Most people with phobias will still retain capacity to make decisions. Decisions that have nothing to do with their phobia will obviously be unaffected. But many people with a phobia can still make decisions affected by their phobia. For example, someone with a needle phobia could decide to have a blood test if they understand that it is particularly important for their health.
But there is more to consider. It would be important to consider the effects of different options on P’s mental health. Giving birth at home (if uncomplicated) would be likely to cause least anxiety to P. But if she were to develop a serious complication and her baby were to be seriously ill or die – that would predictably have a long lasting profound negative impact on P’s mental health. If P were transferred to hospital in advance of labour (or in an emergency) that would also predictably cause her significant distress. In the judgment it was noted that this “may entrench her agoraphobia. It may damage or impair her bonding with her baby. It may give her long-term flashbacks. It may compromise her attitude to future pregnancies, or her dealings with persons in authority.”
One relevant factor for P’s best interests is the medical risks to her and her baby of the different proposed options. It seems clear that home birth (without the option of emergency transfer to hospital) would pose small but significant risks to P’s health. I earlier set aside the direct legal relevance of the interests of P’s unborn child. However, the health of the fetus/baby is relevant to P’s best interests in a different way. In the judgment it was mentioned that P “dearly wishes to give birth to a healthy baby, undamaged by the process of birth”. That strong desire would mean that the health of her child is relevant to her own interests.
Choice, human rights and childbirth in the Court of Protection
But the judgment did not to my mind completely settle whether option 3 (home birth with emergency transfer) would not be better still. The Official Solicitor (representing P) argued that it was not proportionate to sedate and restrain her in the absence of an emergency. An emergency occurring in labour would be unpredictable. That could obviously occur at any time of day or night. It may be more difficult to ensure that community psychiatric staff and staff with training in judicious restraint would be available. But it may be possible for some planning to occur. For example, trained staff could make themselves available to be called in an emergency. At the start of labour, midwives attending P in her home would potentially be able to pre-warn the ambulance service or community psychiatric staff. The judge referred to delays in a previous case in obtaining urgent court authorisation for restraint and emergency transfer. But that would not apply in this case, since the court was able to consider the issues in advance. There would inevitably be some increased medical risk in that plan. But it would also give P the greatest chance of being able to have a non-medicalised birth in her own home. Given that P does not have medical features that put her at particularly high risk of complicated home birth, it does seem to potentially be a reasonable compromise and the least restrictive approach to securing P’s interests.
Cross post from the Open Justice Court of Protection blog
For phobias, the relevant issue is not understanding or retaining or communication. It is weighing. Being unreasonable, giving excessive weight to one choice or making an unwise decision is not enough. For someone to lack capacity they must be unable to evaluate their choices. The issue is that a severe phobia can completely undermine an individual’s ability to weigh up the different considerations. Even thinking about the possibility of leaving the home could be enough to cause severe anxiety in someone with severe agoraphobia. If someone has a severe enough phobia, there is literally no consideration that could outweigh their fear.
The question then turns to whether it is in P’s best interests to have a home birth or to give birth in hospital.
Finally, one important consideration is P’s own wishes and values. Best interest decision-making for patients who lack capacity typically places a great deal of emphasis on the individual’s values, wishes, preferences and feelings (s. 4 Mental Capacity Act 2005). What weight then, should be placed on P’s desire for a home birth?
One question is whether home birth is more risky than hospital birth. Large studies indicate that women who plan to deliver at home and are at low risk of complications have lower rates of medical interventions in labour, slightly lower rates of serious bleeding, and similar rates of serious newborn illness. (There are few studies specifically focused on the risk of long-term disability in the child. There is some reason to be concerned that this rare risk is potentially increased in home births.) But those reassuring statistics are based on having the option of transfer to hospital in case of emergency. That occurs in between 1 in 10 to 1 in 3 home births. (In the case of P, a higher risk was cited in the courtroom – of approximately 1 in 2, with about 1 in 100 requiring emergency “blue-light” ambulance transfer. It is not clear the basis for that higher figure). If P were to develop a complication at home and were not able to be transferred to hospital, there would be a significant risk of harm. But harm to whom?
In other recent court cases (for example this one), patients’ long-standing desires about treatment were highly relevant, even though they were deemed to lack capacity. There could be patients with agoraphobia who also (for example), have a strong desire for a natural birth in their own home, avoiding medical intervention.
If P were to have a complication of childbirth there would be the risk of harm to herself. But there would also be the risk of harm to the baby and future child. Some jurisdictions and health systems have compelled women to have caesarean section for the sake of safeguarding the interests of the fetus. But in UK law, the interests of the fetus are not (directly) relevant to decision-making. The only considerations relevant are the woman’s capacity to decide, and, if she lacks capacity, her best interests.
At the conclusion of a three-day hearing, Mr Justice Holman declared that P lacked capacity to make the relevant decisions and ordered that it was lawful and in her best interests for medical staff to transfer her to hospital a few days before her estimated due date, and for medical professionals to offer her a choice of induction of labour or Caesarean Section in hospital. He also gave permission for the use of restraint, if necessary, in the event that she refuses to go to hospital voluntarily.
On the face of it, this looks like an extremely concerning infringement of a patient’s autonomy – a view that has been expressed by members of the public responding to media reports (e.g. see the blog post here). We normally think that adults should be free to make decisions about their medical care, including the freedom to refuse treatments that doctors are recommending. Decisions about place of birth and mode of birth are deeply personal decisions that can be hugely important for many women. For that reason, doctors and courts should be extremely loathe to infringe upon them.
The woman (call her ‘P’) has severe agoraphobia, and has barely left her home in four years. Her doctors believe that it would be best for her to deliver her baby in hospital. But P has an overwhelming fear of leaving her home and cannot agree to this. Their particular concern is that P might develop a serious complication during her home birth, need emergency transport to hospital, but be unwilling or unable to agree to this because of the severity of her phobia.
Re: An Expectant Mother [2021] EWCOP 33: A lawyer’s perspective
Is it justified in this case, then, to physically restrain P and treat her against her wishes? In particular, is it justified to do this pre-emptively, before a complication develops?
See links below for other blogs on this case over on the Open Justice COP blog:
Do phobias affect capacity? “Capacity” is the technical term for an individual’s ability to make decisions. The question is whether the person can understand information relevant to the decision, whether they can remember it, whether they can weigh up the pros and cons, and whether they can communicate their decision (s. 3 Mental Capacity Act 2005).
There can be rare situations where it is in a woman’s best interests to give birth in a place or via a mode of birth that is contrary to her strong preferences. But whether it is ethically justified in P’s situation, remains – for me at least – an open question.
Agoraphobia, pregnancy and forced hospital admission: Public responses to media reports
Mr Justice Holman concluded that option 2 (planned hospital birth) better promoted P’s interests than option 1 (home birth without transfer).
There were two main options considered. The first was for P to give birth entirely at home, even if complications were to develop (unless in that circumstance she changed her mind and agreed to transfer). The second – the option endorsed by the judge – was for P to be transferred to hospital in advance of labour to give birth in hospital. (For this blog I will not discuss the further question of the choice of mode of birth, i.e. waiting for natural labour versus induction of labour versus caesarean section).
By Dominic Wilkinson,
Mild forms of ‘phobia’ (for example, fear of heights, needles or spiders) are extremely common (one estimate is that they affect 10 million people in the UK). But to be diagnosed with a phobia, that fear must be excessive or unreasonable, persistent and intense. Severe phobias can be incredibly debilitating.
In P’s case, it was apparently accepted, without argument, that P lacked capacity to make decisions about delivering in hospital or at home. (She was also reported to have problems affecting her short-term memory and ability to “manage and process complex, multifaceted information”). Mr Justice Holman’s view was that, in this case, P’s desire for a home birth was entirely as a consequence of her agoraphobia. “The mother herself says that she would prefer to give birth at home, but she clearly expresses that that is due to her agoraphobia and fear of going out. I am satisfied that, but for her agoraphobia, the mother herself would opt for a hospital birth,” (para 22). Without further information about P, it is difficult to evaluate this claim. But even if some weight were given to P’s desire for a home birth, the further question would be how to reconcile potentially conflicting wishes. P also strongly wishes for her baby to be healthy. Best interests judgments by their very nature require a complicated weighing process. There is no simple or mathematical way of balancing competing considerations, and different people may reach different conclusions (because of varying assumptions about the probability of different outcomes, or the weight placed on different values). One of the values of the Open Justice Court of Protection Project is the support it provides for observers to watch hearings, hear evidence themselves, and to better understand how the final balancing was reached. (That was not possible in this case.)
Human rights in maternity and the Court of Protection
A third option, would be for P to attempt to have a home birth and to be transported to hospital (potentially using sedation or restraint if necessary) if a complication arose.
In a case in the Court of Protection last week, a judge authorised the use of force, if necessary, to ensure that a young woman gives birth in hospital rather than at home.