[cancer] Cognitive privilege

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 ]. 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 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.