What is Informed Consent?

Every woman who gives birth comes to a point of having to make decisions about that birth. It might be a seemingly simple decision: is it time to call the midwife, is it time to go to the hospital; or a very complex, difficult decisions: should we agree to an episiotomy, should we agree to a c-section. All of these decisions require information, and one of the ways patients in a hospital receive information is through informed consent.

The definition of informed consent is pretty straightforward. It has three main parts:

1) The patient must have the ability to give consent. Meaning, is she old enough, is she lucid enough, and does she understand.
2) Patients must be able to consent voluntarily. (They can’t be under duress.)
3) The patient must receive information. This means, according to the law, accurate information and full disclosure about their medical diagnosis and prognosis; the potential risks, benefits, and alternatives to the proposed treatment; and the risks and benefits of refusing treatment.
(The source of this list was Nursing2005, Volume 35, Number 3, pg. 24)

These seem straightforward, but as with anything connected with pregnancy, labor, and delivery, they are not. I came across this fascinating study in the British Medical Journal that talks about what happened in two hospitals when women were given an information pamphlet on ultrasounds. The study used “informed choice” as its definition, but informed choice and informed consent are synonymous. You can read the study at: http://bmj.bmjjournals.com/cgi/content/full/313/7067/1251/
a?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=informed+consent+in+
pregnancy&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&
resourcetype=HWCIT

The gist of it is, the ultrasonographers thought the information pamphlets were biased and would cause too much anxiety in women. This is despite the data being based on findings of randomized controlled studies. There were to have been three hospitals in the study, but the ultrasonographers in the third hospital withdrew their support and refused to take part because: “Their objections focused on the credibility of the evidence reported in the leaflet (box 1); the likely effects on women's anxiety; reduced uptake of scans and disruption to the hospital's organisation; and reinforcement of ultrasonography's poor safety record as reported by some media (box 2).”

This study sums up many of the concerns about informed consent. Are women truly receiving “accurate information and full disclosure about their medical diagnosis and prognosis; the potential risks, benefits, and alternatives to the proposed treatment; and the risks and benefits of refusing treatment”? If you’ve ever had an epidural, were you told it could increase your chances of running a fever, which could lead to you and your newborn being treated like you have an infection, including a full sepsis work-up for the baby, including a spinal tap? Were you told that it would increase your odds of having a c-section? If you weren’t, than your rights of informed consent were not met.

In thinking specifically about VBAC (Vaginal Birth After Cesearean), when a hospital tells women they cannot even attempt a VBAC there, that is in direct violation of the second and third tenants of informed consent. There is no voluntary consent involved, and women who were given truly accurate information would know that VBAC is at least as safe as having a scheduled c-section.

Maybe you don’t care. Maybe you are okay with the doctor giving you just enough information to get you to agree to the procedure that your doctor truly feels is necessary. If that is the case, then you only need to say to your doctor, “I’ll do what you think is best.” The doctor might hem and haw, but she will give you an opinion eventually. Then just follow right down the golden path the doctor has laid out for you.

But for the rest of us, that isn’t acceptable. I choose to have a medical partner, not a surrogate parent. I want accurate, scientific data, then I will match and cross-reference that data with my values and experiences and judgements, then a decision will be made.

Really Ridiculous Story #2

Got a call from a friend this morning who had this story to share:

She had dinner with a 40 year-old friend the previous evening. This friend of a friend, whom we’ll call, Lisa, had given birth to her first child about 2 months prior, and was ready to share her birth story.

Lisa’s water broke. They went to the hospital where an induction was begun. Six hours later, she hadn’t progressed at all, so they gave her an epidural. She dilated a couple centimeters. Her doctor came in, said, “Well, you aren’t progressing, we’ll give it a couple more hours, then we’ll do a c-section.” As expected, nay even as requested, a couple hours later, the doctor comes in, “The baby isn’t handling labor well, let’s do a c-section.”

Obviously, this is an abbreviated version of what took many hours to occur. The baby was born with no problems, and mother and baby seem to be doing fine. The mother was effusive of her praise of her doctor and how the doctor “saved my baby.” And then Lisa said, “I didn’t know that walking around and moving, getting off my back, would have made a difference during labor. I just didn’t know.” Lisa is a sports medicine physician.

What is there for us to take from this story:

1) The doctor did not “save her baby.” The doctor and the medical interventions were at least part of the cause of any distress the baby may have had during labor. Laying flat on your back, in bed, as it seems must have been the case if she was hooked up to an iv receiving pitocin so she could be monitored, will cause distress to a baby. Good grief, we’ve all read the books that tell us not to even sleep on our backs, let alone lay on them for any length of time.
2) I will say it again, you cannot trust your doctor to “take care of you” during pregnancy, labor, and birth. Apparently none of the hospital staff: nurses, doctor, interns, even the janitor for goodness sake, took it upon themselves to tell this woman, moving during labor is going to make a big difference. Or, here’s a breast pump, let’s try and get those bodily hormones to work for you. She was flying blind and she didn’t even know it.

As my friend pointed out, this woman may still have ended up with a c-section, even if she had been up moving, doing everything “right.” But she’ll never know, will she.

Oh, and by the way, this is the same physician my friend is using to deliver her baby. Things could get very interesting.

Where's the trust gone?

A friend just called to discuss her ultrasound today. She’s 36 weeks pregnant, first baby, in extremely good health, relatively normal pregnancy. Her doctor told her the ultrasound showed amniotic fluid levels on the low side of normal (7 on a scale that goes from 5 to 20). Doctor suggests a non-stress test twice a week every week until the baby is born and “We’ll induce at 38 weeks.”

My friend’s response, “Why?”

Doctor’s reply, “Well, it’s one option. We’ll discuss it at your appointment on Thursday.”

So, what do you do? What does she do? How would I handle it?

This post is not about the specifics of the limits of an ultrasound or what a non-stress will show and how accurate are these pieces of information. My friend will be searching for those answers as she prepares for her appointment on Thursday. This post is about the trust that needs to be present between the two or three people who will be sharing one of life’s most amazing, wonderful, and difficult events: labor and birth.

Medicine in the obstetrics world seems to be becoming more and more complacent about changing the way women give birth. "http://www.slate.com/id/2142622/?nav=navoa" (See “Pregnancy is shrinking" at the end of the article.”) I believe this is a mistake for many reasons. But that is the subject of many posts and the many months I have ahead as this blog matures.

One of the reasons for these changes is due to “defensive medicine.” As my husband puts it, the sooner the doctor can say, “I have concerns,” the better it would look in court. This is not to say that the doctor doesn’t have valid concerns, but is she able to screen out self-protection from baby and Mom’s best interests? Doctors are human, too. They want to do well, have people like them, be successful. But in obstetrics, I think a line has been crossed. I no longer believe it is consistently about the health and safety of the mother and baby.

And that means the mother and her partner have to decide who they will trust. Do you trust the doctor who doesn’t give you options or tell you the downside of a procedure, but only tells you what “we’ll be doing.” But then you go home and check out the information on the internet and you learn the research isn’t cut and dried. There are risks to being induced or having extra ultrasounds or taking the gestational diabetes test. And everything you read confirms your feeling that everything is fine with this baby, that having this extra information isn’t going to change your mind.

You decide to discuss this with your doctor, who then also has a choice. Does your doctor trust you to not sue if something goes wrong? Of should she push you to do what she wants, in the best interest of everyone involved, including herself?

Why is having a baby so complicated? When did it turn into a politically charged environment? Is it because doctors are trained to think they are the only ones who know best? Has medicine embraced the internet and its creation of an easily educated, or seemingly educated population, or has it rejected the notion that someone reading medical studies could have anything valid to say about the field of medicine?

What I know is this: the c-section rate is more than 30% in many areas of the country. This is not because nearly 1/3 of women are incapable of growing healthy babies and delivery them. I also know that with any intervention, even something seemingly innocuous like an ultrasound, there are risks. Women have to know that they cannot just take their doctor’s word for things anymore. That is no longer the safest option, maybe it never was.

So, back to the original question, what do you do? What does my friend do? What do I do?

1) You choose a health care partner you like and trust, throughout the pregnancy.
2) You ask your doctor, “Why?”
3) You ask your doctor, “What are my options?”
4) You listen to your gut and what it tells you about what your doctor is saying.
5) You do the research.
6) Once you’ve made the decision, be open to more information, but trust you have made a good choice. Our midwife wouldn’t have chosen to go with a c-section when we did with our footling breach first baby, but we were totally at peace with the decision and had a great time because of that.
7) If something negative happens, but you’ve had a trusting, respectful, open relationship with your health care provider, please think not just once, not just twice, but 15 times before you decide to pursue a malpractice lawsuit when the malpractice attorney calls you on the phone. Just as I believe women will have to be the ones to change the medical model of obstetrical care, they will also have to be the ones to give doctors reasons to stop practicing defensive medicine.

This is a partnership. Partnerships must be based on trust if they are to be healthy and successful.

What’s my friend going to do? She’s going for the first non-stress test to see what sort of information can be gathered.

What would I do? I wouldn’t have gone for the ultrasound today based on the weak reason the doctor gave for performing it.

Now, what about you? What’s your relationship like with your health care partner?

Pregnancy in fast forward

As a reminder of the joy and wonder of pregnancy, here’s a link my husband found to a fun video created by a young couple.



Enjoy.

An Attempt to Investigate Late Pregnancy Ultrasound

I’ve been researching this topic for several hours throughout the day now. I’ve learned a great deal:

1. It is no wonder doctors may not have time to stay up on the latest research.
2. Much research has to be done to prove things don’t make a difference.
3. It seems more questions are created than answered by much research.
4. It is very tough to find answers to simple questions.
5. Ultrasound and sonogram appear to be synonymous in the literature.

I’ve spent my time at sites that have impeccable reputations: Journal of the American Medical Association (http://jama.ama-assn.org/), The Lancet (www.thelancet.com ), The American Journal of Obstetrics and Gynecology (http://www.ajog.org/), The Cochrane Library (http://www.moh.govt.nz/cochranelibrary), and Midwifery Today (http://www.midwiferytoday.com). In addition, I’ve only used studies that were from 1994 or later. If you would like the full abstract and publication information from the studies I’m presenting, please email me at jennie@windyhouse.net. I’ve not included that information in this post for the sake of your time and my sanity.

Here’s what I didn’t find: What is the +/- discrepancy in the birth weight of babies who’ve had an ultrasound in the third trimester? What is the accuracy of palpation (using your hands) to determine birth weight? (Why use the machine if the hands do just as good a job?)

Here’s what I did find:

This article first appeared in Midwifery Today Issue 51, Autumn 1999
(Note from Jennie: I am giving you the whole of this section from Midwifery Today not because I want to place more emphasis on it, but because it didn’t have a succinct summary as the other abstracts do.)

“One of the promises held out by antenatal scanning is that obstetricians will be able to identify the baby with problems and do something to help it. A German study from Wiesbaden hospital (Jahn et al., 1998) found that out of 2,378 pregnancies only fifty-eight of 183 growth retarded babies were diagnosed before birth. Forty-five fetuses were wrongly diagnosed as being growth retarded when they were not. Only twenty-eight of the seventy-two severely growth-retarded babies were detected before birth despite the mothers having an average of 4.7 scans.

The babies diagnosed as small were much more likely to be delivered by caesarean - 44.3 percent compared with 17.4 percent for babies who were not small for dates. If the baby actually had intrauterine growth retardation (IUGR) the section rate varied hugely according to whether it was diagnosed before birth (74.1 percent sectioned) or not (30.4 percent).

So what difference did diagnosis make to the outcome for the baby? Pre-term delivery was five times more frequent in those whose IUGR was diagnosed before birth than those who were not. The average diagnosed pregnancy was two to three weeks shorter than the undiagnosed one. The admission rate to intensive care was three times higher for the diagnosed babies.”

From the American Journal of Obstetrics & Gynecology in 2003.

Conclusion: Term birth weight estimates that use ultrasonography are generally no more accurate than predictions that are based solely on quantitative assessment of maternal and pregnancy-specific characteristics. (Jennie explains: Meaning, knowing mother’s weight gain, fundal height, gestational diabetes status, and family history)


From the American Journal of Obstetrics & Gynecology in 1994.

CONCLUSIONS: With either the single or multiple examination approach birth weight percentile estimates were within 10% of the actual birth weight percentile approximately 50% of the time. Multiple ultrasonographic examinations provided little improvement in prediction of birth weight compared with a single observation. Multiple measurements of the abdominal circumference percentile may provide improved accuracy in identifying large for gestational age and small for gestational age fetuses. (Jennie notes: This was a study of only 263 patients, but still fascinating.)

From the Journal of American Medicine in 1996.

CONCLUSIONS: For the 97% of pregnant women who are not diabetic, a policy of elective cesarean delivery for ultrasonographically diagnosed fetal macrosomia is medically and economically unsound. In pregnancies complicated by diabetes, such a policy appears to be more tenable, although the merits of such an approach are debatable. (Jennie notes: This was a review of the literature looking at over 6,000 women.)


And here’s one last anecdotal piece of information. We had an ultrasound with our first child on the day she was born; several actually. This was done to confirm that she was a footling breech, and to confirm how she was handling attempts at external version. The first ultrasound which was done, which was a full-length, diagnostic ultrasound, indicated that she would be around 6 lbs, 13 ozs. Our midwife, through palpation, estimated her birth weight at 7 lbs. Birth weight of first child: 7 lbs. 1 oz.

What a tiny 8 lb baby!

At the local ICAN (www.ican-online.org) meeting a few nights ago, I mentioned I had started this blog. They had great ideas for things to write about, and my favorite one was a Really Ridiculous Stories Page. If you have a story of a woman who ran into some ridiculous action or suggestion from someone during labor and birth, please send it along. I’m in the process of amassing stories from my group of friends now. We’ll see what we come up with.

Here’s the first story that a friend was more than willing to share with me this afternoon. To give you the context, and to, possibly, reassure you about the veracity of this story: this friend is an attorney, her husband a religion professor. Two kinder, more honest people you would be hard pressed to meet.

Take this as you will:

Anyway, please feel free to share our could-have-been-horrible baby story.
As for the details: At 28 weeks the MD told me my fundal height was
measuring too small and that if Emmaline continued to develop at this rate
we'd be lucky if she weighed 5 lbs. (This didn't concern me too much
because Howard had been a small baby and I'd read that these things were
genetic.) They sent us for another ultrasound which showed that she was
developing just as she should but the MD told us she were concerned that
Em wasn't developing as quickly as she should and that something might be
wrong. (The research I did independent of the MD showed that a smaller
fundus height is common in women who are long-waisted. Although I'd never
describe myself this way, various people have throughout my lifetime.
Apparently in long-waisted women a baby has more room to grow vertically
and doesn't need to take up so much horizontal room, ultimately resulting
in a smaller fundus.) As my pregnancy continued my fundus grew, but not as
much as they wanted it to. At 40 weeks, however, my MD assessed all of the
factors: I was 2 cm dilated, the baby had dropped, and I was effacing, but
I hadn't experienced any (not even noticeable Braxton-Hicks) contractions.
She suggested inducing right away and, not knowing any better, we followed
her suggestion. A delivery room wasn't available for scheduling for four
days (it is a very small hospital). As soon as they got me in (a small
dose of pitocin, a break of my water, and 8 hours later) Emmaline was born
weighing in at 8 lbs, 13 oz. So much for the "science" of obstetrics!

So, to summarize for those of you who weren't following along: The doctor
was concerned that the baby was too small, so she suggested inducing at 40 weeks. Hmmmm.

This leads me to tomorrow’s topic which will be, what does an ultrasound in the late stages of pregnancy actually show?! Notice how this email sounds like the reverse of the situation in the post “Where this all begins.” It seems much faith is placed in an ultrasound by the medical community, is this simply faith based on tradition, or on science? We'll see what the research says tomorrow.

Pregnancy vs. Cancer

If you are going to treat pregnancy as an illness, then pregnant women get the same rights as patients dealing with cancer.

This argument/discussion has long been tossing around in my mind. It is coming up again now because Central Iowa, where we currently live, is not a friendly place for women who want to have a VBAC (Vaginal Birth After C-Section.) To summarize, it amounts to this:

Women who choose to use a physician and a traditional hospital to give birth are being given fewer and fewer choices about VBACs. This means, they are being told that the doctor will not work with them to help them VBAC. Or, they are being told the hospital where they will be giving birth does not “allow” women to VBAC. In essence, due to fear of liability, doctors are telling women they have no choice but to plan a repeat c-section.

It will take another post to go into the dangers of a planned c-section vs. a VBAC. Suffice it to say for now, the data shows a planned c-section should not be a simple, quickly made decision.

My issue is this: birth, labor, and delivery continue to become more and more medicalized by the medical establishment. Women are allowing this to happen, without asking for the few benefits of such treatment. Women are not demanding to be treated as rational, intelligent beings who understand birth and understand the consequences of their decisions.

If I were a cancer patient, my doctor would have the right to discuss my options for treatment: surgery, chemotherapy, or watchful waiting, or whatever else I had as options. Then, in consort with my physician, we would come to a thoughtful decision on the best way to progress.

Therefore, if, as a pregnant woman, I am being treated as though I have an illness for which I need “treatment,” then I should be given the options, then be allowed to make my decisions, being fully informed of the options and potential outcomes. This is not what happens when a doctor or a hospital has the right to tell a woman she is not “allowed” to have a VBAC.

And as for the reason given which is generally some version of “blah, blah, blah, high liability, risk of being sued, blah, blah, blah…” This is “defensive medicine” and it does not have the patient’s best interest as its main focus.

I’m going to do some research into physicians who get sued: what the research shows about who they are and how they act. Women are taking the blame for any and all decisions, and though being sued or even the fear of being sued must be horrible, endangering someone’s health because of it seems a little off kilter.

Where this all begins.

The impetus for this website came from the following series of emails from a friend.


November 25, 2005
Well, we had an US 2 weeks ago (at 32 weeks) and found
out the baby was already measuring around 5 #! When
we saw the doctor this past Tuesday, he is very
concerned about the size. He is estimating that the
baby could be 10-12 lbs when born if I go to full
term. (Sounds like fun for me!) I guess that means no
newborn clothes! We are going to have another US at
37 weeks to check size and position. If it still
looks like the baby is that big, they are going to
induce me at 38-39 weeks to at least give me a chance
to have the baby naturally. But they are already
mentally preparing us for a C-section.

December 22, 2005
Well, here is the latest baby update. As of our last
US on Tuesday the baby is "at least" 9 lbs 3 oz! They
say to give or take 1 lb so the range is 8 lb 3
oz-10lb 3 oz as of right now. i have not begun to
dilate, efface, and the baby is not even in my
pelvis. They are thinking that if they let me go full
term (I am 38 weeks today) the baby will be between 9
1/2 lbs and 11 1/2 lbs!! (Sounds like fun for me).
So they have given up 2 options...induction or
scheduled c-section. The doctor has already told us
that if they induce there is still a 60-75% chance
that I will end up with a c-section anyway. If I am
able to have the baby vaginally I will have quite a
tear and they are not sure that the shoulders would
even fit out. SO we are about 99% that we are just
going to go for the scheduled c-section to reduce all
the risks and high fetal distress with induction.

January 3, 2006
Baby X was born Dec 29th at 10:09 am. She weighed in at 8
lbs 10 oz and was 20 1/2 inches long. She is
absolutely perfect with 10 fingers and 10 toes. SHe
also has a head full of dark black hair (I guess that
explains all my heart burn). We ended up having her
by c-section which was a good thing. She still was
not in my pelvis and by her head size and her shoulder
size, that is what we would have had to do even if we
had induced. Her shoulders even got "stuck" a little
on the way out with the c-section!

This is a friend of mine with whom I was not close enough to call and say “What the heck are you thinking? What does the doctor think he is “saving” you from?” Instead I sat at home, shook my head and waited for the outcome that the doctor wanted. Please understand, I’m not saying a vaginal birth would have been a joy ride for my friend. Then again, it might have been the most empowering, joy-filled day of her life.

I’m not saying the doctor doesn’t have vastly more experience than I do, but, one thing I do know, this doctor has never given birth, never will give birth, and is apparently unaware of the amazing power and strength of the female body. You will notice there is never any mention of fetal distress or health issues of the mother.

The crux of it is this: my friend was set up to believe her body was not going to work. Not only was the weight estimate off, as the research shows is not unusual for this late in a pregnancy, plenty of women have given birth to babies much bigger than 8lbs, 10 ozs. The doctor must have even justified the decision by pointing out the head size, shoulder size and that the baby’s shoulder’s “even got ‘stuck’ a little on the way out with the c-section." As you are probably aware, incision size has nothing to do with a baby’s ability to fit in a pelvis.

My friend, as far as I know, was happy with the decision. She had a good recovery, she and baby both did well, are doing well. For me, she represents a trend I hear more and more from women. Women who don’t have complete information, and do not realize they do not have complete information. And, even more, doctors who see themselves in a protectorate role. Giving women the information they need to make the decision the doctor wants.

To be completely fair, I don’t know if this doctor truly informed my friend of all the drawbacks to a scheduled c-section. I’m going to email her right now and ask her.

Control.doc

My father is dying from prostate cancer which has spread to the bone. His doctor told him about 18 months ago that he had 6-12 months to live. Consequently, he’s been like the walking dead ever since then. But, that is a personal aside to explain why I’ve recently re-read the book How We Die by Sherwin B. Nuland.

On page 258 in the book, he writes a very honest, very insightful, fascinating description of doctors that struck home so completely.

"I have also been impressed with another factor in the personalities of many doctors, perhaps linked to the fear of failure: a need to control that exceeds in magnitude what most people would find reasonable. When control is lost, he who requires it is also a bit lost and so deals badly with the consequences of his impotence. In an attempt to maintain control, a doctor, usually without being aware of it, convinces himself that he knows better than the patient what course is proper. He dispenses only as much information as he deems fit, thereby influencing a patient’s decision-making in ways he does not recognize as self-serving."

This very issue has long been a source of discussion for my mother and me concerning my father’s medical care, but it is even more of an issue in the OB/GYN world. In the c-section education/support group I attend each month, there have been so many times when a woman looks back at her birth and says, “But I just didn’t know. The doctor told me x, and that’s what we did.” Then, after educating herself as a means of understanding a birth that may have been very different from her dreams, or in preparation for another birth, the intelligent, rational woman learns not only did she not get complete information, she may have gotten false or inaccurate information.

And who is at fault: the doctor, who is following tradition or hospital protocol; the woman, who didn’t fully realize she needed to learn as much as possible about all the aspects of birth before she ever goes into labor; the nurses, who see labor after labor after labor; the partners, who are just as overwhelmed as everyone else; or the whole dang system that sets up doctors to fear lawsuits, women to think someone is there to protect them besides themselves, and insurance companies who have inadvertently created a system that pits people who should be standing together, against each other.

I do know this. It will be women who change the system. Women have got to take back birth: it is their right, their tradition, their trust from the universe.