Medical "Systems" Were Not Designed for the Benefit of Patients

Last Thursday I was running low on one of my insulins so I went to the pharmacy to get a refill. There I was told that there were no more refills on the prescription, but the pharmacy would contact my doctor to get it refilled. So of course on Friday I got a voice mail from the UW Diabetes Care Center (DCC), where I was forced to go for my diabetes care, letting me know that a) I needed to come in for an appointment, but b) they would refill my prescription so I’d have the insulin I needed in the meantime. 

I tried calling back to schedule the appointment, but stupidly called during the lunch hour and so couldn’t reach anyone. Then I got busy at work and forgot about it.

Recalling the assurance that the prescription had been renewed, on Sunday I went in to the pharmacy to pick up my presumably refilled prescription.

Yeah, no. The pharmacist there told me that, actually, the DCC had refused the prescription. Joy.

So on Monday I called the appointment line for the DCC and, naturally, got voice mail. I left my number so they could call me back, and about twenty minutes later they did. Here’s roughly how the conversation went:

Scheduler: Hi, I’m returning your call. How can I help?
Me: I've run out of insulin, and my prescription has run out. I got a voice message that I needed to schedule an appointment before I could get a renewal, so I'm calling to make that happen.
Scheduler: Yes. That’s how it works. You have to be under the care of a doctor to get any prescriptions. Who’s your doctor?
Me: I have no idea.
Scheduler: I don't understand. What do you mean you have no idea?
Me: Let my explain. I’ve had Type 1 diabetes for thirty years. I also have stage IV colon cancer that’s killing me. Thus, I don’t really care about my diabetes anymore. I changed my insurance two years so I could be seen at the SCCA for my cancer. As a result of that change, all my other doctors changed as well. I don’t know who they are.
Scheduler: So you’re seen at the SCCA?
Me: Yes.
Scheduler: Oh, then you’ve called the wrong place. You need to talk to the SCCA. Let me transfer you.
Me: Wait! The SCCA does not care about my diabetes. They only care about my cancer. They referred me to a primary care physician at UW Medicine to get me diabetes care and insulin prescriptions. I saw that person once, and that person decided they didn’t have enough expertise in diabetes, so they told me I had to go to the Diabetes Care Center. I’ve been there once. This is why I’m calling you. I need to see a doctor at the DCC who can give me a prescription for insulin.
Scheduler: So who did you see?
Me: I have no idea. It was some med student or fellow or something. I saw them exactly once. I have no idea who it was.
Scheduler: Well, I’m not sure how you can expect me to help you if you don’t know who you need to see.
Me: A doctor at the Diabetes Care Center. Pick one. I don’t care. I don’t care about my diabetes. I’m dying of cancer. I just need my insulin so I can stay out of a diabetic coma while my cancer does its thing.
Scheduler: Let me put you on hold.
Me: Sure.
[musak, musak, musak]
Scheduler: Ok, you saw Dr. Somebody.
Me: Ok.
Scheduler: I can get you scheduled to see them again, but the clinic will need to renew your prescription since you’ll have to wait a bit for the appointment.
Me: Ok.
Scheduler: The next available time I’ve got is 8:45 on September 13. After that, the next available is November.
Me, internal dialogue with myself: Tell her you'll be dead by November. Tell her you'll be dead by November.

Me: September 13 is fine.

So now that I’ve had time to reflect, I’ve got a few questions:

1. What’s the point of a “medical system” if the people in the system can’t actually see what’s going on? Shouldn’t the scheduler be able to look in their little computer screen and see all my myriad doctors and pick the one that seems most relevant? Why was she so adamant that I provide the name (which she eventually located on her own)?

2. What’s the point of a “medical system” if the people in the system aren’t actually going to think systemically? I mean, I can pretty much tell you exactly how my September 13 appointment at the Diabetes Care Center is going to go:

They’re going to do a bunch of lab tests.

Then they’re going to sit down with me and start up some long-term strategizing conversations. 

They're going to not-so-subtly suggest that I go on an insulin pump. They're going to chastise me for not regularly taking my pill to prevent kidney failure, or my aspirin, or the other drugs they've prescribed to prevent long-term problems. They'll probably want me to talk to a nutritionist so I can bone up on my carbohydrate counting. 

Here's what isn’t going to happen – at least not until I push the issue (mwaaahaha):

No one’s going to look at my medical record in the “system,” see that I’m dying of cancer, and so come in and make the following speech:

Diabetes is a chronic, long-term condition. You’re currently facing a much larger short-term problem. There’s no reason for us to waste your time trying to modify your behaviors to mitigate the possible effects of long-term, diabetes-related problems that you’re not likely going to be around to see. So aside from making sure you have access to the medications you need, is there anything we can do, right now, to make things easier for you? If not, we apologize for wasting your time.

That is what "systemic care" would look like. And frankly, until I get that kind of response, my opinion is that any talk of UW Medicine providing "systemic care" is complete and utter horseshit.

The medical systems aren’t designed to maximize the quality of your care. They’re designed to maximize the quantity of the system’s revenues.