September 2023: A new section 1, Advance Care Planning, has been added to reflect guidance contained in ‘Universal principles for advance care planning’ which was published in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’.
CONTENTS
1. Advance Care Planning
Advance Care Planning (ACP) is a process of discussions which an adult can choose to have with their care providers about their preferences and priorities for their future care, while they have the mental capacity to be able to have such meaningful conversations. The process, which is person-centred and likely to involve a number of conversations over time, should include whoever the adult wishes to involve, including family members or friends.
The process will enable the adult to feel more involved in their care and treatment and gives them the opportunity to reflect and share with those involved what matters most to them.
The result of these discussions may include the adult deciding one, or more, of the following:
- an advance statement – of their wishes, preferences and priorities, and may include agreeing who would be their named spokesperson (see Section 2, Advance Statements);
- an Advance Decision to Refuse Treatment (see Section 3, Advance Decision to Refuse Treatment);
- nominating a person to be their Lasting Power of Attorney for health and welfare who is legally able to make decisions on their behalf, including life sustaining treatment if the adult does not have mental capacity at that time (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian);
- treatment recommendations such as what treatment they may want in specific situations such as emergency care, needing resuscitation etc (see Section 4, Do Not Resuscitate).
1.1 Universal principles
The following are the universal principles of ACP and describe ‘what good looks like’ in advance care planning:
- The adult is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
- The adult has personalised conversations about their future care, focused on what matters to them and their needs.
- The adult agrees the outcomes of their advance care planning conversation through a shared decision making process in partnership with relevant professionals.
- The adult has an advance care plan which records what matters to them and their preferences and decisions about future care and treatment, that they can share with others.
- They have the opportunity, and are encouraged, to review and revise their advance care plan.
- Anyone involved in the adult’s advance care planning process is able to speak up if they feel that these universal principles are not being followed.
2. Advance Statements
An advance statement is a written statement that sets down a person’s preferences, wishes, beliefs and values regarding their future care. Its aim is to provide a guide to anyone who might have to make decisions in the person’s best interests if they lose the ability to make or communicate decisions.
A health or social care professional making a best interests decision on behalf of an adult who lacks mental capacity must take into account any advance statement that has been made, as laid down in the Mental Capacity Act (MCA). However, the advance statement is an expression of the person’s preferences and is not legally binding for a health or social care professional.
It may be difficult to challenge a healthcare professional’s decision to disregard the adult’s wishes, because they can argue they have considered the advance statement but were acting in the person’s best interests (see Best Interests chapter).
3. Advance Decision to Refuse Treatment
An advance decision is different from an advance statement. An advance decision is a document which contains a statement that stands even if the person’s life is at risk, such as where the person has refused life sustaining (continuing) treatment. This is laid out in the MCA.
The advance decision is designed to express the desires of a person who may later lack mental capacity to refuse all or some medical treatment, and overrides the best interests test. It is legally binding provided the criteria described in the MCA are met.
In relation to refusal of treatment, the advance decision must be:
- can only apply to refusal of treatment;
- must be written;
- must be made when the person has capacity;
- must be made by a person who is over the age of 18 years and it has been witnessed.
The MCA says the advance decision is not applicable to life sustaining treatment unless:
“it contins a statement … that it is to apply … even if the life is at risk” when the refusal relates to life sustaining treatment (MCA Part 1 section 25(5) (a)). The advance decision is not binding if the circumstances it describes are not explicit.
An advance decision is not applicable to life sustaining treatment if:
- the treatment is not the treatment specified in the advance decision;
- any circumstances specified in the advance decision are not present;
- there are reasonable grounds for believing that circumstances exist which the person did not anticipate at the time of they made the advance decision and which would have affected their decision had they anticipated them (MCA Part 1 Section 25 (4)).
An advance decision is not valid if the person:
- withdraws the advance decision when they have mental capacity;
- has created a lasting health and welfare Power of Attorney after the advance decision was made which gives the attorney power to make decisions regarding life sustaining treatment (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian);
- has done something which is clearly inconsistent with the decision.
Practitioners should be clear that advance decisions are different from advance statements.
3.1 End of life
At end of life, the best interest test applies when a patient does not have the mental capacity to make their own decisions (see Best Interests chapter). This can be a result of losing mental capacity (see Mental Capacity and Code of Practice chapter), or through a loss of consciousness (temporary or permanent). It will cover decisions relating to palliative care (in the case of serious or life-threatening disease) and withdrawing treatment.
In the absence of a legitimate advance decision or health and welfare Lasting Power of Attorney (LPA), the decision on which treatments should or should not be provided should be made by the healthcare professionals, not the person’s relatives.
The healthcare professional must decide what is in the person’s best interests, taking all the relevant medical and non-medical circumstances into account.
4. Do Not Resuscitate
See also Advance Decision to Refuse Treatment (NHS)
DNACPR stands for do not attempt cardiopulmonary resuscitation. DNACPR is sometimes called DNAR (do not attempt resuscitation) or DNR (do not resuscitate) but they all refer to the same thing.
Everyone has the right to refuse CPR if they do not want to be resuscitated, if they stop breathing or their heart stops beating.
Where a do not resuscitate decision has been made in advance, it will recorded on a special form and kept in the person’s medical records. A DNACPR order is not permanent; it can be changed at any time.
People’s views and wishes may also be recorded in their LPA (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian below) or advance decision documents (see Section 3, Advance Decisions).
People who have a serious illness or are undergoing surgery that could cause respiratory or cardiac arrest, should be asked by a member of the medical team about their wishes regarding CPR if they have not previously made their wishes known. This should take place before they have surgery.
People should always be advised to discuss such decisions with their family or other carers, so that it is not a surprise to them should the situation arise.
If the person does not have the mental capacity to decide about CPR when a decision needs to be made (see Mental Capacity and Code of Practice chapter) and have not made an advance decision to refuse treatment, the healthcare team should consult with their next of kin about the person’s wishes so a decision can be made in their best interests (see Best Interests chapter).
Medical staff have a legal duty to consult and involve patients in a decision to place a ‘Do Not Resuscitate’ (DNR) order on a their medical notes. Patients should always be involved in a DNR decision. There must be a convincing reason not to involve the patient, otherwise a failure to consult with them may breach their human rights. Causing potential distress to a patient is not a good enough reason not to consult with them.
5. Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian
5.1 Lasting Power of Attorney
Any person who has the mental capacity to understand the nature and implications of doing so may appoint another person/s to look after their affairs on their behalf. This power may be changed by the donor (the person) at any time.
A Lasting Power of Attorney (LPA) is a legal document which allows an adult to appoint an attorney/s to act on their behalf if they should lose mental capacity in the future. It enables the person to instruct an attorney to make decisions about their property and affairs and / or health and welfare decisions. Attorneys, in this case, can be family members or friends, who have to be registered with the Office of the Public Guardian. See Make, Register or End a Lasting Power of Attorney (gov.uk)
5.2 A Court Appointed Deputy and the Court of Protection
A Court Appointed Deputy is appointed by the Court of Protection (CoP). The Court of Protection has the the authority to make decisions on financial or welfare matters for people who cannot make decisions at the time they need to be made (because they lack mental capacity). Depending on the terms of their appointment, Court Appointed Deputies can take decisions on welfare, healthcare and financial matters as authorised by the CoP but they are not able to refuse consent to life sustaining treatment (see Section 2, Advance Decision to Refuse Treatment).
Any decisions made by the CoP can be challenged; for example where it is believed that a deputy is not acting in the best interests of the person they are representing and there are safeguarding concerns as a result.
5.3 Office of the Public Guardian
The Office of the Public Guardian (OPG) is the body which registers authority for LPA’s and court appointed deputies. It supervises deputies appointed by the CoP and provides information to help it make decisions. The OPG also works with other agencies, for example the police and adult social care, to respond to any concerns raised about the way in which an attorney or deputy is behaving.
5.4 Abuse by an Attorney or Deputy
If someone has concerns about the actions of an attorney who is a registered LPA or a deputy appointed by the CoP, they should contact the OPG. The OPG can investigate the actions of a deputy or attorney and can also refer concerns to other relevant agencies. For more information, see Report a Concern about an Attorney, Deputy or Guardian (gov.uk).
6. Further Reading
6.1 Relevant chapters
6.2 Relevant information
Universal Principles for Advance Care Planning (NHS)
Advance Decisions (Living Will)
