Wednesday, July 4, 2012

The Freedom to be fully Informed

Being Independence day, I felt the need to address the notion of freedom.  Many out of hospital birth advocates feel that regulation will infringe upon their choices in birth, somehow limiting their freedom.  They feel they have the inherent right to make decisions for themselves.  While I don't disagree with making educated choices or the right to do so, I do think the inconsistent and unregulated information being disseminated to expectant mothers about all the great things out of hospital birth has to offer, without honest discussion of risks involved, is more accurately taking advantage of women in order to promote an ideal.   

What about the right to be fully informed?  What about the freedom to make choices without being fed half truths and ideology?  What about standards to ensure true informed consent happens so that all women can make an educated choice?  Giving consent or making a choice based on manipulated information, isn't making a choice at all.  I have to point out further that mothers are making the best decisions they can with the information they do have, and trusting their caregivers to offer ethical, accurate information.  This is not a matter of "not doing their research", it's a matter of purposefully only giving information to support certain claims and practices.  The misleading practices and information I'm referencing are being presented as being the whole story, when in fact they are not. 

A blog reader and anonymous ex-apprentice midwife recently asked us to share her thoughts about a recent Group B Strep post.  Her thoughts were insightful and frightfully accurate.  I couldn't help but identify with the kind of "informed consent" she illustrates in her writing, the kind that some would call sly manipulation.  It's the same "informed consent" women are getting about ultrasounds, gestational diabetes testing, and numerous high risk scenarios (including breech deliveries)...half truths, underestimated risk, and misrepresentation from too many out of hospital midwives.  Read for yourself and see what you think...informed consent or manipulation...

"Midwives will carefully and painstakingly explain that GBS is a type of bacteria that is present in 30% of all pregnant women and that it causes no harm to the pregnant women. Then they explain that sometimes newborns contract GBS during birth, and some of these babies get sick, and then a small amount of these babies die from GBS infection.

Midwives will review the CDC recommendations with their clients – that IV antibiotics are administered to all women in labor who tested positive for GBS during their pregnancy. They might then add their own commentary about how most of the antibiotics administered are completely unnecessary because most of the babies born to GBS positive mothers will not become sick from GBS.

Midwives will tell their clients that until 2002, the CDC offered women a choice – they could opt for prophylactic IV antibiotics OR IV antibiotics only when additional risk factors were present. The risk for developing septic GBS infection in newborns increases with low-birth weight babies, babies born at or before 37 weeks of gestation, or during labors when ROM has exceeded 18 hours. Midwives will leave out that the reason the CDC switched to the IV antibiotic prophylaxis recommendation only is because is more effective at preventing newborn sepsis than the risk-factor based strategy.

These two options will be presented equally – sometimes along with this: “If you know that you will refuse antibiotics in labor regardless of your GBS status, ask yourself whether you want the GBS screening at all. Regardless of a woman’s GBS status, we will transfer care if risk factors develop or signs of infection become apparent during labor.”

Midwives will present alternatives: argh, the garlic suppositories, courses of oral antibiotics during pregnancy (with MD collaboration), probiotics, Hibicleans douching during labor, or stating that they’ll seek out antibiotics per the 2002 (outdated) recommendations if any of those risk factors occur during labor.

Midwives will provide this informed consent and ask parents to make a decision. Some parents will opt to be tested for GBS, others will refuse. A consent form documenting the parents’ decision will be signed. For the mothers who test GBS positive, they will be given another choice, would you like to go to the hospital for IV antibiotics or would you like to consider IV antibiotics only if other risk factors are present. These mothers are in their third trimester of pregnancy, are attached to their midwife and idea of home birth, and leery of what seems to be excessive intervention in hospital practices. They will think opting for IV antibiotics during labor if risk factors are present is a reasonable option.

Some midwives will offer the Hibiclens douching during labor. And for the parents that choose this treatment (which does have some limited evidence to support it – and is not without its own set of risks), it will be used in a pretty half-assed manner – and the schedule of douching (every 4 hours) will go by the wayside once labor becomes active.

Some women will go into labor at 37 +1, or have PROM at 37 +1 – (GBS colonization increases the risk of PROM) and there will be no discussion of how there are now increased risk factors. The woman will be treated like any other woman in labor. She will be allowed to wait until labor starts. There will be no discussion of her baby’s estimated birth weight or gestational age. There will be no discussion of increased GBS infection in babies born early. There will be no discussion of having to transfer at 18 hours post ROM for IV antibiotic treatment, as discussed (take note, but not explicitly consented to) during prenatal care.

After the baby is born, there will be no increased duration of time for monitoring the baby for signs and symptoms of infection. There will be no extended immediate postpartum presence (which in a home birth practice would be staying at the home for 6-12 hours after the birth). There will be no additional visits to the family’s home during the first hours and days postpartum – only the standard home visit at 24-48 hours postpartum. Some midwives provide information regarding early signs of respiratory distress (nasal flaring, grunting, increased respiratory rate, difficulty feeding), and assign the task of assessing the baby to the postpartum parents, but most do not.

The midwives will hedge their bets that *this* case of a GBS positive mother will not result in a baby with a life-threatening infection – because statistics are on their side. It’s not that midwives believe they are putting their patients at increased risk. They themselves don’t really believe the risk is real.

And this brings up one of the major problems with “professional” midwifery: that they are not acting like a group of professionals. A professional organization should provide standard of care guidelines and evidence-based practice guidelines based on scientific evidence. Midwives should not be left to their own devices to scour the medical research and understand what is and isn’t an increased risk. And some of these complications are so rare, that midwives will rarely encounter them in their small practices. But the profession *will* encounter these complications – and any adverse outcome encountered by one midwife will reflect on the entire profession, and, not to minimize this point, cause harm to the people they serve: women and babies. THAT is why there are practice standards. Or should be.

In a nutshell: home birth midwives don’t risk out GBS + mothers because they have no professional practice standards.  Well, I take that back, they do have practice standards, see above."

This is the kind of "informed consent" that women have been taught to believe is "educating women about birth, empowering women, and giving women "choice".  What many women aren't realizing is that they are not choosing among safe options, they're being  manipulated into a false sense of security by people that are practicing by their own rules.  Too many midwives are taking a gamble with the lives of the women and babies they serve, some knowingly doing so, and others because they don't understand the severity of risks involved.  

No matter how you look at it, functioning without consistent standards of care and without adequately informing women is unacceptable, and is infringing upon our right to have quality care, honest and accurate information, and a birth that is as safe as it can possibly be regardless of location.        

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