CHRISTMAS TWO YEARS ago, a story emerged of such compelling sadness, but also of grotesque horrors, that it was hard to look away. A young woman, mother of two small children, was approximately 15 weeks pregnant when she was declared clinically brain dead.
The hospital that she reposed in – and another that she was transferred to – uncertain of the position of the foetus under the Constitution and fearful of prosecution under the Protection of Life During Pregnancy Act 2013, did not turn off the life-support machine.
This state of “experimental medicine”, as described by Dr Frances Colreavy – an expert in intensive care treatment at the Mater Hospital – continued for 20 days until the woman’s family brought an application to the High Court to allow them to end the life-support.
During the emergency Divisional Court hearing, P.P. v HSE, the view of the expert witnesses, as well as the HSE, was that there was no reasonable prospect of the baby being born alive if the life-support continued.
The court held that it was in the best interests of the unborn child to authorise the withdrawal of life support, and said that maintenance of life support would deprive the mother of dignity in death and subject her father, her partner and her young children to “unimaginable distress in a futile exercise”.
We can rationalise and package such sad, horrific stories as one-off cases. But the government knows that this situation could arise again: remarkably, it has even legislated for it, in one small sub-section of a very recent act.
The Assisted Decision-Making (Capacity) Act 2015 was signed into law by the president last December. It includes governance on Advance Healthcare Directives (AHD): these allow people to draw up guidelines on how they would like to be treated medically, should they lose capacity into the future.
As former minister for health James O’Reilly noted, the AHD “has been recognised as an expression of an individual’s autonomy”.
That is, except if you’re a pregnant woman.
A woman can create an AHD that states her wishes to refuse treatment in certain situations, for example, if declared brain dead. However, under s.85(6)(b) of the new law, where a woman makes an AHD specifically setting out that she wishes to refuse treatment, even if she is pregnant, medical professionals are required to ignore those wishes.
So, let’s say you are a woman of child bearing age, perhaps with a serious illness, and you read about that case over Christmas 2014 and thought, ‘I don’t want my family and children to go through that horror show, I’m going to draw up an advance healthcare directive’.
And let’s say that in the AHD you specifically state that you wish to refuse treatment, even where you are pregnant and where the foetus is 20 weeks or less. If that scenario then arises, despite your clear instructions otherwise, life support will not be turned off: s.85(6)(b) kicks in and the medics must automatically refer the case to court.
In other words, your wishes are irrelevant; your expression of your individual autonomy is meaningless; your actions to protect your loved ones futile.
Instead of providing that doctors may exercise their discretion in cases where the foetus has minimal chance of survival, the government – shackled by the Eighth Amendment – has required an automatic referral to court. Bizarrely, this is seen by policy makers as a vindication of the woman’s rights, because her will and preference will be taken into account by the court.
They decided that if the legislation stated that a pregnant woman’s AHD would automatically become invalid, that would be too extreme. It’s like:
Hey guys, we totally think you ladies should have rights and all, but we will give the High Court the final say, OK?
What this sub-section is saying is that the way that the P.P. v HSE case played out – where the matter was brought to court even where there was overwhelming evidence that the foetus would not survive – was the correct way. Not only that, but it is saying that this is the correct way even where the woman expressly wishes it to be otherwise.
One of the issues of controversy in P.P. v HSE was the gestational stage of the foetus – 15 weeks – when the mother became brain dead. A German report was discussed during the hearing, which looked at 30 cases of brain death in pregnant women over a period of 30 years. Seven of the cases related to foetuses of 17 weeks or less. Of these, two went on to be born, one of whom died thirty days post delivery.
To give a foetus optimal chances of survival, it should be in utero for 32 weeks. In P.P. v HSE, this woman’s family were looking at a scenario of waiting potentially 17 weeks until they could lay their deceased loved one to rest.
In one way, it was an easy judgment for the court to make. There was so much overwhelming evidence that the foetus was unlikely to survive that the court did not have to weigh competing rights. But what if things had been different and there was a greater chance of survival? How would the woman’s right to die with dignity fair against, say, a 40% chance of survival?
And what about the constitutional rights of any children of a woman in that situation.
Who could think that it was in their best interests to be exposed to this experience? What do you tell tiny children when their mother is brain-dead yet being kept artificially alive? Wouldn’t they hold onto any merest hope of her still being alive, even when she is clearly no longer herself? How are they supposed to process that experience?
P.P. v HSE seemed like a clear-cut case where medical discretion should have been allowed to operate and end the family’s distress. Instead, the medical team were fearful that exercising their discretion, even in a case of overwhelming evidence supporting the end of somatic care, would leave them open to prosecution.
The Protection of Life During Pregnancy Act 2013, which was passed with the intention of clarifying the position in relation to abortion after the X case, has not made things easier for medical practitioners.
Evidence was given to the court in P.P. v HSE that the discussions of the medical team looking after the brain dead woman were focussed on the difficulties for the medical practitioners because there are no medico-legal guidelines, and because of difficulties arising from the Eighth Amendment to the Constitution.
One of the team said how difficult it was not to be able to follow the wishes of the family because of this uncertainty.
Even the HSE’s own consent guidelines, published in 2014, accept that there is no clarity:
…because of the constitutional provisions on the right to life of the “unborn”, 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.
At least the HSE seems to have conceded that there should be medical discretion when the foetus is not viable. Which is more than s. 85(6)(b) does.
The ambiguities and ensuing problems arising from the 2013 act are not accidental or due to some governmental oversight. They are intentional. This new legislation makes that clear.
Instead of providing guidelines or allowing for discretion, the government shut down any potential for female autonomy in pregnancy. To change this, a referendum to repeal the Eighth Amendment must be part of the negotiations for government.
Kate Butler is a barrister and member of Lawyers for Choice. Find them on Twitter @lawyers4choice and her @katemarcella
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