University College London Hospitals NHS Foundation Trust v PK & Anor [2025] EWCOP 17 (T3)

[2025] EWCOP 17 (T3)Case No COP 20012480
IN THE COURT OF PROTECTION
Venue Royal Courts of Justice, Strand, London, WC2A 2LLDate 14/05/2025
Before
THE HONOURABLE MR JUSTICE MCKENDRICK
Between
UNIVERSITY COLLEGE LONDON HOSPITALS NHS FOUNDATION TRUSTApplicantPKRespondents(By his litigation friend, the Official Solicitor)ABRespondent
Mr Adam Fullwood (instructed by Browne Jacobsen LLP) for ApplicantMs Debra Powell KC (instructed by the Official Solicitor) for First RespondentMr Joseph O’Brien KC and Ms Laura Twist (instructed by Irwin Mitchell) for Second RespondentHearing Hearing dates: 7-9 May 2025
Approved Judgment.............................This judgment was delivered in public but a transparency order is in force. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of P and members of his family must be strictly preserved. All persons, including representatives of the media and legal bloggers, must ensure that this condition is strictly complied with. Failure to do so may be a contempt of court.McKendrick J:Introduction
[1]This application concerns the medical treatment of a much loved family man and devout Muslim. He is anonymised in this judgment as PK. The applicant seeks a declaration in the Court of Protection that it is not in PK’s best interests to receive clinically assisted nutrition and hydration (hereafter “CANH”). Without this he would pass away in a matter of days or weeks. The second respondent is Mr PK’s second child and eldest daughter. She is anonymised as AB. She on her own, and on behalf of her mother and other siblings, opposes the declaration sought.[2]Over three days I heard evidence and submissions on this issue. I have determined to refuse the declaration sought by the Trust and I dismiss their application. I set out my reasons for arriving at this conclusion below.

Background

[3]PK is a 73 year old gentleman. He met his wife in 1986 in the Middle East. They have, and continue to enjoy, a close and loving relationship. They have six adult children: four sons and two daughters. In 2019 PK was diagnosed with mixed vascular and Alzheimer’s dementia. He has other medical conditions including a hearing impairment and a left brachial plexopathy secondary to a fall and left shoulder dislocation that happened in October 2023. At the time he was largely wheelchair bound and fell when trying to mobilise using a frame. He received treatment in hospital in November 2023. On discharge home he was provided with a package of care. He was aware of the role of the carers and accepting of their involvement.[4]In April 2024 PK was admitted to hospital with right flank pain and found to have an obstructing calculus in the mid right ureter which was treated with a right nephrostomy. Following discharge he was admitted on 15 October 2024 for ureteroscopy, laser stone fragmentation of distal ureteric stone, removal of right nephrostomy and insertion of a stent. Following the operation on 16 October 2024 PK suffered a sudden right facial droop, right sided weakness and aphasia observed by his family and highlighted to the urology team. His symptoms improved after five minutes. He was given Aspirin. His weakness resolved but he became confused. The working diagnosis was that he had had another TIA and also had post operative delirium.[5]On 20 October 2024 he suffered a severe sudden onset right facial droop and hemiparesis with the following observations: Glasgow Coma Scale (GCS) score of six: Eye 4, Verbal 1, Motor 1. A CT scan was performed that showed a large left hemisphere intracranial haemorrhage. On 24 October 2024 his GCS improved to 8 and a decision was made to transfer him to stroke services for specialist care. Since 25 October 2024 PK has been cared for at the National Hospital for Neurology and Neurosurgery (NHNN). He had a nasogastric (NG) tube inserted as he could not safely swallow fluids and food. A daily aspirate of stomach fluid is required to confirm placement of the nasogastric tube. This is often not possible to obtain and so the patient is sent for a Chest X-Ray (hereafter “CXRs”) to confirm placement. PK has had around 25 CXRs between his admission and March 2025.[6]On 17 December 2024 PK was discussed at an MDT meeting when the following was recorded:
“…Team is discussing ceilings of care and the trajectory is appearing palliative so far. The MDT's impression is that a procedure for PEG it would not be tolerated most likely. Of course, if circumstances changes, and that discharge to a nursing home is contemplated, then the matter could be re-discussed. Also a RIG appears also unlikely, give the current clinical circumstances. The prognosis is likely that he shall not recover neurologically. Outcome and Plan: WE agree with Stroke team that PEG a is not currently clinically appropriate…”
Outcome and Plan: WE agree with Stroke team that PEG a is not currently clinically appropriate…”

Outcome and Plan:

[7]Further meetings to discuss PK’s best interests were held on three occasions on 3 January, 10 January and 17 January 2025 but no agreement was reached with the family concerning withdrawal of treatment.[8]On 27 January 2025 Dr Turner assessed PK as lacking mental capacity to make his own decisions regarding care and treatment as a consequence of his large intracerebral haemorrhage in his left hemisphere. On 13 February 2025 a further best interests meeting was arranged with PK’s treating clinicians and his wife, son and two daughters. The proposal for withdrawal of current invasive treatment and provision of palliative care was discussed. The family confirmed they did not agree with the proposal.[9]Dr Turner confirms PK continues to tolerate the NG feeding regime and that he is stable, both in weight and clinically. He confirms that two additional issues were being considered/managed:(a) a split urostomy tube and(b) blistering of his skin on the inside of each thigh. PK has the continuing involvement of SALT and physiotherapy. An assessment by a consultant neurologist concluded PK is not in a prolonged disorder of consciousness and was conscious of himself and his environment.[10]The applicant sought a second opinion. Dr Al Mayhani, Consultant Neurologist and Second Opinion doctor, provided a report dated 5 February 2025. He agrees with PK’s treating clinicians. He states: “…[PK] has a severe left cerebral haemorrhagic stroke. This type of stroke is certainly disabling, and can be even more disabling in a frail gentleman like him who has extensive co-morbidities. The advanced brain atrophy (due to dementia) has allowed the large haematoma to significantly expand without causing brain herniation or brain death. This has subsequently resulted in slight improvement in the level of consciousness to 8/15. However, the content of consciousness, along with his swallowing, speech and motor function, have never recovered to his (already poor) pre-stroke state due to the catastrophic impact of the stroke and his pre-admission poor baseline (he was largely bedbound/wheelchair bound prior to the stroke). His current inpatient admission has been complicated by recurrent episodes of sepsis (almost inevitable in a frail patient with prolonged admission to hospital), and each episode will likely result in stepwise decline in his already poor health and worsen the prognosis. During his stay in the hospital, he has been profoundly impaired (in cognition, speech, swallowing and motor function), fully dependent for all activities of daily living, and has not shown any signs of reasonable recovery or engagement.[11]In the absence of agreement between clinicians and the family, the applicant issued its application for relief on 4 March 2025. Case management orders were made by the Vice-President, Theis J and me. The Evidence Dr Turner

The Evidence

[12]Dr Turner is a consultant in stroke and geriatric medicine. He has been a consultant for seven years. He has been involved in PK’s care since late 2024 and represented the stroke team at various best interests meetings. He explains that PK receives the following treatment:a. Nasogastric feeding;b. High intensity nursing with 2-4 hourly turns and positioning, care for faecal incontinence, mouthcare, washing, dressing and bed changes;c. A urostomy tube for ongoing draining of urine;d. The following medications: enoxaparin injections; finasteride; paracetamol and pregabalin (for pain) and levetiracatam;e. CXR is necessary to confirm the NG tube placement.[13]He explains that PK can look around and make eye contact. He does not make speech or sounds. He states he cannot follow one stage commands when asked to do so in English or Arabic. He stated that:
“on observation he does not appear to be in pain at rest, but when he is moved and his arms extended he does grimace in pain at times. His skin is very frail and thin.”
[14]He states his opinion that PK lacks capacity to make relevant decisions in respect of his medical treatment. This is also supported by a Form COP3.[15]He summarises the clinical view from the best interest meeting, which was that:a. PK had stabilised but remains severely disabled following his stroke;b. His swallow has not recovered and would not recover;c. PK cannot engage in therapy due to his cognitive impairment and communication;d. The unanimous clinical view was that he will not improve given the extent of his stroke and the time that has passed.[16]He states “in light of this the clinical team agree that it would not be in [PK]’s best interests to continue treatment and that a palliative care plan should be put in place.” He noted the family opposed this course.[17]A treatment plan is exhibited to his witness statement. This was drafted by a consultant in palliative medicine.[18]In his second witness statement he informs the court PK is stable, is tolerating the NG tube and his weight is stable. He says an issue arose with his urostomy tube, as it had split and there was spillage on PK’s right flank. The view was taken that changing the tube was not clinically appropriate given his frailty. The second issue was skin blistering on the inside of each thigh. The reason was not clear despite dermatology input. He summarises the situation thus:
“PK presents as a very frail elderly gentleman, who has suffered a severe stroke making him aphasic and with paralysis of the right side of his body. He has a preexisting injury to his left arm that is flexed and is also immobile. He is very frail with almost no muscle mass. His limbs show clear and obvious muscle wasting. This can be seen even in his face with wasting of the temporalis muscle. His legs are now contracted and flexed beneath him which is common in frail patients who have a severe brain injury and dementia and have been nursed in bed for many months. This is despite PK having access to extremely skilled physiotherapists on the ward who attempt to maintain the range of movement and sit him out in specialist seating. Although the NG feeding has maintained the functioning of his vital organs and kept his weight stable, we have seen progression of his frailty and muscle wasting, plus worsening of his contractures in his legs. His skin is also becoming more fragile as evidenced by the blisters that have developed in the last few weeks.”
[19]When asked to comment specifically on PK’s consciousness/level of awareness he states the following:
“PK has a GCS of eyes 4 (open) voice 1 (no sound) and motor 4 (he flexes to pain). PK can make eye contact, but this is not consistent. PK can occasionally smile. The family report he smiles when they arrive and when they interact with him. He cannot reliably follow any commands in English or Arabic. The family say he will squeeze their hand, but this is not consistent with staff and does not demonstrate any ability to understand commands. At best he seems to be able to recognise family members. He does not initiate any of his care needs, does not communicate reliably either verbally or non-verbally, and is completely dependent for care and all his needs must be anticipated by the team on the ward. PK is conscious but has a severe receptive and expressive aphasia. This means he cannot understand verbal or non-verbal communication, and he himself cannot reliably communicate to another person either verbally or non-verbally. This is caused by the damage to the left hemisphere of the brain from his intracerebral haemorrhage in October 2024.I have asked our specialist in minimally conscious states at NHNN, Dr Gerolemos Christofi (Consultant Neurologist) for an opinion on 21/03/2025. He concluded that: Today [PK]'s ability to engage in the assessment was at times variable and limited by excessive cognitive, physical fatigue and frailty. However, on this single assessment, [PK] is conscious of himself and of his external environment. In my opinion, [PK] is not in a prolonged disorder of consciousness (PDOC) such as unresponsive wakefulness state, minimally conscious state minus (MCS-) or minimally conscious state plus (MCS+).”
Today [PK]'s ability to engage in the assessment was at times variable and limited by excessive cognitive, physical fatigue and frailty. However, on this single assessment, [PK] is conscious of himself and of his external environment. In my opinion, [PK] is not in a prolonged disorder of consciousness (PDOC) such as unresponsive wakefulness state, minimally conscious state minus (MCS-) or minimally conscious state plus (MCS+).”[20]He set out why a PEG tube was not considered clinically appropriate.[21]On pain he states: PK seems comfortable when at rest in bed. However, when his arms and legs are moved, he grimaces in pain. He now has flexed contracted legs due to his immobility and being largely bed bound for 4 months. He also seems to have pain from his left arm that has a brachial plexus injury from a previous fall. He has had to be transferred for numerous CXRs to check the NG position, but he seems to tolerate this well. He is kept nil by mouth so mouthcare must be given regularly and we would expect he may be aware of a dry mouth. The true burden is unknown as he cannot communicate reliably at any time.[22]He sets out a best interest analysis in tabular form. The only benefit of the NG tube he identifies is prolonging PK’s life which would allow him to continue to interact with his family which “he appears to enjoy as evidenced by smiling”. Conversely he identifies the burdens as:a. Requirement for high intensity nursing which may cause distress;b. Transfer for CXR;c. Remaining nil by mouth and that he may suffer the symptoms of a dry mouth;d. Infrequent blood tests;e. Risk of sudden onset medical conditions;f. The fact he may experience pain.[23]He identifies the disbenefit of palliation over the NG tube as reducing his life expectancy. Conversely he identifies the benefits as:a. He can receive palliative care which may make him more comfortable;b. He may leave the hospital to home or a calmer environment;c. It is more likely family will be present at the hour of his death;d. He can move from being nil by mouth to ‘risk’ feeding (small amounts of food and water with the risk of aspiration).[24]Dr Turner states PK cannot be discharged home with the NG tube in situ because of the need for x-rays.[25]He was cross-examined and in his oral evidence he struck me as a thoughtful and kind clinician. He updated the court that PK had an infection at the end of March 2025 but had recovered from it. He experienced some pain but was given pain relief and this worked well. The plan to change his stent was cancelled, largely because the current stent works well. His skin blistering was better and did not seem to cause him any discomfort. He confirmed if PK is moved with his arms extended he grimaces in pain. It is short lived. He stated:
“When at his brightest, he does smile and interact with people.”
Whilst Dr Turner had never seen him follow a one stage command he accepted what other clinicians had seen and reported. He explained risk feeding in the context of palliative care and noted the risk of silent aspiration and the likelihood of infection.[26]In answer to a question from Mr O’Brien he stated there was no way to know if PK found the NG tube uncomfortable but he accepted there are no signs of discomfort. He accepted the majority of CXRs took place in October and November 2024. He had received six courses of antibiotics since October 2024. In respect of the split tube, the urological team noted PK’s skin was not irritated and he was stable. No further intervention was considered. He also noted that whilst the skin was blistering it was properly managed and there was no issue about it getting out of control. He stated it was painful to move PK’s legs but answered he was not aware of other pain issues.[27]Dr Turner was aware the family have given PK pipettes of water orally. He stated there was a risk PK will aspirate on the water. He was aware PK can take this and was keen to take it. When he has tests with the speech and language therapist, he is also keen to eat yoghurt. Dr Turner stated that other patients who were ‘nil by mouth’ found it intolerable.[28]Dr Turner acknowledged PK engages with his family. He stated he smiles at them and smiles at people on the Ward. He said: “ I like to believe he recognises family” but was not sure. He relied on Dr Christofi’s observations as to consciousness and awareness. He said that an Arabic interpreter had not been used but an online tablet had delivered “Language Line” interpretation services. He was not aware whether PK heard better with his hearing aids in. His evidence is that PK is nearing the end of his life.[29]In answer to Ms Powell’s question whether he derived pleasure from his family, he said “probably, yes”. He accepted Dr Christofi’s account of his observations of awareness. He accepted that at times, PK could understand spoken language but took the view he did not consistently follow one stage commands. He was clear he had no expressive language but was less clear on his receptive language. He accepted PK’s smiling is communication and that he smiles in response to faces. He also accepted it was more probable than not that the smiling was a genuine as opposed to random response. He also said PK is conscious of his surroundings and when at his brightest is ‘fully conscious’. He agreed PK was “enthusiastic” to eat yoghurt when the therapist carried out tests. He considered being nil by mouth carried the greatest burden. He also had concerns about his dry mouth. He said it was very difficult to say whether PK was aware of being deprived of food and other liquids.

The Consultant Neurologist

[30]Dr Turner asked his colleague Dr Christofi to meet with PK and report on his consciousness. He conducted an assessment for over an hour on 21 March 2025. PK’s daughter was present to interpret in Arabic. He noted PK could track him as he walked around the bed. He is able to localise auditory stimuli. “He was able to undertake single-stage commands without being prompted to copy tasks” which included opening his mouth and sticking out his tongue when asked to do so. He mouthed unintelligible words in response to questions. Dr Christofi states:
“He smiled when I mentioned his football team (Arsenal)”
. He concludes that PK’s ability to engage is variable and limited by excessive cognitive, physical fatigue and frailty. He concludes PK is conscious of himself and of his external environment. He is not in a prolonged disorder of consciousness or a minimally conscious state minus or plus.

The Second Respondent - AB

[31]PK’s eldest daughter has filed two witness statements. Her first statement sets out the background to PK’s life. He was born in an East African country which was often at war. He was brought up surrounded with the violence of his home country. AB states this made him both devoutly religious but also strong and resilient. He then travelled to a Middle Eastern country where he worked and met his wife. He lost his job in 1994 and moved the family to London in 1995. He has lived here ever since. He developed arthritis in his knees which limited his movement but he was a very hands on father. She states how important family is to her father and always was throughout his life. He was diagnosed with dementia in 2019. “He was eager to ‘fix’ his illness and wanted to ensure he lived as long as possible. He took any medications prescribed to help.”[32]His mobility deteriorated further in 2023 after a shoulder injury and he needed carers’ assistance four times a day. This involved toileting and personal care which he accepted. He was still able to hold and play with his grandchildren. Since his stroke in 2024, a member of the family has been with PK every day during the 2pm to 7 pm visiting hours. He smiles during these visits. He is shown footage of his grandchildren and sees them on Facetime. PK smiles when he sees these videos. When they speak with PK he smiles and at times opens his mouth as if trying to respond. She feels he has a level of understanding about what they are discussing with him. She recalls a specific joke in January 2025, when her father laughed and smiled in response. In March 2025 she recounts an incident when she had to take a call about an electricity bill and her father was frowning as if concerned. She then explained in Arabic the call and he raised his eyebrows and opened his mouth in response. In March 2025 he smiled when told his nephew was engaged to be married. He also smiled when told his football team had won the night before and his wife would bring the ipad in to let him watch the game.[33]AB also gives evidence of her father’s Islamic faith. He prayed five times a day at his local mosque when he was mobile and then prayed at home. He read the Qu’ran often and then listened to it on earphones when his reading skills diminished. He completed the Hajj once and the Umrah over fifteen times. She says he often talks to God and often remarked that God has the power to change things. He has expressed strong views about dying. In the summer of 2024 she watched a TV programme about assisted dying with him and says he was confused that anyone would want to prematurely end their life, even if in pain or suffering from disability. He turned to his daughter and said:
“only God decides when you die.”
He always took into account the views of imams and religious leaders. She says:
“My dad was a man of devout faith, and I know he would strongly oppose the removal of his NG tube.”
[34]In her second statement she said she thought her father was improving and could wiggle his toes. She considered Dr Christofi’s report a fair summary of his consciousness. She took her son to visit PK over Eid and she reports he beamed when he saw his grandson and was trying to pat the baby boy’s face and was laughing. She has exhibited some videos of him. She set out her opinion evidence on the benefits and burdens of treatment. She explains how the family have relieved his dry mouth by giving him water from a pipette.[35]AB was questioned by Mr O’Brien and Ms Powell. She was a thoughtful witness and exuded concern for her father. She explained PK used to fast in accordance with Islamic practice until he was unable to do so. She discussed watching the television programme and PK’s strong view that patients might not want treatment, which was not his view. AB’s evidence was that PK’s opinion was that no steps should be taken to hasten the end of life, rather one must await God’s will. She was certain that her father’s view would be to be opposed to removal of the NG tube. This was based on her thirty five years knowledge of him. She discussed providing him with water through the pipette. He would indicate he wanted it by holding the pipette between his teeth and sucking the water. She had never been told by the hospital staff not to do this. Movingly she raised her fear that if she felt her father was in pain and treatment was burdensome, she might need to oppose his views and seek a comfortable end to his life. This clearly troubled her.

The Family

[36]I mean no disrespect by only briefly summarising the written and oral evidence of the other family witnesses who are PK’s wife and his other daughter and his son. His other daughter also gave helpful oral evidence. Their evidence is very similar to AB’s.[37]PK’s wife describes her husband as a sociable man who is very family orientated. He feels a huge sense of responsibility to his children. He always listened to recitations of the Qur’an in the background and kept a copy by his bedside. She views the removal of the NG tube as a sin in Islam and says “and I know [PK] would feel the same way”. She states it would be considered to be taking a life before its time “and it is like the killing the whole of humanity.” She says PK always said he would want treatment no matter what his health issue is. He believed people should always receive treatment. PK has a love of life and always made the best out of a bad situation. She does not believe the NG tube troubles her husband. Her evidence on PK’s awareness is very similar to AB’s. She does not believe he is suffering.[38]PK’s other daughter filed a statement and gave oral evidence. She lives with her mother and lived with her father until his stroke. She says they are very close. She recalls watching television footage of badly injured civilians in the war in Gaza and her father said that irrespective of anyone’s state, they “should get medical treatment.” She states if it was her, she would want the NG tube removed but for her father she does not think he would want it removed. He would view the removal of the tube, under Islam as ending his life and this would be wrong under Islam, she says. She considers he has a good level of awareness. She says that her father recognises her and smiles instantly when she visits. He always responds through facial expressions. She sets out her opinion on the benefits and burdens of treatment. She gave oral evidence and explained her father would frown to indicate he did not want more water from the pipette. She explained the background to the fatwa exhibited to her sister’s witness statement.

The Single Joint Expert

[39]Dr Hanrahan is a consultant in neurorehabilitation. He spent five hours with PK on 27 March 2025 and reported in a detailed report dated 16 April 2025. Dr Hanrahan’s assessment of PK’s consciousness was very similar to Dr Christofi’s. PK was able to follow one stage commands. He showed interest in objects presented to him. “He smiled when I made an error and said Shukria instead of Shukran, to thank him”. He also notes “He was able to move his left foot slightly to command. There were definite smiles of recognition when Arsenal Football Club was mentioned”. He concluded that PK does not appear to be in overt pain but does appear uncomfortable from time to time. However he concluded that pain “at the moment appears to be adequately monitored and treated”.[40]Without the NG tube, PK will die within one to three weeks. Dr Hanrahan states:
“[Removal of the NG tube] in no way is a clinical act to hasten his death. It is about not prescribing a current treatment that has ceased to be of benefit.”
He states that not eating and drinking is not likely to be distressing for PK but may distress the relatives. He concludes that the NG tube trial has come to an end as it is futile in reversing any of PK’s “unrelenting and underlying conditions”.[41]Dr Hanrahan gave confident and authoritative oral evidence. He explained PK’s current situation was burdensome to him for the following reasons: he is in hospital in an acute bed; he has been there for seven months; he does not know what is happening; he is bed bound; he is placed in particular positions and needs to be turned; he has fragile skin; he might be uncomfortable. He also raised concerns about the environment: there were unfamiliar people appearing; there were sensory challenges. He also considered the intimate care to be burdensome. The treatments were also burdensome: blood pressure; blood tests; the NG tube; the urostomy; washing and dressing. Whilst he had not identified it as a burden in his report, he described being ‘nil by mouth’ as burdensome and accepted in answer to a question from Ms Powell that he had “missed that”.[42]He considered the delivery of hydration and nutrition via the NG tube as treatment. He accepted the delivery to the body of the hydration and nutrition was effective but questioned its utility. He accepted the NICE Guidelines he referenced in respect of tube feeding were partly based on resource concerns and acknowledged that was not a relevant factor for this court.[43]On consciousness he agreed PK is not in a PDOC. He said this does not mean he is fully conscious, but rather consciousness is available to him at times. Consciousness is a spectrum he said. When asked if his responses to family were genuine or just a reflex he said:
“I think it does represent a genuine familiarity.”
He noted PK was definitely able to follow instructions to move his left foot. He agreed PK enjoyed being with his family.[44]On pain he described it as ‘background’; ‘breakthrough’; or ‘incident’ related. He was clear that: “He appears not to be in much pain and is settled”.[45]He appeared to query the continued benefit of the NG tube as a benefit in circumstances where there would be no recovery.[46]In answer to a question from Ms Powell that there was a clear benefit to PK living and dying in accordance with the requirements of his faith, Dr Hanrahan said:
“I am not clear about that.”
[47]In answer to questions from Mr Fullwood, Dr Hanrahan was clear he agreed with the applicant Trust’s position on removal of the NG tube. On the question of the burdens he said these would increase over time, as would the pain. He said it was highly likely PK would experience pain when handled but also said that when PK was left undisturbed he did not appear to be in pain. He was clear that pain was well managed and overall he did not think PK was in much pain. He was not convinced PK would miss food.

The Law

[48]I need only set out the law in respect of best interests. I have firmly in mind sections 1 and 4 of the Mental Capacity Act 2005 (hereafter “the 2005 Act).[49]The Code of Practice states:
“5.31 All reasonable steps which are in the person's best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person's death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person's death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment. 5.32 As with all decisions, before deciding to withdraw or withhold life-sustaining treatment, the decision maker must consider the range of treatment options available to work out what would be in the person’s best interests. All the factors in the best interests checklist should be considered, and in particular, the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment. 5.33 Importantly, section 4(5) cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person’s death is foreseen. Doctors must apply the best interests’ checklist and use their professional skills to decide whether life-sustaining treatment is in the person’s best interests. If the doctor’s assessment is disputed, and there is no other way of resolving the dispute, ultimately the Court of Protection may be asked to decide what is in the person’s best interests. ”
[50]In Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 Lady Hale held:
“[35] The authorities are all agreed that the starting point is a strong presumption that it is in a person's best interests to stay alive. As Sir Thomas Bingham MR said in the Court of Appeal in Bland, at p 808, "A profound respect for the sanctity of human life is embedded in our law and our moral philosophy". Nevertheless, they are also all agreed that this is not an absolute. There are cases where it will not be in a patient's best interests to receive life-sustaining treatment. [39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”
[51]It was also explained in Aintree that in so doing the Court must consider whether the treatment in issue would be futile in the sense of being ineffective or being of no benefit to the patient. The treatment does not have to be likely to cure or palliate the underlying condition or return the patient to full or reasonable health, rather it should be capable of allowing the resumption of a quality of life which the patient would regard as worthwhile. The Court must weigh the burdens of the treatment against the benefits of, in this case, continued life.[52]In the case of M v Mrs N & Ors [2015] EWCOP 76, Hayden J said: "28. […] I draw from them only this: where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect. That said, they will rarely, if ever, be determinative of P's 'best interest's'. Respecting individual autonomy does not always require P's wishes to be afforded predominant weight. Sometimes it will be right to do so, sometimes it will not. The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment maybe for the individual patient. Into that complex matrix the appropriate weight to be given to P's wishes will vary. What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them. Finally, I would observe that an assessment of P's wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P's views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment.[53]In Briggs v(1) Briggs(2) Walton Centre NHS Foundation Trust(3) Wirral CCG (No.2) [2017] 4 WLR 37 Charles J concluded, in a case of a man in a minimally conscious state, that the determinative factor in deciding what was in his best interests was what he would have wanted to do and what he would have concluded was in his best interests.[54]In PL v Sutton Clinical Commissioning Group [2017] EWCOP 22, Cobb J held: “13. Before turning to the evidence, I identify some cardinal legal principles which underpin my decision: i) The jurisdiction of the Court of Protection has been properly engaged in these circumstances: see the Code of Practice para. 5.29 - 5.36: ("where there is any doubt about the patient's best interests, an application should be made to the Court of Protection for a decision as to whether withholding or withdrawing life-sustaining treatment is in the patient's best interests" §5.36); ii) I can only make a decision in relation to treatment for PL if I am satisfied that she lacks capacity to make the relevant decision: see section 1(2) , section 3 and section 4 MCA 2005 ; iii) Any decision made under the MCA 2005 for or on behalf of a person who lacks capacity must be made in her best interests ( section 1(5) MCA 2005 ); in doing so, I must take into account 'all the relevant circumstances' ( section 4(2) ibid.); iv) The MCA 2005 specifically provides for me to make the decision on PL's behalf in relation to life-sustaining treatment (see section 16(2) and section 17 MCA 2005 ); v) In making such a decision, I must not be motivated to bring about PL's death (section 4(5) MCA 2005 ); the question which I should ask (as I have at §3 above) is whether it is in PL's best interests to continue with the CANH? vi) The burden of establishing that the discontinuance of life-sustaining treatment is in a person's best interests lies with the person who asserts that it should be withdrawn: R(Burke) v GMC (OS Intervening) [2005] QB 424 at §213(o); vii) The question whether PL lacks capacity within the meaning of the MCA 2005 is decided on the balance of probabilities ( section 2(4) MCA 2005 ); similarly, where I make findings of fact, as I do throughout this judgment, I apply the same civil standard having regard to the guidance in Re B (Care Proceedings: Standard of Proof) [2008] UKHL 35 (see Lord Hoffman at §2). … i) The jurisdiction of the Court of Protection has been properly engaged in these circumstances: see the Code of Practice para. 5.29 - 5.36: ("where there is any doubt about the patient's best interests, an application should be made to the Court of Protection for a decision as to whether withholding or withdrawing life-sustaining treatment is in the patient's best interests" §5.36); ii) I can only make a decision in relation to treatment for PL if I am satisfied that she lacks capacity to make the relevant decision: see section 1(2) , section 3 and section 4 MCA 2005 ; iii) Any decision made under the MCA 2005 for or on behalf of a person who lacks capacity must be made in her best interests ( section 1(5) MCA 2005 ); in doing so, I must take into account 'all the relevant circumstances' ( section 4(2) ibid.); iv) The MCA 2005 specifically provides for me to make the decision on PL's behalf in relation to life-sustaining treatment (see section 16(2) and section 17 MCA 2005 ); v) In making such a decision, I must not be motivated to bring about PL's death (section 4(5) MCA 2005 ); the question which I should ask (as I have at §3 above) is whether it is in PL's best interests to continue with the CANH? vi) The burden of establishing that the discontinuance of life-sustaining treatment is in a person's best interests lies with the person who asserts that it should be withdrawn: R(Burke) v GMC (OS Intervening) [2005] QB 424 at §213(o); vii) The question whether PL lacks capacity within the meaning of the MCA 2005 is decided on the balance of probabilities ( section 2(4) MCA 2005 ); similarly, where I make findings of fact, as I do throughout this judgment, I apply the same civil standard having regard to the guidance in Re B (Care Proceedings: Standard of Proof) [2008] UKHL 35 (see Lord Hoffman at §2). … 29. It would be wrong in my view to conclude that where the patient is not diagnosed as MCS or VS, a significantly different approach to the determination of the case should be taken. Quite apart from anything else, as is well-recognised, the diagnosis is often difficult, and may indeed change over time. So just as it would not necessarily follow that someone who is in a 'vegetative state' would be bound to have life-sustaining treatment discontinued, the fact that someone retains consciousness and can answer questions is not in itself a reason not to consider discontinuance of life-sustaining treatment: see An NHS Trust v A [2006] 2 Lloyds Rep Med 29 . It all depends, as I have indicated, on the individual facts, and every decision must ultimately be governed by what is in a patient's best interests. … 62. It is in PL's best interests that she be allowed to live in dignity, and die with dignity. As Baker J observed in Re M at §241, and I agree: "Anyone would wish the end of life to be as dignified as possible. In my judgment, however, there is dignity in the life of a disabled person who is being well cared for and being kept as comfortable and as free from pain as possible, and being provided with the maximum opportunity to extend their enjoyment of life that their disability allows."[55]In University Hospitals Birmingham NHS Foundation Trust v HB and FB [2018] EWCOP 39 Keehan J concluded, in the case of a woman who had suffered severe brain injury following a cardiac arrest and was then, a little over six weeks later, in a vegetative state, that:
“... key to the decision must be the wishes and feelings of HB and it is plain that administering CPR in the event of a further collapse and giving her, albeit a very, very small chance of life is what she would wish. In my judgment, at the moment, it remains in her best interests for that treatment to be provided to her.”
[56]In NHS South East London Integrated Care Board v JP & Ors [2025] EWCOP 4 (T3), Hayden J said: 15. In resolving a 'best interests' decision, the judge must always consider the broader evidential canvas and the imperative to determine, to the extent that it may be possible, what the protected party (P) would want for themselves. JP did not make any advanced decision, and so it is his family who must be the conduit by which his views are understood and articulated in the courtroom.”

Outline of the Submissions

[57]The applicant’s position in summary is that there are greater burdens than benefits to the ongoing treatment and as a result the NG tube should be removed as it is no longer in PK’s best interests. Mr Fullwood adopted the written and oral evidence of Dr Turner and Dr Hanrahan and submitted that treatment via the NG tube was more burdensome than beneficial. He relied on their detailed evidence which I have summarised above. He emphasised the fact PK is nil by month and that he experiences pain every day. He invited me to accept the application was properly brought and that I should accede to the application and make the declaration that the NG tube was no longer in PK’s best interests. Very appropriately he began his submissions by paying tribute to the dignity of PK’s family.[58]The second respondent opposes the Trust’s application. Mr O’Brien submitted the case was never a finely balanced one and this was particularly the case after the conclusion of the oral evidence. He highlighted Dr Christofi’s assessment of PK’s consciousness. He was critical of the lack of wishes and feelings and religious views in the Trust’s written evidence on best interests. He emphasised the fundamental human dignity apparent from PK’s interaction with his family. He highlighted the examples from the evidence. He stated part of who PK is as a man continues through his genuine engagement with his family, despite his disability. He submitted the response to Arsenal Football Club should not be trivialised. He highlighted PK’s religion. He highlighted PK’s past wishes as evidenced through the family’s evidence and in particular AB’s evidence about the TV programme. He submitted there was not extensive pain and that any pain was in any event well managed. He submitted there was no evidence PK was affected by the environmental factors on the ward. Lastly he submitted any burdens could ‘never’ be outweighed by his wishes and beliefs, given the current facts of PK’s case.[59]Ms Powell on behalf of the Official Solicitor largely agreed with Mr O’Brien’s case. The Official Solicitor opposes the grant of the declaration on behalf of PK. Ms Powell emphasised that – unlike some cases – PK had never been lost in these proceedings and he was central to every aspect of the case as a man, a husband, a father, a Muslim and a patient. A coda of her submissions was the right to self-determination and that what we wanted for ourselves in such situations has to be highly relevant to the issues the court has to decide. She emphasised the approach of the first instance court in Briggs but noted that unlike the facts of that case, the principles of respecting self-determination were not in conflict with the sanctity of life in these proceedings. She submitted that dying in a manner consistent with his Muslim faith was a very significant benefit for PK. She emphasised that the evidence demonstrates PK continues to be a husband, father, grandfather and Muslim. He has awareness and interacts. She emphasises his past wishes that life be extended and that he receive all treatment. She invited me not to set the bar too high in respect of past wishes as to how patients would want to be treated in the future. In particular she submitted it would erode the principle of autonomy if the court could only give weight to a patient who had accurately and in detail envisaged the circumstances of their future care and opined with a level of specificity. She submitted I should reject, therefore, Dr Turner’s evidence that PK had never envisaged being bed bound and fed by a NG tube. She noted the differing medical views on the burdens and that one doctor emphasised pain and another the nil by mouth regime. She suggested that demonstrated neither as quite so burdensome. She identified the magnetic factor as PK’s religious beliefs.

Analysis

[60]After the clinical and family evidence but before the expert’s evidence, Mr Fullwood invited me to make a judicial visit to PK at some point during the hearing. This matter had not been hitherto canvassed. It was strongly opposed by Mr O’Brien and Ms Powell. I concluded that a judicial visit would be of limited purpose having regard to the then Vice President of the Court of Protection, Hayden J’s, Practice Note. It could be confusing for PK. I have a detailed account of his situation and a note of a bedside visit made by Mr Michael Sherlock of the office of the Official Solicitor. Whilst there might be benefit to visiting PK to further involve him in the proceedings, this was outweighed by other factors. I declined the invitation.[61]All three parties accept PK lacks capacity to decide whether to receive treatment by way of artificial hydration and nutrition being delivered via the NG tube. I agree. The evidence is overwhelming and I make the necessary declaration. There is no prospect of PK recovering capacity. I turn then to the sole issue with which I am concerned: whether continuing CANH delivered via the NG tube is or is not in PK’s best interests. For the avoidance of doubt I checked with counsel and made clear I was not concerned with any subsidiary issues, such as ceiling of treatment or the location of treatment. All parties agreed I was only concerned to determine the one issue I have identified.[62]After having reflected on, and considered, the oral and written evidence from the clinicians and from the family, I have come to the clear conclusion that it remains in PK’s best interests for the NG tube to remain in situ and for him to continue to receive CANH. I can set out my reasons succinctly:a. I do not know what his present wishes are in respect of the NG tube.b. I accept his present feelings are, at the very least, influenced by the enjoyment he receives from being with his family. On balance I infer his feelings would likely dictate that he would want this to continue and for that enjoyment not to be cut short to the 1-3 weeks he would have left if the NG tube were removed.c. I unhesitatingly agree with the family’s evidence in respect of PK’s past wishes in respect of continuing treatment even in circumstances where pain and disability are present. His daughters’ and his wife’s evidence on this was clear. It was (rightly) not challenged by the applicant. The discussion around the television programme in July 2024 is a recent and neat example of PK’s wish to receive treatment. Furthermore, it sets out his past wish to receive treatment even if in pain or labouring under disability. I entirely accept Ms Powell’s submissions that I need not find a patient expresses a wish exactly mirroring their current circumstances and to do so would undermine autonomy. Such are the varied injuries or disabilities that might befall us and such are the range of treatments that medical advancement might offer us, to require a patient to articulate their precise circumstances would be to require an unnecessary level of prediction which is inconsistent with the autonomy this court seeks to protect.d. I find PK’s past feelings would include the sentiment that all life is of value and he would have felt anguish and disappointment should his life be shortened by medical intervention. His past feelings were to celebrate life and to enjoy it surrounded by his family.e. I also find his past and present beliefs are deeply rooted in his devout Muslim faith. This stands out from the evidence. He was and remains a devout Muslim. He continues to listen to surahs. His family’s evidence is that he believed all life is given by God and no steps should be taken to shorten life, other than those of his God. To that extent his family’s evidence is that PK would view it as wrong and contrary to Islam for me to authorise the removal of his NG tube. I reach this conclusion based solely on the evidence of PK’s family. I have read and considered the fatwa exhibited to AB’s witness statement. I have not had to determine how to give effect to this fatwa and as a result I make no findings as to Islamic teaching on end of life care and treatment. I am only concerned with PK’s understanding of Islam and the extent to which his own religious beliefs would comfort him. I agree with Ms Powell’s submission that there is a significant benefit to PK of living and dying in accordance with how he understands his devout Muslim faith. Unquestionably, therefore, PK’s Islamic beliefs would be likely (highly likely) to influence his own decision whether or not to continue with the NG tube if he had capacity.f. I also find PK’s past and present values are deeply rooted in his family life, as a husband, father and grandfather. This has profoundly shaped almost all of his entire adult life. The importance of fatherhood is emphasised by the fact he fathered six children. I accept the submission that notwithstanding his reduced consciousness, cognitive decline and physical disability, he remains, from his hospital bed, an active husband, father and grandfather. I accept Dr Christofi’s evidence and find that when PK is bright and alert, not tired, he is fully conscious and can interact, communicate (albeit non-verbally) and respond with his family. The value of family life is more than simply having contact with his visiting family members. It is a powerful role he continues to perform as the head of his family. I therefore find that the value of family life is a value that is likely to influence his decision whether or not to maintain the NG tube, if he had capacity. Spending more time with his family is indicative of maintaining CANH via the NG tube.g. I am required to take into account pursuant to section 4 (7) (b) the views of anyone engaged in caring for PK. I must take into account Dr Turner’s views and the wider views of the Trust. It is also convenient to consider Dr Hanrahan’s views. They are principally concerned with four burdens:(i) pain;(ii) the ‘nil by mouth regime’ and mouth care;(iii) his environment and(iv) the inherent indignity of personal care and being bed bound. The Trust is entirely correct to raise these issues and be concerned by them. I have weighed them carefully. First on pain, I find when immobile PK is comfortable and not in pain. Whilst it is hard to know whether there is underlying pain or discomfort, I accept the medical evidence it is well managed and he receives appropriate pain relief. Should that pain advance, the pain management regime can be altered. PK can grimace when in pain but is not observed to routinely grimace. The opposite is the case: and he is observed to be peaceful and comfortable. I accept he is in pain (particularly given his shoulder injury) if moved, but I find this is short lived and he is carefully and skilfully turned by experienced staff. He need not leave his bed when he has a CXR and this is not likely to be painful. Overall, I find there is limited pain and the highly professional staff take all steps through medication and otherwise to minimise any limited incidental pain. Secondly, the evidence on ‘nil by mouth’ was fairly divergent between Dr Turner and Dr Hanrahan. I do not think PK feels hunger. His dry mouth is ameliorated by the water given by pipette. He enjoys that. His mouthcare is well looked after. Thirdly, I accept Mr O’Brien’s submission that there is no evidence that PK is disturbed or negatively impacted by his ward environment or related sensory issues. Dr Hanrahan was correct to raise them but this was very much at the level of generality and not specific or rooted in the evidence to PK. Lastly the provision of intimate care and being bed bound are burdensome, but I also accept the family’s evidence that when PK had carers four times a day at home to help with toileting, he quietly accepted this. This is in line with his beliefs and values.h. I also factor in the fact PK is aware of his surroundings and his environment. I accept he smiles and responds when Arsenal Football Club is mentioned. I accept he can follow one stage commands. I accept he smiled when Dr Hanrahan made an error in Arabic. Therefore, I do not accept some of Dr Turner’s earlier written evidence on the state of PK’s consciousness and prefer Dr Christofi’s and the family’s evidence that he is conscious at times.i. I also place weight in the best interests analysis, on the views of his family who also care for him and/or are interested in his welfare. They all consider the NG tube should remain in situ.j. I also place weight on the fact PK’s own litigation friend, as a person interested in his welfare, opposes the Trust’s declarations.[63]Set out above are the essential and necessary section 4 MCA factors. I also place considerable weight, as I must, on the inherent sanctity of life. The removal of the NG tube is likely to reduce PK’s life expectancy, although I accept this is not certain and he is sufficiently frail that he might pass at any time.[64]I do not accept that which was hinted at in the evidence (but (rightly) not developed by Mr Fullwood) namely, that CANH was futile because PK’s functioning will not improve. The NG tube delivering CANH to PK is not futile in circumstances where it sustains his life. I accept the clinical evidence there will, in all likelihood, be no improvement from the October 2024 stroke, but it does not follow from that, that his treatment is futile.[65]I have not overlooked the fact that my conclusions depart from the evidence of the two experienced clinical witnesses. However, as is clear from the case law, whilst I must consider the expert and clinical evidence, the best interests decision is mine alone. I depart from the expert because I place greater weight on PK’s past and present wishes, feeling, beliefs and values than the expert does. I do not find the treatment futile. Its burdens do not (yet) outweigh the benefits I have identified above.[66]I have firmly in mind, many patients would rather quickly and quietly slip away from a life of artificial hydration and nutrition when bed bound, particularly in circumstances when they are both non verbal and subject to a nil by mouth regime. However, Aintree makes clear that the court’s assessment of best interests is rooted in a best interests analysis from the perspective of the particular patient in their particular circumstances. I therefore conclude that it is in the best interests of this devout Muslim, family man, who is often conscious and in limited pain, and who enjoys his family, to continue to receive CANH through his NG tube.[67]I thank counsel and solicitors for their expert assistance and ask that they draft an order to give effect to this decision.[68]I express my gratitude to the clinical staff at the Trust for their professional and humane care of PK and I wish him and his family well.

Cited in 1 later judgment