By Celia Kitzinger, 21st September 2021
The right of a competent adult to refuse medical intervention – even when that refusal will be followed by death – is accepted as a fundamental principle in England and Wales (and in many other jurisdictions).
In theory, this principle applies equally to pregnant women.
When pregnant women’s wishes have been over-ruled in the Court of Protection, it’s been because they have been deemed not competent to make their own decisions, i.e. to lack the capacity to understand, retain, or (most often) weigh up information relevant to the decision that needs to be made.
We’ve published blogs about such cases before. In a case this year before Mr Justice Holman (back in May 2021), a woman with agoraphobia who wanted a home birth was deemed not to have capacity to make decisions about the location of the delivery of her baby. The court ordered that it was in her best interests to be conveyed to hospital (with restraint if necessary) before her due date and to be induced or to have a caesarean section. This led to some criticism in the media as well as from birth rights activists and some midwives, amongst others. (See also this blog about a court-authorised caesarean section for a woman with schizophrenia.)
Criticism of these decisions often comes from a suspicion that when pregnant women make “unwise” choices about their pregnancies, or their mode or place of delivery – especially choices that might risk the health or life of their foetus – the finding that they “lack capacity” is a ruse to enable clinicians to override their autonomous choices.
So the case I observed – an urgent application before Mr Justice Moor in the Royal Courts of Justice (via MS Teams) – was interesting since it also concerned court-ordered obstetric intervention, contrary to the stated wishes of a pregnant woman, but in this case she was (eventually) found to have the capacity to make the relevant decisions for herself.
At the time of the hearing I observed, a woman in her 30s (P) is 37-weeks pregnant and already has two young children, both born in hospital after “normal deliveries”.
Both her previous labours were induced at 39 weeks following diagnoses of obstetric cholestasis which was confirmed by blood tests during both pregnancies. It’s pretty likely that she will have this condition again, but she’s refusing to allow health care professionals to take blood samples for testing as this would go against her newly-acquired religious beliefs.
Another reason why health care professionals want to do blood tests is that P has a rhesus negative blood type. If the baby is rhesus positive, antibodies could pass to the baby and cause Fetal Rhesus disease. The treatment for this condition is Anti-D (a blood product) which she has also declined.
Doctors are also concerned about the clinical need for administration of blood or blood products during or after labour in the event of a major obstetric haemorrhage.
Although P has consented to a number of obstetric interventions, and the Trust considers that she has capacity to do so, she’s refusing all interventions involving blood products.
The Trust was applying to court for:
- declarations that P lacks capacity to consent to medical investigation by blood tests and treatment by means of a blood transfusion and/or use of blood products.
- declarations and orders that it is lawful and in P’s best interests, if necessary, that she undergoes blood tests and that she is administered a blood transfusion and/or blood products if clinically indicated.
Counsel for the applicant Trust was Francesca Gardner. Counsel for P, via the Official Solicitor, was Sophia Roper – and the pregnant woman at the centre of the case also joined the hearing in person from her hospital ward.
It was clear from the position statements issued by the Trust and by the Official Solicitor before the hearing started that they disagreed on key issues.
The position of the Trust
According to the Trust, P is exhibiting various symptoms of mental disorder, and is diagnosed with “a manic episode with psychotic features”, “hypomania” or “persistent delusional disorder” (although I understand that no supporting evidence of P’s diagnosis was included in the bundle). She’s currently detained in hospital under the Mental Health Act 1983 and prescribed 12.5 mg of Olanzapine, an antipsychotic medication.
The treating clinicians considered that P lacks capacity to make decisions about these medical interventions on the grounds that she has “delusional beliefs” that render her “unable to weigh up the risks and benefits of refusing blood tests and blood products because her decision making around this is driven by a delusional belief system and new intense religious beliefs in the context of her mental illness”.
The Trust added:
“During her previous two pregnancies (when capacitous), P consented to the interventions and may well consent in the event that her medication starts taking effect prior to delivery. However, in the event that P was to go into labour whilst still holding delusion (sic) beliefs, the clinicians are of the strong view that it is in her best interests for the necessary medical investigations and interventions relating to the taking of blood and administration of a blood transfusion and/or blood products to take place to ensure the safety of her and her baby.”
The position of the Official Solicitor
The Official Solicitor’s position was that there’s no evidence that P lacks capacity to conduct the proceedings, nor is there sufficient evidence about her capacity to make medical decisions to rebut the presumption of capacity.
The Official Solicitor accepted appointment as P’s litigation friend on a provisional basis (pending assessment of P’s capacity to conduct her own litigation).
She described P as:
“… a deeply religious woman who is currently refusing to follow a small number of medical recommendations (she is otherwise accepting of all proposed treatment) because of her religious beliefs; her interpretation of the Bible is that she is not permitted to either accept or give blood; she therefore declines either to have blood tests (should they be required) to accept a blood transfusion or any other blood product. P’s Article 9 rights under the E[uropean C[onvention] on H[uman] R[ights] are engaged, since the Trust seeks to force treatment on her which is contrary to her religious beliefs.”
“The Official Solicitor observes that P is considered capacitous [by her treating clinicians] in all the areas in which she is willing to take that [medical] advice; it is only where she is not willing to follow medical advice that she is considered to lack capacity”.
And the Official Solicitor quoted from a previous judgment by Peter Jackson J:
“The temptation to base a judgement of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided. That would be to put the cart before the horse or, expressed another way, to allow the tail of welfare to wag the dog of capacity. Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions. Many who suffer from mental illness are well able to make decisions about their medical treatment, and it is important not to make unjustified assumptions to the contrary.” (Heart of England NHS Foundation Trust v JB  EWHC 342 (COP) at )
This is also P’s own point of view. She appeared in court and said she does not have a mental illness and that she has capacity to instruct her own legal team and does not need the involvement of the Official Solicitor. Her beliefs concerning blood are, she says, valid interpretations of the Bible, and she is fully able to understand the decisions she is making.
A solicitor, an agent for the Official Solicitor, had met with P two days before the hearing and submitted a witness statement suggesting that P has both litigation and subject-matter capacity.
The Official Solicitor was therefore asking the court to direct that an independent expert should be instructed to determine whether or not P has capacity to conduct this litigation and to make her own decisions about blood products (and – if not – where her best interests might lie). She had urgently enquired as to the availability of a psychiatrist able to carry out a assessment and found one able to do and provide a report within a week.
The Official Solicitor considered it would be “premature and potentially cause significant injustice to proceed with a final hearing” on that day – more than two weeks before P’s due date and that the final hearing should be deferred until the independent report was ready.
The hearing started almost half an hour late because, with the judge’s permission, the parties had engaged in “productive discussions” about the way forward, and had drafted an agreed order. It was also a very short hearing – just 40 minutes.
Instead of a final hearing today, an independent expert would be appointed to assess P’s capacity in two areas: (1) her capacity to conduct this litigation, instructing her own solicitor rather than relying on the Official Solicitor (as she said in court she wanted to do); and (2) her capacity to make her own decisions about interventions involving blood products.
If P has capacity to make her own decisions about blood products, then the court has no jurisdiction.
The judge agreed that there was “insufficient evidence before the court today” to make the declarations and orders requested by the applicant and arranged for another (final) hearing 10 days later.
There was some discussion about what would happen if P went into labour in the next 10 days – but she hadn’t had early labours with the two previous children and there was no reason to think that she would on this occasion either. If that were to happen, the Trust could make an urgent application to the court. The judge declined to make the interim declaration the Trust seemed to hope for, to the effect that if P were to go into labour before the final hearing then blood products could be given in her best interests: “the point about the jurisdiction of the court really trumps everything, doesn’t it”, he said.
I delayed writing about this hearing, hoping to be able to attend the final hearing and report on the outcome of the case. But that never happened.
The next hearing was vacated.
On enquiry, I was told that this was because the proceedings concluded by consent on the basis that P was found to have capacity to make the relevant decisions.
I don’t know what decisions P made – but clearly, they were hers to make. The Trust had speculated that P might regain capacity to make the relevant decisions before going into labour as she was “fully compliant with her prescribed antipsychotic medication”. Perhaps by the time she was assessed by the psychiatrist she had agreed to administration of a blood transfusion or blood products if they were medically necessary. Or perhaps, she continued to refuse blood products and was deemed capacitous nonetheless. Either way, I hope the labour went well and that mother and baby are flourishing.
This hearing showed the importance the Official Solicitor attaches to the presumption of capacity, and the danger of treating “unwise” decisions as evidence that a person may lack capacity. That’s reassuring.
It was also reassuring to see the Official Solicitor’s commitment to protecting religious freedom.
But it’s quite frightening to see how clinicians can so readily treat someone refusing treatment as lacking capacity – in the absence of any convincing evidence they were able to present to the court.
Obviously it’s hugely distressing to medical practitioners when a capacitous pregnant patient refuses medical treatment that aims to support her own or her foetus’s well-being – as in this harrowing description of the avoidable death of a pregnant Jehovah’s Witness and her baby.
But compelling treatment of pregnant women and overriding women’s rights is not an option.
Pregnancy does not constitute an exception to the principle that a capacitous adult has the right to refuse medical treatment.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets as @KitzingerCelia