February 2020: A link has been added above to Consent and Refusal by Adults with Decision Making Capacity: A Toolkit for Doctors published by the British Medical Association and in Section 2, Treatment and Care towards the End of Life: Good Practice in Decision Making – Cardiopulmonary Resuscitation published by the General Medical Council.
1. Advance Decisions to Refuse Treatment
An advance decision (also known as an advance decision to refuse treatment / ADRT, or a living will) is a decision an adult can make now to refuse a specific type of treatment at some time in the future.
It enables their family, carers and health professionals know whether they would want to refuse specific treatments in the future. This means that everyone should understand the adult’s wishes should they lose their mental capacity and are unable to make or communicate those decisions themselves.
Some people may want to refuse certain treatment in some situations, but not others. This needs to be clearly stated in the advance decision. A person can refuse a treatment that could potentially keep them alive (life sustaining treatment), including being artificially ventilated and / or receiving cardio pulmonary resuscitation (CPR). The treatments that the person decides they do not want to receive in the future must also all be named in the advance decision. Individuals may wish to discuss such decisions with a doctor or nurse, who knows their medical history before making an advance decision.
People may make a decision in advance to refuse treatment if they should lose mental capacity in the future. It is made clear in the Mental Capacity Act 2005 that an advance decision will have no application to any treatment which a doctor considers necessary to sustain life unless: the decision is made in writing and it is signed by the person and witnessed. In addition, there must be an express statement that the decision stands “even if life is at risk”.
Further information is available from the NHS: Advance Decisions (Living Will).
2. Do Not Resuscitate
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 3, below) or Advanced Decision documents (see Section 1, 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).
3. 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 Decisions 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.
4. 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.