10. Advance Decision to Refuse Treatment

Advance decisions to refuse treatment: A guide for health and social care professional (NCPC and NHS, 2013)

End of Life Care

The courts recognise that adults have the right to say in advance that they want to refuse treatment if they lose capacity in the future, even if this results in their death. This is known as an Advance Decision to Refuse Treatment (ADRT).

It had previously been allowed in common law for years but is now part of statute in the Mental Capacity Act (MCA) 2005.

A person (the maker) can make one if they are 18 or older and have mental capacity.

An ADRT is also known as an Advance Decision, Advance Directive or a Living Will.

The maker can make their own ADRT or leave the decision to their Lasting Power of Attorney (LPA).

The maker may want to refuse a treatment in some situations, but not others so they need to be clear about all the circumstances in which they want to refuse this treatment.

The maker can only direct what they do not want, not what they do want.

ADRTs can be challenged but the person challenging should be sure of their facts in order to do so.

The maker must state precisely what treatment is being refused; general desires are not valid. It must set out the circumstances when the refusal should apply, but it can only be used if and after the person loses capacity.

The maker‘s wishes should be very clear. It is recommended legal advice is sought to ensure wishes are clearly and accurately expressed. The maker should also seek advice from a healthcare professional in relation to specific conditions.

If a professional is consulted, the discussion must be recorded in the maker’s case notes.

Written ADRTs should include:

• full details of the maker, including date of birth, home address, distinguishing features, if any;
• name and address of GP and whether they have a copy of the ADRT;
• statement saying the ADRT should be used once / if mental capacity is lost;
• clear statement of the decision, treatment to be refused and circumstances in which it applies;
• date of writing or review;
• the maker’s signature or signature of someone asked to sign on their behalf and in their presence;
• signature of person witnessing the signature if ADRT includes refusal of life sustaining treatment and their relationship to the maker (it is witness of signature only, not witness of capacity);
• statement that the maker understands their decision may put their life at risk (also witnessed with a signature);
• ADRT must be transcribed into the maker’s case notes, when professional/s become aware of it.

If the decision does not include refusal of life sustaining treatment, it can be made verbally, but must be officially recorded.

Professionals must record the ADRT in the maker’s case notes, stating it should apply when / if capacity is lost. A clear note should be made of the ADRT, the treatment being refused and the circumstances in which it should apply.

If the maker cannot sign, another person can sign for them at their direction and in their presence. As with a signature by the maker, the witness must be present when the third party signs.

The ADRT can refuse treatments necessary to sustain life, including artificial hydration and nutrition.

It cannot, however, refuse actions necessary for comfort, warmth, shelter, cleanliness, continence, oral offers of fluid and food, dressing malodorous wounds, relief of pain.

The ADRT does not require review, therefore decisions made a long time ago may still be valid. However, good practice dictates the maker should review their directive, as treatments and circumstances may change over time.

The maker can cancel the ADRT at any time either verbally or in writing, this should also be recorded when a professional becomes aware of this.

The ADRT takes precedence over LPAs and Court appointed deputies.

It must be followed even if the professional feels it is not in the maker’s best interests, except:

• if they appoint an LPA after the ADRT has been made and the requirement to adhere to the ADRT has not been made clear in the LPA;
• A court rules the ADRT invalid.

The rules about the interface between LPAs and ADRTs can become complex. It is therefore advised that the person making both a Health and Welfare LPA and an ADRT takes legal advice.

The maker is responsible for letting people know the ADRT exists.

The maker must be:

• aged 18 or over;
• have capacity when they make it.

The maker must not have done anything that clearly goes against their ADRT, for example been in the same position and accepted the same treatment.

The treatment and situation in the ADRT must apply. There have not been any changes in the maker’s personal life not anticipated in the ADRT. There have not been any changes in treatment/side effects which was the original reason for the maker’s ADRT.