The Defibrillation of NOTA: How Establishing Federal Regulation of Waitlist Eligibility May Save Organ Transplant Patients with Disabilities from Flat-Lining – Note by Danielle Richards

From Volume 87, Number 1 (September 2013)

Imagine this: thirty-five-year-old identical twin males are admitted into a hospital for congestive heart failure. Neither twin smokes nor drinks. Neither has other underlying medical conditions. There is, however, one distinct difference between them: at birth, twin “A,” Alex, was delivered normally, but twin “B,” Brian, had his umbilical cord wrapped around his neck, causing oxygen deprivation and resulting in moderate mental disability. As adults, Alex is completely independent, but Brian is not, as he lives with his elderly parents. Both twins are stubborn, but a few times, Brian has reacted especially negatively when placed in new and stressful situations.

The twins have the same doctor who determines that both are equally sick, concluding that each will survive only with a heart transplant. Although it seems Alex can comply with postoperative treatment—first, with help from family and later, alone—Brian may not be able to comply by himself. His parents and his sister, however, are willing to provide Brian with the additional support he needs to comply, such as ensuring he takes his medication, follows other medical restrictions, and attends regular follow-up appointments. If Brian can comply with the postoperative treatment with or without help from his family, the doctor predicts Brian’s long-term prospects for life-prolongation will be the same as Alex’s prospects.

After evaluating the twins, the doctor has to decide independently whether to place each on the national heart transplant waitlist. Knowing the above, what should the doctor decide? Should Alex be placed on the heart transplant waitlist? Should Brian? Should the doctor consider Brian’s mental disability when making his decision? Should it matter that Brian’s parents and sisters have agreed to provide him with additional support?



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