By Claire Martin, 13th June 2025
Le soleil ni la mort ne se peuvent regarder en face.
François de La Rochefoucauld, Maxim 26
You cannot stare straight into the face of the sun, or death.
Over the course of the last year or so, I’ve been thinking about what provisions I want to put in place in the event that I might lack capacity to make my own decisions about my health and social care in future. I’ve watched so many hearings concerning people who haven’t considered, in advance, at a time when they did have capacity to make those decisions, what they would want in the future – and that’s caused untold heartbreak for their families, and challenges for the court, in trying to establish what their former wishes would have been, and how to make a best interests decision that properly takes into account those former wishes, feelings, values and beliefs[1].
And so, I’m trying to make an Advance Decision to Refuse Treatment [ADRT] (currently in draft form) and I have also drafted an Advance Statement. I already have in place Lasting Powers of Attorney (both for Health & Welfare and for Property & Finance). In this blog post I reflect specifically on my concerns about my ADRT in the context of a case before Mr Justice Poole (COP 20006397). I observed a two-day in-person hearing (remotely) all day on 22nd May and part of the day on 23rd of May 2025. I have not observed previous hearings in the case, but have read blog posts about them which provided essential background [2].
The first judgment in this case has now been published (AB (ADRT: Validity and Applicability), Re [2025] EWCOP 20 (T3) (10 June 2025) and it addresses the validity and applicability of the ADRT for the man, AB, at the centre of the case.
The story is terribly sad. AB is a 43-year-old man who is being given medical treatment to keep him alive in a minimally conscious state. There’s a document that AB made not long before his brain injury, that he called a “Living Will” (not a legal term, but one which is commonly used), which includes refusals of life-sustaining treatments, including clinically assisted nutrition and hydration (i.e. the feeding tube, which is the main treatment currently keeping him alive). There’s been a dispute about whether these treatment refusals constitute a legally binding valid and applicable Advance Decision to Refuse Treatment (ss. 24-26 MCA 2005): that’s been resolved: the court has now ruled that they do. But the family also says that the document is fraudulent (that it’s not his signature on it) or if it is his signature, then it was made under duress or undue influence. Meanwhile, the Trust continues to give him medical treatment which is quite possibly contrary to his legally binding instructions, and may also be contrary to his best interests – although these seem not to have been properly addressed. There is a bitter dispute between AB’s birth family and fiancée that is likely to be aired in court at the next hearing on 30th June-3rd July 2025.
For me, this case is of great interest because it involves determination of the legal status of an Advance Decision to Refuse Treatment (ADRT) so I clearly have a personal stake in the outcome of this case.
My Advance Decision to refuse treatment
I am completing my ADRT with the very clear and helpful ‘Living Will’ service on the Compassion in Dying website. I have procrastinated and prevaricated, not because I don’t want to complete it, but because I want to ensure that I have properly considered what treatments I am refusing, under what circumstances, and that whatever I sign is valid, and will apply when I want it to.
At the same time, I have noticed that I have found it a harder document to complete than I anticipated. I muse on the potential reasons for this later (see “Reflections” at the end of this blog), but on a practical level I have needed to think in a lot of detail about which specific treatments I would wish to refuse under which specific circumstances. And from a current position (for me) of not knowing what those circumstances would be, because I do not have a life-limiting or chronic condition that has a predictable trajectory with putative treatments that I can consider in advance, with foresight, and decide whether or not I would wish to consent to them.
However, ADRTs aren’t set in stone, they can (and should) be revisited and revised (if appropriate) regularly, at least yearly. That’s the advice I have heard many times, given the nature of the document and the nervousness that they can engender in health settings. So, I am now thinking that it is enough to know the broad canvas of what treatments I would and wouldn’t want if, at some future time, I wasn’t able to make a capacitous decision myself (e.g. life-sustaining treatments in a long-term coma are definitely on my “refusal” list), and I can add nuance and detail in years to come.
Furthermore, what I do know about myself and what matters to me, tells me that I should complete an ADRT now, because I know for certain that I would not want to endure some ‘benefits’ of modern medicine, simply to keep my body alive in specific circumstances, like those for AB, the man at the centre of this case. His ADRT, which has now found to be valid and applicable (though his family is asserting it is a forgery or made under coercion), stipulated the kinds of things that I too would want to refuse for myself.
My interest in this hearing and its outcome is therefore heavily influenced by the direct impact it will have on how I make plans for my own future, in the form of my ADRT and Advance Statement.
Mr Justice Poole is an excellent judge in my opinion. I have observed him to be pragmatic, clear and humane in many other hearings. The fact that he is the judge for this case made me eager to observe and understand the issues before the court and how they are resolved. How could AB’s ADRT have reached such a point of dispute, and (for him) after such a long time following his initial brain injury? How would the court navigate the questions of validity and applicability for an ADRT? What does this mean for those of us who want to write our own ADRTs and have them respected in future?
Sadly, though, this hearing made me less, not more, confident that my ADRT will be respected in a future scenario when I cannot decide contemporaneously for myself. This is not due to the way Mr Justice Poole conducted the hearing for the case that I observed, but due to the way in which the NHS Trust has handled AB’s ADRT from the get-go, necessitating the court process, leading to protracted litigation, and revealing disturbing issues in how AB’s care was managed.
In the May 5th 2025 blog, Celia Kitzinger noted: “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)”
I understand that the circumstances under which AB’s living will came to light are in dispute, and that is the reason his purported ADRT is in doubt. That will not be the case for me – I intend to speak to my GP about my ADRT, and ask her to put it on my medical file. At a time when I am not worried about my health, I will share it with my family and close friends, so that they know what medical treatment I want to refuse in future and under what circumstances. As noted in the earlier blog post: “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“.
This point of law is emphasised by Mr Justice Poole in the judgment for this case:
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. (§53.3 (AB (ADRT: Validity and Applicability), Re [2025] EWCOP 20 (T3) (10 June 2025)
So, I am at pains to ensure it will be my decision – and that my family will not be under any pressure to contribute to decisions about me in future. I know what that might feel like and I do not want them to be faced with such a scenario. Some years ago, my mum had an emergency with her appendix. Two options were available: either she could have surgery to remove the appendix or alternatively the doctors offered to treat her with antibiotics (called non-operative management of appendicitis). She was at extremely high risk of death with the surgery (because of her other health conditions). She was at extremely high risk of death without the surgery. It was her decision. When the doctors came to discuss the decision with her and me, I remember panicking inside: ‘What if I say that I think she should have one option and she dies, or has brain damage from no oxygen if they operate?’ I looked at her in distress and said ‘I don’t know what to say’. My mum, bravely and to look after me, said ‘I have to make this decision’. She had the surgery and survived it. She was able to make that capacitous decision though. Had she not been, then I (as her Health & Welfare attorney, and given that the doctors were saying the decision was hers because both options were available) would have had to make the decision for her.
Although this scenario is not the same at all as AB’s, it illustrates why I want to make an ADRT: not only to prevent me enduring a life I would not want to endure, but also to look after my family.
Although I have a Lasting Power of Attorney in place for health and welfare, I want to ensure that the burden of any decisions made on my behalf by my attorneys is not more distressing than it needs to be for them. How can I confidently protect my attorneys and ensure that – at least for some life-and-death decisions – it is I, ultimately, via my ADRT, who remains the decision maker?
An alarming case in court
What I observed in this hearing alarmed me, particularly in relation to questions of whether AB’s ADRT was ‘applicable’ in the circumstances he was in: there was a startling lack of clarity – after more than a year in hospital – about whether or not he had ‘emerged’ from a prolonged disorder of consciousness, and how his current diagnosis and prognosis related to his statements in his ADRT. It made me think that – unless I can absolutely and clearly define what I mean, for example, by ‘quality of life’, ‘recovery’, ‘functioning’ – potentially gossamer-thin differences and distinctions could be used to argue to continue ongoing treatments that I have refused, in order not to ‘give up’ on me.
In this case, AB’s meaning of the word ‘quality’ was questioned by the treating NHS Trust. AB wrote in his ADRT: “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 not [sic] quality of life.”” The blog post reporting on the March 26th 2025 hearing (which I didn’t watch) reports the the NHS Trust’s position on the applicability of the ADRT at that time: “ ….. 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”.”
By the time of the hearing on 22nd-23rd May 2025, the Trust’s position had changed, as Mr Justice Poole records in his judgment:
§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 [AB’s fiancée] 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.
AB (ADRT: Validity and Applicability), Re [2025] EWCOP 20 (T3) (10 June 2025)
I fear that my family might be put in a position of thinking that any scintilla of doubt (about what I meant by ‘quality of life’, ‘recovery’ or ‘functioning’) would mean that my prior refusal of treatments X, Y or Z should not apply.
For example, this excerpt from my values statement that accompanies my draft ADRT says: “I love sharing time together, playing games, chatting, eating and enjoying each other’s company. If I were unable to do this in a meaningful way with the people I love, I would consider my quality of life not worth living“.
Would my word ‘meaningful’ be queried by clinicians in the same way ‘quality’ was queried for AB? How can I be clear so that people know what I intend when I use specific words? I understand that health professionals want and need to be certain of their own legal footing when making life and death decisions. I would certainly want to be. How this Trust acted in relation to AB, however, makes me think that their approach was not driven by a desire to make sure that they knew what AB himself would have wanted, but by something else. Perhaps the uncertainty (and expense?) of the legal process? Or a paternalistic imperative to keep someone alive at all costs (despite their apparent – potentially legally binding – wishes)? Or were they simply distracted by the arguments about contact between AB and his family (which are part of the ‘living will’ but not part of the ADRT)?
Celia Kitzinger argues passionately that citizen-led (as opposed to clinician-led) advance care planning is deeply anomalous in the NHS context, and leads to lack of respect for ADRTs people draw up outside of the NHS forms and procedures, like AB’s, and like Celia’s own. She reports her own experience of this: “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“.
I think she may well be right. I recently spoke in an NHS context about fluctuating mental capacity and presented some legal cases and judgments. I was dismayed to hear some (very experienced) clinicians say that they would ‘over-ride’ someone’s previously expressed wishes about treatment, in order to keep them alive. Their view was essentially: how can the person know in advance what they will and won’t accept as an adequate quality of life, until they are faced with the situation? And because they think someone cannot know in advance, they believe they should act in accordance with their own values in this respect.
There’s a valid point here: how does any of us know, exactly, how we would feel about and respond to being in a severely brain-damaged (or any other incapacitous) state? We don’t.
But for me, that’s not the point. This line of reasoning risks prioritising clinicians’ values and feelings over those of the patient, and is a dangerous, and controlling, path to follow. The law is that, for those of us who feel sufficiently moved to think ahead and want to try to exert some control over what is done or (more accurately) not done to us medically when we lose the capacity to consent to or decline treatment, we can legitimately record those instructions in a legally binding way that treating teams must follow. Surely this protects the medical teams as well?
The Position Statement from the Official Solicitor (OS) at the 22nd May 2025 hearing I observed states the following:
What this case does underline is how important it is for a Trust to properly ventilate these matters before the court. The history of this case is not acceptable.
On the last occasion, the Trust accepted that it ought to have:(a) made an application to the court, in respect of the ADRT, as soon as they considered there was an issue as to validity / applicability;
(b) alerted the President of the Family Division (when the matter came before him in respect of the contact application) that they were treating P contrary to the ADRT, having determined it was in some way either: (i) invalid or (ii) inapplicable;
(c) made contemporaneous records of their decision making in respect of the validity or applicability of the ADRT.
The fact that safeguarding professionals both at the Trust (and outside of it [3]) did not identify the issue with the ongoing treatment against the background of the living will is remarkable. The Official Solicitor cannot say any more than that in these proceedings.”
Trusts should also have an eye to their own finances in such cases. In relation to costs the OS Position Statement also says: “The Official Solicitor’s position as to costs remains reserved, especially in respect of the instruction of Professor Wade. Many of the costs could have been avoided if the Trust had correctly proceeded with bringing this matter to court earlier”. The Trust in this case did not seek an expert opinion with respect to prognosis, nor did they seek legal clarification of the ADRT – that was, shockingly, initiated by AB’s fiancée. It is clear in Poole J’s judgment that, where there is disagreement of the kind that occurred here, the case should have been referred to the court. It was the Trust’s responsibility to make the application:
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. […] 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. §53.7 AB (ADRT: Validity and Applicability), Re [2025] EWCOP 20 (T3) (10 June 2025)
The Royal College of Physicians Prolonged Disorders of Consciousness (RCP PDOC) Guidelines can be found here.
Alex Ruck Keene KC, summarises these issues in his blog about this judgment: “Even advance decisions that clearly exist (i.e. where there is no doubt that the person had the relevant decision-making capacity, and was not under coercion) pose ethical dilemmas […] However, even more problematic is the situation where those involved do not know what questions to ask, or actions to take, in the face of knowledge of a potential ADRT being in play. Poole J’s guidance is therefore particularly useful for setting out so clearly what needs to happen“.
My fears are about those involved in my future care not knowing ‘what questions to ask, or actions to take’ despite knowing about and being in possession of my – legally binding – ADRT.
Reflections on mortality and planning for the future: Staring into the sun
Existential psychotherapist Irving Yalom quotes the maxim from La Rochefoucault with which I opened this blog post, likening facing one’s mortality to ‘staring at the sun’. That’s also the title of his book (downloadable here). He says:
“It’s not easy to live every moment wholly aware of death. It’s like trying to stare the sun in the face: you can stand only so much of it. Because we cannot live frozen in fear, we generate methods to soften death’s terror. We project ourselves into the future through our children; we grow rich, famous, ever larger; we develop compulsive protective rituals; or we embrace an impregnable belief in an ultimate rescuer.
Some people—supremely confident in their immunity—live heroically, often without regard for others or for their own safety. Still others attempt to transcend the painful separateness of death by way of merger—with a loved one, a cause, a community, a Divine Being. Death anxiety is the mother of all religions, which, in one way or another, attempt to temper the anguish of our finitude. God, as formulated transculturally, not only softens the pain of mortality through some vision of everlasting life but also palliates fearful isolation by offering an eternal presence and provides a clear blueprint for living a meaningful life.
But despite the staunchest, most venerable defenses, we can never completely subdue death anxiety: it is always there, lurking in some hidden ravine of the mind. Perhaps, as Plato says, we cannot lie to the deepest part of ourselves.”
Yalom, Irvin D. 2008. Staring at the Sun: Overcoming the terror of death. San-Franscisco: Jossey-Bass.
Perhaps our wish to make future plans via ‘Living Wills’ is about us not lying ‘to the deepest part of ourselves’.
In relation to wills (i.e. last wills and testaments), the National Wills Report in 2024 reported that “over half of people have written a will in the UK, including 57% of men and 50% of women. That means that (on average) between 40-50% of people do not have a will. The stats below show the breakdown by different groups:
I fall into the groups ‘living with a partner’ and ‘with children’ and I have had a will (and LPA) for a long time.
Why haven’t I finalised my ADRT? I have been thinking about it for several years. I have been drafting it online for at least the past year or so. Maybe a part of me agrees with the caution: how do I know what I would want in future situations of which I currently have no personal experience? Maybe part of me has a fantasy, suggested by Yalom above, that there will be an ‘ultimate rescuer’ and that I might be making premature decisions that would mean I die when in fact I could have lived in a way that was acceptable to me. Maybe I just can’t face ‘the anguish of [my] finitude’.
All of that might be true. A version of a head versus heart dilemma. I know (in my head) that the reality, like for AB, is that being alive following severe brain damage is not a life I would want to live, or to put my family and friends through with me.
Also, my line of work is with older people, many of whom have dementia or other neurological conditions. So, although those experiences are not my own personally, I have witnessed life for people with such conditions, their families and friends, and I know my own views on what I would and would not want in those circumstances. I have worked with many inspiring people who have faced their own ‘finitude’ and have been able to guide others around them, both professionals and those close to them, to respect their wishes.
Yet maybe, in my heart (which possibly reflects why so few of us engage with advance care planning in the form of wills, ADRTs, LPAs), it’s hard to imagine that this sort of scenario will happen to me, and even if it did, it’s too upsetting to contemplate.
For me though, the grit in the oyster is that I know, if I make myself think about it and stare at the sun, what I would find intolerable (if I had conscious awareness). I also know that, if I did not have conscious awareness, and was not going to regain that awareness to a point where I could advocate for myself, I would not want to be kept alive.
I am wondering whether my procrastination is a slow but sure process akin to the complex ‘on the balance of probabilities’ approach that I have often seen in the Court of Protection at its best. I will never know for certain (how could I, and how could anything like this ever be certain?) but it is on balance my considered wishes and feelings for my future self who has lost the ability to tell people at the time. I know myself better than any professional would, who is meeting me for the first time, and I definitely don’t want ‘best interests’ decisions being made for me by others who have never known me, if I can help it.
For me, this is taking time. For others it might be much more straightforward. For others still, an ADRT might not be something they wish to make at all, and they would rather doctors make those decisions for them. All of these positions are within our gift to adopt.
But many people do not know about the existence in law of ADRTs – including those working in health and social care settings. If we don’t know about the possibility of making our wishes and feelings known, how can we make an informed decision about our futures? And how can we help those we work with to decide whether they would like to make these provisions for themselves?
Without this sort of planning ahead for when we lose capacity to make decisions for ourselves – which, let’s face it, is very likely to happen to very many (probably the majority) of us – then others will have to make those decisions for us.
And there will be loads and loads of decisions. Some relating to refusal of medical treatment (so ADRTs) and others not. What will I wear? What will I eat (I am vegetarian and have never eaten a steak and never want to!)? Where will I live (I am not keen at all on communal living and quite like being on my own)? There are small daily decisions as well as important, ‘macro’ decisions like those covered in ADRTs about refusing medical treatments. Our wishes and feelings about what we would want daily life to be like can be covered by an Advance Statement (which is also part of the ‘Living Will’ service with Compassion in Dying) to accompany an ADRT. Advance Statements, though not legally binding, do have legal standing and provide some guidance and protection for us in our future care when other people are making best interests decisions for us.
Mr Justice Poole reproduces some of AB’s ADRT in his judgment. At present AB’s family is alleging that the ADRT is fraudulent or coerced. The judicial finding on that allegation is to be determined at the end of this month (June 2025). I quote some of AB’s ADRT here (from the judgment), because I really like the way it is written in ordinary layperson’s terms. I think it conveys a sense of how one might ‘stare into the sun’ and reach an on-balance view, and I find it as sobering as I do inspiring in its straightforwardness[4]:
Ҥ28 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):
‘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 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.’”
I am finding this case disturbing, vicariously – for AB, his fiancée and family – and also personally. Given what’s happened with AB, I feel all at sea about whether there’s any point in making a ‘Living Will’ (i.e. an ADRT and a carefully articulated advance statement about my wishes and values). I now have very little confidence that clinical teams will follow the law when it comes to my ADRT. It could be that most of the time ADRTs are followed without difficulty and when they are, of course, this doesn’t end up in court. I don’t know. I await the final outcome of the case with great interest.
Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core team of the Open Justice Court of Protection Project and has published dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She is on X as @DocCMartin, on LinkedIn and on BlueSky as @doccmartin.bsky.social
Footnotes
[1] See for example: Treatment withdrawal in the ICU when clinicians and family disagree; A best interest decision about life-sustaining treatment for a person with profound neurological injury following COVID-19 infection; Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY; Best interests in a contested end-of-life case: Cambridge University Hospitals NHS Foundation Trust v AH & Ors [2021] EWCOP 51.)
[2] For more information about what has been happening in this case so far, see: Determining the legal status of a ‘Living Will’: Personal reflections on a case before Poole J and Validity and applicability of an Advance Decision to Refuse Treatment: A pre-trial review .
[3] The local authority was conducting safeguarding enquiries while P was an inpatient at the Trust and were aware of the living will document.
[4] Please don’t use this ADRT as a model for your own. The charity, Compassion in Dying, can help you think through what you want and produce an ADRT specific to you, which (we hope!) will be recognised as valid and applicable by NHS services and won’t end up being disputed in court. They offer downloadable forms and also a nurse-run helpline (tel: 0800 999 2434) 11am-2pm Monday to Thursday.
Promoting Open Justice in the Court of Protection 