In the Balance: Anorexia, Capacity and…

*Please note, this article deals with subject matter which some readers may find distressing*

Cases involving life-saving medical treatment are surely among the most difficult for individuals, professionals (both medical and legal) and judges to come to grips with in the Court of Protection. How do you strike a balance between preserving someone’s life and the mental distress being treated against their will might cause them? Can someone lack capacity to decide for themselves whether to decline treatment and risk death, but at the same time have capacity to instruct lawyers to present their point of view? How do decision-makers, including judges, grapple with the fact that their decision might be the difference between life and death?

These were just some of the questions confronting Mr Justice Moor when he gave judgment on 9 and 15 May 2023 in the case of ‘Patricia’, a 23-year-old woman with a longstanding diagnosis of anorexia nervosa. Indeed, the best interests issues in the case were so finely balanced that the judge openly acknowledged that he had changed his mind several times when listening to oral evidence. The result is two judgments which – as well as dealing very sensitively with a distressing case - provide important guidance to those dealing with similar cases in the future, including as to the evidence and considerations which are vital to assisting the Court of Protection in making sound decisions, even under the most difficult circumstances.

The facts

The nature of Patricia’s anorexia meant that she would severely restrict her caloric intake until she became extremely ill. This had resulted in her admission to numerous eating disorder units, including involuntarily under the Mental Health Act 1983. During these admissions, Patricia had been treated via nasogastric feeding – a process whereby a narrow feeding tube is placed through your nose down into your stomach - against her wishes and under restraint. Understandably, she had found these experiences incredibly distressing. While this course of treatment had (at best) stabilised Patricia’s condition, she would deteriorate as soon as she was discharged because she would immediately start losing weight again. In June 2022, Patricia consented on one occasion to nasogastric feeding and her condition improved, a decision which was potentially linked to the risk of her being sectioned again for treatment. However, she subsequently withdrew her consent to the treatment following which her health again deteriorated.

This led to a best interests meeting in November 2022 at which it was unanimously agreed that Patricia would be discharged from specialist eating disorder services and nasogastric feeding without her consent would be stopped. Instead, Patricia would be supported to access health services in the community on her own terms, which was in line with her own wishes and feelings. In particular, Patricia stated that she only wished to have nasogastric feeding if she consented, or if she was unconscious and it was absolutely lifesaving. It was clear throughout that Patricia wanted to live. It was considered that this course of action would have greater prospects of success in improving Patricia’s condition in the long-term than continuing treatment under compulsion, although the risk of Patricia dying remained high.

The Court of Protection proceedings

In December 2022, the relevant NHS Trust (‘Z Trust’) made an application to the Court of Protection seeking approval of the way forward as agreed at the November 2022 best interests meeting. Patricia was assessed as having capacity to litigate the proceedings and repeated her wish that she did not want to receive treatment without her consent unless it was required to save her life.

However, Patricia was subsequently admitted to a hospital operated by Y Trust in a very serious condition and close to death. As Patricia was non-compliant with the recommended course of treatment (including nasogastric feeding) and this treatment was considered necessary to save her life, Y Trust made a further application seeking the Court’s authorisation to administer nasogastric feeding under restraint.

When the Court initially dealt with the application, there was some evidence that Patricia was voluntarily increasing her caloric intake and permission to administer treatment without consent was refused. Unfortunately, it then became clear that Patricia’s liver was severely damaged and would fail in the very short term without treatment, leading to Patricia’s death. The two Trusts therefore renewed the application for permission to treat her without her consent, supported by evidence from three doctors who considered nasogastric feeding was necessary to save her life. The Court also heard from Patricia who said that the only way she would recover would be by her deciding to increase her caloric intake herself - which she was committed to doing and had already done - and repeated how distressing being ‘force-fed’ would be. She also expressed fears that she would suffer physical harm if she was treated against her will under restraint and/or sedation.

The judge’s decision

At the first substantive hearing on 9 May 2023, the judge decided that there was reason to believe that Patricia did not have capacity to make decisions about her medical treatment, although she did have capacity to litigate, which meant the Court of Protection’s interim powers under s.48 of the Mental Capacity Act 2005 (the ‘MCA 2005’) were engaged.

As to whether or not to grant the Trusts’ application, he identified Patricia’s best interests as being the magnetic factor in the case and that he also needed to take into account Articles 3 and 8 of the European Convention on Human Rights (respectively the right to freedom from torture and inhuman or degrading treatment and the right to respect for privacy and family life). While acknowledging how difficult it was for any judge when their decision not to authorise medical treatment might lead to a person’s death, he said (at paragraph 32) that: “…although life is precious and preserving it is a very important goal of the court, it is not the only aspect of these cases and there is much more that I must balance in coming to my conclusion.” This included the importance of respecting Patricia’s autonomy.

Having heard oral evidence from the three doctors, Patricia and her father, the judge decided that he would not authorise nasogastric feeding without Patricia’s consent as matters stood. In reaching this decision, the judge took account of the following matters:

Patricia had voluntarily raised her caloric intake within a short period of time. She wanted to live and was doing her best to get better on her own terms in line with her consistently expressed wishes and feelings. Based on the evidence about her liver damage, it was likely that she would need to increase her intake further, but the judge hoped that this could be achieved.
The fact that treating Patricia against her will would cause her significant mental distress and potentially physical harm – including via an increased risk of self-harm - had to be weighed against the prospect that such treatment might not ultimately save her life, especially when this method had not secured long-term or even short-term improvement in Patricia’s condition in the past.
Despite the potential risk of liver failure in the very short term and Patricia’s own death as a result, Patricia’s condition would only improve in the long term if she wanted to engage with treatment.
The judge did not have a risk assessment dealing with the potential mental and physical consequences of the proposed administration of the treatment under restraint and/or sedation.

However, the judge asked Patricia to consider very carefully agreeing to being treated by nasogastric feeding if her liver function continued to deteriorate to the point where she might die.

At that final hearing on 15 May 2023, the judge was required to finally determine whether Patricia lacked capacity to make decisions about her medical treatment for the purposes of s.15 MCA 2005. The Trusts’ view was that she lacked capacity. This was supported by the evidence of two doctors who took the view that Patricia’s eating disorder – specifically the fear of gaining any weight - was now impairing her cognitive function to such an extent that she was unable to understand, use and weigh information relevant to decisions about her treatment. As one of the doctors put it:

“Patricia has a partner. The partner is anorexia. It controls the other part of her mind and stops her carrying out what she knows is actually in her best interests.”

Counsel for Patricia argued that she did have capacity and that the fact that she had been able to sustain a gradual increase in her caloric intake, including since the 9 May 2023 hearing, was evidence of this. The Trusts’ position was that Patricia had only done this voluntarily because she was confronted with the prospect of the judge ordering her to be treated under restraint if she did not increase her intake, which the judge accepted was sadly a possibility. Further, Patricia had not been able to increase her intake to a sufficiently high level, including to deal with her liver damage, despite the fact that she had been told that she was at high-risk of dying and had herself consistently expressed a wish to live. The judge noted that Patricia had not agreed to nasogastric feeding in the event her liver function continued to deteriorate.

Agreeing with the Trusts and accepting the evidence of the doctors, the judge determined that Patricia lacked capacity to make decisions about her medical treatment as a result of her anorexia. However, he emphasised that judges should not come to the automatic conclusion that those with anorexia lack capacity. As always, this assessment would depend on the circumstances of the case. In Patricia’s case, if she was able to continue to voluntarily increase her intake and stabilise her condition, the issue of capacity might be decided differently. He also reiterated that the fact Patricia did not have capacity to make the decision for herself did not mean her autonomy should be overridden, which was why he remained of the view that she should not be treated against her wishes.

Katharine Elliot is a barrister at Landmark Chambers who specialises in Court of Protection matters concerning issues of health and welfare and property and affairs. She is regularly instructed by the Official Solicitor, Office of the Public Guardian, local authorities and family members.