AB (ADRT: Validity and Applicability), Re [2025] EWCOP 20 (T3)

[2025] EWCOP 20 (T3)Case No COP20006397Date 10/06/2025
IN THE COURT OF PROTECTION
Before
MR JUSTICE POOLERe AB (ADRT: Validity and Applicability)NHS STAFFORDSHIRE AND STOKE-ON-TRENT INTEGRATED CARE BOARDApplicant(1) AB (by his litigation friend, the Official Solicitor)(2) MIDLANDS PARTNERSHIP UNIVERSITY NHS FOUNDATION TRUST(3) CD(4) EFRespondents
Hearing Hearing dates: 22 and 23 May 2025
Nicola Kohn (instructed by Mills & Reeve LLP) for the Applicant
Ian Brownhill (instructed by MJC Law for the Official Solicitor) for the First Respondent
Benjamin Harrison (instructed by Capsticks LLP) for the Second Respondent
Catherine Dobson (instructed by Advocate) for the Third Respondent
Parishil Patel KC and Eliza Sharron (instructed by Irwin Mitchell LLP) for the Fourth Respondent
JUDGMENT
This judgment was handed down remotely at 10.30am on 10 June 2025 by circulation to the parties or their representatives by e-mail and by release to the National Archives.
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This judgment was delivered in public but a transparency order is in force. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of AB, CD, members of AB’s family and the treating clinicians anonymised within the judgment, must be strictly preserved. All persons, including representatives of the media and legal bloggers, must ensure that this condition is strictly complied with. Failure to do so may be a contempt of court.

Introduction

[1]An Advance Decision to Refuse Treatment (“ADRT”) is a very important document which, if valid and applicable, may result in life sustaining treatment being withheld or withdrawn from a person when they have no capacity to make that decision for themselves and irrespective of their best interests. This case demonstrates difficulties that can arise when: 1.1. An individual who has made an ADRT does not provide it to a healthcare professional or make clear arrangements for it to be brought to the attention of clinicians in the event that they lose capacity to make decisions about their own medical treatment. 1.2. The authenticity, validity and applicability of an apparent ADRT are the subject of dispute amongst the individual’s loved ones and family. 1.3. An ADRT which is the subject of dispute or doubt is not brought promptly to the attention of lawyers, Mental Capacity Act specialists, or the Court of Protection.[2]AB is a 43 year old man suffering a Prolonged Disorder of Consciousness (“PDOC”) due to hypoxic brain damage following a cardiac arrest on 5 May 2024. There is no doubt that currently he lacks capacity to make decisions about his medical treatment and that he has lacked such capacity ever since his brain injury. About a month before he sustained his brain injury and lost capacity, he apparently signed a document entitled “Living Will” within which he set out his position to refuse certain medical treatment, including life-sustaining treatment, in the event that he suffered a serious brain injury from which he was unlikely to recover so as not to require full time care. The circumstances under which that advance decision to refuse medical treatment (“ADRT”) was apparently made, and its validity and applicability are in dispute. Very regrettably, the Court is only now able to make determinations about validity and applicability and, if necessary, will not be able to make determinations about whether the ADRT is a genuine document made by AB as a free agent until later this summer.[3]To protect his identity I shall not provide many details of AB’s life before his brain injury save to say that he was an active man with an interesting and rewarding occupation and that he came from a large family. His mother, EF, effectively represents the family members. AB was engaged to and lived with CD and relations between CD and AB’s family, previously strained, are now fairly described as hostile. Following his hypoxic brain damage, AB received intensive hospital care to keep him alive which led to long-term invasive care which he continues to receive including clinically assisted nutrition and hydration (“CANH”) which keeps him alive.[4]By the Mental Capacity Act 2005 (“MCA 2005”) s24(1), an Advance Decision is a decision made by a person with capacity to make it, aged 18 or over, “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 that 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.” All parties agree that the Living Will apparently signed by AB contained not only instructions about other matters, but also an Advance Decision as defined by MCA 2005 s24(1), i.e. an ADRT.[5]By MCA 2005 s26(1), “(1) If P has made an advance decision which is—(a) valid, and(b) applicable to a treatment, the decision has 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.” The question that arises before the Court and for AB’s treating clinicians is whether the treatment he is receiving, including CANH, should be continued. If AB’s ADRT is valid and applicable to his current life-sustaining treatment, then it has effect as if he were now making a capacitous decision to refuse such treatment. In truth, for reasons set out below, that question ought to have been considered by AB’s treating clinicians from the end of August 2024 and has remained a constant and unresolved question since then.[6]EF and other members of AB’s family including his siblings whose voices she represents, do not believe that the Living Will or the ADRT within it, are the authentic products of AB’s autonomous hand. They believe that either the entire Living Will is a fraudulent document which AB knew nothing about, or that it was signed by him under undue influence. In contrast AB’s fiancée, CD, believes the Living Will is a genuine document freely created and signed by AB. I have witness statements from the men who signed the Living Will as witnesses to AB’s signature, who say that not only did they witness his signature but they helped him with the wording of the document and did so with no input or influence from CD or any other person. Nevertheless, AB’s family members maintain their position. For reasons briefly stated later in this judgment, their position is not fanciful.[7]The dispute about the authenticity, validity and applicability of the ADRT is not academic. In some cases where there is a dispute about an ADRT, a person’s family and treating clinicians might nevertheless agree that it is in the person’s best interests to withdraw life sustaining treatment just as the ADRT stated should happen. That is not the case here, although there has been a very recent shift in the information being given to the family about AB’s prognosis. That shift will lead the family, CD and treating clinicians to re-consider AB’s best interests but at present there is no consensus.[8]A striking feature of this case is that no-one brought the Living Will or the ADRT within it to the attention of AB’s treating clinicians until the end of August 2024, nearly four months after AB sustained his brain damage. Nothing could then be done about the treatment already given: the clock could not be turned back. Nevertheless, another nine months have passed from the time when the ADRT was brought to light. That period of delay contrasts greatly with another application in relation to an Advance Decision that I was required to make at an Out of Hours hearing in 2021 – PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52 – in which an application was made to the Court and determined withing hours of clinicians becoming aware of an Advance Decision.[9]Three broad questions now arise for determination: 9.1. Is the ADRT a genuine document made of AB’s own free will? 9.2. Is the ADRT valid? 9.3. Is the ADRT applicable to AB’s current or future treatment?[10]Answering the first question potentially involves extensive witness evidence. CD has already submitted a large number of witness statements and evidence from a handwriting expert she unilaterally instructed prior to the Court proceedings. The Fourth Respondent has likewise filed and served numerous witness statements and now seeks permission to rely on a linguistics expert. However, following earlier case management decisions, I am concerned in this judgment only with the second and third questions. If I find that the ADRT is not valid and/or not applicable, then the first question will not require determination. If I find that the ADRT is both valid and applicable then, if the Fourth Respondent continues to contend that the ADRT is a fraudulent document or was signed under undue influence, then directions will be given for the resolution of those remaining issues. If ultimately the Court were to determine that the ADRT is valid, applicable, genuine, and made of AB’s own free will, then there will no best interests issue for the Court to determine in relation to the continuation of CANH or the potential administration of CPR or life-saving antibiotics. If, on the other hand, the Court were to find that the ADRT is invalid, not applicable, or is not a document actually made by AB as a free agent, then the Court will be asked to consider whether it is in his best interests to continue to receive CANH and/or other life sustaining treatments.[11]The road to this hearing has been long and winding. 11.1. Shortly before midnight on 4 May 2024 an ambulance was called to AB’s home. AB had a polyp on his vocal cord and had acute shortness of breath. He was taken to hospital where he deteriorated and in the early hours of 5 May 2024 he effectively collapsed. He required an emergency tracheostomy but nevertheless suffered some five to six minutes of pulseless electrical activity – a cardiac arrest. He was moved to the critical care unit and intubated. 11.2. AB was treated at the hospital until 11 June 2024 when he was transferred to an acute rehabilitation ward. A Percutaneous Endoscopic Gastrostomy (“PEG”) was inserted on 21 June 2024. 11.3. On 23 July 2024 AB was transferred to an acute rehabilitation trauma unit at another hospital (for which the Second Respondent NHS Trust (“the Trust”) is responsible). 11.4. According to a witness statement from GH, who is from Corporate Services at the Trust:
“On the 22 August 2024 AB’s partner CD provided the Trust with AB’s last will and testament that was dated April 2024. On the 28 August 2024, the Trust then received a different document titled ‘living will’ that was said to have been written by in April 2024. A letter to a Judge that AB was said to have written in April 2024 was also provided at this time by CD. CD had stated that she had not known about the living will until this time and AB had written it without her knowledge.” 11.5. On 18 September 2024 the Trust convened a best interests meeting at which some family members shared concerns about AB’s vulnerability and relationship with CD and raised doubts about the authenticity of the Living Will. 11.6. In late September/early October 2024 it was recorded in AB’s medical records that he had emerged from his PDOC. 11.7. On 13 November 2024 CD issued proceedings in the Court of Protection seeking to rely on the Living Will to restrict access for family members to AB and applying for her appointment as AB’s Deputy. CD was acting as a litigant in person. The application was listed before the President of the Family Division on 20 November 2024. On the face of the President’s order he noted “some level of uncertainty as to the reliability of the “living will””
. He invited the Official Solicitor to act as Litigation Friend for AB and directed that members of the family be notified of the application. The application was listed for a further hearing before me on 15 January 2025 by which time the Official Solicitor was acting on behalf of AB. 11.8. My order of 15 January 2025 records that “no party has advanced grounds today that AB’s continued medical treatment by the Trust ought to cease because of the Living Will document.” I recorded that the Trust considered that the document ought not to have legal effect and the Official Solicitor was anxious that the status of the document ought to be resolved. All parties agreed that AB ought to be discharged to a suitable rehabilitative placement as soon as was practicable. 11.9. The Court received a witness statement dated 13 February 2025 from GH on behalf of the Trust in which, relying on information from AB’s treating clinicians, she said:
“… the quality of life that [AB] can achieve cannot be predicted until the progress plateaus which may take 2-3 years. Withdrawing AB’s life sustaining treatment such as his PEG again would not be consistent with his living will as he has emerged from PDOC and is due to move to a rehabilitation unit whereby he will have the opportunity to further progress. Any progress made will likely be a factor that positively impacts AB’s quality of life.”
GH also made it clear that the Trust did not believe that the Living Will (or the ARDT within it) was valid under the MCA 2005. 11.10. On 29 March 2025, the application came before me again. All agreed that the legal status of the Living Will required determination, firstly as to its validity and applicability and, if necessary, secondly as to its authenticity and whether it had been made under undue influence. I gave directions for a hearing of the issues of validity and applicability on 22 and 23 May and a pre-hearing review on 12 May 2025. 11.11. With the Court’s approval that it was in his best interests, on 2 April 2025 AB was discharged from the Trust’s care and transferred to a rehabilitative placement which I shall refer to as placement J. The ICB responsible for the funding of AB’s care and treatment at placement J replaced CD as Applicant in the proceedings. 11.12. At the pre-hearing review on 12 May 2025 directions were given for Professor Wade to be jointly instructed to provide a report on AB’s condition and prognosis. 11.13. Professor Wade’s report asserts that AB is in a PDOC, has been since 5 May 2024, that the suggestion that he had emerged from his PDOC did not accord with the evidence within the medical and other healthcare records, and that AB is unlikely ever to emerge from the PDOC and certainly not to recover so that he does not require full time care. All parties except EF accept Professor Wade’s opinion evidence on the issue of AB’s current prognosis. The Trust now accepts that the ARDT is valid and applicable.[12]To summarise, these proceedings were initially brought some six months after AB suffered a catastrophic hypoxic brain injury. They were brought by his fiancée as a litigant in person because she sought to exclude AB’s family from seeing him in hospital. Notwithstanding that it was known to friends of AB who had witnessed him make an ADRT, the document was not brought to the attention of treating clinicians until AB had undergone nearly four months of intensive care and life sustaining treatment. Even then, the fact that the Living Will contained an ADRT refusing CANH made by a man now without capacity and receiving CANH was not raised as a concern to the Court until 15 January 2025. Until shortly before this hearing in late May 2025, the Trust responsible for treating AB between July 2024 and April 2025 considered that he had emerged from his PDOC, that it was too early to give a prognosis, and that the ARDT was not valid. Now, all parties save for the Fourth Respondent accept Professor Wade’s opinion on the issue of AB’s current prognosis and agree that the ARDT is valid and applicable.[13]As well as reading a large volume of written material including statements and medical records, I heard oral evidence from Professor Wade and Dr K who is the lead for the rehabilitative team monitoring and treating AB at placement J.

Professor Wade’s Evidence

[14]Professor Wade is a very experienced Consultant and Professor in neurological rehabilitation. He retired from a full time post in the NHS in 2016. Amongst other contributions to the field, he is one of the co-authors of the Royal College of Physicians National Clinical Guidelines, Prolonged Disorders of Consciousness following Sudden Onset Brain Injury, 2020 (“the RCP PDOC Guidelines, 2020”). He has provided his report in this case at very short notice and the Court is grateful to him for doing so.[15]In his comprehensive and authoritative report, Professor Wade records the events of AB’s admission to hospital and period of cardiac arrest. He advises that radiological imaging even after a month did not reveal significant changes which is unusual, but later imaging confirmed very clear clinical signs of severe hypoxic brain damage:
“His brain imaging studies showed no significant change initially, but a CT brain scan in December 2024 showed evidence of substantial cerebral atrophy. He became able to breathe without a tracheostomy. From an early stage, he has had purposeless large-scale motor movements affecting all four limbs, his face and trunk.”
[16]Professor Wade’s primary conclusions are:
“a) he never emerged from his prolonged disorder of consciousness, and he remains at the lower level of consciousness. b) He has marked motor restlessness with large-scale movements of all four limbs and his trunk which are purposeless but occasionally cause him to fall out of bed and can make care difficult. c) He shows behaviours typical of people in pain or having emotional distress, and less frequently shows behaviours indicative of pleasure. d) He has reached the maximum level he is likely to achieve, and there will be no significant sustained improvement. His actuarial life expectancy is nine years. e) A decline in his responsiveness is likely at some point.”
[17]Professor Wade placed emphasis on the fact that AB’s brain injury was due to hypoxia rather than say trauma or vascular damage. Hypoxia or anoxia causes neuronal damage. Whereas axonal damage may “recover” in the sense that the brain may develop compensatory adaptations, in contrast that does not happen when neuronal damage has occurred. Thus it is recognised that if a patient does not emerge from a PDOC within three months, the prognosis is poor.[18]Professor Wade advises that the RCP PDOC Guidelines 2020 adopt the following criteria to determine whether someone has emerged from a PDOC: “5.20 Patients should demonstrate a consistent response on at least one of the following types and should do so whenever awake (eyes open) and presented with the situation: - Functional use of objects intelligent use of at least two different objects on two consecutive evaluations, with or without instruction. For example, writes or draws using a pen or pencil and uses a comb or a hairbrush to brush hair. - Consistent discriminatory choice making consistently indicates the correct choice from two pictures on 6/6 trials on two consecutive occasions, using at least three different picture pairs. 5.21 They should also show functional interactive communication giving: - evidence of awareness of self gives correct yes/no responses to 6/6 autobiographical questions on two consecutive evaluations - evidence of awareness of their environment gives correct yes/no responses to 6/6 basic situational questions on two consecutive evaluations. 5.22 It is recognised that some people with specific impairment of language may show evidence of awareness of themselves and their environment through behaviour and other non-verbal communication. 5.23 The key features are that the behaviour must be consistent and consecutive whenever the eyes are open (i.e. when the person is aroused and awake).”

gives correct yes/no responses to 6/6 autobiographical questions on two consecutive evaluations

[19]Professor Wade’s opinion that AB has never emerged from PDOC is unequivocal. AB may have shown occasional glimpses of awareness but with no consistency. Records of him assisting with washing or dressing by moving a certain way are equivocal and, in any event, there has been no consistency. Records that AB has “walked” 20 metres refer to assisted movement not movement instigated by AB himself. There has been no consistent trajectory of progression. Determinations at the Trust’s hospital that AV had emerged from his PDOC were not justified by the clinical records and were frankly wrong.[20]Professor Wade rejected the suggestion that a failure to continue rehabilitative measures between about December 2024 and April 2025 has had an adverse impact on AB or his prognosis: he would not have emerged from his PDOC however persistent and intense the rehabilitative therapy he had undergone. Such improvements as have been noted, have been “minimal” and AB may already have entered into a period of decline. He will not improve and there is no prospect at all, according to Professor Wade, of AB regaining capacity to make decisions about his treatment or to a stage where he will not require 24 hour care. “AB sustained his hypoxic brain damage 12 months ago. Recovery of brain function occurs for approximately three months after hypoxic brain damage, with most of that recovery occurring in the first few weeks. In a few people, there may be a minor improvement over the next three months, but further recovery does not occur.”[21]Professor Wade advises that after persistent PDOC for six months (so by about 5 November 2024) there was no realistic prospect of future emergence from PDOC. Indeed, that was unlikely after three months (by 5 August 2024).

Dr K’s Evidence

[22]Dr K leads the rehabilitation team at placement J. She is a clinical psychologist with additional qualifications in neuropsychology. She and her team use the Wessex Head Injury Matrix (“WHIM”) system for monitoring and assessing patients with severe brain injuries including AB. Other assessment systems are available including the SMART system. Dr K had suggested use of a SMART assessor in the event of continuing disputes about AB’s PDOC and prognosis, but she deferred to Professor Wade’s view that a SMART assessment was unnecessary and would add nothing to the knowledge already available about AB. Dr K also deferred to Professor Wade about matters of prognosis.[23]Dr K told the Court that when she liaised with the Trust about transferring AB to placement J she expressly queried the conclusion reached at the Trust that he had emerged from his PDOC. She was then told by email by AB’s Advanced Occupational Therapist that:
“ I have managed to contact [Dr X] our consultant clinical psychologist who stated; I'm not sure that anything was recorded 'formally' as he hasn't properly ticked the RCP boxes. I think we agreed that his use of equipment when mobilising counted as "functional object use" although he hasn't done anything else consistently to my knowledge, and doesn't show any attempts at communication. I hope that makes sense and apologies If I’ve caused any confusion earlier.”
I hope that makes sense and apologies If I’ve caused any confusion earlier.”[24]The Trust’s records had included notes that AB had emerged from his PDOC but, as Professor Wade has advised, there was no documented reasoning for that conclusion. The communication to Dr K from the Trust tends to show that there was no settled view that AB had emerged from his PDOC. There was, at the very least, some confusion about whether AB had or had not emerged from his PDOC upon transfer to placement J which is, to say the least, an unfortunate state of affairs. Dr K told the Court that at placement J, AB has been on one to one observations and that those together with the WHIM assessments have indicated that he is in a PDOC and that he is not on a positive trajectory of improvement. There are initiatives that she and her team are attempting in order to bring about improvements for AB, including changes of medication and other steps to improve his sleep-wake pattern but she accepts Professor Wade’s pessimistic prognosis.

The Trust’s Position

[25]The Trust’s position has changed significantly during the course of these proceedings. Whilst it initially contended that the ADRT within the Living Will was not valid, at the pre-hearing review on 12 May 2025, by which stage Mr Harrison had been instructed as Counsel for the Trust, it informed the Court that it accepted the prima facie validity of the document. When AB was in the care of the Trust it believed that he had a realistic chance of progressing towards a quality of life that it believed he would find (or would have found) acceptable. At the date of the pre-hearing review on 12 May 2025 the Trust believed that the prognosis remained unclear. Following receipt of the up to date records from placement J and Professor Wade’s report, the Trust informed the Court that it did not challenge Professor Wade’s conclusions on the issue of AB’s current prognosis and did not challenge the applicability of the ADRT.[26]The Trust has accepted that it, rather than CD, ought to have made an application to the Court of Protection when the existence of the Living Will had been made known and a serious issue had arisen as to its validity and applicability. It further accepts that it ought to have done more to alert McFarlane P to the fact that it was treating AB contrary to the terms of the ADRT having determined that it was either invalid or inapplicable. The Trust has apologised to the Court for these errors and has informed the Court of a change in its internal protocol. GH has informed the Court:
“I attach to this statement EXHIBIT 1 which contains the Trust’s current guidance on MCA Advance Decisions and Advance Statements. Historically, under paragraph 7.1 of our guidance, the position has been that: ‘It is ultimately the responsibility of the healthcare professional in charge of the service user’s care to decide where an advance decision is valid and applicable in the circumstances. In the event of a disagreement between healthcare professionals, or healthcare professionals and partners, family members or carers, the issue will be referred to the Trust Medical Director who will consider all available evidence and consult relevant colleagues and others to confirm its applicability.’ In light of the issues raised in these proceedings, the Trust has reflected and the guidance mentioned above will be amended to read as follows: ‘If a member of staff has been presented with an existing living will (Advance Decision) that has not already been documented on the electronic system it should be treated as valid unless the member of staff has a doubt as to its validity. If the member of staff has doubt as to its validity and/or applicability, or if there is a disagreement between healthcare professionals, family members and carers as to its validity or applicability, the Advance Decision must be presented to the Trust Head of Mental Health Act and Mental Capacity Act to analyse and refer to the Trust solicitor for further advice if required. An urgent application may also need to be made by the Trust to the Court of Protection to determine the validity and applicability of the Advance Decision in question. Under no circumstance should the member of staff presented with the Advance Decision make a decision to determine its validity and applicability in the event they have a doubt.’ Further to this, in the interests of ensuring that our updated policy is implemented, I wish to assure the court that the Trust is in the process of arranging a training and refresher session to ensure all staff members comply with our policy on Advance Decisions. This will ensure all members of the team are well versed with our policy and prepared for any future situations of a similar nature to this matter.”
Historically, under paragraph 7.1 of our guidance, the position has been that:

The Living Will

[27]There are three documents which AB is claimed to have written shortly before his cardiac arrest: 27.1. A “Last Will and Testament” ostensibly signed by AB on 3 April 2024 and witnessed by LM and NP who signed it on the same date, in which AB revokes all former Wills and dispositions and makes CD his sole beneficiary; 27.2. A “Living Will” also ostensibly signed by AB and witnessed on 3 April 2024; and 27.3. A “Presiding Judge Letter” a densely typed, eleven page document explaining AB’s decisions as set out in the other two documents. It is a deeply personal account of his family and his fiancée in which there is a stark contrast between the damning description of the former and the glowing description of the latter. This document is signed but not witnessed. There is no date by the signature but there is a typed date at the top of the document which is 27 April 2024.[28]The Living Will includes statements of AB’s choices regarding contact with his family should he lose capacity. Those choices are not binding on decision-makers under the Mental Capacity Act 2005 although they are evidence of AB’s wishes and feelings which, if the document is genuine, would be taken into account when making any decisions about contact in his best interests. They are not my concern at this hearing and agreement has been reached, at least on an interim basis, that the family can have contact with AB. Much of the Living Will concerns decisions about medical treatment. The relevant parts of the document which ostensibly amount to an ADRT are as follows (without corrections but with anonymisation and a redaction to protect the identity of a relative who took their own life):
“3. Reasons 3.1 I’m making this living will because: I do not want my life artificially prolonged. I want to stay in control of my life. I want to make my own decisions. I have witnessed loved ones having a bad death. I'm getting older I want to be prepared. I think I might have throat cancer. I want to make choices while I have capacity. I want to make things easier for [CD] 4. Statement of Circumstances 4.1 have witnessed firsthand the impact on those living with dementia and the impact on family. My Nana had dementia before she died, but she died before her death it was just her body surviving. She was a shell of the person she once was, if I ever diagnosed with dementia I would not want any lifesaving intervention such as lifesaving surgeries, lifesaving antibiotics CPR or other lifesaving protocols during any time that I have dementia. 4.2 … if I ever have … sepsis I would want lifesaving treatment. I would not want loss of multiple limbs if this is what was needed due to the sepsis to survive, I would not mind loss of one limb but not multiple limbs, if I needed multiple amputation I would choose to refuse lifesaving and life sustaining treatment. 4.3 I have been explained the impact of brain injuries from suicide, my [relative] hung himself and did not survive, me and my partner were explained the impact of the damage to the brain from hanging, this included the life he would have had and not had if he had survived. From vegetable state to life with permanent life changing disabilities with no quality of life at best. After learning about this I would choose to not have any lifesaving treatment if I were to have a bad brain injury that caused life changing permanent disabilities and no quality of life. I would choose to refuse any life sustaining treatment, I do not want to prolong my life and do not wish for my life to be sustained by medical life sustaining treatment. It is of my personal opinion that it is no life for a dog to live on life sustaining treatment, I wouldn’t put my dog through that, I certainly do not want that for myself. 4.4 I have personally witnessed the devastating effect of dementia, brain damage and life changing disabilities. In a professional capacity I have trained people who have brain damage on different levels and disabilities on different levels, I have nothing against people with dementia, limb loss, brain damage or disabilities, I treat everyone the same with respect but it is not a life I choose for myself, I’m an active person who likes to be in control of my life and I do not want to live with dementia, limb loss, serious brain damage where it causing me to live with permanent life changing disabilities or life altering disabilities. 5. Life sustaining or lifesaving treatment I refuse 5.1 I refuse any medical treatment, including anything intended to prolong or sustain my life in the event that I have dementia, multiple amputation from sepsis or a bad brain injury causing life-long life changing disabilities. The treatment I refuse includes: • cardiopulmonary resuscitation (CPR) • mechanical ventilation, both invasive and non-invasive • clinically assisted nutrition and hydration • antibiotics for life-threatening infections and serious infections 5.2 I’m a very active person and have always been an active person, I would not choose to have tubes or machines keeping me alive, I strictly would not choose to have my life prolonged with dementia, limb loss or bad brain damage causing permanent disabilities. This would not be life to be it would be suffering, I want a dignified death. 6. Quality of life definition 6.1 The impact of health on my ability to live a fulfilling life. Physical, psychological with social functioning and well-being. 6.2 If I were to get dementia, multiple limb loss or a bad serious brain injury I do not want to live in a care home, nursing home and do not want to live a life with 24 hour care where I cannot do basic living for myself example going to the toilet, having a shower, cleaning myself, getting dressed. I want to have the dignity in death that I have in my life, all my life. 6.3 I do not want to live a life on artificial food, hydration or on medication to keep me alive for the rest of my life.” 8. My Decisions 8.1 I confirm that I refuse medical treatment to prolong my life by keep me alive by artificial means in the event of: a. I’m medically diagnosed with and suffering from Dementia or Alzheimer’s I do not want to live with this b. I suffer from severe permanent disability mentally or physically which I’m unlikely to recover to have a quality of life without full time care c. I suffer from bad brain damage which I’m unlikely to recover to have a quality of life without full time care d. I have multiple limb amputations which I’m unlikely to recover to have a quality of life without full time care e. I am unlikely to regain the ability to make these decisions for myself I have told people my wishes above which they will attest to, if I need to refuse medical intervention, I would only want medical treatment to free me from pain. I wish to be given pain relief to alleviate pain and distress aimed at ensuring my comfort. I’m not an organ donor and do not wish to be. I want a dignified death, my grandad was a strong, dignified man who had a dignified death. I want a dignified death, I want to protect my wishes.”

The Law on Advance Decisions to Refuse Treatment

[29]The relevant statutory provisions on ARDTs are found in MCA 2005 ss24-26. “24 Advance decisions to refuse treatment: general(1) “Advance decision” means a decision made by a person (“P”), 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 that 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.(2) For the purposes of subsection (1)(a), a decision may be regarded as specifying a treatment or circumstances even though expressed in layman's terms.(3) P may withdraw or alter an advance decision at any time when he has capacity to do so.(4) A withdrawal (including a partial withdrawal) need not be in writing.(5) An alteration of an advance decision need not be in writing (unless section 25(5) applies in relation to the decision resulting from the alteration).”[30]Thus, by MCA 2005 s24 an Advance Decision is a decision made by a person who is 18 or over who has capacity to make the decision and who has not withdrawn or altered the decision at any later time when they had capacity to withdraw or alter it. Only a decision which is of a kind set out at MCA 2005 s24(1) is an Advance Decision to refuse medical treatment.[31]Assuming that AB’s Living Will is authentic and was made by AB and signed by him on the date indicated on the face of the document, then he was over 18 when he made it and he had capacity to do so. He has lacked capacity to consent to the carrying out or continuation of any medical treatment since the early hours of 5 May 2024. Parts of the document are expressed in layman’s terms, such as the references to a “bad brain injury” but the document clearly specifies circumstances in which he now finds himself and identifies treatment which he is now receiving– he is being treated with CANH in hospital to prolong his life having suffered a serious brain injury which has deprived him of his capacity to make decisions about such treatment. There is no evidence that, whether in writing or otherwise, AB withdrew or altered the ADRT when he had capacity to do so. There was a short time between the making of the ADRT and AB’s cardiac arrest and hypoxic brain damage. The Letter to Presiding Judge did not alter the ADRT.[32]MCA 2005 s25 provides:
“25 Validity and applicability of advance decisions (1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P unless the decision is at the material time— (a) valid, and (b) applicable to the treatment. (2) An advance decision is not valid if P— (a) has withdrawn the decision at a time when he had capacity to do so, (b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or (c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision. (3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it. (4) An advance decision is not applicable to the treatment in question if— (a) that treatment is not the treatment specified in the advance decision, (b) any circumstances specified in the advance decision are absent, or (c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them. (5) An advance decision is not applicable to life-sustaining treatment unless— (a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and (b) the decision and statement comply with subsection (6). (6) A decision or statement complies with this subsection only if— (a) it is in writing, (b) it is signed by P or by another person in P's presence and by P's direction, (c) the signature is made or acknowledged by P in the presence of a witness, and (d) the witness signs it, or acknowledges his signature, in P's presence. (7) The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable.”
[33]Important guidance is set out in Chapter 9 of the Mental Capacity Act Code of Practice as endorsed by the Court in X Primary Care Trust v XB [2012] EWHC 1390 Fam, see also NHS Cumbria CCG v Rushton [2018] EWCOP 41.[34]If the ADRT is an authentic document, freely made and signed by AB, and is valid and applicable to life sustaining treatment which he is receiving, then the question of whether continuation of that life-sustaining treatment is in his best interests does not arise. By MCA 2005 s 26:
“26. Effect of advance decisions (1) If P has made an advance decision which is— (a) valid, and (b) applicable to a treatment, the decision has 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. (2) A person does not incur liability for carrying out or continuing the treatment unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment. (3) A person does not incur liability for the consequences of withholding or withdrawing a treatment from P if, at the time, he reasonably believes that an advance decision exists which is valid and applicable to the treatment. (4) The court may make a declaration as to whether an advance decision— (a) exists; (b) is valid; (c) is applicable to a treatment. (5) Nothing in an apparent advance decision stops a person— (a) providing life-sustaining treatment, or (b) doing any act he reasonably believes to be necessary to prevent a serious deterioration in P's condition, while a decision as respects any relevant issue is sought from the court.” while a decision as respects any relevant issue is sought from the court.”

The Parties’ Positions

[35]Every party except for the Fourth Respondent contends that AB’s ADRT, if genuine and freely made by him, is valid and applicable within the meaning of MCA 2005 s25. At this hearing I have not heard evidence as to the authenticity of the document and so I cannot find that there has been compliance with s25(6)(b) to (d). I have not yet determined whether AB signed the document, whether he did so in the presence of a witness, or whether he was present when the witnesses signed it. The Fourth Respondent contends that the document is a fake document. If it is a fake or forgery then AB did not sign it and the purported witnesses, who have provided statements to the Court that they were present with AB when his and their signatures were added, are parties to a fraud. However, assuming for present purposes that the document and signatures are authentic, the Fourth Respondent invites the Court carefully to consider whether the ADRT is nevertheless invalid pursuant to MCA 2005 s25(2)(c) and/or is not applicable pursuant to MCA 2005 s25(4)(b). Before I address those issues, I should comment on some matters which whilst not in dispute in the present case, are of some importance when considering a document purporting to be an ARDT binding on decision-makers under the MCA 2005.

Interpretation of the Advance Decision to Refuse Treatment

[36]To re-iterate, the ADRT is that part of the Living Will that deals with decisions about future medical treatment. When interpreting the Advance Decision, I am mindful that it has not been written by a lawyer and that some of the grammar is awry but the Act itself requires the Court to take that into account – s24(2). There is no requirement for an ADRT to be in any specific form or for specific wording to be used. The Court should not seek to interpret an ADRT as if it were a statute or a commercial contract drafted by lawyers but I must nevertheless consider the wording and seek to interpret the document in order to discern what AB’s decisions were.[37]At paragraph 4.3 of the Living Will, AB wrote:
“I would choose to not have any lifesaving treatment if I were to have a bad brain injury that caused life changing permanent disabilities and no quality of life.”
At paragraph 8.1(c) he wrote:
“I confirm that I refuse medical treatment to prolong my life by keep me alive by artificial means in the event of: … c. I suffer from bad brain damage which I’m unlikely to recover to have a quality of life without full time care.”
Professor Wade commented on the expression “no quality of life”, questioning what that meant. One might also point to the difference between “lifesaving treatment” and “treatment to prolong my life”. It might be said that AB was choosing not to consent to treatment to save his life following a severe brain injury and only if he was going to be left with “no quality of life”. However, no party urged me to interpret the document that way and I readily accept that, taking the document as a whole, AB was refusing his consent to certain treatments following a “bad brain injury” in circumstances when he was unlikely to recover to a point where he would not require full time care. Clinicians and the court do not have to question whether he has “no quality of life” only whether he is unlikely to recover so that he will not need full time care.[38]One question of interpretation that arises is how paragraph 8.1(e) sits with paragraphs 8.1(a) to (d). Paragraphs 8.1(a) to (d) are, on the face of it, in the alternative. AB did not intend to refuse medical treatment to prolong his life in the event of his suffering dementia, severe permanent disability, bad brain damage, and multiple limb amputation. He intended to refuse medical treatment even if he suffered only one of those conditions. Is 8.1(e) a further alternative condition or is it a condition which must be met in addition to one of 8.1(a) to (d)?[39]The use of the expression “these decisions” in paragraph 8.1(e) means that AB intended this criterion to be additional to each of the alternative conditions set out at 8.1(a) to (d). Sub-paragraph (e) expressly refers to the treatments which are set out at the other sub-paragraphs. Those other sub-paragraphs do not refer to each other – only 8.1(e) cross-refers. AB’s emphasis on the importance of him exercising his autonomy also indicates that this is the correct interpretation. If AB were likely to regain capacity then he would want the chance to make a decision for himself in the circumstances as he would then know them to be. Paragraph 8.1(e) must be satisfied alongside one or more of 8.1(a) to (d) for his decision to refuse treatment to take effect. AB was refusing treatment to prolong his life if both one of 8.1(a) to (d) applied, and 8.1(e) applied. Again no party argued otherwise.[40]The conditions which I have to consider with particular care are those at paragraphs 8.1(b), (c) and (e). Whether those conditions are met depends on AB’s post-injury prognosis. He decided to refuse medical treatment to prolong his life in the event of his suffering from “severe permanent disability” or “bad brain damage” only if “I’m unlikely to recover to have a quality of life without full time care.” Thus, if he were to suffer severe brain damage but was likely to recover to have a quality of life that required some care but not full time care, he was not refusing medical treatment to prolong his life. Similarly, he did not refuse medical treatment to prolong his life in the event that he was likely to regain capacity to make a decision about his treatment following “bad brain damage” even if he would be unlikely to recover so as not to require full time care. This has the potential to create some uncertainty. Following severe brain damage, the prognosis may not be clear for some time. Similarly, an individual might suffer severe permanent disability but recover to the extent that they do not require full time care. Asked whether it is likely that, if they survive, a brain-damaged individual will always require full time care, treating clinicians might well respond that it is too early to tell. The way that AB’s Advance Decision is worded, his refusal of treatment to prolong his life after “bad brain damage” only applies when he is “unlikely to recover.” Therefore the ADRT is only potentially applicable once the point has been reached when clinicians (or experts) are able to say that it is unlikely that AB will recover so as not to require full time care and so as to recover capacity.[41]Returning then to the specific statutory provisions that the Fourth Respondent suggests might render AB’s ADRT invalid or not applicable, namely MCA s25(2)(c) and s25(4)(b). I was required to consider MCA s25(2)(c) in PW (above). In that case I held that:
“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 than 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 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.”[42]No party has taken any issue with that analysis. In particular, no party suggested that, as a matter of principle, for the purposes of s25(2)(c) the Court should disregard what AB has done after he lost capacity to make decisions about his treatment. Whilst the Courts have to make binary decisions about whether P has or has not lost capacity to make decisions about their treatment, it does not follow that everything P says and does after losing capacity should be disregarded. In a different case a person might lose capacity but still be able to vocalise a desire not to be bound by the ADRT they had previously made. It would be troubling if that was to be wholly disregarded.[43]On Professor Wade’s evidence, supported by Dr K, AB has been in a prolonged disorder of consciousness for over a year. I accept their opinion evidence as persuasive and, although scrutinised, not seriously challenged. In this case, the extent of AB’s cognitive impairment is such that the Court could not rely on anything he has said or done since losing capacity as being inconsistent with the ADRT being his fixed decision. Sadly, intermittent smiling in the presence of his fiancée or family members is not inconsistent with the ARDT remaining his fixed decision. Indeed, he is not capable, and has not been since 5 May 2024, of having any thought process about his ADRT. MCA s25(2)(c) has no application to AB and I am quite satisfied that none of the statutory conditions for finding that the ARDT is not valid are met in this case.[44]Is the ADRT inapplicable under MCA 2005 s25(4)(b)? Professor Wade’s opinion is that AB will never emerge from his PDOC. Dr K deferred to Professor Wade on prognosis. Whilst GH from the Trust has given contrary evidence based on information given to her by treating clinicians, Professor Wade’s evidence was very persuasive and he addressed the apparent discrepancies between healthcare records suggestive of progress and even of “emergence” from PDOC. As he said, “one swallow does not make a summer”. There is no evidence of consistent responses or use of objects nor of any initiation. Mr Patel KC understandably questioned the degree of certainty with which Professor Wade held to the view that AB will never emerge from PDOC, but even if the Court accepted that there remains a very small chance of that happening, the Court can confidently find that it is “unlikely” that AB will ever recover so as not to require “full time care”. Professor Wade said that he was as certain as he could be of anything in life that AB will always require full time care. I accept that evidence.[45]Thus, I find that the ADRT did specify circumstances in which AB now finds himself: he is receiving CANH, a treatment designed to prolong his life, when he has a permanent severe disability due to a “bad brain injury” from which he is unlikely to recover to the extent that he will not require fulltime care. Further, he is unlikely ever to regain capacity to make decisions for himself about his medical treatment, including life-sustaining treatment. MCA 2005 s25(4)(b) does not render the ADRT inapplicable. I am satisfied that the ADRT is applicable.[46]Although the parties have not contended that MCA 2005 s25(4)(c) might apply to render the ADRT inapplicable, I have considered whether the fact that AB is now receiving treatment over a year on from losing capacity and suffering a “bad brain injury” might constitute circumstances he had not anticipated. It is a striking feature of the written evidence thus far received in this case that, having witnessed AB make such solemn decisions in his Living Will so soon before he suffered a catastrophic brain injury, those who knew about the document did not bring it to the attention of those treating him or his loved ones until nearly four months later. It might be said that AB could not have anticipated such circumstances nor that he would have been kept alive for so long before a decision was made about the effect of his ADRT. However, MCA 2005 s25(4)(c) may render an ADRT non-applicable only if the unanticipated circumstances, “would have affected his decision had he anticipated them”. Here, the terms of the ADRT are very clear - AB did not want his life prolonging in the circumstances in which he now finds himself. He may not have anticipated the delay in giving effect to his ADRT but, assuming that the ADRT is genuine, I am certain that the delay would only have reinforced his decision – it would not have changed it.[47]The Fourth Respondent and other family members have alleged that the Living Will is a fake document, alternatively that it was signed by AB under undue influence. The MCA 2005 does not directly address how such allegations might be dealt with by the Court or the impact of any such findings on an ADRT. It seems to me to be self-evident that if an ADRT were written by someone other than P, without their knowledge and/or after they lost capacity, then the document is not P’s Advance Decision and so none of the provisions of MCA 2005 s24-26 apply. There is no Advance Decision to consider, there is only a document fraudulently presented as an Advance Decision. If P did not sign the ADRT it is in fact not applicable to life sustaining treatment pursuant to MCA 2005 s25(6). The relevance of the concept of undue influence to ARDTs has not been tested in the courts, so far as I am aware and I have not heard submissions on the issue which will arise for consideration only if I find that the ADRT is otherwise valid and applicable. In the context of a will the burden of proof of proving undue influence lies on the person who alleges it, undue influence may be found where the testator was not a free agent when they made their will – they were manipulated by coercion or fraud - and the Court can find a will to be invalid for undue influence. It may be that the same approach should be adopted to an apparent ADRT.[48]If the Court were to determine that the ADRT was not made by AB or was invalid due to undue influence (assuming for now that that an ADRT can be found to be invalid as a consequence of undue influence) then the document would not have the effect of an Advance Decision under the MCA 2005. Nevertheless, the Court of Protection might be invited to consider whether, given that AB cannot make the decision for himself, it is in his best interests for CANH to be withdrawn and for declarations to be made regarding ceilings of care including in relation to CPR and the use of antibiotics for a potentially life-threatening infection.

Conclusions

[49]My determinations are that, subject to compliance with MCA 2005 s25(6), the ADRT is valid and applicable. I have not determined that AB made and signed the ADRT, a matter which is currently disputed. Given that the Court is still considering that remaining issue of validity, MCA s26(5) allows treating clinicians to continue to provide life-sustaining treatment. Unless all parties agree that it is in AB’s best interests to withdraw life-sustaining treatment, in which event further determinations about the authenticity of the ADRT would not be required in this case, the Court will have to determine whether the ADRT is authentic, made and signed by AB free from undue influence and, if not, whether it is in his best interests to withdraw life sustaining treatment. For obvious reasons, I am anxious to avoid any further delay in making the necessary remaining determinations.[50]I announced my determinations at the hearing and then considered further case management.[51]I considered whether it was necessary and proportionate to litigate the Fourth Respondent’s contentions that the ADRT is either a fake document or was signed by AB under undue influence. Mere assertion of such a case without any grounds might well result in the Court exercising its case management powers to avoid a substantial hearing on those assertions. Here, however, I am satisfied that the Fourth Respondent’s contentions merit proper, but proportionate, consideration by the Court: 51.1. There is evidence from the family that the style of language used in the ADRT and the letter to the Presiding Judge is not at all typical of AB. 51.2. The family has provided evidence that there are plain errors in the documents which suggest that they were not made by AB, for example in the pet-name he gave his grandmother. 51.3. The family has given evidence that some of the assertions made in the documents are at odds with AB’s communications with them at the time. 51.4. The documents were produced so late after AB’s brain injury. It is a legitimate question to ask why those who knew he had made the ADRT would not produce it if it had indeed been made before he lost capacity. 51.5. The document was produced after a significant falling out between CD and the family and was relied upon by CD to seek to exclude the family from involvement in AB’s life and decision-making about his treatment.[52]These concerns might all be resolved. I note that there are two witnesses to the ADRT who have made statements to the Court. I also note that CD brought her application not to secure compliance with the ADRT but to exclude the family from contact with AB in hospital. As for the allegation of undue influence, it would be odd to manipulate AB into signing the document when he had capacity and then to fail to bring it to anyone’s attention for four months after his brain injury. Nevertheless, the concerns raised by the family merit proper and proportionate scrutiny. Accordingly, I have listed a final hearing for four days beginning on 30 June 2025 for determination of the outstanding issues of authenticity and undue influence and, if necessary, whether continuation of life sustaining treatment is in AB’s best interests. However, I refused applications by the Fourth Respondent to rely on expert linguistics evidence, and by the Third Respondent to rely on expert handwriting evidence. I was not satisfied that such expert evidence was necessary to assist the court to make determinations of fact. I also indicated that I was minded to limit the number of witnesses each party could call as to the authenticity of the Living Will and other documents.[53]There are few reported judgments concerning ADRTs and none have the unfortunate history of this case. The Trust has rightly accepted responsibility for failing to address the apparent ADRT in a proper and timely manner once it was brought to light. This case provides some important lessons for individuals who have made an ADRT or are contemplating doing so, for their families and friends, and for clinicians and NHS Trusts. They include: 53.1. The MCA 2005 Code of Practice, paragraph 9.38 states:
“It is the responsibility of the person making the advance decision to make sure their decision will be drawn to the attention of healthcare professionals when it is needed. Some people will want their decision to be recorded on their healthcare records. Those who do not will need to find other ways of alerting people that they have made an advance decision and where somebody will find any written document and supporting evidence. Some people carry a card or wear a bracelet. It is also useful to share this information with family and friends, who may alert healthcare professionals to the existence of an advance decision. But it is not compulsory. Providing their GP with a copy of the written document will allow them to record the decision in the person’s healthcare records.”
An ADRT will not be effective if the relevant people do not know it exists. In the present case the ADRT had not been placed in AB’s medical records or provided to his GP before he sustained his brain injury. AB relied on friends to alert healthcare professionals of the ADRT but they did not do so for nearly four months after his brain damage was sustained. Any individual wanting to make an ADRT would be well-advised both to (i) provide a copy to their GP, and (ii) give clear instructions to anyone else to whom they provide a copy to bring it to the immediate attention of healthcare professionals in the event that the individual is unable to make decisions for themselves about their medical treatment. 53.2. Disputes about the authenticity of an ADRT may be rare but provision of the document to the individual’s GP would avoid any later allegations that the document was made at a later date than appears on its face. 53.3. A signed, written ADRT that is valid and applicable to the clinical situation is legally binding on clinicians. There is no need for a best interests discussion because the patient has made their decision and it is to be treated as if it is their decision at the time when a question of treatment arises. The wishes of the family cannot override a valid and applicable ADRT nor can clinicians’ views of the wisdom of the ADRT. 53.4. The RCP PDOC Gudelines 2020 state:
“Where there is genuine doubt about the capacity of the patient at the time to make the ADRT or about its validity or applicability, legal advice should be sought and, if necessary, an application made to the Court of Protection.” (paragraph 4.5.1).”
The Trust’s previous internal guidance did not follow the RCP PDOC Guidelines 2020 in this respect. Furthermore, the Guidelines emphasise that clinical teams should request a copy of the ADRT and not rely upon a report of what it says. These documents require careful consideration as Hayden J said in NHS Cumbria CCG v Rushton (above):
“25. Mrs Rushton’s circumstances do however provide an opportunity for this Court to emphasise the importance of compliance both with the statutory provisions and the Codes of Practice, when preparing an Advance Decision. Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes. The Court has highlighted the profound consequences of non-compliance with the requirements: W v M and S and A NHS Primary Care Trust [2012] COPLR 222; Re D [2012] COPLR 493. 26. It perhaps requires to be said, though in my view it should be regarded as axiomatic, that the medical profession must give these advanced decisions the utmost care, attention and scrutiny. I am confident the profession does but I regret to say that I do not think sufficient care and scrutiny took place here. The lesson is an obvious one and needs no amplification. Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.”
AB’s apparent ADRT demanded careful scrutiny as soon as it was brought to light. That ought to have involved some immediate enquiries to ascertain its validity and consideration of its applicability. Once doubts were raised about its authenticity there was a need for an application to the Court of Protection. 53.5. A prolonged disorder of consciousness is one in which the patient is unconscious for more than four weeks (RCP PDOC Guidelines 2020, paragraph 1.1). For a patient in a PDOC, in the absence of a known ADRT, those responsible for treating P will need to follow the best interests guidance within the RCP PDOC Guidelines 2020 and within caselaw such as NW London CCG v GU [2021] EWCOP 59. The emergence of a patient from PDOC is of considerable importance and should be recorded only when the criteria for emergence are met and recorded. The importance of a finding of emergence can hardly be understated. It is relevant to decision-making about treatment and best interests, as well as to communications with the family and long-term planning. In the present case it was also crucial to the applicability of the ADRT which the Trust had at the time when it recorded emergence. Accepting Professor Wade’s opinion, it is regrettable that professional rigour was not applied at the time when it was wrongly noted that AB had emerged from his PDOC when under the care of the Trust. That error has contributed significantly to delay in identifying and then resolving the issues in this case. 53.6. MCA 2005 s25(2) sets out when an ADRT is not valid. A clinician is unlikely to know simply by looking at the document whether it has been subsequently withdrawn, whether it has been rendered invalid by the making of an LPA, or whether P has done anything else clearly inconsistent with the ADRT remaining their fixed decision. The Trust’s new internal guidance enjoins a clinician presented with an ADRT to assume that it is valid unless they have doubts about its validity. However, it would be wise for clinicians presented with an apparent ADRT pro-actively to make enquiries - with the family or friends of P if possible - to discover whether there is any evidence that might call into question the validity of the ADRT under MCA 2005 s25(2). 53.7. Unless the ADRT is clear, questions as to its applicability under MCA 2005 ss25(3) and (4) and, if the treatment under consideration is life sustaining treatment, s25(5), require careful consideration and may require legal advice to be sought, as the RCP PDOC Guidelines 2020 recommend. If there is unresolved doubt or an ongoing dispute about the validity, applicability and/or authenticity of an ADRT, then it is likely that an application to the Court of Protection will be required. The Trust accepts that it should have made such an application in this case. Instead, CD made the application but her primary concern at the time of the application was not the ADRT but the parts of the Living Will and Letter to Presiding Judge dealing with contact with members of AB’s family. Hence the issues concerning the ADRT itself were not promptly brought to the Court’s attention until January 2025. The Trust had the resources and experience to make a prompt application for a determination of the validity and applicability of the ADRT and it should have done so. The need to make a prompt application when the validity, admissibility or authenticity of an ADRT are in doubt or dispute is clear: administering a treatment to a person who has refused it through an authentic, valid and applicable ADRT is as unlawful as is providing treatment to a person with capacity who refuses consent to it. MCA 2005 s26(5) allows treatment to be given “while a decision as respects of any relevant issue [relating to an apparent advance decision] is sought from the court” but that is not a reason to delay seeking a decision from the court. 53.8. Even if the ADRT is not valid and/or is inapplicable, it may yet be taken into account in a best interests decision. Furthermore, clinicians and P’s family may agree that P’s best interests coincide with their expressed wishes, even if those wishes were contained in an invalid or inapplicable ADRT. Even if there are disputes about the provision of some treatments, such as CANH, there may be agreement about others, such as CPR. Hence, ongoing consideration of best interests should not be put on hold whilst the validity and applicability (and indeed, authenticity) of an ADRT is being scrutinised. These are processes that should be followed in parallel with each other. 53.9. Any person who questions the authenticity of an ADRT which is ostensibly valid and applicable, or who is concerned that it was made under undue influence, must provide some reasonable grounds for raising those issues. The Courts will not sanction significant delays in resolving disputes about an ADRT without good cause.[54]I am very grateful to Ms Dobson (previously led by Ms Butler-Cole KC) and Advocate for their pro bono representation of the Third Respondent, and all Counsel their assistance with this case.

Cited in 3 later judgments