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Advance decisions and the MentalCapacity Act

It has long been recognized that ‘a mentally competent

patient has an absolute right to refuse to consent to medical

treatment for any reason, rational or irrational, or for no

reason at all, even where that decision may lead to his or 

her own death’ (Re MB (Medical Treatment) [1997] 2 FLR 426).

Thus, in the case of a patient with capacity, the patient has an

absolute right to determine whether to consent to, or refuse,

medical treatment, even life-sustaining treatment. Therefore, in

general, excluding emergency situations, treatment of an adultwith capacity without consent will constitute a trespass to the

person and be unlawful, exposing the health-care professional to

both criminal and civil liability.

In England and Wales the Mental Capacity Act 2005

(MCA) affords the same recognition to precedent autonomy

(that is where an individual exercises her autonomy in

advance of incapacity, when she will lack the ability to make

and communicate autonomous choices), giving statutory

recognition to advance decisions. While the MCA does not

seek to give binding force to advance directives in general,

it does recognize that an individual can make a valid and

binding advance refusal of treatment, including life-sustaining

treatment, which will take effect if she later lacks the capacity

to make a contemporaneous decision (section 26). Thus, if aperson with capacity makes a valid and applicable advance

refusal of treatment, that refusal will take effect once she

lacks capacity regardless of whether it could be considered

consistent with her best interests, or of whether her family

and/or the health-care professionals caring for her agree with

that anticipatory refusal. Nevertheless, despite accepting in

principle the validity of advance decisions, the MCA requires

a number of prerequisites to be met if an advance decision is

to bind health-care professionals.

Who can make a valid advance decision?Section 24(1) of the MCA restricts the ability to exercise

precedent autonomy to adults (aged 18 and over) with capacity.

The level of capacity required will depend upon the particular 

decision – the graver the consequences of the decision, the greater 

the degree of capacity that will be required. Capacity is defined in

section 2–3, where it states that the patient must be able to:Understand the information relevant to the decision

Retain that information

Use or weigh that information as part of the process of 

making the decision

Communicate her decision.

The MCA also incorporates a statutory presumption of 

capacity (section 1(2)), but in cases of doubt it will have to

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Samantha Halliday

be shown that the patient had the requisite capacity at the

time of formulating the advance decision.

Another significant limit on the exercise of precedent

autonomy is that the ability to make binding advance decisions

is restricted to adults. Arguably, this is simply a reflection of the

asymmetries between a minor’s ability to consent to/refuse

medical treatment, with only the former being recognized

and a refusal being subject to being overridden by those with

parental responsibility or the court (Re E (A Minor) (Wardship:

Medical Treatment) [1993] 1 F.L.R 386). Nevertheless, it remains

unfortunate that the MCA affords no recognition to the ability

of mature minors to set out how they would not wish to be

treated in the event of incapacity.

How can an advance decision be made?The MCA does not proscribe any format for a valid advance

decision unless it relates to the refusal of life-sustaining treatment,

in which case a signed, witnessed, written declaration is required,

specifying that the refusal is to operate even if life is at risk.

British Journal of Nursing, 2009, Vol 18, No 11 69

Samantha Halliday is Senior Lecturer in Law at Liverpool Law School,

University of Liverpool.

 Accepted for publication: May 2009 

Abstract

This article considers the requirements set out in the Mental Capacity

Act 2005 for valid advance decisions. The Act recognizes that an adult

with capacity may refuse treatment, including life-sustaining treatment,

in advance of losing capacity. If that advance decision is valid and

applicable, it will bind health-care professionals, taking effect as if the

patient had contemporaneously refused the treatment. However, in caseswhere the advance decision does not relate to treatment for a progressive

disease, it will be extremely difficult for the patient to meet the dual

specificity requirement – specifying the treatment to be refused and the

circumstances in which that refusal should operate. Moreover, while a

patient may explicitly revoke an advance decision while she retains the

capacity to do so, the continuing validity of an advance decision may

be called into question by the patient implicitly revoking her advance

refusal or by a change of circumstance. This article concludes that the

key to enabling patients to exercise precedent autonomy will be full and

frank discussion of the scope and intentions underlying advance decisions

between patients and their health-care professionals.

Key words: Advance decisions n Best interests n Capacity

n Mental Capacity Act 2005 n Patient autonomy

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 The validity and applicability of advance decisionsProvided that the patient’s advance decision is valid and

applicable to the treatment in question, that decision will have

‘effect as if he had made it, and had had capacity to make it,

at the time when the question arises whether the treatment

should be carried out or continued’ (section 26, MCA).

However, the validity of the patient’s advance decision does

not only depend upon whether she had the capacity to makethe decision and whether it corresponds with the treatment

and treatment scenario envisaged in the advanced decision

(the specificity requirements) – the continued validity of the

advance decision may also be called into question.

Revocation by a patient with capacityA patient may revoke her advance decision at any time,

provided that she has the capacity to do so (section 24(3),

MCA). The question of capacity is decision-specific, so that it

may well be the case that a patient lacks the capacity to make

an advance decision, but has the requisite capacity to revoke an

existing decision, particularly as the courts have stressed that in

cases of doubt the preference for life must be protected.

Invalidity due to the patient’s actions subsequentto making the advance decisionClearly if the patient withdraws an advance decision it

should be invalidated, but an advance decision can also

be invalidated by actions undertaken by the patient if it

is considered that the patient has done anything ‘clearly

inconsistent with the advance decision remaining his fixed

decision’ (section 25(2)(c), MCA). There is no requirement

set out in the MCA that the patient must have capacity at

the time such actions take place and thus, it would appear 

that even an incapacitated patient can invalidate an advance

decision by acting inconsistently with their previous refusal

of treatment. A good example from the case law of theimpact of inconsistent action on behalf of the patient can

be seen in the case of HE v A Hospital NHS Trust, AE [2003]

2 F.L.R. 408 where it was stressed that ‘the continuing

validity and applicability of the advance directive must be

clearly established by convincing and inherently reliable

evidence’. The case study (Box 1) is based upon this case

and sets out the relevant facts. AE’s father argued that

her advance directive was no longer a valid expression of 

her views because she had recently become engaged to

a Muslim, had said that she intended to revert to Islam

and had not attended Jehovah’s Witness meetings for four 

months having renounced that faith. Munby J accepted

all of these statements as evidence that she had acted

inconsistently with her advance directive, which he stressed

was based upon her faith as a Jehovah’s Witness and that it

was therefore no longer valid and need not be followed.

Moreover, if after making the advance decision, the patient

creates a Lasting Power of Attorney, giving the attorney

the authority to make decisions concerning the treatment

refused in the advance decision, the advance decision will

be invalidated. In such a case the attorney will be entitled to

refuse or consent to the specified treatment on the basis of 

the patient’s best interests; the patient’s advance refusal will

be invalid, s.25 (2).

This is a new requirement imposed by the Act – previously the

common law accepted that oral statements (W Healthcare NHS 

Trust v H  [2005] 1 WLR 834) or decisions communicated by

blinking (Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 )

could constitute a binding advance refusal of life-sustaining

treatment. This may continue to be the case, but the advance

decision must be written down, witnessed and signed, albeit by

another person on behalf of the patient. The vast majority of advance refusals will relate to a refusal of life-sustaining treatment,

so in practice advance refusals will generally be in written form,

which may well be highly desirable from an evidential point

of view, but which does impose a further restriction upon the

ability to exercise precedent autonomy. It also underlines the

difference between contemporaneous and anticipatory refusals

 – in the former the patient is not required to expressly recognize

that her life is at risk, or to sign a piece of paper documenting

her refusal and being witnessed by a third party.

What can an advance decision relate to?Advance decisions may only contain refusals of medical treatment.

This restriction reflects the same limitation imposed uponcontemporaneous decision-making – patients are not entitled

to mandate treatment that is not clinically indicated. However,

by refusing one or more potential treatments a patient may

be able to require that one particular treatment is used rather 

than another. Moreover, while advance decisions requesting a

particular treatment will not bind a health-care professional, they

will provide evidence of her past wishes and thus will be relevant

to any determination of her best interests (section 4, MCA).

 Just as is the case in the patient with capacity, an advance

decision cannot compel a health-care professional to perform

an unlawful act, nor can it refuse basic care, as opposed to

medical treatment. Therefore, artificial nutrition and hydration

(categorized as medical treatment since  Airedale NHS Trust 

v Bland  [1993] 1 All ER 821) may form the subject of anadvance decision, but refusal of spoon-feeding (a form of basic

care) could not. Similarly an advance decision cannot refuse

treatment for a mental disorder where the patient is, or is liable

to be, compulsorily detained under the Mental Health Act.

The advance refusal must relate to a specific treatment and

set out specific circumstances in which the refusal should

operate. This dual specificity requirement is unlikely to be

problematic in cases where the patient is suffering from a

progressive disease, where the likely progression of the disease

and treatment options can be determined quite precisely,

however, that will not be the case in, for example, someone

left in a persistent vegetative state as a result of an accident.

While section 24(2) of the MCA does specify that both

the refused treatment and operative circumstances may be

expressed in non-technical language, no real guidance is given

as to how specific the refusal must be – arguably the actual

treatment, e.g. ‘artificial nutrition and hydration’ as apposed

to simply ‘life-sustaining treatment’, must be named, or ‘all

treatment’ must be refused. Moreover, the patient also has to

foresee the circumstances in which her refusal should operate

  – the degree of specificity required by that anticipation

will be the key to the effectiveness of this provision. Thus

these specificity requirements have a very great potential to

undermine the validity of anticipatory refusals.

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Invalidity due to a change of circumstanceIn addition to invalidity resulting from both explicit and implicit

revocation, advance directives may be invalidated by changing

circumstances. Thus, if circumstances that the patient could not

anticipate at the time of making the advance decision exist at the

time when the refusal should come into operation, the refusal

will not be applicable. The MCA does not require patients to

renew their advance decisions, rather they will continue untilexplicitly or implicitly revoked, however, patients should be

encouraged to renew their advance decisions regularly to ensure

that they are likely to have considered new developments that

may have occurred. While not explicitly stated in either the

MCA Code of Practice (Office of Public Sector Information,

2007) or the Act, it is suggested where the new circumstances

relate to new medical circumstances, they must be such that they

will provide therapeutic benefit to the patient.

However, change of circumstances are not limited to medical

developments, a factor that is underscored by the Code of 

Practice, which stresses the need to regularly review and update

advance decisions to ensure that they are ‘more likely to be

valid and applicable to current circumstances’ (para. 9.29.)Importantly, both the Code of Practice (para. 9.16) and the

BMA (2007) guidance advises that women should consider 

whether or not their advance decision should apply if they

were to become pregnant, suggesting that pregnancy may be

regarded as a significant change of circumstance.

 The legal effect of advance decisionsThe MCA stresses that a valid, applicable advance refusal will

bind health-care professionals (section 26(1)) and that they will

not be liable for not treating a patient if they reasonably believe

that an advance decision exists which is valid and applicable to

the treatment (section 26(3). If a health-care professional treats a

patient despite being aware of the patient’s valid and applicable

advance refusal, she may face civil and criminal liability.However, if a health-care professional is not satisfied that

a valid and applicable advance decision exists, she will not

incur liability for treating the patient, and the MCA expressly

recognizes that a health-care professional may provide

life-sustaining treatment or take any action she believes

to be necessary to prevent a serious deterioration in the

patient while awaiting a court decision about the validity

and applicability of an advance decision (section 26(2)(5)

MCA). In the case of doubt as to the existence, validity or 

applicability of an advance decision an application should be

made to the Court of Protection for a declaration, which will

establish whether the purported advance decision is valid and

applicable or not. If an advance decision is found not to be

valid and applicable, for example, because the circumstances

envisaged in the advance decision have not arisen, the

patient must be treated in accordance with her best interests.

However, even in such a case, the advance decision still has

value as it represents a useful indication of the patient’s wishes

and must be considered in the determination of the patient’s

best interests under section 4 of the MCA.

ConclusionThe MCA can be regarded as a step towards protecting

precedent autonomy. It provides that a patient with capacity

can make a legally binding refusal of a specific treatment in

specific circumstances in advance of incapacity. However, the

problem with advance decisions remains that alluded to by

Lord Donaldson in Re T (Adult: Refusal of Treatment) [1993]

Fam. 95, namely that the validity and authority of anticipatory

decision-making calls into question the interplay of two

potentially opposing rights – the right to life and the right to

autonomy. Lord Donaldson stressed that in cases of doubt as towhether the patient has made an effective refusal of consent,

the respect for life must take precedence. Similarly, the GMC’s

draft guidance (GMC, 2009) provides that in cases of doubt and

insufficient time for further investigation, treatment should be

provided if it has a realistic chance of prolonging the patient’s

life. This preference for life pervades the MCA, so that in cases

where there is any doubt at all that the patient might not

intend her advance decision to apply to the situation in hand,

the advance decision is liable to be found to be inapplicable.

The MCA makes it clear that a patient can exercise

precedent autonomy, but the limits upon that autonomy,

particularly the need for a specificity of treatments and

treatment scenarios, have the potential to undermine thatability. This is a potential that can only be reduced by

discussions between the patient and her health-care

professionals about the scope and intention underlying any

advance decision. BJN

BMA (2007) BMA Advance Decisions and Proxy Decision-Making in Medical Treatment and Research – Guidance from the BMA’s Medical Ethics Department .BMA, London

GMC (2009) GMC Draft Guidance. End of Life Treatment and Care: Good Practice in Decision-Making. GMC, London

Office of Public Sector Information (2007) Mental Capacity Act 2005 Code of Practice, 2007. The Stationary Office, London. Available at: http://tinyurl.com/qp3b5e (accessed 28/5/09)

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British Journal of Nursing, 2009, Vol 18, No 11 69

Box 1. Case study

Delia (aged 24) was raised as a Muslim until her parents divorced when she was five years old. Thereafter, she lived with her mother, a Jehovah’s Witness, and adopted

her mother’s faith. Accepting the teaching of her faith, three years ago she completed

an advance directive stating ‘As a Jehovah’s Witness I do not wish to receive blood

products under any circumstance. I realise that this may result in my death, but I would

prefer to die than to receive blood products and thus endanger my prospect of eternal

life.’ The advance directive was witnessed by two members of the congregation. She

has now been admitted to hospital, is seriously ill and in a coma. Her doctors believe

that she requires a blood transfusion and that without one she will certainly die. Her

father has told the hospital that she is engaged to a Muslim man and that she is no

longer a practising Jehovah’s Witness, not having attended meetings for six months.

Discussion

 This case study is based on HE v A Hospital NHS Trust, AE [2003]. Although Delia

has complied with the formal requirements for a valid advance decision, in order for

the advance decision to bind health-care professionals it must be considered to be

 valid and applicable to the treatment scenario that arises. There is no doubt that Deliahas complied with the specificity requirements – she has refused a specific treatment

in specific circumstances, even if this will result in her death, but her father has raised

the question of whether her advance directive still represents her wishes. As Delia’s

advance directive would be regarded as being based upon her faith, a faith which may

have lapsed, it would be incumbent upon her to prove that she intended her advance

directive to continue to apply. As Delia is in a coma, she lacks the ability to prove

that it should apply and thus health-care professionals will have to consider whether it

continues to represent a valid expression of her wishes. A declaration may be sought

from the Court of Protection to determine whether it remains valid and applicable. If it

is decided that it is not valid and applicable, health-care professionals can treat her in

accordance with her best interests.