Organ Transplantation for Individuals with Neurodevelopmental Disorders.

In 1996, Sandra Jensen became the first person with Down syndrome to receive a heart-lung transplant. Although it took place almost 20 years ago, her experience continues to shed light on contemporary challenges that individuals with neurodevelopmental disorders face in securing access to transplantation. While overt discrimination has decreased, barriers persist in physician referrals, center-specific decisionmaking regarding wait-listing, and the provision of accommodations for optimizing the assessment and medical management of these individuals. These issues arise from the persistent biases and assumptions of individuals as well as those of a healthcare system that is inadequately positioned to optimally serve the medical needs of the growing number of individuals with functional impairments. More data and greater transparency are needed to understand the nature and extent of ongoing access problems; however, long-term solutions will require changes at the healthcare professional, regional transplant center, and national levels.

Addressing Consent Issues in Donation After Circulatory Determination of Death.

Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria (i.e., brain death), there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients.