Part 17 Advance Decisions and Advance Statements
An Advance Decision:
- is a legally binding statement refusing medical treatment
- can only be made by someone who is at least 18 years old and has the capacity to make that decision
- can only be made about medical treatment and not about personal care, nursing care or any other decisions
- can’t be made requiring or agreeing to a certain form of treatment: it can only refuse treatment.
- must be valid and applicable – valid means the person must have capacity at the point at which they make the decision; there must be no evidence of a change of mind and there must be no Lasting Power of Attorney or deputy with the power to make the decision. (Part 19: Lasting Powers of Attorney) If there is any doubt about the person’s capacity to make this decision it is good practice for a capacity assessment indicating their capacity to be recorded at the same time as they make their Advance Decision. Applicable means the decision must relate to the specific situation in which the treatment is being offered. It is possible for medical staff to disregard an Advance Decision if it is felt that progress in medical treatment means the Advance Decision is not relevant, or if the exact circumstances are not as stated.
- can be expressed in lay terms and does not have to be in writing. However, it is sensible for it to be fully recorded and for a copy to be placed on medical or care notes and anywhere else where it may be seen
- can only be acted on if the clinician has seen it – other staff may have a role in advocating for the person and making sure a doctor sees any relevant Advance Decision
- can be overridden if the person needs to be detained under the Mental Health Act.
An Advance Decision refusing electro-convulsive therapy cannot be overridden even if the person is detained under the Mental Health Act. The person can only be given such treatment in an emergency, to save their life. (MHA section 58a) (Part 31: The Mental Capacity Act and the Mental Health Act)
Life sustaining treatment
An Advance Decision can be made to indicate someone’s wish not to receive life sustaining treatment, such as resuscitation or mechanical ventilation.
If the Advance Decision relates to life sustaining treatment then the Decision must be in writing, signed and witnessed.
It is wise to make sure that such a Decision is copied into all medical or care notes and that the person carries a copy of it with them. Everyone who may be asked about such a Decision should be fully aware of it, what it says and where it is. It is wise to discuss it with all practitioners.
Do Not Attempt Resuscitation orders (DNAR)
These orders relate to a decision made in advance as to whether someone should be resuscitated in the event of a cardiac arrest.
If someone has capacity to make this decision they should make it for themselves and their wishes must be respected. If there may be doubts about their capacity it may be wise to record that they have capacity to make this decision. (Part 6: How to assess capacity) (Part 10: How to record decisions)
If someone doesn’t have capacity to make a DNAR a best interests decision can be made. This is serious medical treatment and a full assessment is needed before decisions are made. There needs to be an assessment of the person’s capacity to make the decision and a record of how the best interests decision has been reached. This will include speaking to the person’s family, but the family do not make the decision. If the person is unbefriended there will need to be a referral for Independent Mental Capacity Advocate representation and an evidence-based report before the decision is made. The decision-maker will be the doctor providing medical care. (Part 15: Independent Mental Capacity Advocates) (Part 6: How to assess capacity) (Part 7: Being a decision-maker) (Part 8: Best interests decisions)
If someone is in hospital the consultant will be the decision-maker and will lead the process. If someone is in the community the decision-maker will be their GP or the Palliative Care Team. Family members are never the decision-makers for this decision and should never be asked to make this decision.
It is important that any DNAR includes clear direction for any carers as to what to do in the event of someone collapsing. It is helpful to include directions for paramedic crews.
All decisions about such emergency care will need to be regularly reviewed.
If someone has previously been able to make their own decision but has now lost capacity their views should be taken into account. However a best interests decision will need to be made and this may not be the same as the person’s previous decision.
An Advance Statement can be made about any aspect of care or accommodation or lifestyle.
These statements would be considered as evidence of the person’s wishes when a best interests decision is being made, however an Advance Statement is not legally binding. For instance; it would be possible for someone to make an Advance Statement saying that they don’t want to go into residential care; if they later lose capacity and admission to care becomes an option, the Advance Statement would be taken into consideration but the refusal would not be legally binding. A best interests decision would be made after consideration of all the current relevant circumstances.
It is possible to use an Advance Statement to indicate what care or treatment someone would like to receive. People who have a relapsing problem with their mental health may know when they are well that a particular form of treatment is helpful, but may lose capacity to make that decision when they are unwell. It is possible to make an Advance Statement indicating choices about treatment; however, the decision about treatment would be made by the decision-maker at that time, who would pay due regard to any Advance Statements. (Part 8: Best interests decisions)