By Celia Kitzinger, 14th May 2025
Editorial note: There is a now published judgment, following the later hearing of 22nd and 23rd May) (which will be blogged separately). Click on the link in the name of the case:
Re AB (ADRT: Validity and Applicability) [2025] EWCOP 20 (T3)
The man at the centre of this case (COP 20006397, before Poole J) is in his 40s. On 5th May 2024, he suffered a cardiac arrest resulting in a severe hypoxic brain injury. He was for many months – and may still be – in a prolonged disorder of consciousness.
The key issue before the court is whether or not the “Living Will” provided to Trust doctors around three months after P’s collapse constitutes a legally valid Advance Decision to Refuse Treatment (ADRT) in the terms set out by the Mental Capacity Act 2005 (ss 24-26) – and if so, whether its treatment refusals apply to P’s current situation. Validity and applicability will be the main issues at the next hearing, which is listed for two days (22nd and 23rd May 2025). The family also make allegations that the living will is fraudulent (e.g. that the signature may be forged) and that it may have been written under coercion or undue influence. If necessary, there will be another hearing after the 22nd and 23rd May to consider those issues.
I’ve watched one previous hearing in this case (there have been two – I think – that I’ve not watched) and I blogged about it here: “Determining the legal status of a living will”. At that last hearing, the Trust informed the court that P had “emerged” from his prolonged disorder of consciousness. At this hearing, on 12th May 2025, that statement was put in doubt. It was reported that records from the specialist brain rehabilitation centre to which P was moved on 2nd April 2025, a week after the last hearing, state that P remains in a prolonged disorder of consciousness (a “minimally conscious state”) and that a doctor there says there is no evidence of his having “emerged”. It turns out, belatedly, that there has been no assessment of P by an appropriately qualified medical expert.
There’s also some new evidence that’s been filed since the last hearing: statements from the two people who witnessed P’s signature on his ‘living will’[i]. They report that P’s partner was not present at the time the document was signed, that as far as they knew she wasn’t aware of its existence, and that they didn’t bring it to her attention until they learned about the severity of P’s brain injury some months after his cardiac arrest. They also report that they discussed its contents with P at the time, in one case, comparing personal experiences of relatives with severe brain injury. One witness wrote of P, “he said he would not want to survive in that situation”; the other wrote, “the situation he is in now is like his own nightmare”.
The hearing I’m reporting on in this blog post was a “pre-trial hearing”, i.e. it was an opportunity for all the parties to make representations to the judge about what remained to be done (and by what dates) before the hearing on 22nd and 23rd May, to make sure everything is in place and runs smoothly. The hearing lasted just a little over one hour and addressed two key issues:
- Appointment of an appropriately qualified independent medical expert to report on Ps current condition and prognosis. Nobody opposed this and the judge considered it ‘necessary’ (although there were some issues with funding[ii]). Professor Derick Wade, a consultant in neurological rehabilitation, will assess P, provide a report and give oral evidence at the next hearing.
- Scope of the hearing on 22nd and 23rd May. The scope of the hearing for 22nd and 23rd May was contentious with the ICB, the OS, and P’s partner wanting to include oral evidence and cross-examination from the two people who witnessed P’s living will, and the mother strongly opposing that, since there is further evidence she wishes to gather relevant to their cross-examination which will not be available by that date. (I’m not sure what that evidence is.) The judge had previously decided that the only two issues to be addressed at that hearing would be (1) validity, i.e. does the document comply with the requirements of the Mental Capacity Act 2005; and (2) applicability, i.e. are the treatments being provided treatments P has refused under his current circumstances. The allegations from P’s mother (supported by the wider family) that the ADRT is fraudulent (e.g. the signature is forged) or created through undue influence (and presumably that the two witnesses were part of that conspiracy) were to be decided at a subsequent hearing, if necessary. After hearing from all parties, the judge restated his original decision to consider only validity and applicability at the late May hearing, adding that “if the court were to find the living will either invalid or inapplicable, then there would be no requirement for that further hearing. It may be that if the court were to find that the living will is valid and applicable that the family may take a view on the evidence available as to whether or not it is worth pursuing the issue of authenticity”.
The hearing
The Trust had left it to P’s partner as a litigant in person to bring these proceedings to court and she was initially the applicant. The applicant now (I think at the judge’s suggestion) is the ICB who manage P’s funding at the specialist rehabilitation placement (NHS Staffordshire and Stoke-on-Trent Integrated Care Board). Counsel representing the parties are as follows:
- P’s partner now has pro-bono representation (i.e. for free) via the charity Advocate, from Victoria Butler-Cole KC and Catherine Dobson.
- for the ICB, Nicola Kohn;
- for P (by his litigation friend, the Official Solicitor), Ian Brownhill;
- for the Trust: Benjamin Harrison (at the last hearing it was solicitor Natasha Sond who represented the Trust);
- and for P’s mother Parishil Patel KC along with Eliza Sharron (Ms Sharron was previously counsel for the mother, had authored the mother’s position statement[iii], and was present in court at this hearing but did not address the judge.) The mother is formally the represented party, but her views are shared by those of other family members, including three of P’s sisters and a brother.
It’s striking that six of the seven barristers (Benjamin Harrison at Serjeants’ Inn being the exception) are at 39 Essex Chambers. All seven are highly respected barristers with excellent advocacy skills, which means that the important issues raised by this case should now be addressed with the appropriate level of expertise.
Counsel for the applicant ICB provided a helpful and detailed introduction to the case at the beginning of the hearing[iv], following which each party made updating submissions.
The ICB: NHS Staffordshire and Stoke-on-Trent Integrated Care Board
Counsel for the ICB (Nicola Kohn) reported that “the parties have got together and recognised that regrettably P’s recovery is less than thought, and he may not have emerged from a PDoC [Prolonged Disorder of Consciousness]”. She suggested that this less positive diagnosis may mean that “issues between the parties have narrowed” (i.e. that there are fewer specific points of dispute between them). This (she said) might make possible “a more truncated manner of managing the case” because “if it turns out that Professor Wade says the prognosis is very poor, and if [the witnesses to the living will] say ‘well, these are the circumstances he anticipated’, then the issue of authenticity may fall away […] The hope is that it might be that, having got to the end of the two days, the parties may be in a position to agree a final outcome in P’s best interests, albeit that the Official Solicitor may wish to determine the validity of the living will”.
This strikes me as a pragmatic position to adopt, and one I’ve seen before in disputes (out of court) about the validity and applicability of purported ADRTs. People with intractable disagreements about whether or not a document refusing treatment is legally binding, are sometimes able nonetheless to agree that treatment is not in the patient’s best interests. This may seem an attractive (if possibly optimistic) solution, but in my view, it could lead to the right decision for the wrong reason. In this case, a ‘best interests’ decision to discontinue treatment would worry me, because it has the potential to undermine the statutory provision for ADRTs. It would be open to the interpretation that the criteria for valid and applicable ADRTs are so stringent (and the potential for accusations of fraud and undue influence so potent) that few such documents can sustain legal challenge, and are best treated instead as expressions of ‘wishes and feelings’ (s. 4(6)(a) MCA 2005). This would subvert the statutory provisions of ss. 24- 26 of the Act, and it would leave very vulnerable those of us whose advance decisions to refuse treatment are not viewed by clinicians or the court as being in our own best interests (see my earlier blog post “Determining the legal status of a living will: Personal reflections on a case before Poole J”).
The Trust: Midlands Partnership University NHS Foundation Trust
Counsel for the Trust (Benjamin Harrison) expressed the view that “it’s difficult to separate out allegations of bad faith and fraud, and the court took the decision to consider validity and applicability first, without issues of fraud, which might be the safer course” (so supporting the judge’s initial decision for hearing the case in two stages).
To my surprise, counsel then announced that “the Trust position is that the living will is prima facie valid, and that’s a change in our position”. It certainly was! At the previous hearing, the legal representative for the Trust (Natalie Sond) had said that the written treatment refusals were not valid because P had done things “clearly inconsistent with the advance decision remaining his fixed decision” (s.25(2)(c) MCA 2005). She didn’t say what those things were (I speculated about this in my previous blog post), but based on what I learnt from this hearing, it seems the Trust at that point took the same position said to have been adopted by P’s mother, namely that, by occasionally responding to a therapist, P is indicating that he wishes to engage in treatment, and that this amounts to an act by P which is “inconsistent with the advance decision remaining his fixed decision”.
Their position now has changed, in part as a result of further legal advice: “the Trust is now cognisant of Poole J’s decision in Re PW [Re PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52] that (1) it should not strain to find something done which is inconsistent with the advance decision remaining the individual’s fixed decision and (2) arguable inconsistency, or something which might be inconsistent, does not reach the threshold in section 25(2)(c) MCA 2005”. So, there is no longer any argument from the Trust that the ADRT lacks validity. And the Trust has never alleged coercion or fraud.
One of the treatments specifically refused in the ADRT is clinically assisted nutrition and hydration and P is currently receiving this via a PEG tube. However, the Trust maintains that this treatment refusal is not applicable[v] to P’s current situation (and also that it wasn’t applicable when P was in the care of the Trust). This is on the grounds that “the circumstances specified in the Advance Decision are not currently present”, because “at the one-year point post his hypoxic brain injury, [P’s] prognosis remains unclear”. This is an odd statement given P’s current presentation and the length of time since his hypoxic brain injury. It seems almost indisputable (certainly to anyone familiar with PDOC) that P will remain profoundly disabled and require support with all activities of daily living – precisely the issues that P had specified in the ADRT as causing him to want to refuse treatment due to an unacceptable quality of life.
The ADRT refuses life-sustaining treatment following brain injury in the event that it “caused life changing permanent disabilities and no quality of life”, but according to the Trust, it is not yet clear that P won’t have “quality of life” which, for him, includes: “not living in a care home; not living in a nursing home; not receiving 24-hour care where he cannot meet his own basic needs by going to the toilet, showering, cleaning himself, and getting dressed” (from §42, Trust position statement). The Trust position is that “the question as to whether the circumstances described in [P’s] Advance Decision apply in this case resolves itself into an assessment of [P’s] prognosis, i.e. whether or not the treatment proposed will actually give [P] a realistic prospect of living a life of an acceptable ‘quality’”. Well, yes, and that’s why a proper medical diagnosis and prognosis is needed. According to the Trust, P’s “rehabilitative potential and prognosis” are still unclear, and so the ADRT is not (or not yet) applicable, yet they are “neutral” on the matter of appointing a medical expert.
The reason why P’s “rehabilitative potential and prognosis” are still unclear (and hence, according to the Trust) the ADRT is not applicable, is because the Trust believes (possibly wrongly) that P has emerged from a prolonged disorder of consciousness and because the Trust has not taken any steps to appoint a properly qualified expert to assess P’s diagnosis and prognosis. In other words, in my opinion, it is the Trust’s own negligent inaction, that has – in their analysis – rendered the ADRT “inapplicable”. I find this shocking. It’s also terrifying for those of us with ADRTs that a Trust would decide to simply wait “for two or three years” to see what level of recovery the patient achieves. By that time, of course, treatment refusals may no longer be relevant – as in my sister Polly’s case (see: “Doctors wouldn’t let my sister die”).
The Trust now wishes to apologise for their mismanagement of this case. Counsel for the Trust said “the Trust apologises through me, and you’ll have seen lessons learnt and we accept that that an application should have been made once issues arose as to the validity and applicability of the Advance Decision. The points in Ian Brownhill’s position statement on behalf of the Official Solicitor are fairly made”. I’m not sure to whom this apology was directed. I think it was made to the judge. I hope P’s partner and family also receive a full and frank (written) apology – as my family did (eventually) from the Health Board who administered life-sustaining treatments to my sister Polly without proper reference to the Mental Capacity Act 2005.
It appears (from the section called “Lessons learned” in the Trust’s position statement) that the Trust’s relevant internal policy is “based in large part” on the Mental Capacity Code of Practice 2007. It’s widely accepted by legal professionals that this is out of date and does not reflect developments in law or medicine. It is not, and has never been, “the law”. But I too, interceding on behalf of other families caught up in disputes with Trusts, have been referred (sometimes by Trust lawyers) to passages in the Code of Practice which misrepresent the statute, or interpret it in ways that are not congruent with recent case law. The behaviour of this Trust is sadly not unusual. The Code of Practice urgently needs updating – and until it is, no professional body should rely on it as the basis for their internal policy. The Midlands Partnership University NHS Foundation Trust says its policy and procedures will now be revised and “further training” implemented. It’s most certainly needed.
The Official Solicitor (for P)
Counsel instructed by the Official Solicitor to act for P submitted – clearly and succinctly and with reference to each of the relevant sections of the MCA 2005 – that the ADRT is valid, but that the court is “unlikely to be able to come to a finalised decision as to applicability without medical opinion as to the prospect of neurorehabilitation”. On applicability, the OS position seems to be the same as the Trust’s, i.e. (as the Trust now says) “the applicability of the Advance Decision depends on further and better evidence to establish [P’s] prognosis and rehabilitative potential, with a comparison as to how that fits with [P’s] definition of ‘quality of life’”. The OS says there is no evidence that the ADRT is a forgery but does not currently take any position as to whether P was subject to undue influence – and these matters will in any case not be addressed in the next hearing.
The criticisms of the Trust raised by the Official Solicitor and accepted as “fairly made” by the Trust are as follows:
- The Midlands NHS Partnership Foundation Trust ought to have made an application to the court, in respect of the ADRT, as soon as they became aware of it[vi];
- The Midlands NHS Partnership Foundation Trust should have alerted the President of the Family Division[vii] that they were treating [P] contrary to the ADRT, having determined it was in some way either: (i) invalid or (ii) inapplicable
- The Midlands NHS Partnership Foundation Trust should have made contemporaneous records of their decision making in respect of the validity or applicability of the ADRT.” (More on this below.)
The OS adds that “any dispute between the Midlands NHS Partnership Foundation Trust and the NHS Staffordshire and Stoke-on-Trent Integrated Care Board as to who knew what and when is very unlikely to require resolution within these proceedings”.
Counsel said that it was a “core concern” of the Official Solicitor that there might yet be another hearing (to determine fraud and undue influence) after the 22nd and 23rd May hearing devoted to validity and applicability. The OS position was that it would be “helpful” for the two witnesses to the ADRT to be cross-examined at the next hearing to see if this might further narrow the issues, thereby obviating the need to protract this case further beyond the end of May. (The judge – as I’ve already said – decided against this course of action and stuck to his original decision.)
P’s partner
Acting as counsel for P’s partner, Victoria Butler-Cole KC pointed out that the only party still raising a challenge on the issue of validity was P’s mother, whose position seems to be that P is acting inconsistently with the ADRT remaining his fixed decision by occasionally responding to a therapist. She raised the question (to be addressed in some form by the court-appointed expert): “could someone in a PDOC sensibly be said to be doing something contrary to his ADRT?”
On applicability, “we need to know what the likely outcome is, whether he is in a minimally conscious state or has emerged from a prolonged disorder of consciousness. One year later it’s likely he will be hugely disabled and unable to do things he could do earlier. The question of whether that’s covered by the ADRT is not a legal issue – it’s a medical one, it’s prognosis. The sad reality, looking at the PDOC Guidelines, is they flag up various factors – hypoxic brain injury, more than four weeks in a PDOC, more than a year later hasn’t emerged from MCS [Minimally Conscious State]. All those factors rather strongly suggest that Professor Wade is going to come back with a rather grim prognosis. It’s unfortunate we don’t already have the expert report.”
Commenting on “the immense delay that’s already taken place”, counsel for P’s partner said that many people might not want to receive life-sustaining treatment in this situation. She urged the judge to allow the two people who witnessed the ADRT to give evidence at the next hearing, not least because it might help in establishing P’s views (and hence his best interests) irrespective of issues of the document’s validity and applicability: “At the moment best interests decisions are being put on one side, but two individuals say ‘we met up with him, we spoke with him’: why not hear from them?”. The problem with this, said the judge, is that the family’s position, in what the judge called “I hope not facetiously” their “full blooded case”, is that the living will is a fraudulent document and that “these witnesses must be part of the conspiracy if you like – and I don’t mean that in a derogatory way […] the full-blooded case would be undermining their honesty”. Calling them as witnesses without the family having yet had the time to gather the evidence they want in order to fully scrutinise or challenge them in cross examination (effectively to prove that the witnesses are telling lies) is not fair on the family, said the judge; nor is it fair on the witnesses to be cross-examined “without the case against them, including their possible involvement in a fraud, having been set out and them being given notice of that before they are cross-examined”. I could see his point.
P’s mother (and wider birth family)
Counsel for P’s mother (Parishil Patel) said he did “not accept on behalf of my clients that we can move straight from validity and applicability to authenticity” at the next hearing. He referred to the family’s position statement (which they’ve refused me permission to read) and said there are “a number of pieces of evidence we won’t have by the May hearing” which would make it “unfair” for the two witnesses of the living will to be cross-examined in court at that hearing. He mentioned one such piece of evidence – “potential forensic linguistics experts, based on the family’s concern that the way the document is worded is not something created by their brother, son, whatever”. I gather there are issues relating not only to the living will, but also to P’s last will and testament, and to a “letter to the presiding judge”. Counsel said: “if we’re going to say these documents are not authentic, we’d seek to understand the full context before cross-examining those witnesses”.
Counsel then turned to the issue of validity and applicability and suggested that they “may fall away in any event, or even if they don’t, a consensus may be arrived at, given the likely very bleak prognosis”.
Reflections
I am frankly appalled by the way the Trust has handled this case. The Trust failings as raised by the Official Solicitor (and apologised for by the Trust) have had devastating consequences for P, for P’s partner and for P’s birth family.
For many months, P has continued to receive invasive medical treatment which (if the ADRT is held to be valid and applicable) he will have lawfully refused. His partner, birth family and friends have been left in limbo, with no clear structure or pathway in place for decision-making about P, exacerbating what I understand were existing tensions between P’s partner and his birth family. The mismanagement of this case has caused incalculable harm to people who must have been shocked and distressed by P’s sudden catastrophic brain injury and subsequent prolonged disorder of consciousness. They needed accurate information and support.
As soon as the living will was before them, the Trust should have considered whether or not the purported ADRT it contains was valid within the meaning of s. 25 of the MCA 2005 and applicable to P’s current situation – and if not why not. Documents disclosed by the Trust do not contain any contemporaneous record of their decision that it was not valid and applicable.
A statement written many months later for the court by someone who seems to be the Trust’s Mental Capacity and Liberty Protection Safeguard Lead is a curious jumble of non-sequiturs that fails completely to explain in any coherent way the basis for the Trust’s view that the ADRT is not valid and “does not impact these proceedings”(!). This failure properly to document decision-making is fairly typical in my experience of supporting families in relation to end-of-life decision making. Even when we can get written reasons for Trust decisions, those decisions can be impossible to challenge (except by getting the case to court) because they are based on very poor knowledge of the law, inadequate evidence, and illogical arguments (as in the text of the statement I’ve seen in this case). In court this makes them easy to challenge, of course – but the delay, financial cost, anxiety, and fear of exposure of taking a Trust or Health Board to court makes this a daunting prospect for many people. The hope is that simply explaining that they’ve got it wrong, and here’s what they need to do to put it right, will fix matters. Sometimes it does – but often not.
In my experience, the Mental Capacity Act 2005 is, in practice, whatever distorted version of it medical practitioners, Trust administrators (and even Trust lawyers) believe it to be. That’s the version of the MCA incorporated into internal policies, guidance, memos and forms (like the version of the MCA from the Code of Practice relied on for internal policy by this Trust). I’ve lost count of the number of template forms I’ve seen put out by Trusts which misrepresent the MCA, e.g. by requiring a diagnosis before a functional test is done for capacity assessments, or by stating categorically that an ADRT will be used in best interests decision-making.
For anyone like me with experience of Court of Protection hearings concerning life-sustaining treatment and knowledge of the Royal College of Physicians’ National Clinical Guidelines on Prolonged Disorders of Consciousness following Sudden Onset Brain Injury, it is utterly bizarre to learn that, in arriving at a view about the (in)applicability of P’s ADRT, the Trust did not obtain appropriate medical evidence concerning his diagnosis and prognosis.
As recently as last month (April 2025) shortly before this hearing, the Trust’s solicitor, Natasha Sond, went so far as to query the relevance of diagnosis and prognosis and resisted disclosure of medical records. She explained that “the Trust’s view is that [P] has emerged from PDOC and that although the Trust’s statement is not provided by a clinician, the clinical assessment is “well noted within the Trust records” and in any event not the issue before the court” (quoted from the position statement for P’s partner). It should go without saying that the fact that something is in Trust records doesn’t make it true – especially when it is a diagnosis provided by a person (or MDT) not qualified to make that diagnosis.
But again, I’ve seen failure to get a properly qualified clinician to assess PDoC patients many times before (both in relation to ADRTs and in relation to best interests decision making) – partly I think because there is limited knowledge about the need for a PDoC-qualified expert or how to locate and fund one. But without expert assessment from a qualified clinician how could anyone claim to know whether or not there was a realistic possibility of a patient recovering to a “quality of life” that they would consider acceptable?
I’ve also encountered situations where clinicians and others have taken it upon themselves to argue that the patient’s version of “quality of life” (either as defined in an ADRT or Advance Statement, or as reported by family and friends) is the “wrong” definition (even “unethical”) because it isn’t their definition. And of course, it’s common for people who raise the possibility of withdrawing or withholding life-sustaining treatment to be viewed with suspicion (as was my family when we asked for my sister Polly’s treatment to be stopped).
Those of us involved in the Coma and Disorders of Consciousness Research Centre at Cardiff University have published analyses of some of these cases (the ones that made it to court) and pointed out years ago that “repeated calls for lessons to be learned […] seem to have produced only very slow change”[viii].
Postscript (16th May 2025)
On receipt of the approved Order from Mr Justice Poole dated 14th May 2025, I have gained some clarity about what the parties agree about and how the case is likely to play out at the next hearing.
The parties agree that:
- there is no basis to dispute that P had capacity, within the meaning of MCA 2005, to make the ADRT on 3rd April 2024
- if P were to continue to require 24-hour care and were unlikely to regain the ability to make decisions for himself, this is a scenario that would be covered by the ADRT
- they will review their positions on the applicability of the ADRT upon receipt of the expert report of Professor Wade and will set out any points relating to its interpretation in their skeleton arguments in light of Professor Wade’s opinion concerning (1) the likely outcome for P and (2) the ‘best case scenario’ for P.
P’s mother reserves her position on whether or not she will seek to cross examine the treating clinician (I think this is who the person named in the order is?) following review of the MDT minutes and the report of Professor Wade.
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 600 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and also on X (@KitzingerCelia) and Bluesky @kitzingercelia.bsky.social) Full disclosure in relation to ‘conflict of interests’: In addition to having family experience with a sister in a prolonged disorder or consciousness (and her own ADRT, as discussed in the previous blog post about this case), she was a member of the core editorial group that wrote the Royal College of Physicians’ Guidance on Prolonged Disorders of Consciousness after Sudden Brain Injury and a member of the British Medical Association working party that produced the guidance on clinically assisted nutrition and hydration for adults who lack capacity. She has also (with her colleague and sister Professor Jenny Kitzinger) produced an online “healthtalk’ resource for families and training resources for healthcare professionals working with people in vegetative and minimally conscious states.
Notes
[i] Only one witness signature is required by law (s. 25(6) MCA 2005) and there is no requirement that the witness read or discuss its contents.
[ii] According to the Official Solicitor: “The regrettable procedural history of this case means that it is not a serious medical treatment case whereby the Official Solicitor is able to offer to meet the fees of an expert from her budget. The security for her costs comes from [P’s] legal aid certificate. Realistically, it would seem unlikely that an expert in neurorehabilitation will accept instruction on legal aid rates. The process of security the authority of the legal aid agency is likely to prolong matters and there is every risk that the court will have to revisit the President’s recent decision in Re K and Re S (Legal Aid: Experts’ Fees) [2025] EWFC100 and apply it to the Court of Protection”. I don’t know enough to make sense of this, but include it as a footnote for those who do, and might find this of interest.
[iii] I am grateful to parties who shared their position statements with me – they are invaluable in supporting my understanding of the case and maximising accuracy of reporting. I requested but was refused access to the position statement prepared by Eliza Sharron on behalf of the mother (and P’s birth family more broadly). I’m told that the birth family find the presence of observers and the publicity associated with this case distressing and I have taken this into account in my blog posts.
[iv] Material purporting to be directly quoted from what was said in court is based on my contemporaneous (touch-typed) notes and is as accurate as I can make it, but unlikely to be 100% verbatim.
[v] In my previous blog post I wrote: “I noticed that none of the parties (nor the judge) mentioned whether or not the document complies with s.25(5)(a) of the Act (“An advance decision is not applicable to life-sustaining treatment unless […] 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”). The Trust says in its position statement for this hearing that it does.
[vi] Given the circumstances of this case, that’s correct in my view. But cases involving ADRTs should not automatically require a court hearing where there is no controversy or uncertainty about the validity or applicability of treatment refusals. I certainly hope to avoid a court hearing about my own.
[vii] The President of the Family Division also hears Court of Protection cases and this case came before him on 20th November 2024 (see my earlier blog post for more information about what happened: “Determining the legal status of a living will: Personal reflections on a case before Poole J”)
[viii] Kitzinger, J and Kitzinger C. 2017. “Why futile and unwanted life-prolonging treatment continues for some patients in permanent vegetative states (and what to do about it): Case study, context and policy recommendations” International Journal of Mental Health and Capacity Law. See also Kitzinger, J & Kitzinger, C (2016) Causes and Consequences of Delays in Treatment-Withdrawal from PVS Patients: A Case Study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32, Journal of Medical Ethics, 43:459-468. Kitzinger, J 2021. “Burdensome and futile” treatment and dignity compromised: Poor practice at a leading UK hospital.
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