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!"

Come to BirthTalk this Thursday!

I will be giving a talk this Thursday evening in Moncton, NB as part of the BirthTalk series hosted by Natalie Arsenault. My presentation is called "Childbirth activism: where we have come from and where we are going?" I will review the various childbirth movements of the 20th and 21st century and share my thoughts on the future of birth activism.

For more details, please contact Natalie. I hope to see you there!

Now here's the back story of how I met Natalie...I was at the downtown Moncton Farmer's Market about 10 days ago and saw a stall with beautiful batik and handwoven cotton slings. Aha! I thought. I have got to talk to her! She makes slings! Yes, I am kind of dorky that way. So I headed over with Inga (in a sling of course) and said hello. We chatted for a while about slings. Then it turned to birth stuff, at which point she gave me her card and asked if I'd be around for her monthly meetings, called BirthTalk. I went to the gathering last week and enjoyed myself quite a bit. She invited me to give a presentation this week. I don't have access to most of my materials, so it will be informal but still interesting and thought-provoking.

Open forum for the Home Birth Summit

Several blog readers expressed concerns or comments about the upcoming Home Birth Consensus Summit, to be held this fall. This post is an open forum for your comments/concerns/questions. I will make sure your input reaches Geradine Simkins.

If you were able to attend the summit, what would you say? What are the biggest obstacles you have experienced to home birth in general? In your own community? What would make it safer, more accessible, etc?

Speak up!

Baby gear, circa early-to-mid-1800s

While we were visiting the Keillor House in Dorchester, NB, we saw several fascinating baby items. We always talk about life being simpler "back then." But even 150-200 years ago, there was plenty of baby gear for parents to accumulate.

When I was little, my parents used a Johnny Jump-Up. I have memories of kicking my baby brother while he was sitting in it. These apparently aren't new. Here's a "Jolly Jumper" from the 19th century. It is suspended from the ceiling by a rope.

I loved this multi-function chair. Now it's a high chair...

Now it's a stroller!

Finally, here's a little child-sized potty (missing the bowl underneath)

When they need it, where they want it

A recent press release from the SOGC (Society of Obstetricians & Gynaecologists of Canada) shows support for women's autonomy in childbearing. In honor of the International Day of the Midwife, the SOGC released this document (PDF). Dr. Lalonde upholds pregnant women's autonomy in where and how to give birth:

“The SOGC acknowledges that it is the mother’s decision to decide where she would like to give birth,” stated Dr. André Lalonde, executive vice-president of the SOGC. “Most babies are born without serious complications. As ob/gyns, our specialized training allows us to address the unique requirements of high-risk situations. What matters is that all professions acknowledge each other’s competencies and work together to provide mother and baby with the quality care they need, when they need it, where they want it.”

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? 

Home Birth Summit

I've been hearing buzz about a Home Birth Summit coming some time this fall. I recently received a message from Geradine Simkins via a midwifery list I belong to with more details about the summit participants. This might assuage some concerns, such as the ones articulated at The Trial of Labor, about who is attending and how they were chosen.

Below is the letter from Geradine Simkins, president of MANA.

~~~~~

Dear Friends,

I’d like to address some of the comments about the upcoming Homebirth Summit. First of all, this is an idea that has been brewing for at least two years, some might say for two decades. No one really “owns” the idea of putting together a gathering of multiple stakeholders to have a frank and productive conversation about how to best support and care for women who chose homebirth. But after lots of conversation—the decisive one being at the ACNM Homebirth Section meeting two years ago—we decided to pursue this “project” in earnest.

Many of you may be familiar with the type of process we chose. It is not unlike what Childbirth Connection chose to use when they initiated the process for creating their seminal work, “Transforming Maternity Care: A Blueprint for Action”. They convened a Vision Team of experts in the fields of maternity care and health systems, worked in specific stakeholder groups, and developed concrete solutions to some of the most pressing issues facing the U.S. maternity care system. The result is a group of actionable strategies to improve maternity care quality and value.

It was not a conference; it was an invited work team. The Homebirth Summit will also not be a conference. Here are some details about the process and the participants:

• In order to get representatives to the table who are in any way involved with homebirth, 72-80 delegates have been identified to be evenly balanced across 9 stakeholder groups (listed below).
• The invitation selection process has been an iterative process with many rounds of vetting, internally and externally.
• Short lists were created by subcommittees chaired by those who knew those stakeholders.
• Each subcommittee of the MULTIDISCIPLINARY planning group went through a detailed vetting and weighing process and considered the balance of perspectives, ethnicities, gender, age, geography, and other factors.
• After serious consideration, we hired consultants from Future Search because of their success with consensus building among groups with very disparate (and often conflicting) ideas, values and principles.
• We are using Future Search Methodology, which prioritizes including participants who had authority, information, expertise, need, and resources.
• We also prioritized those who were likely to respect the process by fully engaging in the Future Search methodology and open-minded dialogue.
• The stakeholders are NOT ANY ORGANIZATION but rather are individuals who are defined as belonging in these nine stakeholder groups:
• Consumers (from a variety of perspectives)
• Consumer advocates (doulas, childbirth educators, childbirth and women’s healthcare activist)
• Home Birth midwives (CPM, CNM, LM, Amish, traditional, whatever)
• Obstetricians and OB family practice
• Collaborating MCH providers (nursing: L&D, neonatal, pediatrics; CNMs who provide backup)
• Health insurers and liability insurers
• Health policy, legislators, legal, ethics
• Research and education: Public Health, epidemiology
• Health models, systems, administrators

In this way, the WHOLE SYSTEM is at the table. Otherwise, we will not be able to seriously come to consensus.

The point is not to debate the “right or wrongness” of homebirth, or even the safety. The goal is to establish what the whole system can do to support those who choose homebirth, and provide the care, safety net, consultation, collaboration and referral necessary to make homebirth the safest and most positive experience for all involved—moms, babies, families, communities, health care workers, hospital personnel, administrators, payors, and so on.

We have been meticulous and intentional about our process. Nonetheless, not everyone will agree with our process. With only 72-81 spots to make this a functional process, not everyone will be happy with those that are selected, and specifically, if they were not selected.

I would ask you to consider that we are working very hard and with the firm intention of making the process, the event and the outcome as optimal for mothers and infants as possible, and for the benefit of midwives serving homebirth clients.

In solidarity,
Geradine

--
Geradine Simkins, CNM, MSN
President & Interim Executive Director
Midwives Alliance of North America
president@mana.org
executivedirector@mana.org
geradines@gmail.com
275 Cemetery Rd.
Maple City, MI 49664
231.228.5857

Is autonomy just for the natural birth crowd?

In response to the post about autonomy, beneficence, and non-maleficance, someone left this comment:

And, you know, if random women didn't declare their consent invalid after something *did* go wrong, docs just might be more willing to go along with your riskier ideas. One of the more annoying parts of your "trust birth" idiocy is that you want to refuse all the stuff that might let you know something is going wrong, show up at the hospital with you and the baby in distress, and then bitch blue murder about the evil docs who couldn't pull one more rabbit out of the hat and save your ass, your baby and your uterus.

Does it not cross your mind that docs don't like losing babies, and don't like being sued---because in order to be sued, there has to be a bad outcome? And a bad outcome is a dead or injured baby? Midwives have no insurance, little training and less accountability.

There are gross generalizations, false accusations, and other logical fallacies in this comment. Leaving those aside for a moment, this comment implies that only those of a certain ideological persuasion care about autonomy, and that the desire for autonomy is essentially selfish and misguided.

So what do you think? Is autonomy just for homebirthers (or those who use midwives or want a "natural" birth)? Do more "mainstream" women really not care about, or not benefit from, autonomy in their maternity care?

I'm still here, eh?

We're busy getting to know New Brunswick, so I haven't been on the computer much. Here are a few pictures...

For those of you wanting to see how to fit 3 carseats in the back of a VW Golf.

We live right next to a cemetery (complete with Eric's ancestors!), so it's turned into a favorite place to go for walks.

The kids shriek "spit bubbles! spit bubbles!" whenever Inga does this

I can't stop kissing her chubby cheeks

Our first night in Moncton we made fiddlehead ferns (blanch for 1 minute in boiling water, then sautee in olive oil) and salmon en papillotte (made with what we had on hand: caramelized onions, mushrooms, carrots & sour cream). Zari keeps asking for more ferns.

Today we ate lobster from the Bay of Fundy and the kids ran around the house playing with the empty claws. I've never seen such huge lobsters before. Several of the live ones were close to 10 pounds! But the woman at the shop said, "We don't say they're big until they weigh at least 15 pounds." The rest of the lobster will turn into this pasta recipe tomorrow. Mmmmm.

1,511 miles, 3 children, and 1 small car

We made the 1,500 mile (2,432 km) drive out to New Brunswick in our VW Golf. (Yes, you can fit 3 carseats in the back of a Golf, to the amazement of my SUV- and minivan-driving friends!) We broke the drive into three days: 6 hours to Eric's sister, 15 hours, and 6 hours. The second day was rough. It's hard for little kids to sit still all day. At the end of the second day, we erected a cardboard barrier between Dio and Inga to protect her from kicks and pinches.

A portable DVD player borrowed from Eric's sister helped the last two days go more smoothly. Eric was really opposed to the DVD player. "I don't want our kids to be plugged in," he said. But I insisted we at least bring it with us and use it when/if the kids became too restless. We put on movies about half the time, taking breaks until the kids started become very irritable and bored (meaning they started to hurt Inga, poor thing).

The second night, we stayed at a hotel with an indoor pool and hot tub. We swam in the morning until the kids got all their energy out. Definitely a must-do on the way home.

When we weren't watching movies, we ate snacks, sang songs, played "I spy", told stories, and listened to NPR. And somehow we survived the drive.

Our Golf performed beautifully, getting close to 50 mpg. I love my diesel VW!

Now if the weather would just warm up...it's been unseasonably cold and I didn't pack enough warm clothing.

3 month pictures

We finished day 1 of driving out to New Brunswick. 2 more days to go. We are officially crazy to do this long of a road trip. Anyone live in or near Moncton? We'll be there for the month of June.

Meanwhile, some "now & then" pictures of Inga, who is 3 months old today:

2 days old

3 months old

1 week old

3 months old

2 weeks old

3 months old