I am a shitty healthcare consumer

BE AFRAID! BE VERY AFRAID!
BE AFRAID! BE VERY AFRAID!

Thinking about finding new doctors — a PCP and a neuropsychologist — I am dreading one thing in particular:

The expectation that I’ll be a “good consumer of healthcare services”.

Augh! Nothing sends me over the edge like that “consumer” label, when it comes to healthcare — especially brain injury recovery. It makes me NUTS.

Here’s why:

The label “client” boils us down to a set of behaviors or “consumer choices”, rather than living, breathing, vulnerable human beings in need of assistance in both subtle and obvious ways.

The label “provider” makes the doctor/neuropsych seem like an impersonal automaton who’s just going through the motions of providing a thing — like a vending machine delivering the bag of chips from the cubby you chose, or a fast food employee asking if you want fries with your order.

The client/provider terminology reduces the whole relationship to a series of transactions, which is really what they are in insurance company terms. And that sucks all the life and humanity out of it. Instead of being living, breathing people who show up in need of assistance, we’re male/female objects of study who are assigned whatever coded solution the provider deems necessary.

Calling us “clients” also completely misses the fundamental hallmark(s) of brain injury in a number of ways. As a reader commented on a recent post, we don’t have the choice about whether or not we need treatment. It’s not like you wake up one day and realize your shoe has a hole in the bottom, so you go out to your favorite store and pick up a new pair… or you think a certain outfit makes you look fat, so drive to the mall to find more flattering clothes.

With a brain injury, you may not even realize that you suddenly have needs — or if you do realize that, you may not understand what it all means — or you may not have the capacity to reach out and find help — or you may not have the means to get the help you find.

Using the client paradigm for brain injury survivors is wrong — and stupid — in so many ways. It’s also cruel and perpetuates suffering in countless ways that directly violate the Hippocratic Oath that every doctor must swear to. They actually promise “I will utterly reject harm and mischief” — but the client concept just perpetuates harm and mischief without end. Okay, so mental healthcare people, including neuropsychologists, don’t have to swear to the oath, but even so — wouldn’t it make sense to at least have an interest in rejecting harm and mischief?

From the comment:

I can still hear the founder of the National Head Injury Foundation (NHIF) (whose daughter has a brain injury) when a group of advocates with brain injuries were discussing how demeaning and offensive the word “client” was at NHIF annual meeting in 1988. She was defending her position by giving us examples of her being a client of hair dresser and her insurance agent. She said she had the ability to go to another hair dresser or insurance agent if she didn’t like how she was being treated. “I’m a client of theirs, but I have the power because I can go to someone else with my business”.

Hahahahahahaha… Sigh.

“Client choice” implies the capacity to A) identify what you need, B) see that you are/are not getting your needs met, C) go somewhere else.

A) You have a brain injury (hello!) – how the hell are you supposed to be able to identify what you need? You are often blind to your own deficits AND you can come up with all sorts of imagined deficits which aren’t actually there.

B) Your brain injury can prevent you from determining whether or not your needs are being met, because of damage to assessment and decision-making functions in the brain. Even the most poorly educated brain injury professional would know that. It comes with the territory. If you can’t determine what your needs really are, how in heaven’s name are you supposed to tell if those needs are being met. As an aside, I was convinced for years that my neuropsych, while helpful in many ways, wasn’t really helping me with my main problems. But guess what? They were. I just didn’t realize it for, oh, about five years. That’s way longer than most people have access to, or continue with, brain injury rehab.

C) Thanks to the Swissy-cheesy medical system, with is chock full of hacks, under-educated docs, aggressive/defensive insurance companies, and hurdles that are well nigh impossible for completely functional people to navigate, the chances of us being able to shop around for better help are slim to none. In rural areas (as in, most of the USA), you take your life in your hands, when you choose a doctor. Even in urban areas, it’s hit and miss. I’m going through this right now, with replacing my two docs — I feel like I really got lucky finding the two I’m losing. How am I supposed to repeat that luck? I have maybe two good thinking/functioning hours a day, thanks to fatigue and overwhelm, and no offices are open at the time when I’m at my best. The rest of the day, when I’m working and living my life, my bandwidth is severely limited (though I do a great impression of a functional average person). I simply don’t have the leisure of scouting around and going through an extensive screening process. And even if I did, I have no confidence that I’d be able to find reliable help in a timely manner — or that I’d even choose well.

Even after 10 years of recovery and being more functional that I’ve ever been, I feel like I’m basically screwed. After all this time, and with all my new tools, I still have no faith in 1) myself and my abilities to successfully navigate a complex and hostile system, or 2) the medical establishment which protects sub-par doctors under a veil of professional courtesy and allows terrible (and dangerous) doctors to “practice” medicine on patients who basically amount to science experiments.

I am the epitome of a terrible healthcare consumer. I’m an awful client. I question doctors’ authority. I challenge their ignorance. I bring pen and paper with me to write things down, and I type up my issues to give to them, when I arrive. I research my own conditions, I get to know my own “ecosystem”. I don’t sit back and let the doctors do all the driving. And I’m non-compliant, because some of the things they tell me are lazy… or uninformed… or overtly hostile… or deny my right to personal autonomy.

I don’t believe in roles-based medicine. I don’t believe in much roles-based anything. People who have to fall back on some template of behavior are instantly suspect to me, and people who spout jargon without even thinking about what it means, are on my shitlist. If you have to have your behavior defined by someone else, I’m not interested in working with you, because you are dangerous.

Of course, I will if I have to. I may have no choice, because contrary to the idea of us being “clients”, the selection of decent doctors who have a clue about my condition is sparse, scant, and the majority of them are booked up. Or they don’t take my insurance. I’ve had to make do with shitty doctors for years, and the prospect of having to go back to that again, doesn’t brighten my day. It’s almost like the whole system is designed to fail us.

Seriously, it’s like the insurance companies and the medical establishment want us all to just die off — after they’ve collected our premiums, of course. It’s much cheaper for us to die. And a lot less trouble for them.

Treating brain injury survivors as clients or consumers of a medical product system is a great way to ensure that the people who wish us ill, actually get their wish. It’s also is a very stupid way to look at things, and no right-minded individual who actually understands — or genuinely cares about — the impact of brain injury on person’s ability to assess, evaluate, and choose, is going to adopt or repeat that nonsense.

The problem is, it keeps happening.

Oh, screw it. I’m going for a long walk in the woods.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

6 thoughts on “I am a shitty healthcare consumer”

  1. Just wondering if your current doctors are providing you with the names of those who they recommend. If they are good doctors, they don’t want to see their patients flail or suffer in the transition. Who do they use currently for backup when they are unavailable, such as when they are on vacation or at a conference? Also, what ancillary services have you been referred to? Maybe they have an opinion about a physician or neuropsychologist that they like and trust.

    Liked by 1 person

  2. Being an active patient is not the same thing as being a shitty client. It’s simply what you have to do. The reality is that there are several hours worth of reading every doctor could do every night to keep up on new information in their field. It’s worse for PCPs who are expected to keep up with a broader range of topics than are specialists. Beyond that, docs are accustomed to seeing certain diagnoses. When they see something out of the norm, they are likely to misdiagnose it as something to which they are accustomed. Therefore, you have to be your own advocate.

    Liked by 1 person

  3. My husband keeps up with his medical reading and sacrifices popular books and literature (and even reading on our daughter’s injury and treatment resources). He’s a good doctor, I think, based on what I see him dealing with ;and I used to work in a MICU, SICU, CCU, and step-down unit). I know his hands are often tied by insurance issues, and our family makes sacrifices of having him spend our time with him as a family so he can be there for his patients. So I always wish for others to have the same level of good care he provides, though I know there are doctors out there that do not give to the extent he does. (With regards to the reading he misses out on personally, I highlight the key items and talk about it with him so he stays in the loop; and I recommend one book a year as a must read). I do agree that the patient or caregivers need to be their own advocate for a tbi–it is how we received much of our care, though we did have a good speech pathologist and occupational therapist that pointed us in the right direction when the services weren’t covered by our insurance.

    Liked by 1 person

  4. That is really great to hear. I am sure that makes a huge difference in people’s lives. My spouse’s doctor keeps up on reading by spending every spare moment in the library. It’s not easy, but it can be done,

    Like

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