University Hospitals of Derby And Burton NHS Foundation Trust v J (Medical Treatment: Best Interests)



Judge: Williams J

Citation: [2019] EWCOP 16

Summary

This case concerned the question of whether it was in the best interests of a woman, identified as ‘Anne,’ to undergo a hysterectomy and bilateral salpingo-oophorectomy and a colonoscopy, including a transfer plan including sedation and a level of deception to ensure her presence at hospital for the procedures to be undertaken.

Anne had a diagnosis of autistic spectrum disorder and a severe learning disability. The evidence before the court was that when she started menstruating as a teenager her monthly cycle had affected her behaviour and mood, which had in turn restricted her lifestyle. She was very upset at the sight of blood, and her distress manifested itself in various forms which the judge did not set out in the judgment as being highly personal and sensitive. In addition, the hormonal changes (linked to the production of progesterone) prompted an increase in her aggressive and challenging behaviour.  Anne lived at home with her mother and father.

Over the years, her treating consultants had tried a range of treatments, including oral contraceptives, and an IUD. These helped stabilise the problem but ultimately failed, and Anne had experienced severe crises in her mental health in 2010 and 2012. She was said to remain fearful about this experience.  She had been started in 2012 on 3 monthly injections of Decapeptyl which suppresses normal hormonal activity including menstruation. It is licensed for 6 months’ use, but Anne had been on it far longer. As Williams J noted, it is known to cause osteoporosis and the effects of its long-term usage are unknown. Because of that risk Anne was tried on an alternative medication following a minor operation, and this was drastically unsuccessful, with Anne experiencing severe side effects including psychosis and violent aggression, as well as vertigo. She returned to Decapeptyl use. This involves injections being given every 3 months by her GP at home. These had been reasonably successful in preventing menstruation (and so the linked distress that Anne experienced) and have moderated her behavioural difficulties, albeit her parents believed that when the medication was starting to wear off, she became more aggressive. However, Anne was said to find the injections extremely distressing, both in advance and during their administration. In addition to these symptoms, Anne was also found to have endometriosis, and severe abdominal pain related to going to the toilet. This might be indicative of large bowel upset, although it could be linked to endometriosis. Testing had suggested an inflammation of the bowel which might be caused by a disease such as Crohn’s or ulcerative colitis, requiring further investigation.

Since about 2015 Anne had been unwilling or unable to travel out of her home save on very rare occasions, for instance when she was in such pain from a tooth that she willingly travelled to hospital. However, she suffered from vertigo, which appeared to be exacerbated by travel. On one occasion she struck her father and attempted to leave the moving car, and her distaste for travel by vehicle had now become more embedded. She would not willingly go on a journey in a vehicle, whether car or ambulance. Shortly prior to the application, when she was experiencing severe abdominal pain, she did agree to an ambulance being called, and thus it is possible that, if in sufficient pain, she might agree to travel by vehicle, but otherwise it was likely that she would not. On one occasion she insisted on walking 9 miles home from hospital because of her aversion to travel in a vehicle.

An issue of a hysterectomy has been discussed at various times over the years; it had initially been rejected by her parents and her treating doctors for various reasons, including the effect on her fertility. Anne’s consultant obstetrician and gynaecologist since 2014 had ultimately concluded that a hysterectomy is the last realistic option given that Decapeptyl injections could not be used long-term.

There was unanimity between all before the court as to the order to be sought, the Official Solicitor noting that:

23 […] this is significant life changing surgery which will impact profoundly upon Anne’s personal autonomy, bodily integrity and reproductive rights. Nevertheless, he supports the gynaecological intervention (and other interventions) as being in her best interests and thus lawful. They are necessary and proportionate interferences with her rights. The medical and other evidence in support of these conclusions on best interests is clear. In relation to Anne’s ability to bear children, the Official Solicitor notes that this is a theoretical rather than real loss, because as a result of her lack of capacity to consent to sexual relations she will not bear children and is most unlikely ever to be able to parent a child. The Official Solicitor notes that Anne is herself unable to express a clear view about the operation. She has indicated that she does not want to have menstrual bleeding or a child.

Williams J noted that:

  1. Section 4(6) requires that in evaluating ‘best interests’ I consider past and present wishes, beliefs and values that would be likely to influence Anne’s decision if she had capacity and the other factors she would be likely to consider if she were able to do so. The evidence demonstrates that Anne approves of medical treatments which relieve her of pain and distress; her overcoming her dislike of travel to attend to her dental problems and her support for an ambulance being called when recently in severe pain illustrate her approach.

Williams J concluded that:

  1. The overall balance in the evaluation of Anne’s best interests is overwhelmingly in favour of the proposed HBSO, the colonoscopy and the care plan which will facilitate those surgical procedures being undertaken. The medical evidence both from the treating clinicians and also, and highly significantly, from one of the country’s leading experts in the field is compelling. That it happens to be aligned with the views of Anne’s parents is fortunate but no coincidence. The parents’ experience – and they know their daughter best of anybody – is of course the human perception or experience of matters which are ultimately rooted in medical science, as confirmed by the treating clinicians and Professor O’Brien.

In terms of sedation and deception, Williams J had already noted that:

iv) Given Anne’s aversion to leaving her home and travelling by vehicle and the distress and behavioural challenge that getting her to hospital would present, it is plainly in her best interests that a plan is implemented which both enables her to undergo the HBSO and the colonoscopy and which minimises the impact on her of so doing. If that requires both a level of deception and the use of sedation, that is clearly in her best interests; the means is completely justified by the end.

Williams J continued:

  1. As Anne’s parents noted, it is unfortunate (to say the least) that it has taken so long to reach this point for Anne. The statement prepared by Anne’s mother and endorsed by her father provides a vivid picture of the consequences for Anne and those around her, most particularly her parents, of the difficulties associated with her menstrual cycle. That Anne and her parents have had to contend with those difficulties for so long and with such consequences for Anne and for those around her is profoundly regrettable. The pressure which the family have been living under is plainly taking its toll on Anne’s parents but their devotion to her is self-evident and remarkable. Many might have succumbed but they have put their daughter’s interests above any other; particularly their own. Anne and her family live every day with the consequences of her severe learning disability and autism and any step which makes life better for her and thus for her family should be implemented as rapidly as possible. If there is any lesson to be learned for the future from Anne’s case, it seems to me it is that the human cost to the individual and their family should never be underestimated, even when dealing with what for the vast majority of the female population is part and parcel of womanhood. For an individual such as Anne, that biological reality has translated into a truly debilitating and distressing condition. The true welfare of the particular individual (which encompasses not just medical welfare) must not be obscured by other considerations, which might be fundamental to the vast majority of women but which are displaced by other considerations for that individual.

In terms of whether the application had to have been brought to court, Williams J noted that:

  1. It is entirely right that cases such as this, where medical decisions and the plan for their implementation impact so profoundly on P’s personal autonomy, bodily integrity and reproductive rights, should be considered by the Court of Protection at High Court level, and as this case demonstrates, once in the hands of the court and the Official Solicitor they can be dealt with rapidly.

Comment

Decisions concerning reproductive rights are always – rightly – intensely sensitive, and fact-sensitive.  In this instance, Williams J had before him a clear body of evidence establishing that, in this case, it was in her best interests to undergo the procedures, including by way of sedation and deception.

It is, perhaps, unfortunate that, whilst Williams J identified that it was “right” that Anne’s case and those such as it should come to court, he did not specify what “right” meant.  In NHS Trust v Y [2018] UKSC 46, the Supreme Court made clear that obligations to bring cases to court have to be spelled out of either common law, statute or the ECHR; considerations (for instance) of “good practice” cannot suffice.  In  Re P [2018] EWCOP 10 Baker LJ came closer to spelling out an obligation in a closely related area, namely the covert insertion of a contraceptive device, on the basis that:

given the serious infringement of rights involved in the covert insertion of a contraceptive device, it is in my judgement highly probable that, in most, if not all, cases, professionals faced with a decision whether to take that step will conclude that it is appropriate to apply to the court to facilitate a comprehensive analysis of best interests, with P having the benefit of legal representation and independent expert advice.

However, not least to assist the revision of the Code of Practice to the MCA, it would be of huge assistance were either the Official Solicitor to argue or the Court of Protection of its own motion to address in the next case on what legal basis it is “right” (as it undoubtedly is) to require such a case to come to court.  It would undoubtedly be possible to identify such a requirement out of the implied procedural protections contained in Article 8 ECHR, construed (if necessary) by reference to the CRPD;[1] it would undoubtedly be very helpful if this could be made express in domestic case-law.

[1] See, by analogy, the discussion in Alex’s article on “Powers, defences and the ‘need’ for judicial sanction.”

CategoryBest interests - Medical treatment Date

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