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An updated AAP policy statement emphasizes the essential role of general pediatricians and other pediatric health care professionals in enhancing comfort with and increasing knowledge of pediatric organ donation and transplantation.

Policy underscores role of medical home in pediatric organ donation, transplantation

July 24, 2023

Organ transplantation is the accepted treatment to improve and extend the life of patients with end-organ failure. However, demand far exceeds supply, and children and adolescents continue to die while waiting for a transplant.

Each year, approximately 1,000 deceased and living children and adults donate organs for pediatric patients, and about 1,700 children and adolescents receive organ transplants. More than 1,900 U.S. children are waiting for a transplant.

An updated AAP policy statement summarizes the latest evidence and emphasizes the essential role of general pediatricians and other pediatric health care professionals in enhancing comfort with and increasing knowledge of pediatric organ donation and transplantation.

The policy Pediatric Organ Donation and Transplantation: Across the Care Continuum, from the Committee on Hospital Care, Section on Critical Care, Section on Surgery and Committee on Bioethics, is available at https://doi.org/10.1542/peds.2023-062923 and will be published in the August issue of Pediatrics.

Role of pediatricians

As trusted partners of children and families, pediatric health care professionals, in conjunction with the medical home, play a crucial role in education and advocacy to promote pediatric organ donation.

Health care professionals should have a general understanding of the donation and transplantation process. This includes the ability to provide follow-up care and support as part of the multidisciplinary care team of members from the medical home, critical care teams and transplant specialists.

Promoting education, advocacy and knowledge can increase organ donation and transplantation opportunities for all children while reducing disparities, including those related to income, race and ethnicity, and intellectual and developmental ability.

Pediatric health care professionals have a unique opportunity to provide anticipatory guidance about organ donation to families, older children and adolescents.

Organ donation

A 2010 AAP policy statement (https://doi.org/10.1542/peds.2010-0081) emphasized the important collaboration between the organ procurement organization and the critical care team as part of the process of organ donation.

Discussions about organ donation often occur during end-of-life care. The updated policy focuses on opportunities to educate patients and families before such events occur, increasing receptiveness to organ donation.

Neonates, children and adolescents may be eligible to donate organs and tissues after meeting criteria for neurologic or circulatory death. The opportunity for organ donation — combined with continued family support following the death of any child — should be considered an integral part of end-of-life care.

Organ transplantation

Patients being evaluated for organ transplantation have unique vulnerabilities and require comprehensive, developmentally appropriate evaluation and psychological support.

Transplantation cannot be treated as a single surgical procedure. The process requires long-term monitoring for the development of comorbid conditions and post-transplant complications. Ongoing collaboration between the multidisciplinary transplant team and the primary care provider or medical home is essential to support all health care needs of the transplant recipient, including routine and emergent transplantation care, health maintenance and continued psychological support.

Ethical, policy implications

Ethical issues are a component of many pediatric guidelines, and organ donation and transplantation are no exception.

Pediatric health care professionals should be well-informed of ethical considerations for organ donation following neurologic and circulatory death and living donation. They also must be familiar with local institutional policies, including legal and regulatory requirements for organ donation.

People who want to become organ donors in the United States must opt in or indicate their choice to donate. Pediatric health care professionals can educate children and families about organ donation and transplantation, which can increase donation rates and help save lives.

Drs. Hittle Gigli and Nakagawa are lead authors of the policy statement. Dr. Hittle Gigli is an assistant professor at the University of Texas (UT) at Arlington College of Nursing and Health Innovation and a pediatric nurse practitioner at UT Southwestern. She is a liaison from the National Association of Pediatric Nurse Practitioners to the AAP Committee on Hospital Care. Dr. Nakagawa is a professor in the Department of Pediatrics, Division of Pediatric Critical Care Medicine at the University of Florida College of Medicine – Jacksonville.

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