Date updated: Monday 28th February 2011

The term “Living Will” is used to cover a variety of documents. It is not a technical term but is generally taken to describe a document which sets out your wishes regarding your future medical care or treatment which is to be referred to at a time when you are incapable of expressing your wishes.

It has been taken to cover:

An advance decision to refuse treatment, taken at a time when you are mentally competent, to take effect at a time in the future when you are not mentally competent. Such wishes can be binding if they are found to be valid and applicable under the Mental Capacity Act 2005 (see below).

A general statement of your wishes regarding your future care or treatment. A general statement by its nature is not binding but should be taken into account by your doctors when deciding whether a particular treatment is in your best interests.

An advance directive - a request or a demand for a particular treatment. An Advance directive is not binding. A patient cannot insist that a particular treatment is carried out.

Health care proxy. The appointment of an individual to make health care decisions on your behalf. It is now possible to appoint somebody to make decisions regarding your medical treatment under a Lasting Power of Attorney.

It is a basic principle of English law that a mentally competent person can refuse medical treatment even if this is sure to lead to their death. Medical professionals have a duty to respect a competent patient’s autonomy to make decisions in relation to their treatment. The validity of an advance decision is therefore an extension of this principle. Generally there is no prescribed form for an advance decision. It can be oral or in writing however, it must be in writing if it relates to the refusal of life sustaining treatment and has to state that you refuse life sustaining treatment even if your life is at risk as a result. The statement must be signed, dated and witnessed.

The Mental Capacity Act 2005 mirrored the existing law in this area and brought in safeguards. An advance decision is binding if it is valid and applicable.

Validity

An advance decision is not valid if:

(i) Patient was not mentally competent when it was made or was coerced into making it.

(ii) Authority has subsequently been granted to someone under a Lasting Power of Attorney (see below) which confers authority on that person to give or refuse consent to the treatment to which that advance decision relates.

(iii) It has been withdrawn, overridden or the person who has made it has subsequently done something inconsistent with that decision.

Example (taken from draft Code of Practice to the Mental Capacity Act 2005)

A young man, whose friend has been in Persistent Vegetative State for a number of years, made a written advance decision refusing any treatment to keep him alive by artificial means. A few years later, he is seriously injured in a road traffic accident and is paralysed from the neck down and is only able to breathe with artificial ventilation. Initially he remains conscious and is able to consent to treatment on being taken to hospital. He participates actively in a rehabilitation programme. Some months later he loses consciousness. It is at this point that his written advance decision is located, though he has not mentioned it during his treatment. His previous consent to treatment and rehabilitation place considerable doubt on the validity of the advance decision because it is clearly inconsistent with his actions prior to his lack of capacity.

Applicability

An advance decision is not applicable:

(i) to a particular treatment if you have mental capacity to give or refuse consent at the time. It only comes into play if you lack capacity.

(ii) if the treatment specified in the decision is not the particular treatment in question.

(iii) if any circumstances specified in the advance decision are absent.

(iv) if there are reasonable grounds for believing that circumstances exist which you did not anticipate at the time and which would have affected your decision had you anticipated them. This is generally taken to refer to advances in medical science.

Example (taken from draft Code of Practice to the Mental Capacity Act 2005)

Mr A is HIV Positive and some years ago began to experience AIDS – related symptoms. Though willing to consent to standard treatment, for instance during a bout of pneumonia, he was initially unwilling to try the new retro-viral treatments, saying he didn’t want to be a guinea pig for the medical profession. He made an advance decision refusing specific retro-virals were he to be incapable of giving or refusing consent in the future. Five years later he was suddenly admitted to hospital seriously ill and was drifting in and out of consciousness. Doctors examining his advance decision considered that the advances in knowledge surrounding the retro-viral options had been significant since Mr A made his advance decision. They talked to his partner about the advance decision. Both parties agreed that Mr A was not fully up-to-date on the research in this area and would have changed his mind if he had capacity to discuss it with the doctors on this occasion. They decided the advance decision to refuse was therefore invalid and gave him retro-virals as part of his treatment.

Keeping up to date

Advance decisions should be regularly reviewed to avoid the suggestion that the decision was withdrawn, or that circumstances now exist that were not anticipated at the time which would have affected the decision. It is a very good idea to discuss your decision with your doctor, family and close friends.

A written advance decision is a good record of your wishes but care has to be taken when drawing one up to ensure it will be found valid and applicable. Stone King can help draw up a document for you. Commercial forms are also available such as those produced by Dignity in Dying ( formerly the Voluntary Euthanasia Society’ ).

Lasting Powers of Attorney

A Lasting Power of Attorney (LPA) is a document by which you grant one or more people legal authority to make decisions on your behalf. There are two types of LPA, one for Property and Affairs which grants authority to make decisions regarding financial matters; and a Health and Welfare LPA which grants authority to make decisions on personal matters including medical treatment.

In relation to your welfare, the person you appoint can only act if you are not capable of making that decision for yourself and they must make decisions in your ‘best interests’. A person appointed under a LPA can only make decisions about life sustaining treatment if they are specifically authorised to do so under the power. A later Advance Decision in relation to a particular treatment will override a LPA and vice versa.