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It is not unusual for a patient and family to disagree on treatment. The difference this time was the force of Millie’s insistence. The hospital was still on COVID lockdown from visitors so FaceTime was her only way to see her husband. Certainly this was a factor because even with a good connection, it was impossible for her to see how ashen he’d become, how he used accessory muscles to get enough air to speak, harder still when she filled in that gap by talking. Yet we saw how he fought for each breath. Our job was to help her see and to help her hear what he wanted.
There are, of course, 2 parts of good communication: talking and listening. The communication challenge with Millie was that she was not listening to us or to Dan. It seemed obvious on one hand that since Dan was clear in what he wanted that Millie would hear and accept his wishes. But after reviewing his clinical status, reminding her of his wishes, we kept coming back to the same place: She wanted him to keep trying. She wanted more time. It was easy to roll our eyes and say, “She just doesn’t get it.” But it was not our job to convince her, rather it was for us to understand her. Her apparent denial was driven by her impending loss. She could not back up fast enough.
Most of us have encountered a family member like Millie. In truth, they can be difficult to work with. Yet the pushback is good for us. It’s a reminder that families facing a loss often come to irrational conclusions. I read recently about complexity bias, which is that it is easier to accept a complex false truth than it is to accept a simple truth. We trust the complex. For Millie, her complex false truth was that if Dan went on the vent he would get stronger, he would get off the vent, recover from his pneumonia, get strong enough to go home, and start more chemo and that the chemo would give him more time, in fact it would give him a significant amount of time.
The simple truth was what Dan clearly understood; he was dying. If Dan had had more time, we might have helped her see his truth. Instead, via FaceTime, she watched as he took his last breath. He died near the beginning of the pandemic when family members were forbidden to come into the hospital. Maybe if she could have seen him in person she might have understood. And if she didn’t, we could have been there with her to provide actual physical support.
Sometimes the most challenging communication situations are out of our control. This was one of them.
