By Celia Kitzinger, 5th 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)
This case (COP 20006397), heard by Mr Justice Poole sitting at the Royal Courts of Justice, centres around the authenticity, validity and applicability of a so-called ‘Living Will’ – specifically, those parts of it that appear to constitute a potential Advance Decision to Refuse Medical Treatment (ADRT).
The hearing I observed on 26th March 2025 was a short directions hearing. The case is back before the court on 12th May 2025 for a pre-trial hearing. It’s listed to be heard in full on 22nd and 23rd May 2025, in person, at the Royal Courts of Justice.
In this blog post I give a short account of what, in law, constitutes a valid ‘Advance Decision to Refuse Treatment’ (ADRT) then sketch out the background to the case so that others can follow subsequent hearings and blogs about them. Throughout, and especially in the last section, I reflect on this case from my own perspective, based on my personal and family experience, my volunteer work for the charity Advance Decisions Assistance[1], and my academic and policy-related research[2].
What is an advance decision to refuse treatment (and why do I have one)?
The right to refuse medical treatments, including life-sustaining treatments, is long-established for people with the capacity to make a contemporaneous decision (e.g. Re T (Adult: Refusal of Treatment) [1993] Fam 95; Ms B v An NHS Hospital Trust [2002] EWHC 429 (Fam); Re C [2015] EWCOP 80).
The capacitous person’s right to refuse medical treatment was recently reinforced by Mr Justice Hayden who said: “It is important to emphasise … that there is no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so, in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity” (§9 NHS Heartlands ICB v JH [2023] EWCOP 3)
An Advance Decision extends the right to refuse life-saving (and other) treatments into the future when a situation could arise where capacity to do so has been lost (e.g. due to brain injury or dementia). A very basic Advance Decision might state, for example, “I refuse a feeding tube and all other life-prolonging treatments if I am diagnosed by two appropriately qualified doctors as being in a prolonged disorder of consciousness”. This would be a valid and legally binding Advance Decision in England and Wales if it had been made by someone with the requisite capacity at the time they made it, and if it was signed, witnessed and included a statement to the effect that ‘this decision is to apply even if my life is shortened as a result’. The statutory requirements for an Advance Decision are set out in ss. 24-26 of the Mental Capacity Act 2005.
I first made my own Advance Decision to refuse life-sustaining medical treatment in 2009, and I’ve had one ever since, though I regularly update and revise it in a – possibly doomed – attempt to protect my rights.
I made an ADRT because of what doctors did to my sister, Polly Kitzinger, who sustained devastating brain injuries in a car crash, resulting initially in a prolonged disorder of consciousness (see: “Doctors wouldn’t let my sister die”). Doctors said early on that it was highly unlikely that Polly would ever leave 24/7 care or be able to make significant choices about her own life ever again. Her family was unanimous that Polly, who we’d known for almost half a century, wouldn’t want life-sustaining treatment given that prognosis. Respecting her wishes in the days and weeks after the car crash would have meant things like no CPR, no ventilation, no tracheostomy (or subsequently deflating it and discontinuing suctioning apart from comfort care) – all accompanied by no antibiotics for life-threatening infections, of which she was at very high risk during these early months. Later, once she was breathing on her own, clearing her own secretions and mostly free of severe chest infections, it would have meant withdrawing the feeding tube, or not replacing it when it became dislodged. But Polly had not made an Advance Decision to refuse treatment, and doctors believed that continuing treatment was in her ‘best interests’. We disagreed, but treatment continued. By two years after the car crash, Polly no longer needed the feeding tube: she was able to swallow pureed food spooned into her mouth, which is ‘basic care’ not ‘medical treatment’ and cannot lawfully be withdrawn. Although ceilings of treatment were eventually put in place in her best interests (a ‘do not attempt resuscitation’ notice, and no screening or treatment for life-threatening infections or illnesses), she is no longer receiving any ongoing life-sustaining treatment that could be withdrawn, and she’s robust enough to survive illnesses without antibiotics (and COVID-19 without vaccination). Sixteen years later, Polly is still alive, now fully conscious but still profoundly brain injured, in 24/7 care, with a quality of life we are all certain she would have refused in advance if she’d been able. She missed the ‘window of opportunity’ for death after severe brain injury[3].
My ADRT is an attempt to ensure that nothing like that happens to me. It states – starkly – that I refuse all life-sustaining medical interventions under all circumstances if I am not able to consent to them. I acknowledge, of course, that’s a very draconian Advance Decision and not one that most people would want for themselves. My greatest fear, though, is not that I will die prematurely as a result, but that my ADRT will not be honoured and that I will be forced to undergo treatments I don’t want and that my life will be extended by medical interventions against my will. What I’ve heard of this case so far has absolutely reinforced that fear, and (as I often do after observing end-of-life cases in the Court of Protection) I’ve already reread my own ADRT with a view to revising it (again) so as to protect myself as far as possible against some of the challenges I’ve heard raised in this case.
So, that’s the very personal perspective from which this blog post is written.
For me as someone who has made my own Advance Decision to Refuse Treatment, supported many other people to make ADRTs (via a charity) and carried out academic and policy-related research in this area, there are some deeply alarming aspects to this case. They include:
- A document appearing, on the face of it, to contain some form of Advance Decision to Refuse Treatment did not make its way to doctors treating the patient for more than three months after he suffered a life-changing hypoxic brain injury[4]. By that time of course P had already been provided with a great many life-sustaining interventions which he may have lawfully refused.
- On receipt of the ‘Living Will’, the Trust seems swiftly to have reached a decision that its treatment refusals were not legally binding. It did so without seeking direction from the court – despite the fact that the court has now listed a two-day hearing to make a determination as to whether these treatment refusals are or are not legally binding, which strongly suggests that there is an arguable case that they are legally binding.
- At a hearing four months after becoming aware of the ‘Living Will’, the Trust asked the court to make decisions about contact between P and his birth family (the ‘Living Will’ stated that he did not want contact with some members of his family). There was also an application for deputyship from P’s partner. The Trust did not ask the judge to make a determination about the treatment refusals it contained, despite the fact that P was receiving medical treatment that seems, on the face of it, to be contrary to (what may be) legally binding refusals.
- In the face of dispute with P’s partner concerning validity of the ADRT, the Trust left it to P’s partner as a litigant in person to make the application to the court for a judge to determine the issue.
- A final decision about the status of P’s treatment refusals will not be made – at the earliest – until towards the end of May 2025, and maybe much later than that if the family pursues their claim that the document is fraudulent or the result of undue influence. The earliest possible date, in May 2025, is more than a year after P sustained his brain injury, and nearly 9 months after the Trust first became aware of the ‘Living Will’. During that time, he’s received multiple invasive and ongoing medical treatments which it is possible that he will be found to have lawfully refused.
The truly awful thing about this story, as I understand it so far, it that it doesn’t surprise me in the least. Regardless of whether or not the judge finds this ‘Living Will’ to include an authentic, valid, and applicable ADRT, the way the Trust (in particular) has dealt with this document gives me a horrible sense of déjà vu. It reflects and reinforces my own experience, and that of many others who seek to exercise their right to refuse life-sustaining medical treatments.
Background to the case
The person at the centre of this case (“P”), a man in his forties, suffered a severe hypoxic brain injury on 5th May 2024. For some months after his injury, he was in a prolonged disorder of consciousness. He’s now ‘emerged’, with life-changing brain damage. (CORRECTION 12 May 2025: This was what the court was told at the hearing on 26th March 2025 and so I reported it as fact. It now transpires from today’s hearing (12 May 2025) that the Trust did not have any medical evidence from a suitably qualified clinician as to P’s diagnosis and prognosis. The placement to which P has been moved state that P say that they have seen no evidence of P having emerged from a prolonged disorder of consciousness and he’s recorded there as being in a “minimally conscious state”. The court has now appointed an independent expert to assess P and prove an opinion on diagnosis and prognosis). His physical condition has stabilised: it was said that the only life-sustaining treatment he currently receives is clinically assisted nutrition and hydration (CANH) via a PEG tube[5]. At the time of the hearing, he was about to be discharged to a placement where he would receive intensive rehabilitation, so there is a possibility of some further ‘improvement’ in his mental condition (although it is also reported that he has become more ‘agitated’ with increasing awareness). Currently, he has “fluctuating levels of awareness”. He cannot consistently communicate a ‘yes/no’ response. He’s dependent on carers for movement, continence care, and nutrition. Nobody disputes that he lacks capacity to make his own decisions about residence, care, contact with others, and medical treatment.
Usually, in this situation, all relevant decisions would be made in P’s best interests. As P has not appointed anyone with Lasting Power of Attorney[6] to make ‘best interests’ decisions for him, it is the professionals working for the Trust (and now the ICB) who have primary responsibility for ensuring that all decisions made are in his best interests.
A valid and applicable Advance Decision to Refuse Treatment stands apart from best interests decision-making: it represents the person’s own decisions and its treatment refusals must be complied with, whether or not others consider them to be in the person’s best interests. If the ‘Living Will’ made known to the Trust in August 2024, three months or so after P’s brain injury, does incorporate a valid and applicable ADRT, those decisions made by P in advance of losing capacity are lawfully binding.
I haven’t seen the “Living Will”, but snippets were read out in court and paraphrased or quoted in the parties’ position statements. Those parts relevant to treatment refusal include:
- “5.1 I refuse any medical treatment in the event I have, for example, dementia or a bad brain injury causing life-long, life-changing disabilities” (section of the ‘Living Will’ read out by the judge)
- The “general thrust” is that “P would not wish to receive certain life-sustaining treatments in circumstances where he was incapacitated and disabled” (Official Solicitor)
- “The Living Will appears to suggest [P] would not wish his ‘life [to be] artificially prolonged’” (ICB)
- “The main treatment contrary to the ‘Living Will’ is clinically assisted nutrition and hydration via the PEG feed (Trust).
It’s clear from the various position statements I’ve received from the parties that the “Living Will” has been the subject of a great deal of legal discussion and debate since the Trust learned of its existence in August 2024, but this seems to have focussed on contact arrangements and information-sharing with P’s family – which is part of the “Living Will” as a whole, but not part of the purported ADRT incorporated within it.
The ‘Living Will’ states that P would not wish to have contact with certain members of his birth family and that he doesn’t want information about him to be passed on to them. There is a suggestion (challenged by the birth family) that P was estranged from them. The judge mentioned a best interests meeting on 18th September 2024 attended by family members (including a sister and both parents) as well as P’s partner and nursing staff, at which there were “extensive and substantial disputes” about P’s wishes.
At what I think was the first attended hearing, on 20th November 2024, the judge who heard the case (the President of the Court of Protection, Sir Andrew McFarlane), dealt with the issues concerning the family[7], and with the application for deputyship from P’s partner. But the judge was NOT asked to make any determination about the (purported) refusal of life-sustaining treatment, and I understand that the existence of the ‘Living Will’ was not brought to his attention. I find this extraordinary, and I think the Official Solicitor does too:
“The Official Solicitor repeats her submission that the Trust ought to have alerted the President to the presence of the ‘living will’ and the fact it contained what, appears on the face of it, to be some form of advance decision. The Trust did not do so. […] [T]he Official Solicitor does not seek any declaration as to the conduct of the Trust. Whilst the Trust’s approach is concerning in light of section 26(5) MCA 2005, there is no value in this forum reviewing their approach, save to indicate in any judgment that this type of approach ought not to be repeated in future cases. The Official Solicitor is clear, at the very least, the Trust should have told the President when this matter was before him.” (See footnote added 6th May and revised 10th May 2025)
At the beginning of this hearing, counsel on behalf of P via the Official Solicitor (Ian Brownhill) summarised the current position like this: “The legal status of the Advance Decision contained within the ‘Living Will’ is the most pressing matter that needs to be grappled with. Does it meet the formalities required, and is it applicable to the treatment he’s receiving now?”
The position of the parties
P’s partner
The application to court was made by P’s partner as a litigant in person. Her position is that the ‘Living Will’ incorporates a valid and applicable Advance Decision to Refuse Treatment under ss. 24-26 of the Mental Capacity Act 2005. She is concerned that the Trust (and now the ICB?) is not complying with what she considers to be a binding document – at least as far as treatment refusal is concerned. She says that P’s ADRT has been “disregarded . .. with treatment continuing in a manner contrary to his clearly expressed wishes”. She says that continuing life-sustaining treatment is contrary to P’s lawfully-made decision. The feeding tube should be withdrawn to ensure that P’s “rights, wishes, and autonomy are respected”.
The Trust: Midlands NHS Partnership Foundation Trust
The Trust is the second respondent, represented by Natasha Sond. I am not wholly clear about the basis on which the Trust takes the position it does, or what evidence they have to support their position, and I did not receive a position statement from them, which would have helped my understanding.
From what Ms Sond said in court, their position seems to be that the decisions to refuse treatment are neither valid nor applicable to P’s current situation.
On validity, she said that the decisions 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, or cite any case law in her oral submission.
There are two judgments in other cases relating to the sorts of things that a person might do that would invalidate their own advance decision – short of explicitly withdrawing it when they still have capacity [s.25(2)(a) MCA 2025] or subsequently conferring authority on an attorney to give or refuse consent to the treatment to which the advance decision relates [s.25(2)(b) MCA 2005). Both judgments relate to urgent hearings about blood transfusions.
- In HE v A Hospitals NHS Trust [2003] 2 FLR 408 (heard by Munby J), a young woman was at death’s door and needed a blood transfusion, but she had signed a properly made advance decision (in accordance with case law prior to the implementation of the Mental Capacity Act 2005) refusing blood products. She had used a pre-printed forms provided by the Church of which she was then a member, stating “being one of Jehovah’s Witnesses with firm religious convictions [I] have resolutely decided to obey the Bible command “Keep abstaining … from blood” (Acts 15: 28, 29)”. She was unconscious and so unable to make any wishes or feelings known at the time of the court hearing, and obviously lacked capacity to make her own decision. In court, her father gave evidence of her recent rejection of her former faith: she was engaged to be married to a Muslim man, had confirmed that she would follow his faith, and had not attended the Witnesses’ meetings or services for several months. The judge decided “Since it is quite clear that the Advance Directive was founded entirely on AE’s faith as a Jehovah’s Witness – that is made clear beyond argument by the very terms of the Advance Directive itself – it seems to me that it cannot have survived her deliberate, implemented, decision to abandon that faith and to revert to being a Muslim”. The judge found that “there is simply no clear and convincing proof that the Advance Directive is still valid and applicable. The father’s evidence having raised doubts – real doubts, not fanciful doubts or mere speculations – those doubts must be resolved in favour of the preservation of life”. He ordered that “she must have the blood transfusions which, but for the Advance Directive, her doctors would already have given her”.
- In a case heard by Poole J (Re PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52) an 80-year old Jehovah’s Witness with dementia was discovered to have made an ADRT twenty years earlier, refusing blood or blood products, even if her life were in danger. It was properly made, compliant with – albeit pre-dating – the MCA 2005, and clearly applicable to her current circumstances: she had severe anaemia following internal bleeding due to an ulcerated gastric tumour and was at risk of death. If the ADRT was valid, then it was a binding decision. It was noted that in late 2020, she had made a health and welfare power of attorney in favour of her four children, without including any preferences or instructions to the attorneys, and without telling them that she had made an advance decision. Two of her daughters gave evidence in court that their mother had been pressurised into making her advance decision because their mother simply went along with what their (now deceased) father, a committed Jehovah’s Witness, wanted: “she is a “person who likes to please” and she wanted to be a “good wife”. They were convinced that their mother wanted to stay alive, and would choose to have a blood transfusion if she were able to give a considered and clear view. And indeed a few days before the hearing, the patient had in fact expressed the (albeit incapacitous) wish to have a blood transfusion if she would die without it (although she was inconsistent on this matter and had also expressed the contrary view). In that case, the judge decided that “if she had capacity, she would not now adhere, at least not with commitment and consistency, to the tenets of Jehovah’s Witnesses regarding blood, as she appears to have done two decades ago when she made her advance decision. Her wish to live is stronger than any residual beliefs that she should not receive blood or blood products.” He found it in her best interests to have a blood transfusion.
On applicability, the Trust position was that the ‘Living Will’ says that P “wants no life-sustaining treatment if he was to have no quality of life – rather than no life whatsoever. The degree of recovery that can be achieved cannot be determined at the point of brain injury – it takes a year, potentially three years, and some quality of life is very possible. Whether or not he will have quality of life is yet to be seen”.
P’s mother
The patient’s mother is the fourth respondent, represented by Eliza Sharron (and I believe that other family members are seeking permission to join as parties, all with the same position as P’s mother). Their position is that the ‘Living Will’ is either fraudulent (a forgery) or the result of undue influence from P’s partner. Counsel also referred to evidence that “P was suffering from anxiety and mental health issues at the time these instruments were purportedly executed”: I think this was raised as indicating the possibility that P may have lacked capacity to make the decisions about life-sustaining treatment at the time. There was some discussion about a handwriting expert to determine whether in fact it was P who had signed the ‘Living Will’. The two witnesses to P’s signature are to be contacted by the Official Solicitor.
Pressed by the judge to identify issues of validity “leaving aside undue influence and whether that’s his signature”, counsel for P’s mother said there were concerns about “whether the terminology is sufficiently tight to be enforceable”, and gave an example: “He mentioned he would not want to have CANH for the rest of his life […] but it may not be the case that he needs it for the rest of his life – just for a period of time as part of his rehabilitation”.
The ICB: NHS Staffordshire and Stoke-on-Trent Integrated Care Board
The ICB (represented by Nicola Kohn) “recognizes that the status and effect of the Living Will requires clarification as soon as possible” and seems not to take any particular position on the matter of whether or not the treatment refusals are legally binding.
Official Solicitor
Ian Brownhill is instructed by P’s litigation friend, the Official Solicitor, whose views on the Trust’s failure to inform the judge about the ‘Living Will’ at previous hearings are quoted above. The OS’s position now is that “the status of the ‘living will’ needs to be definitively determined’ so that all parties, and future treating Trusts, and the ICB, have clarity as to whether it contains a valid advance decision or not. The OS recommends a ‘staged’ approach. First the court should deal with the authenticity of the ‘Living Will’, gathering evidence as to the context in which it was made, and then determining what effect it should have moving forward. If it’s valid, the OS is “unlikely to advance a position that contradicts that document unless [P’s] condition substantially improves and his ascertainable wishes and feelings have changed”.
What next?
In terms of the timing of the next hearing, the parties seemed to take a rather relaxed approach. Only P’s partner asked for a hearing “at the earliest possible opportunity, to ensure that [P’s] lawful decisions and personal dignity are upheld without further delay”. This was clearly also the judge’s view and he arranged for the case to return “as soon as it can be heard by the court”.
The ICB initially suggested October 2025 to “give [P] an opportunity to develop any rehabilitation potential he may have and the parties an opportunity to take stock of their respective positions”. That would mean another 6 or 7 months during which P would continue to receive medical treatment he has quite possibly lawfully refused, and during which, indeed, he might cease to ‘need’ CANH and thus miss the window of opportunity to avoid having to go on living with “a bad brain injury causing life-long, life-changing disabilities” – something he seemed to reject in his ‘Living Will’.
Counsel for P’s mother suggested first a hearing for the judge to decide whether the advance decision is compliant with the legal formalities required by ss. 25 and 26 of the Mental Capacity Act 2005, and then if (and only if) it is so compliant, a second ‘fact-finding’ hearing to determine whether the document had been created as a result of undue influence or fraud. The judge saw the “logic” of that, “but the difficulty is that he suffered his brain injury in May last year, the Living Will has been known about since August last year, and there is ongoing treatment that on the face of it will be covered by the Living Will. There’s some urgency to it.” In response to the suggestion that the ‘fact finding’ hearing would need to be scheduled over several days, the judge said, “I can see this taking 5 days potentially, but without tight control by the court that means it would probably be September or October before it was resolved. But how can that be appropriate to the case?”
I think the judge eventually decided on a hearing to determine the validity and applicability of the advance decision “on the assumption that it’s an authentic document”, acknowledging that “it’s regrettable that if I find it is [valid and applicable], there may remain issues as to whether the signature is fraudulent or there has been undue influence”. It’s “regrettable” because it means further delay.
I also noted that the judge enquired, on three separate occasions in this short hearing, as to whether there was “any prospect that [P] might regain capacity” to make his own medical decisions, especially as he is about to move to a rehabilitation placement. The responses on all three occasions were equivocal, but I got the impression that nobody thought this was a strong possibility.
Reflections
I know very little about the person at the centre of this case, or why he (apparently) made a ‘Living Will’ just one month before his brain injury. I know nothing about his relationship with his partner or with his birth family, and very little about his current medical condition. I can’t discount the possibility that the ‘Living Will’ is a forgery or the outcome of coercive control or undue influence from his partner, or that it simply doesn’t apply to the situation P is now in. Perhaps, like many of the purported advance decisions I’ve seen, it’s poorly drafted and doesn’t meet the requirements of the Mental Capacity Act 2005. For example, 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”). Perhaps the document isn’t authentic or valid or applicable. Perhaps, even if it is, the delay in implementing it will mean that he’ll recover sufficiently to enjoy whatever ‘quality of life’ he can experience post-brain-injury (with challenging implications for an otherwise valid and applicable ADRT). Perhaps he’ll even regain capacity and be able to make his own medical decisions in future. Maybe everything will turn out for the best in the end.
But listening to this hearing, my overall impression of what is going on leaves me with a terrible sense of déjà vu. It reflects my experience with ADRTs over the years – with my own ADRT, and in relation to those of others, both in my family and people I’ve supported via the charity. In my view, the fundamental problem lies in the fact that citizen-led (as opposed to clinician-led) advance care planning is deeply anomalous in the NHS context.
Clinician-led advance care planning is the norm. The policies and practices of treatment limitation originate from, and are organised in relation to, a perspective of benevolent medical paternalism whereby a clinician (or clinical team) makes an informed expert decision that initiating or continuing some treatments (e.g. CPR, CANH) is medically futile, or that their harms outweigh the benefits. In theory, these decisions depend on “difficult conversations” about the sick or dying patient’s best interests, with the patient and/or their family members – often in the face of what doctors assume will be their desperate insistence that the doctor should “do everything” possible to sustain life[8]. The research literature is awash with evidence that these conversations often do not go well – the “taboo” on talk about death and dying, and “poor communication skills” from practitioners are often held responsible. Training is routinely advised: how to ask open-ended question, display empathy, provide reflective feedback, and manage patient/family distress and ‘magical thinking’. There are numerous “guidelines”, and sample “scripts” to help practitioners with “communication techniques”: “Have you talked about the kinds of treatments you would want if you suddenly became very ill?” or ““I need your help to make sure that we give you treatments you would want to receive. Some patients would want treatment continued or started. Others would not. Do you know what you would like to do?”[9] The intended outcome of these “difficult conversations” is to improve patient care and manage risks of medical culpability: this is typically accomplished via completion of an NHS form (e.g. DNACPR, Treatment Escalation Plans, ReSPECT) which is then placed on the patient’s records as evidence that that the conversation has been had, patient “wishes” and “preferences” have been recorded, and the patient has been informed of treatment-limitation recommendations in accordance with legal requirements.
Citizen-led advance care planning sits very uncomfortably within this framework. My Advance Decision to Refuse Treatment is an exercise of my legal right to autonomy over my own body – and it feels like bucking the system. Health care professionals are taken aback and seem very ill-prepared when it’s me, not them, who initiates “the difficult conversation”, and me, not them, who decides on treatment limitation. Perhaps it’s because the “communication skills” packages they’ve been exposed to don’t cover that eventuality. Perhaps it’s because they perceive me as the ‘wrong’ kind of patient for these conversations – I don’t have a life-limiting illness or any chronic condition particularly likely to result in a sudden life-threatening episode. I repeatedly feel that I’m experienced as a difficult patient’,making intractable demands on a busy NHS service that is ill-equipped to record my decisions (especially DNACPR) in any way likely, in practice, to influence my treatment in a medical emergency. The professionals I’ve spoken to in my role as a service-user seem to be well outside their comfort zone. It takes considerable emotional labour on my part to avoid alienating or upsetting them, and to get them on board with a collaborative rather than confrontational approach to my treatment choices. I routinely find myself needing to mollify and reassure, finding ways of cajoling them into respecting my legal rights, while simultaneously trying to correct their confidently-asserted misrepresentations of the legal framework. I resent the need to negotiate these professional sensitivities in circumstances where I’m ill or anxious about upcoming surgery. I recently had a meniscus repair under general anaesthesia and found health care professionals evasive and uncomfortable with discussing my refusal of cardio-pulmonary resuscitation (“oh it won’t come to that!”) and baffled by the role of my wife not as ‘next of kin’ but rather as my attorney for health and welfare. My ADRT does not ‘fit’ with any NHS proforma. My carefully-crafted ADRT was ignored on hospital admission in favour of the DNACPR form completed by my GP (which simply says that I’m not for CPR because I have an ADRT refusing it!) – because that’s the form they’re used to, the one they understand, the one with the red border. Clinicians have even told me (wrongly, of course) that my ADRT is not legally binding because it’s not on the “proper” NHS form, because it’s not ‘signed off’ by a doctor, because my treatment refusal is too broad, or because the decisions I’ve made are not in my own best interests. One senior intensivist at a professional seminar on ADRTs announced that if I were to collapse in front of him during the course of the seminar, he would not hesitate to resuscitate me in my best interests, even knowing my decision to refuse resuscitation. (This led to a lively discussion about how other participants – some of them lawyers and ethicists – might respond to his efforts.) Professionals who should know better have equated my ADRT (especially as it includes refusal of a feeding tube) with ‘euthanasia’ or ‘assisted dying’. Some have doubted its legality and questioned its moral status.
I’m in the privileged position of having been able to share my ADRT with some very senior lawyers in the Court of Protection. It’s legally as watertight as I can make it. But having the law on my side is not enough – especially as medical professionals either don’t understand the law, or seem prepared to disregard it. For one thing, I don’t want to have to wait (like the P in this case before Poole J) for months or years after losing capacity, stuck in a hospital or care home, for a court to make a decision about whether my ADRT is legally binding.
The concerns raised about the ADRT in this case are very familiar to me. For example:
- Many ADRTs are unavailable to treating clinicians. It’s not clear why treating clinicians in this case didn’t have access to the patient’s ADRT for the first three months. But it’s not unusual – in part because there is no central repository (as there is for LPAs) from which clinicians can retrieve them, but also because family and friends may not know about them, or because hospitals lose them. Eighty-one-year-old Brenda Grant was PEG-fed for 22 months after a devastating stroke contrary to her advance decision to refuse treatment because the hospital misplaced her ADRT: she was subsequently awarded an out-of-court payout of £45,000). Eighty-five year old former nurse, Jillian Rushton, was also PEG-fed contrary to her advance decision for 3 years in a prolonged disorder of consciousness because the hospital did not request the ADRT from her GP, but relied on a summary of its contents conveyed over the phone – which turned out to be incorrect, NHS Cumbria CCG v Rushton [2018] EWCOP 41). Neither of these patients had informed their adult children about the existence of their ADRTs: that’s not uncommon in my experience – people can’t face “upsetting” family members by talking about their own death, especially when they suspect there may be family opposition to their plans. All my family is of course fully aware of my ADRT and its contents and my wife and sister – who are also my LPAs – are under instruction to get it to clinicians immediately, and then to the Court of Protection in the event that my decisions are not implemented right away.
- Many ADRTs are poorly drafted. I haven’t seen the purported ADRT in this case, but I know from looking at others that many do not comply with the legal requirements in the Mental Capacity Act 2005 for a valid ADRT refusing life-sustaining treatment. I’ve seen some where signatures are not witnessed (they are witnessed in this case) and several that omit the ‘magic sentence’ to the effect that the person’s treatment refusals are to apply to that treatment even if life is at risk (s. 25(5)(a) MCA 2025) (I don’t know whether or not that’s present in this case). Documents are often internally contradictory, and muddle together legally-binding treatment-refusal decisions with other decisions (e.g. about place of care, or who should visit) as seems to have been done in this case. ADRTs are likely to be more readily recognised as legally binding when they are stand-alone documents, concisely expressed, separated from ‘wishes and feelings’. It helps to title them “Advance Decision” (the statutory term) and to explicitly reference the Mental Capacity Act 2005. Advance Statements (which are not legally binding but which have legal standing (s.4(6)(a) MCA 2005)) can be in a separate document for use alongside ADRTs, addressing wishes and preferences more broadly (rather than binding decisions about treatment refusals). Amongst other things, my Advance Statement (attached to my ADRT) explains why I have made an ADRT. Here’s an extract.

- Capacity to make an ADRT. Counsel for P’s mother said that P was suffering from anxiety and mental health issues at the time the document was made. I was, too, when I made my own first ADRT in the aftermath of Polly’s forced treatment: I was off work for six months diagnosed with clinical depression. Diagnosis with a mental disorder or impairment does not automatically mean that someone lacks capacity to make an ADRT, and there is an argument to be made that the statutory ‘presumption of capacity’ should apply. But rather than risk my ADRT being later dismissed by clinicians, or by the court, on the grounds that I lacked capacity to make it at the time, I sought out a capacity assessment and attached it, along with my Advance Statement, to my ADRT. This course of action was confirmed as appropriate in a subsequent court judgment, which stated that where there are reasons to consider that the person may lack capacity to make the advance decision, a “full, reasoned and contemporaneous assessment to make such a momentous decision” should be undertaken and recorded so as to eliminate the possibility of later doubt (Jackson, J §65 A Local Authority v E [2012] EWHC 1639 (COP)). I have since recommended that course of action to many others (most often to people with dementia diagnoses).
- Dealing with legal ‘safeguards’. Listening to this hearing raised several ‘red flags’ for me in terms of my own treatment refusals. I heard the judge ask, three times, whether P might regain capacity to make his own medical decisions. Not only does that seem unlikely in this case, but it’s also something I don’t want considered in my own case. My ADRT already states that “I do not wish anyone to administer life-sustaining treatments… in the hope that I might subsequently regain sufficient capacity to make a decision for myself”. This is because continuing treatment in the hope that I might regain capacity would require me to go through the painful and possibly protracted process of recovery and rehabilitation – quite possibly without regaining the requisite capacity in the end. And it could then turn out that (as happened to my sister Polly), the medico-legal ‘window of opportunity’ for death had closed, and I’d be trapped with a quality of life I would not have wanted. I also note that counsel for the Official Solicitor says that if P’s ADRT is found to be valid, then “the Official Solicitor is unlikely to advance a position that contradicts that document unless [P’s] condition substantially improves and his ascertainable wishes and feelings have changed” (my emphasis). I know people have different perspectives on this matter – and it’s common for people to tell me that they don’t want to make an ADRT, because they don’t know how they would feel as the incapacitous person they might become, or what they might want in that situation. Obviously, I also don’t know how I’d feel with dementia or brain damage that caused me to be unable to make my own medical decisions: I know some people are content or even happy to be alive in that situation, and I can’t rule out the possibility that I’d be one of them. But it remains my hope that my ADRT will prevent me from ever being in this situation. It had not initially occurred to me that the effect of s. 25(2) MCA 2005, which provides that the ADRT will not be valid if the maker has done anything clearly inconsistent with its remaining her fixed decision, includes actions done AFTER losing capacity. I want my capacitous decisions to override my non-capacitous wishes and feelings. Unfortunately for me, the law seems not to be on my side about this. I am in the process of drafting my ‘wishes and feelings’ in relation to both of these points (treating me in the hope I regain capacity; allowing my non-capacitous wishes to invalidate my ADRT) for inclusion in my Advance Statement’ in the hope that – even though they cannot bind the court – they will be used in any ‘best interests’ decision-making about me. I’m also trying to forestall any possible argument that my ADRT was written under coercion or undue influence (though it’s been pointed out that my strongest safeguard in that respect is my public profile as someone who advocates for ADRTs and publicises my own advance decisions and the reasons for them)..
- Delay and the ‘window of opportunity’ for death. This case has been characterised by delay. Delay in producing the ADRT. Delay in asking the court to rule on its authenticity, validity and applicability. And now inevitable delay (despite the judicial sense of urgency) caused by the need to gather evidence and prepare for a next hearing. Delay has even been lauded as offering P the opportunity to “develop any rehabilitation potential he may have” (ICB). Waiting to see how much someone will recover after severe sudden-onset brain injury, hoping that they might regain what they could experience as ‘quality of life’, and even that they might become able to make medical decisions for themselves, can all sound fine in theory. In practice, it can mean a person enduring the pain and suffering of intensive care and rehabilitation for an uncertain outcome – something they might not choose to do. For myself, in my late sixties, there are diminishing returns: I’m ready to cut my losses and choose to forgo the opportunity of longer life, especially one without capacity and without an exit route. My sister Polly’s additional 16 years of life (so far) is certainly not what I want for myself. That is why I have simply refused all life-sustaining medical treatment if I cannot consent to it, in the hope that my life will be shortened as a result.
This case has already raised disturbing issues about how ‘Living Wills’ are handled by clinicians and Trusts. As it goes through court, it will raise important issues about the authenticity, validity and applicability of Advance Decisions to Refuse Treatment. All of us who care about making our own decisions at the end of life will benefit from understanding what the judge decides and why.
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)
FOOTNOTE ADDED 6th May 2025 and REVISED 10th May 2025
On 6th May, I received information from Ms Natasha Sond (representing the Trust) that the Official Solicitor was not accurate on this point and that “the Trust concerns about the reliability of the living will was flagged to Sir Andrew McFarlane by myself on behalf of the Trust at the hearing on the 20th November 2024, with the post hearing sealed order making reference to the living will in the recitals twice. One recital specifically references the Trust concern about the reliability of the living will which was raised by myself in the hearing of the 20th November 2024″ (email, 6th May 2025 12.14pm). The Trust solicitor also forwarded the email she’d sent to me to the Official Solicitor (i.e. to the counsel and solicitor acting on P’s behalf in this case), flagging up the extract I’d quoted as an inaccuracy in the OS’s Position Statement. She’s now reported back that the OS responded to the effect that their understanding was that “the President was made aware of the dispute as to the Living Will but wasn’t alerted to the ongoing treatment which appeared to be contrary to the ADRT“. This, says the Trust’s solicitor, “is not disputed” by the Trust. So my understanding is that the ‘Living Will” was filed with the court as part of the Trust’s application (along with some concerns about its “reliability” [sic]), and that it was referred to in recitals to the President’s order (I’ll confirm that point on receipt of the order) but – crucially from my perspective as someone with an ADRT – nobody alerted the President to the fact that the Trust was providing medical treatment to P that he had apparently refused in his ADRT. I appreciate that there is a significant difference (for the Trust) between, on the one hand, not alerting the President to the ADRT at all (my initial and erroneous understanding) and, on the other, alerting the President to the existence of the ADRT but not to the ongoing treatment apparently contrary to it (which the parties now agree is what the Trust actually did). From my perspective, though, the difference is insignificant, since neither course of action addresses the crucial issue of of the Trust’s continued provision of possibly unlawful medical treatment. This situation would be my worst nightmare come true if a Trust did this in relation to my own ADRT. It is my strong opinion that the treatment-refusal implications of the document should have been front and centre of their concern as soon as the ADRT came to light in August 2024 and an application to determine the validity and applicability of the contested ADRT should have been made by September 2024 as a matter of urgency. As a separate issue, Ms Sond has confirmed that “the living will was filed with the court as part of the applicants application“, which leaves me deeply concerned that the President had access to the ADRT and did not observe for himself that there was a problem with ongoing treatment. I would have hoped that a judge in the Court of Protection would have spotted a discrepancy between the treatment being given to a patient and the patient’s apparent refusal of that treatment, without needing to be alerted by the Trust. (It’s the absolutely FIRST thing I’d have done – whatever the application said – as soon as someone mentioned a ‘Living Will’! )
Postscript 13th May 2025
I have now received the approved Order made by Sir Andrew McFarlane on 20th November 2024. The court heard only from the applicant (P’s partner) as a litigant in person, and from Ms Sond on behalf of the Trust. Both the ICB and the OS had been put on notice of the proceedings and the judge ordered that P’s biological family should be notified too. The application related to the partner’s concerns “that decisions about [P’s] residence, care and contact with family are being made contrary to [P’s] wishes and feelings expressed in his ‘living will’” (recital C). The focus seems to have been on placement options and the Trust confirmed that it would make decisions in P’s best interests and make an application to the court in the event of any dispute. Another recitals says: “The Trust confirmed that the contention between [P’s partner] and [P’s] biological family is noted however there is currently some level of uncertainly as to the reliability of the ‘living will’” (recital F). The notion of ‘reliability‘ is odd in this context, and the words ‘advance decision to refuse treatment’ do not appear. The matter was listed for a next hearing before Poole J on 15th January 2025. At that hearing, the Trust was ordered to file evidence addressing “whether the Trust consider the living will is valid within the meaning of section 25 of the Mental Capacity Act 2005 and if not, why not“. This does not seem to have engendered any sense of urgency. At the hearing I observed, it was clear that the Trust was proceeding on the basis that the ADRT was not valid or applicable to P’s current circumstances, but the evidence on the basis of which they had taken that position was not at all clear (either from their statements in court or from their position statement when I eventually received it). There was also no medical evidence before the court as to P’s condition (diagnosis or prognosis), despite this being a relevant issue for deciding applicability.
[1] This charity no longer exists, but I strongly recommend Compassion in Dying for anyone wanting to find out more about end-of-life decision making, and especially how make a valid ADRT.
[2] For example: Kitzinger J and Kitzinger C. Increasing understanding and uptake of Advance Decisions to Refuse Treatment in Wales (2016); Kitzinger, Celia. 2014. Advance decisions: Do they work in practice? Elder Law Journal 4(2): 198-204.
[3] Kitzinger J and Kitzinger C. 2012. The ‘window of opportunity’ for death after severe brain injury, Sociology of Health and Illness https://doi.org/10.1111/1467-9566.12020
[4] At this point there is, said the judge, an “absence of evidence to explain the failure to produce it [i.e. the ‘Living Will’] for three months”
[5] I suspect from what I know about the treatment provided to patients during and after emergence from PDOC that in fact other treatments are being provided that could be considered ‘life-sustaining’ treatments (e.g. physiotherapy and suctioning to prevent chest infections, various medications). I understood from what was said in the hearing that there are no treatment limitations in place with regard to either cardio-pulmonary resuscitation or antibiotics (in the event that either might be medically indicated), so these life-saving interventions might yet be provided at any time.
[6] There is an application for deputyship pending from P’s partner, which the court cannot determine before having evidence as to P’s capacity to execute a Lasting Power of Attorney (LPA). Although, “put frankly, there appears little prospect of [P] having the capacity to do so at this time” (OS), the court ordered back in January 2025 that a Special Visitor should assess his capacity – but this has not yet happened. Note that a court-appointed deputy (unlike an LPA) cannot make decisions about life-sustaining treatment.
[7] The parties agreed that the wishes expressed in the “Living Will’ about matters such as contact with family members, restriction of information about P to some family members, and a preference not to move to certain types of care setting are relevant to ‘best interests’ decision making under s.4 of the Mental Capacity Act 2005, but do not (cannot, by law) represent P’s binding decisions.
[8] Talking About Dying: How to Begin Honest Conversations About What Lies Ahead, Royal College of Physicians https://www.rcp.ac.uk/improving-care/resources/talking-about-dying-2021-how-to-begin-honest-conversations-about-what-lies-ahead/
[9] Lakhani, M & Workman Talking about death and dying: Five core scripts for doctors, Leicester, Leicestershire and Rutland health and social care


















