The importance of consent: rant, rinse, repeat...

I have been ranting about consent for decades, and I make no apology for it.

In the few days before first writing this blog post, I had conversations with three different, unrelated and very caring midwives.

All were caring for bright, informed women who were experiencing difficulties getting the care they wanted.

And in each case the problem was the same.

The women had been subjected to a risk assessment or screening test, carried out without their knowledge or consent. And these tests or assessments had unwanted and unwelcome implications.

I suspect that most midwives and birth workers can easily imagine the scenarios, but let me explain for anyone who is newer to the area.

Beware of stepping on the scales…

One woman had fallen foul of the criteria for entry to the local midwifery-led unit (MLU).

She innocently stepped on the scales at her GP’s office without being told what the implications of this would be. A few minutes later, she was told that she wasn’t allowed to give birth at the local midwifery-led unit. Her only option was to go to the hospital, which she didn’t want.

(Actually, she had a home birth with an independent midwife, but that’s not an option for everyone.)

The difference between her BMI and the BMI of someone who would be allowed (and, yes, what a horrid word that is in this context) to give birth in the MLU is so marginal that, if it wasn’t so tragic, it would be laughable.

The cut off point was a BMI of 31, and her BMI was 31.

Unconsented VTE screening

Another woman – and she is one of MANY – was advised that she now (apparently) needs to have interventions or monitoring during labour and birth. Oh, and she also needs to be in an environment that would not necessarily be her choice (although she hadn’t yet made up her mind).

This is because, also without her knowledge or consent, a risk assessment was undertaken. In this case, the assessment was to see if she was at risk from venous thromboembolism.

The issue with this type of risk assessment is that it is done just from risk factors that can be found in someone’s medical records. In this case, the women didn’t even need to be present, or to consent to any measurements being taken at the point of care. The information was already available to her caregivers, who were compelled to fill out the form by local guidelines. Consent wasn’t needed, and yet the results impacted her experience.

Yes, VTE is a big problem, and I understand why it is the focus of public health initiatives. But the lack of consent combined with the implications of this scoring system makes this kind of risk assessment particularly problematic.

Group B Strep

The third woman’s choices – and, again, this is just one woman’s story and there are a million more – were limited because group B strep was found in a urine sample that she gave during a midwife appointment.

Again, consent was questionable.

That’s because the lab finding was the result of the woman’s urine being screened without her being informed that GBS was one of the things that it was being tested for. She also wasn’t informed that, if GBS was found, her options would be restricted, she would be put under immense pressure to have antibiotics and a big label would be put on her medical notes which would, in her own words, “ruin her experience.”

She “…thought the sample was being tested for protein and glucose like at other antenatal visits”.

The woman was adamant, having read widely on this topic, that she would not have consented to testing for GBS had she been asked.

But she wasn’t asked, or told, until it was too late.

The risks of risk assessment

I distinctly remember one of the very first chapters of the very thick Effective Care in Pregnancy and Childbirth tomes that had just been published as I was beginning midwifery.

It was about systems of risk assessment (Alexander and Kierse 1989). Reading this chapter was a real eye-opener for me. It helped me understand that there was little evidence underpinning much of what I was being taught to do on a daily basis. Even more importantly, I learned that the act of assessing risk itself was an intervention which (oh, the irony) carried risks.

There can, I know, be fine lines between different kinds of risk assessment. There’s the informal kind of risk assessment that is an integral and inseparable part of the role of a birth attendant. (Otherwise why are we there; we don’t have the monopoly on making a good cup of tea.) We all do risk assessment all the time, so I’m not saying it’s a clear cut thing.

But screening tests, as I’ve described, tend to be clear cut. These help determine whether someone is deemed to be at risk based on the outcome of a test. The answer is often numerical and, while the line between normal and not normal (or low risk and high risk) is often arbitrary, there is at least a clear process which someone can decide to consent to or not.

And then there is risk scoring (like, for example, in the VTE example above), which is sometimes done without the person even being in the room.

The fact that the last two examples sit within the wider context of a culture that seems incessantly and sometimes obsessively focused on the promotion and prevention of risk further compounds the issue.

What’s the answer?

The answer is simple.

I just want people to ask women for their permission before the concept of risk is used to delineate and dictate what a woman may and may not do with her body.

Especially when so few of the things that done in the name of preventing or reducing risk are based on sound evidence that they really make a difference.

If only risk assessment did come with a risk warning…

If you’d like more info on this, or to better understand the kinds of tests and interventions that you will experience when pregnant, and find out what questions you might want to consider when deciding whether or not they are right for you, take a look at my book:

What’s Right For Me?

Alexander S, Keirse MJNC (1989). Formal risk scoring during pregnancy. In: Chalmers I, Enkin M, Kierse MJNC (1989). Effective care in pregnancy and childbirth. Oxford: Oxford University Press: 345-365.