This page examines the law and best practice when making an advance decision. The legal term is an advance decision to refuse treatment. Before the Mental Capacity Act 2005 came into force, advance decisions were sometimes referred to as advance directives or living wills.
What is an advance decision?
Advance decisions have long been recognised at common law, but were put on a statutory footing by Section 24 – 26 of the Mental Capacity Act 2005 (MCA 2005) with effect from 1 October 2007. Before the MCA 2005 rules came into force, advance decisions were sometimes referred to as advance directives or living wills.
An advance decision is now defined as a decision refusing the giving or continuing of specific medical treatment if, at the time in the future at which that treatment is to be given or continued, the decision-maker has lost capacity to consent to it (section 24(1), MCA 2005).
The decision-maker must satisfy both of the following conditions:
- He must be 18 or over. Minors do not have an absolute right to refuse medical treatment and although their wishes should be taken into account when considering whether treatment would be in their best interests, they can be overruled by the court or a person with parental responsibility.
- He must have mental capacity to make the decision.
The decision-maker may choose to specify particular circumstances in which the specified treatment is to be refused, but this is not a requirement. Both the specified treatment and any specified circumstances can be expressed in layman's terms, although their meaning must be clear to those providing the decision-maker's health care (section 24(2), MCA 2005).
As a matter of general law, an advance decision is unlikely to be effective if made as a result of fraud, duress or undue influence.
Decisions that cannot be made by advance decision
It is important to be aware of the limitations of advance decisions.
No compulsion to treat
A decision-maker cannot use an advance decision to require a healthcare professional to provide him with a particular medical treatment, just as a person with capacity at the time of treatment cannot compel a healthcare professional to provide a particular medical treatment (see paragraph 9.5, Code of Practice).
Advance decisions are more accurately referred to as advance decisions to refuse treatment (ADRTs) on the basis that their legal effect is limited to a refusal of consent to treatment. However, there is no reason why an advance decision cannot include positive expressions of preference as to the provision of particular treatments. A statement that the decision-maker is in favour of a particular treatment, although not legally binding, may assist a healthcare professional in deciding what treatment is in the decision-maker's "best interests" at a time when the decision-maker lacks capacity to decide for himself.
A decision-maker cannot use an advance decision to refuse actions that are needed to keep him comfortable (sometimes referred to as basic or essential care). These actions include the provision of warmth and shelter, hygiene measures to maintain body cleanliness and the offer of food and water by mouth. These acts are not "treatments" and so healthcare professionals may carry them out in the best interests of a person who lacks capacity to consent.
However, a decision-maker can make a binding advance decision to refuse life-sustaining treatment, including artificial nutrition and hydration (ANH) (feeding by tubes), which is recognised as a form of medical treatment (paragraph 9.26, Code of Practice). Under the MCA 2005, there are additional formal requirements in respect of decisions to refuse life-sustaining treatment.
A decision-maker cannot use an advance decision to request or authorise illegal acts, including assisted suicide.
Treatment for mental disorder
Where a person is detained under the Mental Health Act 1983(MHA 1983), an advance decision refusing treatment for mental disorder can be overruled if treatment could lawfully be given compulsorily under Part V of MHA 1983. An advance decision to refuse treatment for conditions other than mental disorder would not be overruled in these circumstances.
What is the effect of an advance decision?
Advance decisions made on or after 1 October 2007
Where an advance decision made on or after 1 October 2007 meets the statutory requirements of MCA 2005:
- It is as effective as a refusal of treatment by a person who has capacity (section 26(1), MCA 2005). A healthcare professional therefore risks both criminal and civil liability if he carries out or continues the specified treatment (section 26(2), MCA 2005 and paragraphs 9.2 and 9.57, Code of Practice)
- It removes from the healthcare professional dealing with the decision-maker:
- the need to consider whether or not the specified treatment is in the decision-maker's best interests; and
- liability for the consequences of withholding or withdrawing the specified treatment (section 26(3), MCA 2005).
- It overrules:
- a decision made by an attorney acting on behalf of the decision-maker under a health and welfare Lasting Power of Attorney (LPA) created before the advance decision ( section 11 (7)(b) and 252(b) and (7), MCA 2005);
- a decision of a court-appointed deputy ( www.practicallaw.com/2-382-6115) , no matter when the deputy was appointed (section 20 (6), MCA 2005); and
- the provisions of section 5 of MCA 2005 that allow healthcare professionals to give treatment to a person where they reasonably believe that he lacks capacity to consent and that the treatment will be in his best interests (section 5(4)).
- It cannot be overruled by the Court of Protection
An advance decision that does not comply with the statutory requirements will not have the effects described above, but will still be of importance when making a decision in the best interests of the incapacitated decision-maker. The Code of Practice states that healthcare professionals must consider a non-binding advance decision as part of their assessment of the decision-maker's best interests if they have reasonable grounds to think that it is a true expression of his wishes (paragraph 9.45, Code of Practice).
An advance decision made on or after 1 October 2007 must meet the following statutory requirements in order to have the effects described above:
It must be valid, which means that the decision-maker must not have:
- withdrawn the advance decision at a time when he had capacity to do so
- made a health and welfare LPA after the advance decision was made which gives the attorney(s) authority to give or refuse consent to the treatment specified in the advance decision (although, for an unusual case in which the Court of Protection declared valid an advance decision that would otherwise have been invalidated by a later health and welfare LPA,
- done anything else that is "clearly inconsistent" with the advance decision, even though the advance decision has not been expressly withdrawn
It is thought that a statement by a decision-maker in his advance decision to the effect that any future behaviour of his that appears inconsistent with his advance decision should be ignored (sometimes referred to as a Ulysses pact) would not be binding in the light of section 25(2) of MCA 2005
It must be applicable to the treatment, which means that:
- the decision-maker lacks capacity to give or refuse consent to the proposed treatment at the time that it is being offered;
- the advance decision specifies that the proposed treatment is one that the decision-maker refuses his consent to;
- if any circumstances are specified in the advance decision, those circumstances are present;
- there are no reasonable grounds for believing that circumstances now exist that the decision-maker did not anticipate at the time he made his advance decision and which would have affected his decision had he anticipated them (examples of such circumstances might include the existence of new or more successful medical treatments, the pregnancy of a female decision-maker or that, contrary to the decision-maker's understanding when making his decision, the specified treatment turns out to be life-sustaining in his situation); and
- in the case of life-sustaining treatment, certain additional requirements have been met).
(Section 25(3)-(5), MCA 2005.)
Additional statutory requirements for applicability of decisions to refuse life-sustaining treatment
An advance decision will not be applicable to life-sustaining treatment unless it satisfies the following additional requirements:
- It has been made in writing. If the decision-maker is unable to write, someone else should write his decision down for him.
- It has been signed by the decision-maker. If the decision-maker is unable to sign, he can direct someone to sign on his behalf and in his presence.
- It has been signed by the decision-maker in the presence of a witness and the witness has then signed the document in the presence of the decision-maker. If the decision-maker is unable to sign, the witness can witness him directing someone else to sign on his behalf. The witness must then sign to indicate that they have witnessed the nominated person signing the document in front of the decision-maker.
- It includes a clear and specific written statement by the decision-maker that the decision is to apply to the specified treatment even if the decision-maker's life is at risk (verification statement).
- If the verification statement is made at a different time or in a separate document to the advance decision, the decision-maker (or the person the decision-maker has directed to sign on his behalf) must sign the verification statement in the presence of a witness, who must then sign it in the presence of the decision-maker.
(section 25 (5) and (6) MCA 2005; see also paragraph 9.24, Code of Practice.)
"Life-sustaining treatment" is defined as treatment which, in the view of a person providing health care to the decision-maker, is necessary to sustain life (section (4) 10, MCA 2005). Whether a particular treatment is life-sustaining will therefore depend on both the type of treatment and the circumstances in which it is being given. For example, in some situations antibiotics may be life-sustaining, but they may also be used to treat conditions that do not threaten life. (Paragraph 9.25, Code of Practice.)
Advance decisions made before 1 October 2007
The effect of an advance decision made before the relevant provisions of MCA 2005 came into force on 1 October 2007 is likely to be determined by reference to the principles set out in MCA 2005 and the Code of Practice, as well as the common law, since MCA 2005 largely reflects the pre-1 October 2007 common law position.
Transitional rules for pre-1 October 2007 advance decisions to refuse life-sustaining treatment
Transitional rules provide that, where certain conditions are met, an advance decision to refuse life-sustaining treatment made before 1 October 2007 will be:
- Treated as both valid and applicable to a treatment.
- Exempt from the MCA 2005 requirements set out in the final four bullet points under Additional statutory requirements for applicability of decisions to refuse life sustaining-trteatment (disapplied requirements).
(Article 5, Mental Capacity Act (Transitional and Consequential Provisions) Order 2007 (SI 2007/1898).)
The following conditions must be met:
- A healthcare professional dealing with the decision-maker reasonably believes that the decision-maker:
- made the advance decision before 1 October 2007; and
- has lacked capacity to comply with the disapplied requirements since 1 October 2007.
- The advance decision is in writing.
- The decision-maker has not withdrawn the advance decision at a time when he had capacity to do so, or done anything else that is "clearly inconsistent" with the advance decision.
- The decision-maker lacks capacity to give or refuse consent to the proposed treatment at the time it is offered.
- The advance decision specifies that the proposed treatment is one that the decision-maker refuses his consent to.
- Any circumstances specified in the advance decision are present.
- There are no reasonable grounds for believing that circumstances now exist that the decision-maker did not anticipate at the time he made his advance decision and which would have affected his decision had he anticipated them.
Points to consider before making an advance decision
What is the benefit of making an advance decision?
The benefit of making an advance decision is that the decision-maker's wishes in relation to their future medical treatment are more likely to be followed. That is particularly the case where those wishes include the refusal of one or more forms of life-sustaining treatment.
It is apparent that unless an advance decision complying with the requirements of MCA 2005 has been made, the courts are unlikely to authorise the withdrawal of life-sustaining treatment from an individual who is in anything other than a persistent vegetative state (PVS).
It can be difficult to draft a comprehensive advance decision covering all possible treatments that may be available and all relevant circumstances that may arise in the future. However, even if an advance decision is not applicable to a particular treatment or in a particular set of circumstances, it will still be of value as an expression of the views of the decision-maker who has lost capacity. In this context, the advance decision could usefully include or be supplemented by a written statement of the values and beliefs that informed the decision-maker's approach, so that if new circumstances arise, the responsible healthcare professionals are better able to determine what treatments the decision-maker would have chosen had he been capable.
Information to include
The MCA 2005 does not prescribe any formalities for the creation of an advance decision that does not contain a refusal of life-sustaining treatment. However, the Code of Practice contains the following checklist of information that should be included when an advance decision is made in writing:
- Full details of the decision-maker, including his:
- date of birth;
- home address; and
- any distinguishing physical features (in case healthcare professionals need to identify him in an unconscious state).
- The name and address of the decision-maker's GP and an indication of whether the GP holds a copy of the advance decision.
- A statement that the advance decision should be used if the decision-maker ever lacks capacity to make treatment decisions.
- A clear statement of the decision, the treatment to be refused and the circumstances in which the decision is to apply.
- The date on which the advance decision was written (or last reviewed.
- The decision-maker's signature (or the signature of a person that the decision-maker has directed to sign on his behalf and in his presence).
- The signature of the person witnessing the decision-maker's signature (or witnessing the decision-maker's direction that another person sign on his behalf).
(Paragraph 9.19, Code of Practice.)
If the decision deals with life-sustaining treatment, the additional statutory requirements must be borne in mind, including the need for a verification statement, which may be incorporated into the advance decision.
Points to consider after making an advance decision
Informing key people about an advance decision
It is important that healthcare professionals and, if relevant, health and welfare attorneys under an LPA, know about an individual's advance decisions. Family members should also be informed so that they can alert healthcare professionals to the existence of an advance decision.
Written records of advance decisions can be kept with the decision-maker's medical records by providing a copy to his GP. Some decision-makers also choose to carry cards (similar to organ donor cards) or to wear a bracelet indicating that they have made an advance decision.
Reviewing an advance decision
There is no requirement for a decision-maker to review their advance decision and, in the absence of an express provision in the decision itself, it is not time limited. However, the Code of Practice recommends that anyone who has made an advance decision should review it regularly and update it as necessary (paragraph 9.29, Code of Practice). If a decision is not updated, doubts may arise about whether it is valid and applicable. Changes in the decision-maker's circumstances or advances in medical treatment may mean that their advance decision needs to be revised to ensure that it continues to address all the relevant issues.
Amending or withdrawing an advance decision
An advance decision can be withdrawn or amended at any time, provided the decision-maker still has the necessary capacity.
The decision-maker should notify anyone who had been aware of his original advance decision of its subsequent withdrawal or amendment. In the case of a written advance decision that has been withdrawn, it would be sensible for the decision-maker to destroy the original in order to avoid confusion.
Role of the Court of Protection
The Court of Protection can rule on the existence, validity and applicability to treatment of an advance decision, but cannot overturn a valid and applicable advance decision (section 26 (4), MCA 2005; see also paragraph 9.67, Code of Practice).
If a decision of the court is required, pending that decision, a healthcare professional is not prevented from providing life-sustaining treatment or doing any act that he reasonably believes to be necessary to prevent a serious deterioration in the decision-maker's condition (section 26(5), MCA 2005).
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