1. Introduction

This chapter outlines different types of provision in relation to their care and support that can be made in advance by a person in case they lose mental capacity at some time in the future, in order that their best wishes will be respected should that time come.

2. Advance Statements

An advance statement is where a person may express a desire to make provision for their care or welfare in the event they lose their capacity to make their own decisions. Advance statements were known previously as advance directives and can be written or verbal.

They do have to be explicit about a particular treatment, for example, they can be made by a commitment to follow a lifestyle choice.

A clinician making a best interests decision on behalf of a person who lacks mental capacity must take into account any advance statement, as specified in the Mental Capacity Act (MCA). The statement is an expression of preference and is not legally binding on the health or social care professional.

It may be difficult to challenge a health care professional’s decision to disregard the person’s wishes, however, they can argue it has been considered and they were acting in the person’s best interests (see Best Interests chapter).

2.1 End of life

See also End of Life Care chapter

At end of life, the best interest test applies when a patient does not capacity to make their own decisions. It can be through loss of capacity in accordance with the MCA or through loss of consciousness (temporary or permanent). This will cover decisions relating to palliative care and withdrawing treatment.

In the absence of a valid advance decision or health and welfare LPA, the decision on which the treatment should or should not be provided rests with the health care professionals, not the relatives.

The health care professional must determine what is in the patient’s best interest taking all the relevant circumstances into account – medical and non-medical

3. Advance Decisions

An advance decision is different from an advance statement. An advance decision is a document which contains a statement that applies even if the person’s life is at risk; where the refusal relates to life sustaining treatment. This is specified in the MCA.

The document is designed to express the desires of a person who lacks capacity to refuse all or some medical treatment and overrides the best interests test.

The document is legal binding provided the criteria under the MCA are met which are as follows. It:

  • can only apply to refusal of treatment;
  • must be written;
  • must be made when the person has capacity;
  • must be made by a person over the age of 18 years and has been witnessed.

The MCA says the document must contain “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 the treatment in question if:

  • the treatment is not the treatment specified in the advance decision;
  • any circumstances specified in the advance decision are absent;
  • there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them ( MCA Part 1 Section 25 (4)).

An advance decision is invalid if the person:

  • withdraws the advance decision when they have capacity;
  • has created a lasting health and welfare Power of Attorney after the advance decision 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.

Advance decisions must be distinguished from advance statements.

4. Do Not Resuscitate

See also Refusing Cardio Pulmonary Resuscitation (CPR) in Advance (NHS) 

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 the decision has been made in advance it will be recorded on a specific form known as a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision, or a DNACPR order. This should be placed in the adult’s 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 Last Powering of Attorney (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian below) or Advanced Decision documents (see Section 3, Advance Decisions above).

It is useful if the person is able to discuss their decision with their family or other carers, so that it is not a surprise to them should the situation arise.

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.

If people do not have the mental capacity to decide about CPR when a decision needs to be made (see Mental Capacity) and have not made an advance decision to refuse treatment (see Making Advance Decisions), the healthcare team should consult with their next of kin about the persons wishes to make a decision in their best interests (see Best Interests).

Please note: The Court of Appeal in Tracey v Cambridgeshire NHS Foundation Hospital Trust (2014) held that medical staff  have a legal duty to consult and involve patients in a decision to place a ‘Do Not Resuscitate’ (DNR) order on a patient’s medical notes. The Court held there should be a presumption in favour of patient involvement; there must be a ‘convincing reason’ not to involve the patient, and a failure to consult may breach the patient’s human rights. Causing potential distress to a patient was held not to be a good enough reason not to consult, although a patient’s human rights were unlikely to be breached if doctors decided not to consult because they believed this would cause physical or psychological harm. The Court also found the use of DNR notices in the absence of a clear and accessible policy would not comply with human rights legislation, as this would undermine the right of patients to be consulted. Policies should be directed at patients and copies automatically given to them and their families. See also Elaine Winspear v City Hospitals Sunderland NHS Foundation Trust (2015).

5. Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian

Any person who has the capacity to understand the nature and implications of doing so may appoint another person(s) to administer their affairs on their behalf either generally or limited to specific issues. This power may be removed or limited by the donor at any time.

A Lasting Power of Attorney (LPA) allows an adult to appoint an attorney to act on their behalf if they should lose mental capacity in the future and permits the person to instruct an attorney to make decisions about their property and affairs and / or health and welfare decisions.

A Court Appointed Deputy is appointed by the Court of Protection (CoP). The Court of Protection has the same powers, rights, privileges and authority as the High Court and has jurisdiction in relation to welfare decisions as well as management of property and affairs. The Court can make declarations as to whether a person has or lacks capacity, and the lawfulness of any acts or omissions done or proposed to be done in relation to that person. 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 1, Advance Decision to Refuse Treatment).

It is important to note that 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 in relation to any concerns which relate to safeguarding concerns.

The Office of the Public Guardian (OPG) is the registering authority for LPA’s and deputies. It supervises deputies appointed by the Court and provides information to help the Court 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 operating.

5.1 Abuse by an Attorney or Deputy

If someone has concerns about the actions of an attorney acting under 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. When it makes a referral, the OPG will make sure that the relevant agency keeps it informed of the action it takes. The OPG can also make an application to the CoP if it needs to take possible action against the attorney or deputy.

Whilst the OPG primarily investigates financial abuse, it is important to note that that it also has a duty to investigate concerns about the actions of an attorney acting under a health and welfare LPA or a personal welfare deputy. The OPG can investigate concerns about an attorney acting under a registered LPA, regardless of the adult’s capacity to make decisions.