Alex RKThe (surprisingly) small body of case-law relating to advance decisions to refuse treatments has been added to by a judgment delivered by Poole J in difficult and urgent circumstances, but which grappled head on with the complexities to which they can give rise. In Re PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52, Poole J was sitting as the Out of Hours Business Judge in the Court of Protection, determining an application made in the evening of 17 September 2021, and conducted by telephone between 11:45 pm that evening and 3:25 am the next morning. The application concerned Mrs W, an 80 year old in a “perilous” condition in hospital. She had severe anaemia following internal bleeding due to an ulcerated gastric tumour, the medical evidence being that in her current state and whilst the tumour remained, she was at risk at any time of sudden bleeding which if untreated would almost certainly end her life. With blood transfusion that immediate risk would be significantly reduced so that she would be able to undergo investigations and then surgical or possibly other treatment for her tumour and, given her general condition, she would be likely to survive the treatment and might live for another five to ten years. Mrs W, had Alzheimer’s dementia. Assessment by a Consultant Geriatrician at the hospital had concluded that she lacked capacity to make decisions about her treatment. She was also a Jehovah’s Witness, and it emerged on 17 September 2021 that she had made an advance decision in 2001. This clearly included a decision to refuse blood or blood products even if her life is in danger. All parties accepted that the advance decision was properly made and was applicable to the decision whether to refuse or consent to blood transfusion.
As Poole J identified (at paragraph 3)
The question for the court, if Mrs W lacks capacity to make a decision whether to consent to or refuse blood transfusion, is whether the advance decision is valid within the meaning of the MCA 2005. If it is, then her decision must be respected even though she may well die as a consequence. If it is not valid, and she lacks capacity to make the decision, then the court is required to assess what decision should be made on her behalf, in her best interests.
The advance decision included the statement that it “will remain in force unless and until specifically revoked in writing by me.” It was witnessed by two witnesses. It was three pages long and includes the following (capitalisation as in the original document):
I am one of Jehovah’s Witnesses. On the basis of my firmly held religious convictions … and on the basis of my desire to avoid the numerous hazards and complications of blood transfusions, I absolutely REFUSE allogeneic blood (another person’s blood): the primary blood components red cells, white cells, platelets and/or plasma; and stored (predonated) autologous blood (my own stored blood) under any and all circumstances, no matter what the consequences.
MY DECISION to refuse blood and choose non-blood management MUST BE RESPECTED EVEN IF MY LIFE OR HEALTH IS THREATENED by my refusal. Any attempt to administer blood contrary to my instructions will be a violation of my rights of bodily self-determination and personal autonomy, and accordingly will constitute an actional trespass to my person.
As Poole J noted:
24. There are different elements to the advance decision but the refusal of allogeneic blood is very clearly stated to apply “under any and all circumstances”. That advance decision is applicable to the administration of allogeneic blood or blood products as life-sustaining treatment but it is not restricted to life-sustaining treatment.
Importantly, Poole J identified that:
25. Although it was made before the MCA 2005 came into force, the advance decision complies with the requirements for making an advance decision to refuse life-sustaining treatment (see s.25 of the MCA 2005). It is in writing, signed in the presence of witnesses, it includes a clear, specific written statement that it is to apply to the specific treatment – the administration of blood – even if life is at risk. There is no evidence that Mrs W took advice from a healthcare professional at the time that she made the advance decision but that was not and is not a requirement for the advance decision to be effective.
Mrs W had not withdrawn the advance decision but neither had she renewed or updated it since 2001. A further, important, factual matters is that, in August 2020 she made a health and welfare power of attorney in favour of her four children, which was registered with the OPG on 27 November 2020. She did not include any preferences or instructions. Her children’s evidence was she told them that she would like to be resuscitated if the need arose but did not tell them of any other preferences or instructions. She did not tell them that she had made an advance decision. The LPA also included a section headed “Life-sustaining treatment;” Mrs W opted not to give her attorneys authority to give or refuse consent to life-sustaining treatment on her behalf.
Two of her daughters, gave evidence to the court on their behalf and those of their siblings, recorded as follows (paragraph 30):
Mrs W is widowed and there are no other significant family members so far as I am aware. There is no question that the children love their mother dearly but no disguising the hostility they feel towards the Jehovah’s Witnesses denomination. They feel that their mother was pressurised into making her advance decision and was indoctrinated. Their father, Mrs W’s late husband, was a committed Jehovah’s Witness, and Mrs W went along with him because she is a “person who likes to please” and wanted to be a “good wife”. They felt that Mrs W was now being treated as “disposable” and that the idea that she should not be given a blood transfusion was akin to euthanasia. They were convinced that she wants to live and would choose to have a blood transfusion if she were able to give a considered and clear view.
Poole J also noted their evidence to the effect that when earlier in 2021 she had been very ill in hospital, “[a] ‘DNR’ order had been mistakenly included in her medical notes and she insisted on it being removed. The children told me, through Ms W, that Mrs W had never mentioned the advance decision to them and they had been completely unaware of its existence.”
Poole J identified that it would have been possible for him to avoid making determinations about the key issues in the application, to allow further evidence to be gathered. Despite the shortness of the notice, no party sought an adjournment, and, he continued:
44. […] in any event I was presented with compelling evidence that Mrs W required a blood transition urgently and was at risk of dying due to complications which could occur “at any time” if she were not given a blood transfusion. I was told that clinicians were “standing by” ready to give blood if so authorised. It would, in my judgement, have been an abrogation of responsibility not to make a decision on the evidence before me. With the considerable assistance of counsel, the court did its best to extract and scrutinise the evidence available in order to make the best informed decision that could be made in the circumstances.
On the evidence, Poole J was satisfied that it was clear that Mrs W lacked capacity to decide whether to accept or refuse a transfusion. The focus was therefore upon what to do in face of the advance decision and, in particular, whether “in accordance with s.25(2)(c) of the MCA 2005, the advance decision is no longer valid because Mrs W has ‘done anything else clearly inconsistent with the advance decision remaining her fixed decision” (paragraph 47). Poole J’s observations about the law in this area merit reproduction in full, given their clarity and lucidity in relation to a point that has not been the subject of detailed consideration since the MCA 2005 came into force:
50. Under s.26 of the MCA 2005, an advance decision only has effect when the person who made it has subsequently lost capacity to make the material decision. The advance decision can be withdrawn (s.25(2)(a)) or displaced by an LPA (s.25(2)(b)) but withdrawal can be effected and an LPA can be granted only when the person concerned has capacity to do so. No such restriction applies to s.25(2)(c). I interpret s.25(2)(c) as allowing for the advance decision to be rendered not valid should the person who made the advance decision do “anything else” (other than withdrawal or granting an LPA which displaces the advance decision) which is “clearly inconsistent” with the advance decision remaining their fixed decision, before or after they have lost capacity to make the relevant treatment in question. The question will only arise after they have lost capacity but the court may consider things done before or after that time. Munby J refers to a person being locked into their advance decision once they have lost both capacity to decide whether or not to accept medical treatment and any ability to express their wishes and feelings. Similarly, s.25(2)(c) allows for a person who has lost capacity nevertheless to do something or to have done something which renders the advance decision not valid.
51. I also note that s.25(2)(c) will only fall to be considered in the case of a person who has not withdrawn (revoked) their advance decision, and who has not subsequently granted an LPA conferring authority to give or refuse consent to treatment to which the advance decision relates. Something other that express withdrawal of the advance decision may suffice to render it not valid. It follows that, as Munby J emphasised in HE v A Hospital NHS Trust(above), the term within Mrs W’s advance decision that “It will remain in force unless and until specifically revoked in writing by me” is unenforceable.
52. Three words within s. 25(2)(c) require particular comment:
a. “done”: I read this to include words as well as actions. I am strongly reinforced in this view by what Munby said at paragraph [43] of his judgment in [the pre-MCA case of] HE v A Hospital NHS Trust(above):
“No doubt there is a practical – what lawyers would call an evidential – burden on those who assert that an undisputed advance directive is for some reason no longer operative, a burden requiring them to point to something indicating that this is or may be so. It may be words said to have been written or spoken by the patient. It may be the patient’s actions – for sometimes actions speak louder than words. It may be some change in circumstances. Thus it may be alleged that the patient no longer professes the faith which underlay the advance directive.”
The statutory provision does not refer to words and actions, only what P has “done”, but it would be an odd restriction on the interpretation of “done” to exclude written or spoken words when the provision is addressed to previous written or spoken words in the form of an advance decision (an advance decision about treatment which is not life-sustaining treatment may be made verbally).
b. “clearly”: the court should not strain to find something done which is inconsistent with the advance decision remaining the individual’s fixed decision. Something done or said which could arguably be “inconsistent”, or which the court could only find might be inconsistent will not suffice.
c. “fixed”: s.25(2)(c) does not merely require something done which is inconsistent with the advance decision, but rather something done which is inconsistent with it remaining the person’s fixed decision. Fluctuating adherence to the advance decision may well be inconsistent with it remaining their fixed decision. As with the other elements of the test, whether it is inconsistent will depend on the facts of each case.
The Trust asserted that the advance decision was not now valid because s.25(2)(c) was made out: this meant, Poole J considered, that “the burden of proof [was] on the Trust which must establish that on the balance of probabilities Mrs W has done something inconsistent with the advance decision remaining her fixed decision” (paragraph 54).
Poole J identified that:
57. The determination of whether Mrs W has done something clearly inconsistent with the advance decision remaining her fixed decision has profound consequences and requires the most anxious consideration. I recognise that the evidence before me does not all go one way. However, weighing all the matters discussed, I am satisfied, on the balance of probabilities, that Mrs W has done things clearly inconsistent with the advance decision remaining her fixed decision. She granted to her children, whom she surely knew were hostile the Jehovah’s Witnesses denomination, authority to make decisions about all medical treatment, other than life-sustaining treatment, on her behalf should she lose capacity to make such decisions for herself, without mentioning to them or including in the written LPA any preference or requirement not to receive blood transfusion or blood products. The advance decision was widely drawn and did not restrict the refusal of consent to blood transfusion or blood products by way of life-sustaining treatment. Her actions at the time of granting the LPA were in my judgment clearly inconsistent with the advance decision remaining her fixed decision. For the reasons stated earlier, I must presume that she had capacity at that time.
58. Likewise, Ms W’s actions earlier this year on requesting the removal of the DNR notice, without qualification and without telling her children or, to their knowledge, her clinicians, about the advance decision or that she would refuse a blood transfusion or blood products is, in my judgment inconsistent with the advance decision remaining her fixed decision.
59. Mrs W’s stated wish at 1500 hours on 17 September 2021 to have transfusion of blood “free from diseases” if she might die without it, was an expression of wishes and feelings which were inconsistent with the advance decision remaining her fixed decision. Whilst she later expressed wishes and feelings which were consistent with her advance decision, the test under s.25(2)(c) requires the court to consider whether Mrs W has done anything clearly inconsistent with the advanced decision remaining her “fixed” decision. I find that when she expressed wishes and feelings inconsistent with the advance decision she was expressing genuine wishes and feelings with more clarity of thought than when she spoke with Dr J half an hour later. It would be open to the court to dismiss both, contradictory expressions of her wishes and feelings as having no weight because of her cognitive impairment. But I am satisfied that some weight should be given to what she said to Dr J, in particular in the first conversation when, in his considered view, she was not resorting to formulaic expressions. Even if equal weight were given to both, contradictory assertions of her wishes and feelings, it could hardly be said that Mrs W was acting consistently with the advanced decision being her “fixed” decision.
Poole J noted that:
61. No submission was made to me that s.25(2)(b) applied because the lasting power of attorney from 2020 conferred authority on the donees to give or refuse consent to the treatment to which the advance decision relates. Although the LPA expressly did not apply to decisions about life-sustaining treatment, and the treatment under consideration is life-sustaining treatment, the LPA surely conferred authority on the donees to give or refuse consent to the administration of allogeneic blood and blood products by way of non life-sustaining treatment. On the one hand, the advance decision relates to such treatment whether life-sustaining or otherwise but, on the other, the treatment which is now being considered is life-sustaining treatment for which authority was not granted. It might have been argued, but was not, that s.25(2)(b) is satisfied. Since this was not argued at the hearing and did not form the basis of the decision that I communicated at the hearing, I have not asked for further submissions on this issue and I make no determination as to whether s.25(2)(b) applies in this case.
It therefore fell to Poole J to determine what was in Mrs W’s best interests. Having reviewed the evidence and circumstances, he held thus at paragraph 63:
In all the circumstances I am satisfied that it is in Mrs W’s best interests to have blood transfusion to restore and maintain her haemoglobin at 10 g/dl. I so conclude doing my best to put myself in her shoes and determine her interests taking into account her welfare from the widest perspective. I am satisfied that the decision is in Mrs W’s best interests is lawful and in accordance with her human rights under articles 2, 3, 8 and 9 of the ECHR.
Comment
Views about this decision may vary depending upon one’s adherence to the concept of precedent autonomy. Some may feel useful in working out what they feel about this this article which looks at the situation where (as here) it might be said that a person’s past and present wishes collide. Some may also want to mine the judgment for evidence of a discriminatory failure to recognise the beliefs of a Jehovah’s Witness. For my part, and given the evidence of the daughters recorded by Poole J, I would suggest that this would be unfair. Rather, it seems to me that Poole J (under clearly sub-optimal circumstances) was striving to identify whether the Trust had upheld their challenge to the ADRT, not to find a way to unpick it on grounds of disagreeing with its religiously-motivated contents. However, this decision serves as a useful opportunity to flag this guidance for anaesthetists (but equally relevant to other medical professionals) about caring for Jehovah’s Witnesses who refuse blood.
Poole J’s analysis of s.25(2)(c) is crisp and clear, and is entirely consistent with (but much more fully reasoned than) the only previous post-MCA 2005 judicial consideration of what this provision might mean – Re QQ, where Keehan J, likewise, considered that the concept of “doing” something inconsistent with the ADRT remaining the person’s fixed decision could encompass the “doing” of something on the other side of incapacity.
The analysis and observations of Poole J about the concept of “doing” something inconsistent are not a licence simply to ignore an ADRT on this basis – he made clear both the burden of proof and the threshold which needs to be crossed. However, it seems to me that this approach to the meaning of “doing” must be right, both legally and ethically. The very important corollary of this is that, as set out in more detail here, advance decisions may well be more ‘brittle’ than some may understand to be the case – and that it is extremely important that any advance decision includes a values statement so as to be able to guide decision-making in the event that (as here) the decision is ultimately one made by reference to best interests, rather than simply loyally seeking to abide by the ADRT.
