The problem with informed consent

Beth Russell is a midwife, Birthrights training coordinator, MBB Champion and mother who has become increasingly frustrated by systemic issues within maternity care. Here, she explains their impact on informed consent and details her hopes for the future.

The legal perspective

The law is clear: women and birthing people have the right to make informed choices about their pregnancy, birth, postpartum and beyond. We all have the right to bodily autonomy and to make decisions about our care. However, for the women and birthing people making decisions and the healthcare professionals supporting them, this is rarely as simple as it sounds.

Let’s begin with what the law says. In 2015, the landmark case of Montgomery v Lanarkshire changed the legal test for informed consent. For informed consent to be achieved, there needs to be a dialogue between the woman/birthing person and clinician with a two-way flow of information. The healthcare professional must provide unbiased, evidence-based information on the risks and benefits of the proposed course of action alongside any reasonable alternatives. 

The healthcare professional is required to discuss the risks material to the person in front of them, as well as any pertinent risks associated with the choice. The test of whether something is material to the individual is “whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it”.

A crude example might be that for someone who works as an opera singer, a 1:10,000 risk of vocal cord injury in a surgery might feel more significant due to its implications on their work than it may for someone who does not do such a job – therefore, it would be important to mention this in the discussion. 

So, healthcare professionals must ensure they listen to what is important to the individual they are supporting in order to identify material risks, they must offer information on the risks and benefits of their recommended course of action and of any reasonable alternatives in an unbiased and evidenced-based way. They must ensure they talk through any questions and concerns the woman or birthing person has and allow them time to make their decision. Then they must clearly document their interaction and support the individual in their choice, regardless of whether or not the choice is in alignment with their recommendation. 

On paper, it sounds easy enough to do; however, in reality, this is often not happening as it ought to. Significant numbers of people who have experienced birth trauma report a lack of informed consent as a contributing factor.

“We all have the right to bodily autonomy and to make decisions about our care.”

Informing with intent

In my work facilitating postnatal listening services across two NHS trusts, a lack of informed consent has consistently come out as a theme. From my discussions with colleagues working elsewhere, this appears to be an issue that is prevalent up and down the country despite countless reports and initiatives over the years which, in theory, should make it less common.

In my work in the charity sector, I have also heard from many women and birthing people nationally, struggling to access nuanced, unbiased information-sharing and support for their informed choices if they fall outside of the recommendations within hospital guidance. 

Why is it that so many women and birthing people are not being afforded the opportunity to give or withhold their informed consent and make informed decisions at one of the most important times in their lives? My view is that it is due to a maternity system running on empty, carrying the misogynistic, patriarchal culture of old insidiously within it.

The majority of maternity staff are women and the very same systems that harm those using them are also harming healthcare professionals. Asking us to work more with less, expecting us to withstand insurmountable stress and simply carry on, imploring us to pull our socks up and keep going despite, at times, untenable conditions, witnessing traumatic events or experiencing perinatal trauma ourselves. 

Of course, there are ‘bad apples’ who genuinely don’t believe that women should be able to make their own choices about their care; however for the majority, I believe it is far more complex than that. I am firmly against women and birthing people being denied their right to make informed choices, let me be clear on that. It is for this reason that I would like to see us work to uncover the deep-seated issues festering in the culture of our NHS (and beyond), which are preventing adequate, appropriate informed consent conversations being the norm.

To begin with the obvious, it is incredibly challenging to have the depth of conversation sometimes needed within the allocated appointment times, particularly when there are a number of important  factors that the woman/birthing person wishes to discuss, the Trust guideline recommends to discuss and/or you are using an interpreting service.

Couple this with a distinct lack of continuity of midwifery or obstetric care and the challenge becomes even greater.

Beginning the interaction with space for the individual to express what they hope to get out of the appointment and to share what is important to them often gives a head start on identifying material risks. Nevertheless, it is common to feel the interaction is rushed or to end up continuing the conversation on borrowed time. In the end, something has to give; sometimes this is the quality of the conversation and sometimes this is the (unpaid) time it costs the healthcare professional. I would argue that an inadequate conversation often also costs the well intentioned, overworked healthcare professional in moral distress too, but that is another blog in itself. I absolutely recognise that the cost to the individual woman/birthing person in each interaction is also far greater.

“I would like to see us work to uncover the deep-seated issues festering in the culture of our NHS”

Providing better resources

Perhaps my biggest frustration is the lack of nuanced, easy to use resources available to support clinicians in having these conversations well. NICE guidance on “shared decision making” (a title that I already have issues with as it the woman/birthing person who makes the decision) advises numerical information to be provided using absolute risk rather than relative risk. For example, saying the risk increases from 1 in 200 to 1 in 100 rather than saying “the risk doubles”.

I quite agree that using relative risk is often unhelpful and can be used (unwittingly or not) to coerce rather than inform. However, in my experience, the absolute risk of many eventualities is rarely provided in national guidelines and, furthermore, can be challenging to decipher rapidly from the raw research. Without such numerical data being readily available to clinicians, they rely on their own reading, research and clinical experience to guide information-sharing, meaning there is greater room for bias to creep into the conversation. Plus, the research literacy of professionals may vary drastically, again another issue in itself.

Prior to going on maternity leave, I spent a fair amount of my time outside of paid work reading books and research surrounding maternity care. I completed an MSc in Advanced Midwifery Practice in the hope of improving my ability to read and use research in my clinical practice (after which I continue to find some research incredibly challenging to fathom). I also joined a local research network and actively engaged in conversations around research. In doing all this, I felt fairly abreast of the research most relevant to my practice and therefore able to have more nuanced, evidence-informed conversations with women and birthing people.

As I prepare to go back to paid work in a few month’s time, whilst mothering every hour outside of this, I wonder where on earth I will find the time to keep sufficiently up to date to be able to continue having these conversations effectively.

The most important lessons I have learned in my midwifery career have always been because of the people I am supporting asking me something I don’t know or making decisions I have not yet experienced. Whilst some of this learning can be done in working hours (skimming over a paper or updated guideline with the person I am supporting), at times a deeper dive is needed, and no time is made available for this in any clinical role I have worked in so far. This would almost always happen in my own time.

By law, it is incumbent on me as a practitioner to ensure I am giving up to date, evidence-based information to those I am supporting. Morally, it also feels extremely important to me that I get this right.

Whilst the aforementioned NICE guidelines state that “Organisations should ensure that staff presenting information about risks, benefits and consequences to people have a good understanding of that information and how to apply it and explain it clearly,” I have never experienced a mandatory training package that has truly given me the ability to do this, and ultimately the responsibility falls on my shoulders.

The stakes are high; I want to get it right. I want to ensure that the women and birthing people in my care are supported well in their informed decisions to do what feels safest for them. I want to support them to have choice and control over their care, thereby hopefully reducing their risk of experiencing birth trauma. However, the systems I practice in really do not make it easy to do this. 

“Ultimately the responsibility falls on my shoulders”

Recognising trauma

A significant number of midwives and obstetricians experience psychological distress as a result of their work. This work is a great privilege but also a huge responsibility. Many experience stress as a result of challenging working conditions (no breaks, inflexible working patterns, short staffing, under resourcing, cultural issues). Moral distress is prevalent too with healthcare professionals feeling unable to give the level of care they came into the profession to provide or feeling torn between doing right by the woman/birthing person in their care or adhering to the guidance and cultural norms of the institution.

Layer onto this the fact that there is always a possibility of witnessing traumatic events associated with working in healthcare and that many may have had traumatic perinatal experiences in their own life too, and it is an impossible base from which to try and have an unbiased conversation. 

If a clinician has witnessed a poor outcome or traumatic event, the risk of that happening again to another woman or birthing person feels all the more real. The statistical risk may remain the same but (in the absence of robust psychological support) to that clinician, supporting a similar choice in future may feel fraught with concern that may influence how they discuss a situation. Whether consciously or not, they may be nudging the person in their care in one direction or another with their decision making.

It is fair to say that no human can ever be truly unbiased, we all have preconceived ideas and opinions. However, for healthcare professionals, it is imperative that every conscious effort is made to be self-aware about our biases and to present information in as balanced and fair a way as possible. This is made even more challenging to do when we are stressed and our window of tolerance for nuance and critical thinking is diminished.

In the world of psychotherapy, practitioners must complete mandatory clinical supervision where the emotionally and psychologically challenging aspects of their work and personal lives are explored to ensure they are a safe pair of hands for their clients. It baffles me that such emotionally and psychologically important work as holding families through pregnancy, birth and postpartum (in all their delightful, heartbreaking varieties) does not merit equally robust psychological support.

The fact remains that when we as healthcare professionals fail to listen to women and birthing people and don’t give quality information in as unbiased a way as possible, women and birthing people suffer. This is unacceptable and the rates at which this is happening need urgent attention.

I offer this blog, not as an excuse for when informed consent goes wrong, but to highlight that the problem is not as simple as asking healthcare professionals to listen to women and do better. In order to achieve this, serious attention needs to be paid to the psychological support required by all NHS staff in response to traumatic events and emotionally challenging work.

“It baffles me that such emotionally and psychologically important work does not merit equally robust psychological support.”

Holding out hope

To afford practitioners the tools to have these conversations effectively, I dream of a utopia where a living resource of up-to-date research, pulling out absolute risks, key details and any issues or limitations is kept relevant by a team of maternity and research experts. This could then be relied upon by maternity staff to act as  an information hub that is as nuanced and balanced as possible to support informed decision making.  

In that utopia, our NHS would be properly funded and resourced, staff would be afforded breaks and flexible working patterns, there would be a reliable system to ensure short staffing was a rarity and the cultural issues that permeate our current system would be dismantled, replaced with a culture that is genuinely anti-discriminatory, person centred and empathetic at its core. Is this too outlandish to ask? Not if we consider that we are all born and therefore all impacted by this issue. Nor if we recognise that each and every woman and birthing person deserves and is legally entitled to respectful care that upholds their rights at this critical time. 

There are many more issues that I have not addressed here. Systemic racism, issues with regulation of professions and services, interdisciplinary and ideological conflicts, hierarchical structures and more. All of these contribute to poor quality conversations on informed consent with a resulting impact on the experience of perinatal trauma for women and birthing people.

Although these issues are a drop in the ocean amongst the current challenges facing the NHS, they are some of those I have experienced most frequently and can speak to the realities of. I sincerely hope to see and be a part of the future change needed to make birth better for women and birthing people in the UK.

“I dream of a utopia where a living resource of up-to-date research is kept relevant by a team of maternity and research experts.”