The advance decision in the limelight again: Re PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52SEF

Facts

An application to the Court of Protection was made by University Hospitals Birmingham NHS Foundation Trust, which was responsible for the hospital treating the respondent, Mrs W, a Jehovah’s witness aged 80, with Alzheimer’s dementia. She also suffered from cardiomyopathy and hypertension and had been taking aspirin. She was admitted on 12 September 2021 to the Trust’s hospital (surgical ward) as she was vomiting blood and in a perilous condition; due to internal bleeding from an ulcerated gastric tumour, she was severely anaemic and surgery was ruled out as she was at risk of sudden bleeding which, if not treated, could end her life. Administration of blood transfusion would significantly reduce the risk of her dying so that she could undergo further investigations and afterwards surgical or other treatment of her ulcerated tumour might offer her a further five to ten years of life.

She made an advance decision in 2001 which clearly included a decision not to be given blood or blood products even if her life was at risk. In 2020 she gave a Lasting Power of Attorney (LPA) to her four children appointing them to make decisions for her about her health and welfare. That LPA was registered with the Office of the Public Guardian. However, no specific instructions were given by her to her attorneys about treatment with blood transfusion or anything else; she also chose not to give her attorneys authority to give or refuse consent to life-sustaining treatment on her behalf.

During the assessment in hospital of her capacity to make decisions regarding her medical treatment, she at first stated her agreement to be given blood transfusion but half an hour later she withdrew that consent. The applicant Trust argued that this was obviously not consistent with the advance decision in 2001 remaining her fixed decision and, so, her statements and actions made her advance decision invalid according to s 25(2)(c) of the Mental Capacity Act 2005 (MCA 2005).

The court, therefore, had to determine the following issues:

Whether Mrs W had capacity to refuse or consent to having a blood transfusion;

Decision

Regarding capacity to make an advance decision: the judge first reviewed ss 1–3 of the MCA 2005 containing the key provisions to be followed by the court in determining capacity, namely: (a) a person should be presumed to have capacity until the contrary is established; (b) people who lack capacity such as those who, at the material time, cannot decide for themselves in relation to the matter because of some impairment of, or disturbance in the functioning of, their mind or brain; and (c) inability to make decisions (where the person is not able to understand the information relating to the decision, to retain that information, to use/weigh it as part of the decision-making process, or to communicate their decision in some way).

The judge found the oral evidence given to the court by Dr J, one of the doctors who had assessed Mrs W for her capacity to consent to, or refuse, treatment persuasive. Dr J made it clear that Mrs W was not able to make the decision due to her dementia – an impairment of, or a disturbance in the functioning of, the brain or mind. There was no other evidence presented to the court to suggest that Dr J’s evidence was not correct, and the judge was satisfied on a balance of probabilities that Mrs W lacked capacity to consent to or refuse blood transfusion.

Next, the judge noted that the advance decision made by Mrs W in 2001 clearly met the requirements later set out in the MCA 2005. An advance decision takes effect only after its maker has lost capacity to make that decision. However, it is revocable, as Munby J said (at 37) in HE v A Hospital NHS Trust [2003] EWHC 2017 (Fam). It can be withdrawn (s 25(2)(a), MCA 2005) or displaced by an LPA (s 25(2)(b), MCA 2005) but withdrawal can be made, and an LPA can be granted, only when the person in question has capacity. No such restriction applies to s 25(2)(c), MCA 2005 which allows for an advance decision to be rendered invalid if the person who made it does something (other than withdrawal or granting an LPA which displaces the advance decision) that is “clearly inconsistent” with the advance decision remaining their fixed decision. The question will only arise after they have lost their capacity but the court may consider things done before or after that time. So, s 25(2)(c) allows for a person who has lost capacity nevertheless to do something or to have done something that invalidates the advance decision. The judge also noted that s 25(2)(c) would fall to be considered only in the case of a person who had not withdrawn or revoked their advance decision, and who had not afterwards granted an LPA conferring authority to give or refuse consent to treatment to which the advance decision relates. Thus, s 25(2)(c) fell to be considered in this case.

On the evidence presented to the court, the judge was satisfied that Mrs W had done things that were inconsistent with her advance decision remaining her fixed decision. Those things included the following:

(a) She surely knew her children to be hostile to the denomination of Jehovah’s Witnesses and yet she granted to them authority to make decisions regarding all medical treatment (apart from life-sustaining treatment) if she should lose capacity to decide so for herself without telling them, or including in the LPA she gave to them, any requirement or preference not to receive blood transfusion or any blood products.

Lastly, regarding Mrs W’s best interests, the judge considered all the circumstances, information and available evidence: blood transfusion being a relatively risk-free procedure which would not involve any major invasion on her person; her exposure to a very significant risk of death without it (it was very urgently needed); the views of her clinicians and her family; following transfusion, her underlying condition could be treated, which might allow her to live for another five to seven years; the presumption that life ought to be prolonged if possible, etc. Consideration of these factors caused him to decide that blood transfusion would be in her best interests (and in accordance with her human rights under articles 2, 3, 8 and 9 of the European Convention on Human Rights).

Comment

This case raises some interesting aspects of an advance decision, one of which is its revocability (although there are others). The comment on it here will focus on: (a) some of the terms used to describe an advance decision, (b) some principles relating to it, (c) whether it is revocable or can be invalidated, (d) some arguments for and against it, and (e) its standing in relation to the Mental Health Act 1983, as amended.

(a) Terminology

The advance decision used to be known as “advance directive”. However, the MCA 2005 brought in the new terminology, “advance decision”. According to s 24 of the Act, which, actually, retained the wording of clause 23(1) of the Draft Mental Incapacity Bill 2003, an advance decision is:

“a decision by a person …, after he has reached 18 and when he has capacity to do so, that if (a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and (b) at any time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued.”

So, in short, it enables a competent person to leave instructions about the medical treatment he/she does not want to receive when he/she loses competence later.

In the United States it is also known as the “living will” (L Kutner, “Due Process of Euthanasia: The Living Will, a Proposal”, (1969) Indiana Law Journal, 44: 539–54), “durable power of attorney for health care”, “advance instruction”, etc. (see, e.g., JA Dunlap, “Mental Health Advance Directives: Having One’s Say”, (2000) Ky LJ, v98, i2, pp 327–86 and RS Dressler, “Ulysses and the Psychiatrists: A Legal and Policy Analysis of the Voluntary Commitment Contract”, (1982) Harv CR-CL L Rev, 16, 777).

In the literature an advance directive has also been described as a “Ulysses contract” (because of Ulysses’ instruction to his crew to tie him to the mast of the ship and leave him so tied as the ship approached the Sirens, despite any entreaties by him to be cut loose (Homer, The Odyssey, 258–9 (William Cullen Bryant, trans., 1899)). However, to describe it as a contract is a misnomer in the present writer’s view since a contract is an agreement between two or more parties whereas the advance decision/directive is unilateral.

Advanced directives (now advance decisions) were given legal recognition in England and Wales long before the MCA 2005. For example, in Re T (adult: refusal of medical treatment) [1992] 4 All ER 649, the Court of Appeal held, inter alia, that an adult patient was entitled to refuse consent to treatment if his/her capacity had not been reduced by illness, medication, misinformation, etc., if his/her will had not been overborne by another person’s undue influence, and if his/her decision had been directed to the relevant situation. In Re C (adult: refusal of medical treatment) [1994] 1 All ER 819, too, the court clearly accepted the validity of an anticipatory refusal. Also, in Airedale NHS Trust v Bland [1993] AC 789 Lord Goff said (at 866):

“the same principle [that respect must be given to the patient’s wishes] applies where the patient’s refusal to give consent has been expressed at an earlier date, before he became … incapable of communicating it …”

Three principles may be noted here. Firstly, for an advance decision to be effective, the maker/the patient must be over 18 years old and be competent, i.e. have capacity to make the decision (he must be able to: (a) understand the information that is relevant to the decision, (b) recall that information, (c) use and weigh it as part of his decision-making process, and (d) communicate his decision by some means: s 3(1), MCA 2005). This was clearly pointed out by the judge in the present case under review.

Secondly, the advance decision only comes into play when the maker/patient lacks capacity to consent to the treatment. Here there was a relevant valid advance decision (even though Mrs W did not mention it in the lasting power of attorney, etc.), but that decision was revoked or made invalid by her subsequent act that was inconsistent with the decision remaining her fixed decision.

Thirdly, as s 24, MCA 2005 clearly provides, an advance decision is only for refusal of treatment. Thus, it cannot be used to compel a particular treatment to be given to the patient. One support for this is the statement by the Court of Appeal in R (Burke v GMC) [2005] 3 FCR 169 [at 31] that “autonomy and the right of self-determination do not entitle the patient to insist on receiving a particular medical treatment”.

(c) Some arguments for and against the advance decision

Among their advantages or benefits are the following: (a) they provide a legal tool for patients to exercise their rights in both physical health care and psychiatric care, (b) they involve patients in their treatment, (c), they promote patients’ autonomy and self-determination (P Backlar, “Anticipatory Planning for Psychiatric Treatment is Not Quite the Same as Planning for End-Of-Life Care”, (1997) Community Ment Health J, v33, 262).

However, one concern about implementing an advance directive is that it involves two different persons: the competent person who executed it and the subsequently incompetent person subject to it. If so, then we have the past “self” dictating to the present “self” and that removes from the advance directive the moral and legal force of self-determination and autonomy, principles which underpin the concept (RS Dressler, “Advance Directives, Self-Determination and Personal Identity”, in C Hackler et al (eds), Advance Directives in Medicine, (1989), 158).

A further criticism of the directive is that no competent and reasonably healthy person can anticipate with accuracy how he/she might feel about any major medical intervention in a future period when he is incompetent and gravely ill (BA Rich, “Advance Directives – the Next Generation”, (1998) J Legal Med., 19, pp 63–97).

Despite these criticisms, in this writer’s opinion the promotion of patient autonomy and self-determination and the other benefits of the advance directive/decision do make it really very appealing.

(d) Revocability

Can it be revoked or made invalid by its maker? If so, when? The answers are contained in s 25(2)(c) of the MCA 2005. But, first, a comment or two:

As will be seen below, one argument in favour of the advance decision is that it promotes a patient’s autonomy and right to self-determination. It would, therefore, be contrary to the notion of free will if a competent patient can make an advance decision but is not allowed to revoke it when he is still competent (has capacity) or when he has regained capacity. The statement of Munby J in HE v A Hospital NHS Trust [2003] EWHC 2017 (Fam), referred to approvingly by Poole J in the present case at [42], is worth quoting here. According to Munby J:

“In my judgement it is fundamental that an advance directive is, of its very essence and nature, inherently revocable. An irrevocable advance directive is a contradiction in terms and is, in my judgment, a legal impossibility. An advance directive is, after all, nothing more or less than the embodiment of the patient’s autonomy and right of self-determination. A free man can no more sign away his life by executing an irrevocable advance directive refusing life-saving treatment than he can sign away his liberty by subjecting himself to slavery. Any condition in an advance directive purporting to make it irrevocable is contrary to public policy and void.”

Besides, Poole J also said in the present case [at 36] that ‘a person who has capacity is not at all bound by their advance decision. They have capacity to refuse or consent to treatment as they choose, irrespective of what advance decisions they have made.’

An advance decision can, therefore, be revoked. No wonder the advance decision made by Mrs W was rendered invalid by certain things she did that were plainly inconsistent with her advance decision remaining her fixed decision (s 25(2)(c), MCA 2005).

(e) The advance decision and the Mental Health Act 1983

Of course, a person’s advance decision ought to be respected if properly made. However, advance decisions are currently subject to the Mental Health Act 1983 (MHA 1983) where that Act is applicable. This is stated by clause 27(1) of the Draft Mental Incapacity Bill 2002. Indeed, the Joint Committee on the said Draft Bill stated that “the intention of Clause 27 is to ensure that once an incapacitated person has been detained in hospital under the MHA 1983, the powers available under Part IV would ‘trump’ the decision-making powers under the Bill” (Joint Committee on the Draft Mental Incapacity Bill, Session 2002–03, HL Paper 189-I; HC 1083-I (HMSO: 28 November 2003), ch. 12, para. 218). Moreover, according to the Mental Capacity Act 2005, Code of Practice (2007), para. 13.27, “if somebody can be given mental health treatment without their consent because they are liable to be detained under the MHA, they can also be given mental health treatment that goes against an advance decision to refuse treatment”. (See also para. 13.35 of the Code of Practice, 2007.)

Therefore, one can say that the MHA 1983, Part IV, may be used to override some compulsorily detained patient’s advance decisions regarding treatment for mental disorder (s 63, MHA 1983 which concerns treatment not requiring consent). Such patients include those detained under ss 2, 3 and 37 of the MHA 1983. (Section 2, MHA 1983 governs admission for assessment, s 3 admission for treatment, and s 37 admission under a hospital order without restrictions. The duration of s 2 is up to 28 days and that of ss 3 and 37 up to 6 months initially, renewable for another 6 months and then annually.)

Conclusion

The advance decision, as we can see from the foregoing, is an important and interesting feature of medical law regarding consent to treatment. It has been given various descriptions in the literature and has both parliamentary and judicial recognition. Some arguments for it and against it have also been presented. However, it is revocable and can be overridden by the MHA 1983, s 63, according to which certain compulsorily detained patients can, without their consent, be given treatment for their mental condition.