This judgment was handed down in private but the judge hereby gives leave for it to be reported. The judgment is being distributed on the strict understanding that in any report no person other than the advocates or the solicitors instructing them (and other persons identified by name in the judgment itself) may be identified by name or location and that in particular the anonymity of the patient and the members of her family must be strictly preserved.
In a proposed action
(In Private)
Royal Courts of Justice
Strand, London, WC2A 2LL
Before :
THE HONOURABLE MR JUSTICE MUNBY
Between :
HE | Claimant |
- and - | |
(1) A HOSPITAL NHS TRUST (2) AE (by her litigation friend the Official Solicitor) | Defendants |
Ms Isin Vahib (of Vahib & Co) for the claimant (father)
The Official Solicitor for the second defendant (the patient)
The first defendant (the hospital) was neither present nor represented
Judgment
Mr Justice Munby:
Last Friday afternoon (2 May 2003) whilst I was sitting as urgent applications judge in the Family Division I heard a very urgent application made by a father desperate to save the life of his daughter. Speed was of the essence. The situation facing the court was so urgent and the consequences so desperate that it was wholly impracticable to attempt anything other than the briefest of hearings. There was no time to get everyone to court. The Official Solicitor, Mr Laurence Oates, reacted in the manner which generations of judges have come to expect of the successive holders of that distinguished office. He came over to court himself at very short notice. Such was the urgency that there was no time for me to give judgment before making the order. I now set out the facts and explain why I made the order I did.
The facts
The claimant HE and his family are Muslims. The second defendant AE is his daughter. She is 24 years old. Initially she was born and brought up as a Muslim. Her parents then separated and she and her brother went to live with their mother. The mother became a Jehovah’s Witness and her children followed suit. AE was then brought up as a Jehovah’s Witness.
Unhappily AE suffers from a congenital heart problem, which necessitated surgery when she was a child. She knew that further surgery would be necessary when she became an adult.
On 13 February 2001 AE signed a pre-printed ‘Advance Medical Directive / Release’ (“the Advance Directive”), her signature being witnessed by two Ministers of her Church. It reads as follows:
“I the undersigned [AE] born the 23rd day of September 1978, being one of Jehovah’s Witnesses with firm religious convictions have resolutely decided to obey the Bible command “Keep abstaining … from blood” (Acts 15: 28, 29). With full realisation of the implications of this position I HEREBY:
1 CONSENT (subject to the exclusion of the transfusing of blood or primary blood components) to all such necessary emergency treatment including general anaesthesia and surgery as the doctors treating me may in their professional judgement deem appropriate to maintain life.
2 DIRECT
(a) that such consent is temporary and only effective until such time as I am conscious and sufficiently capable of discussing further proposed treatment and giving informed consent;
(b) that such consent and any subsequent consent that I may give EXCLUDES the transfusion of blood or primary blood components but includes the administration of non-blood volume expanders such as saline, dextran, Haemaccel, hetastarch and Ringer’s solution;
(c) that my express refusal of blood is absolute and is not to be overridden in ANY circumstances by a purported consent of a relative or other person. Such refusal remains in force even though I may be unconscious and/or affected by medication, stroke or other condition rendering me incapable of expressing my wishes and consent to treatment options and the doctor(s) treating me consider that such refusal may be life threatening; and
(d) that this Advance Directive shall remain in force and bind all those treating me unless and until I expressly revoke it in writing.
3 ACCEPT full legal responsibility for this decision and RELEASE all those treating me from any liability for any consequences resulting from such exclusion.”
On 29 November 2002 AE was seen by a doctor in a hospital in the Midlands town where the family lives. She had aortic valve disease. The doctor’s notes record her as being a Jehovah’s Witness and show that the surgery then planned was to take place using erythropoetin to stimulate blood production without the use of blood products.
Unfortunately on 20 April 2003 AE was taken very seriously ill. She was rushed to London by ambulance. Her father tells me that as she left she said to her brother, in the presence of her maternal aunt, “I don’t want to die.” She was admitted on 21 April 2003 to the Adult Intensive Care Unit of the first defendant, a well-known London Teaching Hospital, where she is under the care of a consultant, Dr B. He tells me in a written statement dated 2 May 2003 that on admission AE was “clearly in extremis and had signs of overwhelming septic shock secondary to bacterial endocarditis”. During this period of severe sepsis she had sustained significant damage to her peripheral circulation with extensive necrosis of her hands and feet which would likely require debridement or partial amputation – surgery which would be impossible without significant blood loss.
On admission AE’s mother told the hospital that AE was a Jehovah’s Witness and that consequently she should not receive blood or blood products as part of her treatment. During what Dr B calls “extensive and frank discussion” with the mother and other members of the family the consequences of this inaction were made clear: AE would have a very significantly increased risk of death, trivial haemorrhage could be fatal and the emergency valve surgery which she would require would be impossible. The mother and her relatives remained adamant that the hospital should abide by the Advance Directive “despite the greatly increased risk of death” and treatment continued accordingly.
According to HE, his daughter was sedated and has been unconscious ever since. With what Dr B describes as “aggressive intervention”, including volume resuscitation, high dose vasopressors, steroid therapy, activated protein C and high volume haemofiltration, AE’s condition was eventually stabilised. She no longer required vasopressors or renal support. Steps were taken to minimise blood removed for routine testing and haemopoesis was stimulated with erythropoetin and iron.
More recently her condition has deteriorated. By the time the matter came in front of me at 2.20pm on 2 May 2003 the position was desperate. In his statement (faxed to the court at about 1.30pm on 2 May 2003) Dr B said:
“Her condition has subsequently deteriorated with evidence of continued sepsis either arising from her heart or from her gangrenous feet. In parallel there has been a further decline in her haemoglobin level … and a progressive rise in her blood lactate level, suggestive of an impending terminal decline. It would seem inevitable that she will die within the next 24 hours with the current treatment that she is receiving, but that blood transfusion might slow or even reverse this deterioration. It is however by no means clear that blood transfusion would ensure her survival given the advanced state of her illness.”
On the afternoon of Thursday 1 May 2003 there had been what Dr B calls a “further frank discussion” with the family in which the probable subsequent course of events was made clear by Dr B:
“Her mother and brother have remained adamant that she would not wish to receive blood products even given impending death, although her father, grandmother and fiancé insist to the contrary.”
In his written statement dated 2 May 2003 her father describes the discussion:
“The consultant confirmed … that she must receive a blood transfusion immediately in order to live. The consultant also confirmed that if [AE] has a blood transfusion now that she will have a substantial chance of survival otherwise she will most certainly die within 36 hours from yesterday afternoon.”
The father tells me that the hospital is unable to pursue this line of treatment because of the Advance Directive, taking the view that they could not override it without court intervention. His daughter is still unconscious and unable to express her views. He is convinced that had she been conscious now she would have consented to a blood transfusion. He says:
“In the circumstances I beg this Honourable Court to order that the [hospital] … proceed with any medical intervention [which] is required to keep [AE] alive including blood transfusion … This is the very last chance [AE] will have of surviving … time is running out ... [AE’s] situation is critical and [she] could die immediately if any complications arise.”
There is a very important part of the father’s statement that I think I should set out in full:
“I truly and sincerely believe that this consent order signed by [AE] should not be relied upon for the following reasons:-
(i) That [AE] had rejected her faith as a Jehova’s [sic] Witness since December 2002. She was betrothed to be married to a Turkish man, [X] and that as a condition of the marriage that she would reject her faith as a Jehova’s Witness and revert back to becoming a Muslim.
(ii) She has not attended any of the Jehova’s Witness meetings/congregations and services, which she used to frequently attend twice weekly. She had promised her fiancé that she would not attend these meetings and has not done so since the beginning of January 2003.
(iii) I believe that any consent forms signed by [AE] predated her change of faith and as such, should not be relied upon.
(iv) That [AE] had admitted herself to hospital prior to her collapse, she made no mention of the said consent not to have a blood transfusion to the medical authorities. During this time, [AE] was conscious and aware of what was going on around her.
(v) [AE] remained in hospital for 2 days before she was released and throughout this time, no mention was made with respect to the consent form.
(vi) As stated … above, [AE] confirmed to her brother and aunt after she was readmitted to hospital that “she did not want to die”.
(vii) That approximately two months ago she informed her family that she intended to marry her fiancé and would not allow anything to get in her way and confirmed that she would follow her fiancé’s Muslim faith.
Given the above matters, I am convinced that had [AE] been conscious now, that she would have consented to a blood transfusion without any hesitation as her fiancé has recently arrived to Britain from Turkey and she would have given anything to be with him.”
He adds:
“she would have consented if she were able to do so as she had changed her faith and therefore the consent form would not be valid or effective as a result.”
The hearing
The hearing before me began as I have said at 2.20pm on Friday 2 May 2003. I had the statements of HE and Dr B to which I have referred. Attached to Dr B’s statement were copies of the Advance Directive and the hospital notes for 29 November 2002. Ms Vahib, the claimant’s solicitor, had had no time to issue the proceedings but had notified the hospital that she was making an urgent ex parte application. Dr B’s statement had been faxed to court accompanied by a letter addressed to me from the Trust’s corporate and legal services apologising that no-one from the Trust would be in attendance at court due to the late notice that, understandably, the Trust had been given. Ms Vahib told me that the Official Solicitor was on his way to court: Mr Oates arrived very shortly after the hearing had begun. He and I read the papers as quickly as possible.
Since it was apparent that AE was and had for some time been sedated and unconscious, and that she was therefore incapable of managing and administering her own affairs, the Official Solicitor agreed to act as her litigation friend. While he was speaking to the hospital I was able to consult a convenient textbook (Kennedy & Grubb, Principles of Medical Law (ed 1998), paras 3.09 and 4.105-4.114) and to locate the crucial authorities: In re T (Adult: Refusal of Treatment) [1993] Fam 95 and Re AK (Medical Treatment: Consent) [2001] 1 FLR 129.
I returned to court and indicated that in the light of those authorities and the evidence I had read it seemed to me that there must, putting the matter at its lowest, be considerable doubt as to whether the Advance Directive was still valid and applicable and that I was therefore minded to grant the claimant the relief he was seeking. The Official Solicitor addressed me briefly, but did not seek to persuade me to any different conclusion. I then made the order that is set out at the end of this judgment. I said I would give my reasons later. The Official Solicitor asked that I should in particular consider the legal effect of paragraph 2(d) of the Advance Directive. I now (7 May 2003) give judgment.
So much for the facts. I turn to the law.
The law
There is now quite a substantial body of authority relevant to the issues I have to consider. It is all too well-known to require either description or much analysis: see In re T (Adult: Refusal of Treatment) [1993] Fam 95, Airedale NHS Trust v Bland [1993] AC 789, In re C (Adult: Refusal of Treatment) [1994] 1 WLR 290, Re MB (Medical Treatment) [1997] 2 FLR 426, St George’s Healthcare NHS Trust v S [1999] Fam 26, Re AK (Medical Treatment: Consent) [2001] 1 FLR 129 and Re B (Consent to Treatment: Capacity) [2002] EWHC 429 (Fam), [2002] 1 FLR 1090.
Some propositions are, in my judgment, now so well established in our law as no longer to require either justification or elaborate citation of authority. They are:
A competent adult patient has an absolute right to refuse consent to any medical treatment or invasive procedure, whether the reasons are rational, irrational, unknown or non-existent, and even if the result of refusal is the certainty of death. I agree with Professor Andrew Grubb’s observation (see [2002] Med L Rev 201 at 203) that:
“English law could not be clearer. A competent adult patient once properly informed, has the unassailable legal right to refuse any or all medical treatment or care.”
Consistently with this, a competent adult patient’s anticipatory refusal of consent (a so-called ‘advance directive’ or ‘living will’) remains binding and effective notwithstanding that the patient has subsequently become and remains incompetent.
An adult is presumed to have capacity, so the burden of proof is on those who seek to rebut the presumption and who assert a lack of capacity. It is therefore for those who assert that an adult was not competent at the time he made his advance directive to prove that fact.
I need not consider in any detail the legal conditions for a valid advance directive. Derived in large measure from In re T, they can be found summarised, I believe correctly, (Footnote: 1) in Kennedy & Grubb, Principles of Medical Law, para 4.108. For present purposes what is important is to focus on the three particular issues to which I now turn.
The law – burden and standard of proof
The first relates to what may be called the burden and standard of proof of an advance directive.
Burden of proof: In my judgment, although the burden of proof on the issue of capacity is on those who seek to dispute it, the burden of proof is otherwise on those who seek to establish the existence and continuing validity and applicability of an advance directive. So if there is doubt that doubt falls to be resolved in favour of the preservation of life.
Standard of proof: Clear and convincing proof is required. I do not suggest that anything more than the usual civil standard of proof on a balance of probability is required. But the more extreme the gravity of the matter in issue so, as it seems to me, the stronger and more cogent must the evidence be: cf the discussion in In re H (Minors) (Sexual Abuse: Standard of Proof) [1996] AC 563 of the well-known statement by Ungoed-Thomas J in Re Dellow’s Will Trusts [1964] 1 WLR 451 at p 455. Where, as here, life is at stake, the evidence must be scrutinised with especial care. The continuing validity and applicability of the advance directive must be clearly established by convincing and inherently reliable evidence.
In my judgment no less rigorous an evidential approach is required where the inquiry is not as to the initial validity of an advance directive but (as here) the continuing validity and applicability of an advance directive given in what may be the more or less remote past. Indeed, depending upon the time that has elapsed, and any known changes in the patient’s circumstances during that time, the question of whether an advance directive admittedly made at some time in the past is still valid and applicable may require especially close, rigorous and anxious scrutiny.
That this is the law appears clearly enough from a number of authorities and, in particular, from those parts of the following passages which I have emphasised. I shall take the cases in chronological order. The first is In re T, where Lord Donaldson of Lymington MR said at p 103C that:
“an anticipatory choice … , if clearly established and applicable in the circumstances – two major “ifs” – [will] bind the practitioner”.
Lord Donaldson then referred at p 112E to:
“a conflict between two interests, that of the patient and that of the society in which he lives. The patient’s interest consists of his right to self-determination – his right to live his own life how he wishes, even if it will damage his health or lead to his premature death. Society’s interest is in upholding the concept that all human life is sacred and that it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount. But this merely shifts the problem where the conflict occurs and calls for a very careful examination of whether, and if so the way in which, the individual is exercising that right. In case of doubt, that doubt falls to be resolved in favour of the preservation of life for if the individual is to override the public interest, he must do so in clear terms.”
One needs also to bear in mind Lord Donaldson’s comment at p 114E that an advance directive refusing treatment “may have been based upon an assumption”, in which case, as he observed:
“If … the assumption upon which it is based is falsified, the refusal ceases to be effective. The doctors are then faced with a situation in which the patient has made no decision and, he by then being unable to decide for himself, they have both the right and the duty to treat him in accordance with what in the exercise of their clinical judgment they consider to be his best interests.”
As is pointed out in Francis & Johnston, Medical Treatment: Decisions and the Law (ed 2001), para 1.29, a patient’s consent to treatment will not survive a material change of circumstance. In the same way, as it seems to me, a patient’s anticipatory refusal of treatment will not survive a material change of circumstance. I return to this point below.
The next case is Bland, where Lord Goff of Chieveley said at p 864C that:
“the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so”.
He continued at p 864F with this observation:
“the same principle applies where the patient’s refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it; though in such circumstances especial care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances which have subsequently occurred”.
Finally I should refer to Re AK, where Hughes J at p 134E said that:
“in the case of an adult patient of full capacity his refusal to consent to treatment or care must in law be observed. It is clear that in an emergency a doctor is entitled in law to treat by invasive means if necessary a patient who by reason of the emergency is unable to consent, on the grounds that the consent can in those circumstances be assumed. It is, however, also clearly the law that the doctors are not entitled so to act if it is known that the patient, provided he was of sound mind and full capacity, has let it be known that he does not consent and that such treatment is against his wishes. To this extent an advance indication of the wishes of a patient of full capacity and sound mind are effective. Care will of course have to be taken to ensure that such anticipatory declarations of wishes still represent the wishes of the patient. Care must be taken to investigate how long ago the expression of wishes was made. Care must be taken to investigate with what knowledge the expression of wishes was made. All the circumstances in which the expression of wishes was given will of course have to be investigated.”
The law – formal validity
So much for the burden and standard of proof. The second issue relates to what may be called formal validity. In my judgment, there are no formal requirements for a valid advance directive: there is no legal requirement as to form. Indeed it is implicit in Lord Donaldson’s analysis in In re T, and I have not the slightest doubt this is the law, that an advance directive need not be either in or evidenced by writing. An advance directive may be oral or in writing.
The absence of anything in writing goes only to the practicality of proof. For it may be difficult to establish the existence of a binding oral advance directive given, first, the need for clear and convincing proof founded on convincing and inherently reliable evidence and, secondly, the need to demonstrate (see Kennedy and Grubb para 4.108) that the patient’s expressed views represented a firm and settled commitment and not merely an offhand remark or informally expressed reaction to other people’s problems.
The same principles must, in my judgment, apply to the revocation of an advance directive. If there are no formal requirements for a valid advance directive there can equally be no formal requirements for the revocation of an advance directive. Nor can it make any difference whether the advance directive was itself oral or in writing. An advance directive, whether oral or in writing, may effectively be revoked either orally or in writing. The popular term ‘living will’ may be misleading. The Wills Act 1837 does not apply to an advance directive. An advance directive does not need to be in writing and signed, nor need it be attested by witnesses. Nor, unlike a will, can an advance directive be revoked only by physical destruction or by another document in writing. To put the point plainly. I have no doubt that, in principle, a written advance directive can be effectively revoked orally. So can an advance directive executed under seal.
The law – revocation
This leads me on to the third issue, which lies at the heart of this case though it has been considered but little in the authorities to date: the issue of revocation.
In my judgment 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.
It is, of course, clear that when a previously competent adult patient loses both his capacity to decide whether or not to accept medical treatment and any ability to express his wishes and feelings (Footnote: 2) then a previously valid advance directive that has not been revoked in the meantime will in effect become and, at least as long as the patient continues in that condition, will in effect remain irrevocable. But this is not because the advance directive as such either is or has become irrevocable – it has not. It is simply because there is now no-one who is able to revoke it. Only the patient himself can revoke his own advance directive. That is inherent in the very concept of an advance directive – which is, as I have said, the embodiment of the patient’s autonomy and his right of self-determination. And in the situation postulated the patient no longer has the capacity to revoke his advance directive.
But so long as the patient remains competent, so long as he retains the capacity to decide whether or not to accept medical treatment, it is inherent in the very nature of an advance directive that he may revoke it. Any condition in an advance directive purporting to make it irrevocable is, as I have said, contrary to public policy and void. And the same goes for any provision in an advance directive purporting to impose formal or other conditions upon its revocation. It is contrary to public policy for anyone to stipulate that his advance directive, even if it is itself in writing, shall be binding unless and until revoked in writing. So in the present case, in my judgment, paragraph 2(d) of the Advance Directive is void as being contrary to public policy.
The matter can perhaps be tested in this way. Suppose that in the present case, before lapsing into unconsciousness and at a time when she was manifestly competent, AE had told her doctors, in the most solemn terms and in the presence of an Imam, that she had renounced her faith as a Jehovah’s Witness and rejected Jehovah, that she had then made solemn profession as a Muslin speaking the formal words of that faith (“There is but one God and Mohammed is his prophet”) and had then told her doctors in terms that, being no longer a Jehovah’s Witness, she repudiated the Advance Directive and wished to receive blood transfusions if they were medically indicated – can it seriously be suggested that the Advance Directive would nonetheless remain in force merely because she had lapsed into unconsciousness before executing a document in writing in the terms required by paragraph 2(d)? Of course not. The very suggestion is unthinkable.
A patient who has changed his mind is not to be condemned to death because pen and ink are not readily to hand. An apostate is not to die because he may have stipulated that no change of his mind on a matter touching his faith is to be effective unless uttered in the presence of witnesses. It matters not what may have brought about the patient’s change of mind, assuming that he is acting voluntarily and of his own free will. In the present case AE seems to have been influenced by a wish to return to her original faith in order to marry a Muslim. She is not to be criticised for that. But the point is wider and more general than that. If the patient has changed his mind it cannot matter what his motives may have been. We may applaud the Christian Martyrs who stood steadfast in their faith before the lions in the amphitheatre. But a secular system of law founded on the freedom of the individual cannot hold bound to his previous written statement a patient whose courage fails him as he is wheeled into the operating theatre, whatever he may previously have said in writing.
There being, therefore, no formal requirements for the revocation of an advance directive, and any even self-imposed fetter on a patient’s ability to revoke such a document being contrary to public policy and therefore void, the question of whether an advance directive has been revoked or has for some other reason ceased to be operative becomes a simple question of fact. And on that question, for the reasons I have already given, the burden of proof lies on those who assert the continuing validity and applicability of the advance directive.
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; it may be said that the patient executed the advance directive because he was suffering from an illness which has since been cured; it may be said that medical science has now moved on; it may be said that the patient, having since married or had children, now finds himself with more compelling reasons to choose to live even a severely disadvantaged life. It may be suggested that the advance directive has been revoked, whether by express words or by conduct on the part of the patient inconsistent with its continued validity. It may be suggested that, even though not revoked, the advance directive has not survived some material change of circumstances. But whatever the reasons may be, once the issue is properly raised, once there is some real reason for doubt, then it is for those who assert the continuing validity and applicability of the advance directive to prove that it is still operative. The burden of proof is on them. And, as I have said, what is required is clear and convincing proof. If there is doubt that doubt falls to be resolved in favour of the preservation of life. So, if there is doubt the advance directive cannot be relied on and the doctor must treat the patient in such way as his best interests require.
Whether there truly is some real reason to doubt, whether the doubt is a real doubt or only some speculative or fanciful doubt, will inevitably depend on the circumstances. Holding the balance involves awesome responsibility. Too ready a submission to speculative or merely fanciful doubts will rob advance directives of their utility and may condemn those who in truth do not want to be treated to what they would see as indignity or worse. (I am acutely conscious of, and trust I am properly sensitive to, the profound sense of violation that Jehovah’s Witnesses feel if forced to submit to blood transfusions against their will.) Too sceptical a reaction to well-founded suggestions that circumstances have changed may turn an advance directive into a death warrant for a patient who in truth wants to be treated.
At the end of the day, and however unhelpful for hard-pressed doctors this seeming platitude may be, it must all depend on the facts. All I would add is that the longer the time which has elapsed since an advance directive was made, and the greater the apparent changes in the patient’s circumstances since then, the more doubt there is likely to be as to its continuing validity and applicability. There will be cases in which, as I have said, there will need to be especially close, rigorous and anxious scrutiny.
The law – summary
So far as is material for present purposes I can accordingly summarise the law as follows:
There are no formal requirements for a valid advance directive. An advance directive need not be either in or evidenced by writing. An advance directive may be oral or in writing.
There are no formal requirements for the revocation of an advance directive. An advance directive, whether oral or in writing, may be revoked either orally or in writing. A written advance directive or an advance directive executed under seal can be revoked orally.
An advance directive is inherently revocable. Any condition in an advance directive purporting to make it irrevocable, any even self-imposed fetter on a patient’s ability to revoke an advance directive, and any provision in an advance directive purporting to impose formal or other conditions upon its revocation, is contrary to public policy and void. So, a stipulation in an advance directive, even if in writing, that it shall be binding unless and until revoked in writing is void as being contrary to public policy.
The existence and continuing validity and applicability of an advance directive is a question of fact. Whether an advance directive has been revoked or has for some other reason ceased to be operative is a question of fact.
The burden of proof is on those who seek to establish the existence and continuing validity and applicability of an advance directive.
Where life is at stake the evidence must be scrutinised with especial care. Clear and convincing proof is required. The continuing validity and applicability of the advance directive must be clearly established by convincing and inherently reliable evidence.
If there is doubt that doubt falls to be resolved in favour of the preservation of life.
Discussion
I can take this quite shortly. The father’s case is that the Advance Directive and the record on the hospital notes on 29 November 2002 both predate what he says was his daughter’s change of faith and that, having changed her faith, she would now consent to a blood transfusion if she were able to do so. In any event, he says, the Advance Directive can no longer be relied upon given that change of faith. He points to four matters:
First, the fact that she was betrothed to be married to a Muslim and had agreed as a condition of the marriage to reject her faith as a Jehovah’s Witness and revert to being a Muslim.
Secondly, the fact that, having promised her fiancé that she would not attend any Jehovah’s Witness meetings, congregations and services, she has not done so since the beginning of January 2003.
Thirdly, the fact that on a recent occasion she had been in hospital for 2 days without saying anything about either the Advance Directive or not having a blood transfusion.
Fourthly, the fact that on the occasion I have already referred to she had said that she did not want to die.
On its own, AE’s reported statement that “I don’t want to die” would not necessarily take matters very far, for even the committed Jehovah’s Witness who refuses a blood transfusion in circumstances where she knows that such refusal may very well, or even inevitably, lead to death does not, I would imagine, want to die: see, for example, the comments by Lord Donaldson and Butler-Sloss LJ in In re T at pp 102A and 117E. Nor, taken on its own, does her father’s inevitably rather abbreviated account of the recent hospital admission. But of course both these matters have to be looked at in the context of the overall picture.
The essential, and ultimately compelling, aspect of the father’s case is his clear evidence that his daughter had not merely decided, for the reasons he explains, to reject her faith as a Jehovah’s Witness but had actually implemented that decision, by discontinuing her previously frequent attendance at religious meetings and services. Since it is quite clear that the Advance Directive was founded entirely on AE’s faith as a Jehovah’s Witness – that is made clear beyond argument by the very terms of the Advance Directive itself – it seems to me that it cannot have survived her deliberate, implemented, decision to abandon that faith and to revert to being a Muslim. When the entire substratum has gone, when the very assumption on which the advance directive was based has been destroyed by subsequent events then, as Lord Donaldson put it in In re T, “the refusal ceases to be effective”. The advance directive ceases to have effect, whether or not expressly revoked by the patient. AE’s rejection and abandonment of her faith as a Jehovah’s Witness deprives the Advance Directive of any continuing validity and effect. At the end of the day the point, as it seems to me, is really as short and simple as that.
But even if I am wrong on that, and putting the father’s case at its very lowest, there must in the light of his evidence be very considerable doubt as to whether the Advance Directive is still valid and applicable. There is simply no clear and convincing proof that the Advance Directive is still valid and applicable. The father’s evidence having raised doubts – real doubts, not fanciful doubts or mere speculations – those doubts must be resolved in favour of the preservation of life.
Absent any valid advance directive the matters falls to be considered in the light of principles that are too well-known to require discussion. The doctors must treat AE in the way that in their clinical judgment best accords with her interests: see the passage from Lord Donaldson’s judgment in In re T set out in paragraph [28] above. I must exercise the court’s inherent declaratory jurisdiction by reference to the same standard. What do AE’s best interests require? There can only be one answer. She must have the blood transfusions which, but for the Advance Directive, her doctors would already have given her.
The order
Accordingly, at the end of the hearing I made the following order:
“UPON HEARING the solicitor for the Claimant and Mr Laurence Oates the Official Solicitor
AND UPON the Claimant by his solicitor undertaking to issue a Part 8 Claim Form by 4pm on Tuesday 6 May 2003
AND UPON READING (1) the statement of the Claimant dated 2 May 2003 and (2) a letter (with its enclosures) dated 2 May 2003 from the first defendant enclosing a copy of a statement dated 2 May 2003 of Dr B
AND THE JUDGE being satisfied
(1) that the second defendant is incapable of managing and administering her own affairs and that she lacks the capacity to decide whether or not to accept medical treatment;
(2) that the case is one of grave and immediate medical emergency; and
(3) that there is doubt as to the continuing validity and applicability of (a) an advance medical directive dated 13 February 2001 purportedly made by the second defendant and (b) oral instructions apparently given by the second defendant on 29 November 2002 (hereinafter together with any other such directives or instructions referred to as “the advance directives”)
AND the Official Solicitor having consented to act as the second defendant’s litigation friend and having addressed submissions to the court on her behalf
IT IS DECLARED that the second defendant lacks the capacity to decide whether or not to accept medical treatment
AND IT IS FURTHER DECLARED that (notwithstanding the apparent existence of the advance directives or any of them) it is lawful as being in all the circumstances in the best interests of the second defendant for the first defendant and any doctor or other medical or nursing staff employed or engaged by the first defendant to administer to the second defendant such treatment (including such transfusions of blood or other products) as shall from time to time in the judgment of the treating medical staff be in the best interests of the second defendant.
No order as to costs”
Postscript
I am troubled by the fact that this anxious and difficult case was not brought to the attention of the court by the hospital and that eventually AE’s father was driven in his desperation to take action himself. I do not doubt that the hospital found itself in a very difficult situation and one calling for great sensitivity. And I do not know how much of what the father has now told the court had previously been brought to the hospital’s attention. But may I remind the medical profession and those who administer hospitals or are responsible for giving advice to the medical profession of what Lord Donaldson said in In re T at p 115D:
“If in a potentially life threatening situation or one in which irreparable damage to the patient’s health is to be anticipated, doctors or hospital authorities are faced with a refusal by an adult patient to accept essential treatment and they have real doubts as to the validity of that refusal, they should in the public interest, not to mention that of their patient, at once seek a declaration from the courts as to whether the proposed treatment would or would not be lawful. This step should not be left to the patient’s family, who will probably not know of the facility and may be inhibited by questions of expense. Such cases will be rare, but when they do arise … the courts can and will provide immediate assistance.”
He reiterated this at p 116E:
“In cases of doubt as to the effect of a purported refusal of treatment, where failure to treat threatens the patient’s life or threatens irreparable damage to his health, doctors and health authorities should not hesitate to apply to the courts for assistance.”