Judge: Peter Jackson J.
Citation:  EWHC 1639 (COP)
Summary: E was a 32-year-old intelligent and articulate woman who had studied to be a doctor. Suffering from severe anorexia nervosa, emotionally unstable borderline personality disorder, alcohol and prescribed opiate dependency, she had not eaten any solid food for over a year and had not taken any calories for the last two months. She had previously been detained under the Mental Health Act 1983 (‘MHA’) on around 10 occasions in the past 6 years, and had twice attempted to make an advance decision to end her life. The care team and her parents unanimously decided that all treatment options had been exhausted and that it was in E’s best interests to die in comfort under a palliative care regime:
‘It upsets us greatly to advocate for our daughter’s right to die. We love her dearly but feel that our 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. We feel that she has suffered enough. She stands no hope of achieving the things that she would value in her life and shows no signs of revising these aspirations. We would plead for E to have some control over what would be the last phase of her life, something she has been denied for many years. 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.” (paragraph 80)
Five weeks along E’s end of life pathway, the matter was suddenly brought before the Court of Protection. A week before the hearing, upon discovering that legal proceedings were underway, E tried to hang herself from an emergency cord in a bathroom. With a body mass index (‘BMI’) of just 11.3, her death was imminent. The hearing began on a Friday. A request for an interim Order to force feed her over the weekend to ensure that she did not die was refused as insufficient information about the longer-term proposals was available. Still alive on the Monday, whether E was to be forced to live or allowed to die was in the hands of Mr Justice Peter Jackson. His Lordship had to determine three questions:
(a) Did E currently have the mental capacity to make decisions about her treatment?
(b) If not, did she have mental capacity when she made an advance decision in October 2011, and was that decision valid and applicable?
(c) If she currently lacked capacity and had not made a valid advance decision, was it in her best interests to receive life-sustaining treatment in the form of forcible feeding with all necessary associated measures?
A. Currently Lacked Capacity
Peter Jackson J found that E did not seek death but saw her life as pointless and wanted to be allowed to refuse food in the knowledge that death would result. Although she could understand, retain relevant information and communicate her decision to refuse to eat, her obsessive fear of gaining weight made her incapable of meaningfully weighing the advantages and disadvantages of eating: ‘the compulsion to prevent calories entering her system has become the card that trumps all others. The need not to gain weight overpowers all other thoughts’ (para 49). Her incapacity also derived from the strongly sedating ‘drug haze’ that was being prescribed as part of her end of life care pathway, together with her severely weakened condition.
B. Formerly Lacked Capacity
E’s first purported advance decision in July 2011 was made at a time when at least one doctor believed that she had capacity. Signed by E and countersigned by her mother it stated: “I do not want to be resuscitated or given any medical intervention to prolong my life”. Days later E was detained for treatment under s.3 of the 1983 Act and PEG fed. Given the confusion amongst the medical, social work and legal professionals as to her capacity, together with her parents’ expressed doubts as to her true intentions at that time, the Judge decided that she lacked capacity to make a valid advance end of life decision.
Over the coming months, to maximise her chances of being found to have capacity, E reluctantly complied with the PEG feeding and her BMI peaked at 15 by October 2011. This time with legal advice, she signed another advance decision witnessed by her mother and an independent mental health advocate. It stated that, if close to death, she did not want tube feeding or life support but would accept pain relief and palliative care. It also read: “If I exhibit behaviour seemingly contrary to this advanced directive this should not be viewed as a change of decision.” That day, E was again detained for treatment under s.3 of the MHA.
The Judge held that this October advance decision satisfied all of the legal formalities required by s.25 of the Mental Capacity Act 2005 (‘MCA’). His Lordship also noted that the general medical view at the time was that she had capacity to make it. However, no ‘formal’ capacity assessment had been undertaken and the 1983 Act had been invoked that same day:
‘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.’ (paragraph 65)
Peter Jackson J held that it was at best doubtful whether a thorough investigation at the time would have reached the conclusion that E had capacity. Moreover, she may also have lacked capacity in relation to the associated treatments, such as mechanical ventilation, which might be necessary. As a result, both currently and at the time of her advance decision in October 2011, E was held to lack capacity to accept or refuse treatment in relation to any interventions that were necessary in conjunction with forcible feeding.
C. Best interests
The Court had two extreme options from which to choose. At one extreme, the professionals could continue to provide care and pain relief until E died of starvation. At the other extreme was an immediate transfer to the country’s leading eating disorder facility where E would be stabilised, fed via nasogastric tube or a PEG tube inserted through her stomach wall. Any resistance would be overcome by physical restraint or chemical sedation. It was envisaged that such a process of re-feeding was likely to take a year or longer, after which E would be offered therapy.
His Lordship sensitively addressed the best interests considerations, noting the risks of re-feeding syndrome and immediate mortality resulting from the insertion of the PEG line; only a 20% chance of recovery; and E’s past and present wishes and feelings, beliefs and values. Her loving parents had grave misgivings about, but not fierce resistance to, the intervention, stating that they could only support it if appropriate treatment for both her anorexia and alcoholism was available. E’s consultant gastroenterologist told the Court: ‘Re-feeding E takes a prolonged period of time with significant mental distress to her. She has told me it feels like reliving the abuse she suffered as a child approximately four times every hour.” (para 107). The Court-appointed expert reiterated this:
“Treatment regimes enforcing weight gain appear, to the outsider, somewhat barbaric. The categorical refusal to ingest calories can only be met with forcible feeding either under physical or chemical restraint. This is harrowing for any patient, but particularly for one who was subjected to extensive childhood sexual abuse.” (paragraph 87)
The expert felt that E’s statements were ambivalent; “E does not want to eat. I don’t think she wants to die.” And his instinct was that she was detainable for treatment under the Mental Health Act 1983. Her consultant psychiatrist confirmed that he would abide by the Court’s decision and would participate in placing E under section to ensure the treatment was carried out.
Carefully weighing the respective advantages and disadvantages of the two options, the Court noted that, ‘At its simplest, the balance to be struck places the value of E’s life in one scale and the value of her personal independence in the other…’ (para 118). Moreover, ‘All human life is of value and our law contains the strong presumption that all steps will be taken to preserve it, unless the circumstances are exceptional.’ (para 119). But this principle was not absolute and his Lordship did not accept the proposition ‘that one can only be certain about E’s best interests if every possible solution has been tried and shown to fail.’ To do so would risk discriminating against incapacitated persons by depriving them of options available to the capacitous (para 134). However, on balance, the Court decided that it was in E’s best interests to be fed, by force if necessary, and that the resulting interferences with her Article 8 and 3 rights were proportionate and necessary to protect her right to life under Article 2 (para 141).
Comment: The ethical and legal issues arising from this tragic case will no doubt be widely debated for some time to come. And it is difficult to do justice to that debate in this brief comment. With respect to his Lordship, the judgment does not contain any significant legal developments, although the requirement for ‘a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision’ – in addition to the legal formalities required by MCA s.25 – is noteworthy.
Although E’s right to life was discussed, no express reference was made to Rabone v Pennine Care NHS Foundation Trust  UKSC 2. The positive operational duty to save life, which would most likely have been triggered on the facts, would require the professionals involved and the Court to do all that could reasonably be expected to minimise the real and immediate risk to E’s life. In deciding what would be reasonable, however, consideration would have to be given to the ease or difficulty of saving her life, the resources available, and, ‘There is a difficult balance to be struck between the right of the individual patient to freedom and self-determination and her right to be prevented from taking her own life’ (Rabone at para 117). A careful balance clearly was struck which differed from that of the care team and E’s parents.
It is also interesting to compare the saving of E’s life with the death of Kerrie Wooltorton. For those unfamiliar with her case, Kerrie was 26-years-old, diagnosed with borderline personality disorder and would typically attempt suicide by ingesting antifreeze before accepting life-sustaining treatment. Three days after preparing an advance decision, which incidentally would have fallen foul of MCA s.25, she swallowed antifreeze for the final time, called an ambulance and, on the hospital ward, accepted pain relief but refused renal dialysis. Assessed as having capacity, her decision was respected and she died.
Both E and Kerrie had made fatal decisions which their health professionals considered to be capacitous. Both had a history of being compulsorily detained and treated under the 1983 Act. But E’s case was referred to Court and her life was compulsorily saved; whilst in Kerrie’s case no legal proceedings were initiated and death resulted.
Finally, we should note a matter of some importance that is not referred to in the judgment. We are grateful to Richard Jones for pointing this apparent omission out and Paul Bowen QC for providing the following details (and can confirm that we are permitted to refer to them). On the face of the judgment, there is no reference to the fact that the steps required would almost inevitably lead to a deprivation of E’s liberty, but we can confirm this was considered, and steps taken to authorise it.
It was understood by those before the Court that, once the initial steps had been taken to re-feed and stabilise E, the professionals involved would apply to detain her under the Mental Health Act 1983. Until such provision for detention could be put in place, the Court made the following Order:
“Any reasonable and proportionate measures used in relation to the provision of artificial nutrition and hydration which have the effect of depriving E of her liberty shall be authorised by the Court pursuant to MCA 2005 s 16 and s 48.”
If E was not compulsorily detained under the MHA within a limited period of time, the matter was to be brought back to the Court of Protection for a further hearing. At the time of writing, it is not known whether or not E is under section.
Ineligibility anoraks will immediately recognise the potential problem: if E is not detained under the MHA, she risks falling into the amended Bournewood gap. By virtue of MCA s.16A, the Court of Protection cannot authorise a person to be deprived of their liberty if they are, or they become, ineligible. At the risk of overly simplifying MCA Schedule 1A, E would be ineligible for DOLS and a s.16 Order if she was an objecting mental health patient who “could” be detained under ss.2 or 3 of the MHA (for a more detailed analysis see Allen, ‘The Bournewood Gap (as amended?)’ (2010) 18 Medical Law Review 78). Assuming, as one must, that treatment cannot be provided under the MCA, it would appear that an application “could” be made to detain E under MHA s.2 or, depending on the views of her nearest relative, under s.3. In deciding then whether she “could” be detained in hospital in pursuance of such an application, we must assume that two medical recommendations under the MHA have been given. So, in short, it appears likely that E will be within the scope of the MHA.
The next issue is whether she is an objecting mental health patient. Naso-gastric feeding has been held to amount to ‘medical treatment for mental disorder’ in respect of those with anorexia (Re KB (Adult)(Mental Patient: Medical Treatment) (1994) 19 BMLR 144), personality disorder (B v Croydon Health Authority  1 FLR 470, R v Collins and another, ex parte Brady (2001) 58 BMLR 173), and depression (Re VS (Adult: Mental Disorder) (1995) 3 Medical Law Review 292). The same could surely be said of PEG feeding. Applying the ‘but for’ test (GJ v Foundation Trust  EWHC 2972 (Fam)), it seems clear that the only effective reason for E’s hospital detention will be to provide medical treatment for her mental disorder to which she evidently objects.
It follows that if, as appears likely, E is detained under the MHA, no jurisdictional issue arises and the Court’s interim DOL Order will cease at that point to have effect. But if, for example, an approved mental health professional were to decide that an MHA application ought not to be made, E will fall between the two regimes of detention, as she will be ineligible under the MCA. We would suggest that this would be an area where (even if there is, in general, parity between the MHA and MCA), the MHA should take primacy, and in areas of doubt, assessors must ‘take all practical steps to ensure that that primacy is recognised and given effect to’ (GJ at para 65).