Shall I walk under or around the ladder? The perception of 'risk' & informed decision-making
Most pregnant or labouring women are not ‘high risk’, even if they’ve been told they are. Not when you think about what ‘high’ actually means. Some women aren’t ‘low risk’ either. For many the reality lies somewhere between these two extremes. In my view, the high/low labels are often unhelpful and potentially dichotomising, rigid, illogical and discriminatory, not to mention inappropriate for many. Some care providers might argue that this classifying of pregnant women as being ‘low’ or ‘high’ risk is out-dated and that they no longer categorise women this way. However, if that’s how women are referring to themselves, then in my view the labelling still exists whether explicitly or implicitly.
So I’m writing about what is commonly called risk, what that means, its implications and what you might do about it when making decisions that feel right for you, your pregnancy, baby, labour and birth.
NICE (National Institute for Health and Care Excellence) guideline NG121, 2019, defines ‘high risk’ as follows:
“A pregnancy is 'high risk' when the likelihood of an adverse outcome for the woman or the baby is greater than that of the 'normal population'. A labour is 'high risk' when the likelihood of an adverse outcome related to labour (for the woman or the baby) is greater than that of the 'normal population'.”
At first glance this might sound completely reasonable. It sounds like it’s all about safety for mother and baby, and who wouldn’t want that, right?
But wait... I have questions!
How do we define the “normal population”? What is an “adverse outcome”, especially when we consider both physical and mental health? How adverse is adverse and who decides what that is when applied to an individual? Does “high risk” mean highest, higher or just a tiny bit higher than “low”? The “high risk” label is often accompanied by fear and worry – both the pregnant person’s and the health professionals’. What effect might additional fear and worry have on pregnancy or labour?
Medicalised labour and birth appears to be on the increase. A look at the monthly published statistics for birth outcomes for March 2022 for my local NHS Trust says that the “normal birth rate” is just over 50%. Nearly 40% of women who go to labour ward have caesareans. If the “normal population” referred to by NICE could be defined as ‘most common’ then it seems as if it won’t be long before medically managed labour/birth overtakes labour and birth with a spontaneous onset that proceeds in a straightforward, healthy way with a good outcome both physically and mentally for mother and baby. (I wonder how that can be put succinctly? A SOSPHO birth perhaps? - Spontaneous Onset Straightforward Pathway Healthy Outcomes? But I digress…) I wonder how we’ll define “normal population” then, and how we might measure against that to mitigate perceived risk? Risk management in pregnancy and labour usually involves offering increased levels of monitoring, managing and medically controlling birth. If many, or most, births are already measured and managed where do we go from there to further mitigate for increased levels of risk above that which is considered “normal”?
Sometimes it might be appropriate not to manage or control, but to watchfully wait. There’s always the option to wait and see if the thing that people are worrying about actually manifests, and then only to act to do something different or offer an intervention if there’s a really good chance that it will improve outcomes in a way that that particular family deems important.
Women in the UK have a right to be completely involved and informed with any/everything that concerns their body, pregnancy, baby and labour. Phrases that have been oft-repeated across decades now include, “My body, my baby, my choice” and, “No decision about me without me.” We have a right to clear, unbiased information. We have a right to choose not just from a ‘set menu’ of limited options, but from the ‘a-la-carte chef-will-cook-exactly-to-your-liking’ menu too, irrespective of whether care is provided by the NHS or privately. Importantly, whatever we decide we want or don’t want, we should be heard and respected even if other people (friends, bosses, midwives, doctors, family, etc) don’t agree with us. This isn’t just a fanciful idea; it’s the law.
Many families, particularly after a challenging, emotional, difficult or traumatic birth, hear the phrase, “Well at least you have a healthy baby.” A healthy baby is, naturally, important but so are healthy parents; both physically and emotionally. Of course, we shouldn’t forget that some ‘low risk’ pregnancies can have unexpected and upsetting or difficult outcomes too. That’s the problem with risk factors; it's hard, if not impossible, to know who will be the 1 in 10, or 100, or 10 000 that the increased risk points to. Often a lot of people undergo a lot of medical intervention in order to try and prevent one person/baby being ‘the one’. Sometimes the intervention that’s suggested leads to further intervention and sometimes it can be upsetting and cause more difficulties than it solves. If someone is unfortunately that one-in-x, it also doesn’t necessarily mean that the outcome will be catastrophic or incurable. Not all risks are equal even when they’re all called “high”.
If you’re told your risk of something "adverse" happening is “doubled” what is it doubled from and to in actual numbers? For example, if your waters break before you go into labour you may be told that you “should” be induced (have your labour started off artificially, which, incidentally, carries its own set of challenges, or risks) within the next 24 hours because the risk of serious infection to the baby doubles if they’re not born soon. In numbers, the risk doubles from 0.5% (5 in 1000 babies) to 1% (10 in 1000 babies) if they’re not born soon. To some people that increase in risk is at a level that feels unacceptable to them and so they might decide that they would rather take the risks/challenges/chances that come with induction of labour than the risks/challenges/chances associated with waiting for labour to begin on its own.
That the phrases, “You should….” and “We will….” should be outlawed is a whole other post! Suffice to say that any- and everything that is suggested or advised should be phrased as an offer that you can accept or decline without penalty. All NICE guidelines actually state this.
We assess levels of risk all the time, mostly without realising. Life is risky and we cannot guarantee under any circumstances that we will be totally, 100% safe. Usually we decide that the risks of driving to the supermarket outweigh the risks of a hungry family and so we make the journey without thinking about it. We might decide that the risks of walking under a ladder are less than stepping out into the road to walk around it, yet others would walk into the road to get around the ladder. We all perceive risk differently. When our children are involved, because of our protective instincts, risks sometimes loom larger than when we only have ourselves to consider. But, squirmily uncomfortable though it is, there is no 100% guaranteed risk-free option with anything. Low risk is still risk and that's life.
It's not always easy to decide what feels safest because it depends how we individually measure and quantify what ‘safe’ means, physically and emotionally. We all see the world through different lenses and these include our previous experiences and how those experiences affect us in the present, alongside our personal belief systems and many other things.
Dr Sara Wickham (see https://www.sarawickham.com/ ) has written extensively about the perception of risk in maternity care and what we do with it. She suggests that in most cases the word “risk” could be replaced with “chance”. Does that sound less scary? Is it more user-friendly? Does it reduce the jangling alarm-bells in your mind enough so that you can stop, breathe and consider whether what you’re being offered feels appropriate to you and your particular circumstances, beliefs, background and concerns? Try saying it out loud and see how it feels: “There’s a chance that my baby might be born with an infection.” Or “There’s a risk that my baby might be born with an infection.” Now add the words “slightly increased…” before "chance" and "risk" and see how that feels, because actually in many so-called ‘high’ risk situations, the ‘high’ part is misleading. How is ‘high’ defined? Does that mean that the majority (more than half) of all women/babies in this particular circumstance will have the worried-about outcome? Does it mean that if you didn’t have this particular box ticked there would be absolutely no risk/chance of x happening? Probably not, to both.
When the label is applied we can find it hard to remember that there’s a sliding scale. "High risk" seems to translate in many people's heads as, "This really bad thing is very likely to happen". In reality it is more likely to mean, "There's a tiny chance that this really bad thing could happen, and there's a much greater chance that it won't and that my baby and I will be healthy and well." Just as a 'low risk' label doesn't offer a guaranteed 100% protection and safety, neither does 'high risk' mean that anything bad WILL happen. I have heard many parents say, “I went ahead with x because I didn’t want to take any risks.” Yet we can’t eliminate risk. The best we can do is to decide which bunch of risks associated with any particular pathway feels more, or less, acceptable to us as individuals. That’s really what those parents meant. Whatever decisions we make we also have a right to change our minds, and our decisions should be accepted without coercion, side-lining or shroud-waving, let alone eye-rolling or tutting!
Of course, it can feel unsettling or scary to give voice to the decisions that feel right for us, particularly if we feel as if we’re going ‘off-piste’. We might wonder what reaction we’ll get. What if someone has said that doing nothing might be more risky or unhealthy than doing something (or vice-versa)? It can feel especially scary when that ‘someone’ is a health professional, an expert in their field, and you’ve never had a baby before. Parents say, “Who am I to question a doctor? They’re the expert. I don’t know anything.” It may be surprising to consider, but you do know an awful lot. You know your body. You know your values. You (if you’re pregnant) also know your baby better than anyone. Of course, this doesn’t make you an oracle but the health professional isn’t one either. It’s a big responsibility to say, “No thank you, I’d rather not do what you suggest.” However, often there’s time to go away and consider things. Big decisions or changes in how you’re looked after often don’t need to be implemented immediately. You can say, “Thank you for the information. I’ll have a think and let you know what I decide. What’s the best way for me to get in touch with you?”
Most of us make decisions in conjunction with other people and sources. Some of us will choose to listen to a health professional and immediately agree with everything that’s suggested, and of course that’s ok. Some of us ask on social media what others have done/might do in the same situation, or we talk to friends or family. We might read up on particular topics on recommended websites or books, scour the statistics of relevant studies, or we might turn to a source that seems to align with our personal ethos. Some of us go with our gut instinct. Most of us use a combination of all of the above which some people like to call a ‘decision triangle’. A decision triangle puts these sources of influence into 3 areas, sometimes called facts, folk and feelings. All of this is ok and what we do or don’t decide is up to us. Some of us want to take that responsibility head on and be very involved, others would prefer to delegate. Both stances and all the positions in between are fine. One size doesn’t fit all.
Some perceived risks are small, some are big, some have far-reaching implications, others don't so much. It's down to us as individuals to decide which bunch of risks sits most easily with us. There is no one right way in any situation. So, if we can't eliminate risk, all we can do is make the decisions that feel right for us (knowing that we also have the right to change our mind). We might also usefully work on ways to help us manage the difficult and sometimes scary feelings that arise when we consider living with risk, or chance.
Wouldn't it be great if everyone, whether they’re care providers or other 'folk' within an individual’s decision triangle, were supportive of a person's decision-making process? Wouldn't it be great if an individual's ultimate decision were respected and accepted by those around them, whether or not that decision aligns with that of others? Wouldn't it be great to feel supported to reach decisions that are right for you?
Counsellor, Antenatal Educator, Hypnobirthing Teacher