Initially, W.B. had assumed that he would arrange for his organs to be procured when he died, but then he read that kidneys from a living donor work better and last longer than kidneys from a deceased donor. For one thing, the death process takes a toll on organs, between the decreased flow of blood and oxygen and the release of inflammatory proteins. For another, kidneys that are removed after death inevitably endure “cold time”—when they are outside the body, on ice, without any blood flow at all.
“Why not fork out a kidney before it becomes compromised by all the meds I am taking?,” W.B. asked us when we met him in June. But he didn’t stop there. Beyond a kidney, he explained, he wanted to donate the rest of his organs once his condition deteriorated so much that he could no longer breathe on his own.
W.B. spoke calmly about his situation, and about how ALS “steals your ability to do things”; already, he told us, “I have a hard time getting a spoon from a bowl to my mouth.” He knew that in the near future he would be confined to a bed or a wheelchair. As for the end of his life, he remarked that he could only “look forward to suffocating.” When he said this, he didn’t seem sad so much as at peace with his coming death. “It is what it is,” he said. “I can’t change it. I probably won’t be here in five years. To be honest, I may not be here in two years.”
W.B. hoped to turn his tragedy into someone else’s miracle. But although his mind was clear and his intentions unmistakable, we had no choice but to disappoint him.
Two major obstacles have prevented us from helping W.B. The first concerns his desire to donate a kidney while he is still alive. In his weakened state, will he tolerate the anesthesia and surgery? Or will they hasten his death? If he survives the surgery, will he ever leave the hospital?
As doctors, we have sworn to do no harm. And yet, every Wednesday and Thursday morning, we remove kidneys from living donors. These patients are not getting any medical benefit from donating one of their kidneys—to the contrary, they are accepting a small risk of complications, including hypertension and a slightly increased likelihood that their remaining kidney will fail. But they do experience a very real, if intangible, benefit: the experience of saving someone’s life.
In evaluating W.B.’s request, we had to weigh carefully not only the risk to him—which W.B. clearly understood—but also the risk that a donor death after surgery would pose to our hospital. Transplant-surgery programs in the United States are scrutinized by an alphabet soup of federal and nongovernmental entities. Centers with worse-than-expected transplant outcomes can be placed on probation or shut down. A single bad outcome involving a living donor can lead to an investigation. While there are good reasons for this monitoring, it can cause surgeons to avoid complicated cases and innovation. If we were to remove one of W.B.’s kidneys, and he died one, two, or even six months after surgery, his death would be a very public black mark on our program.