Advance decisions to refuse treatment may be made by individuals who anticipate that at some point in the future they may lack the mental capacity to make a decision. These decisions are legally binding and, except in circumstances clearly defined by the Mental Capacity Act 2005, must be followed, even when they will lead to a person’s death.
The subject of advance decisions to refuse treatment is covered in the Mental Capacity Act, Sections 24-27 code of practice, Chapter 9. The Act specifies the procedure for making advance decisions to refuse treatment. Where a person has made the decision to refuse life-sustaining treatment it must be put in writing and signed and witnessed.
All other advance decisions can be made verbally and need not be witnessed if they are in writing. The Act also distinguishes between advance decisions and other statements of an individual’s wishes. Although other statements of an individual’s wishes should always be taken into account in care planning, especially where they are in writing, they are not legally binding in the same way as advance decisions.
Under the Act, only people who have reached the age of 18 can make advance decisions. While 16 and 17-year-olds who have capacity may give or refuse consent to treatment at the time it is offered, they cannot make advance decisions under the Act. However, any views or preferences they express when they have capacity should be considered when making a best interests decision.
There are, however, instances where an advance decision might be disregarded. This would be the case if there are reasonable grounds for believing that a change in circumstances following an advance decision would have affected the decision if the change had been anticipated. For example, an individual who made a decision that they would not consent to resuscitation should the need arise, might not have anticipated the development of a new treatment that would enhance their quality of life following resuscitation.
Advance decisions may also be disregarded if a person makes a decision while they have capacity then acts in a way that is clearly inconsistent with that decision. For example, someone may make an advance decision requesting that resuscitation should not be used in a life-threatening situation, but then go on to face a life-threatening operation and request that resuscitation should be used if necessary. Should the person then lose capacity, doubt would be cast on the validity of the original decision, if the need for life-sustaining treatment should arise again.
There are special rules for people who are detained under the Mental Health Act 1983 in some circumstance, their refusal of treatment for a mental disorder may be overridden. However, when the advance decision concerns refusal of treatment for a physical health problem, the Mental Health Act is not relevant and the Mental Capacity Act applies.
It is vital that those who work with people who have made advance decisions to refuse treatment are able to recognise when a decision is both valid and applicable. A best interests decision to provide treatment cannot override a valid and applicable advance decision that refuses that treatment. Protection from liability will not apply if a valid and applicable decision is ignored.
The decision of an attorney acting under a registered Lasting Power of Attorney (LPA) will override a valid and applicable advance decision if the LPA has been made after the decision and gives the attorney the right to consent to or refuse the treatment specified.
LPAs replace Enduring Powers of Attorney (made under the Enduring Power of Attorney Act 1985). Under an LPA an individual can, while they still have capacity, appoint another person to make decisions on their behalf about financial, welfare or healthcare matters. The person making the LPA chooses who will be their attorney. They can give power to the attorney to make all decisions or they can choose which decisions they can make.
When acting under an LPA, an attorney has the authority to make decisions on behalf of the person who made it if they can no longer make these decisions for themselves. In these cases, an attorney is not there simply to be consulted (although they should still be consulted if appropriate where other decisions are being made). Attorneys must act in accordance with the Code of Practice.
An attorney could be a family member or a friend, or a professional such as a lawyer. The Code of Practice advises that health and social care staff should not act as attorneys for people they are supporting unless they are also close relatives of the person who lacks capacity. Attorneys, like everyone else, are always subject to the provisions of the MCA, particularly the core principles and the best interests requirements.
When are advance decisions valid?
An advance decision is valid when:
● It is made when the person has capacity.
● The person making it has not withdrawn it
● The advance decision is not overridden by a later an LPA that relates to the treatment specified in the advance decision.
● The person has acted in a way that is consistent with the advance decision.
An advance decision is applicable when:
● The person who made it does not have the capacity to consent to or refuse the treatment in question.
● It refers specifically to the treatment in question.
● The circumstances the refusal of treatment refers to are present.
An advance decision to refuse life-sustaining treatment is applicable when:
● It is in writing, including being written on the person’s behalf or recorded in their medical notes.
● It is signed by the person making it (or on their behalf at their direction if they are unable to sign) in the presence of a witness who has also signed it.
● It is clearly stated, either in the advance decision or in a separate statement (which must be signed and witnessed), that the advance decision is to apply to the specified treatment, even if life is at risk.