Why You Need to be Informed About Informed Consent

*Thanks to Chayene Rafaela from Unsplash for awesome mama photo!*

Informed consent is legally and morally mandated throughout ALL health care in the United States. This important process means that your health care provider has been strictly taught to educate you as their patient about the risks, benefits, and alternatives of a given procedure, treatment or intervention. And that you have the protection to freely decide what course of action, or if no action, is in your best interest.

This process is essential to you for many reasons. Ultimately, it helps you to have better health care, in addition to a better health care experience. Since you alone have the complete picture of your physical history and life experience, combining this insight with any health care recommendations brings the most nuanced (and therefore most effective) care.

Informed consent also protects your body autonomy, which is your control over what happens to your body. When you have been provided with the broadest range of information about your medical options, it ensures that the health care decisions you make are aligned as much as possible with your values and priorities, in both the short and long term. This also improves your health care experience, and hopefully brings greater peace about the outcome, because ideally you have the opportunity to choose your treatment through information and not coercion.

“Under the law, your authority over your body is absolute except if you’re unconscious or incoherent. ”

— Marsden Wagner, M.D., M.S.

One poignant example of how tricky this can be happened to me personally when my father was living with end-stage prostate cancer. I was called by his health care team where he was living in another state. Because he was divorced and w/o a spouse, apparently as his oldest child I was automatically being included in his health care decision-making at this stage. They were seeking my permission to place drains in his kidneys to relieve some pressure, and I was told that this would protect his kidneys from further damage. I asked lots of questions as I teach, including my concern for the introduction for a direct route for potential infection, since these drains exited through ports on the surface of his back and would need meticulous daily cleaning. The doctor seemed respectful and forthcoming, so with my dad’s approval, I agreed. It was only a week later when I asked about when they were to be removed that I was told that they were never meant to removed, they would remain there until he died (which could be months)! I was shocked and felt mislead. Also chagrined! If I myself am a health care professional and yet still missed such an obvious detail, no wonder this is challenging to the everyday consumer!

In the case of obstetrical health care, mothers also have the legal right to choose or not choose care, even if it is perceived to be necessary for the well-being or life of her fetus or herself. Although there may be some variation on a state-by-state basis, this is explicitly stated in the American College of Obstetricians and Gynecologists (ACOG’s) paper on Informed Consent.

Yet in spite of ACOG’s clear definition of autonomous informed consent for mothers and their babies, it is still alarmingly absent from maternity care, especially in the hospital setting.

It’s not that there’s a “right choice.” It’s that women have a right to be informed about their choices, and to choose without psychological repercussions inflicted by the staff or care providers. For instance, in the case of labor induction, along with it’s potential benefits, informed consent by definition is to provide:

Personalize considerations and thoughtful dialogue,
Being informed of the documented risks of initiating labor chemically,
Being informed of the potential risks of not permitting labor to begin normally.

Unfortunately though, I have never even heard of this full picture being carefully volunteered to a pregnant mother by her obstetrician.

***When a woman feels bullied,***

threatened, or harassed into submitting to the medical induction of labor to birth her baby, *informed consent is absent* from her care.
Which is *illegal.*
*And also represents a downgrade in the quality of care and decision-making available to her.*

Asking questions is your right, and your responsibility, to ensure that you have sufficient information to make health decisions within the context of your values and priorities. Inherent in the the informed decision process is that the information being conveyed is “in a manner that the patient is able to fully understand”; this means that no one should be trying to talk to a laboring mother during a contraction!

The kind of questions that can help make informed decisions might include:

Why is this procedure/test/action being suggested at this time?
What is it, and how is it done? Who is it done by? Is my partner/spouse/suppport person ‘allowed’? (And if not, why not?)
What is the expected benefit? How likely is this benefit?
How long will it take…? To get results, take effect, wear off? If it doesn’t work, then what?
What are the potential risks, side effects or unintended consequences of your recommendation? How often do they happen?
What if we wait and see instead?
If we don’t do it now, how could it change our options later?
What are other options, even if they are not your recommendation?
Tell me about the bigger picture - what don’t I know to ask?

Pregnant moms, those who love her, and birth workers could print out ACOG’s “Recommendations & Conclusions” (link below) to include with mom’s birth plan, or just to have handy and encouraging. Through straight-forward questions, OB’s (and midwives too if necessary), can be reminded of their ethical and legal obligations to provide informed consent **without attitude or bullying** for all medical recommendations. Keep in mind that you are dealing with real people most likely just trying to do their job; neutral even tones are usually likely to be more effective and build collaborative relationships than starting with a challenging or aggressive approach.

Here is some highlights of American College of Obstetricians and Gynecologists (ACOG’s) recommendations on informed consent. Their full published statement is found here.

The goal of the informed consent process includes:

Providing patients with information that is necessary and relevant to their decision-making (including the risks and benefits of accepting or declining recommended treatment) and to assist patients in identifying the best course of action for their medical care.

Share decision making as a patient-centered, individualized approach
Meeting the ethical obligations of informed consent requires that an obstetrician–gynecologist gives the patient adequate, accurate, and understandable information and requires that the patient has the ability to understand and reason through this information and is free to ask questions and to make an intentional and voluntary choice, which may include refusal of care or treatment.
An adult patient with decision-making capacity has the right to refuse treatment, including during pregnancy, labor, and delivery and when treatment is necessary for the patient's health or survival, that of the patient's fetus, or both.
The highest ethical standard for adequacy of clinical information requires that the amount and complexity of information be tailored to the desires of the individual patient and to the patient's ability to understand this information.