United state of mind

or the first time last month a court in this country had to decide whether it was in the best interests of a patient in a minimally conscious state, with little or no prospect of recovery and who was totally dependant on others, to discontinue and withhold life-sustaining treatment. Mr Justice Baker ruled on 28 September 2011 in Re M [2011] EWHC 2443 (Fam) (see www.solicitorsjournal.com, 29 September 2011) that life-sustaining treatment, including artificial nutrition and hydration (ANH), should not be withdrawn.

The patient in the case, M, was taken to hospital in 2003 after having been found by her partner to be in a drowsy and confused condition. Soon after arriving at the hospital, M fell into a coma caused by viral encephalitis which left her with extensive and irreparable brain damage and wholly dependant on others for her care.

In 2007 M's family applied to the High Court for a declaration that the doctors could lawfully discontinue and withhold all life-sustaining treatment. They argued that M's experiences were predominantly negative and that, given her wishes and feelings before her illness and those of her family, withdrawal of medical treatment was in her best interests.

When proceedings began, M was believed to be in a vegetative state. However, it was later discovered that M is in a minimally conscious state, meaning that she has some awareness of herself and her environment but does not have full consciousness. The Official Solicitor submitted that, where a person was in a minimally conscious state and clinically stable, it could never be in their best interests to withhold or withdraw life-sustaining treatment. Alternatively, if a balance sheet approach applied, the balance came down clearly in favour of continuing treatment.

Right to life and personal wishes

Over the years, legislation and common law have tried to reconcile the principle of the right to life with the wishes of the patient and/or their relatives and/or the views of their medical team. One of the key pieces of legislation relating to persons who lack capacity is the Mental Capacity Act 2005.

Section 4 of the Act sets outs the factors which must be taken into consideration by the person determining what is in the best interests of the person lacking capacity. The decision maker must consider all the relevant circumstances and, in particular, must consider the patient's future life conditions, the patient's past and present wishes and feelings, and the beliefs and values that would be likely to influence the patient's decision if he had capacity. The court must also take into account the views of anyone engaged in caring for the person or interested in his welfare.

In reaching his decision about what would be in M's best interests, Baker J emphasised that the principle of the right to life remains paramount. However, his judgment reaffirmed that limits are placed on prolonging life in all cases. These limits are: a person's autonomy to decide and what is, objectively, in the best interests of the patient.

Section 24(1) of the Act also puts advance decisions to refuse treatment on a statutory footing. These were previously only recognised by case law (such as Airedale NHS Trust v Bland [1992] UKHL 5 and Re AK (Medical Treatment: Consent) [2001] 1 FLR 129).

Individual autonomy

Although individual autonomy is at the core of the Act, Re M demonstrates how little certainty the Act offers individuals trying to make decisions regarding their welfare in the future.

The Act's code of practice states that even though, in deciding what is in the patient's best interests, the decision maker must take into account the patient's wishes and feelings, beliefs and values, these will not necessarily be the deciding factor. As Baker J says: 'The decision must be based on [the patient]'s best interests and not on what [the patient] would have decided if he had capacity.' This suggests that the principle of individual autonomy will always be trumped by the principle of the right to life if the decision maker feels that the particular life in question is worthwhile.

Individual autonomy is also restricted by sections 25 and 26 of the Act, which further define and delimit advance decisions, providing that the treatment and the circumstances of the refusal must be specified and that the decision maker must have anticipated the exact circumstances of his or her illness. Advance decisions which do not comply with these sections or are vague in any way may be challenged or rejected by the healthcare professionals in charge or the presiding court. In Re M, Baker J found that any statements M had made before her illness had been informal and did not constitute an advance decision.

Re M highlights the difficulty of balancing the important principle of personal autonomy, retaining the capability of refusing any infringement of our bodily integrity, with the sanctity of life. It suggests that the importance of preserving life may well be the decisive factor for any decision maker.

Baker J's decision comes at a time when there is increasing public debate about the treatment of those suffering from severe disability and those nearing the end of their lives. It was for this reason that Baker J held that his judgment should be reported publicly, subject to a reporting restriction on the identities of the individuals concerned.

Perhaps the debate ignited by Re M may lead to a re-evaluation of whether our current legislation strikes the correct balance between the need to preserve life and to uphold an individual's right to choose how that life plays out.