Re E (Medical treatment: Anorexia)  EWHC 1639 (COP) – Read judgment
Update | In an earlier version of this post a question was raised by the author concerning the implications of funding restrictions within the department of the Official Solicitor for cases similar to E’s. The author is happy to make clear that no criticism is made of the actions of the OS in this or indeed any other case in the judgment of Peter Jackson J or in this post.
Mr Justice Jackson has ruled that it would be lawful and in the best interests of a 32 year old woman (referred to in the judgment as “E”) for her to be fed, using physical force or chemical sedation as necessary, for a period of “not less than a year”.
The judgment has sparked considerable press attention, and is also reported to have drawn criticism from Rochdale Lib Dem MEP Chris Davies. Against that background, this post intends to offer a modicum of analysis as to what was decided, why and what lessons the case holds for the future.
The applicant, a local authority, applied to the Court of Protection as to whether E, who suffers from extremely severe anorexia nervosa and other chronic health conditions, including alcoholism, had the capacity to refuse life-sustaining treatment, including feeding. Further, the court was asked to rule on whether two attempts in 2011 by E to make binding advance decisions refusing treatment were themselves valid. If the answer to both of these questions was negative, the court was to determine whether the proposed treatment of force-feeding, which itself carried heavy risks “not excepting a risk to life”, was in E’s best interests.
Tragic and harrowing
A brief summary of the facts cannot hope to capture all the complexities of this tragic and harrowing case. E had suffered from anorexia since her early teens, brought about by serious sexual abuse which she experienced between the ages of 4 and 11. Despite the challenges of her illness, she was universally described as intelligent and articulate and had completed several years of a medical degree at university before her illness rendered it impossible to continue. She had undergone a number of admissions for medical and psychiatric care, including Mental Health Act sectioning on about 10 occasions. In July 2011 E signed a document saying that she did not want to be resuscitated or to be given any medical intervention to prolong her life.
In October 2011, she signed another advance decision in a standard form, assisted by her mother and her mental capacity advocate. On the same day she was detained under section 3 of the Mental Health Act (MHA) 1983. Following her discharge and return to the community, a familiar pattern re-asserted itself. By early 2012 E was drinking very heavily. She was re-detained in March 2012 and was initially fed by tube but opposed this and tube feeding was stopped. As a result, she has not been taking any calories at all since the end of March. On 20 April 2012 E was admitted to a community hospital for palliative care and placed on an ‘end of life’ care pathway with high doses of opiate medication, to which she is physically addicted.
The court was required to determine whether E currently had the capacity to make decisions about her treatment. In doing so, it applied the provisions of the Mental Capacity Act 2005 which provided that E would lack capacity if at the material time she is unable to make the treatment decision for herself because of an impairment of, or a disturbance in the functioning of, the mind or brain. The judge determined that a combination of E’s obsessive fear of weight gain (which made her incapable of weighing the advantages and disadvantages of eating in any meaningful way) and her current condition in which she is now subject to strong sedative medication, meant that currently E lacked the capacity to make the decision to refuse treatment.
In the light of its finding that E currently lacked capacity, the court was required to determine whether the purported advance decisions made in 2011 were valid and binding decisions to refuse treatment in the present circumstances. The judge considered (at paragraph 55) that
“for an advance decision relating to life-sustaining treatment to be valid and applicable, there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time. Where the evidence of capacity is doubtful or equivocal it is not appropriate to uphold the decision.”
In relation to the July 2011 document, the judge was clear that E lacked the capacity to make an advance decision at that time, in part owing to E being placed under compulsory section under the MHA shortly after the document was signed and observations made by her treating psychiatrist that she was not expressing a consistent and capacitous wish to die.
In relation to the October 2011 document, the decision was more nuanced but again the judge held that E had not had capacity to make the advance decision at that time. A formal assessment of capacity was lacking and it was significant that E was admitted under section the same day. Peter Jackson J found (at paragraph 65) that
“Against such an alerting background, a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision would in my view be necessary. No such assessment occurred in E’s case and I think it at best doubtful that a thorough investigation at the time would have reached the conclusion that she had capacity.”
The implications of this decision on the validity of advance decisions or ‘living wills’ more generally has already generated some comment and is likely to continue to do so.
Having determined that E did not have capacity to refuse treatment either currently or at the time she attempted to make advance decisions about her treatment, the judge went on to consider whether the proposed course of treatment would be in her best interests. The judge set out a wide range of considerations, including the risks of the treatment, E’s likely prognosis even if she survives and her past and present wishes. Particular attention was paid to the views of E’s parents and treating clinicians. The moving evidence of E’s parents, who had lived through E’s difficulties at every stage, was that they felt their role “should now be to fight for her best interests, which, at this time, we strongly feel should be the right to choose her own pathway, free from restraint and fear of enforced re-feed … For us it is the quality of her life and not the quantity. We want her to be able to die with dignity in safe, warm surroundings with those that love her.”
In a careful decision, considering the factors in favour and against the proposed course of treatment as well as the principles enshrined at Articles 2, 3 and 8 of the Convention, the judge considered (at paragraph 140) that
“the balance tips slowly but unmistakably in the direction of life-preserving treatment. In the end, the presumption in favour of the preservation of life is not displaced.”
Lessons to be learnt
All cases in the Court of Protection are unique on their facts and must be decided accordingly. However, the present case raised the novel situation of the possibility of life-sustaining treatment not being in the best interests of a person who, while lacking capacity, is fully aware of her situation. E was described as “in many ways the opposite of a PVS patient or a person with an inevitably fatal condition.” As such, the decision may be seen to have broken new ground, albeit in an area which is acutely fact-sensitive.
Perhaps the most important message from the judgment is that applications of this kind, in particular to determine the validity of advance decisions, should be made as early as possible. The damaging effects of delay in bringing this matter before the court can be seen in the present case. To recap, E had made purported advance decisions in July and October 2011. After various hospital admissions, she had not taken any calories since March 2012. On 20 April 2012 E was admitted to a community hospital for palliative care and placed on an ‘end of life’ care pathway. On 18 May (i.e. some 4 weeks into the palliative care pathway) the local authority made its application to the court. Directions (for the filing of evidence etc.) were given by the court that day.
The matter then came before a judge on 25 May (a Friday). At the end of the first day of the hearing, the judge was invited to make an order that E be moved to an intensive care unit, so that she could be fed to ensure that she did not die over the weekend. This was not supported by E’s parents. The judge declined to make an interim declaration, giving as his reasons that he did not consider it right to embark down the road of forcible feeding without knowing what long-term resources were available and how any programme was to be carried out; nor was he prepared to take that step ahead of a decision as to whether such a course would be in E’s best interests overall. The hearing concluded on 28 May at the end of which the judge gave his decision with brief reasons, with fuller written reasons to follow.
In his written reasons, the judge comments critically (at paragraph 40) on the timing of the application, finding:
“E’s case should have been brought before the court long before it was. Her condition has been seen by those treating her as raising an ethical predicament since at least 2009, if not before. As long ago as July 2011, the health authority considered referring the matter to the court in the context of doubts over the validity of E’s advance decision. Apart from anything else, an earlier application might have allowed E herself to participate directly in the proceedings if she chose; as it was, her condition at the time of this hearing meant that this was not possible. It has also meant that the question of treatment has only been brought forward several weeks after E embarked down the palliative care pathway.”
As E’s parents commented in their evidence, some may view it as “inhumane” to bring into question E’s decision to refuse feeding, at a time when she and those around her were psychologically adjusted to the prospect of her imminent death.
The judge was also critical of a failure, no doubt contributed to by the lateness of the application, to inform the court at an early stage of the actual, practical possibilities for treatment. This was essential in order for the court to avoid being “drawn into theorising”.
It seems to the author that the real question that should be asked following this judgment is not whether the judge got it ‘right’, given the impossibility of informed comment on that point in the absence of a full appreciation of all the evidence, but rather, why was this application brought so late? Are local authorities properly resourced to intervene in these situations? Are clinicians appropriately aware of the need to highlight these issues at an early stage? These are by no means new questions. A separate question, highlighted by the facts of E’s case, is whether sufficient expertise and resources exist for the treatment of this debilitating condition.
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