Barriers to live and deceased kidney donation by patients with chronic neurological diseases: Implications for donor selection, donation timing, logistics, and regulatory compliance

Abstract

Live and deceased kidney donation by the numerous patients with advanced, progressive systemic neurological diseases, and other chronic neurological conditions (eg, high C‐spine injury) remains largely unexplored. In a review of our current clinical practice, we identified multiple regulatory and clinical barriers. For live donation, mandatory reporting of postdonation donor deaths within 2 years constitutes a strong programmatic disincentive. We propose that the United Network for Organ Sharing should provide explicit regulatory guidance and reassurance for programs wishing to offer live donation to patients at higher risk of death during the reporting period. Under the proposal, live donor deaths within 30 days would still be regarded as donation‐related, but later deaths would be related to the underlying disease. For deceased donation, donation after circulatory death (DCD) immediately following self‐directed withdrawal of life‐sustaining treatment (“conscious DCD”) is not universally covered by existing DCD agreements with donor hospitals. Organ procurement organizations should thus systematically strive to revise these agreements. Obtaining adequate first‐person consent from these communicatively severely impaired patients may be challenging. Optimized preservation and allocation protocols may maximize utilization of these DCD kidneys. Robust public debate and action by all stakeholders is necessary to lower existing barriers and maximize donation opportunities for patients with chronic neurological conditions.

Amyotrophic Lateral Sclerosis with a Priority Request for a Postmortem Kidney Donation to a Relative

“…In the case of patients with ALS, the decision-making capacity of the patient is preserved until the final stage of the disease. Thus, respect for the patient's autonomy is particularly emphasized, as shown in previous reports (6). However, as the disease progresses, ALS patients lose the ability to communicate using language.…”

“…Because the cause of death is often pure respiratory failure, the candidate organ is likely to survive transplantation. Therefore, although very few reports of organ transplantation in patients with advanced neurological diseases have been published, ALS is expected to be one of the most common cases in which organ donation is considered ( 6 , 7 ).…”

“…Table lists the reports on organ donation by ALS patients that we retrieved. All of these reports are from outside of Japan, and most of them are kidney transplants after euthanasia or death after the cessation of life support ( 6 , 7 , 9 - 11 ). Transplants after spontaneous cardiac death, as in the present case, have not been previously reported.…”

“…It currently has no treatment. Only a few reports of organ transplantation involving patients with ALS and other progressive neurological diseases have been published ( 6 ).…”