Today I had a 3p meeting at Cedars-Sinai with three doctors to discuss Gene’s significant mental and functional decline. Their assessment was sobering. They were concerned that he had lost so much of his former ability that he seemed to retain only a small fraction of what he could once do. They also felt that substantial improvement was unlikely.

We discussed his prognosis and what his future care might look like. The doctors raised the possibility that continuing treatment could prolong his suffering, and that allowing him to pass peacefully might ultimately be more compassionate.

Those are incredibly difficult things to hear when you love someone and are still hoping they can recover. We also discussed future care and the need to begin getting his affairs in order.

One issue I particularly wanted the doctors to understand was Gene’s hearing.

He had significant hearing loss even before entering the hospital, and his ability to hear ordinary conversation now appears profoundly impaired. When I type questions into my iPhone and show them to him, he can sometimes read and answer them. Yet when people speak to him, he may appear unable to understand or follow instructions.

I explained that his difficulty responding verbally might not always mean that he cannot comprehend what is being asked of him. He may simply be unable to hear the question properly.

This was important because the doctors had not fully appreciated how much his hearing impairment might be affecting their assessment of his mental state. Raising it opened up a more productive conversation about what might be contributing to his difficulties and what else we could investigate.

We discussed several next steps. These included arranging an ear, nose, and throat specialist to evaluate his hearing, continuing to reduce his Seroquel gradually to see whether his alertness improves, and assessing his responsiveness and his ability to tolerate restraints.

I also requested CT scans and an MRI to investigate whether he might have experienced strokes.

The plan was to meet again on October 21 and review how things were progressing.

I left that conference with very serious concerns about Gene’s condition and a great deal to process. I understood that the doctors were worried and that they did not expect a substantial recovery. At the same time, I was not ready to dismiss the possibility that some of what we were seeing might be influenced by factors that had not yet been adequately addressed, particularly his hearing loss and the effects of medication.

I wanted those possibilities examined before drawing conclusions about what Gene could or could not understand or what his future might hold.

There were no easy answers that day. The immediate task was to keep looking carefully at his condition, understand what might be contributing to his decline, and prepare for the next conversation with his medical team.

Thank you for taking the time to read this. 

Alexa