‘Stories Are Shared Everyday In Private’

Further to our post yesterday, Whose Body Is It Anyway, Jene Kelly, co-chair of Association for Improved Maternity Services in Ireland (AIMSI), writes:

This case has led to widespread debate on the issue of consent in the Irish maternity services. On one side, the argument is that no medical professional would perform an invasive procedure without obtaining consent – that medical professionals must be given scope to practice as they see fit, as the trained expert.

On the other, it is recognised that many of the practices used in Irish maternity services are not based on evidence nor best practice but routine hospital policy and that this judgement has stripped a woman of agency over her decisions and body; her right to consent.

The issue of consent in Irish maternity services is not new, but, it remains largely unexplored in mainstream society or media outlets. Sometimes, the issue of consent reaches our living rooms, in individual cases like this one or in group actions such as the Symphysiotomy survivors, giving the public a perception that consent breaches are rare, extraordinary, and perhaps even historical events confined to a darker chapter of Irish history.

The reality is that Ireland’s maternity consent issues haven’t gone away. Stories are shared everyday in private closed groups between women, over tea with friends, at the local toddler morning, on parenting forums, and in the dead of the night when everyone sleeps. While not the majority, a significant proportion of women will have experienced consent breaches at some stage of their maternity care, often with physical and psychological consequences.

Ireland has difficulties when it comes to pregnant women and rights. Every Irish citizen has the right to informed consent during medical treatments. This means tests, procedures, and interventions are to be discussed clearly with an individual in an unbiased manner, based on the highest quality evidence available, both the benefits and risks of opting in or opting out, in order for them to make the best decision for themselves at that time. For pregnant women in Ireland, these rights are challenged by the Irish Constitution and Article 40.3.3 – which gives equal rights to the woman and foetus. This conflict is highlighted in the National Consent Policy.

The National Consent Policy states:

Page 41: 7.7.1 Refusal of Treatment in Pregnancy.

The consent of a pregnant woman is required for all health and social care interventions. 
However, because of the constitutional provisions on the right to life of the “unborn” (12), there is significant legal uncertainty regarding the extent of a pregnant woman’s right to refuse treatment in circumstances in which the refusal would put the life of a viable foetus at serious risk. In such circumstances, legal advice should be sought as to whether an application to the High Court is necessary.

Citation: (12) Article 40.3.3 of the Irish Constitution (1937)

Relevant factors to be considered in this context may include whether the risk to the life of the unborn is established with a reasonable degree of medical certainty, and whether the imposition of treatment would place a disproportionate burden or risk of harm on the pregnant woman.

The result of this policy is it leaves women and medical professionals with a degree of uncertainty which is open to interpretation. Expert recommendations are often based on personal opinion, biases, and previous experience, not necessarily evidence. As a result, practice and policy varies not only between individual units, but individual providers. This latest High Court ruling brings a new component to this conflict by suggesting that routine practice is the benchmark for negligence cases, not evidence-based care, and that the medical professional can over-ride a woman’s right to consent/refusal regardless of the presence of serious risk.

Is consent an issue of concern in Irish maternity services?

In autumn of 2007, AIMS Ireland ran an online survey on the topic of Availability of Information and Consent. It was open to any one who wished to fill it in. Respondents who completed the survey were anonymous. The survey was small (161 women) and self-selecting.

The survey consisted of Quantitative (statistics) and Qualitative (comments) data. A larger survey by AIMS Ireland, What Matters to YOU 2014 , with nearly 2,000 respondents, will be published this autumn.

More than half of respondents (61%) said that in pregnancy (outside of antenatal classes), they had no opportunity to discuss choices and information regarding hospital policies, routine procedures and common procedures, tests or treatments which you may need to make a decision about during your pregnancy, labour or birth. Of the 39% who responded that they did have opportunities, over half (53.1%) had to be the one to initiate the discussion to gain access to information.

Information was seen to be based on hospital policy, rather than objective evidence-based sources. Women who tried to challenge this were put in a difficult and unfair position, for example:

“Information given is usually hospital-based policies only, rather than a full benefit/risks/alternatives etc analysis. My experience was that this information was presented in a very biased way and that, even if you refused and had the evidence to justify your position, you were still made to feel that you were in someway putting your baby at risk and were made to feel difficult or unreasonable. It takes a very strong person to be able to stand your ground in these circumstances especially for a first-timer”

They also perceived that information was used as a source of pressure on them:

“I feel that every woman needs to have access to all information. I was very
informed but it was due to research done by myself. However when you are in the hospital there is a subtle pressure put on you saying you want your baby to be safe”

This information was also felt to be very negative and undermining of women’s abilities:

“There is too much focus on what could go wrong with labour and birth and so
starting from a negative position – instead of building the expectant mother’s
confidence that things have as much chance of going well and what she can do to maximise this. This is particularly prevalent in hospital ante-natal classes which seem to overly focus on the pain of labour, need for interventions, etc instead of providing positive examples. Also, you are not made to feel that your body is capable of a successful and natural birth and so there is less trust and confidence going into labour.”

In this survey, 75.6% of respondents stated that they felt that consent is an issue of concern in the Irish maternity system. Further questions on the survey have unfortunately illustrated how key an issue consent is with only 38% of women in labour and 33% of women during birth responding “Yes, my consent was fully sought and given”.

More than half of respondents (57.6%) were not given the option to refuse a procedure, test or treatment. Regarding informed refusal, 23% responded that they were given information and choice for all procedures.

AIMSI’s survey found that the instances of procedures specified by women to be of greatest concern were in relation to invasive procedures such as artificial rupture of membranes (ARM), Episiotomy, the use of Oxytocin, and Membrane Sweeps. Many women added comments specifically on these issues:

“I had an ARM done without consent and against my wishes – I said I did not want it and it was done anyhow.. my baby and I were never in any distress or at risk”

“Waters were broken during what I had been told was an examination to see if I was dilating. The first I knew about having an episiotomy was seeing the junior doctor coming towards me with a scissors. My baby was delivered by ventouse, something which was necessary for her survival but I was not informed of what was happening at any stage, it was all spoken about in code or hushed voices. I assume as I was a young mother (22) they thought I didn’t have the right to know what was happening.”

“Waters broken at 3cm after 10mins in labour – no consent asked for or given.”

“Episiotomy ‘I’m going to make a little cut, ok?’ (similar for checking if waters were fully broken).”

Other comments illustrated a clear culture of abuse against birthing women.

“Had a very rough vaginal exam during a contraction asked midwife to stop please she proceeded, I cried she forced my legs open and continued.”

“All the women on the evening of my first child where given Pethidine on the orders of the ward sister so that they could have a bit piece.”

The AIMSI survey was conducted in 2007, however, women sharing their birth stories on social media suggests that this issue has not improved. In preparation of this article, AIMS Ireland asked its Facebook and Twitter community, “Do you think consent is an issue of concern in Irish maternity services? What are your experiences? #askmefirst”.

Responses illustrate further examples of uncertainty and disregard for issues around consent and methods of coercion used with women who make informed refusals:

“I was phoned at home and had fistulas mentioned to me by the Master, bascially trying to scare me into hospital for antibiotics. I had the dead baby speech from 3 different HCPs and the very condescending “If you were my wife, I would induce you.” in front of my husband.

“Just yesterday I was told “this is not something you think about, you just do it” when refusing to give a sample for GB strep testing.”

“I had a midwife who had to ‘check’ with a manager to see if I was “allowed” to refuse a routine test at my booking appointment.”

“On my first baby I was coerced into having my waters broken as part of induction process. (I say ‘coerced’ because I was told delaying this wasn’t an option, even though I repeatedly requested it.) This resulted in an emergency c-section due to (as I had feared) interuterine infection.”

“I was told that if my baby was born over 4.5kg they would be taken to ICU and kept there for 24 hours to be monitored for blood sugars, regardless of the fact there were absolutely no other risk factors, no diabetes, no GD, no symptoms and no reason why heel prick tests could not be done regularly on the ward if required. I was told that this would be done regardless of my consent.”

The majority of care in Irish maternity services is not based on evidence or best practice. The majority of women only have access to centralised obstetric-led hospitals under obstetric policy – most women have no access to midwife-led care options. High-quality evidence shows that for low-risk women, obstetric-led care is a risk factor in itself. Hospital-based maternity services largely practice Active Management of Labour, which is not based on medical need but the practice of routine intervention for all women. This includes artificial rupture of membranes (ARM) on admission, with a clear plan for management to ensure progression is achieved within a set timeframe. These practices appear on the “Do Not Do” list and are not follow best practice. They are shown to do more harm than good, increasing risk factors to both the woman and baby.

Why do we insist on such low standards for our women and babies?

There is a culture of total acceptance in Ireland of the expertise and power of medical professionals. Medical professionals are above the law and are absolved of accountability through the lack of legal obligation for medics to disclose errors in practice. There is no duty of candour required in the Irish health services and this is never so apparent than in pregnancy and childbirth. Women are so often expected to take what they get in their maternity care and are expected to be grateful for it. Regardless of the quality of care, breaches in rights, loss of dignity, poor treatment, or how their birth has affected their lives. Regardless of the repeated breaches of best practice in Irish maternity care throughout the decades.

We need to embrace women’s experiences, support them, encourage them to insist on the best possible care for themselves and their babies. Women birthing in Ireland deserve the highest quality of care possible – upheld to the highest standards. Not just headlines claiming to be the safest place to have a baby, but actual changes that will improve the quality of care that women receive. A system with enough staff, a system that is appropriate to their medical needs, a system that respects women and protects their rights. And in the instances this doesn’t happen, when women are let down, we must embrace them. Support them. Believe them.

Previously: Whose Body Is It Anyway?

Mark Stedman/Photocall Ireland