The power of the internet to impact medicine

[SoonerTexan]

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.

I'm a little confused about this--while I can see how this would apply in a "But Doc, I'm sure drug X will cure my disease I read it on the internet prescribe it now" scenario, I don't see how it is an ethical approach in this situation.

They understand the risks. She knows she might lose the babies, that infection is a huge risk, and that the chances slim:

We almost lost our twins 72 hours ago. At any time things could change. I realize this. There are massive risks, huge hurdles to overcome. And we may not.
But that’s ok.
Our choice to fight and not induce at 18.5 weeks or any other time (unless I am in imminent danger or go into labor) is just that – a choice. And for the past 3 days, we continually had to fight for that choice. Over and over, shift after shift. Dr. after Dr. It was so hard to keep our spirits up only to be told every few hours how slim our chances are. We knew – but honestly we made a choice and wanted to stand firm in our decision.
Unless I was sick. Unless the babies died. Unless I went into labor. We wanted to fight for them. It’s all I can do. I have to.
Deep down, this isn’t about pro life or pro choice. Not really, although I know where I stand. But I also stand for every woman that walks in the doors of a hospital to have the SAME rights and treatment we expected. Regardless of what her decision is. To be treated as a valuable patient, to be cared for and talked to as a person with rights.
It was about being respected for the wishes and desires we had. Whatever they were. However crazy they seemed. As long as we weren’t doing anything illegal or putting ourselves into immediate harm, we simply wanted to be given the respect of having our choice to fight as long as we could for these two to be respected.

I don't see anything wrong with this. She listened to the risks and prognosis and made a decision. That's her right as a patient.

Here's the whole thread. I think there are some assumptions being made about this situation that aren't fair:

http://www.hormonal-imbalances.com/2...-social-media/

but that clearly some expectations/feelings/beliefs were miscommunicated by BOTH parties in either previous appointments or when she was admitted to the hospital.

I gathered from some of her tweets that her OB was not available for whatever reason during the first few days and has returned now.

[Bittersweet]

I have nothing intelligent to add just that this whole thing makes me very uncomfortable. I’m as pro-choice as you get … but we’re not talking about an appendectomy here. Plus, there are success stories following pre-term rupture of membranes. I’m sure they’re unusual (especially at < 20 weeks gestation) but I also understand that it’s natural to hold onto hope that your babies may be one of those rare, miracle cases. Termination isn’t required and prenatal care isn’t withheld in cases where the fetus is deemed to have a condition that is incompatible with life. I guess I don’t understand why this is different.

[diggitydot]

Termination isn&rsquo;t required and prenatal care isn&rsquo;t withheld in cases where the fetus is deemed to have a condition that is incompatible with life. I guess I don&rsquo;t understand why this is different.

My guess is because time is limited before infection takes over and compromises both the mom's health and future fertility. While the prognoses for the babies won't change, the mom's health could take a significant nosedive.

It would be different, medically, if she just had a small leak instead of ruptured membranes. Small leaks can be dealt with at this stage. There is nothing that can be done with ruptured membranes. Infection WILL set in and her body will go into labor long before those babies are remotely viable.

I agree that all that can be done for her and her babies should be done. I wish there was some sort of treatment that could help.

[diggitydot]

I'm a little confused about this--while I can see how this would apply in a "But Doc, I'm sure drug X will cure my disease I read it on the internet prescribe it now" scenario, I don't see how it is an ethical approach in this situation.

There aren't any treatments that will accomplish what she wants to accomplish. Maternal health has taken huge strides in the last couple of decades, but it still can't make 18 week fetuses viable or stave off systemic infection for more than a couple weeks when membranes have ruptured.

People have unrealistic expectations of what medical science can and cannot accomplish. I think TV does play a role, but not those ridiculous drug commercials. It's the "ER", "Chicago Hope", and "Grey's Anatomy" shows that make people think miracles and imaginary treatments are the norm.

I sincerely hope that this woman is the exception to the rule and that her babies can cook for 6 more weeks before being born.

[Ladybug]

Maybe she needs the peace of heart and mind to let things naturally unfold rather than feeling like she induced labor and quickened their death. I think she needs these days or weeks to let go and say goodbye peacefully. Should that be a choice for patients? But how much risk and liability should an MD be forced to accept via social pressure or legal pressure? Can an MD wash their hands of the legal liability by saying this is against medical advise but still medically support a patient's hope and willingness to accept future risks? I don't know if that's ethical either. Her medical team is in a sticky mess. If a threat to mother developes then they will have to defer to the MDs advise or leave the hospital IMO. They have a little wiggle room because there is no immediate threat, and I think it's compassionate to extend her that wiggle room when you can. However I would bring in hospital attorneys to explain that if a grave threat to her health developes she will need to comply to medical advise or leave...tweet mobs or not.

[diggitydot]

100% agree.

[HouseofWool]

I haven't read the blog, but I cannot get behind what she did or the thought that the hospital will be expending $500K upward for care that is futile. Worst is that it will most likely not be reimbursed because it is not within the standard of care. So, who eats that bill? The family? The hospital, the doc? This kind of stuff is a huge part of the reason that healthcare is wildly expensive.

[TulipsAndSunscreen]

But is it futile? Others have posted in support that their miracle babies survived in similar situations. (obviously we can't know the whole story but is is possible?)

I feel for her. And I worry about the tweet mobs. HoW - you're right to bring up insurance. I don't know what happens in this case. Would insurance really be able to deny care?

[HouseofWool]

But is it futile? Others have posted in support that their miracle babies survived in similar situations. (obviously we can't know the whole story but is is possible?)

I feel for her. And I worry about the tweet mobs. HoW - you're right to bring up insurance. I don't know what happens in this case. Would insurance really be able to deny care?

Yep, they sure would. Yesterday I was talking to an insurance company about a claim that was denied, for which we had prior authorization. I was told that there are codes for which they automatically deny the claim. NO MATTER WHAT.

Statistically speaking, these babies, if they do survive, will never become fully functioning people. How is it right to insist that you do everything possible to have a child who will never walk, talk, or even have bladder control. I know I sound callous, but I cannot imagine doing that to my child. It seems so selfish, more about the parent than the child.

I think I will step out of this now because I know I am sure to rile some people on here.

[diggitydot]

Insurers are legally capable of denying anything that deviates from standard of care. The couple would be on the hook for everything the insurance company decides not to cover.

Did those other miracle baby stories include ruptured membranes at 18 weeks? If not, it's really an apples/oranges thing. There are loads of other conditions that pop up during pregnancy that while devastating, can be dealt with, even if odds are against them. This poor gal's odds are hovering near zero for these sweet little babies making it to 24 weeks, much less surviving. Unfortunately, it is futile care.

[Ladybug]

Yet we do technically pay and provide a lot of futile care (cancer, esrd, etc.). We dont usually terminate them as efficiently as possible to save money or convenience. I'm not saying this was her medical teams motives, BTW, but did she initially receive the same respect and compassion that we strive to extend in all end of life situations?

[TulipsAndSunscreen]

She's posted an update on her blog if you care to read:

http://www.hormonal-imbalances.com/

Apparently it was a "resident miscommunication" according to the hospital.

[diggitydot]

Her update has a little more info and seems more inline with reality, but there are still some holes and bad info. The first 24-72 is not her most likely window for an infection. And the distinction that the resident who treated her "wasn't a hospital employee" was weird. It's splitting hairs because that resident works at the hospital even if their status isn't "employee".

Eh, whatever. I hope her babies make it.

[ladymoreta]

And the distinction that the resident who treated her "wasn't a hospital employee" was weird. It's splitting hairs because that resident works at the hospital even if their status isn't "employee".

That's probably just how they explained it to her for their CYA. Most people don't understand residency enough to get that.

I agree that I hope her babies make it, but scenarios like this will likely have to be prevented if/when the government gets more control of health care.

[Thirteen]

Tiptoeing in here.
Disclaimer: I haven't read all the posts, and I also haven't read the story. Stuff like this torments me for days.

But...

I was 39w3d, had PROM, and was put on a clock. I knew I would be, and I literally bargained my way through the entire L&D... In fact, things would have been quite different if I had: a) a doctor who wasn't a close friend and colleague of DH's, and b) if I had delivered anywhere else but his hospital.

I say all that to say this: I was considered full term, a medical spouse, and I still had loads of pressure due to concerns of infection/risk to DS.

I am convinced that you must pick your doctor carefully. I also think this conversation is more about "when life begins" than anything else, and that's why it touches everyone in a different way.
If this woman has been fully informed of risks of infection, viability outside the womb, and chooses not to terminate, can the doctors say she did so AMA, and wash their hands of the consequences/turf her to someone else?




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