Since my dad died, I get this question a lot – how are you doing? And some days, I answer with an “ehh” sound; some days I reply “doing OK”; but some days that question is met with a grimace and I can’t ever answer at all.
That horrible, crushing feeling of grief – the kind that won’t let you catch your breath and tears constantly on the verge of spilling over – mostly that has subsided. But in its place is this splinter of ice deeply embedded in my heart. If I move just right, I can just feel the coldness sitting there. But when I move too quickly or a song comes on the radio, or I see someone walking down the street that reminds me of my dad, or even if a snarky comment rises to my lips that I know my dad would have found hilarious… then that splinter twists, unfreezes, and a river of heat floods my body until the only escape for all that water is through my eyes. And after 2, 5, 15 minutes when I’m all cried out, that splinter has found a way to refreeze, reloaded for the next time.
I think of that saying “time heals all wounds” and I look at the scar on my leg, reminding myself that the raw and oozing wound I had from the excision managed to heal over the past three and a half years into a faint scar that only is noticeable when the light catches it just right (or when I walk or work out and it gets purplish). It’s been less than two months since my dad passed and I remember how terrible my leg looked at the two month mark. But I worry that this wound, the massive hole created when my dad passed, won’t be healed quite the same way…
My mom has moved into the anger stage. She has had to deal with a lot of real consequences of my dad being gone. I try to be as supportive as I can, even though I’ve not hit that stage of grief yet. Well, maybe I am but it’s just not directed towards my dad but his doctors instead. I’ve been pouring through his medical records to write a timeline for my mom (part of the ombudsman process). And in those records, I see complacency. I see medical anomalies that don’t look right and then I get angry that these doctors all pigheadedly refuse to look a little further into what was going on with my dad. It’s like they all made up their minds, “oh he’s obese” (even though in the last 6 months, he had lost so much weight that he didn’t actually meet the obesity definition), or “he’s got a history of heart trouble” (even though the cardiologist in the hospital said his heart was doing fine and based on all of the test results I’ve seen, he was right). He was obviously way sicker than any of them thought because nearly every single doctor that came into contact with him in his last month expressed shock and surprise when they found out he had died. And I’m like, you are the medical professionals who should have known this was coming. You should have looked at those labs and said, what the hell is going on with this man… I’m not a freaking doctor and I could tell those labs didn’t line up with someone with a long-term chronic thing but a person with something acute happening and was rapidly declining as a result.
We didn’t order an autopsy for my dad. When he died, it was such a sudden turn of events, neither my mom nor I were thinking along those lines. But looking at the records, pouring over the lab results, and reading the doctor’s comments – I wish we had asked for one. It wouldn’t have brought him back and it wouldn’t have changed the outcome but at least there would be closure on knowing why this happened so damn fast.
I guess the real lesson in this for me right now is the reminder that doctors are fallible. They make mistakes, they have prejudices, they commit to a conclusion long before all of the facts are in. They are as guilty of confirmation bias as anyone else. I guess I am in the anger stage because I’m angry all right. I’m angry I didn’t more forcefully tell my parents to let me advocate on their behalf. They come from an era when you never questioned the doctors because those men in the white coats were demigods. And we know they’re not.
In March of this year, independent healthcare research organization ECRI Institute published its 2018 patient safety report. Ahead of the opioid crisis, diagnostic errors ranks as the number one concern. Approximately 18 million diagnostic errors occur every year! “Diagnostic errors are not only common, but they can have serious consequences,” says Gail M. Horvath, MSN, RN, CNOR, CRCST, patient safety analyst, ECRI Institute. “A lot of hospital deaths that were attributed to the normal course of disease may have been the result of diagnostic error.” The research on this topic shows an average error rate between 10-15% and some studies suggest that rate may be much higher in specializations. According to ECRI Institute, 48% of skin-related diagnoses made by non-dermatologists are incorrect.
So if you think something doesn’t look right, doesn’t feel right and your doctor says there’s nothing wrong but deep in your bones you know otherwise – get a second opinion at least. Advocate for yourself and remember that at least 1 out of 10 times, your doctor is wrong. Don’t let something go because someone in a white coat hurried through their exam and told you there was nothing to worry about. Don’t make your family get angry on your behalf when their anger can’t help resolve anything…