Sunday, June 12, 2011

What is autonomy?

My earlier question asking if autonomy is just for the natural birth crowd got sidetracked into arguments about the safety of home birth. Yawn. (Is anyone else ready to move on from these worn-out debates?)

Anyway, let's talk about what autonomy is and what it means in a healthcare context. From Wikipedia (emphasis mine):
Autonomy (Ancient Greek: αὐτονομία autonomia from αὐτόνομος autonomos from αὐτο- auto- "self" + νόμος nomos, "law" "one who gives oneself their own law") is a concept found in moral, political, and bioethical philosophy. Within these contexts, it refers to the capacity of a rational individual to make an informed, un-coerced decision. In moral and political philosophy, autonomy is often used as the basis for determining moral responsibility for one's actions. One of the best known philosophical theories of autonomy was developed by Kant. In medicine, respect for the autonomy of patients is an important goal as deontology, though it can conflict with a competing ethical principle, namely beneficence. Autonomy is also used to refer to the self-government of the people.
Let's take a look at the Patients' Bill of Rights adopted by the Association of American Physicians and Surgeons (emphasis mine):
All patients should be guaranteed the following freedoms:
To seek consultation with the physician(s) of their choice;
To contract with their physician(s) on mutually agreeable terms;
To be treated confidentially, with access to their records limited to those involved in their care or designated by the patient;
To use their own resources to purchase the care of their choice;
To refuse medical treatment even if it is recommended by their physician(s);
To be informed about their medical condition, the risks and benefits of treatment and appropriate alternatives;

To refuse third-party interference in their medical care, and to be confident that their actions in seeking or declining medical care will not result in third-party-imposed penalties for patients or physicians;
To receive full disclosure of their insurance plan in plain language...

In a healthcare context, autonomy means being informed about the full range of risks, benefits, and alternatives of a proposed treatment (informed consent), and having the ability to accept or reject the treatment (right to refuse). Or for you math geeks:
autonomy = informed consent + right to refuse
While patients have the right to refuse treatment, they do not necessarily have the right to demand medically unnecessary treatments. For example, if your leg is injured and your physician recommends amputation, you have the right to refuse. However, you do not have the right to demand an amputation of a healthy limb. 

In maternity care, the right to refuse and inability to demand are not always consistently applied. Women are often not allowed to refuse certain treatments, such as repeat cesarean section or IV therapy. On the other hand, many women are able to demand medically unnecessary treatments, such as elective primary cesarean or elective induction. This inconsistent application of autonomy and patients' rights has emerged from cultural beliefs in the inherent risk of labor and inherent safety of medical intervention and from concerns about litigation and liability. 

So I ask again: is the desire for autonomy really a frivolous, selfish concern at best, and a potentially dangerous doctrine at worst, as implied by more than one commenter? 


  1. To answer your last question - No! It's dangerous to allow our autonomy to be ignored or worst taken away. I find it interesting that this issue is by far more prevalent, more debated, and questioned in the Maternity health care field. If you had cancer and was given only one option for treatment by a health care provider, it would be wise and by many advised to seek a second opinion, weigh choices based your condition, background and wishes, however in the Maternity health care field we continually see a one-size-fits-all type of "care" that can be both counterproductive to down right dangerous for some women. Autonomy is the opposite of frivolous to me. It's down right necessary.

  2. Of course, my bias is that I am firmly in the homebirth, extended breastfeeding, homeschooling, raw-milk drinking, herb-growing, etc "camp," so I cherish my liberties. Autonomy is a kind of liberty - the liberty to be informed, make choices and be respected for them. Autonomy is vital.

    It is a liberty, though, meaning that depending on the political/administrative environment, it can be granted or revoked.

    Of course autonomy matters to those who take the mainstream route. They may not think of it that way, though, because many folks trust that their doctors' choices *are* the best choices, by virtue of their "training," so they somehow put trust in care provider above the right to choose.

    Just like any other democratic environment, though, when dissenting ideas come against each other, but are worked through with mutual respect, a good compromise can be reached, and hopefully both sides come to understand each other better. Without mutual respect, you get all-hell.

    When one "class" thinks they can tell another "class" what is best/what to do, there will be dissidence. As there should be. Checks and balances exist because no "expert" can be trusted to not let power get to them at some point. Does that make me a radical? ;)

  3. Autonomy is an essential part of being human.

    The alternative is to accept that we can, at any time, be told what to do by someone else, and then *obligated to obey them*. Not cool. Where's the accountability? Where's the growth? And what mortal (or group thereof) will we somehow imbue with omniscience and then saddle with the responsibility for making all our decisions in our best interest?

    The implications of such an alternative to autonomy are staggering. There go *any* arguments for living wills, for example, which are kind of a hot topic right now. "Sorry - we decided you aren't allowed to make that decision, since your workplace claims they really can't replace you. Consider yourself saved."

    Or, really, there goes any necessity for informed consent, EVER. "Just so you know, given your situation/genetics/whatever, we decided that this was for your own good, so we sterilized you during your appendectomy. Consider yourself liberated."

    We are human, and that entails not only accountability for our choices, but also the natural right to *make* those choices - even ones that might be less than stellar. They might be wrong for someone else, and they might even be wrong for us. But who's more accountable for us, than ourselves?

    We do the best we can, with the information we have. That's why INFORMED consent is so vital.

    Informed consent, followed by the exercise of our natural right to choose and acceptance of our natural right to be accountable for that choice, is the only acceptable approach, for me.

    Anything less is sub-human.

    And yes, this issue is personal to me: I felt completely robbed of my autonomy in my first birth, and I'm still healing from the psychological degradation I couldn't even put my finger on at that time. I may have made the exact same choice, given all the information, but being treated like livestock who must be managed (aka: manipulated) "for my own good, and/or Baby's" is an approach unworthy of human interaction.

  4. I've never left a comment before, but this is an issue that is near-and-dear to my heart. I'm a hospital chaplain, and I see a lot of antepartum patients, NICU patients, and (not usually related, though occasionally related) palliative care and/or hospice patients. I agree absolutely with Patrice when she said that it would be unheard-of in our medical system for a patient with cancer to be offered only one avenue of possible treatment. The exception to the rule, of course, is if a patient is deemed "incompetent," as in the case of advanced dementia, or extreme delusion. My fear is that women in labor are often treated as incompetent as a default. This means that claiming autonomy for a woman in labor requires more energy and puts her in an antagonistic relationship with those who are assigned with caring for her. It is no wonder that we hear so many stories about women who have been traumatized by their birth experiences in hospitals.

    I actually think that autonomy is about responsibility. The responsibility for medical decisions (except in the case of incompetence) should lie with the patient. However, in the case of a laboring woman, I think that the old stereotype of "hysteria" has lingered somewhat, and many times, she is assumed incompetent.

    I want to add one last thought, and then the rambling will cease. I do not think that this observation applies to ALL doctors or ALL hospitals. I want very much to avoid the gross generalization of individuals. However, I do think that the medical system in the US tends to steam-roll over both autonomy and responsibility in laboring women.

  5. when society works out the rights of the woman, then we can move forward on the issue of autonomy but it still struggles with 'who owns' the baby hence autonomy gets subverted for that woman in that instance. Love the comments from the chaplain above.Thanks for commenting!

  6. Doctors are human. Midwives are human. Moms are human. We all make mistakes. Of these three, the only one who has to go home with the results of the mistakes and deal with them for the rest of her life is Mom. The only one who has all the information (social, emotional, historical and, hopefully, medical) is Mom. It is only resonable for her to be the final authority, to make the final decision.

    There is no other senerio where one person is forced to have medical procedures for the benifit of someone else. My hubby would never be forced (by CPS or anyone else) to donate a kidney should our 16yo need one (though of course he would volunteer). Yet for some reason it is considered ok to force a woman to have medical procedures for her baby. Why is this different? Is a pregnant woman less of a human than anyone else or is a baby more?

    If a woman chooses to just do what her doctor wants, that should be her decision. But if she disagrees and wants a different treatment, that should also be her decision. She should be given ALL the information and ALL the options so she can make whatever choice she can live with.

    If we remove this right from laboring moms, it will be removed form everyone else eventually. Does anyone really want to live in that kind of world? One where someone else makes all your medical decisions?

  7. I think that the desire for autonomy is not frivolous at all. Whether you are in a hospital, at home, or anywhere else giving birth, you should have the right to be the final word on your care, and your child's. In fact...lets not even call it a right. That makes it sound like it could be questioned or limited. There should be no question that we WILL make the decisions for our bodies and our babies. It is not a right, it is common sense.

  8. I'm a doula and I could talk a lot about what I've seen and how I've experienced autonomy both with myself and clients.
    However, I'd like to post this article instead. I'm sure most of you have seen this by now but I think it speaks volumes on the issue.

  9. I desperately wanted a quiet birth with midwives at an independent birth center, but had a very complicated delivery that ended in Cesarean. Thanks to a great midwife and OB, who respected me every step of the way, my daughter's birth was just as magical as I had hoped. I felt honored and respected, and it allowed me to weep with joy when I first heard her voice, even though things had not gone as I originally planned. Autonomy is just as important, if not more important, for mothers who need medical support.

  10. Whilst the desire and pursuit of autonomy (in reference to maternity care/birth/mothering) is by no means a bad thing, I think people fail to realise where they are most likely to have success in achieving it.

    Antenatal care and childbirth are very unique times in a woman's life because an optimally healthy woman, who has a naturally conceived pregnancy is a in what I call a "wellness state". In general, where we have the most power or autonomy over our lives is in deciding what to do maintain our existing good health. Once "problems" arise it can get very difficult to be able to research every avenue especially if you need immediate treatment or you are not able to afford to implement the changes needed. Sadly you do not get a birth do-over, so you do not have the chance to reflect or even see the full picture until afterwards.

    I am not sure if it will ever happen but health (as opposed to our current medical) care need to be taught to young girls as early as possible. This starts with mothers passing down their wisdom. When I hear about the information given in childbirth classes, even the best information is at minimum months but at maximum years too late for the pregnant woman and gestating baby to see the affects.

    I guess to simply put during pregnancy I believe you have more autonomy in the prevention choices than in those of the cure. Women have a lot of power - they just need to know how and in this case, more importantly, when, to use it.

    P.s. I too am OVER the homebirth safety debate - I mean. Seriously. Over. It!

  11. No. In the end we are (or should be) accountable for our own actions.

    When the right to informed consent is taken away from women the burden falls on the medical establishment. Then they have the audacity to balk when they get sued by people seeking answers.

    If pregnant and laboring women weren't handled with "kiddie gloves" and were active participants in the decision making process, I doubt we'd have the "litigation crisis" that currently exists (I think that's why so few midwives get sued.)

  12. What astounds me is that anyone would think that it is terribly onerous--or even onerous *at all*--to satisfy the conditions for respecting another person's autonomy.

    In the more contemporary philosophical literature on personal autonomy (which is not by any means uniform--but what in academia is?), one "autonomy condition" that often gets mentioned is that one must be able to understand and appreciate the world for what it is. And not surprisingly, this involves not only having access to information that is relevant to their decision-making but also being free from coercion. What one often sees from many maternity care providers--and to be clear, this includes both doctors and midwives--is unabashed coercive behavior: haranguing, misleading, misinforming, belittling, etc. And to my mind, this unquestionably undermines a woman's personal autonomy.

    What's more, I think personal autonomy is worth caring enough about that this SHOULD concern each and every one of us, no matter where we envision ourselves on the spectrum of birth philosophies.

    (*Disclaimer: much of my academic work is on personal autonomy, specifically relational autonomy.)


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