Decisions

The meeting was almost an hour late starting. The senior doctor started out by explaining the situation carefully, making sure everyone assembled understood each part - the kidney failure, the weak heart, the low blood pressure, the need for assistance breathing. His uncle took the lead for the family, which seemed like a familiar role. He asked the questions, and then the aunt chimed in with a few. His mother stayed silent. I could hear in the questions that they were searching for hope, a situation in which he would recover. "In your experience, what happens to patients in this situation?" "I don't have a crystal ball, but individuals in his situation die," he said bluntly. "His heart was already weak, and now it requires this strong medicine. The only cure would be a transplant but because he wasn't consistent with taking his medicine and going to dialysis, that's not an option. He could stay like this in limbo, until another complication like an infection or a blood clot comes along. You have to think about whether he would value being in an ICU where this was the only option, being stable in critical condition. We don't have treatment that will kept him out of this." The uncle seemed to be grasping the situation. "I do understand," he said, "why looking at the data.... I don't want him to comtinue to suffer, with his body breaking down." "In my 25 years of practice, the outcome if someone survived a situation like this would be severe physical disability. There was some discussion about what would happen if he remained like this, about moving him to a nursing home for 24 hr care. The social worker stepped in. "There aren't many nursing homes that would take a patient this complicated," he said "and he would be vulnerable to infections and skin breakdown." His aunt asked me if he had anything written wishes. I explained that the client, who had very limited writing skills, had not but that in recent months he had asked to go to hospice at times, twice said he wanted to kill himself and made as much of an attempt as possible in the hospital, and told me how tired he was of struggling. The part about being tired seemed to affect his uncle. "He was always a fighter," he said. "For him to say he was tired..." Right at that moment, a code was called for another patient and the doctor excused himself. The social worker, Sean, tried to keep the meeting going. "Sean," I asked, "do we know anything about the status of his brain after all this?" "You'll have to ask the doctor when he comes back." I wanted to introduce the idea that even if his body were to magically recover, the man we would be left with might not be the man we knew. The meeting degenerated in anxious chatter, then the social worker suggested we break and reconvene when the doctor returned. Privately, he said to me that he felt like they were getting overwhelmed and needed a break. The doctor came back, and I asked about his brain. The brain is complicated and hard to assess in this situation, but he did say that when not sedated he had been able to respond to simple questions, but became agitated and started reaching for the tubes to pull them out, so they had to put him back under. "I think if we stop the sedation he will be able to answer basic questions but will not be capable of complex decision making," he said. The meeting did not last much longer. The uncle deferrred to his mother, who still had not expressed an opinion. They asked for two more days to think it over, and then requested that the rules be relaxed so more people could visit at once. Between us, Sean and I agreed that they seemed to be getting ready to bring people in to say goodbye. Technically, as his proxy, the decision is mine to make, but two days won't make that much difference and it will be worth it if it allows his mother to come to grips with the decision. If they were determined to keep him going, I would fight for him, but it doesn't seem like it will be necessary. I had kept my tone calm throughout the meeting, but for some reason I said to Sean that he had really loved going to his aunt and uncle for thanksgiving. I started to tell him about the duck, then could not continue. I set down the phone, and Misty said, tearing open a fresh box of tissues, "my grandmother is in a nursing home and I see what the other people are like and he would not want that." With a full schedule ahead of me of meetings and personnel issues and clients, there was nothing to do but take a breath, turn to a fresh page in my notepad, and settle in to wait for their decision.