Thursday, June 23, 2011

Autonomy, Information, and Power

I find myself increasingly drawn to the principle of autonomy. It has been adopted by law or by custom in most Western countries. If patient autonomy were fully adopted and enforced, it could bring about substantial changes in maternity care. (More about this at tonight's talk.) We have a long way to go to reach true autonomy in both key areas: informed consent and the right to refuse treatment.

In a recent post on the surgical consent process, Dr. Nick Fogelson proposes that communicating risk by listing any and all possible risks in precise statistical fashion might not be the best form of informed consent. He comments that our current method of informed consent is
a bit like asking your neighbor bring your son home from school, and having her say “we may get hit by another car, I might run a red light, we may run out of gas on a train track, there might be a meteor that hits the car and kills us all…. but don’t worry I am a good driver and your son will be fine.”

The fundamental reason we do these consents is that we believe that in some way they will protect us in a lawsuit if something bad happens. For example, let’s say somehow I transect a ureter in my patient’s hysterectomy, I can say “See – I said this was a risk of the surgery… it wasn’t my fault!”

But isn’t that a bit ridiculous? Is telling somebody that something bad could happen actually a defense if that bad thing does happen? In some cases a problem is truly random, such as the development of a pelvic abscess after a hysterectomy, but in other cases it is not. There is almost no situation in which I could cause a ureteral injury and have it not be a surgical error. If it happens, I did it – and it was a mistake. Ureters are damaged in about 1% of hysterectomies, but its not like they magically get injured in 1% of cases. In 1% of cases the surgeon makes an error....

The trouble with the standard consent process is that it doesn’t deal with the real issue; errors do occur, and physicians cannot be perfect. By naming error-driven events as statistical occurrences, the process supports an expectation that surgeons will never make errors, and thus the corollary that any surgical error is a de facto breach of physician’s fiduciary duty.
Dr. Michael Klein recently co-authored several studies on attitudes of maternity care providers. He found that pregnant woman rarely have complete or accurate information on common birth procedures.
It should be noted that regardless of the type of care provider, many women reported inadequate knowledge of common procedures....When combined with evidence on the nature of obstetrical power and control, and research showing that many providers are not evidence-based in their views, (3) this suggests that even a woman with strong values and beliefs could find it challenging to assert her choices in the professionally controlled process of birth. Women, especially first time mothers, who do not have evidence-based knowledge, are likely to be particularly sensitive to negative attitudes toward birth procedures and processes, from providers and other sources.
A recent editorial by Jackie Tillett in the Journal of Perinatal and Neonatal Nursing, Politics, Power, and Birth,   explores power interactions between childbearing women and their care providers. She comments:
The power relationships between women and their healthcare providers limit the choices that women may have and may even constrain the discussion of choices. If the healthcare provider believes that choices should be limited to those the provider feels comfortable providing, other choices may not enter into the dialogue.

Ideally, decision making regarding labor and birth will begin during prenatal care. The antepartum period is a time of exploration and questioning for many women. Care providers can facilitate this learning with adequate time during appointments, concern for a woman's misgivings, and encouragement. Informed consent may and should initiate a discussion of risks and benefits of procedures and routines.

However, even though informed consent implies an understanding and agreement with a plan of care, too often a woman is influenced by her perception of the healthcare provider as an unbiased expert. This is true of her perceptions of physicians, midwives, and nurses.
Later in the article, she addresses the language of allowance and how it limits autonomy:
The politics and power relationships of the labor and birth process may be seen to revolve around the word "allow." To allow is to make possible through a specific action or lack of action, or to consent to or give permission. The concept of allowance gives the power to the healthcare provider, whether physician, midwife, or nurse and makes the laboring woman dependent upon this allowance. Allowance removes some aspects of choice and consent from the woman and makes her dependent upon the actions and beliefs of the healthcare provider. To define the services one offers to pregnant women using the phrases "I allow" or "I don't allow" transfers all control to the provider.
Remember that autonomy = informed consent + right to refuse. With both of those key factors weak or missing in our current obstetric climate, autonomy exists in name only. It's time to turn rhetoric into reality. Or in Dr. Klein's words: "It is going to take a revolution driven by women to change this, as practitioners are not going to change very soon. To the barricades!"

4 comments:

  1. Rixa this is a great post. I had a section for a slightly transverse baby after a lenthy induction (my son was born at 42W1D - guess its a good thing I consented to the induction since he was transverse).

    He's 18 months now and with a little time to reflect on our hospital birth I have two reactions. When I first started telling my birth story I caught myself saying things like "Our nurse allowed me to get on all fours to push even with my epidural". Once I realized I was saying things like that I stopped -I WANTED to get on my hands and knees so I just kept asking until she helped me do it, it didn't make any sense to me that I describe it like I needed permission to do what felt natural!

    Another thing I realized (actually after watching a documentary about a home birth with a transfer in it) how very little "informed consent" we were actually given. I was extremely informed through my own research before agreeing to all the procedures we consented to and we definitely called the shots, but here's the thing. No one told me that merely consenting to an induction doubled my risk of a section. No one told me ANY of the risks of the epidural except for the risk of a spinal fluid leak. No one talked about the statistics related to infections or abcesses related to my csection. I also ended up having to have general anethesia, and no one even discussed the risks with that (although I was pretty loopy at that point anyway). If I hadn't learned so much on my own I never would have known about any of those things. How in the world is that ethical?

    I wish more care was taken to help people understand the ramifications of the choices they are making, since after all that is what doctors go to medical school for! Thank goodness I spent so much time learning before pregnancy and birth, because looking back on it, my husband and I (and our doula) did a fantastic job advocating for our family, especially compared with some of the other stories I hear about hospital births.

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  2. So when, exactly, are you going to include informing women of the actual dangers of homebirth? Of the tragedy of not having assistance available, of the lack of education inherent in a "CPM" license? When is MANA going to release it's statistics proving homebirth is safe---oh, that's right, they can't, because it isn't.

    Informed consent goes both ways.

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  3. Okay, so homebirth isn't safe so we should all give birth in a hospital where babies and mothers never die. Oh wait...
    There are risks involved with birthing at home, and there are risks involved with birthing in the hospital. There is risk involved with birthing period. Life is full of risks!
    I think the vast majority of mothers giving birth at home already know what the risks are. A very, very few may not have fully thought it through. But this bickering over what is "safe" is just ludicrous. Define "safe".

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