August 14, 2005

How hard it is to be a patient these days!

There's so much to understand just to try to decide what treatment you want. (The linked front-page NYT article features the UW Law School's amazing Meg Gaines.)


Bruce Hayden said...

It is a delimma. But about 3 1/2 years ago, my mother was diagnosed with ovarian cancer. The first Chemo regime (with drug X) worked great, shrinking the tumors, etc. The second, (drug Y), didn't do anything. and the tumors came back. Her oncologist suggested an experimental regime. My parents bought in. It seemed to be working miracles, shrinking the tumors even better than the first regime.

And then, she started losing feeling in her fingers and toes. Peripheral Neuropathy. She found herself shortly thereafter confined to a wheelchair. They terminated the third regime shortly thereafter.

Turns out, the third regime was a more conentrated, faster application, of drug X, used in the first regime. BUT, one of its known side effects is peripheral neuropathy. It turns out that she had had tingling in her fingers and toes during that first regime. The literature also suggested that the faster and more concentrated the application, the more severe the possible neuropathy.

It took me less than a half an hour to piece all this together, after the fact, starting by Googline Drug X and Neuropathy.

I do blame the Oncologist because by all indications, she probably didn't adequately warn of or screen for the side effects. But to some extent, I also blame my parents for not doing some research themselves.

In the end, it probably didn't matter that much - she died about 9 months later, not being strong enough to start a fourth chemo regime.

Bruce Hayden said...

The article mentioned that some physicians get frustrated having to disabuse patients of misinformation. And some look back fondly at the time when what they said was accepted as gospel.

But, to me, it is better for them and for us, the patients.

The problem, as I see it, of the omniscient doctor is that, in fact, they are really practicing an art, more than a science, in many cases. They are not, in fact, omniscient - rather that was adopted to make their practices easier.

The problem is that if you hold yourself out to be omniscient, then you had better be such. And, obviously, they weren't. The result was that the standard to which they were being held was unreasonably high, resulting in malpractice suits when it turned out that they had, indeed, made mistakes.

Much better, I will suggest, for a physician to, as Ms. Gaines' did, give alternatives with honest appraisals, and let the patients make the hard choices.

This is esp. true when you haven't had a chance to build a long term relationship with the physician. Why should you trust him anyway? An MD degree? Plenty of quacks out there with MD's.

me said...

Thanks for linking to that article. It is wonderful that Meg was able to survive such an incredible struggle. I've had a few experiences with respect to medical malpractice, and I do think the hype is misdirected. There are bad doctors, but I don't think that this is heart of the problem. We really need to start from scratch on how to design a health care system that works top to bottom and can deal with our aging population.

The lack of health insurance is a serious issue. Every one ends up subsidizing the uninsured, so I see no reason why this country cannot simply cover every one.

Clearly, if people took better care of themselves, much of health care would be rendered unnecessary.

Nick said...

The Tyranny of Mustard strikes again. Too many choices for a person to make right? It might be overwhelming, but I'd personally like to be the one making the choices that most affect my life.