When the Personal is Political Part 2

Why is the personal political…

There have been some more caesarean section judgments which I will not link to for reasons which I have outlined in Part 1. You can find press commentary on them if you want to.

But this post is about my own experiences of mental disorder and how this would affect childbirth. And the reason I have decided to write something so self-indulgent is because I can, I have the autonomy to disclose my own story without adversely affecting the privacy interests of anyone else.

I have temporal lobe epilepsy, which is a common disability and not one which typically causes complex issues affecting behaviour or decision-making. Nothing which follows should be read as typical for all women with epilepsy.

When I have a complex partial seizure I lose the ability to talk or focus on what is happening around me, I often engage in spontaneous unwilled behaviour like repeatedly saying or singing short phrases, moving my face and right arm and occasionally spitting on the floor. Afterwards I feel dazed and tired and rapidly forget what has just happened. On a bad day this can happen multiple times. Seizures cause me to feel mildly depressed and tired. So far so normal. But in my case if I suffer a bad one, or a cluster of them I also suffer severe derangements of my mood and behaviour. This may not happen until a day after the initial seizure, at which point I become abruptly and dramatically angry, paranoid and aggressive. The paranoia is intense; I feel acutely aware that the whole world is dangerous and those closest to me intend to harm me. Tiny signals get rapidly interpreted as cues that I am being threatened. The sensation is so overwhelming I retreat and even run away in order to feel safe again. On more than one occasion my husband has called the police to find me in this situation. If at home I may go upstairs and violently self-harm which I cannot rationally explain. Perhaps it simply displaces the emotional distress I am experiencing. Certainly attempting to physically intervene to stop me is almost impossible and generally results in me redirecting my aggression to the person trying to restrain me.

I have not lived through anything else which I can draw upon to explain how terrifying this is even though I have done many things which frightened me at the time. I have scrambled down inadvisable cliff-faces knowing that I could fall and die at any moment but I have always had the companionship of others and the capacity of my own mind to keep this fear under control. What distinguishes acute paranoia from actual danger is the total isolation it generates. When paranoid the motives of anyone who tries to reassure me or make me safe are questionable and my own mind provides no reassurance either.

To give an example, on one occasion, when my husband had called 999 because he was so disturbed by my behaviour the police attended our house. One of the officers was very insistent that he wanted me to sit down but refused to sit down himself. With hindsight I can find reasons for his behaviour: I was very agitated and talking rapidly and he may have hoped that it would be easier to talk to me if I was sitting still and had caught my breath, he was also at least 6’6” tall and may well have been worried about breaking our furniture. But at the time, in our house which has low ceilings, the effect was as if Nosferatu was herding me into a corner in order to smother me.

So paranoid fear can be like horror and paradoxically worse than the fear we suffer when really in danger.

Thankfully post-ictal psychotic episodes are usually short and can generally be controlled with sedatives or anti-psychotics if you recognise the signs in time. And if the seizures are controlled as they generally are in my case they don’t happen at all.

Your medical history is fascinating but wasn’t this a legal blog…?
For women with epilepsy making judgements about treatment during pregnancy can be difficult. Anti-epilepsy drugs raise the risk of a foetus suffering congenital malformations, but discontinuing medication raises the risk of the mother suffering seizures. And childbirth raises more issues. One of the times at which a pregnant woman with un-controlled epilepsy is most likely to have seizures is just prior to the birth. Complex partial seizures do not create risks during labour, but a paranoid labouring woman with a history of violent self-harm and a tendency to attack anyone who touches her unless heavily sedated with benzodiazepines which certainly are harmful to the baby…that takes a bit more thinking about. I have been acutely paranoid and I have experienced childbirth but thankfully, as yet, not both at the same time. I can, however, imagine that the two conditions are incompatible with the exercise of good judgement.

What would be the optimal way to make judgements which empower me and promote my autonomy around childbirth if I had the good fortune to become pregnant?

It turns out this is a more interesting question that I had expected because on reviewing the options everything which is available to me legally strikes me as largely irrelevant, and the things I do want to be entitled to I cannot have.

Supported decision-making alone is not useful to me. You can’t support the decisions of paranoid angry people, because quite often the focus of the paranoid angry person’s ire is the person who would otherwise be the supporter. Clearly, my husband would act as my birth partner as he did when we had our first child. He knows my medical history and importantly our relationship is one characterised by trust. If the only problem was that I might have seizures that would make me unable to reason about information needed to make decisions during labour then supported decision-making would be fine. My husband is the ideal person to break information down for me with me, identify judgments defined by my will and intentions and relay them to the clinical team.

But if I get seriously, delivery-room wrecking, furious he cannot support my decisions because he could not know what they are. In a state of acute paranoia I am unlikely to interpret a choice between speeding up a slow labour with a syntocinon drip or moving straight to a caesarean as one motivated by clinical concern. I am much more likely to assume that everyone involved wants to steal the baby (including my husband… especially my husband) and want to escape. He would know that I don’t want anyone to steal the baby but that isn’t actually a birth plan.

So supported decision-making reaches its acknowledged limits when someone’s express will and intentions run counter to those understood by those who know them best.

What about an advance decision?
I can use an advance decision in English law to specify treatment interventions which I wish to refuse. So if I knew that I did not want to have a syntocinon drip administered to speed up labour, and that there might be a possibility that I would lack mental capacity during labour to make that decision I could specify this in advance and the decision would have to be respected. The effect of over-riding an advance decision should be the same as the effect of over-riding a contemporaneous refusal – i.e. the clinician who administered the drip would be committing the tort of battery and a criminal assault. However, there are no actual cases which have been decided to this effect yet. I imagine the paucity of caselaw is likely to be the result of the comparative difficulty of proving battery in a clinical context compared to proving personal injury. Another unknowable factor is whether the cases do not even get contested, but there have not been any hearings concerning the quantum of damages to be assigned on such facts so this seems unlikely.

Several things make advance decisions under the Mental Capacity Act a bit rubbish. One is that they can be made verbally and revoked verbally whilst the person making it retains capacity. This should mean they are flexible, but would make a verbal directive or revocation hard to provide evidence for in court. The clinician is only required to act upon an advance refusal if she believes it to be valid, otherwise she has a defence that she did not think it applied. So if I say at one meeting with my obstetrician ‘No way do I want a syntocinon drip to speed up labour’ and then at a later meeting to discuss mechanisms for starting labour where syntocinon is mentioned the obstetrician says ‘Let’s just clarify you’re happy for labour to be induced?’ and I say ‘Yes’ it would be easy for the obstetrician to form the impression that I have changed my mind and am now happy to have the syntocinon drip used to both induce labour and to maintain contractions. Whilst in my mind it remains clear that I am only consenting to the use of syntocinon if labour does not start spontaneously.

In my experience as a patient this kind of muddle occurs frequently. I’ve got better at clarifying exactly what I’m doing before leaving the consulting room but for the first couple of years of the neurology and psychiatry merry-go-round I preferred not to ask questions in case they thought I was mad…

So you have to be pretty good at being a patient already before you can actually use an advance decision.

Of course advance decisions can, and perhaps should, be written. And most pregnant women have one. We call it a birth plan and they are slightly problematic documents, since by its nature birth tends not to follow plans. On the one hand they can raise expectations that the birth will be predictable, whilst on the other they provide a useful opportunity during antenatal care to clarify aspects of routine care in childbirth which women may wish to refuse. These are advance decisions and they should be respected.

The great difficulty I have with using a birth plan as my advance decision is that I can only use it to refuse intervention not as an advanced consent. If I were to decide that I wanted to consent to the use of anti-psychotics to control my behaviour if I became very agitated around the time of the birth irrespective of the harm this posed to the foetus I cannot use the birth plan to pre-order that. If I can give a capacitous consent to anti-psychotic medication near the time of the birth and a doctor agrees this is clinically indicated that is fine. If I could not, since it would clearly be treatment for a mental disorder I would need to be detained under the Mental Health Act in order for such treatment to be administered against my wishes and the decision would then be based on what a clinician decides would be in my best interests, not on my prior consent to treatment (and if I then went into labour and needed other treatment during the labour such as pain relief which I also could not consent to due to lack of capacity but I remained detained under the Mental Health Act this further admission to hospital for treatment for a physical condition whilst subject to a deprivation of liberty for a mental disorder could only be authorised under the inherent jurisdiction of the High Court because detention under the Mental Capacity Act and the Mental Health Act cannot occur simultaneously. Frankly I’m not sure it would just be me that is mad at this point…).

At this point we can also consider the hypothetical benefits of a Ulysses Agreement. A Ulysses Agreement is a provision which does not exist in English law but which in theory could allow a patient to state that if a certain condition is met, either loss of decision-making capacity or perhaps the re-emergence of symptoms of mental disorder (in my case perhaps having a series of complex partial seizures), she could consent in advance to the administration of an intervention even if it were against her stated wishes at the time. A rationale for this in my case could be that the decision that is earliest in time should be respected as still being more indicative of my authentic will and interests than that made at a time when I am cognitively disabled by seizures and anxious about the imminent birth.

The problem with the Ulysses Agreement idea is firstly that it would not be valid in English law. If I was making a capacitous refusal of the medication at the time of administration it would be impossible to force me to take them without first detaining me under the Mental Health Act to which other criteria pertain, critically that I pose a risk to myself. Since the Mental Capacity Act does not permit forced treatment for mental disorder the issue of absence of decision-making capacity does not currently arise under English law. The legal issue of how to reach a best interests decision regarding treatment under Part IV MHA is subtle. At the moment it appears that doctors may be choosing not to administer effective medication to control the symptoms of mental disorder in the third trimester of pregnancy to protect the baby from the potential of complications during birth or withdrawal effects after birth. I am not aware of any domestic caselaw considering the issue of best interests decision-making under Part IV MHA during the third trimester of pregnancy, but it seems a logical implication of Re MB that if the interests of the foetus cannot override the mother’s autonomous interests during childbirth then the same is true at all earlier stages of pregnancy. However, it is also plausible that most women empowered to make the judgement on their own behalf would want to have the likely effect of medication on the baby taken into consideration, and that a failure to respect this might have an adverse effect on the mother’s mental health, making it potentially appropriate (in those circumstances only) to reduce medication to the safest levels possible even if this jeopardises the mother’s chances of attaining autonomous decision-making during childbirth.

The ethical problem I have with Ulysses Agreeements is that far from empowering me they only enable me to elect to be coerced.

What would I ideally like?

My ideal model would be not to become ill at all, for which I need excellent neurological care coordinated with excellent obstetric care. I get excellent neurological care already.

Of course I would want to give birth to a healthy child, ideally with minimal intervention, and without coercion. Which is presumably the same system of values that my care-givers would be applying. So the only point we might diverge upon is at what point the threshold of risk posed by my history of mental disorder justifies coercive intervention. We’re most likely to make good judgements about risk in situations of uncertainty where we have the best available information, and the relationships involved are characterised by trust.

The reality of childbirth is that it is unpredictable. In this sense my history of mental disorder does not make my care more complex than that of a woman with a history of a cardiac or metabolic disorder which might require urgent intervention during labour. Much of the information required for decision-making (the progress of the labour, the baby’s heartrate) isn’t available until a point when decisions have to be made at great speed. The key difference is only, that I am likely to be highly resistant to emergency intervention, unlike a woman suffering eclampsia.

Reducing the risk of emergency intervention, maximising the quality of the information available to those having to make the risk assessments if my behaviour were to become volatile maximising my family’s trust in any substitute decisions could best be achieved by having a small group of healthcare professionals involved, ideally people already known to me before the birth.

There is no reason to assume I won’t get this type of care but it is not common and unfortunately I have no ‘right’ to such care. And whilst the Mental Capacity Act empowers Hospital Trusts to safeguard their decisions from challenge by applying to the CoP for a declaration that to perform a caesarean on a woman unable to give consent would be lawful, it provides no equivalent provision enabling me, whilst capacitous, to legally reinforce my birthplan and demand that my Hospital Trust delivers facilities at a specified hospital, or one of a selected team of specialists, or 1-1 midwife care on the day of the birth.

If I could not be confident of care of this nature during a vaginal delivery I might prefer to opt for an elective caesarean. A caesarean section is an invasive procedure and having given birth vaginally before I’d prefer to do so again. So it is not what I would choose. The longer physical recovery time means that it isn’t optimal for women with epilepsy who need their sleep. But perhaps it would be best just to choose a caesarean to reduce my anxiety. NICE Guidelines say I should be able to do this, but NICE Guidelines are not legally enforceable. If I run up against an obstetrician who thinks a vaginal delivery is clinically indicated based on my previous history and my anxiety is misplaced I could not demand an elective caesarean as of right.

So when I work it through what I want it is an enforceable right to continuity of care to safeguard sensitive clinical decision-making, or an enforceable right to pre-empt clinical judgement and demand a specific procedure.

Instead I have no rights to the first and the Mental Capacity Act only guarantees my right to refuse the latter procedure.

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