The call came out of the blue. “My mom has A-fib and they aren’t going to do anything about it.” She said it in one big gulp of words.
I was in the kitchen when the call came. I stood at the sink trying to figure out whose voice it was on the telephone. Her level of anxiety was so high, she hadn’t identified herself.
“Can they do that?” She asked. “Can they just say there is nothing they can do?”
Ah, my brain clicked. “Sheila? Is that you?” Sheila was someone I knew from the neighborhood, the kind of neighbor I’d stop and chat with about the weather or what she was planting in the garden, but not someone I really knew.
“Back up a little. Tell me what’s going on.”
The story spilled out without her pausing at all in the telling. Her 94-year-old mother had developed pneumonia, which led to respiratory failure. She’d been put on a ventilator because, as Sheila explained it, “They thought I should just give up on her. But I told them, ‘No.’ I wanted her to be given every chance possible.” As Sheila continued to tell me what had happened, I was able to fill in some blanks. Her elderly mother was too weak to survive without the ventilator. She’d been trached and PEGed, and moved out of the hospital to a long-term acute care (LTAC) facility several weeks earlier.
“Can you believe it? They practically kicked her out.” Once Sheila’s mom was settled at the LTAC, the doctor there told her that her mom’s AFib was causing problems and there was little they could do.
There was a long pause on the other end of the phone. Sheila was waiting for me to say something. She was waiting for me to help her.
“What else have they told you?” I asked.
I’m sure we have all had this experience: A nonclinical person tries to describe what has happened medically, and some of the information does not make sense. I listened to Sheila for a long time. She was focused on all of the small details, yet at the same time was missing the big picture. I wanted to listen closely enough so that I didn’t do the same thing. It would be easy to get stuck in the details of discussing her mom’s AFib, and what the doctors would or wouldn’t do. But there was a bigger picture. I had to listen closely to hear it. Sheila was very close to her mom, a widow, who moved in with her after Sheila went through a divorce.
“She is my whole life,” Sheila said. “I’m not going to give up. They can’t make me.”
When Sheila told the doctors she didn’t want her mom to be a DNR, I wondered if they knew the back story of an adult woman, divorced and with no children, who needed her mother to be okay, who needed for someone to fix her. Had anyone tried to put the situation into context?
Without context, the default is for someone like Sheila to fill in the gaps with her own rudimentary understanding of medicine. Our society has seen this same dynamic with the COVID pandemic — there is so much information out there that many take the information they do understand and combine it with what they hear or read and end up with the explanation they prefer. Sheila preferred the idea that something could be done, had to be done, to save her mother whose health was failing right before her eyes. Except, it seemed, Sheila’s eyes were closed to all of this.
“She was fine just a couple of months ago. They’re just giving up on her. They aren’t even trying to fix things.”
We live in a fix-it society. None of us wants to believe that there is nothing else that can be done in this circumstance. It was impossible to find out from Sheila how robust the medical information she had been given was. Had the doctors taken the time to explain everything? Had Sheila refused to take the information in, convinced that all the medical community wanted to do was deny her mother the care Sheila desperately wanted her to get? In a way, none of that mattered. Sheila’s perception of the situation was her reality. And each day she’d become more and more entrenched in the injustice of the impending loss of her mother.
Sheila had painted herself into a corner and there was no way out. I suspect a part of her understood that. But her logical brain wasn’t directing her behavior, her emotional brain was. The emotions of a daughter who loved her mother and who did not want to be left alone.
I had several more conversations with Sheila. One thing that was apparent was that she was determined to reject any realistic view of her mother’s situation.
She kept saying, “She was fine before she got this cold. People don’t die from colds.”
I wanted to help. I knew how to explain things, how to contextualize the situation. But Sheila was not interested in any of what I had to offer. She needed to hold on to her version of events. I was frustrated. On one hand, she had called me for help; on the other hand, she rejected anything I had to say. I felt sorry for her, but I felt worse for her mother being put through all of this at her age. Surely there was something I could say that would get Sheila to change her mind.
I listened to a podcast recently that mentioned the phenomenon of motivated reasoning. That is, we reach the conclusion that we want to believe regardless of the evidence. In this case, the conclusion Sheila wanted was for her mother to get better. I really wanted to help her but I wasn’t making any progress. Communication has 2 parts, but my conversation with Sheila about her mother and the medical situation was one sided. I asked for advice from another medical professional (maintaining HIPAA), a friend who is a doctor of psychology (PsyD). The answer was not what I wanted to hear. There was nothing I could do. Sheila actively blocked what I had to say.
Moral injury occurs when we are caught in this kind of situation. I saw the injustice to Sheila’s mom by her insistence at trying everything. I wanted to prevent what I knew would happen but was unable to. Sheila’s mom died a few weeks later. Her body was not able to recover and get stronger in spite of appropriate medical intervention.
I’m not sure when I will see Sheila again. When I do, I’m not sure what either of us will say to each other. I imagine that she feels I was unhelpful, that I was just another medical professional writing her dear mother off. I wish sometimes that communication was one way. That I could have told her what to do, and she would have agreed to it all. But it doesn’t always happen the way we’d like it to. And I have to remind myself that it wasn’t a failure on my part. It wasn’t really a failure at all. It was just a very sad reality that no one wanted to face, including me.