Since the introduction of the Mental Capacity Act 2005 the concept of a living will or advanced directive has been replaced by an advance decision to refuse treatment. This allows a person to state that a particular treatment should not be carried out or continued if, at a later time and in specified circumstances, the patient lacks capacity to make that decision for themselves.
Any advance directive that was made prior to the Mental Capacity Act coming into force may still be valid under the Act, but no new directives can be made following its introduction. Patients wishing to set out what care they would want, or not want, to receive in the future, will need to make an advance decision.
Advance decisions can only be made by a person aged 18 or older and the patient must have the appropriate mental capacity. If you are asked by a patient to assist them in preparing such a decision, you must have assessed capacity and be satisfied the patient has the necessary ability to make the decision. However, the patient must also understand the limitations of any decision they make.
Under the advance decision, treatment can be refused except for actions needed to keep a patient comfortable, such as offering food or water by mouth and providing warmth and shelter. A patient can refuse life sustaining treatment providing this is in writing and signed by them and a witness, whereas other refusals can be made verbally.
If you have been asked to witness a written advance decision, or discuss a verbal one, it is a good idea to keep a copy or a record of the discussion in the patient’s notes. Advise the patient to make their local hospital aware of their decision and keep a copy of it with them in the event of an emergency.
The patient should be made aware of the possibility that an emergency may arise where their advance decision is not, or cannot, be brought to the attention of those treating them and if this is the case, and assuming the patient lacks capacity, treatment will be given in what is believed to be in their best interests.
Patients need to be aware that the validity of an advance decision would be in question if they had since acted outside the limits of their decision, for example, by accepting treatment that they said they would want to refuse when drawing up their advance decision.
A decision would also be made invalid if a patient has subsequently arranged a lasting power of attorney for health and welfare, giving someone else the power to make the same decisions once the patient loses capacity.
Patients can face difficulties in making a valid advance decision which need to be very specific to the circumstances. A patient cannot predict the future and therefore it is difficult to cover every eventuality in their decision.
Patients who have a chronic or terminal illness are generally better placed to provide specific details of what treatment they would or would not want. Where a patient is fit and well at the time of making the advance decision, it is very difficult to draw up a valid decision covering all the necessary specific circumstances, as the anonymised case study below shows.
If there is any doubt, it may result in the treating doctor or team reaching the view that the advance decision is not valid. Doctors going against a valid advance decision could face a claim for battery or criminal charge of assault and therefore it is sensible to get advice from the MDU or your medical defence organisation, if time allows, before concluding that a decision is no longer applicable.
If a patient has expressed a wish to have certain treatments or interventions, as opposed to refusing treatment, this should be taken into account but does not have to be followed if it is not felt to be an appropriate course of action. Patients cannot use an advance decision to demand treatment which is thought to be futile.
A patient whose parents both died from terminal illnesses asks their GP to help him make an advance decision. Although he has no medical problems at the moment and is generally fit and well, he wants it on record that he would not want treatment if he was terminally ill and couldn’t make decisions for himself. The GP feels uncomfortable about this as the patient is currently well and wonders how best to advise him.
For an advance decision to be valid and applicable the treatment being refused needs to be specified as do the individual circumstances of the decision itself.
While a patient with a condition such as motor neurone disease can reasonably foresee what clinical course their illness is likely to take, this patient is well so would have difficulty creating a valid advance decision that could cover every eventuality. If there are reasonable grounds to suspect that circumstances exist that the patient would not have anticipated this may invalidate the decision.
Rather than an advance decision the patient may be better placed to arrange a lasting power of attorney (LPA) for their personal welfare, which would include medical treatment. The patient could appoint an attorney who could make certain decisions on their behalf. This would only apply once the patient had lost the capacity to make decisions for themselves and the attorney must act in the patient’s best interests.
The patient would need to ensure there was extra provision in the LPA to confirm that they authorised the attorney to make decisions about life-sustaining treatment, in addition to any other treatment they might require.