-of-life care and organ donation can begin when a determination of poor prognosis from a life-threatening injury or illness is identified. Early OPO referral is considered a best practice, allowing the critical care team and the OPO to discuss donation potential and determine an approach to working with the family should donation become a possibility.29 Management of the donor and recovery of organs for transplantation requires a multidisciplinary care team that includes the critical care team with the current treating physician, appropriate medical and transplant specialists, nursing and the critical care team, clinical transplant specialists, pharmacists, spiritual support, and child life specialists.
Organ donation for pediatric patients is a decision made by families in conjunction with the OPO and the medical team. When parents wish to consider organ donation, health care providers can provide psychosocial support and collaborate with the OPO to explore this option. Families might choose to engage their child’s or adolescent’s primary care physician in the decision-making process, and in some cases, family-initiated discussions about donation before death may occur when death is imminent. Although some clinicians might find it difficult to introduce the topic of organ donation, few families of either adults or children or adolescents appear to suffer psychological harm by having the option of donation presented to them.30 Best practice (consistent with regulatory requirements) in approaching parents and families about authorization for organ donation relies on collaboration between the medical team and the OPO.31 Consulting the OPO is important to ensure that opportunities for donation are not lost before ruling out donation based on disease process or injury or individual opinions that the child may not be an acceptable donor. Separating or “decoupling” conversations about death and organ donation is common practice in adult cases. However, parents might prefer earlier discussions about donation to reach an informed decision. DCD requires a distinct separation of discussions about withdrawal of life-sustaining medical therapies and organ donation to avoid any perceived conflict of interest that withdrawal of medical therapies will result in death for the purpose of organ recovery.21
Pediatric health care professionals can offer anticipatory guidance, counseling, and educational information to promote awareness to patients and families about organ donation. This guidance includes being informed about state laws related to donor status on a driver’s license.32 Many families might not have considered the possibility of organ donation, especially for their children and adolescents. Restricting discussions about organ donation to end-of-life care situations foregoes valuable opportunities to educate and support families who may wish to consider this option before facing a crisis when their child becomes seriously ill. Anticipatory guidance during routine health care visits for children and adolescents affords an educational opportunity to provide information and discuss organ donation, as appropriate, at times directly with the older child and adolescent. During late adolescence, from ages 16 to 19 years, youth develop a coherent sense of identity and an increased understanding of their individual beliefs, values, and priorities, which are crucial to reflective, autonomous decision-making such as donation.33 School-based classroom education strategies to improve knowledge and attitude and initiate conversations about organ donation after death provide opportunities for public knowledge and awareness.34 Educational programs focusing on positive social behaviors can foster the charitable nature of adolescents toward donation.35 Understanding relevant sociocultural factors and religious beliefs is necessary to support family discussions, dispel myths, and clarify concerns about the declaration of death and organ donation in a respectful and culturally competent manner.36 This information can provide opportunities for adolescents as they develop autonomy and express a desire to make a voluntary, informed decision to become an organ donor and even educate family members to authorize donation on their state organ donor registry.
Organ Recovery and Transplantation
Federal law established the Organ Procurement and Transplantation Network, currently operated by the nonprofit United Network for Organ Sharing, which serves as the center for procurement, donation, and transplantation, supporting 57 national OPOs and 256 transplant centers.29 OPOs are tasked with coordinating deceased organ donation within a specified geographic service area. Transplant centers receive organ-specific approval to perform transplants and must obtain specific approval for pediatric transplantation programs. Allocation of donor organs is managed by the United Network for Organ Sharing that utilizes DonorNet, a program serving to match available organs with patients on the waiting list. Combined donor and transplant candidate information such as blood type, height, weight, medical information, HLA matching, and medical urgency (including exhaustion of all dialysis access) is considered for optimal matching to rank candidates for an organ offer. The scarcity of organs requires patients awaiting transplant to be stratified based on scoring systems that account for proper organ size, clinical status and medical urgency for transplantation, and geographic location.39
Donors
Viability of donated organs for transplant may be limited based on organ function or disease process. Evaluation of organ function requires laboratory and diagnostic studies to determine suitability of organs for recovery and transplantation. Continued medical evaluation and treatment of the donor may improve liver, kidney, heart, and lung function after critical illness or injury. Cardiac function may require serial echocardiograms to determine response to medical therapy, such as vasopressors and inotropes that can enhance organ suitability for transplantation.40,41 Common contraindications for donation include active metastatic or hematologic malignancy and certain infectious diseases, such as viral encephalitis. Patients with HIV infection and hepatitis can be considered as organ donors. In the United States, liver and kidney recovery from deceased HIV-positive donors have been successfully transplanted into HIV-positive recipients.41 Nonaccidental trauma is not an absolute contraindication to organ donation. These cases require close collaboration between the medical and investigative teams, including the medical examiner or coroner, to ensure an optimal outcome.42–44 It is illegal for organs to be bought or sold in the United States. Families of deceased donors incur no cost related to donation or organ recovery.
Recipients
After organ recovery, a recipient must be identified to receive the transplanted organ. Recipients of organs can include children or adolescents with end-stage or near-end-stage organ failure, and consideration for transplantation requires an in-depth review of medical, family, and social issues. Intellectual or developmental disability does not categorically exclude children or adolescents from organ transplantation consideration. In general, intellectual disability has not been associated with reduced recipient or graft survival, and denying transplantation to people with disabilities may constitute unjustified or unethical discrimination as well as violation of state and/or federal law.45,46 However, considering the impact of the disability on the likelihood of successful graft survival, longevity of the recipient, and quality of life of the recipient at the time of evaluation for transplant candidacy and iteratively after addressing obstacles to adherence to post-transplant medical regimens is ethically permissible.47,48
Successful transplantation requires the support of the recipient’s family and is critical to the success of the transplant. The path to end-stage organ failure varies among families. Decisions and values on which these decisions are based can and will change over time.49 The emotional stress and financial cost of caring for a sick child or adolescent are compounded by other factors related to the regionalization of pediatric transplant programs, which may require displacing the family from their community, requiring travel, lodging, meals, child care, and loss of income.50 Insurance may cover the cost of the organ transplant surgery. However, the financial impact of transplantation with ongoing medical care can result in a significant burden for the recipient’s family.51 Long-term financial considerations are necessary because children and adolescents may reach an insurance cap after organ transplantation. Emotional and financial stressors, both short-term and long-term, not only are the result of existing health inequities but also may contribute to future health inequities. Social workers, mental health professionals, and financial counselors play pivotal roles in the transplantation process in easing these stressors and addressing any existing and future inequities.52,53 Support mechanisms, such as physician advocacy, ambassador programs, and groups organized on social media platforms, may also assist patients and families.
Transplantation Follow-up Care
Advances in transplant medicine have improved allograft function, patient survival, and quality of life.54,55 Organ transplantation cannot be viewed as a single surgical procedure, and post-transplant complications may develop remote from initial surgery. Transplant recipients can develop comorbidities, such as cardiovascular disease, obesity, infection, malignancy, and chronic kidney disease at much higher rates than the general public.56–60
Transplant team members and medical subspecialists within the medical home generally provide ongoing management for the transplant recipient. The chronicity of postoperative care necessitates the primary care provider be knowledgeable of post-transplant medical care. Identifying specific responsibilities of the child’s or adolescent’s primary care and transplant medical teams before transplantation and coordinating postoperative and long-term follow-up care avoids confusion and promotes cohesive medical care. Failure to address complex psychiatric and psychological needs, such as medication adherence from undertreated or untreated psychiatric disorders, family dynamics, cognitive development of the adolescent, and access to care, may lead to rejection and graft loss. Involvement of mental health specialists, including psychiatrists and therapists, may be necessary.61 Routine care including health maintenance visits, evaluation of eligibility for participation in activities such as youth sports, and problem-based care is provided in the primary care setting and requires ongoing awareness of the transplant history and coordination with relevant specialists. Transplant recipients require immunosuppression to prevent rejection and are at greater risk for infection because of their weakened immune systems. Consequently, transplant recipients require immunizations, including COVID-19 vaccination, to help prevent infections.62
As the pediatric transplant recipient ages, addressing issues such as medication adherence and other medical instructions, transition to adult care settings, psychosocial issues, and economic factors is necessary.63 Pediatric transplant recipients’ eventual transition to adult care can be fraught with vulnerability because of insufficient psychosocial readiness and unstable economic and insurance footing.64 These factors emphasize the need for durable and consistent long-term follow-up for pediatric organ recipients by the transplant team and the need for an intentional transition to an adult primary care provider.
Ethical Considerations
Ethical and clinical issues related to neurologic and circulatory death continue to be debated in medicine and society. The contribution of organs from neonates, infants, children, and adolescents after neurologic and circulatory death have increased the supply of transplantable organs while meeting the desires of patients and families to help others through organ donation. The AAP, other medical organizations, and oversight committees consider all forms of donation, including DCD, ethically acceptable when practiced according to current guidelines.9,21–28
High-profile cases related to the definition and determination of brain death have been publicized in mainstream media. Issues include disagreement between the medical team and family about medical treatment, brain death and apnea testing, personal and religious beliefs about death, and accommodation requests for the family.65 Even for those clinicians not involved in the determination and declaration of death, a general understanding of the legal requirements for donation and their ethical underpinnings is essential. Historically, race has impacted donation rates by a higher likelihood of refusing to donate.52,53 Increasing awareness of the impact of race on the perception of donation, medical care, and cultural and religious beliefs and religious groups that have historically rejected the concept of brain death are essential to support families of dying children and their siblings and provide anticipatory guidance for children with life-limiting and end-stage conditions.66 Finally, social media may contribute to confusion about brain death and organ donation by perpetuating false information and anecdotes recounted without medical context or accuracy. These factors have contributed to further mistrust of the medical community.
Recognizing and managing issues related to potential pediatric organ donors requires appropriate planning with an understanding of relevant local, state, and federal laws and regulations.67 Review and update of hospital policies and procedures to determine death based on national guidelines, including need for informed consent for apnea testing, is recommended. Allowing appropriate, clearly defined time for families to grieve with their child after declaration of death is important before somatic support is terminated unless organ donation is planned. An established, standardized approach including triggers for clinical ethics and legal consultation is helpful when disagreement or dispute about determination and declaration of death and termination of somatic support occurs between the family and the medical team.
Premortem interventions and medications to preserve or improve organ viability require consent and cannot result in harm to the patient before donation.21 The process of dying may be undesirably medicalized by donation with the focus shifting from the end-of-life care process to the donation process.34 Importantly, organ donation should be conducted in a manner that is consistent with compassionate and comprehensive patient care at the end of life.
Pediatric patients who have the emotional and cognitive developmental maturity to participate in discussions to donate organs may make a decision, either as living donors or considering the option of organ donation when they obtain their driver’s license. In medical research, the decision-making literature suggests that adolescents possess an adult-level ability to understand basic medical information, to appreciate how a medical decision affects them personally, to reason logically, and to make a choice by 12 to 15 years of age.68,69 Studies of the social brain during adolescence suggest that adolescents are less risk averse than adults and may be more sensitive to psychosocial factors, such as peer influence and emotion.70 These differences in decision-making do not negate the child and adolescent’s decision-making capacity but instead point to areas in which pediatricians can provide additional support.
Living organ donation requires parental authorization for organ donation and is not specifically excluded from parental informed consent to treat minors.71 If a minor wishes to become a living organ donor or if a parent wishes the minor to be a living organ donor, parents may have the authority to override their child’s decision in certain cases of disagreement depending on governing law.72 Parents are encouraged to recognize the interests and emerging autonomy of their child or adolescent by supporting their decision-making ability while balancing the parents’ authority as the natural surrogate decision makers for their children. Complexities and disagreements can also arise when parents, for cultural or other reasons, disagree with their child’s or adolescent’s desire to be a living organ donor. Pediatricians can help families manage conflicts during difficult medical decision-making by focusing on parental responsibility rather than parental legal authority.67
If a child or adolescent refuses to be a living organ donor, criteria for parents to override this decision are much more stringent. Children and adolescents who can engage in discussions about organ donation and refuse or withhold assent may not be forced to donate. Younger children who cannot meaningfully participate in the discussions and the complex medical decision to become a living organ donor require additional protections, such as the engagement of a donor advocate, to protect them from exploitation and conflict of interest. Specific criteria for the ethical permissibility of minors serving as solid organ donors (usually siblings) has been reviewed and supported by the AAP in exceptional circumstances and only when specific criteria are fulfilled.73
Public Policy
The Uniform Anatomic Gift Act is a model law that has been enacted in every state related to organ donation in the United States and promotes opt-in practices for organ donation, allowing individuals to actively choose to reverse the default status of not being an organ donor; opt-out approaches have been used in other countries.23 Although there has been a continued increase in organ donors, in part because of state-led policy innovations to increase organ donation, the supply of organs for transplantation remains insufficient to meet patient demand for organs.73 Importantly, national organizations such as the Centers for Medicare and Medicaid Services, The Joint Commission, and the American Hospital Association have worked to ensure all hospitalized patients who are potential donors are identified to maximize donation opportunities and increase organs available for transplantation.
Increasing awareness through patient and family education remains vital to increase donation rates. Many families might not have considered the possibility of organ donation, especially for their children and adolescents. Pediatricians and other pediatric health care professionals, children’s advocacy groups, and institutions that care for children can promote organ donation in a similar fashion to other opt-in policy initiatives.6,74,75
Summary
Care of children and adolescents who are or have the potential to become organ donors or organ recipients requires an understanding of the medical, practical, social, legal, and ethical aspects of organ donation and transplantation. This policy statement provides guidance for pediatricians and other pediatric health care professionals regarding donation, transplantation, and ways to engage in shaping public policy.
Recommendations
General Recommendations
Pediatric patients, including neonates, have the potential to become organ donors or organ recipients. Therefore, pediatric health care professionals need to be aware of basic and current knowledge of donation and transplantation medicine, ethics, and policies while engaging in practices promoting organ donation to help reduce deaths of patients on the transplant waiting list.
Adolescents and older children should be engaged in discussions about organ donation and transplantation to the extent that their medical condition allows.
Children and adolescents with intellectual and developmental disabilities are not categorically excluded from organ donation or as transplant recipients. Patients should not be excluded from consideration for life-saving organ transplantation solely based on an intellectual or developmental disability. Pediatric health care professionals need to understand and work to reduce and eliminate existing income, racial, and ethnic disparities of organ donation and transplantation.
Children, adolescents, and families of organ donors require support from a multidisciplinary care team, including the current treating physician, appropriate medical and surgical specialists, nursing and the critical care team, child life specialists, spiritual support providers, and other ancillary personnel.
Pediatric recipients of an organ transplant require support from a multidisciplinary care team including the current treating physician, appropriate medical and surgical specialists, nursing and the critical care team, clinical transplant pharmacist, mental health professionals, child life specialists, a financial support team, and a clinical transplant coordinator.
Recommendations for Clinicians Caring for Neonates, Children, and Adolescents Who Are or Might Become Organ Donors
Pediatricians and other pediatric health care professionals should engage families, children, and adolescents during anticipatory guidance and provide education and support about organ donation, as appropriate. Discussions should respect the child’s or adolescent’s emerging autonomy while acknowledging the important role of parents.
Neonates, children, and adolescents across the age spectrum may be eligible for organ donation after death determined by neurologic or circulatory criteria. Pediatric care providers in all settings need to appreciate the importance of maintaining basic up-to-date knowledge of organ donation, transplantation, and relevant ethics. In addition, pediatric care professionals need to be familiar with local institutional policies for donation and understand applicable legal and regulatory requirements.
Clinicians engaged in decisions about organ donation for children and adolescents at the end of life must be aware of and avoid real and perceived conflicts of interest, including those impacted by health inequities, by distinguishing interventions aimed at providing comprehensive, compassionate end-of-life care from those that support organ recovery.
Premortem therapies and medications cannot be intended to hasten death for any reason, and interventions used to preserve organ viability and function require informed consent.
Recommendations for Clinicians Caring for Neonates, Children, and Adolescents Who Are or Might Become Transplant Recipients
Neonates, children, and adolescents being evaluated for organ transplantation have unique vulnerabilities and must receive comprehensive, developmentally appropriate evaluation and support with specific attention to their medical and psychosocial needs.
Neonates, children, and adolescents who have undergone organ transplantation require coordinated ongoing comprehensive care, with a clear delineation of responsibilities between the primary care provider and/or medical home and specialists caring for the child.
Lead Authors
Benson Hsu, MD, MBA, FAAP, FCCM
Alexander Bondoc, MD, FAAP
Alex G. Cuenca, MD, PhD
Kristin Hittle Gigli, PhD, RN, CPNP-AC
Naomi Laventhal, MD, MA, HEC-C, FAAP
Thomas Nakagawa, MD, FAAP, FCCM
Committee on Hospital Care, 2022–2023
Daniel Rauch, MD, FAAP, Chairperson
Tania Fontánez Nieves, MD, FAAP
Samantha House, DO, FAAP
Charles Vinocur, MD, FAAP
Nicole Webb, MD, FAAP
Benson Hsu, MD, MBA, FAAP, Section on Critical Care Member
Melissa Mauro-Small, MD, FAAP, Section on Hospital Medicine Member
Liaisons
Karen Castleberry – Family Representative
Quinn Franklin, PhD, CCLS – Association of Child Life Professionals
Nancy Hanson – Children’s Hospital Association
Kristin Hittle Gigli, PhD, RN, CPNP-AC, CCRN – National Association of Pediatric Nurse Practitioners
Michael Leonard, MD, FAAP – Representative to The Joint Commission
Staff
S. Niccole Alexander, MPP
Section on Critical Care Executive Committee, 2022–2023
Benson Hsu, MD, MBA, FAAP, FCCM, Chairperson
Nicholas Ettinger, MD, PhD, CMQ, CPPS, FAAP, FCCM
Steven Loscalzo, MD, FAAP, Post-Residency Training Fellow Member
Lia Lowrie, MD, FAAP
Elizbeth Mack, MD, MS, FAAP, FCCM, Immediate Past Chair
Margaret Satchell, MD, FAAP
Linda Siegel, MD, FAAP, FAAHPM
Vijay Srinivasan, MBBS, MD, FAAP, Chair-Elect
Liaisons
Michael Agus, MD, FAAP – Pediatric Critical Care Chiefs Network
Shilpa Balikai, DO, FAAP – AAP Section on Critical Care Membership Subcommittee Chair
Nicholas Ettinger, MD, PhD, CMQ, CPPS, FAAP, FCCM – World Federation of Pediatric Intensive and Critical Care Societies
Samir Gadepalli, MS, MD, MBA, FAAP – AAP Section on Surgery
Mark Hall, MD, FCCM – Society of Critical Care Medicine
Benson Hsu, MD, MBA, FAAP, FCCM – AAP Committee on Hospital Care, Committee on Pediatric Emergency Medicine
Melanie Kitagawa, MD, MHA, FAAP – AAP Section on Critical Care Program Chair
Steven Loscalzo, MD, FAAP – AAP Section on Critical Care Mentorship Subcommittee Chair
Elizabeth Mack, MD, MS, FAAP, FCCM – AAP Section on Critical Care Advocacy Subcommittee Chair
Tessie October, MD, MPH, FAAP – National Institute of Child Health and Human Development
Vijay Srinivasan, MBBS, MD, FAAP – AAP Section on Critical Care Quality Subcommittee Chair
Robert Francis Tamburro, Jr, MD, FAAP – National Institute of Child Health and Human Development
Staff
Sue Tellez
Section on Surgery Executive Committee, 2022–2023
Cynthia D. Downard, MD, FAAP, Chairperson
Kenneth William Gow, MD, FAAP, Immediate Past Chair
Elizabeth Beierle, MD, FAAP
Marybeth Browne, MD, FAAP
Katherine Flynn-O’Brien, MD, FAAP – Early Career Liaison
Barbara Gaines, MD, FAAP
Saleem Islam, MD, MPH, FAAP
Danielle Walsh, MD, FAAP
Regan Frances Williams, MD, FAAP – Early Career Liaison
Staff
Vivian Thorne
Committee on Bioethics, 2022–2023
Naomi Tricot Laventhal, MD, MA, HEC-C, FAAP, Chairperson
Gina Marie Geis, MD, MS, FAAP
Deborah Loeff, MD, FAAP
Kelly N. Michelson, MD, MPH, FAAP
Mary A. Ott, MD, MA, FAAP
Consultant
Nanette Elster, JD, MPH
Liaisons
Kavita Arora, MD, MBE, MS – American College of Obstetricians and Gynecologists
Douglas S. Diekema, MD, MPH, FAAP – American Board of Pediatrics
Maria McGee, MD, MPH – American Academy of Child and Adolescent Psychiatry
Staff
Anjie Emanuel, MPH
Policy statements from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and external reviewers. However, policy statements from the American Academy of Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.
The guidance in this statement does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
All policy statements from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.
This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.
Comments
Re: Misleading statements about children as living organ donors
1. Ross LF, Thistlethwaite JR Jr; Committee on Bioethics. Minors as living solid-organ donors. Pediatrics. 2008;122 (2):454–461
Misleading statements about children as living organ donors
First, the authors write that “pediatric living organ donation from 2009 to 2015 was 27% lower than in 1995-2001”. While this is correct, the Organ Procurement and Transplantation Network database reports 20 living pediatric organ donations in 1995-2001 and only 14 between 2009-2015.[1] So we are talking about 2-3 donations per year and a difference of 6 organs.
It is important for pediatricians to know who these minors are. Some of the minors who serve as living organ donors are domino donors. An example of a domino donor is a child with maple syrup urine disease (MSUD) who undergoes a deceased donor liver transplant to treat their enzyme deficiency. Rather than discard the explanted liver, it is transplanted into an adult who might otherwise not survive on the waitlist. Since the adult can produce the missing branched-chain amino acid enzyme in other parts of their body, the enzyme defect in the liver is tolerable. So, while the minor is a living liver donor, it is only because the liver would otherwise be discarded. Consent of the parent (and possibly the minor) to use the domino organ is essential. Second, some of the minors who serve as solid organ donors are living donors for their own children. An adolescent parent is an emancipated minor and can give her own informed consent to serve as a living organ donor, and she does not need her parent’s permission to do so. This leaves only a handful of non-emancipated healthy minors serving as living organ donors in each period.
Second, the authors cite the 2005 AAP statement “Minors as Living Organ Donors” [2] (I was first author) to claim that “Specific criteria for the ethical permissibility of minors serving as solid organ donors (usually siblings) has been reviewed and supported by the AAP in exceptional circumstances and only when specific criteria are fulfilled.” Although some countries had an absolute prohibition of minors as living donors,[3] we argued for only a relative contraindication and stringent safeguards because we acknowledged that there may be exceptional circumstances.[2] We specifically rejected identical twins as a routine exception.[2] Given accumulating data about the long-term health risks of living kidney donation,[4] the AAP should take an even stricter stance.
Third, the current statement only mentions a living donor advocate (LDA) to support a child who cannot meaningfully participate in donation discussions.[1] Since 2007, LDAs are required for all potential living organ donors.[5] Thus, all children who are potential living donors must have an LDA, supplemented by professionals skilled in child development and child psychology when appropriate.[2] However, children unable to meaningfully participate in donation discussions must be excluded from solid organ donation.[2]
Except in very rare circumstances, minors should not serve as living organ donors.
REFERENCES
1. Organ Procurement and Transplantation Network (OPTN) National Database. On the web at: https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/. Last accessed July 25, 2023
2. Ross LF, Thistlethwaite JR Jr, and the American Academy of Pediatrics Committee on Bioethics. Policy Statement: Minors as Living Solid Organ Donors. Pediatrics. 2008;122: 454-461.
3. Thys K, van Assche K, Nobile H, et al. Could minors be living kidney donors? A systematic review of guidelines, position papers and reports. Transpl Int. 2013;26:949-960.
4. Lentine K. Kidney transplantation in adults: Risk of living kidney donation. UpToDate. June 2023. https://www.uptodate.com/contents/kidney-transplantation-in-adults-risk-of-living-kidney-donationLast accessed July 25, 2023.
5. Health Resources and Services Administration, Advisory Committee on Organ Transplantation. Summary Recommendations. On the web at: https://www.hrsa.gov/advisory-committees/organ-transplantation/summary-recommendations. Last accessed July 25, 2023.