Every Patient's Advocate

An attack on patient advocacy?

Yesterday, I responded to a post at “punctuative!” — called – Patient Advocates aka Healthcare Rangers by Matt Winn. Matt, who is a venture capitalist, was commenting on patient advocacy as a relatively new service provided to patients. My response was simply a thank you — because he cited some of my work.

Today there is a response from Loren. Loren doesn’t provide any credentials, but Loren seems to think patient advocates shouldn’t exist. He says that instead, the healthcare system should be fixed. Also, it brings up too many legal questions. Further, since not everyone can “afford” an advocate, it hardly seems fair that anyone should have one. You can read his entire response here.

As those of you who read any of my work know, I just can’t sit still for that kind of — ahem — reasoning. (Yes, I’m holding my tongue and being polite!) It’s simply b*llpooky!

Here is my response…. see if I covered it pretty well?

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Loren,

All your well-thought-out reasons AGAINST a patient advocate system are, in fact, the very reasons a patient advocate system is so necessary.

Here’s a metaphor — see if you can picture yourself in this position: you are visiting another country where the language and customs are completely foreign to you. You are sick, and scared, and find yourself alone, in a hospital or other location where, supposedly, someone is going to help you. People are talking AT you, but you don’t understand a word they are saying — except, on occasion, they nod their heads, smile, pat your head, and you feel a bit safer, because they seem to know what they are doing. The next thing they do is hand you a pen, and a piece of paper and clearly they are expecting your signature. (This is what patients experience every day.)

You ask if anyone speaks english. You ask for a translator. Nothing. So you cross your fingers, sign the paper, and hope for the best. Then they take you to an office where they are holding out their hands, and you realize they expect you to pay them. You find out that nothing will be done until you give them the money they charge — in whatever their currency is — and you don’t have any way at all to explain about health insurance because you have no idea whether you are covered for whatever it is they’ve decided to do in whatever country you are visiting.

What you don’t know — because you are now so horribly confused — is that you have cancer, and if you don’t have immediate surgery and follow up chemo, you will be dead in weeks.

How could that situation be improved for you? A translator would help. The ability to ask questions of the providers would help. Access to resources for learning more about what is wrong with you could help. Clearer access to health insurance information would help. Someone to help you slog through the information you needed to make your own choices would help.

Those are the things patient advocates do every day.

By YOUR scenario — you, the patient, would have had to wait for the world to decide it was time for everyone to speak english (so you could understand what the doctors were telling you), or wait for the politicians to straighten out the government mess, or for the legal eagles to figure out how to fix the laws, or the insurance providers to get their acts together. Or, you’d have to wait for everyone to have equal access to advocates because — God forbid — no one should find help because everyone can’t find help.

By that time, your cancer would kill you. You would be looooong gone. Shoot — at that point, your CHILDREN will be long gone!

I totally agree that the American health care system is a completely dysfunctional system that needs to be fixed. No question. But while all that dysfunction is being sorted out, discussed, debated — people are dying, many of them needlessly.

Even then — even IF/WHEN all that gets cleaned up and straightened out, you’re assuming that doctors will buy-in to the notion of patient involvement/ input/feedback. So far? Most don’t. You should SEE the email I get, and the stories I hear.

One last point to make. Had I waited for the fantasy-land you described, I would be dead. Because it was patient advocacy — one single patient advocating for herself — that kept me from undergoing chemo for a cancer I was diagnosed with — and didn’t really have.

Gee, I’m glad I didn’t wait for the dysfunction to sort itself out. And the hundreds of patients I have helped since then seem pretty grateful I’m here to advocate for them today.

Trisha

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