Balancing act: Re E
Jessica Negyal weighs up the difficult decisions the Court of Protection faced in Re E
How should the courts strike a balance between the weight objectively to be given to life, on the one hand, and to personal independence on the other?
This tricky question had to be considered in a case that came before Mr Justice Peter Jackson in the Court of Protection earlier this year (A local authority v E (by her litigation friend the Official Solicitor) and a health authority and E’s parents [2012] EWHC 1639 (COP)).
Reaching capacity
The case involved a 32-year-old woman (E) suffering from extremely severe anorexia nervosa, alcohol dependence and a personality disorder. She was refusing to eat and her death was imminent. Her local authority made an urgent application to the Court of Protection on 18 May for her position to be investigated and protected. E was represented by the Official Solicitor.
The first question the court had to consider was whether E had capacity to make her own decisions about her treatment. The Court of Protection can only make a decision for a person when that person lacks the capacity to decide for herself. If a person does have capacity, they are entitled to make decisions for themselves, even if that decision brings about their death.
The Mental Capacity Act 2005 (the Act) provides that a person must be assumed to have capacity unless it is established that she lacks capacity. Whether a person lacks capacity must be decided on the balance of probabilities.
So, what is meant by ‘lack of capacity’? The Act says that “a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.”
The judge decided that E lacked capacity to make a decision about life-sustaining treatment. Although it was clear that she had “an impairment of, or disturbance in the functioning of, the mind or brain” in the form of her anorexia, it was also clear that she could understand and retain the information relevant to the treatment decision and could communicate her decision.
However, there was strong evidence that E was incapable of weighing the advantages and disadvantages of eating. In addition, she was subject to strong sedative medication.
A complicating feature of the matter involved advance decisions (see box) that E had previously made with regard to life-sustaining treatment. Most recently, E had signed an advance decision on 3 October 2011, witnessed by her mother and a mental health professional, which stated that if she was close to death she did not want tube feeding or life support but would accept pain relief and palliative care.
The second question that the judge therefore had to consider, as a result of his conclusion that E lacked capacity, was whether E had mental capacity when she made the advance decision in October 2011 and whether that advance decision was valid and applicable.
Contrary action
The judge found that the formalities set out in section 25 of the Act had been complied with and that E had not withdrawn the decision. E had included a note: “If I exhibit behaviour seemingly contrary to this advance directive this should not be viewed as a change of decision.” However, the judge did not consider that this instruction could be binding in light of the Act which provides that a decision will not be valid if the maker has done anything clearly inconsistent with it remaining her fixed decision.
No formal assessment of capacity was taken at the time. E was placed under Mental Health Act section on the same day that the decision was signed. The judge found that on the balance of probabilities, E did not have capacity at the time she made the advance decision.
He felt that “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.” He felt it doubtful that any such investigation would have reached the conclusion that she had capacity.
The third question that the judge had to consider was whether, if E lacked capacity and had not made a valid advance decision, it was in her best interests to receive life-sustaining treatment by forcible feeding. He said that: “E’s case has raised for the first time in my experience the real possibility of life-sustaining treatment not being in the best interests of a person who, while lacking capacity, is fully aware of her situation.”
This was clearly an extremely difficult decision to make. Section 4 of the Act governs the assessment of best interests and the court had to consider all the relevant circumstances.
So what did the court look at? The judge considered whether E would recover capacity but concluded that it was not likely that she would within a year. Although E was unable to participate in the hearing, she had spoken to the Official Solicitor’s representative and he reported on their discussions. The judge considered E’s past wishes and feelings, her present wishes and feeling and her beliefs and values. She had described her life as “pure torment” and said that she wanted to live for the remainder of her life as she chooses, and if necessary, to be allowed to die with dignity.
The judge went on to consider in detail the views of E’s parents and those of various medical experts. E’s parents had lived through E’s difficulties and unsurprisingly found themselves in a very upsetting situation. They did not favour further treatment and said: “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... We want her to be able to die with dignity in safe, warm surroundings with those that love her.”
Sliding scale
The judge said that there were weighty factors on each side of the scales. The people who knew E best did not favour further treatment. The required treatment involved bodily intrusion and the overbearing of E’s will.
He felt that E’s views were entitled to high respect. The judge noted that E had already embarked on the course of palliative treatment and that the application had been brought by the local authority very late in the day. He acknowledged that there were significant risks involved in treatment, that the prospects of success were modest and that E may recover capacity only to make a valid advance decision.
However, against these factors, he said: “I place E’s life in the other scale.” There was the possibility that further treatment might succeed as services and funding would be made available that had not been available before.
Although the judge found that the competing factors were almost exactly in equilibrium, he found that the balance tipped in the direction of life-preserving treatment. He therefore declared that it was lawful and in E’s best interests to be fed, forcibly if necessary.
Had the relevant authorities not agreed to provide the necessary resources for treatment, the judge said that he would not have reached the conclusion that he did.
Cases of this nature before the Court of Protection are extremely difficult and clearly distressing for all involved, with different parties taking different stances.
In this particular case, E’s parents wanted their daughter’s wishes to be respected. E requested to be allowed to act as she wanted (realising that refusal to eat must lead to death). The medical staff were doubtful about further coercive treatment but offered to support whatever decision was made.
The health authority adopted a neutral position. The Official Solicitor sought a declaration that forcible feeding was in E’s best interests. The local authority was initially neutral but ultimately supported the Official Solicitor.
In considering what would be in E’s best interests, the judge acknowledged that the “decision is a heavy one” and commented that “the difference between life and death is the biggest difference we know”.
Advance decisions: the facts
People have a right to refuse medical treatment while they have capacity to make that decision. An advance decision (also known as a living will) is a decision made while a person is capable, to refuse specified medical treatment at a time in the future when they might lack the capacity to make that decision.
If the person had capacity when they made the advance decision, it has the same force as a contemporaneous decision provided that it is valid and applicable to the current circumstances. If it is valid and applicable, then healthcare professionals must follow the decision (even if they do not consider it to be in the person’s best interests).
In order to determine if an advance decision is valid and applicable, healthcare professionals must try to find out if the person: a) has withdrawn the decision; b) has done anything else clearly inconsistent with the advance decision; c) would have changed their decision if they had known more about the current circumstances; or d) if they have subsequently conferred the power to make that decision on an attorney (via a health and welfare lasting power of attorney).
Section 25 of the Act stipulates that an advance decision is not applicable to life-sustaining treatment unless it is in writing, is signed and witnessed and the decision must be verified by a statement by the maker that it is to apply to that treatment even if life is at risk.
If there is serious doubt or disagreement, an application can be made to the Court of Protection for a declaration as to whether an advance decision is valid and is applicable to the treatment. However, the court cannot overrule an advance decision to refuse treatment if it is valid and applicable.
Basic care cannot be refused in an advance decision (for example, the offer of food and water by mouth). However, artificial nutrition and hydration (ANH) is a form of medical treatment and can be refused in an advance decision. ANH involves the use of tubes to provide nutrition and fluids to a person who cannot take them by mouth. To refuse ANH in an advance decision would be likely to result in the person’s death.