Tuesday, August 7, 2007

informed consent for all

When I speak of informed consent, I speak from a truly heartfelt place of love and concern for everyone.

Contrary to what it may seem, I have no "big dream" that all women do X Y and or Z with their babies or their bodies or their children or their lives.

What my "big dream" IS, is that we as a people have real access to real scientific, factual, experiential, historical truth. Then and only then will there be a level playing field, so to speak, for mothers and babies and their families.

Bottle vs. Breast
Hospital vs. Homebirth
To vaccinate vs. To not vaccinate
Circumsize vs. Intact
Disposable diapers vs. Cloth
Cry it out vs. Sleep/nurse 24/7
School vs. Homeschool
Stroller vs. Sling

this list can go on and on. But whats with all this "VERSUS" stuff? It sounds like a bunch of battles, a bunch of fuel on the fire, a bunch of self righteousness, a bunch of seperatist language and imagery that mimics a male model of aggresion and conflict and destroys the very foundation of Creating a Village, Circle of Sisters, and everything we women need.

Noone is so black and white in their actual living, because life is not black and white. We can feel passionately about something and then life throws us a curveball and we are back to square one. I always joke that I knew it all about parenting until I actually had a child.

I want the other Mamas and babies and families to not have to suffer BECAUSE THEY DIDNT KNOW. thats all.

I want the other Mamas to spend their precious time and energy on their families and not on regrets.

If that is so wrong, or if that makes me militant or polarized or biased or one sided, then I will work on it. I am not here to judge, but I am also not going to hold my toungue like a good little patient when I want women to know some truth and some fact and some info and some options. I did that for many many years and that is not me anymore.

What do I want? What is my point?
I would love for women to not have to spend their entire pregnancies, postpartum period and all their years of child rearing to be filled with decisions that they made under duress, under anesthesia, out of ignornace, out of sociatal pressure, out of conformity, out of fear.

Access and full disclosure for women. From the grassroots level to the healthcare system to the coffee shops to the media and so on and so on.

I'm sure the person who discovered that lack of hand-washing was killing women by the millions from puerperal fever had a rough time selling his story at first, too. Its MUCH more within folks' comfort zone to think that someone they love went through something really awful because "life is mysterious"--and life IS mysterious. and bad things DO happen for reasons we do not comprehend. B U T, why withold our stories from each other?
why
why
why
why
why?

15 comments:

Angi said...

Joy,
I loved this post. It came from such a great place and I really got you. I think that all of us would want to share what we have with love for our sisters and especially for our daughters. I feel like other women will hear what we say when it comes from a place of love and understanding, and sharing of personal experience. Passion is so great, sometimes to a newbie to all this sort of thinking though, the passion can seem a bit--overwhelming maybe? I don't know the right word. Like you said, there is really no black or white, but lots of grey and lots of choices that actually turn out okay. Informed consent is definitely what we need. Thanks for the discussion!

emjaybee said...

Aha, one of my pet obsessions. The gentleman who discovered the cause of puerpal fever was Ignaz Semmelweis

http://en.wikipedia.org/wiki/Semmelweis

His theories were NOT accepted by a (so familiar) arrogant and self-protecting medical establishment, and he had a nervous breakdown and died of age 47.

Trish said...

Yes, yes, yes.

I spent so much time regretting the way things went with my first pregnancy and delivery! Afterward I felt cheated because I realized that there was so much information that I hadn't gotten!

I want my daughters to have full access to all the information and options when it's their turn to become mothers!

And - many times all those "versus"es turn into some sort of compromise between the seemingly conflicting ideals. We delayed vaccinations and chose to skip a couple of them. We homeschool but enrolled Julia at the middle school for band class. I would've loved a home birth, but my husband was terrified of the idea so we compromised on the birthing center. As you said, it's all shades of gray! And mostly, when the decision is approached with love, it turns out alright! It would just be helpful if all the information to make the decision was easily available!

heather said...

Great post! I agree on all points. Informed consent is a powerful thing and is definitely missing for a lot of parents. And you're right-life does throw us curveballs and I think that is meant to humble us because like you said, nothing is black or white.

jeanius said...

great post. as a first time mommy, i made sure to inform myself with as much info as possible. i read how to birth with no fear, and bought a thinking womans guide to a better birth(as well as a few more books-i was ravenous for info!). i wanted a home birth, but none of my care would have been covered by my insurance *eyesrolling*so it was hospitol, no meds, CNM. as good as it could have been under those circumstances. a four hour start to finish birth.
next time around, we are going to homebirth with a midwife and take some birthing classes to learn pain-releiving techniques. i know i can do it, and what's more, it's right for me.
thanks for sharing your knowledge and feelings.

Louisa said...

Love what you write mama, but I wanted to just point out that there is no informed consent about circumcision. It's not a parent's choice. It's a child's penis, not his parent's. No one has the right to surgically alter a babies genitals This is only a decision which can be ethically made by the infant himself when he is of age to make that informed choice himself.

Housefairy said...

Louisa-
thank you for stopping me in my tracks this morning. You are so, so right about circumcision not being our choice whatsoever. I just sat there and really re-thought about something that I had thought I had already thought about as much as poosible! :)

Thank for pointing this out.

I guess why I brought up circumcision was because, at the time of our first son's birth, I knew NOTHING about what really goes on. I can and have cry anytime I think about how foolishly I handed over my newborn baby like that. I cant ever justify how I could consent to ANY surgery of ANY kind just like "ok". I am ashamed that I didnt research it, ashamed that I didnt know better, and angry that the hospital came and woke me up from my first wink of sleep in about 42 hours and asked "if this would be a good time to do his snippey snip" (I kid you not)

None of our other boys were circumcised.

It is the parents' jobs to research stuff, and I am so proud and happy for those who did. I think socio-economic backgrounds, maternal age and other factors can play a huge role in whether a mother to be would even know about the "good" books. DO the hospitals have a responsibility to tell us the truth about things? I would hope so, and when you think about it, its amazing how much accountability other institutions have and the hospitals lack.

Circumcising for religious reasons, to me, at least has more thought and meaning behind it than nurse ratchet whispering in your ear that its time for a snippey snip.

But it is the boy's body and I do not think we need to be cutting up babies or mamas like we do. So much cutting, so little true medical necessity.

Housefairy said...

Thank you everyone else for getting where I was coming from on this one.

I do not need universal agreement, and I am finding out lately how tumultuous and what a learning experience it can be when someone strongly disagrees with you, or totally misinterprets what you have said! I am just happy for the comments, and for the opportunity to share with more people than my hubby and cat :)

Thanks for the link, emjaybee. Unbelievable, yet not. What a frustrating story.

Trish, I am so thankful for you on here, you have no idea. "When the decision is approached with love" is the best quote ever. I can truly say that all the decisions that I have made, the big ones anyway, that I did approach with love and true Mothers Intuition were spot-on everytime.

Angi--I am really happy that this one sat better, and I have always been one to use 'over the top' and overwhelming verbage, ever since i was a tot. Its just me.

everyone else thanks for being part of this discussion. This kind of stuff is the closest i get to a Mother's Cafe and I am hooked on it!

mama k said...

good post.

I find it so frustraing how few moms really want to be informed. It is easier to just go with the flow, trust what your doctor says and take the easy way.
I am the first of my friends to have a baby. I'm the weird one for doing cloth diapers, natural birth, not circumcising, etc. And I'm not even all that extreme by the more hard-core circles *ahem* MDC *ahem* :)
I don't push my views on others. I try to share information with them, but honestly, most of them don't want it.
While informed consent for all is a nice ideal, I really feel it's up the parents to research for themselves. The info is there and easy to find.
Meanwhile I have had to learn that most people are happy to follow the crowd... while I'm obesessively researching every parenting choice that comes up.
And well in the end, things generally turn out OK and you always can look back and say there were things you would have done differently.

Housefairy said...

It IS up to the parents to do the research themselves, sure. Thats how I got to be who and where I am today...but only to a degree. That isolationism is hindering progress and keeping us all apart, at a high price.

I think it is a shame and not right that only certain people who happen to happen upon extremely non-mainstream books or websites or, for the very lucky few, FRIENDS should be the ones who are PRIVY TO facts and figures and practices that, albeit uncommon in 2007, are tried and true ancient ways of Mothering that have the best interests of the mother-baby-family in mind.

I worry that it is only the priveledged few who live in a crunchy town, or who have access to some books or a computer, or have a support network of groovy pals, (or not at all and are willing to endure being ostracised, unsupported, different, marginalized)who we think should HAVE ACCESS TO FACTS AND OPTIONS.

I think thats horrible.

I think this kind of thinking reeks of classism and worse, and it does nothing to facilitate change.

I do not mean to jump on what you said here, but only because it is such a common idea, this one of "I had to do the research myself, so should you" that I attack it.

It leaves out so, so many women who deserve truth as much as you or I. Access to midwifery care. Access to breastfeeding info and support. Access to information when and if they enter the hospital. Access to know what exactly circumcision really entails. Access to all the stuff you and I had to learn on line, in books, from our own suffering, perhaps.

I dont think alot of people realize just how many pregnant women today have no CLUE about these kinds of things. Because their family didnt tell them and they dont see it on the TV and they dont read it in the pamphlet at the doctor's clinic and it isnt in the glossy mags at the grocery checkout.

I have no way of knowing who "wants information". When you meet a woman, you have to remember that she comes with a set of ideas about things, which come from her friends, the media, her family and society, and hopefully, somewhat, from her heart. If people dont seem to want to hear anything out of the ordinary, thats ok. At least they will have heard ABOUT it. At least they will be able to say that they have HEARD about these other options. Maybe that can be enough to start.

Angi said...

Joy-reading all your experiences, I think you are a very good resource for other expectant moms. Sounds like you have had the full range of births. I also, (though not to the same extent) have had four very different experiences. I think you should not hesitate to say-wow, I am so glad I had a midwife, or- my home birth was by far the best of all my births, or whatever else you feel to anyone you meet. I think that most pregnant moms are looking into their choices and if you ommit your side then they will not have your voice and your choice to look into. We do need to take care of each other. Breastfeeding moms and moms-to-be can feel very isolated. We need to be public about our views. I think that our comments can serve as a catalyst to those around us and can really help them change their ideas and perceptions and prompt them to look into other options.

Housefairy said...

Thank you for that, Angi!

I think this is getting closer to where I wanted this to "go" now.

I want the voices of the homebirthing women to be as common and loud as the voices of everyone else.

In the media, we certainly have a long way to go--with the hospital births and all that goes with them being treated as acceptable, even humorous "parts of being a woman", this might be our last frontier.

But as far as simple word of mouth, internet access, and more societal AWARENESS that there are safe gentle non-interventive alternatives, I think it is not only possible, but a true quest that costs nothing to join but can save and preserve so so much for all the women babies and families, who, as of now, have NO IDEA WHAT THEY ARE EVEN MISSING.

Thats the real problem.

I am a Monkey's Momma said...

My passion. My pet. My downfall. This is how I describe my feelings toward informed consent.

I am trying so, so, so hard not be discouraged because I keep finding myself feeling like I am ramming my head into a brick wall any time I speak to anyone about it.

Worse than all of this is the journey I walk in trying to forgive myself for thinking I had informed myself before consenting on some major issues, and finding out in the long run that I had not even scratched the surface.

And, now, armed with this new information I can only wish I had known, it falls on deaf ears. I hear "I want to learn for myself", "I want to see if trusting my own judgment turns out the way I hope", "I don't want to hear your stories".....All I can do is keep telling my story. My truth. And hopefully other women will do the same.

One day our voices will no longer be a whisper.

We will be a cacophony.

Aimee said...

i'm officially linking you!!

Kelley said...

Joy,
I, thanfully, was one of the privileged few to have a crunchy friend when I first started on the path to motherhood. This dear friend lent me "The Pregnancy Book" by Dr. Sears instead of "What to Expect When You are Expecting" (horrible, horrible book). This friend introduced me to the idea of homebirth, and my life has never been the same since. I can trace most of the major decisions in my life since back to this one influential friend. I will be forever grateful that she was there when I needed her most.

Even so, I did not do all that I could to be fully informed. I thought I did, but like another commenter said, I realize now that I barely scratched the surface. If I had gone a little deeper, some of my experiences since would have been drastically different.

This is a great post. But I add my question to yours - how can I really make a difference to the women around me? How can I let them know that it doesn't have to be like this? Birth doesn't have to be like you described in your post, "A Nurse's Guide to Managing Failure." They don't have to be an unwanted nuisance at the birth of their own babies, as Angi said. How can I share this without seeming preachy and radical? How can we get past all the preconcieved notions of birth that can lead to such heartache and sadness, all of which is hidden behind the outward joy of having a healthy baby, no matter how it got there?