Triumph of autonomy

‘If I ever end up like that, shoot me!’ said Mrs N, about her parents living with dementia. So many of us say similar things, but what does it really mean, if we end up in comparable or worse circumstances, and must rely on artificial means to stay alive?

After making this statement, N, once a feisty, proud, self-conscious and well-presented woman, became a sufferer of advanced multiple sclerosis. Her case, brought by her daughter M under section 15 of the Mental Capacity Act 2005, explored just this.

Autonomy, as the right to self-determination, is integral to our entire existence. Closely connected to these principles are freedom and dignity, from which we are all to benefit equally – a stance proudly promulgated in the preamble to the United Nations’ Universal Declaration of Human Rights. While egalitarian in principle, these rights extend only until their force is met with another of similar or greater force: the sanctity of life or ‘inviolability of life’ ethical principle, more commonly known to us lawyers as article 2 ECHR.

In previous cases where these principles have been at loggerheads, decisions have generally erred on the side of imposing life even if life is lugubrious, undignified, and all evidence provides it would be entirely unwanted. However, recent judgments have shown that this is not the case.

We don’t automatically need to holster the ideas of autonomy and self-determination when loss of life is a consequence, as statutory provision provides for this. The law provides that an adult with capacity has the right to refuse medical treatment. A person with capacity can also make a lasting power of attorney allowing decisions on the receiving of life-sustaining treatment to be made for them.

Advance refusals of treatment are notoriously difficult to make, as it must be shown that the creator specified the particular treatment in question and did not do anything else inconsistent with the advance decision. Advance decisions must be made in writing, be witnessed, and specify that the terms are to apply even if life is at risk. In other words, foresight of all possible scenarios and an unfailing exhibition of dedication to its terms are required, an impossibility beyond rationality.

Pragmatic judgment

In M v N (by her Litigation Friend, the Official Solicitor) and others (2015), M sought a declaration from the Court of Protection determining whether it would be in her mother’s best interests to continue to receive life-sustaining treatment by means of clinically assisted nutrition and hydration (CANH). N’s cognitive abilities were neither definitively considered as being at the level of a vegetative state or a minimally conscious state. She was, however, unable to speak, eat, breathe, make decisions, communicate, or move.

N’s family presented a strong case. Based upon family history and her own previously exhibited wishes, thoughts, feelings, and behaviour, they argued that N would not have wanted to live a life imposed upon her for the sake of living.

The value of N’s spoken advance refusal of treatment, taken together with a general understanding of her character, was not attrited by an overbearing application of the MCA’s difficult requirements. This judgment specifically considered the value of spoken advance refusals being communicated through family.

Mr Justice Hayden delivered as momentous, humane, pragmatic, and personal a judgment as one could ever hope to be the subject of under such difficult circumstances. N’s dignity and human freedom were found to overwhelm the argument for further continuation of her life, CANH was to be withdrawn, and the declaration was granted. Hayden J’s judgment was the first time the Court of Protection has agreed to withdraw life-sustaining treatment from a person considered to (potentially) be in a minimally conscious state.

There have been other significant judgments, including Re M (2011) and the Bland, Purdy, and Pretty cases in which this very careful balancing act has had to be considered. This will always be the case as each circumstance is to be carefully considered individually.

It is of note that if a valid advance refusal had been made, the battle for N and her family could have ended long ago. While there has been a marked increase in people making lasting powers of attorney following the introduction of the new, simplified forms, hardly anyone considers making an advance decision.While N’s case, and similar other recent cases, present a coruscating hope that pragmatism will prevail, the MCA’s requirements must be strengthened and broadened, within the bounds of reason, for autonomy to triumph more often.

Elizabeth Gibbison is an assistant solicitor at Hay & Kilner Solicitors

@HayKilner www.hay-kilner.co.uk

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