[cancer] Cognitive privilege

[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.

6 thoughts on “[cancer] Cognitive privilege

  1. M.K. Hobson says:

    FWIW, sometimes insurance companies or employers provide case management services or health advocates. It’s the case manager/health advocate’s job to help the member/employee (and their family, if applicable) navigate the complicated landscape you describe– deal with multiple doctors, provide advice ob coordinating care, interface with the insurance billing department, etc.
    It doesn’t sound like you have such an individual at your disposal, alas. And I don’t know anyone personally who has workeda with one … but I do know they exist.

    1. Jay says:

      Actually, I have had a case manager in the past. But they can’t come over to my house and open the envelope I forgot I received from the clinic, for example, nor can they actually fill out the forms from over the phone out of state. It’s helpful, but case management still relies on a lot of situational awareness and regular followup from the person in the worst possible position to manifest those habits.

  2. pelican says:

    And, “case managers” from insurance companies have a clear conflict of interest … some are good, but some see their job as acting as the kind face of the insurer who eventually says “you’re denied.”

    Jay, I think this is a clear example of class privilege … who but the upper middle class, well-educated, white collar individual would believe that repeatedly filling out reams of paperwork would eventually lead to something good?

    1. Jay says:

      Heh. I’m not even sure I believe it will lead to something good, but I know perfectly well that *not* keeping up with the paperwork definitely leads to bad things.

  3. Jaws says:

    Actually, this is just class privilege once removed. Scheduling the principal’s time used to be the job of the major domo, or personal assistant, or whatever job title there was. Too many corporate executives, etc. still have that attitude; while I was on active duty, it was easy to tell which flag officers were from upper-class and/or military-family backgrounds — they treated their aides like this for all aspects of their lives, not just the military ones.

    In H’wood, they’re called “managers” and “personal assistants” (like you see in the credits at the end of a film or the fine print on a CD). And the same for the recorded-music industry.

    If that isn’t a class basis, I don’t know what is.

  4. Janet says:

    It’s not just a monetary privilege issue. I speak from years of experience handling medical bills for a retired husband, a disabled son, and elderly parents, as well as my own cancer.

    When a person must go on Medicare due to age or disability (and some employers don’t give them a choice), the amount of medical-related paperwork seems to quadruple. No matter what your financial resources, those who are victims of disability and the conditions that plague the elderly (can you say Alzheimer’s?) are faced with exponentially increasing paperwork and coordination of benefits when their mental/physical/emotional resources are often reduced.

    Those who think the Medicare system works well and covers all health expenses are sadly mistaken. If you can’t afford or qualify for a private Medicare supplement (and they aren’t cheap), you get hit with sizeable expenses for just an annual checkup. If your resources are below $2000, you might qualify for Medicaid, but many doctors won’t accept your insurance and program benefits are being severly curtailed by states in budget crises.

    Being old or disabled doesn’t pay well.

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