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A GP guide to advance decisions to refuse treatment

Dr Janet Page and Dr Richard Brittain look at the practical aspects of advance decisions

The use of advance decisions is likely to grow as people become more aware of the concept and personal electronic records inform doctors of their existence.

A properly constructed advance decision should bring clarity to the treatment of patients who lack capacity and reassure patients and doctors that care provided is not going beyond that which is desired.

There are two legal mechanisms by which individuals can direct future treatment choices if they lose their capacity to make such decisions. These mechanisms under the Mental Capacity Act 2005 are ‘advance decisions to refuse treatment' and ‘lasting powers of attorney' (LPA).

LPAs involve a formal nomination by a ‘donor' of one or more ‘attorneys' who will make health and financial decisions on behalf of the donor if they lose capacity at some point in the future. These arrangements need to be registered with the Office of the Public Guardian to be enforceable.

Advance decisions to refuse treatment are also known as ‘advance directives' or ‘living wills'. By making an advance decision an adult (aged over 18) can specify treatment that they would decline, or wish to be stopped, in particular circumstances when they do not have the capacity to make such a decision.

‘Advance statement' is a term usually used for documents which are not legally binding, but which set out broad principles regarding how an individual would wish to be treated.

Making an advance decision

If patients wish to discuss making an advance decision, consider the following:

• An individual must have capacity to make an advance decision. Under the Mental Capacity Act, an individual is presumed to have capacity unless otherwise established. If there is doubt, the statutory test is:

– does he or she understand the nature, purpose and effect of an advance decision, can he or she retain this information for as long as is necessary to consider the information and can he or she then communicate a decision? Documentation of this is useful if the advance decision were to be challenged.

• The reasons for making the decision need to be clear. Treatment cannot be declined for disorders which are compulsorily treatable under mental health legislation, so consider carefully whether a treatable psychiatric disorder underlies the desire to create an advance decision.

A discussion about disease prognosis and end-of-life care can help make patients aware that, in the absence of an advance decision, treatment will be based on their best interests with input from relatives and friends.

The potential for undue influence from family or friends to create an advance decision should also be addressed, and the following should be established:

• The limits – an advance decision cannot demand specific treatment nor request that an illegal act be carried out, such as assisting suicide.

• The wording – an advance decision that declines the use of life-sustaining treatment must be written, signed (or acknowledged), witnessed and explicitly state that it applies even where life is at risk. Other advance decisions can be made verbally and the treatment and circumstances covered by the decision may not be clear. Legal input will help ensure that advance decisions are as clear and unambiguous as possible.

• How it will be communicated – a prominent up-to-date entry in GP records may suffice for primary care, but secondary care professionals may need to be provided with a current version of the decision at each admission. It should be regularly reviewed by the patient while they maintain capacity.

• Whether an LPA might be more appropriate – the patient's disease and concerns may mean that an LPA is the better option, such as where future circumstances are not clear but the patient is able and willing to nominate an individual who can make specific treatment decisions when necessary. See for more information.

Using an advance decision

Several questions need to be asked before an advance decision can be relied on:

• Has anything happened which alters it? An LPA which has been created after an advance decision and covers the same issues ‘trumps' a previous advance decision. Alterations can be made to an advance decision, or it can be completely withdrawn, if the individual has capacity to make these changes. Amendments can be made verbally unless it relates to life-sustaining treatment, in which case they must be written.

• Where a patient has taken action which contradicts a previous advance decision, this can alter whether it is followed. An advance decision can also be affected if new circumstances would have influenced it had they been anticipated by the patient – for example, pregnancy.

• Is it interpretable? An advance decision must relate to specific treatment and circumstances. Where it is not possible to apply the advance decision to a treatment decision or to particular circumstances it should not be used, nor adapted to fit the situation. Where there is a lack of clarity regarding the existence, validity or interpretation of an advance decision, treatment which sustains life or prevents a serious deterioration can be undertaken while a court decision is sought regarding the unclear issues. A judge cannot overturn a valid and applicable advance decision.

• Is it able to be implemented? If a patient maintains capacity clearly, an advance decision cannot be used. Certain basic types of nursing care cannot be declined, but artificial nutrition and hydration can. If a refused treatment is given by someone who is satisfied that a valid and applicable advance decision exists, they may be sued or prosecuted for providing the treatment.

Dr Janet Page is medicolegal adviser and Dr Richard Brittain is medicolegal assistant at the Medical Protection Society

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