From the e-patient blog Wednesday:
On a good blog, the comments are often as valuable as the post itself. (It's all about community, y'know.) A couple of comments on that post are thought-provoking, not the least of which is from Sarah Greene (manager of the Times online health presence).
But I also want to take a minute to appreciate the entire online Health section of the Times, which consistently grabs my attention with its mix of articles, blogs, reference materials, and multimedia offerings. I love reading the comments appended to some of the articles and wish that more articles could turn into such forums. For example, the comments attached to You Can Find Dr. Right, With Some Effort are as useful and thought-provoking as the tips outlined in the article.
The comment that really got me is from Christine Gray, a mother who experienced the rudest, most disempowering treatment by doctors who (she says) were annoyed that she wanted to see her daughter's lab tests, etc. Only when she got connected with a powerful peer patient community (on ACOR, where I found mine) did she learn that those same arrogant doctors had made several important mistakes, while belittling her.
You should go read Christine's comment. But in case you don't, I'll post my reply here, because something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. In this post I'm not talking about the financial aspect, or who has access to the best care - I'm talking about the simple ability to execute expected procedures competently.
Here's what I wrote:
Christine, thanks for your comment. The e-Patients White Paper e-Patients: How they can help us heal healthcare (PDF, wiki) details many such stories, but I'm frankly disheartened to hear that yours happened as recently as 2003.
As I talk with people involved in transformation of healthcare, and I raise various issues from that paper's research, I often hear "But we've already figured out how we're going to solve that one." Those people have surely never faced a loved one's medical crisis and experienced the consequence of the fact that it's not solved now. To the contrary, it's too often rigidly entrenched, as you describe.
Conversely, people not involved in transformation often don't want to hear the system's got problems - understandably. (It's like hearing your local fire department, whom you might need desperately one day, is a bunch of drunks.) In polite conversation we have a cultural taboo against saying anything like "These doctors blew it." Doing so often sounds like a kneejerk anti-establishment rant, or like the bozo who told me in May that "Chemo doesn't work. It's a fraud. All you need is ionized water." In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't.
I myself only read that paper in January, and as time went by I saw that there were several kinds of e-patient stories, and I wrote about them. Many stories tell of doctors who are helpful and supportive of participatory medicine, and many more tell of doctors who are like the ones you describe.
What people don't realize is that today patients have access to far more power-bestowing information than we did 50-60 years ago. But even then, Dr. Spock was excoriated by many of his peers for telling mothers "you know more than you think you do." Clearly the doctors you faced still don't agree with Spock, a half century later.
As much as I love my hospital, they made some serious mistakes in my cancer case last year. After my nephrectomy the nursing team forgot to remove my catheter on the specified day (apparently that was important), and when I came back in for a follow-up urinalysis at a critical time a few days later (to see if my remaining kidney was working ok!), the lab simply lost my specimen. I couldn't just do another one; the moment had been lost. Yet the hospital had no process in place to make sure this potentially vital specimen wouldn't get lost.
We all need to be aware that healthcare in general is extremely (and I mean extremely) behind the times, compared to other modern enterprises. In a modern factory, things simply don't get lost the way they do in hospitals, and the reason is simply that not enough hospitals have thought out how to prevent the loss, or done anything about it.
To be sure, lots of good work is in process. But there's not nearly enough of it, and many facilities haven't even begun the process, and many more don't even agree there's work to be done.
Then we layer on top of that the attitudes of the subset of doctors who think they're godlike - again as detailed in many e-patient stories. Certainly not all of them are like that - mine last year were wonderful. But as Christine's story shows, there's way too much of it still out there. Is that who you want caring for you in your crisis?
I was fortunate to encounter one of those in my 20s - a guy who took offense at my asking if I'd get a scar from the procedure. I should have run, but I figured a doctor wouldn't be unprofessional, right? Well, he was - to remove a tiny basal cell on my nose, he decided to do a large crescent-shaped skin flap, and he never did come see me to discharge me - I had to check myself out. And within a year he'd skipped town.
I'm not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn't be privy to our medical data, much less consider that we might have something to contribute. We do.
Many thanks to the Times for publicizing all these ways patient empowerment is happening.