Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [86]
When considering the patient’s life story, both surrogates and physicians may find helpful the framework that we’ve already outlined for identifying one’s own preferences, how they arose, and what has shaped them: the attitudes and values of the family, prior medical experiences, encounters with others who may have faced similar conditions and made choices. Of course, there may be gaps in this secondhand narrative because only the patient could tell the full story. But even parts of the narrative might help surrogates and physicians better understand the patient’s preferences and mind-set.
With each day, Omar’s MELD score rose until he reached a level where death was predicted to be likely and soon. “If there’s someone you need to tell about Omar’s condition,” the ICU doctor said, “I think now is the time to call. We don’t know how much longer he will live.”
Ayesha sat frozen for a long moment. Until then, she hadn’t really absorbed the severity of his condition. “At that point, it started really hitting me,” she told us. Ayesha called one of Omar’s brothers who was a physician. He said that he would come as soon as he could. “But he told me that I was the one who had to make decisions,” Ayesha said. “And that was really difficult for me. Because the burden was entirely on me.”
Each day Ayesha spent long hours in the waiting room, looking for what she termed a “streak of hope” that Omar would improve and a liver would become available. “Every hour the doctors had to treat one problem after another, doing all sorts of things, changing intravenous lines, tubes, the dialysis, trying to get the infection under control.”
After two weeks in the ICU, he was still in a coma, and his kidneys produced hardly any urine. Although the bleeding had stopped and the infection was under control, Ayesha knew that his condition was dire. “At first they told me that because Omar was young and strong, they wanted to wait to make sure they got a good liver. Then, the transplant surgeon came by to speak with me. ‘So far, we haven’t been able to get a liver,’ he said. ‘If one becomes available, even if it’s infected with hepatitis C, we would need to transplant it because we’ve reached a point where we don’t know if he will survive one more day.‘”
Ayesha asked him, “But what does that mean to give Omar a diseased liver?”
“It could be lifesaving,” the surgeon said. “It doesn’t mean that he would be sick immediately, but he would need to be treated for that virus, which isn’t simple, and the donated liver could deteriorate. He might have to be transplanted a second time.”
The doctor paused, then added, “We need to know whether you would agree that we should go ahead under those circumstances.”
Ayesha was stunned. “I have to think about it,” she replied after a moment.
Here, decision making shifted back from the doctors to Ayesha as the surrogate.
Besides autonomy and beneficence, ethicists and lawyers have identified another principle that can apply to medical decisions: nonmaleficence. Put simply, this means not inflicting harm. The dictum “First do no harm,” attributed to Hippocrates, is a foundational tenet of Western medicine and dates back millennia. The principle can be invoked when patients or surrogates assert their autonomy and request treatments that the doctor believes have little or no benefit and might well be harmful. In such settings, ethicists and lawyers contend that the physician can refuse to participate in practices he