The anorexic patient’s right to die
The case of Tony Nicklinson has featured heavily in the national media over the last few weeks. In the documentary aired on Channel 4 he stated that if the High Court did not decide in his favour, his only option would be to refuse food. However, following the Judgement of the Court of Protection last month, it appears that for some patients even this would not be an option.
The factual background
E is a 32 year old woman suffering from anorexia nervosa, alcoholism and other health conditions.
Unbeknown to her parents, E had been seriously sexually abused between the ages of 4 and 11. She had suffered from an eating disorder since the age of 11. At the age of 15 her weight had dropped to a point where she was admitted to a specialist treatment centre for 9 months. Following this she had managed to maintain a low weight and had attended University to study medicine. Following a bad relationship she had dropped out of medical school and in early 2006 was again admitted to a specialist eating disorder unit. She continued a series of emergencies and admissions for the next 6 years. In 2008 her relationship with her new boyfriend broke down and in 2010 a friend was killed in a car accident.
In the past 2 years she had mainly been treated in her own flat, in the community due to a lack of resources and during this time had a series of emergency admissions for medical and psychiatric care.
On 24 July 2011 E was assessed by a doctor who expressed the opinion that she had capacity, referring to the statutory test. On 25 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. However, at the end of July E was reviewed by a consultant psychiatrist who considered that her views about her wish to die were not consistent and capacious. 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 1983 (MHA) and was admitted for a 2 week assessment at an eating disorder unit.
Following E’s return to the community the pattern re-established itself and by early 2012 she was again drinking heavily and requiring hospital admissions.
On 20 March 2012 she was again detained under Section 3 of the MHA. She was initially fed by tube but she opposed this and the tube feeding was stopped. As a result she had not taken in any calories since March 2012. On 20 April 2012 she was admitted to the 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.
On 18 May 2012, an urgent application was made to the Court of Protection by her local authority.
On 19 May 2012 E made a suicidal gesture by attempting to hang herself, but was unharmed. A hearing took place on 25 and 28 May at which E was represented by the Official Solicitor, the other parties being her parents, the local authority and the health authority. E’s parents provided a statement for the Judge advising that they had tried every treatment proposed over the last 18 years with no improvement. They advised that she had now suffered enough and they pleaded that she should have the right to choose her own pathway, free from restraint and fear of enforced re-feed.
At the date of the judgement E was not being compulsorily treated under the MHA.
The issues to be decided by Mr Justice Jackson were:
- Whether, at this point, E had capacity to make decisions about her treatment?
- If not, whether she had capacity when she had made her advance declaration in October 2011?
- If she lacked capacity and the advance declaration is not valid, was it in her best interest to receive life-sustaining treatment in the form of forcible feeding?
The legal background
The Court of Appeal have considered the issue of capacity at length in cases such as
- St George’s Healthcare NHS Trust v S; R v Collins and others, ex parte S  3 All ER 673; The right of a competent pregnant woman to refuse treatment even if that refusal may result in harm to her or her unborn child.
- Re B (Adult, refusal of medical treatment)  2 All ER 449 Right of a patient who has capacity to refuse life-prolonging treatment and
- Re C (Adult, refusal of treatment)  1 All ER 819 C had paranoid schizophrenia and was detained in Broadmoor secure hospital. He developed gangrene in his leg but refused to agree to an amputation, which doctors considered was necessary to save his life. The Court upheld C’s decision.
The law in relation to capacity is clear: a person is assumed to have capacity unless it is established that they lack capacity. Under the Mental Capacity Act 2005, it is not possible to treat a person as lacking capacity simply because the decision they are making is unwise. In addition a lack of capacity cannot be established merely be reference to age or a condition or aspect of behaviour which leads people to make unjustified assumptions about capacity. A person will only lack capacity if at the material times they were unable to make a decision for themselves in that they were unable a) to understand the information relevant to the decision, b) to retain that information, c) to weigh that information as part of the process of making the decision, or d) to communicate their decision.
Notwithstanding this Mr Justice Jackson held that E lacked capacity a) In July 2011 b) in October 2011 and c) at the date of the hearing. In relation to her capacity in July 2011 Mr Justice Jackson held that due to the uncertainty of the medical evidence at this time and the fact that she had made a subsequent attempt advance decision that would be accepted as valid, she clearly lacked capacity in July 2011. In respect of her capacity in October 2011, Mr Justice Jackson held that despite the fact there was a general medical view that she had capacity at this time, that she had had the benefit of advice from an independent mental health advocate and from a solicitor, the document had been witnessed by her mother and by a mental health professional and that her BMI was 15, she still lacked capacity. Finally, in respect of E’s current capacity, Mr Justice Jackson held that “there is strong evidence that E’s obsessive fear of weight gain makes her incapable of weighing the advantages and disadvantages of eating in any meaningful way” and “A secondary reason for the conclusion that E lacks capacity is that she is now subject to strong sedative medication and is in a severely weakened state.”
Following the finding that E lacked capacity, Mr Justice Jackson declared that it was in her best interests to be fed against her wishes. In coming to his decision he stated “E is a special person, whose life is of value. She does not see it that way now, but she may in future.”
Author: Vanessa Harris