Your Say and Control – End of Life Choices Matter


The Mental Capacity Act 2005 provides the legal framework for making decisions on behalf of individuals who lack mental capacity.

Elderly Woman and Family

The general premise in law and medical practice is that people have the right to consent or refuse treatment even when they lose capacity in the future and even if this causes their death.

This has been the overriding principle in common law which is embraced in statute. The same applies whether the decisions are life-changing or result in the person’s death.

Advanced decision is a valid and acceptable way to refuse treatment and has the same impact as contemporaneous decisions.

People in the healthcare sector and medical profession must follow a valid advanced decision as long as it applies to the particular circumstances and specific treatment in consideration.

Failure to do so could result in a charge of criminal assault.

The statute’s underlying theme is that any decision made on behalf of someone who lacks mental capacity is in their “best interests”.

This Act also introduces the advanced statement which are preferences and wishes in relation to best interests. This is as a guide only as against to it being legally enforceable which an advanced decision is.

Of interest is the fact that a new tool has been launched to help people control end of life decision making, especially where they ultimately lose capacity.

This tool is known as My Living Will. This is an online tool that provides comprehensive information about the advanced decisions and advanced statement.

This tool allows an individual who has capacity when creating this document, to create a personalised individualised advanced decision to refuse treatment and an advanced statement of preferences and wishes.

So for example if the person has not appointed a Lasting Power of Attorney to act on behalf of their interest in financial and health matters, then they are asked to name a key person which could be party to any discussions and decisions about that person when the time comes.

In My Living Will the different clinical circumstances where a person loses capacity may arise are comprehensively considered and covered.

These include dementia, stroke resulting in coma, diminished state of consciousness, head injuries and other terminal illnesses including all forms of neurodegenerative conditions or respiratory failure as well as kidney and liver failure.

The individual is given the chance and the opportunity to state what phase of illness they wish the advanced decision to come into effect.

It covers the consequences of the refusal of each treatment.

So when the person chooses any specific treatment to refuse they are shown the treatment and circumstances in which the treatment is being considered therefore avoiding confusion or contradiction, the wording cannot be changed later.

My Living Will offers guidelines and suggestions for what the advanced statement might cover. This includes personal care, chronic illness and of course the place where the person is to be cared for.

In essence the advanced statement and the advanced decision gives the individual a degree of control and choice at the end of life and on key issues that matter to them were they to lose mental capacity later on.

It allows the individual to express their values such as religious beliefs and make decisions accordingly.

This is because in a setting of say Intensive Care healthcare professionals may be reluctant to implement the advanced decision without knowing the individual’s lifestyle, values and beliefs.

My Living Will allows the person to both consult and give signed copies of the advanced decisions and the advanced statement to their GP as well as to key family members.

On the subject of the connection between the advanced decision and Lasting Power of Attorneys for health and welfare it is covered extensively in the narrative in My Living Will. So if the advanced decision is made before the Lasting Power of Attorney then the advanced decision is rendered invalid. Alternatively if the Lasting Power of Attorney for health and welfare is prepared and registered first then the advanced decision is valid.

The pros and cons of both the advanced decision and the Lasting Power of Attorney are worth considering. There are of course very good reasons to create both documents. The Lasting Power of Attorney gives attorneys the authority to make decisions about the person who has lost mental capacity both on health related matters as well as in relation to financial matters.

While the advanced decision spells out exactly which treatment the person would want to refuse and under which circumstances and at what point of their illness.

These documents come in handy when especially there is a disagreement between family members in terms of what the person in question would want. The Lasting Power of Attorney has to be registered with the Court of Protection to be valid while the advanced decision is valid once it has been signed and witnessed.

My Living Will has been created by a diverse group of senior healthcare professionals, senior lawyers and ethicists.

The My Living Will online portal is hosted by the Charity Centre for Innovation and Voluntary Action.

As the future is uncertain and death is inevitable choices and control at the end of life is something that we all need to consider.

Take for example a person who has capacity but has been diagnosed with dementia which is likely to progressively get worse. Should this person create an advanced decision clearly setting out which treatments he would want to refuse and he has also stated at what point in the course of his dementia he would want his advanced decision to come into effect for example when he was unable to recognise himself in the mirror or not recognise individual members of the family. His wishes would be taken into account.

Our firm specialises in healthcare law, family law and deals with Wills and Lasting Power of Attorneys. Should you require any advice please do not hesitate to contact our panel of experts.

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