It’s almost been long enough that I can talk about my husband’s death. He died as a result of the most extraordinary extrapyramidal syndrome that I’ve ever seen. I haven’t practiced general medicine for over 30 years, but as soon as I walked into his hospital room I knew what he had. The neurologist who saw him an hour before had missed it. It was a Saturday, and I couldn’t reach the neurologist or his attending.
I spent the weekend trying to get him the right medication at a hospital where I didn’t have privileges, and in which he’d ironically once been head of the Ob/Gyn department. The bottom line was that his team missed his diagnosis and then didn’t listen to me. Several months later I felt I was ready to meet with hospital administration – with the modest goal of ensuring that family members can reach an attending doctor over a weekend – and then COVID-19 shut down all outside visitors. I never had that conversation. I have heard similar stories from my patients whose hospital care (before and after COVID-19) is not what anyone expects in the first world.
In a chance conversation, Vickie Stern told me about her work on the Patient Family Advisory Council (PFAC) at Johns Hopkins. It seems to me that creating PFACs may be the way forward to correct systemic problems in the delivery of patient care. I am still contemplating what I need to do to ensure that no patient or family member has to go through what I went through, and I wonder if this is a way to approach it?
Here’s a link to Vickie’s article from Today’s Wound Clinic.