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An author of no particular popularity

Jay Lake
Date: 2011-10-12 05:53
Subject: [cancer] Cognitive privilege
Security: Public
Tags:cancer, friends, health, healthcare, personal

[info]garyomaha asked me this question in email yesterday:

You’ve talked about how people without insurance are screwed by the system. Heck, even people *with* insurance are screwed by the system. But what about those people without the analytical thinking abilities that you clearly rank high in? If someone is not too good in thinking through things like this — scheduling days off, asking about the day after Thanksgiving, etc. — how can they possibly cope? Some may have a good support system (family, friends) who help. But ideally we’d all have our own patient advocate…and I’m guessing those aren’t all that common.

I’ve written before about class privilege and chemotherapy [ jlake.com | LiveJournal ]. [info]garyomaha‘s question raises a point that feels intuitively similar to me, though I can’t really find way to cast in a frame of privilege, per se. Unless there’s such a thing as cognitive privilege. (Handicapper General, anyone?)

In effect, when you enter the maze of serious healthcare problems, you also enter a maze of phenomenal complexity with respect to paperwork, decision making, processing of urgent and stressful information — a whole host of issues that are broached when one is least prepared to deal with them. In the case of TBI or other explicit forms of cognitive impairment, the problem is blatantly obvious, but it applies in truth to anyone who spends a lot of time heavily medicated or under the emotional, social and financial stresses of serious illness.

At a time when we’re least prepared to cope, we’re called upon to cope the most.

And what happens if we don’t cope? Payments can be missed, claims can be denied, needed treatments can be cut short or omitted. How do we think our way through these mazes?

The system really doesn’t recognize this problem. There are fixes of a sort in place here or there. Social workers, volunteer help at clinics, and so forth. But these are available on a patchwork basis, and even the best social worker or volunteer can’t come home with the patient, can’t sift through all their paper work, can’t help make their medical decisions.

A great deal of this demand comes from the arcane system of healthcare finance we have, which generates inches-thick stacks of paperwork. A great deal more comes from the tension between patient autonomy and patient capacity (or incapacity). In a sense, this is the most overwhelming trial of serious illness. Not only does the business life not go on hold for the patient, it gets more demanding.

How do we fix this? What do we do for people who can’t keep up with it? As the system stands today, mostly we just let them fall behind.

I wish I had an answer for [info]garyomaha, but I don’t. For my own part, I’m just damned lucky I’m smart and energetic and resourceful and blessed with a wide array of family and friends to step in and help.

Originally published at jlake.com. You can comment here or there.

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User: silvertwi
Date: 2011-10-12 13:38 (UTC)
Subject: (no subject)
I have a chronic condition that resulted in a 3-week flare-up of pain that just recently ended. It got harder and harder for me to deal with anything and everything, the longer it went on. And I don't even get billed for going to my uni's health center.

I also have a pretty good support system. I need to make an appt. with my class dean so that *she* can help me sort through things. It would have been nice if that had already been in place before this started because I needed someone else to advocate for me, badly. Still need, actually. It's really hard to contact 20 (or however many) different people for everything I need. I really, really hate emailing now.

Interesting question, and thanks for your thoughts on the subject!
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User: threeoutside
Date: 2011-10-12 15:13 (UTC)
Subject: (no subject)
Why, if you were a good person you wouldn't have these problems, don't you know that? If you aren't in the pink of health in this, the country with The Best Healthcare System in the World, then there is obviously some defect (or mortal sin) you're guilty of and you deserve what you get (or don't get.)

I felt this terribly when my husband was in the hospital. Right when we needed help and understanding and clarity the most, he was the sickest (non compos mentis, a lot of the time) and I was the most overburdened and stressed-out. The way it's set up now, our "health" system has nothing whatsoever to do with caring. (Except I have to salute BCBS because they were absolutely *terrific* for me. Not a single tear did I have to shed over BCBS. Not everyone has had that good luck with them, I hear. I cannot complain, though. Far from it. The medical "professionals"? That's a different story.)
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User: threeoutside
Date: 2011-10-12 15:14 (UTC)
Subject: (no subject)
Whoops - I put an end-quote bracket-slash sarcasm-bracket in there after the first paragraph, and it disappeared on publication. Duh me.
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silvertwi: Kurt oh dear
User: silvertwi
Date: 2011-10-13 03:35 (UTC)
Subject: (no subject)
Keyword:Kurt oh dear
I could still read the sarcasm in the general statement, if that's any consolation.
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User: e_bourne
Date: 2011-10-12 14:21 (UTC)
Subject: (no subject)
When Mark was in the hospital, it was clear that not only did he need a patient advocate, but there were times when I needed one too. I/We were deeply fortunate in having these things both in family members and in my work connections, and because we had a surgeon who (for whatever reason) fought like a lion for Mark.

I saw the system screw people over and over -- because it's big and lumbering and if there isn't someone there every second of every day keeping an eye on things and asking important questions, that's just what happens.

We have an awful medical system -- one of the worst. Anyone who thinks otherwise is deluding themself. We are ranked low on the international scale of health care systems because so many people are treated badly, so many people die, so many people can't cope and there is no mechanism to truly help them.

The terrible answer to your question is they can't cope. They fail, they become sicker, they become mired in bills and lose everything they've worked for, and bad things just pile up.
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User: shelly_rae
Date: 2011-10-12 19:59 (UTC)
Subject: (no subject)

I keep asking for help. My perfect credit score is now ruined because of medical bills. I don't understand any of it. Right now my living room is a pile of papers, boxes, crap as I try to figure out my taxes. I just cannot do it and cannot explain why I can't do it. I don't understand my medical situation, or my insurance, or any of that. But I can carry on a conversation about Chaucer or Shakespeare or think thoughts about friends.

On the surface it all looks ok. But thats the problem with hidden illness. My scars on my face show a little, the ones inside my head, my tumor? Not so much.

Advocate? Wear?

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User: kimberlywade
Date: 2011-10-12 15:33 (UTC)
Subject: (no subject)
This is such a hot button issue for me. I'm healthy and i have private insurance. My family physician of fifteen years employs a team of people to handle his billing. They work with about eight different insurers. When i try to find out in advance what is covered, all they can tell me is that they won't know until after they file the forms. I call my insurer (Anthem) to ask what is covered and they basically tell me the same thing, they can't say for sure until they get the form from my doctor's office, so this idea that you can shop around for health care is ridiculous!

I've talked to my doctor about this and he would love to see the move to single payer because it would be so much simpler and in the long run save him money. When an insurance company doesn't pay, then he has to figure out how to get that money from the patients, patients who thought they were covered and probably don't have the resources to pay for the treatment they've already received.

Oh, it's just maddening! Government bureaucracy is not the only bureaucracy!

Sorry for the ramble, i have trouble containing myself when speaking on this issue.
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User: mmegaera
Date: 2011-10-13 02:26 (UTC)
Subject: (no subject)
I've been running up against this one lately, too. I have catastrophic-only coverage, because as a self-employed person it's what I can afford (afford's not the right term here, but you know what I mean). Therefore I have to know what a test is going to cost before I have it performed, so that I can figure out how to pay for it first.

But my HMO makes this as difficult as possible, so I'm stuck in a position where my doctor keeps bugging (to the point where it feels like harassment) me because I haven't had the (routine, not acutely necessary) tests run and I keep telling her I'll be glad to as soon as I know how much they're going to cost me...
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User: kimberlywade
Date: 2011-10-13 02:42 (UTC)
Subject: (no subject)
Yes. Sigh. It sounds all too familiar.

I have a five thousand dollar deductible, but that's different from my "out of pocket" which somehow adds up to around $15000. My agent has tried to explain to me how this works since the policy does such a poor job of it. I still don't understand--and i'm not dumb! I feel like they do their best to make me feel that way so i'll just give up and take whatever they decide to give me.
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Gary Emenitove
User: garyomaha
Date: 2011-10-13 11:46 (UTC)
Subject: (no subject)
Yes! I've asked about deductible vs. out-of-pocket/copay and I can never get a clear answer. Very frustrating.
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User: kimberlywade
Date: 2011-10-13 15:43 (UTC)
Subject: (no subject)
On the one hand, i'm glad that i'm not alone, but on the other it feels a bit like we're on the same sinking ship. I have some hope things will change for the better when the new law goes into effect in 2014, but with the insurance companies still firmly in control, i'm not so sure.
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Kari Sperring
User: la_marquise_de_
Date: 2011-10-12 17:13 (UTC)
Subject: (no subject)
One of the things I feel not guilty precisely, but maybe uncertain or complicit about is that I did not sue my last academic employer. I had a good case. I had union backing. And I was crazy (I have the medical reports to prove it): I could not think straight enough to do it, I couldn't muster the coping even to begin to think about doing it. If I had sued, it's possible others in that place would not have experienced the things that subsequently happened to them. But I could not face it: it was too frightening. Perhaps if the union had been more pro-active, or I'd had a stronger sense of self or more confidence.... It's hugely difficult in these sorts of circumstances. What's needed is good, unbiased advocates and support workers.
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User: tillyjane
Date: 2011-10-12 23:45 (UTC)
Subject: advocacy
I attended a dear old friend through her final two years of life...my experience was that in the hospital she got pretty good care and I could depend on the staff to know and follow orders and to listen to her and keep me informed. Because of difficulty hearing and seeing, and some tendency to mumble, people tended to assume she was unable to speak for herself or understand...so would talk to me instead. I had to keep redirecting.

But in rehab hospital and long term care facility they didn't listen to her at all. It took daily visits, it took staying right on top of current orders and calling staff back when they strayed. It took being very assertive and insisting on attending all staffings. Daily, persistent, exhausting.

She had both medicare and a private policy, and there were no particular problems with paperwork. But when there was argument over whether or not further rehab could be covered under medicare rules there was little recourse and less help finding it. We had to search out the appeal process and set it in motion ourselves.

This is all so very wrong and unreasonable...Those least able to advocate for themselves are at the most disadvantage.


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User: fledgist
Date: 2011-10-13 17:55 (UTC)
Subject: Re: advocacy
This is very true. When I was in hospital last year, I very nearly got taken for someone else's surgery. Had my wife not been present and intervened, who knows what would have happened. I am an educated person with decent insurance. I was also somewhat out of it (being in recovery at the time).

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