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Anorexia and the refusal of clinically assisted nutrition and hydration - a case law example

View profile for Sophie Holmes
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Court of Protection decides that man with irreversible stoma has the right to choose to die

The recent case of A Mental Health Trust v BG [2022] EWCOP 26 concerned a 19-year-old woman (BG) with a primary diagnosis of anorexia nervosa, and the decision to withdraw clinically assisted nutrition and hydration (CANH).

From an early age, BG had struggled to regulate her emotions and would become overwhelmed in dealing with ordinary events. It is noted in the judgment of Sir Jonathan Cohen (Cohen J) that BG was ‘exceptionally anguished and distressed by, for example the recounting of historical events in which people had suffered, accounts of suffering of animals or seeing roadkill, or world events whether they [showed] the plight of humans or animals… she felt the pain of everyone and everything’.

In addition to being diagnosed with anorexia nervosa, BG accepted that she had diagnoses of mixed anxiety and depression, chronic fatigue, and fibromyalgia, but disputed that she also had mixed personality disorder. It is noted in the judgment that BG herself added ‘unremitting widespread physical pain’ to her list of diagnoses. 

BG had become known to mental health services at the age of eight, having developed fears of terrorism, burglars, and family death without any personal experience of such events. She began to present with depression age 14 and soon after exhibited self-harm behaviours and suicidal ideation.

By the time the case reached the Court of Protection, BG had been under the care of psychiatric services for four years. She had been in hospital continually for three years, detained under Sections 2 and 3 of the Mental Health Act 1983, had nine sessions of electro-convulsive therapy and received over 1,000 nasogastric (NG) tube feeds, some whilst being restrained by up to four members of staff. She had ingested bleach, had a BMI of approximately 15 and continually declined any nutrition or hydration which may have contained calories.

It was BG’s consistent wish that all artificial nutrition and hydration and any other active treatment be stopped, even though she knew this would lead to her death.

The primary issue in this case was that whilst BG’s treating clinicians asserted that she lacked mental capacity to decide to refuse treatment, her family disagreed. Under Section 4 of the Mental Capacity Act 2005, if an individual is found to lack capacity in the relevant domain, a decision must be made in their best interests.

The NHS Trust therefore sought an order that it would be in BG’s best interests to withdraw treatment (including artificial nutrition and hydration), which was supported by BG as well as her parents, and an independent psychiatrist instructed by the Official Solicitor.

BG had previously been found to lack capacity to conduct the proceedings (i.e., instruct a solicitor in respect of the litigation herself) in a hearing before Mr Justice Cobb (Cobb J) on 26 April 2022. Given the gravity of the decision, it was acknowledged during this hearing that a final hearing date must be set at the earliest opportunity and as such was listed for 06 May 2022.

The hearing on 06 May 2022 took place before a different Judge, Cohen J, for a decision in respect of withdrawal of treatment to be made. During the hearing on 26 April, Cobb J had not ordered a second medical opinion (despite BG’s psychiatrist suggestion that one would be desirable) given the urgency of the decision, which Cohen J was uncomfortable with.

All parties to the case pleaded that BG could not endure another delay (to allow for a second expert report to be prepared) with BG herself describing the feeling of enduring further hours of artificial nutrition via NG tube each day as ‘acid under [her] skin’.

Cohen J empathised and made it clear that whilst he appreciated “every single day [was] crucial and painful” for BG. He noted however, that the report of BG’s treating psychiatrist was the only medical evidence before the court and that her therapeutic relationship with BG inevitably impacted her independence, meaning that he could not make a ruling of such significance without a second experts’ opinion.

Cohen J therefore delayed the final hearing until 09 June 2022, whilst a second report was commissioned from Dr Tyrone Glover, a consultant psychiatrist and specialist in eating disorder psychiatry.  

The final hearing was subsequently brought forward two weeks following an attempt by BG to sadly end her own life. At the time of the hearing on 23 May 2022, BG’s family agreed that they were willing to concede on the issue of capacity to make decisions to refuse medical treatment (i.e. accept that she did lack capacity to make this decision, which they had initially disputed), and her treating psychiatrist and Dr Glover also agreed that BG lacked capacity in the relevant domains.

Given the agreement that BG lacked capacity, the court was therefore required to determine what was in her best interests in accordance with the tests at Section 4 MCA 2005

Cohen J considered in accordance with Section 4 (6) MCA that it was a prolonged wish of BG’s that she be allowed to ‘exercise her own autonomy over her body’. He stated ‘this is not a sudden decision. It has been a long and deeply held wish of hers. I have had the obligation and privilege of reading her diary over many weeks. It is a harrowing read, setting out her suffering and how it should be resolved’.

He also considered Section 4 (7), which states that he must consider (if practicable and appropriate) the views of anybody named by P to be consulted and anybody engaged in caring for P, amongst others. Cohen J commended the approach of BG’s parents, who were placed in impossibly difficult circumstances. They believed that it was in BG’s best interests for treatment to be withdrawn and commented that ‘she [was] exhausted from being in so much intolerable pain for so long’.

Both experts confirmed to the court that there was nothing more that could have been done in their view to achieve an improvement in BG’s mental state. Dr Glover commented that ‘medical treatment so far, no matter its well-intentioned nature, [had] not in any way helped BG’s suffering to reduce’, and Cohen J ruled that withdrawal of CANH was in BG’s best interests.

A postscript to the approved judgment of Cohen J states that BG sadly passed away on 23 July 2022.

Strict reporting restrictions initially applied to the case, as BG was proactive in accessing and deeply distressed by material written about her. It was argued on behalf of the press that the Court of Protection sit in public and that it would not be just ‘for the court to take a decision that [would] almost inevitably lead to someone’s death without the public being allowed to know that such a decision had been taken’.

Publication was subsequently authorised, but the case is still heavily injuncted and there can be no details which would lead to BG, her family or the treating doctors being identified.

The case was widely reported following the publishing of Cohen J’s judgment, with many condemning the application by the NHS Trust to withdraw treatment and referring to the decision on social media platforms as “disgraceful”. There seemed a distinct lack of awareness about the Court of Protection process by some of those commenting on the decision.

It is noted in a postscript to the published judgment that Cohen J had specifically requested that the Mental Health Trust kept him informed of BG’s progress even after the decision had been made.

Cohen J referenced the case of Airedale NHS Trust v Bland [1993] AC 789 in the judgment, which states that ‘the law contains the strong presumption that all steps will be taken to preserve human life unless circumstances are exceptional. However, the principle is not absolute and may yield to other considerations’. He further referenced an extract from Airedale v Bland which seems particularly pertinent in this case:

‘There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery’.

Despite criticisms of Cohen J’s decision, it is apparent that every avenue to help this young woman had been exhausted, and the court placed a lot of weight on her wishes and feelings and the distress and pain that she was experiencing on a day to day basis.