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Medical defense

My mom, 90-something years old and always invincible, always in perfect health, fell at her home over the weekend. Send no cards — she’s alive and reasonably well.

She made two trips to the emergency room, and she’s no longer invincible. She’s using a walker, and a seat-riser for the toilet at home. She's still mentally sharp, though, and still my mom — when I called, even before she told me about her trips to the ER, she inquired after my immortal soul.

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Stephanie, my wife, had health issues for many years before her death. She saw a lot of doctors, went to many clinics and emergency rooms, and was hospitalized about 15 times (rough estimate). Some of the medical care she received was excellent. Most was competent. Some wasn't.

After several experiences with simply shitty doctors, uncaring care, and stupid medical rules, Steph & I learned to play medical defense, which means, always be smart but skeptical, ask "why," and always push for what you need. Push hard, if necessary.

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When my sister, Katrina, took Mom to the emergency room, they arrived like most people do, worried and hurried and hoping for help. They didn't know that they had to play medical defense, so here's what happened:

Because of the recent upsurge in COVID cases, visitors aren't allowed in the room, with hospital or ER patients. So my sister had to wait in the lobby, while my mother was set up in an ER cubicle, and answered the ordinary questionnaire. When Mom finally saw a doctor, it was just her and the doctor in the room.

Mom told the doctor that she’d been feeling weak for a few days, and the doctor decided that's not unusual for a woman of her age. He told her to get some rest, and sent her home. Since my sister was in the lobby, not in the room, she couldn’t say, “Well, actually, Mom hasn’t eaten anything for five days” — which is, you know, pertinent to the weakness and the falling. 

Extended lack of appetite isn't necessarily a sign of serious issues, but it certainly can be. It's something the doctor needed to know, but Mom forgot to mention it, so her first visit to the ER was a wasted trip, with no worthwhile medical advice or treatment.

When I spoke with my sister on the phone, while Mom still wasn't doing well, I made a tiny suggestion: If they needed to return to the ER, Mom and Katrina should write everything that seems pertinent on a sheet of paper, and make sure the paper gets into the doctor’s hands.

That's not brilliant or anything. It's fairly obvious when you think about it, but in the ER, when your head's full of worries and a hundred machines are beeping and you're three clicks from a panic, you might not think of it. 

Why didn't the ER staff suggest it? Good question.

When Mom fell a second time a few hours later, they returned to the emergency room, and Mom was armed with that piece of paper. She handed it to the doctor, the doctor read it, and my mom got better medical help.

They also pushed back, gently, when the ER tried to schedule a follow-up appointment for my Mom in October. Only because my sis insisted, Mom will be seeing a doctor on Tuesday — tomorrow — instead of a month from now.

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That's my mom's story so far, but I want to say more about medical defense, in case anyone reading this is seeing a doctor for something serious, or knows someone who is.

At every doctor's office, lab test, hospitalization, even at a vaccination, assume they're short-staffed, underfunded, and in a hurry. It's not that they don't care, but there simply isn't time for them to care.

The first time Stephanie & I knew we'd been rushed, and strongly suspected the advice we'd been given was simply wrong (it was), we talked about it with a wonderful nurse at 3AM, at Steph's bedside in the hospital. The nurse explained to us, "You need to be your own advocate, and fight for yourself."

Over a dozen years of battles, sometimes wars, with medical providers, Steph & I learned to fight for ourselves. She died, yeah, so we lost the fight, but if we hadn't been playing medical defense all along the way, she would've been dead years earlier — not long after our conversation with that nurse.

Our #1 rule was: We're seeing the doctor together. That was Stephanie's idea. Medical stuff is complicated, and she thought it was smarter to have two brains listening, two people asking questions, both of us offering information the other might have forgotten to mention. The doctors didn't object. If any doctor does object, get a different doctor.

Some of our other rules, learned from experience, and offered in no particular order: 

The doctor might not ask all the right questions. It's a good idea to help, by having the facts, the background info, and your own questions and concerns written down in advance. Read from your list during the appointment, to make sure you don't forget anything.

Take notes during the doctor's visit. If the doc uses big words, ask for definitions. Google it later.

The doctor is not your enemy, but he/she is not necessarily on your side. You might be the 28th patient the doctor sees that day. He may be distracted, because he had an argument with his wife that morning, or he's having an affair with the X-ray technician.

If you have a serious medical issue, you'll be thinking about it frequently, even after the appointment — but your doctor won't. Marcus Welby and Gregory House are fictional characters.

• Do not politely agree to an appointment in six weeks, if you don't think it's safe to wait that long. Remain calm and cordial, but firmly insist on seeing a doctor more quickly, if that's warranted. A couple of times, we called a clinic every two hours, until "something opened up" and an appointment was available after all.

Some doctors think they're dispensing wisdom from on high, but that's wrong. You and your doctor are having a conversation, that's all. No MD is your boss, your priest, or your superior in any way, beyond having medical training. "Doctor's orders" are given to staff, not to you.

If you think your doctor is wrong, it's OK to say NO, to anything he/she suggests, recommends, or prescribes.

If you think your doctor is often wrong, or doesn't give a damn, trust your gut and fire that doctor. There are other doctors, and better doctors.

• Every time it seems pertinent, remind them of your allergies, especially any bad reactions you've had to any medication in the past. Sure, your allergies are already in your chart and in MyChart™, and yet, things can be forgotten. My wife had a severe allergic reaction to a common medicine for one of her chronic conditions, and doctors tried to re-prescribe that medicine for her, twice.

In hospital, doublecheck the medications. You're not allowed to bring your prescriptions from home; all your ordinary meds are instead provided by the hospital pharmacy (at inflated prices). In my wife's many hospitalizations, she was given the wrong prescriptions three times — drugs that had nothing to do with her conditions, instead of the meds she needed.

In hospital, doublecheck the meals. My wife wasn't quite 'allergic' to apple juice, but it always gave her runny-poops, yet no matter how often we told that fact to doctors, nurses, and dietary staff, apple juice was on her meal tray about 10% of the time. Also, she was diabetic, but the hospital kitchen sometimes brought Boston Cream Pie for dessert. 

There's no such thing as "too many questions" or "a stupid question" to ask your doctor.

• When you're talking to the doctor, if he/she seems to have undervalued a fact you feel is important, or hasn't answered your question, repeat it.

• If whatever you're told doesn't make sense, ask them to explain it again. If it still doesn't make sense, ask again, or ask for a different doctor. 

In short, you have to be on your side, because they're not. You must advocate for yourself, in medical situations, and again I'll say, if at all possible you should have a co-advocate beside you — spouse, lover, parent, child, or friend.

And always, you must play defense.

 9/6/2021

 itsdougholland.com 

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2 comments:

  1. They got your wife's prescriptioins wrong three times?! This is scary Doug but good to know though. I am bookmarking the page, to show it to the wife of a freind who has cancer.

    ReplyDelete
    Replies
    1. Yes, three times. Believe me, I've very much abbreviated the details of Steph's medical battles.

      Delete

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