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I learned about patient advocacy the hard way

By April 16, 2012January 1st, 2025No Comments

Well, maybe it wasn’t the hard way for *me*, but it was a hard lesson nonetheless.

When I was in my early 20s, my maternal grandmother (the Admiral’s wife) had a serious health event that involved hospitalization, and fear that she was at death’s door. The cause turned out to be not heart failure, not a stroke, not peripheral artery disease, not “old age”, but … pharmaceutical assault.

This assault was perpetrated by her trusted family doctor, one she’d been seeing for over a decade. When we pulled open the drawer where she kept her medications and found more than 40 bottles of pills – all current scripts – we figured out pretty quickly what the disease was that we were dealing with. Stupidity.

She recovered, and lived another nine years – until the last minute, she was entertaining, cooking, enjoying life, and taking only a few meds.

Lesson learned: drugs interact with each other, and in an even more scary way than the recreational drugs I was familiar with had interacted on many of my friends …

Fast forward 25 years, and my parents – the Admiral’s daughter and the dashing fighter jock – were battling a couple of health issues. Daddy had Parkinson’s disease, Mom had had a pituitary tumor that had been removed, but that missing pituitary gland had put her on a cocktail of endocrine management meds that had to be delicately balanced to ensure that she didn’t wind up in a permanent sinking spell.

I found myself advocating for both of them at various times for equally various reasons, but my hard lesson there was this: unless someone is advocating for you, you could easily wind up dead, or crippled.

I discovered that all the years I’d been researching news topics were right handy when it came to knowing how to find out – fast – what a diagnosis or prognosis meant, and to be able to pick up terminology and jargon after hearing it only once.

All nurses thought I was  a doctor. Most doctors thought I was a doctor. I started getting much more information once that was in play.

And that’s a really crummy lesson – unless healthcare thinks you’re an insider, you’re treated like a meat puppet.

That attitude is starting to shift, but the pace of that shift still feels pretty glacial. Until all doctors treat all patients in a way that recognizes their humanity, and their right to know what’s happening to their bodies during all treatment option