3.5 What is an advance decision to refuse treatment?

During the course of an individual’s advance care planning (ACP) discussion they may indicate that they wish to make an advance decision to refuse certain treatments.

This is a separate document to that of the ACP and must be instigated by a professional who is competent in this process. They are required to follow the guidance available in the Code of Practice for the Mental Capacity Act (MCA) on advance decision to refuse treatment (ADRT) in England, Wales and Northern Ireland. In Scotland professionals must follow guidance available in the Adults With Incapacity Act (2000).

  • An advance decision to refuse treatment allows the person who is over 18 years of age to specify (before loss of capacity) what treatments they would not want and would not consent to later in life. In Scotland the age of advanced directives is 16. They cannot demand certain treatments or refuse basic care, ie food, warmth, shelter and hygiene. But clinically assisted nutrition and hydration given by intravenous, subcutaneous or gastroscopy are considered medical interventions and can be refused. These decisions can be withdrawn if the individual gains or retains capacity.
  • All healthcare providers must respect the individual’s advance decision and ensure it is incorporated into the person centred care planning. They will also have discussed who is to be made aware of the ADRT (ie family members) and where they wish to store it in the home. A copy of the document should be stored in their healthcare notes and their GP made aware.

For more detailed information see National End of Life Care Programme (2013) Advance decisions to refuse treatment: A guide for health and social care professionals. [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]

The following table (you need to click the link 'view large table') shows the differences between general care planning and decisions made in advance. It explains the who, what and how of the procedures necessary to activate advance care planning (ACP), advance decision to refuse treatment (ADRT) and do not attempt CPR (DNA CPR).

  General Care Planning Advance Care Planning (ACP) – advance statement Advance Decisions to Refuse Treatment (ADRT) Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
What is covered? Can cover any aspect of current health and social care. Can cover any aspect of future health and social care. Can only cover refusal of specified future treatment. May be made as an option within an advance care planning discussion. Only covers decision about withholding future CPR.
Who completes it?

Can be written in discussion with the individual who has capacity for those decisions.

OR

Can be completed for an individual who lacks capacity in their best interests.

Is written by the individual who has capacity to make these statements. May be written with support from professionals, and relatives or carers.

Cannot be written if the individual lacks capacity to make these statements.

Is made by the individual who has capacity to make these decisions. May be made with support from a clinician.

Cannot be made if an individual lacks capacity to make these decisions.

Completed by a clinician with responsibility for the patient. Patient consent is sought only if an arrest is anticipated and CPR could be successful.

Can be completed for an individual who does not have capacity if the decision is in their best interests.

What does it provide? Provides a plan for current and continuing health and social care that contains achievable goals and the actions required. Covers an individual’s preferences, wishes, beliefs and values about future care to guide future best interest decisions in the event an individual has lost capacity to make decisions. Only covers refusal of future specified treatments in the event that an individual has lost capacity to make those decisions.

Documents either:

  • That CPR cannot be successful and should not be attempted,
  • An individual’s advance decision to refuse CPR.
Is it legally binding? No – advisory only. No – but must be taken into account when acting in an individual’s best interests. Yes – legally binding if the ADRT is assessed as complying with the Mental Capacity Act and is valid and applicable. If it is binding it takes the place of best interest decisions about that treatment. Yes – if it is part of an ADRT. Otherwise it is advisory only, ie clinical judgement takes precedence.
How does it help? Provides the multidisciplinary team with a plan of action. Makes the multidisciplinary team aware of an individual’s wishes and preferences in the event that the patient loses capacity. If valid and applicable to current circumstances it provides legal and clinical instruction to multidisciplinary team. Makes it clear whether CPR should be withheld in the event of a cardiac or respiratory arrest.
Does it need to be signed and witnessed? Does not need to be signed or witnessed. A signature is not a requirement, but its presence makes clear whose views are documented. For refusal of life sustaining treatment, it must be written, signed and witnessed and contain a statement that it applies even if the person’s life is at risk. Does not need to be witnessed, but the usual practice is for the clinician to sign.

Who should see it?

The multidisciplinary team as an aid to care. Patient is supported in its distribution, but has the final say on who sees it. Patient is supported in its distribution, but has the final say on who sees it. Clinical staff who could initiate CPR in the event of an arrest.

The discussions around ACP and inclusion of types of treatment the individual wishes to have or not have direct the palliative and end of life care in such a way as to improve the individual’s experience at end of life and also that of those close to them.

3.4 What is enduring power of attorney?

3.6 Person centred care