I kinda hate that term, actually. It implies that there’s someone in power and someone in a more subservient role. It doesn’t have to be that way. But so often, it is…especially in the world of health care. Apparently, there are standards and protocols among various medical associations for what informed consent looks like, but I have to say, as a doula who’s attended almost 30 births, I’ve seen some pretty wild variation in what patients are told or not told before “consenting” to various medical procedures.
It’s even worse when the patient does not speak English as their first language.
Let’s start with the ACOG description of informed consent, found on their website:
Although informed consent has both legal and ethical implications, its purpose is primarily ethical in nature. As an ethical doctrine, informed consent is a process of communication whereby a patient is enabled to make an informed and voluntary decision about accepting or declining medical care. There are important legal aspects to informed consent that should not be overlooked. It is critical for physicians to document the contents of this conversation as part of the permanent medical record. A signed consent document, however, does not ensure that the process of informed consent has taken place in a meaningful way or that the ethical requirements have been met (ACOG Committee on Ethics, August 2009).
I’ve been hearing some folks use the term “informed choice” rather than informed consent. A brief internet search yielded this short article by Dr. George Spaeth, an ophthalmologist in Philadelphia, making the case for a shift to using the principles of “informed choice” instead:
In healthcare, distinguishing between “choice” and “consent” is important, as choice encourages autonomy while consent discourages it. Fundamental to proper patient care is enhancing a patient’s autonomy and helping the patient take charge of his own life, especially as it relates to health. This is essential not only for philosophical and legal reasons, but also because self-care is pivotal to achieving a consistent state of health, which is, of course, the ultimate goal of therapy. To speak of “informed choice” rather than “informed consent” would help eliminate paternalism in medicine without detracting from healthcare professionals’ intent to be helpful or decrease in any way their ability to be beneficial. To speak of “informed choice” rather than “informed consent” will emphasize the importance of patient autonomy in making proactive health care decisions.
Case in point:
I was called in to a birth as a volunteer doula earlier this week. This mama didn’t speak much English at all, nor did her family members in the room with her. When I got there, the charge nurse told me she was 5 cm and baby was OP. The mama started asking about an epidural once I got settled in, so the nurse got a translator over the phone and had the anesthesiologist come in to do the informed consent.
What happened next would be laughable, really, if it weren’t so freaking sad. His speech went like this:
“I’ll insert a catheter into your back and it will administer medicine to make the pain go away. It won’t harm you or the baby and it will wear off about an hour after birth.”
Yup. That’s it. Now, granted, I’ve seen pretty lousy consent processes even in situations when the patient does speak English as a first language…but this one floored me.
There was nothing at all about the process, the types of pain medication, or the possible side effects, nor the inability to move freely and likelihood of needing a urinary catheter (until after she asked). That’s right: nothing about risk of spinal headaches, itchiness, or the whole damn thing just not working, or only working on one side.
This mama was a bit smarter than that and started asking lots of questions. After a particularly rough contraction, she agreed to have the epidural (after changing her mind twice, much to the annoyance of the anesthesiologist). He left to prep, and the midwife, who had just attended another birth, came in to do a cervical check. The mama had made some progress, but this is not what the midwife emphasized.
Instead, with the translator still on the phone, the midwife very calmly looked straight into the her eyes, smiled, and said,
“You know, you are making good progress. I know this labor is hard, but I also know you can do it. I think that if you get in the tub right now, you’ll feel a lot better. It’s safe for you and the baby. You are working so hard, and I know you can do this without the epidural if you don’t want to have one.”
The mama relaxed, closed her eyes and nodded, leaning back into my hands that were massaging her back. After that, there was no turning back. She got in the tub. Maybe 20 minutes later, she turned to me, eyes wide, and said, “I can feel the baby’s head!” 20 intense minutes after that, with the nurses scurrying the whole time to get the mama out of the tub and into the bed (despite the midwife’s assurances that an upright birth would have been just fine), a beautiful, healthy baby was born.
So, total time from when she first said she wanted an epidural to time of birth was less than an hour. All she really needed as a calm, confident midwife who believed in her inherent strength to birth this baby. I cringe to think what might have happened if the had walked in 15 minutes later. This mama wouldn’t have been consenting in an informed, empowered way to anything but the sparse information bordering on opinion that the anesthesiologist was giving her.
As ACOG Committee on Ethics notes:
It [informed consent] is a means not only to the responsible participation by patients in their own medical care but also to a relationship between physician (or any medical caregiver) and patient. From this perspective, it is possible to see the contradictions inherent in an approach to informed consent that would, for example:
- Lead a physician (or anyone else) to say of a patient, “I consented the patient”
- Assume that informed consent is achieved simply by the signing of a document
- Consider informed consent primarily as a safeguard for physicians against professional liability
I was so deeply disappointed in the treatment this mama received as a non-native English speaker…and it has me all fired up and thinking about how I would have done things differently had I been in the anesthesiologist’s shoes.
A few thoughts:
- For starters, I would not have spoken to her during contractions and would have asked the translator to pause as well. Who the heck thinks that you can meaningfully “consent” to anything in the middle of a whopping contraction that’s making you want pain meds in the first place?!
- I would have clearly and simply described the process of getting an epidural and its intended affects (numbing of sensation), as well as the type of medication used.
- I would have outlined the top potential risks/complications and their rates.
- I would have described the other interventions/consequences that come with an epidural: continuous monitoring, blood pressure checks, immobility, urinary catheters.
- And I would have described alternative comfort measures, both pharmacological and otherwise.
- And yes, I would have done all these things, even though with a translator, it may have taken longer.
I’m curious to hear other folks’ experiences with informed consent for those who do not speak English as a first language. Whether as a doula or midwife, how do you see your role? Does anything change in your need or desire to advocate for the patient?