Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [83]
“We’ll be with you, no matter what you decide,” the surgeon assured him. “If you choose to go with another center, we understand. But if you stay with us, I promise you, we are committed to you and to every one of the people we care for.”
“Thank you,” Omar said. “I understand.”
As Omar continued his research, the choices before him seemed only to multiply. He learned about the “living donor” liver transplant, a procedure begun in 1998 that has become increasingly used because of the scarcity of livers from deceased donors. In this procedure, a healthy person matched for blood type has part of his liver removed; the excised part of the organ is then transplanted into the recipient. There are small but significant risks to the donor, but in most cases the procedure is safe. Very rarely, complications have resulted in the donor’s death. Omar’s medical center didn’t perform living donor liver transplantation, so he contacted another medical center where these transplants were done.
A senior surgeon there reviewed Omar’s medical records, then they spoke by phone. “You have a very high MELD score,” the surgeon said. “And we really don’t like to do living donor transplants with scores this high. But the notes say that you’re still working.” Omar replied that indeed he was and that everyone who knew him was surprised that he felt as good as he did and could keep working despite the deteriorating liver and kidney function tests. “In that case, living donor transplantation may be an option for you if you have a match,” the surgeon concluded.
Omar was aware of the risks to the donor who gave part of his or her liver: “I initially refused to have anybody from my family be a donor. It’s a risky surgery. I didn’t want to drag anybody down with me.” Ayesha pleaded with him to let her donate part of her liver if she was a good match. But he refused. “At least our son should have one of us around.” Many of Omar’s relatives insisted they be tested as potential donors. Two of them were genetically compatible, and each volunteered. But their subsequent medical evaluations revealed that one, who was a heavy smoker, had heart disease, and the other had an inherited abnormality in a clotting protein, making the risk of bleeding from major surgery very high.
“So I realized my transplant options were limited,” Omar told us. “And I began to follow the waiting lists at different medical centers, and track data about which states had the most available organs. I wondered whether I should move to a different state; it might save my life.”
Working late one Sunday night to finish his grant proposal, Omar developed chills and a high fever. He was admitted to the hospital and found to have an infected cut on his foot that had allowed bacteria into his bloodstream. He stayed in the hospital for a week to receive antibiotics. Ayesha arranged for a neighbor to look after their son and spent every evening at Omar’s bedside. The transplantation team, including the senior surgeon, saw him every day during this hospitalization. Omar was impressed by how thorough and attentive they were and decided that he would have his transplant done with this team.
Based on his research, Omar knew it was likely he wouldn’t be able to make decisions himself through the course of transplant. When patients lose the ability to make medical decisions, the surrogate decision maker may be called on to make what is termed a “substituted judgment,” identifying the decision that the patient would have made if he’d been able to do so. The concept of substituted judgment was established in 1976 with the famous court case of Karen Ann Quinlan. The New Jersey Supreme Court designated her father as the surrogate decision maker since she was in a persistent vegetative state; the charge from the judge was to make a health care decision for her in a way that reflected how she would have made that decision herself if she was able.
Since then, substituted judgment has been the