Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [87]
The principle of nonmaleficence applied to the choice that Ayesha was facing. To accept a liver infected with hepatitis C might be giving Omar a new and serious disease. On the other hand, the diseased organ could save his life. Here, the doctors were navigating between beneficence and nonmaleficence, because transplanting a diseased liver had elements of both. So the physicians returned to the principle of autonomy—they wanted Omar’s surrogate to decide.
That evening, Ayesha called one of Omar’s close friends, a gastroenterologist. “He told me just to say yes to the hepatitis C liver,” she recounted. “I should take anything that comes up. He explained that the surgeon would not propose this if Omar was not in extreme danger.”
Ayesha spent the rest of the night anticipating regret, debating in her mind the answer she would give the surgeon. “I was worried that I would end up giving Omar another disease,” she told us. “Treatment for hepatitis C would be difficult, and then he might need another transplant. It made me feel guilty. But I would have felt guiltier if I had said no.” Ayesha told us, as day broke, that she spent more than an hour crying and then called the surgeon to give her permission. “This was lifesaving treatment—I knew I had to say yes.”
Two more days passed, and, as Ayesha told us, Omar was “hanging by a thread.” She recalled that he had contacted another medical center where living donor transplants were done, and in desperation she called the director of that program. “I wanted to make sure that I’d done everything. I said what if I moved him over there? But the doctor at the other medical center said that Omar was too sick to be transferred, and that once someone was on a ventilator, they didn’t do a living donor transplant.”
Omar’s surgeon understood that Ayesha wanted her husband to live “at all costs.” At this point, for Ayesha, there was no loss aversion, no anticipated regret, no contemplating the potential side effects of attempting to transplant someone with his severity of illness, no real forecasting of what Omar’s life would be like should he survive. “There was no side effect that could be worse than the way he was at that time,” she told us. Every trade-off paled before that reality. “I’m not very religious, but I have faith,” Ayesha told us. She sat at Omar’s bedside, praying and reading verses from the Koran on healing. “I knew that everything was being done that could be done, and everything else was in the hands of God.”
One night in the ICU, she was leafing through a magazine and read an article about Chris Klug, an alpine snowboarder from Aspen, Colorado. In the early 1990s, on a routine physical exam, Klug was found to have a rare liver disease called primary sclerosing cholangitis. At the time, he was at peak athletic fitness, successfully competing at the highest level with no symptoms at all. For years, Klug felt good, although his liver function tests continued to deteriorate. Then he got sick, and his MELD score rose. He was on the waiting list for three months before he received a donor liver. The transplant was successful, and seven weeks after the surgery he was back on the slopes training. In 2002, he took the bronze medal at the Salt Lake City Olympics. “To win a medal after a liver transplant,” Ayesha told us, showed her that “despite how sick someone might be, he might return to a vigorous life.”
This anecdote buoyed Ayesha up. Availability became a source of hope, helping her cope with the harsh reality of Omar’s condition. On a strictly clinical level, Chris Klug’s story wasn’t comparable to Omar’s: Klug’s type of liver disease was quite different, and he hadn’t been nearly as close to death as Omar, who had bacterial and fungal bloodstream infections, kidney failure, internal bleeding, and coma. But reading this vignette helped Ayesha hold on to hope for Omar.
Late in the afternoon of January 17, the surgeon spoke with Ayesha.
“We’re not sure he’ll live another day,” he said.
Ayesha nodded.
She went home late that