Re AB (ADRT: Validity and Applicability) [2025] EWCOP 20 (T3) is a (rare) example of a court having to grapple with advance decisions to refuse medical treatment. It is rare largely because ADRTs are rare, and also because (in my experience at least), issues relating to ADRTs are usually resolved outside court. The case has a very tangled and complex history, and important issues relating to whether the ADRT in question in fact ever existed in legal terms are still to be resolved. However, for wider and immediate purposes, the judgment is very important for the wider guidance given by Poole J at paragraph 53, in which he notes that:
There are few reported judgments concerning ADRTs and none have the unfortunate history of this case. The Trust has rightly accepted responsibility for failing to address the apparent ADRT in a proper and timely manner once it was brought to light. This case provides some important lessons for individuals who have made an ADRT or are contemplating doing so, for their families and friends, and for clinicians and NHS Trusts. They include:
53.1 The MCA 2005 Code of Practice, paragraph 9.38 states:
“It is the responsibility of the person making the advance decision to make sure their decision will be drawn to the attention of healthcare professionals when it is needed. Some people will want their decision to be recorded on their healthcare records. Those who do not will need to find other ways of alerting people that they have made an advance decision and where somebody will find any written document and supporting evidence. Some people carry a card or wear a bracelet. It is also useful to share this information with family and friends, who may alert healthcare professionals to the existence of an advance decision. But it is not compulsory. Providing their GP with a copy of the written document will allow them to record the decision in the person’s healthcare records.”
An ADRT will not be effective if the relevant people do not know it exists. In the present case the ADRT had not been placed in AB’s medical records or provided to his GP before he sustained his brain injury. AB relied on friends to alert healthcare professionals of the ADRT but they did not do so for nearly four months after his brain damage was sustained. Any individual wanting to make an ADRT would be well-advised both to (i) provide a copy to their GP, and (ii) give clear instructions to anyone else to whom they provide a copy to bring it to the immediate attention of healthcare professionals in the event that the individual is unable to make decisions for themselves about their medical treatment.
53.2. Disputes about the authenticity of an ADRT may be rare but provision of the document to the individual’s GP would avoid any later allegations that the document was made at a later date than appears on its face.
53.3. A signed, written ADRT that is valid and applicable to the clinical situation is legally binding on clinicians. There is no need for a best interests discussion because the patient has made their decision and it is to be treated as if it is their decision at the time when a question of treatment arises. The wishes of the family cannot override a valid and applicable ADRT nor can clinicians’ views of the wisdom of the ADRT.
53.4. The RCP PDOC Gudelines 2020 state:
“Where there is genuine doubt about the capacity of the patient at the time to make the ADRT or about its validity or applicability, legal advice should be sought and, if necessary, an application made to the Court of Protection.” (paragraph 4.5.1).”
The Trust’s previous internal guidance did not follow the RCP PDOC Guidelines 2020 in this respect. Furthermore, the Guidelines emphasise that clinical teams should request a copy of the ADRT and not rely upon a report of what it says. These documents require careful consideration as Hayden J said in NHS Cumbria CCG v Rushton (above):
“25. Mrs Rushton’s circumstances do however provide an opportunity for this Court to emphasise the importance of compliance both with the statutory provisions and the Codes of Practice, when preparing an Advance Decision. Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes. The Court has highlighted the profound consequences of non-compliance with the requirements: W v M and S and A NHS Primary Care Trust [2012] COPLR 222; Re D [2012] COPLR 493.
26. It perhaps requires to be said, though in my view it should be regarded as axiomatic, that the medical profession must give these advanced decisions the utmost care, attention and scrutiny. I am confident the profession does but I regret to say that I do not think sufficient care and scrutiny took place here. The lesson is an obvious one and needs no amplification. Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.”
AB’s apparent ADRT demanded careful scrutiny as soon as it was brought to light. That ought to have involved some immediate enquiries to ascertain its validity and consideration of its applicability. Once doubts were raised about its authenticity there was a need for an application to the Court of Protection.
53.5. A prolonged disorder of consciousness is one in which the patient is unconscious for more than four weeks (RCP PDOC Guidelines 2020, paragraph 1.1). For a patient in a PDOC, in the absence of a known ADRT, those responsible for treating P will need to follow the best interests guidance within the RCP PDOC Guidelines 2020 and within caselaw such as NW London CCG v GU [2021] EWCOP 59. The emergence of a patient from PDOC is of considerable importance and should be recorded only when the criteria for emergence are met and recorded. The importance of a finding of emergence can hardly be understated. It is relevant to decision-making about treatment and best interests, as well as to communications with the family and long-term planning. In the present case it was also crucial to the applicability of the ADRT which the Trust had at the time when it recorded emergence. Accepting Professor Wade’s opinion, it is regrettable that professional rigour was not applied at the time when it was wrongly noted that AB had emerged from his PDOC when under the care of the Trust. That error has contributed significantly to delay in identifying and then resolving the issues in this case.
53.6. MCA 2005 s25(2) sets out when an ADRT is not valid. A clinician is unlikely to know simply by looking at the document whether it has been subsequently withdrawn, whether it has been rendered invalid by the making of an LPA, or whether P has done anything else clearly inconsistent with the ADRT remaining their fixed decision. The Trust’s new internal guidance enjoins a clinician presented with an ADRT to assume that it is valid unless they have doubts about its validity. However, it would be wise for clinicians presented with an apparent ADRT pro-actively to make enquiries – with the family or friends of P if possible – to discover whether there is any evidence that might call into question the validity of the ADRT under MCA 2005 s25(2).
53.7. Unless the ADRT is clear, questions as to its applicability under MCA 2005 ss25(3) and (4) and, if the treatment under consideration is life sustaining treatment, s25(5), require careful consideration and may require legal advice to be sought, as the RCP PDOC Guidelines 2020 recommend. If there is unresolved doubt or an ongoing dispute about the validity, applicability and/or authenticity of an ADRT, then it is likely that an application to the Court of Protection will be required. The Trust accepts that it should have made such an application in this case. Instead, CD made the application but her primary concern at the time of the application was not the ADRT but the parts of the Living Will and Letter to Presiding Judge dealing with contact with members of AB’s family. Hence the issues concerning the ADRT itself were not promptly brought to the Court’s attention until January 2025. The Trust had the resources and experience to make a prompt application for a determination of the validity and applicability of the ADRT and it should have done so. The need to make a prompt application when the validity, admissibility or authenticity of an ADRT are in doubt or dispute is clear: administering a treatment to a person who has refused it through an authentic, valid and applicable ADRT is as unlawful as is providing treatment to a person with capacity who refuses consent to it. MCA 2005 s26(5) allows treatment to be given “while a decision as respects of any relevant issue [relating to an apparent advance decision] is sought from the court” but that is not a reason to delay seeking a decision from the court.
53.8. Even if the ADRT is not valid and/or is inapplicable, it may yet be taken into account in a best interests decision. Furthermore, clinicians and P’s family may agree that P’s best interests coincide with their expressed wishes, even if those wishes were contained in an invalid or inapplicable ADRT. Even if there are disputes about the provision of some treatments, such as CANH, there may be agreement about others, such as CPR. Hence, ongoing consideration of best interests should not be put on hold whilst the validity and applicability (and indeed, authenticity) of an ADRT is being scrutinised. These are processes that should be followed in parallel with each other.
53.9. Any person who questions the authenticity of an ADRT which is ostensibly valid and applicable, or who is concerned that it was made under undue influence, must provide some reasonable grounds for raising those issues. The Courts will not sanction significant delays in resolving disputes about an ADRT without good cause.
In addition, it is worth noting that Poole J, in considering whether the ADRT in question was invalid and applicable, returned to his analysis in PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52, and noted that:
42. No party has taken any issue with that analysis. In particular, no party suggested that, as a matter of principle, for the purposes of s25(2)(c) the Court should disregard what AB has done after he lost capacity to make decisions about his treatment. Whilst the Courts have to make binary decisions about whether P has or has not lost capacity to make decisions about their treatment, it does not follow that everything P says and does after losing capacity should be disregarded. In a different case a person might lose capacity but still be able to vocalise a desire not to be bound by the ADRT they had previously made. It would be troubling if that was to be wholly disregarded.
Comment
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, as identified in PW (and see further here). 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.
