Until recently, no-one was legally authorised to consent or refuse particular medical treatment on behalf of an adult lacking capacity and there was no statute directly governing the use of advance directives in the United Kingdom. Advance directives had legal status in England and Wales under Common Law but an advance directive concerning a person’s treatment for mental disorder would not be legally binding if the person who made it was subject to compulsory powers under the Mental Health Act 1983. However, an advance directive concerning a physical disorder unrelated to the mental disorder would not be affected by a person’s detention under the Mental Health Act.

In April 2005, the Mental Capacity Bill received Royal Assent and became the Mental Capacity Act 2005. It provides a statutory framework in England and Wales for people who may not be able to make their own decisions due to a mental health problem, a learning disability or an illness such as dementia. Sections 24 to 26 deal with advance decisions to refuse treatment. Other decisions are presumably covered by common law provisions governing consent to treatment.

Conditions surrounding the writing, validity and registering of an advance directive

A person must be over 18 and have sufficient capacity to make an advance directive. This means that a person may lack capacity in one domain (e.g. to make financial decisions), but still be considered capable of writing an advance directive. Capacity is presumed but in case of doubt, it can be established by a court of law. Although advance directives are usually written documents, they may also be witnessed oral statements, signed printed cards or discussion notes recorded in patients’ medical files. Advance directives do not need to be witnessed by a solicitor and there is no registration procedure.

In England and Wales, people under the age of 18 can make advance directives but they are not legally binding.

With specific reference to advance directives containing decisions to refuse treatment, the Mental Capacity Act 2005 has the following conditions (§25):

(1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P (the person who made the advance directive) unless the decision is at the material time (a) valid, and (b) applicable to the treatment.

(2) An advance decision is not valid if P -

(a) has withdrawn the decision at a time when he [sic] had capacity to do so,

(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or

(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.

(3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it.

(4) An advance decision is not applicable to the treatment in question if -

(a) that treatment is not the treatment specified in the advance decision,

(b) any circumstances specified in the advance decision are absent, or

(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them

(5) An advance decision is not applicable to life-sustaining treatment unless -

(a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and

(b) the decision and statement comply with subsection (6).

(6) A decision or statement complies with this subsection only if -

(a) it is in writing,

(b) it is signed by P or by another person in P's presence and by P's direction,

(c) the signature is made or acknowledged by P in the presence of a witness, and

(d) the witness signs it, or acknowledges his signature, in P's presence.

(7) The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable.

What an advance directive can cover

Advance directives can include decisions relating to:

• Treatment of medical conditions;
• Treatment of psychiatric conditions;
• Care and welfare decisions;
• Life-supporting treatment;
• Life-saving treatment;
• Appointment of a health care proxy and
• Research

but not the refusal of basic care (procedures essential to keep the person comfortable, e.g. warmth, shelter, pain relief and the management of distressing symptoms), the offer of food and drink by mouth or requests for euthanasia or unreasonable treatment.

Obligation to comply with instructions contained in an advance directive

To be considered legally binding, an advance directive must be clear, unambiguous and reasonably proximate. Doctors have a legal and ethical obligation to act in the best interests of patients which in addition to clinical factors involves taking into account the past and present wishes of patients. Advance directives are binding only when they concern the refusal of treatment. General statements or preferences should be taken into account and respected if appropriate but they are not legally binding. Section 4 (6) of the Mental Capacity Act states that in determining what is in a person’s best interests, the person making the determination “must consider, so far as is reasonably ascertainable,

a) the person’s past and present wishes and feelings (and in particular, any relevant written statement made by him [sic] when he had the capacity)

b) the beliefs and values that would be likely to influence his decision if he had capacity, and

c) the other factors that he would be likely to consider if he were able to do so.”

In all cases, a contemporaneous decision by a competent person overrides any decision made in an advance directive. As competence is not an all-or-none affair, it should also be possible to challenge or express disagreement with a particular decision recorded in an advance directive provided that the person has sufficient capacity with regard to that decision. Doctors should comply with advance directives even if they go against their personal beliefs or values. They may arrange for a colleague to take over a patient’s treatment but if this is not possible, they must comply with a valid advance directive.

Concerning advance decisions to refuse treatment, the Mental Capacity Act (section 26, §5) states “Nothing in an apparent advance decision stops a person – (a) providing life-sustaining treatment , or (b) doing any act he [sic] reasonably believes to be necessary to prevent a serious deterioration in P’s condition, while a decision as respects any relevant issue is sought from the court.”

Amending, renewing and cancelling advance directives

An advance directive can be amended or cancelled at any time provided that a person has the capacity to do so. A withdrawal, partial withdrawal or alteration of an advance decision to refuse treatment need not be in writing unless it refers to life-sustaining treatment (Mental Capacity Act, Section 24, §§4-5)