Saturday, January 13, 2007

On informed consent

At the outset, let me state that I firmly believe most Americans do more research before they buy a car than they do on their own health care. Not only is it a shame, I think it's scandalous and I can't believe no one makes a bigger fuss over it. What the fuck, people? It's YOUR body. Get to know it. Take charge of its care and feeding. Well, maybe not so much with the feeding (as she mows her way through another Lindt truffle).

This being said, it can be really, really hard, perhaps bordering on impossible, to obtain true informed consent. For most people, the word of their doc is good enough and is easily traded for personal knowledge. So maybe it shouldn't be a surprise to me that Average Joe knows more about the 50" plasma tv he's about to buy than the flex sig he's to undergo Tuesday next.

When I was pregnant with Perp, I had crazy frequent Braxton Hicks contractions from fairly early on, around 19w, give or take. I had no previous experience with pregnancy, and you could say I wasn't entirely in tune with my uterus unless it was involved in its favorite, complicated sloughing procedure. So I trotted off to L&D to be monitored.

Nice Nurse checked me and there was no cervical change, nothing to indicate anything was Going On Down There, but had me wait for a doc to be sure. I leafed through a magazine and half-heartedly watched the montior from time to time. It is oddly hypnotizing, I'll admit.

Young Intern flapped her stick arms in distress when she saw my contraction pattern (every 2-4 minutes, which I could have told her, had she asked).

She scuttled off to kibbutz with the resident and came back an hour later (I shit you not, there was no one in labor and everyone else was chilling at the nurses' station) she came back and declared I needed "a medicine to relax your uterus and stop it from contracting." Despite no cervical change. "It will make your heart beat kind of fast and you may feel a little woozy." Because it's an asthma medication. Off-label. Not approved for obstetrical use.

Do you know anyone who takes Neurontin for peripheral neuropathy? Did you know it was tested and approved as an epilepsy drug?

Methotrexate? Approved for treating neoplastic disease. But not chemical abortions. Or multiple sclerosis.

How was I supposed to give consent? I accepted the terb based on the information I was given. It never occured to me to ask if the drug was approved for my use; I just assumed it was. Why would I think otherwise? I had no access to anything supporting or contradicting her claim. All I had was her word and her limited, get-the-patient-to-agree spiel. She made me believe the pregnancy was in jeapordy. She swayed me with fear.

So I accepted and she gave me the shot. And when I got home and looked it up, I was beyond pissed that she would gloss over several important facts regarding its use, and present it as necessary despite clear indications that it wasn't.

How are patients supposed to wade through the morass of selective information so many docs offer? I am not, of course, suggesting that all docs are like this. And I understand that expediency is important. But it is equally important, if not moreso, that patients understand what is truly at stake. What the true risks are. Whether the drug has even been tested for this particular use or if it's being prescribed because someone noticed a salutory effect and hey, why not use it that way even if we don't KNOW it's okay for this patient group (hello*, Femara)? Aren't indications listed for a reason? Isn't testing done for a reason?

I'd love to be able to say that evidence-based medicine is the answer but of course, women are chronically under-researched. Even in obstetrics, apparently. When 1 in 5 prescriptions is written for nonapproved use, perhaps it's time we included the patient in the equation and asked how they felt about being part of an uncontrolled experiment.

*I'll give you a nice prize if you can find mention of letrozole's approved use on that site.


Devan said...

wonderful post. It is very difficult to give informed consent, because most of the time you don't have the time or opportunity to research your options and can only go by what you are told.
I know lots of dr's don't bother explaining anything and just say "take this" and most people will. Fear does play into it a lot - for me ESPECIALLY when I'm pg!
Well said...

Targetgirl said...

At the risk of sounding gushy, this is a great post. I'm so glad I found your blog! I would write about this stuff if I had one that wasn't family oriented. Maybe I will do one next year. But I digress.

I was more informed than L's doctors about his reflux. Still am. It is frightening, but that is another post. They induced me with pit when my water broke even though I had contractions start 1/2 hour before the shot. Why did I consent? I was afraid. He was early and I did no research on induction because I was going to give birth w/o meds in a birth center. I regret it deeply, and I consider myself an informed customer. Fear is powerful and it is weilded on pg women all the time. Boooo to that.