Abstract
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Thin, frail, fed by a feeding tube, and with contractions of his arms and legs, Dave (real names have not been used; the story is a composite) looked nothing like the healthy construction worker he was before the accident. Our palliative care team was consulted three admissions ago by the medicine team that admitted him. “It's so frustrating. … they just keep wanting him to get treatment, but he'll never get better” said the intern. I met with Dave and his wife. Sandra worked a full-time job and had the responsibility of raising their three children, aged 5 to 12, on her own since Dave's accident. Despite this, she visited him at the nursing home every day.
Sandra was tired. On every admission, she received the same questions from the medical team—“Why are you doing this? He'll never get better”; “Do you think he would want this?” —in an effort to shift his care to a more “comfort focus,” that is, not treat the infections, and let him pass. Each time, a new group of doctors asked the same questions, and each time she said the same thing. She did not think he would want to live like this, but she could not make the decision to stop. Her children still had hope he would get better. And, despite knowing he would not, she also hoped.
But the main issue was that Dave's mother did not want anything to change. She felt Dave would get better and Sandra could not go against her mother-in-law's wishes. Anger with Sandra arose when she suggested that possibly it was time to “let Dave go.” She said her mother-in-law told her she was “trying to kill him.” She said her mother-in-law rarely visited Dave at the nursing home, and did not come to the hospital for family meetings the doctors held each time with Sandra. Her mother-in-law lived on the reservation many miles away, not in the city where Dave, and now Sandra and their kids, lived. After the accident, Sandra moved to be close enough to visit Dave each day, uprooting her family from the support of their community. Things were very tense between Sandra and Dave's family. Sandra stated to the new team at each admission that she would not go against her mother-in-law's wishes.
So each time Dave was admitted, we visited with Sandra, offered support and continuity from admission to admission, and allowed her the opportunity to share how hard this had been for her and her family. We explained the situation to the teams, who stopped trying to push a plan on Sandra she could not accept.
This time, we weren't notified that Dave was in the hospital until he'd been inhouse almost 2 weeks. He developed a serious infection (meningitis) and was in the ICU. He had recently developed aspiration pneumonia, which was not improving despite antibiotics and pressors to support his blood pressure. His liver and kidneys were failing. He was dying. When I found out, I went to visit.
“You need to tell us what's going on! It isn't right that you doctors don't tell us. She's his mother and cares about him, and you doctors aren't telling her anything!” Sandra yelled when I entered the room.
“Sandra, it's me, Dr. Marr, don't you remember me?” I said, perplexed at her behavior, since our meetings had been so cordial in the past. “I just heard that Dave was in the hospital, and came to see how he was doing,” I said. “You doctors round and never tell us anything” she yelled. Still surprised, I introduced myself to Dave's mother who stood quietly at his bedside. She was dressed in traditional Navajo clothing, and said nothing in response. I gave her my hand, gently, and she touched it gently, as is traditional. But I was flustered. “I'm sorry Sandra, but I haven't been here. I'm not sure what the doctors have or haven't done, but we can get them here to talk to you. I'm sorry they haven't kept you informed.” I thought it strange that after 2 weeks no one had spoken with the family. I wasn't sure why she was so upset with me.
After a few seconds, it occurred to me what was happening. I turned toward Sandra, away from her mother-in-law, and asked quietly, “Have the doctors told you what's going on Sandra?” “Yes,” she said quietly, still trying to keep her body posture toward her husband and mother-in-law. “Are you doing this because you want me to tell your mother-in-law what's happening, and the doctors have been asking you to tell her?” “Yes” she said quietly. “Does your mother-in-law speak English, or only Navajo?” I asked. “Navajo,” she replied. The team had been using Sandra as the interpreter for her mother-in-law, putting her in the position to break the bad news. This was not new, despite having a Navajo interpreter at the hospital. Doing this over and over again for 3 years had made her a target in the family and source of blame herself, since she always had bad news to bring. Now that her mother-in-law was at the hospital, she wanted the doctors to do it, to take the burden off of her. It was crucial at this point that her mother-in-law did not believe she was relaying false information or making decisions to end Dave's life. Sandra needed to be seen as a member of the family, strongly advocating for Dave and his mother, and she needed our help to do it. Because the news was worse this time, she needed to pretend that she did not know what was going on, so the news could be delivered fresh, from the doctors, without her as the middle person.
I told her I was going to get a Navajo interpreter to help with the conversation and stepped out. A few minutes later we returned, and all sat. Through the interpreter, I introduced myself and Dave's mother introduced herself. I asked her what she understood about what was going on with Dave, and she said she could see he was very sick. I apologized that no one had told anyone in the family what was going on. I told her I had met her son on prior admissions, and had met Sandra as well. I explained that Dave was sicker this time than on other times. I explained that despite what the doctors were doing, he was not improving. I told her that other patients I have cared for with Dave's illness did not do well. I told her I was sorry this was happening.
Dave's mother cried. She asked if there were other things to do to help him get better, and I let her know I had spoken with his doctors who did not feel they had other treatments that would help fix his condition. She said that despite how sick Dave had been she was always hopeful he would get better and be the son it was clear she loved so much. She said she thought this time things were different, because he was getting worse, and that's why she came to the hospital. She said she did not want Dave to suffer. I told her the best we could do for Dave now was to keep him as comfortable as possible, and support him and his family. I reassured her we would make sure he did not suffer. She said she appreciated all that had been done for him.
Dave was moved to a private room, and received very attentive care from the medical team and nurses in the days before he died. Two cots were moved into his room, one for Sandra and one for his mother to stay with him around the clock, which they did. Other family members including their children came to visit and be with Dave. The medical teams were very careful to direct discussion to Dave's mother with an interpreter during conversations with the family, as the eldest woman in the room and the decision maker. Sandra sat quietly during the discussions, respectful of her mother-in-law, back in the fold of the family, holding Dave's hand.