When the Seriously Ill Want to Donate Organs

WALL STREET JOURNAL | Amy Dockser Marcus

David Adox, shown with his husband and their son last fall, had ALS and wanted to be an organ donor. But it wasn’t easy to make it happen. PHOTO: EVAN BATHER
Everyone agrees: David Adox’s wishes were clear.

In May, Mr. Adox, 44, an account planner in the advertising field, had been living with the neurological disease ALS for two years. Mr. Adox, who loved bike riding and participated in triathlons, had first noticed weakness in his legs while running to catch a train. The condition—amyotrophic lateral sclerosis, or Lou Gehrig’s disease—robbed him of his ability to move his muscles. Eventually, he needed a breathing tube and a feeding tube, and couldn’t speak. His only form of communication was the use of his eyes, and it was increasingly a struggle to open them.

Mr. Adox told his husband, Danni Michaeli, that he wanted to stop life support and remove his ventilator. He also wanted to donate his organs after he died. That’s when things got complicated.

The effort to fulfill Mr. Adox’s last request highlights the kind of ethical nuances that often mark the process of organ donation, even in cases where individuals are conscious, competent and directly express strong opinions about end-of-life decisions.

The issue of seriously ill people who want to donate organs—either as living donors or as part of an end-of-life decision—is gaining attention, both in the U.S. and in Europe. The ethics committee of the United Network for Organ Sharing, which manages the nation’s organ transplant system, and the Organ Procurement and Transplantation Network is examining the question of terminally ill patients who want to be living donors; a white paper on the topic is expected to be posted for public comment in January. European researchers published a paper this month in the Journal of Medical Ethics looking at cases involving requests for organ donation in Belgium and the Netherlands as part of euthanasia,which is legal in those countries. The paper reported that the procedure has been performed more than 40 times, and suggested legal changes to further facilitate the process. Continue reading
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