Consenting to Harm: Treatment Options and Informed Consent

American Heritage Dictionary (my personal favorite) defines treatment in a medical context as

a. The use of an agent, procedure, or regimen, such as a drug, surgery, or exercise, in an attempt to cure or mitigate a disease, condition, or injury.

b. The agent, procedure, or regimen so used.

Notice the terms cure and mitigate.

If we go back to the dictionary, cure is

a. A drug or course of medical treatment used to restore health: discovered a new cure for ulcers.

b. Restoration of health; recovery from disease: the likelihood of cure.

c. Something that corrects or relieves a harmful or disturbing situation:

and mitigate is

a. To make less severe or intense; moderate or alleviate.

Thus, we should expect that any medical treatment should make us better than we would be without it.  Yet reporting on a systematic review in JAMA,  the New York TImes recently ran a piece called “If Patients Only Knew How Often Treatments Could Harm Them.”

Perhaps in these cases, we might want to reconsider using the term “treatment.”

The JAMA review, “Patients’ Expectations of the Benefits and Harms of Treatments, Screening, and Tests,” concludes

The majority of participants overestimated intervention benefit and underestimated harm. Clinicians should discuss accurate and balanced information about intervention benefits and harms with patients, providing the opportunity to develop realistic expectations and make informed decisions.

But where are patients getting this information?  While some may see advertisements for a handful of drugs, for the most part, patients get information on “treatment” from their doctors.  A commentary on the review suggests limiting advertising and changing product labeling to be more transparent (big thumbs up from me on the second one in particular).  It also says that

[A] physician must first understand the risk herself (or himself) and must then communicate it effectively.  It is not clear that physicians do either of these things well.

Addressing OB care, the JAMA article notes that only 9% of women accurately identified the benefits of a trial of labor after cesarean (TOLAC) over an elective repeat cesarean (ERCS), and only 37% accurately identified risks of a TOLAC. Patients also incorrectly identified the benefits of a fetal abnormality scan (90% overestimated the benefits), and 57% could not accurately identify the risks of amniocentesis.

One of the original articles from the review, Trial of Labor After Repeat Cesarean: Are Patients Making an Informed Decision, states

Women in both groups [TOLAC or ERCS] were insufficiently informed about the risks and benefits of TOLAC and ERCS, particularly women in the ERCS group. Specifically, our patients were not familiar with

• the chances of a successful TOLAC,
• the effect of indication for previous cesarean section on success,
• the risk of uterine rupture,
• the increased length of recovery with ERCS versus TOLAC
• the increased risk of maternal death, neonatal respiratory compromise, and neonatal intensive care unit admission with ERCS.

In addition, if our patient felt her provider had a preference, she was more likely to choose that mode of delivery, whereas when patients felt their providers were indifferent or if they were unaware of their providers’ preferences, 50% chose one mode and 50% chose the other.

 Note there is no indication that the women who did not feel the provider had a preference were making their own decisions based on accurate information.

Anecdotal evidence indicates that providers rarely provide accurate information–and sometime provide no information, simply saying, “Let’s schedule your cesarean.”  Some examples:

• Jessica: I was told I need not waste my time trying to attempt a vaginal birth because it would be another long birth that would ultimately end in another section.
• Jenerra: “I was always told by my doctors that because I had my first c-section that I would have to keep having them, even though my first c-section was the result of an induction gone wrong.”
• Kiara: I do believe that [my primary cesarean] was the best outcome for everyone, but I knew that I didn’t want that
  experience again. When I discussed this with my OB, she said ‘Oh, we don’t do VBACs in this practice. When you get pregnant again, we’ll just schedule you like a hair appointment. Easy!’
• Jamie: [My OB said], “You don’t want to VBAC. You don’t need to tear up your little bottom.”

The JAMA article, which is not focused on obstetric care in particular, does not address other common obstetric “treatments.” For instance, many physicians conduct ultrasounds routinely during pregnancy.  A friend of mine said her doctor never measured her fundal height, instead conducting an ultrasound at every appointment, even though there is no indication that having ANY ultrasounds improves pregnancy outcomes.   Other “treatments” for which women may not be adequately informed of benefits and risks include elective inductions,  Pitocin augmentation, and episiotomies, along with any number of other “treatments” offered in prenatal care, labor, and childbirth.

Women often believe they have no say in these procedures at all, as they are often presented as something that is going to occur rather than a choice that the woman can make.  Unfortunately, though ACOG offers excellent guidelines on informed consent, in practice informed consent is rarely more than a women signing a form that she has no time to read, and informed refusal is never on the table at all.  In fact some recent cases have indicated that in some cases doctors override a woman’s informed refusal, as in the case of Rinat Dray’s forced cesarean and Kelly X’s forced episiotomy.

The New York Times report on the JAMA review states:

This study, and others, indicate that patients would opt for less care if they had more information about what they may gain or risk with treatment. Shared decision-making in which there is an open patient-physician dialogue about benefits and harms, often augmented with use of treatment decision aids, like videos, would help patients get that information.

Unfortunately, shared decision making operates as a buzz phrase rather than a practice most of the time.  Perhaps this uninformed approach to “treatment” is why Marinah Valenzuela Farrell, a certified professional midwife, and president of the Midwives Alliance of North America notes in the New York Times series “Is Home Birth Ever a Safe Choice?” that hospitals carry their own risks.

They just don’t inform you about them.

Sexy Cancer, Obscene Eating, and the Social Breast

Sociological Images addressed two issues that have been pet peeves of mine for a long time, namely the sexualization of breast cancer and the sexualizing of breastfeeding.  The piece compares the admonishment of the author’s sister-in-law for allowing her “breast to fall out” when she fell asleep nursing on a plane and this 2012 ad for breast cancer awareness:

To create momentum to fund breast cancer research, breast cancer has been both feminized/infantilized through pink marketing, and sold as a way for men to save body parts to which they want to preserve sexual access.  Breast cancer awareness is all about the breasts.  Hence, you see bumper stickers that say

or

As if what is being preserved through breast cancer research and treatment are breasts, not human lives.  It is hard to imagine a campaign to raise awareness of testicular cancer that promoted blue teddy bears and selling beer with blue ribbons on it, along with bumper stickers saying “save the wienie beanies” or “save the family jewels” or “save the nuts” (which is what we are if we think such a campaign would ever occur).

While the 2012 ad featured in Sociological Images does include partial faces, many breast cancer awareness ads do not:

While it is possible for nubile young women to get breast cancer, most women who get breast cancer look more like this:

Bodies and breasts getting cancer treatment, even when headless, look more like this:

and despite the blonde locks on the tatas model, many women battling breast cancer do not have hair, having lost it to chemo treatments:

Somehow, these sexy tata images, including apparently naked women (or women’s torsos), are okay to display because they are for the higher purpose of fighting breast cancer, and perhaps more importantly, preserving breasts so men can be titillated by them (yes, titillated, haha).

While it may be possible to find breastfeeding a baby sexy, usually it is fairly dull.  Most women-infant pairs look something like this while breastfeeding:

though many new mothers don’t look this good on a regular basis.

But the media also tends to portray breastfeeding as an activity of a breast rather than a human:

even when the intent is not remotely sexual:

But many photos of breastfeeding women are sexualized.  Beautiful women with no postpartum paunches wear attractive bras or negligees or form-fitting tops and pull the top down (rather than wearing a loose shirt and lifting it up from the bottom):

  While some women do feed their babies this way, usually it’s not the first-line choice for feeding in the presence of strangers.

Somehow, this image gets translated to the typical breastfeeding women, who is chastised for allowing her breast to show, or sometimes merely because she is breastfeeding, even if no one can see anything at all other than fabric:

No one excoriates women for having cancer in public.

The problem with breasts is, apparently, that they are attached to women.  Women need to go out in public to work, shop, get sunshine, see other people, and all of the reasons that human beings generally leave the privacy of their homes.  And when they go out, they take their breasts with them.  And when a woman gets cancer, the pain and fear are experienced by a human being, not a breast.

It’s fine to think breasts are sexy.  it’s not so fine to define them as separate from the women who have them.

The Worth of a Woman: Antidepressant Use in Pregnancy

 

I read a comment once about depression as a “minor” side effect of taking oral contraceptives: depression is a minor side effect that merely ruins the entire quality of a woman’s life.  While pretty much everyone feels sad once in a while, depression is not the same as situational sadness.  Here is some basic information on depression from the National Alliance on Mental Illness (NAMI):

Major depression is a mood state that goes well beyond temporarily feeling sad or blue. It is a serious medical illness that affects one’s thoughts, feelings, behavior, mood and physical health….Without treatment, the frequency and severity of these symptoms tend to increase over time….[symptoms include] depressed mood (sadness), poor concentration, insomnia, fatigue, appetite disturbances, excessive guilt and thoughts of suicide. Left untreated, depression can lead to serious impairment in daily functioning and even suicide, which is the 10th leading cause of death in the U.S.

Fortunately depression is treatable, and one main component of treatment is often taking selective serotonin reuptake inhibitors (SSRIs), which include commonly prescribed antidepressants such as Zoloft and Prozac.  Treatment for depression not only impacts quality of life, but life itself.

Imagine my surprise, then, to read New York Times writer Roni Caryn Rabin‘s comparison of giving up prescribed antidepressants to giving up smoking.  And imagine how much more surprising it was when she compared giving up antidepressants to giving up brie.  Yes, brie, as in a single type of gourmet cheese.

I’m sure that anyone who has ever confessed to loving brie more than life was being hyperbolic.

The piece goes on to quote Barbara Mintzes, an associate professor at the University of British Columbia School of Population and Public Health:

If antidepressants made such a big difference, and women on them were eating better, sleeping better and taking better care of themselves, then one would expect to see better birth outcomes among the women who took medication than among similar women who did not.  What’s striking is that there’s no research evidence showing that, [but on the contrary] when you look for it, all you find are harms.

Who is harmed by the continued use of antidepressants, you might ask?  After all, if they were harming the woman, wouldn’t she have stopped taking them on her own?  Wouldn’t it be likely that she would have stopped taking them before she became pregnant?

Well, it turns out that the “harms” of taking antidepressants accrue only to the fetus–maybe.

Among the possible harm that the article lists are autism, attention deficit hyperactivity disorder (ADHD), lower language competence at age 3, preterm birth, birth defects, a lung disorder, REM sleep disruption, and lower birthweight and Apgar scores.

The problem is, most studies were of low scientific quality.  In some of the studies, when further controls were used, many of the negative outcomes were associated with having a mother with depression, whether or not she took antidepressants.

The article does not distinguish between different SSRIs–although these drugs all impact seratonin, they have different chemical formations.  The only concession to this that the article makes is to note that Paxil in particular is associated with birth defects, but information about Paxil strongly recommends against using it in pregnancy, and the FDA changed Paxil’s labeling and pregnancy category in 2005.

Many women actually do give up antidepressants in pregnancy.  For instance, one study of over 100,000 women in the UK found that “Only 10% of women treated before pregnancy still received antidepressants at the start of the third trimester. In contrast, 35% of nonpregnant women were still treated after a similar time period.”  The study does not indicate whether women who continued using antidepressants had different outcomes.

Rabin’s piece does quote Dr. Roy Perlis, an associate professor of psychiatry at Harvard Medical School and author of a study that found a connection between fetal antidepressant exposure and ADHD. Depite this research, he says,

The downside of these studies is that it ends up scaring women away from treatment…the severity of the depression or anxiety can make it very hard for [women] to take care of a child, and is such that their life is at risk if they’re not treated.

The article then closes with an implication that Dr. Adam Urato, a maternal-fetal medicine specialist at Tufts Medical Center, thinks women should stop using antidepressants in pregnancy in favor of non-drug options such as counseling, exercise, and bright light therapy.  I am in favor of all of these things as first line treatments, but if they are not sufficient, what should a pregnant woman do?

The response from pregnant women and young mothers who read this piece doesn’t indicate that Rabin’s information was helpful.  Isn’t it bad enough to be depressed without being shamed for seeking treatment?

Alexis, the mother of a 7-week-old, says

Well I guess I’m a horrible person and mother…Now I feel guilty about the drug that I was prescribed following a suicide attempt 2 years ago, a drug that literally saved my life.

Rachel, currently pregnant, writes

OMG, I am totally freaking out! I have been taking Prozac for symptoms of anxiety for the last few years. When I became pregnant, my ob/gyn, my current therapist, a past therapist whom I consulted, and my prescribing doctor all assured me, in no uncertain terms, that it would be better for my baby if I stuck to this regimen than if I were to discontinue it. Now I am about to start my second trimester, and I read here, also in no uncertain terms, that all my doctors were wrong! Now what am I supposed to do?! Help!!!

On a brighter note, unlike many articles that generate sympathy primarily for the fetus at the expense of the woman, many commenters here point out the deficits in Rabin’s presentation and her argument.  A number of them  are physicians or nurses, and many are also outraged at the comparison of antidepressant use to smoking and eating cheese.

Here’s Nicole:

As an obstetrician I am mortified that this article starts off by comparing quitting smoking and not drinking alcohol to weaning off SSRIs, and it blames the mother for staying on them while barely mentioning that it can’t happen without providers like me who do the prescribing.

And Alabama Doc:

First, medication for a serious brain disorder is nothing whatsoever analogous to buying cheese…There is muddling of several separate issues here, with the assumption that the women and their doctors are using an ineffective medication just for… what, a lifestyle preference? Yes, we have evidence that non-medication treatment can be highly effective for mild to moderate depression and that there may be no clear benefit of SSRIs for mild depression. For severe depression, however, medication appears to have significant benefit. Notice how all the discussion of risks/ benefits centered around the infant and really nothing was said about the mother? Is the mother’s life so unimportant?

and Caroline Cylkowski, Nurse Practitioner:

Shame on NYtimes for publishing an article completely based on pseudoscience. The author cites the opinions of one MFM doctor and one public health researcher as the basis for her argument. What is scary is that pregnant mothers, who already worry that everything they do might harm their future child, will read this this and discontinue their antidepressants. Antidepressants are not optional medications. The disease they treat has debilitating and sometimes life-threatening consequences.

In contrast to Rabin’s piece, sources from medical institutions take a very different tone.  For instance, Massachusetts General Hospital points out

Many women may consider stopping medication abruptly after learning they are pregnant, but for many women this may carry substantial risks.  Decisions regarding the initiation or maintenance of treatment during pregnancy must reflect an understanding of the risks associated with fetal exposure to a particular medication but must also take into consideration the risks associated with untreated psychiatric illness in the mother. Psychiatric illness in the mother is not a benign event and may cause significant morbidity for both the mother and her child; thus, discontinuing or withholding medication during pregnancy is not always the safest option.

The MGH site goes on to point out that each medication is different and some carry more risks than others.  They identify several antidepressants that appear to have no association with birth defects and point out that symptoms of neonatal withdrawal from antidepressants are generally mild and disappear within a few days.

What is perhaps most disheartening about Rabin’s piece is the addition of women’s legitimate medical treatment to the Pregnancy Outcome Blame Game.  Major causes of birth defects include environmental contamination and domestic abuse.  Major causes of preterm birth are racism and lack of prenatal care.  But these require broader social intervention to mitigate.  How much easier to blame individual women for poor birth outcomes, especially when they are too depressed to defend themselves.

Fertilized Eggs, Women, and the Elephant Fetus

Is this a bowl of eggs or a a bowl of chickens?

The eggs are fertilized, so by the logic of those who believe a fertilized human egg is the equivalent of a human being, this is indeed a bowl of chickens.

And this is a fried chicken:

 

The claim that fertilized eggs are human beings reminds me of the joke (often attributed to Abraham Lincoln),

Q: If you call a tail a leg, how many legs does a dog have?

A: Four, because calling a tail a leg doesn’t mean it is one.

One of the main arguments in Hobby Lobby’s case against providing comprehensive contraception is that  morning after pills and IUDs are abortifacients.  Many have pointed out that morning after pills (which are NOT the same as the pills that actual do induce abortion) work by preventing ovulation, and IUDs generally work by thickening cervical mucus and otherwise creating an inhospitable environment for fertilization to occur.  Olga Khazan offers a concise explanation of the whole thing at The Atlantic.

The only method that could possibly meet any definition remotely connected to abortion is the Paraguard IUD, which when inserted up to 5 days after intercourse, appears to prevent pregnancy in ways that no one has entirely determined.  It is remotely possible that one of these ways could be to prevent the implantation of a fertilized egg.

This hypothetical fertilized egg has not developed into an embryo, much less a fetus, even less a baby (or child, adolescent, adult or senior citizen).  You can see slide show showing the process of ovulation to implantation here.  The passion with which some defend the life of a fertilized egg is mirrored only by the passion with which some defend an elephant fetus as a human being (seriously, click the link–the anti abortion crowd passionately defended the humanity of the elephant fetus).  Just in case you are curious, here is a photo of a fertilized human egg:

And here is a photo of an elephant fetus:

By the logic of the “personhood” movement, the top image is a person and the bottom image is an elephant.

There are many problems with assigning human status to fertilized human eggs (or elephant fetuses).  But the greatest problem comes when a woman becomes not a human being in her own right, but the vessel for the development of potential humans.

Thus, the argument that Hobby Lobby and others with their beliefs make is that it is immoral for a woman to make her body inhospitable to the implantation of a fertilized egg.  We already know that the methods of contraception that they claim prevent implantation actually prevent fertilization in the first place.  But let’s go ahead and pretend that implantation of a fertilized egg might be prevented.

Why is this a problem?  About half of fertilized eggs do not implant even when a woman is not using any form of contraception at all.  By the logic of the anti-IUD crowd, women should be banned from doing ANYTHING that might interfere with implantation of fertilized eggs.  This might include things such as being underweight.  If a fetilized egg is more likely to implant in heavier women, shouldn;t we force all women to be the ideal weight for implantation?  In fact, if a fertilized egg is a person, and that “person” has the indisputable right to grow inside of another person until it decides it can survive on its own, perhaps we should force all fertile women to take drugs that make implantation more likely.

If women use contraceptives, including IUDs, they are actually less likely to expel fertilized eggs because the eggs are less likely to become fertilized in the first place.  Libby Anne at Love, Joy, Feminism has a great explanation of how using birth control is the best way to prevent the deaths of fertilized eggs/zygotes/blastocysts.  And as I have argued, if we really believed fertilized eggs to be human, we would insist on funeral services and other respectful disposal of them instead of allowing them to pass along with ordinary vaginal discharge (the fertilized egg would be expelled before menstruation; implantation occurs about 5 days after ovulation, but menstruation occurs about two weeks after).

Believing that a fertilized egg is a person does not make it so.  Believing that morning after pills and IUDs cause abortions does not make it so.  And believing that a woman is an obligatory vessel not deserving of human rights does not make it so either.

 

State Regulation of Women’s Bodies: Abortion and Breastfeeding

Dr. Patrick Johnson is the director of Personhood Ohio, “an organization committed [to] the restoring the personhood rights of unborn children through an amendment to the Ohio constitution.”

In case you are wondering if a woman is a person in Johnson’s intolerant mind, here is the Personhood Ohio argument against abortion:

The Ohio constitution states the following:

Article 1, Section 1: All men are, by nature, free and independent, and have certain inalienable rights, among which are those of enjoying and defending life and liberty, acquiring, possessing, and protecting property, and seeking and obtaining happiness and safety.

Article 1, Section 16: All courts shall be open, and every person, for an injury done him in his land, goods, person, or reputation, shall have remedy by due course of law, and shall have justice administered without denial or delay.

Thus (according to Personhood Ohio):

The Ohio Personhood Amendment will insert Section 16(b):

“Person” and “men” defined:

(A) The words “person” in Article 1, Section 16, and “men” in Article 1, Section 1, apply to every human being at every stage of the biological development of that human being or human organism, including fertilization.

Apparently if one gives constitutional rights to defend life and liberty and obtain happiness and safety to fertilized eggs but not women, then we have personhood.  Because everyone knows that women are not people.

In any case, Johnson has a new obsession, and that is preventing children and married men from seeing women’s breasts.  here is another area in which a woman’s breast becomes separate from the human breast.  All people have nipples and breast tissue.

There are innumerable arguments about the sexualization of women’s breasts being a social construction.  Here are a few points:

In many indigenous societies, women go topless as a matter of course, and the exposure of breasts is incidental to existing.  Here is a woman farming in Cameroon:

In the Victorian era, when women’s sexuality was repressed and showing an ankle was scandalous, breastfeeding was a sign of mothering, which was not considered sexual.  Thus, the ankle, not the breast, was sexualized:

Throughout history, Mary, who was so desexualized that many worship her as a virgin, has been depicted breastfeeding with exposed breasts:

And going topless on the beach is typical for women of all ages and sizes in much of Europe (not just for the stereotypically sexy).

Yet we have worked Americans into such a tizzy about human women’s breasts that I once had a class of fifth graders completely freak out when exposed to this image:

This is just black lines.  The person represented doesn’t even have a face.  Yet the very idea of a breast is somehow outrageous.  It is somewhat like thinking one must dress a zucchini in a burquah.  Or like the Shel Silverstein poem about putting a bra on camel humps.

Men have breasts, and while people might not like to see them when they are large, they can be exposed with no one challenging the legality of exposure:

Yet a flat chested women’s breast are somehow obscene:

Women’s and men’s breasts are not particularly different.  It is actually possible for men to breastfeed.  Seriously.  There’s even a very short, highly amusing movie about it, “Milk Men,” which you can watch here.

But preventing women from exposing their breasts, particularly when exposure is incidental to breastfeeding, is a way to have men define women’s sexuality and thus demand to control women’s bodies.  When people tell women to cover up, sit in toilet stalls, or stay home because they are feeding babies, they are telling women that they cannot be female in public.  They are privileging certain people’s perceptions of a woman’s body over the actual woman in that body.

People have nipples.  Everyone is born with them.  It is not an exciting concept:

Can you even be certain which of these belong to women and which to men?

Then whose body will you know to control?

CPR for Pregnant Women: Treating the Vessel

Let’s say you are CPR certified and the woman next to you on the morning commuter train goes into cardiac arrest.  Is your first thought, I had better let this woman die because if I perform CPR, I might hurt her fetus?  Apparently this is the attitude of many health care providers.

The Society for Obstetric Anesthesia and Perinatology (SOAP) has issued a new consensus statement regarding cardiopulmonary resuscitation (CPR) for pregnant women.  Pregnant women may have special needs regarding CPR, especially later in pregnancy when the size of the fetus compresses veins sending blood back to the heart.

Sometimes a hysterotomy (basically a cesarean, but the idea is to get the fetus out of the woman’s body) is the best way to preserve the woman’s life.  Some might be concerned about hysterotomy because of the concern for the life of the fetus being born prematurely.  We might then ask, what happens to a fetus inside of a woman who has gone into cardiac arrest and dies?  Well, the fetus generally dies too.

One of the things the new guidelines state is the importance of administering care that prioritizes saving the pregnant woman’s life.  Generally when a person goes into cardiac arrest, saving that person’s life is the goal, and it is alarming that it has to be stated that the life of a pregnant woman is equally valuable to the life of any other person who goes into cardiac arrest.

In a Q & A with Brendan Carvalho, Chief of Obstetric Anesthesia at Stanford University Medical Center, Dr. Carvalho notes that pregnancy CPR guidelines are important because pregnancy can increase a woman’s risk for cardiac arrest (and all women, pregnant or not, are at some level of risk).  It is laudable to recognize the normalcy of pregnancy in a woman’s life and determine how to provide appropriate medical treatment.  While Carvalho notes that U.S. maternal mortality has decreased dramatically over the last century, he does not mention that it has increased dramatically over the last two decades, with a rate that is now among the worst in the developed world.  The U.S. rates 60th nationally–59 countries have lower maternal death rates.

Perhaps part of rising maternal mortality stems from an attitude toward pregnant women that their humanity is suspended while they perform as vessels for fetal growth.  Such an attitude has been evidenced in the case of  Marlise Munoz (see here), the Texas woman whose dead body was kept artificially functioning against her wishes and those of her family so that it could serve as an incubator for her fetus. Louisiana has created an official law (which is expected to be signed by the governor) that mandates women’s dead bodies be artificially sustained as incubators for any fetus inside them that has reached 20 weeks.   Pregnant women are routinely criminalized for behavior that is not prosecuted in other adults, such as alcohol consumption or refusing to follow the recommendations of a physician (see here), indicating that pregnant women cannot be accorded basic human rights–the kind of rights accorded to all other adult humans.

Carvalho says,

Caregivers are often reluctant to administer medication to pregnant women because of potential harm to the baby. The consensus statement emphasized that caregivers can use the same drugs they typically give to a nonpregnant patient who has a cardiac arrest. The best thing you can do for baby is to provide the mom the best possible care and not withhold any drugs or procedures that would normally be used managing a critically ill person.

The key word here is person.  What justification would there ever be to intentionally withhold treatment from a critically ill person whose life could be preserved?  If pregnant women were truly viewed as people, no one–not Carvalho, not anyone–would ever have to make this statement.

Lies, Damned Lies, and Cesareans

There has been renewed interest in cesareans in the news (and on this blog) since the release of the ACOG/SMFM consensus statement on preventing primary cesareans in March.  When all health care providers are following best practices, rates of procedures should be relatively similar in patients with similar risk profiles.  This is not so for cesareans, where rates of the procedure in low risk births (singleton, cephalic fetus at term; woman with no health complications) can range from less than 5% to nearly 60% depending on the hospital.

Recently the Contra Costa Times ran a story about the issue in which they quoted Dr. Kirsten Salmeen (whose research interests indicate that she is interested in shared decision making models).  Here is the section of the story in which she comments on practice variation:

Why such profound variations? Should our standards of medical practice be so flexible?

The answer is “complicated” replies Dr. Kirsten Salmeen of the Maternal Fetal Medicine Division at UC San Francisco. She thinks variations in cesarean rates across the country are “likely due to a combination of factors.” That includes differences in patient populations and preferences, provider availability and coverage, hospital and provider culture, access to anesthesia and surgical obstetric services, and the prevailing medico-legal climate.

For example, Salmeen proposed that a difference in rate might depend upon the scope of available obstetrical services. In a hospital staffed with 24/7 obstetric coverage and resourced to provide a C-section when needed, a woman might be allowed more time for labor with a vaginal delivery. In contrast, that may not be as feasible with a solo or small-group provider who’d have to cancel scheduled clinic appointments with many patients in order to wait upon one patient’s labor.

While resource allocation can affect cesareans, in many countries, scant resources mean that women cannot get cesareans that they do need, which is one reason infant and maternal mortality rates are so high in developing nations where hospitals are not universally accessible by birthing women.  It seems preposterous that a lack of resources would lead to more cesareans–it’s how those resources are allocated.

The more important question in terms of shared decision making and informed consent is what women are told when a doctor performs a cesarean.  Are they given the real reasons as outlined by Dr. Salmeen:

• Does an obstetrician in solo practice say, “Your labor is normal and you and the baby are doing fine but it looks like your birth is going to take several more hours, and I have patients waiting at the office, so is it okay if I just do a cesarean?”
• Or perhaps in a state with high malpractice claims, the obstetrician says, “Your labor is normal and you and the baby are doing fine, but you had a brief indeterminate fetal heart rate tracing, and if your baby isn’t perfect, you could use that to sue me, so is it okay if I just do a cesarean?”
• Or perhaps the obstetrician says, “Our culture here at this hospital is to do cesareans on women who don’t really need them, so let’s schedule yours now.”

Somehow, I think not.  Here is a video, intended to be humorous, in which the “OB” convinces a woman to have a cesarean, which “will be way easier” for him:

 

Unfortunately, the kinds of things the actor says are often not that far from things some obstetricians say in real life.

As Dr. Elliott Main (a generally great guy) points out, a doctor can convince pretty much any woman to have a cesarean.  Few women will refuse when a doctor tells them their baby is in danger.

That’s a much easier sell than needing to get back to the office.

 

VBAC vs. Forced Cesarean: Facts, Opinion, and Informed Consent

Rinat Dray was forced to have a cesarean in 2011 at Staten Island University Hospital.  Dray had two previous cesareans and chose a doctor who said he supported her desire for a VBAC and a hospital with (by American standards) a low cesarean rate and a good VBAC rate.  But once she arrived at the hospital in labor, according to Dray (as reported by the New York Times),

The doctor told her the baby would be in peril and her uterus would rupture if she did not [have a cesarean]; he told her that she would be committing the equivalent of child abuse and that her baby would be taken away from her.

She still refused the cesarean, and she was supported in her refusal by her husband and her mother.  The hospital strapped her down and wheeled her into surgery as she begged them to stop.  A note in her medical record by Dr. James Ducey says, “I have decided to override her refusal to have a C-section.”  During the surgery, the doctor punctured her bladder.  You can hear a podcast on RH Reality Check in which Dray discusses her case along with professionals in obstetrics, law, and ethics.

Dray is a Hasidic Jew, which likely means that she wants a large family.  While there are risks to vaginal birth after cesarean, in most cases there are even greater risks to having many cesareans.

In the podcast, Dr. Katharine Morrison, MD, FACOG (Director of Buffalo WomenServices, which I wrote about here) says that she reviewed the record and it did not appear that there was an emergency situation or that a cesarean was needed at all.  But even if a cesarean has appeared necessary to preserve the life or health of Dray or her baby, as Dr. Howard Minkoff, chairman of obstetrics at Maimonides Medical Center in Brooklyn, said in the NYT article, “I don’t have a right to put a knife in your belly ever.”

One would think that a case in which a psychologically stable woman refused surgery and was then strapped down, sliced open, and had her bladder perforated would be apparent to anyone as a horrendous breach of human rights.  (And actually, she was asking them to wait a little longer, not saying she would not agree if she felt a cesarean was truly necessary).

All one has to do to see where a woman falls in the human rights spectrum of many is to read the comments on the New York Times piece.

The comments fall into a number of categories, including some that unequivocally support Dray.

Many, however, unequivocally support the the doctors or the profession of obstetrics.  Here is Northstar5:

If this woman had 2 prior C-sections then the doctors are absolutely right that vaginal delivery was exceedingly risky. I almost laughed when I read that the woman is charging the doctors and hospital for “improperly substituting their judgment for that of the mother.” What?? That’s what they are supposed to do. They are doctors, she is not.

Some defend the doctors doing whatever they like to avoid risks of malpractice:

Attempting a vaginal birth after two c-sections is extremely dangerous and reckless. The physicians involved would likely have been sued regardless of the method of delivery, so I applaud them for at least saving a life in this case.

I’m not sure where the commenters get their medical information, but the doctor agreed in advance to attend Dray at a vaginal birth.  You can read the entire American College of Obstetricans and Gynecologists’ practice statement “Vaginal Birth After Previous Cesarean Delivery,” which specifically says, “women with two previous low transverse cesarean deliveries may be candidates for TOLAC [trial of labor after cesarean].”  I highly recommend that you visit Jennifer Kamel’s website VBACFacts.com and read “13 Myths about VBAC.”  Repeat cesarean and VBAC both have risks.  The newest ACOG obstetric care consensus statement on cesarean points out the risks of cesarean over vaginal birth.  Cesarean nearly quadruples the risk of maternal death, and risks of maternal morbidity and mortality go up with every cesarean.  This would be a particular concern for a woman who wanted a very large family, as many Hasidic women do.  Here is a consent form that clearly lays out the risks and benefits of repeat cesarean and VBAC.

Some commenters are completely on the side of the fetus–if the mother’s status is reduced to that of a container, so be it.  Here’s NYC Commuter:

In this case, the hospital and doctors have not one patient, but two. One is an adult who appears competent to make medical decisions. The other is a fetus, at term, who has no voice. The courts have repeatedly affirmed that the state has a duty to protect citizens that cannot protect themselves. If a fetus is believed to be “alive,” then an argument can be made that it must be protected as well. Pregnant women have been forced to receive imprisoned to prevent them from harming their fetuses (e.g. drug abusers), take medication (e.g. for treatable diseases), and even receive c-sections if the baby’s life is judged to be in direct jeopardy.

I have written about the ethics of privileging the well-being of a fetus over an adult woman many times, including here, here, and here.  ACOG also agrees that a woman should have the right to make her own decisions, even if it may negatively impact the fetus.  One recommendation from ACOG’s Committee Opinion, “Maternal Decision Making, Ethics, and the Law” says,

Pregnant women’s autonomous decisions should be respected. Concerns about the impact of maternal decisions on fetal well-being should be discussed in the context of medical evidence and understood within the context of each woman’s broad social network, cultural beliefs, and values. In the absence of extraordinary circumstances, circumstances that, in fact, the Committee on Ethics cannot currently imagine, judicial authority should not be used to implement treatment regimens aimed at protecting the fetus, for such actions violate the pregnant woman’s autonomy.

In addition to wanting to protect the rights of physicians and fetuses over those of pregnant women, many commenters simply condemn Dray as selfish, selfish, selfish.  Here’s Beth Green:

What an incredibly selfish woman putting her unborn child in harms way. She got her several hours of trial-labor and no baby, so according to the standard of care she got a C-section and a healthy baby.

Some also posit that Dray is not only selfish but also psychologically compromised.  Here’s Dave:

This case is not about the “debate over C-sections.” This case is mostly about psychopathology, but there is a larger point. Rinat Dray’s actions harm us all. In her narcissism, she was willing to sacrifice her child to maintain her sense of control. This bears repeating – we are dealing with someone who would rather her child suffer than allow a section. So I’m sure she cannot put herself in the place of others, and she will not understand this, but she makes it all the more difficult to deliver babies in the US. Once all the OB/GYNs suffer these indignities and these lawsuits from those with personality disorders, who will deliver babies safely?

And here’s Reader:

A mother in labor who focuses more on her joy of delivery rather than trying to ensure that she delivers a healthy child who could be stuck with birth defects for up to an average of 7-8 decades thereafter is not rational, is selfish and needs to have her head examined.

What we get above all else if the “all that matters is a healthy baby” trope.  Here is NMY:

I have absolutely no sympathy for this woman at all. Her sense of entitlement is simply galling. She’s having a baby. The most important thing here is to ensure the delivery of a healthy baby, not to satisfy some preconceived notion that she should have a vaginal delivery.

Here’s Jen:

The OBGYNs can’t win. Now they are going to get sued for performing c-sections. It used to be they got sued for not doing the section soon enough. This lawsuit is absolutely ridiculous and I hope the physicians win. Do you want a c-section and a healthy baby or a VBAC and a dead baby? How can any mother refuse a c-section when the physician is telling you the health of your baby is at risk?

Here’s Stephen:

Sorry, but the health of the fetus should trump the intellectual desires of the mother….There are too many C-sections performed to be sure, but isn’t the point of labor and birth to deliver a healthy baby?

Here’s Lynn in DC:

She had this child in 2011 and all of her children are healthy so what’s the big harm here?

Aside from the fallacy of believing that Ms. Dray could not have both a respectful vaginal birth AND a healthy baby, a healthy baby is not all that matters.  A healthy mother matters too.  As in Ms. Dray’s case, having a perforated bladder and the trauma of being strapped down for a surgery that she actively refused did not result in a healthy mother.  Not being dead is not good enough.

 

 

 

Cesarean Rates: The Fallacy of Process vs. Outcome

The New York Times recently ran an excellent piece on increasing evidence-based medicine in childbirth, Tina Rosenberg’s “In Delivery Rooms, Reducing Births of Convenience.”  One would think that evidence-based practice was not a controversial idea.  But apparently it is–especially in childbirth.

The piece discusses the reasons for hospitals’ varied cesarean rates among low-risk births (healthy women with no prior cesarean and a full term, singleton, vertex fetus).

 For instance, Los Angeles Community Hospital has a 62.7% rate; up the coast at San Francisco General, the rate is 10.1%.  Remember, these are all low-risk births.

The piece concludes that there are many reasons for the variation, including some not very nice ones, like the convenience of doctors or the fact that most of the fee doctors collect for prenatal care and birth comes from attending the birth (making it worth their while to schedule births for when their partners won’t get the prize). It also discusses various staffing models that may contribute to the rise or fall of cesarean rates.

Then come the comments.

Apparently, some believe that merely presenting evidence about safe and healthy childbirth practices deprives women of choices.  Here’s “Janet”:

My body – my choice. Period.
If in the current medical environment I can elect cosmetic surgery, then I can elect a C-section. No further discussion necessary.
Stop subjugating women by dictating how to deliver.

There are authoritative statements based on supposition or speculation.  “PPippins” had a lot to say in the comments, including this:

Natural birth is not complication free: it harms mothers and babies. Where is the outrage about the babies who die or are damaged during natural births? What of the mothers who suffer unspeakable trauma and damages, require subsequent surgeries, become incontinent? No one ever has anything to say about them.

Of course, all of these things can happen during cesareans, medicated childbirth, operative vaginal deliveries–any birth has risks.  Evidence, however, shows that vaginal birth is safest for women (cesarean more than triples the risk of maternal death), and that two years after birth, there is no statistical difference in incontinence between women who birthed vaginally vs. by cesarean.

There are attacks on people who support natural childbirth.  “Kirsten” is sure there is a conspiracy:

Whoever selected the comments with the green checkmarks was clearly a natural childbirth advocate like the author of the article. It is sort of a religion that they try to indoctrinate you into in many birth education classes. I’m appalled that the NYT is promoting such a poorly supported opinion. A low cesaren rate has nothing to do with the maternal and fetal mortality rates and that is why it is wrong to do what the author did and rate hospitals according to their cesarean rates. Also, the author claimed that the acog supports a 15 percent cesarean rate while linking to a natural childbirth propaganda site. Bait and switch. There is no such acog recommendation.

Actually, ACOG did set a target of a 15% cesarean rate among low risk mothers as part of the Healthy People 2010 goals (the goal was not met).  Cesarean is most certainly tied to maternal mortality and morbidity (and has some elevated risks for infants as well).  While there are definitely those who advocate for natural/physiologic birth, I have never heard any natural childbirth advocate say that women should be forced to have an unmedicated vaginal birth.

Then, there are the anecdotes.  My heart goes out to any woman who loses a child–having a stillborn or infant death is a terrible and traumatic thing.  Certainly there are isolated cases in the U.S. in which a cesarean should have been performed and was not.  This does not mean that all women should have cesareans, just as the fact that some women die as a result of cesarean does not mean that no woman should ever have one.  It’s hard to present facts this way to a woman suffering from such a terrible loss, so we’ll just say it here, and if you want to read the anecdotes, go read the comments on the article.  I’m not going to exploit anyone’s pain.

Finally, there are the arguments that the process of birth doesn’t matter–only the outcome.  And the outcomes we care about set the bar at being alive, and possibly healthy:

The only thing that would tell us about safety is mortality rates (both perinatal and maternal, adjusted for the risk profile of the patient population).
Ms. Rosenberg has sadly fallen into the mind set of the natural childbirth community, which values process (vaginal birth) over outcome (live mother and live baby).
Would you judge a cancer center by how much chemotherapy is “necessary” or “unnecessary” or would you judge it by how many cancer patients survived? Would you judge the treatment of heart disease by how many people got angioplasty vs. how many had surgery, or would you judge it by how many people survived and thrived after hospitalization.
The goal in obstetrics is NOT to maximize vaginal deliveries. The goal is to maximize babies’ lives and brain function and mothers lives.

Of course, as noted in the links above, overuse of cesarean surgery does not contribute to the goal of life, especially for mothers.  Let me respond twofold:

1. If a hospital has equal or better survival rates by doing fewer heart surgeries or less chemotherapy, I think that’s a great way to assess the quality of care.
2. By the logic of this comment, as long as you are alive (and maybe physically healthy and not brain damaged), nothing that happens to you can possibly matter.  Were you sexually harassed?  Did you lose your job?  Did your house burn down?  Well, you are alive and healthy, and that’s the only way we can assess your life.  By this logic, no one should ever have a wedding ceremony and reception because you are just as married if you make a quick (and very low cost) trip to the courthouse.  Why does it matter how you got to your married state if you are ultimately married?  Plus, you would be alive whether you had a nice wedding or not, so who cares?

If the commenter doesn’t care about her life experiences, that’s fine.  She can have superfluous cesareans and no wedding and be thrilled with her live state after she loses her job and her house burns down.

But for some of us, the quality of our life experiences does matter.

Plus, at San Francisco General, with its high risk, low income population and 10% term, singleton, vertex cesarean rate, there have been no maternal deaths in the last 5 years, and perinatal mortality is less than half of the national average.

Which just goes to show, having good experiences and being alive are not mutually exclusive.

 

Birth in Brazil–and America

The cesarean rate is Brazil has been high for a long time, and it is getting higher.  In private hospitals, almost all women deliver by cesarean; in public hospitals it’s about half.  According to Ricki Lake, who went to Brazil in the process of filming The Business of Being Born, “There was actually a joke circulating that the only way to have a natural birth in Rio was if your doctor got stuck in traffic.”  Brazil’s childbirth practices have come to attention recently because of Adelir Carmen Lemos de Góes, who on April 1, 2014, was taken by police to have a forced cesarean under court order.  Here’s an account of what happened from The Guardian:

…Brazilian mother Adelir Carmen Lemos de Góes was preparing for her third birth. Despite living in a country with one of the highest caesarean rates in the world (82% for those with private insurance and 50% for those without), she was looking forward to giving birth vaginally after previously having caesareans she felt were unnecessary.  However, in the midst of her labour, six armed police banged on her front door. Despite there being no question of reduced mental capacity, doctors had obtained a court order allowing them to perform a caesarean…Adelir was taken from her home, forcibly anaesthetised and operated on without consent.

Attorney Jill Filopovic writes,

A Brazilian court granted a prosecutor’s request for the appointment of a special guardian. And just in case it was unclear whose life gets prioritized when a woman has a c-section against her will, the judge specified that when there is a ‘conflict of interests of the mother with the child’s life … the interests of the child predominate over hers.’

Filopovic quotes Dr. Simone Diniz, associate professor in the department of maternal and child health at the University of São Paulo: 

In our culture, childbirth is something that is primitive, ugly, nasty, inconvenient….It’s part of Catholic culture that this experience of childbirth should come with humiliation.

The Atlantic subsequently ran a longer piece by Olga Khazan, “Why Most Brazilian Women Get C-Sections,” which, also points to a confluence of attitudes, practices, policies, and norms that lead to a trend toward universal cesarean.  Humiliation isn’t hard to come by in Brazilian obstetrics.  Khazan reports,

Many physicians’ attitudes toward childbirth weave together Brazil’s macho culture with traditional sexual mores….When women are in labor, some doctors say, ‘When you were doing it, you didn’t complain, but now that you’re here, you cry.’

Mariana Bahia, who participated in protests against forced cesarean, noted:

There’s no horizontality between patients and doctors.  Doctors are always above us.

And Paula Viana, head of a women’s rights organization, said,

We have a really serious problem in Brazil that the doctors over-cite evidence [of fetal distress].  They think they can interfere as they would like.

But much of what these various articles says about childbirth in Brazil is eerily similar to what happens in the United States.  Khazan quotes Maria do Carmo Leal, a researcher at the National Public Health School at the Oswaldo Cruz Foundation about birth practices in Brazil:

Here, when a woman is going to give birth, even natural birth, the first thing many hospitals do is tie her to the bed by putting an IV in her arm, so she can’t walk, can’t take a bath, can’t hug her husband. The use of drugs to accelerate contractions is very common, as are episiotomies.  What you get is a lot of pain, and a horror of childbirth. This makes a cesarean a dream for many women.

In the United States, Pitocin induction and augmentation are ubiquitous , and episiotomies, though less common than in Brazil, are still greatly overused.  Almost all U.S. hospitals use IV hydration as a matter of policy (rather than allowing women to eat and drink as they please, which is the evidence based recommendation).  And in the U.S., taking a bath in labor may be impossible, as many hospitals do not provide bathtubs out of a misguided fear of women attempting waterbirths. The website My OB Said What documents a seemingly endless stream of U.S. health professionals’ humiliating comments, such as referring to a pregnant women as a “little girls,” criticizing their weight, or belittling their pain.

Court ordered cesareans occur in the United States as well, as Erin Davenport documents in “Court Ordered Cesarean Sections: Why Courts Should Not Be Allowed to Use a Balancing Test.”  Davenport notes that forced cesareans are generally ordered because of concerns for fetal welfare–as in Brazil, U.S. courts often privilege the rights of the fetus over those of the pregnant woman.

Alissa Scheller created infographics on Huffington Post showing how states’ policies are used to persecute and prosecute pregnant in the name of fetal welfare.

National Advocates for Pregnant Women, whose research supplied much of the information for the above graphic, documents the legal control of pregnant women that occurs in the name of fetal rights, such as prosecuting a woman for murder after a suicide attempt while pregnant (in this case, the baby–born by cesarean–was alive, but died a few days later).

While the cesarean rate in the United States is much lower than in Brazil, a third of U.S. births are by cesarean, more than double the “threshold not to be exceeded” identified by the World Health Organization.  Khazan notes the parallels between Brazil’s medical system and the the system in the U.S.–both incentivize cesareans:

With the higher price of the private system [in Brazil] comes better amenities and shorter wait times, but also all of the trappings of fee-for-service medical care. C-sections can be easily scheduled and quickly executed, so doctors schedule and bill as many as eight procedures a day rather than wait around for one or two natural births to wrap up.

As in Brazil, though some cesareans performed in the U.S. are certainly in the interest of maternal and/or fetal well-being, many are in the interest of the obstetrician’s well-being.  There is still a convenience factor; in addition, OB-GYN Dr. Peter Doelger said doctors and hospitals are protecting themselves by following protocols based a fear of litigation:

So you’re stuck with this situation where we’re doing things, not based on science.  [The increase in C-sections is] really based on protecting the institution and ourselves. And, you can’t blame them. Getting sued is a horrible thing for the physician, a horrible thing for the nurse, and a horrible thing for the institution.

And the woman?  Well as long as the baby is healthy, does she matter?