Birth.Truth.Change

Comment

Comment by Susan B. on February 13, 2010 at 2:05am

IMO, failure to obtain informed consent is intentional to get the woman to do what the provider wants. We can only spread the word to do the research on-line and in-person, and report doctors when they cross the line.

Lancet link on blog:

"We analysed rigorous research from the past decade and discuss four forms of violent abuse by doctors and nurses: neglect and verbal, physical, and sexual abuse. These forms of violence recur, are often deliberate, are a serious violation of human rights, and are related to poor quality and effectiveness of health-care services. This abuse is a means of controlling patients that is learnt during training and reinforced in health facilities. Abuse occurs mainly in situations in which the legitimacy of health services is questionable or can be the result of prejudice against certain population groups."

Comment by Rachel on January 6, 2010 at 9:04am

Sara-I completely agree with you and informed consents is one of my pet peeves. I have changed doctors for similar reasons. I would really like to see some change in this area for pregnancy.

Comment by Sara on January 5, 2010 at 11:49pm

I want to jump in and offer my thoughts & experiences on informed consent. All drs know that this is legally and ethically required. The sad fact is that (most) drs don't make access to information and forms available at their office, because they don't really want you to exercise true informed consent or question them about their medical advice. They want to give you info on an as needed basis and have you trust/follow their recommendation. I believe (mostly) they do just what it takes to, legally, be able to say they informed you & let you decide--and that means your signature on a piece of paper, nothing else. I don't believe the practice of most docs comes close to meeting the true definition of what informed consent is/should be. And this is not just specific to OB's or Maternity care.

My personal experiences with being an informed consumer when it comes to medical treatment and practicing my right to informed consent/refusal:

1) When my son was almost 2 his testicle became swollen, no pain or redness, no indication that it bothered him at all. I called my FP doc & he sent us to hosp for an ultrasound to rule out dangerous condition that could damage the testicle then saw us at his office. Turns out that wasn't the prob, it was a minor (and often only considered cosmetic) condition called a hydrocele--fluid from abdomen leaks through a small hole in abdomen and into the scrotum. He sent us to pediatric urologist for consultation. Within a few days the swelling was gone. When we saw the urologist (after like 5 min in his office and with no swelling remaining in his testicle at all) he said my son needed "exploratory" sugery to rule out a hernia (even though based on extensive exam by my FP (and no exam by the urologist) he had no symptoms of a hernia). When I began asking him about the risk vs benefits of doing surgery on such a young child he scoffed at me--actually rolled his eyes at me! Told me that at this age he would "bounce back within a few days." I was worried about the increased risk of the anesthesia on such a small child he dismissed it and said it was better now than later. Said that it was routine surgery (maybe for him but cutting into my baby is NOT routine for me!) Said that these things have to be surgically repaired 100% of the time--even though that was not what I was told by my FP nor what my research said--and we should just go ahead and do it now. He seemed irritated by my questions. I wasn't done discussing it but he was and he headed towards the door, telling me to get with his sugical nurse on my way out to sch the surgery. WHAT! In under 15 min he diagnosed, decided on surgery, and covered all the points of informed consent? We did not sch the surgery or ever return to that doc. Took a wait and see approach (which my FP doc recommended) and now 2 years later have no other probs at all with it.

2) Just after he turned 3 my son started complaining that his back hurt. Sometimes he would even wake up at night crying saying his back hurt asking us to rub it. My FP doc checked it out. He showed no signs of spinal malformations and no physical or range of motion limitations. But he kept complaining so we were referred to a pediatric bone dr so he could get xrays. (FP doc felt they would have more luck getting good xrays on such a small child than a regular radiologist). First xray showed his spine was curved 9degrees to the right. I was concerened but doc said not to worry. Was told to notice patterns of when son complained about it and bring him back for more xrays in 4 weeks. Which I did. Only thing I noticed about the pattern was that it was in no way related to his activity level or activities he was doing. 2nd set of xrays said his spine was now curved 11degrees to the left (this means his spine shifted 20degrees in 4 weeks, not possible) The doc said that could not be accurate and the results of the xrays were not reliable, typical trying to xray spine of such a small child. He recommended a bone scan--an outpatient procedure done at the hosp where they would put radioactive dye into his system then take a series of xrays over a period of 4-5 hours. I began asking about how those xrays would be more reliable and the risks of the radioactive dye on top of several xrays in such a small, still developing child. He actually laughed at me. His response? "You have a microwave in your house don't you? And you carry a cell phone" (Yes to both but neither came with a lead vest or a wall I am supposed to stand behind when I use them!!!). At that point I thanked him for his time and told him I would call to sch the procedure if I decided to do it, gathered up my kid and hightailed it out of that office! Never did do the scan but I have since noticed a pattern in when my son complains about his back--when he doesn't want to go to bed, or wash his hands, or clean up his toys, or go to bed. :)

Although both docs were recommending radical, invasive procedures on my baby, both seemed irritated and suprised when I wanted to discuss it before consenting to/scheduling the procedure. Both were patronizing and condecending. Neither seemed interested in informing me and letting/helping me decide. Both expected me to sch the procedure and get a brief explination of the risks when I showed up the day of the procedure and signed the form. Isn't it kinda late at that point to "decide" if I am there to actually get the procedure done? Doesn't the informed consent I sign become just a formality at that point? Too little too late, right?

I know this is long but I wanted to share my experiences. Based on what I have experienced: if you get a doc that believes in your right to and encourages you to practice informed consent you are very lucky (as I am w/my FP doc). Otherwise, the burden is on us to demand it and arm ourselves w/info on medical conditions/procedures being recommended so that we can be sure our rights are being respected. And be selective consumers. If a doc does not respect informed consent and the process then we find a different doctor. I believe that is the only way docs will begin to practice and respect our right to informed consent/refusal.

As for forms: I would love to see an information sheet for procedures being recommended, very much like the info sheet you get when you fill a prescription.

Comment by Kasie on January 3, 2010 at 10:38pm

Although a woman should "trust her body" and/or "trust the process," no one can expect (especially the mother herself) to be an expert at birthing if she's never done it before.
Excellent point, Kaitlin. I think it's easy for us who have gone through pregnancy, labor, and birth to trust the process. But when a woman comes along, pregnant for the first time, she needs something more. And not what is currently fed to her by the mainstream medical establishment.

Comment by Kaitlin Rose on January 3, 2010 at 10:13pm

but on a side note, I just want to say how grateful I am for people like Rachel how are trying to make a difference in hospitals! :)

Comment by Kaitlin Rose on January 3, 2010 at 10:10pm

April, I totally agree with you when you said, "it would be ideal if physicians allotted an extended prenatal visit to dialog concerning hospital protocols. Facing the unknown is scary for anyone. Patient education contributes greatly to a sense of empowerment and satisfaction."
I'm working on a piece - it's a behemoth actually, about Why a Woman's Birth Experience Matters. Informed consent is a big part of it. Although a woman should "trust her body" and/or "trust the process," no one can expect (especially the mother herself) to be an expert at birthing if she's never done it before. So many problems occur when mom relies on doctor and doctor relies on medicine/intervention. I think it's sad that often times new mothers have no idea what to expect. It takes a lot of information and a really good childbirth education class (outside of the hospital) to help ensure educated and prepared labor/birth.

We're going to try to make birth better, because I have a feeling that if it's not a grassroots organization, it's not going to happen. And, we have a better chance at influencing other mothers and mothers-to-be as mothers ourselves than changing the entire medical model.

Comment by Cherylyn on January 3, 2010 at 9:22pm

There is a similar page in my doula manual that outlines questions to ask when a procedure or intervention is suggested, and I find it very helpful. Rachel, I may have share it with you in the past. I think it would be wonderful for OB's to talk with their patients about all of the possibilities before they are considered full term, but I'm not sure they have the time to spend doing that in prenatal visits. Most OB's would have to revamp their practice a bit to make it work.

Comment by Rachel on January 3, 2010 at 9:05pm

April, I like your BRAND. I'll look into something like that. I'm not exactly sure how I want to go about this, but I'm tossing ideas around. I would love it if the obs could talk to the moms about this. They do have the established relationship after all, but I just don't see that happening.

Comment by Kasie on January 3, 2010 at 12:53pm

Well, this is exciting! I think we need change in so many areas, not the least of which is the availability of trained home birth midwives. I chose to have an unassisted birth, and am 100% comfortable with it. But there are so many women whose only options are a hospital birth or UC, and they are uncomfortable with both. They are having to settle with one or the other, and I think that's a shame. Every woman should be able to give birth where and how she feels safest.

Comment by Rachel on January 3, 2010 at 12:38pm

Just added a discussion group to add webpages/blogs to. I'll add mine in a little bit, but just thought I'd let others know it's here. Once we get a good list, I'll announce it on the main page.

Kaitlin, I love your ideas. I would love to add any research oriented stuff too. If anyone has any research stuff they want to look up, I have access to a pretty big library. Just let me know.

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