Brain-damaged woman denied the right to die: Living wills

In a landmark decision the High Court has ruled that it was not in the best interests of a patient with minimal consciousness (known as M) for artificial hydration and nutrition (“AHN”) to be withdrawn. Mr Justice Baker has stated that the preservation of her life was the most important factor to take into account.

In 2003 at the age of 43, M contracted viral encephalitis and fell into a coma. It was discovered that she had suffered irreparable brain damage and that she would be wholly dependent on others for her care for the rest of her life.

Initially M was diagnosed as being in a vegetative state and in 2007 M’s family applied to the High Court for a declaration that the doctors be permitted to lawfully discontinue AHN and that M be allowed to die.

On further investigation it transpired that M was in fact in what is known as a minimally conscious state (also known as “locked in syndrome”). This meant that M was slightly above a vegetative state and was aware, at least to a limited extent, of herself and her environment. What level of awareness M had (measured in part by an ability to obey a verbal command) remained in dispute between the experts. One expert stated that she was unable to identify any aspect of M’s life that gave her any pleasure or satisfaction.

As a result of this the family proceeded with the application, albeit the proceedings were transferred to the newly constituted Court of Protection arm of the High Court.

Mr Justice Baker heard evidence from the family about M’s life and how, in their view, her experiences were predominantly negative. He also acknowledged that M had previously expressed to her family that she would not want to be kept alive in such circumstances.

However he held that the test to be applied is not what M would have done if she had capacity, but rather objectively what was in her best interests. The “best interests” test is one of the cardinal principles of the Mental Capacity Act 2005 and section 4 of that Act sets out what factors should be taken into account when considering best interests. One of those factors is “the person's past and present wishes and feelings”. It was submitted on the part of M’s family that insufficient weight was being given to her previously expressed wishes and feelings.

The Official Solicitor submitted that the formal requirements attached to advance decisions about treatment (otherwise known as “living wills”) were there for good reasons, namely to prevent the abuse of vulnerable people. For this reason it was argued that only limited weight could be given to an informal statement of wishes.

Mr Justice Baker referred to the Code of Practice to the Mental Capacity Act which gives specific guidance in the context of life sustaining treatment: “All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life sustaining treatment even if this may result in the person’s death.”

Mr Justice Baker held that M was minimally conscious, clinically stable, aware of herself and her environment and able to respond and communicate, albeit in a very limited away. He also stated that M suffered pain, distress and discomfort but that her life was not overwhelmingly negative and that there was some prospect of improvement in the quality of her life, if not her level of consciousness. He said she is therefore “recognisably alive in a way that patient in VS is not.”

In making his decision Mr Justice Baker used the “balance sheet” test and listed on the one hand the advantages of withdrawal of treatment. These included the sparing of distress, pain and discomfort. He also noted that being allowed to die would be consistent with statements that M had made in the past.

However on the other side of the balance sheet he concluded that in M’s circumstances the right to life carried the greatest weight.

Consequently the question of withdrawal of treatment in cases of patients in a minimally conscious state is far more complex than those in a persistent vegetative state. The former type of patient will have a level of brain activity and therefore more awareness. In those circumstances the right to life is likely to prevail.

M’s family has endured years of heartbreak in trying to do what they thought was best. This case is a terrible reminder that advance decisions about treatment or living wills can be of tremendous benefit in trying to avoid such heartbreak.

An advance decision allows a person to state what forms of treatment they would or would not like, should they be unable to state what forms of treatment they would like in the future. The statutory procedure for making an advance decision ensures that the patient understands the effect of their decision. The decision itself is recorded in writing and signed by both the patient and a witness. In such circumstances the advance decision or living will is binding.