There is no statute directly governing the use of advance directives in the United Kingdom. However, the Department of Health’s Reference Guide to Consent for Examination or Treatment (2001) contains the following section on advance refusals of treatment which provides more precision:

“While professionals cannot be required by such directives to provide particular treatments (which might be inappropriate), case law is now clear that an advance refusal of treatment which is valid and applicable to subsequent circumstances in which the patient lacks capacity is legally binding. An advance directive is valid if made voluntarily by an appropriately informed person with capacity. Failure to respect such an advance refusal can result in legal action against the practitioner.”

The Adults with Incapacity (Scotland) Act 2000 is the main legislation on proxy decision making for adults with incapacity in Scotland but it makes no reference to advance directives. It covers financial decisions (except wills) and welfare decisions, which include all health care, except compulsory treatment for mental disorder under the Mental Health (Scotland) Act 1984. In the Adults with Incapacity (Scotland) Act 2000, an advance refusal does not seem to have a direct effect. Rather, a person needs to ensure that their guardian/welfare attorney is aware of their wishes and it is the refusal of the guardian/welfare attorney of the treatment in question that is binding – subject to appeals procedures etc.

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. They must be witnessed by a solicitor and registered with the office of the Public Guardian.

In Scotland, to appoint a health care proxy (i.e. a welfare attorney), a person must be aged 16 or over and must obtain a certificate from a solicitor confirming that they understand what is involved and are not acting under undue influence.

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.

According to the Adults with Incapacity (Scotland) Act 2000, health care proxies must be consulted about treatment decisions unless it is impracticable or unreasonable to do so.

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.

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.

Section 1 of the Adults with Incapacity (Scotland) Act 2000 provides five Principles, which must be followed by those who intervene in the finances or welfare of an adult with incapacity under the terms of the Act. The third Principle requires that anyone intervening must take into account the ‘past and present wishes and feelings’ of the adult as far as these are ascertainable. The final decision on what action to take rests with the person given responsibility for the intervention under the Act. This may be an attorney appointed by the adult when capable, a doctor authorised to give medical treatment, a researcher, an intervener or a guardian.

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.

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.