It’s Not “Patient Empowerment” If You Feel Powerless: A Story About Today «

March 4, 2010
Posted by Elizabeth Han

It’s Not “Patient Empowerment” If You Feel Powerless: A Story About Today

This is a story about today.

GAns

So you’re a patient. You’ve been waiting a long, long time. This place never gets better. Even though this is “your appointment” and “your day”, despite knowing that the doctors are so, so nice — wonderful, really – you find yourself cringing at the unmistakable “busy” in the air.

We’re two hours behind schedule, you hear someone whisper from behind a pulled curtain, and you start to feel foolish.

Maybe you shouldn’t ask this question, you think. Maybe you need to do some more research…

Which is ridiculous, since research is all you’ve been doing! Even though you’ve been saving this question, carefully Google-searching, bookmarking, even scanning scholarly articles in foreign journals about the wrong gender and the wrong age bracket.

The unease unclenches and clenches again like a fist in your stomach.

Finally, they come in and probe, and smile, and reassure – doing their job you know — but still you don’t ask the question.

Why not?

You wonder how they would feel about the anxiety that has led you to Google. You wonder if what you know could possibly stack up against what they know.

Well, you really haven’t looked at everything… Maybe the forums have something to say about it. Try again next month?

So you go home. Your transport is here anyway. It’s always on time. And so is the internet.

- -

Today, a question was not asked.

Problem is, today could be any day.

We who work in health care may still be only a small slice of people’s lives — and I sincerely hope that their relationships with us will never define who they are — but our advice is shockingly weighty. It’s sometimes even alive, if you can imagine that.

Patients take it home with them. And it probably does live with them.

Therefore, I am disappointed when a question is not asked.

I am not sure if this disappointment has a direction or whether it is only a kind of haze – suspended, obscuring, and not quite right. But I think it means something.

It means that we have built fences. Psychological fences. We are told that good fences make good neighbours, but I for one don’t want to talk to people through fences. When we erect too many fences, at some point somebody ends up taking the path of least resistance. Like avoiding communication and seeking out answers on the internet.

A path that perhaps provides short-term relief but eventually pretty much leads to more speculation, uncertainty, anxiety.

fence

(Image: Makz on Flickr)

I’m not saying the internet is evil. Of course not. I’m a huge advocate of patient empowerment and e-patients. And online research and tools most certainly can help inform patient decisions, as well as provide a certain level of community and emotional support.

I just, at times, become wary of curiosity unchecked. I hope that no matter what they discover in their research – no matter how busy and efficiency-obsessed health care workers may look on a particular day – that patients will continue to feel comfortable discussing their online findings with us.

To give a related example, this brings to mind my recent post on Twitter + Group Medical Visits. There, several readers brought up the utility of a physician being aware of Twitter trending topics within the group between visits, so that they can be further discussed at the next Group Visit with input from a medical professional. So while it’s excellent to have more conversation overall, I hope that internet conversations will not be disjoint from in-person conversations between doctor and patient.

Ask the question.

If the description of your prescribed drug in a paper from Medline is making you feel nervous, speak up. If your email list of fellow (insert condition here) patients stumbles upon an interesting concern, let us know.

It’s really not “patient empowerment” if you feel powerless.

Support for Doctor-Patient Email: Ontario Still Lags Behind

5 Comments

Posted Under Doctor-Patient Relationship Ethics & Professionalism

http://imnotkurtz.wordpress.com/ Vicki

Interesting post! Back in 2007, a friend and I volunteered at a children-with-diabetes conference in Florida. There was somebody there employed by a big pharma firm who was trying to curb diabetes by repressing the immune system. My friend and I thought that was very counter-intuitive and wanted to know more about what he was doing, so we asked. He belittled every single question we had for him, even though they were really quite reasonable. We were both fairly confident in our knowledge and intellect and so took his reaction with a grain of salt, but I can't imagine how difficult it would be for people who suspect that something with the research might not be quite right but are worried they'd sound stupid if they asked about it. Cheers!

http://www.hospitalsongs.com/ Elizabeth Han

Yes, there is definitely a tendency in medicine to be reactionary in that way. I don't know what can be done besides to educate both patients and health care workers – the former to document the credibility of the online sources they find, and the latter to be open-minded about discussing. It will be an incremental shift, but I think it will happen. I was reading about some physicians who are using the note-client Evernote to store interesting journal articles and blog posts that they feel certain patients would want to look at…something like that could be the catalyst for a 2-way sharing of online information and break down the psychological barrier.

http://patients.about.com/ Trisha Torrey

Elizabeth,

Thanks for taking a look at the unempowered patient – which describes the majority of patients, no matter what country (Canada, US, others) you are talking about. Even among those who feel like they have their medical care under control – it may be someone else's control it's under, not their own.

Patients need to understand they play a vital role in their own care. If they don't ask the relevant questions, they can't play that role successfully.

That said, it's a massive mindshift in the way we have traditionally approached care. The doctor DID used to be God! But he or she can't be counted on for that any longer — and I'm guessing that's just fine by most doctors.

Unfortunately, too few doctors are as enlightened as you are about the patient's need to know. Unless we have had a longer term relationship with you, the doctor, to begin with, we have to take a guess at how you will react when we ask questions. Too often we have been belittled, or brushed off, or simply ignored. In the few minutes we have with you, we don't DARE guess wrong at how you will receive the questions…. so it's easier just not to ask.

I'm not saying that's right. I'm saying it's reality.

Thanks for posting such an important point.

Trisha Torrey
Every Patient's Advocate

http://www.hospitalsongs.com/ Elizabeth Han

Trisha, thank you for your thoughtful comment! Indeed, I don't expect any sudden paradigm shifts soon in the medical profession re: e-patients. The change will need to be initiated by enlightened individuals on both sides of the relationship, who will hopefully inspire others by example. Interestingly, the March 4th issue of NEJM published the results of study indicating that despite the rise in popularity of the internet, patients' trust in their doctors has increased since 2002, while their trust of web health information decreased. Furthermore, while patients often turn to the web first for what they perceive to be minor inquiries, they are much more likely to take the results of their search to their next doctor's appointment. My blog post was inspired by some real-life experiences, but I am glad to note that their are some trends showing that these disappointing stories may be on the decline. As an aside, I am a fan of About.com's resources for empowered patients and Medicine 2.0 – keep up the excellent work!

Alex

Nicely said. I always find I'm holding people back when I have to ask questions, though I do ask a lot. The last time I went to see a specialist I had stocked up a good 10 or so questions (and a few more that arose after I heard the answers) to ask over the 3-month waiting period. The specialist was surprised and impressed that I actually had so many questions (questions, which I really think anyone in a similar situation should have been asking), so I'm with you there. We should have a health care environment where asking questions is encouraged, especially with specialists (who are usually the first ones to shut you down) because, for the most part, GPs are ignorant on all these kinds of specifics.