The NHS Trust v L & Others
Summary: Ms L was a highly intelligent 29 year old who, because of severe anorexia nervosa, had spent 90% of her previous 16 years in inpatient units, often under the Mental Health Act 1983. She also suffered from severe obsessive compulsive disorder. In January 2012, her detention under s.3 of the Act was rescinded after all treatment options had been exhausted and compulsory treatment had been shown only to reinforce her mental disorder and to increase her disability. The NHS Trust sought a declaration that it was not in her best interests to be the subject of forcible feeding or medical treatment, notwithstanding that she would inevitably die without it.
In early 2012, Ms L had hoped to move to a nursing home,
"… but, for reasons no one has been able to fathom, (but seem likely to relate to the nursing home having second thoughts as to whether they were willing to accept the responsibility of looking after Ms L), the nursing home in question withdrew their offer of a bed. Ms L was devastated and reacted by reducing her food intake; this resulted in her becoming profoundly and dangerously hypoglycaemic."
Having been transferred to a different hospital in March 2012 for emergency treatment, a 'do not resuscitate' decision was taken and attempts to engage Ms L in a re-feeding programme continued. Her struggling attempts to engage with the naso-gastric tube and liquid nutrients are vividly detailed at paragraphs 26-27 of the judgment.
Defying the odds, but still critically ill, by mid-July 2012 she was refusing all food by mouth and wanted to make an advance decision to refuse treatment for hypoglycaemia, although it was felt she lacked capacity. She told her mother that she did not want to die and still hoped to become strong enough to move to a nursing home. Her wish to move was also recorded in writing and if funding was in place she felt she would then have the motivation to move forward. She said:
"I feel the best option for me to successfully do this would be to get stronger on the NG tube. Currently I feel an oral diet would be too much for me and also create too much anxiety for me. The NG tube could be short term to get me back on my feet and in a stronger position to move forward. Thank you for taking time to read my wishes. I appreciate your acknowledging my wishes/thoughts."
By the time of the hearing in August 2012, Ms L was willing to receive 25mls per hour of nutrients by naso-gastric tube, but not a millilitre more (see paragraphs 37-41). This dramatically reduced the number of hypoglaemic episodes but at least 30mls was necessary for her to put on weight. Weighing about 3 stone, with a body mass index (BMI) of around 7.7, her liver function was impaired, she had end stage organ damage and MRSA, her bone marrow was completely compromised and she was in significant pain from serious pressure sores. She had weeks to live. According to the expert opinion, she would have to be sedated to be forcibly fed by naso-gastric tube or PEG feeding with close to a 100% likelihood of death. No patient with this BMI was reported to have survived such an enforced re-feeding regime. Thus, the only remote possibility of survival would be if she agreed to increase her calorific intake, although even this would be too late to save her given the organ damage.
Capacity
Mrs Justice Eleanor King first had to determine the extent to which Ms L was capable of deciding for herself. Intellectually, Ms L knew that she was close to death but showed an "inappropriate indifference to matters of life and death and it seems as if it has not entirely hit home." She wanted to go to a second nursing home that had agreed to take her if she was well enough:
"50 … [I] n the past it may have been hoped that the prospect may have provided the incentive she needs to start putting on weight but, as Dr Glover points out, her illness won't even let her increase her intake by 1ml an hour in order to help her towards that goal. Even if there was a 1% chance of her agreeing to increase her input, Dr Glover is of the view that there is a 0.1% chance of her being able to stick to it and consistently to work to her recovery."
She could not contemplate any calorific increase until she was walking around and able to "use some of them up." Moreover, her fear of gaining weight increased as her BMI fell. She was held to lack capacity to make decisions in relation to serious medical treatment, in particular nutrition and hydration and the administration of dextrose for hypoglycaemic episodes, because her profound and illogical fear of weight gain prevented her from being able to weigh up the risks and benefits. However, she had capacity to decide on antibiotic treatment and analgesia and treatment for pressures sores. These treatments were not calorific "so she is able to make a perfectly rational decisions that she needs antibiotics to fight off the infection which would otherwise, in all likelihood, kill her" (paragraph 54).
Best Interests
The Judge noted that Ms L's seemingly rational desire to get stronger and to move to a nursing home was "completely overwhelmed by her terror of gaining weight and by her fear of 'calories'" (paragraph 59). Her mother did not consider compulsory feeding to be in her best interests. And the expert concluded, "…there comes a point in the treatment of any patient where, regardless of the diagnosis, the slavish pursuit of life at any cost becomes unconscionable. I believe, sadly, that this point has been reached in Ms L's treatment." After noted that the strong presumption to preserve life is not absolute, her Ladyship held:
"68. In my judgment this is one of those few cases where the only possible treatment, namely force feeding under sedation, is not to be countenanced in Ms L's best interests: to do so would be futile, carrying with it a near certainty that it would cause her death in any event. Such a course would be overly burdensome in that every calorie that enters her body is an enemy to Ms L.
69. Ms L would I am satisfied be appallingly distressed and resistant to any suggestion that she was to be force fed and to what purpose? Her poor body is closing down, organ failure has begun, she can no longer resist infection and she is, at all times in imminent danger of cardiac arrest. Even if she could, by some miracle, agree to some miniscule increase in her nutrient intake her organ failure is nevertheless irreversible and her anorexia so severe and deep rooted that there could be no real possibility of her maintaining her co-operation. Ms L on occasion shows some small spark of insight – she said on the 1st August that she was frightened as she cannot help herself from 'messing with the tube'."
In the circumstances, the Court declared (to paraphrase) that it was in Ms L's best interests for clinicians (a) to provide nutrition, hydration and medical treatment where she complied with its administration; (b) to administer dextrose to immediately save life, with minimal force if necessary; (c) not to provide nutrition and hydration if she resisted after all reasonable steps had been taken to gain her co-operation; and (d) to provide palliative care should she enter the terminal stage of her illness.
Comment: This decision is of interest, not because it provides any new legal principle, but simply because it is one of the exceptionally rare occasions when the Courts have sanctioned the possible withdrawal of nutrition and hydration from a patient with anorexia nervosa. Here there was believed to be a virtually 0% prospect of recovery. This can be contrasted with A Local Authority v E and others [2012] EWHC 1639, in which enforced re-feeding was authorised where the prospects were considered to be 20%. Clearly there does come a point where the sanctity of life must give way to the concept of dignity; where Article 2 ECHR gives way to Articles 3 and 8. That point is evidently fact-specific but, now that Jane Nicklinson has been granted permission to appeal the decision in R (Nicklinson) v Ministry of Justice [2012] EWHC 2381 (Admin), the forthcoming decision(s) of the appellate Court(s) on the "right to die" will no doubt explore the "give way" point further.
