Thanks! We’re working on building a much more comprehensive library of content there. I’ve recently moved to that site from About.com, and I have hundreds of articles, tips, etc. that we’re working on getting up.

Great blog you have. I’ve added you to my blogroll on http://www.WeAreAdvocates.

Teri

Yes, I know people with similar circumstances, and there are steps you can take to predetermine who will make those decisions for you. Whether there are advocates readily available depends on where you live. In many areas, hospitals have Social Services departments with personnel with staff who can help you locate an advocate. Your doctor may also know advocates in your area.

Another option is available if you have a friend whose judgment you trust. You can have a legal medical power of attorney drawn up. It’s a binding document that would allow that person to make medical decisions when you’re not able, and with that document, your family would have to defer to their decisions.

I think most people would prefer to have such decisions in the hands of a trusted friend rather than an advocate who might be a relative stranger to them. Whichever route you take, you’d have a legal document that determines who makes your medical decisions when you can’t. You need to make sure that document becomes a part of your medical records, both with your doctors and any hospitals you go to. It’s also wise to carry a copy of it in your wallet.

Hope this helps,
Teri

Best,
Matt

Have you heard of any circumstances like this and if so, are there any steps I can take–to have a competent advocate in case I need one?

Thanks so much.

Melanie Wood
mraeh89@yahoo.com

My experience as an advocate has demonstrated that many doctors feel that the encouragement of an advocate helps their patients become better educated about their health issues and thus better able to work with them as treatment partners in making vital decisions.

I’m sure this is the case with many conditions, but I can speak most clearly about Migraine disease and headaches since that’s where my experience lies. I encourage all patients to learn as much about their conditions as they can and prepare a list of any questions they may have for their doctors before the appointment, avoiding forgetting them or wasting precious appointment time. As someone else said, I tell patients to never, ever change their treatment or try even so-called “natural” treatments before discussing it with their physicians.

To the consternation of some doctors, but the delight of others, I also try to instill in patients a sense of being responsible for their own health and “firing” doctors who will not take time to answer questions and show no respect for the educated patient. After all, studies have demonstrated that educated patients are more compliant with their treatment regimens and have better outcomes.

I should probably say that I am not a paid advocate per se. I make my living as a writer, and often write content that teaches and encourages patients to advocate for themselves. When one of my readers or community members has a situation they cannot handle on their own, then I will involve myself as their advocate.

Teri Robert

I am currently working on my own. I’ve found a number of different models for providing what I call “clinical patient advocacy” — advocates who have professional healthcare experience. These models range from insurance companies that provide add-on health and wellness “advice” benefits 24/7 to eligible members, to stand-alone patient advocate “concierge” organizations that provide top-of-the-line (and expensive) healthcare advocacy services to members. Services for these models range from information about health, wellness, medical procedures, treatment options, to finding “best” doctors and facilities and “fast-tracking” appointments and making emergency arrangements for a member traveling anywhere around the world (including helicopter evacuation if necessary!).

I’ve opted for a more personalized practice, as well as one that does not answer to a health insurance company and also one that is more affordable. While I still need to find clients that can afford to pay me, I’m hoping that I’ll eventually be able to offer sliding scale and even pro-bono services, perhaps with research funding? While I believe everyone has the right to such a service, I am able to sleep at night for now because as more research shows that health outcomes improve and health costs decrease for those with the benefit of patient advocates, it is a role that will become more accepted and available to all. Of course the real dream is that people won’t need patient advocates because the healthcare system will be so excellent. That’s still a long way away. So in the meantime….this is my quest!

Thanks for dropping by! I’ve heard your home ownership metaphor often with a tweak as car instead of home - see http://www.newstarget.com/008226.html for a great car/doc spoof article.

Out of curiosity, are you working on your own or have you found good companies that are forming “stables” of advocates?

Best,
Matt

In addition, I teach people how to be smart healthcare consumers by knowing their rights and fulfilling their responsibilities as patients, finding high-quality providers, getting second opinions when needed, developing working partnerships with providers, staying informed, and being vigilant. Here’s another metaphor: As homeowners, let’s say, making repairs or renovations to a home, we know our consumer rights (expect quality services) and fulfill our responsibilities (by paying our bills), find good quality contractors for services, get additional estimates and plans, develop partnerships with contractors and expect quality work and results, and are vigilant to be sure that the project is staying on track.

Isn’t our healthcare AT LEAST as valuable a commodity as getting a nice addition to our home, buying a new refrigerator, or television?

Patient advocates are just as hopeful that the broken healthcare system gets reformed so that the dangers that patients face are minimized and avoided. We are using the skills and passion that we have to help people safely through the current system, while those with policy expertise and passion work on healthcare reform with our input.

Loren, as a general rule I’d argue it’s foolish to curtail free market forces. You’re right that medical “responsibility” plays a role here and shouldn’t be dismissed. In fact, the majority of advocates as I understand the industry are registered nurses and therefore reasonably qualified advisors. But let’s say for the sake of argument that they’re just self-educated experts. The way I look at an advocate is one more tool in a belt allowing one to think for oneself/protect oneself. And I’d expect most who hire them hold this view. Advocates are healthcare consultants.

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, and while pharma companies continue to profit, alongside their malpractice and health insurance brethren — 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