The power of the internet to impact medicine

[TulipsAndSunscreen]

http://www.babyrabies.com/2012/04/th...-the-internet/

The following was a link on a blog I read. The gist of it if you don't have time to read it:

A female blogger is 18 weeks pregnant with twins and her water breaks but labor does not start. She is told by the hospital (UMC El Paso) that the babies will not survive and that she should induce labor, etc. According to her, she is bullied and treated inappropriately when she resists efforts to induce her until she reaches out to her online community who immediately begin a twitter/facebook/blog broadcast on the hospital and her treatment until she receives care which may or may not save her sons. The hospital has publicly stated that they're happy this treatment was brought to their attention but that's obviously a PR office.

What are your thoughts on this?

[diggitydot]

Lots of side-eye, here. I just can't wrap my head around anyone who tweets about losing their baby while in the middle of the health scare.

I think the gal's blog is a good example of several things.

1.) Not all docs connect emotionally with their patients. Yes, some come across as assholes.

2.) Many patients have wholly unrealistic expectations of modern care. Just because you want to try something doesn't mean your doctor has to either agree or allow it to happen when, in their professional opinion, it is ineffective.

3.) Hospital PR and attorneys will quickly kiss ass to avoid even the whiff of a lawsuit.

4.) Some people will ALWAYS feel persecuted for their beliefs, regardless of whether that is the case or not.

5.) Google is an asshole and gives people *just* enough information to be dangerous. Or assholes.

[TulipsAndSunscreen]

While I can completely sympathize with wanting to save your babies and she may indeed have been treated unfairly, I'm extremely wary of the power of the internet to demand treatment for someone since the general public has little understanding of medical issues. I can just see the spiral of people tweeting and then the general public bothering hospitals over every instance where the patient wants different treatment.

At the same time, I guess she felt like this was her only recourse to get her story out and if I were in her position and desperate to save my babies, I guess I might do the same...

[SoonerTexan]

I saw this yesterday...mixed feelings.

I just can't wrap my head around anyone who tweets about losing their baby while in the middle of the health scare.

I see it as similar to posting here in labor Just a different group of online friends.

[diggitydot]

I think posting to friends (some of whom you know IRL) while in labor is in a completely different universe than tweeting to everyone about the death of your child(ren).

[SoonerTexan]

But they aren't dead...they are in an intense medical situation. She was asking for thoughts and prayers from a group of people she interacts with online regularly. I know for a fact that has happened here. It's not like this is an early miscarriage either...she is visibly pregnant.

[diggitydot]

At that point in the timeline, she was being told that she was losing her pregnancy. Regardless of whether a miscarriage or stillbirth, she was going through a huge ordeal that could alter her life and that of her family forever. I just can't fathom broadcasting that on Twitter.

The death or potential death of a child is a life-altering experience. Tweeting it is insane.

Interacting with people on Twitter is NOT the same as support groups. Shit, I can get a Happy Birthday retweet from Wil Weaton, but that doesn't mean he knows or cares about me or my family or that he'd board The Bus to deliver a well-deserved smack down. It's a different world.

[SoonerTexan]

Sorry, I still completely disagree. I personally don't use twitter, but I do know people who use it (or other forms of online interaction) in a similar way to the way we view IMSN. Obviously she did have people ready to "board The Bus" for her (whether or not you agree it was appropriate) as the hospital apparently received over 50 calls...more than random retweets.

I haven't been in her situation (and hope to never be), but I cannot fault her for reaching out for support when she felt alone, scared, and bullied (whether or not you agree it was bullying) through a medium she was familiar and comfortable with.

Hell, how many people (spouses included) might think we are crazy for the things we share on here?

Also, I'd argue that she wasn't (and obviously still isn't) viewing this as the imminent death of her children. She is viewing it as a fight for their lives. I think there is a difference.

[diggitydot]

The difference, for me, is that her Twitter isn't private. When we have sensitive topics to discuss, we can use more private boards. Her Twitter post was a free-for-all to anyone and everyone. She broadcast exceedingly sensitive information to everyone with access to a computer and the inclination to read her tweets.

I'm sorry, she rubs me the wrong way. And no, I don't really see her as being bullied. I think she was highly emotional (justifiably), and maybe not really understanding what she was being told. Maybe her doc was a giant ass who lacks communication skills and every semblance of human empathy. I dunno. I kind of have a hard time believing that an entire ward would be so unsympathetic to parents with a potential stillbirth, though. But being an ass doesn't equal bullying.

We have a small part of one side of the story. And I take it with a healthy grain f salt.

Truly, I wish the woman and her family well. I sincerely hope she and her kids are all healthy and live long lives.

But there's something about her that is "off" to me.

[TulipsAndSunscreen]

Regardless of my feelings on the appropriateness of her tweet, I was again horrified at the vilification of doctors in the comments section of the thread. It's like people think that doctors are out to get them!

[diggitydot]

Totally agree. I don't think I've seen the term "standard of care" misused so much, ever.

[Ladybug]

I think different MDs have different thresholds and some might have handled it differently. It underscores the importance of choosing a doctor that shares your viewpoints so when a situation like this arises you're on the same page. I hope our OB spouses will chime in. I'm curious what the standard of care is and what insurance will pay for. Basically, are there other options that were not offered? Do patients have the option to pay for care not covered by their insurance?

It's an interesting case, and something the medical community will need to address in this media-saturated culture. I think the insurance companies will ultimately have to define the choices available to patients. Scary.

[Pollyanna]

I will simply say that her experience is NOT unusual and absolutely everything she said rings true.

Like Ladybug said, choose a doctor that shares your viewpoints. Don't find out when you are in crisis that your doc is not in the fight with you or is the kind more interested in punching the clock than taking care of their patient. At the same time, don't assume you or your doula or your mom, etc is more knowledgeable than your doc.

[diggitydot]

DH is post OB call so I asked him about this when he woke up this afternoon. (He's almost done with his OB fellowship and treats very high risk patients.) He said there's pretty much nothing that can be done. Infection will set in. It's not a matter of if, but when. Mom's body will eventually go into labor that they won't be able to stop and babies aren't viable for at least another 6 weeks, minimum.

That makes me so sad for them.

[scarlett09]

Didn't read the blog, but I agree with DD. I can't imagine Tweeting, FB'ing, etc. etc. while in the middle of a personal crisis like that. I don't think I would consider normally progressing labor to be a personal crisis, so I see nothing wrong with our members posting here updates while they are in labor. (I will tell you that when it is my turn, I will be too busy trying to kill DH to update here, haha!)

What bothers me more is that people know her real name and she is releasing all sorts of HIPAA protected info out into the world for all to see. And who the hell calls a hospital about someone they read about on the internets to advocate for them? And why on earth would the hospital even remotely care about or even listen to these people for more than 15 seconds? If they called asking about the care of this chick, I would be like "HIPAA does not allow me to give any information out about former or current patients" and hang up. Ridic. Yeah, I get the whole lawsuit/PR angle, but why even bother to give these crazies the time of day?

There will always be doctor bashing, and I believe the internets have made it MUCH worse. Before VP Gore gave us the WWW, if people had a medical question, they asked a health care provider or maybe went to a library and read a book about it. Now people think they too have a medical license after consulting Dr. Google, WebMD, and Cosmo. And if we're talking about media, let's not forget all of those commercials for every drug known to mankind. People are all armed with information from these sources and go running to their doctor about having XYZ. Well, when the doctor doesn't agree with them because of his clinical knowledge about and years of experience with XYZ, they freak the f*** out. Dr. Google and Dr. Oz said they have it, so clearly my doctor has no clue and they go back to the same WWW that gave them the diagnosis of XYZ and tell everyone how much their doctor and all doctors suck. When really, they are the ones who suck at having an informed, adult conversation and listening to the expert, and instead act like a spoiled child.

I certainly don't have an issue with all of the media out there, because in some ways it has lead to a more informed public. But when people assume that the information they find online trumps the knowledge of their doctor, that is when I take issue with the doctor bashing.

And maybe her docs are approaching this from the POV that whether it is 18.5 weeks or 24 weeks, those babies' chances are super slim, so why prolong their parents' sheer agony any longer? I am not saying that this is the right or wrong POV, but that clearly some expectations/feelings/beliefs were miscommunicated by BOTH parties in either previous appointments or when she was admitted to the hospital.