London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment)

I am concerned with a young woman, CD, who I shall call Lilia for the purposes of this judgment. As a judge assigned to the Family Division but also nominated to sit in the Court of Protection the facts of this tragic case bring painfully into the spotlight for me one dimension of the potential consequences of prolonged parental conflict for the children at the heart of a family dispute.

On 18 January 2021 Lilia tied a sheet around her neck, tied it to the taps of a sink and attempted to kill herself. She left a suicide note. Part of it reads

“I have always done my best to take care of you all, I’m so sorry for the pain this will cause you. You can be angry if you want, I understand. But most likely, you’ll just be devastated. I won’t be there to comfort you, I’m sorry. …….Please use the money to hire grief counsellors. It’s the last thing I can do for you. Please don’t blame yourselves, I’m the one that can’t cope in this world. I love you all so much.

Lilia was discovered by staff at the unit she was a patient at, CPR was administered, and she was taken to a London Hospital where she has remained in intensive care since. Her father commenced proceedings on 26 January 2021 seeking to be appointed her welfare deputy. On 15 February 2021 her mother applied to be appointed along with others as Lilia’s welfare and property and affairs deputy. At an initial hearing, Mr Justice Newton approved consent orders joining Lilia and appointing the Official Solicitor to represent her and for the NHS trust to file evidence.

The dispute between her parents that had dogged the lives of the family and most importantly their children at least since their separation therefore continued into this court but now on quite literally a matter of life and death. I simply note that as a fact; I express no views on who is responsible for the parental conflict; that is not the purpose of these proceedings, is not justiciable within them and would probably serve no purpose. Almost inevitably Lilia’s mother and father must have been asking themselves could they have done anything differently which might have altered Lilia’s trajectory in life which has led here. I doubt that they will find any answer to those questions and it is highly likely that the causes of Lilia’s psychiatric and psychological conditions and her attempt to end her life are complex and multi-faceted; it seems that Lilia’s psychological and psychiatric well-being was also significantly affected by the pandemic generated lock-down. Only the parents can have some sense of whether they might have done things differently and given Lilia a childhood less complex and troubled than that which she lived. They certainly owe it to their other daughter to try.

On 9 March 2021, the case came before me where I gave further directions and listed the case for final determination today. On 9 March 2021 I made a final declaration that Lilia lacked the capacity to conduct these proceedings and to make decisions as to her care and treatment. The evidence before the court then from Dr A Lilia’s neuro critical care consultant, Dr B, her consultant neurologist and an external second opinion from Dr Andrew Hanrahan Consultant in Neurorehabilitation and Clinical End of Life Care Lead at the Royal Hospital for Neurodisability, all agreed that Lilia had sustained extensive hypoxic brain damage as a result of the attempted suicide and was either in a persistent vegetative state or the lower level of a minimally conscious state. Her treating team supported by her mother and sister had reached the conclusion that it was not in

I therefore permitted the father to instruct an independent expert, Dr Chris Danbury, a consultant intensive care physician who subsequently saw Lilia and provided a report which confirmed the conclusions reached by the treating team and the second opinion. I listed the application for a final hearing before me on the 22 March 2021.

On that day I heard from Dr Hanrahan, Dr A , the mother and the father, read the bundle and heard submissions from counsel. At the conclusion of the day at 5.30pm I gave my decision with short reasons to be followed by a written judgment.

Lilia is aged 20. Her parents separated when she a child (aged 9 and when her sister was aged 6). In the last few years Lilia was a university student. Since starting her course, she lived either in her university accommodation or with her mother and sister, residing with them for a continuous period from March to 30 December 2020. Lilia had been troubled for some time and had been under the care of Dr S, Consultant Psychiatrist, from December 2019. On 27 and 28 December 2020, Lilia took a staggered overdose of paracetamol for which she was in A & E on 29 December. On 30 December 2020, she was admitted on a voluntary basis to a private psychiatric hospital for treatment for her depression and Post Traumatic Stress Disorder (PTSD). She had also been diagnosed with Emotionally Unstable Personality Disorder (EUPD) and had a history of self-harming behaviours. On 18 January 2021, whilst still an inpatient at the private psychiatric hospital and between observations Lilia tried to end her life. She was discovered and CPR was administered by the hospital staff. Lilia was taken by air ambulance to a London Hospital where she was admitted to the General ICU and, on 22 January 2021, to the Endoscopy ITU for ongoing Neuro Critical Care, where she has remained to date. The unanimous medical opinion is that Lilia has suffered a catastrophic global brain injury which has resulted in prolonged disorder of consciousness, from which she has not emerged and remains in a vegetative state.

The Trust’s clinical treating team considers that continuing treatment is futile concluding that with no prospect of any meaningful recovery, it is inimical to Lilia’s best interests to continue to provide life sustaining treatment or administer cardiopulmonary resuscitation in the event of a cardiac arrest. The clinicians at the Trust have concluded that continued respiratory support, provision of CANH and/or treatment and ICU interventions are invasive and burdensome for Lilia who has no real prospect of recovery. They are concerned that continued treatment would be unethical.

Lilia’s mother and sister agree with the clinicians caring for Lilia and do not wish for treatment to be continued. Based on her understanding of Lilia’s personality, values, active and varied lifestyle and her previous conversations with her, Lilia’s sister (“VP”) and friends, her mother considers that Lilia “would not want to live with a catastrophic brain injury in a vegetative or minimally conscious state deprived of that which gave her joy in life”

Lilia’s father considers that Lilia would wish for treatment to continue and believes that she would derive some pleasure from her existence, despite the prognosis and limitations that would inevitably exist. He indicated that:

The Mental Capacity Act 2005 sets out the statutory scheme in respect of individuals aged over 16 who lack capacity. Section 15 gives the court the power to make Declarations as to whether a person lacks capacity to make a specified decision and the lawfulness or otherwise of any act done or to be done in relation to that person. Section 16 gives the court the power to make an order and make the decision on a person’s behalf. Section 48 gives the court discretion to make an order on an interim basis and in particular if it is in the person’s best interests to make the order without delay.

Section 2(1) of the Act provides that a person lacks capacity if,

Section 1 of the Act sets out the principles applicable under the Act. Sub-section (5) provides that

Section 4 of the Act deals with ‘Best interests’

The courts have emphasised in a variety of contexts that ‘best interests’ (or welfare) can be a very broad concept.

Whether or not a person has the capacity to make decisions for herself, she is entitled to the protection of the European Convention on Human Rights. The fundamental principle of the sanctity of human life is enshrined in Article 2 of the Convention: everyone's right to life shall be protected by law. Further in the present context, Article 3 (protection from inhuman or degrading treatment) is relevant. In addition, it is an aim of the UN Convention on the Rights of Persons with Disabilities to secure the full enjoyment of human rights by disabled people and to ensure they have full equality under the law. In cases such as Lambert-v-France (20160 62 EHRR 2) the European Court of Human Rights has confirmed that the withdrawal of life sustaining treatment engages a State’s positive obligations under Article 2 but that permitting withdrawal and the circumstances under which it was permitted and how the balance was struck between the right to life and the protection of their right to respect for their private life and autonomy were within the margin of appreciation of states. The ECtHR retains a right to review whether in any particular case an individual’s Article 2 rights had been infringed or were within the margin of appreciation.

In Aintree University Hospital NHS Trust v James [2013] UKSC 67, the Supreme Court considered the first case to come before it under the MCA. Baroness Hale, giving the judgment of the court, stated at paragraph [22]:

At [44-45] it is said that the purpose of the best interests test is to consider matters from the patient's point of view. Where a patient is suffering from an incurable disability, the question is whether she would regard her future life as worthwhile. As was made clear in Re J [1991] Fam 33, it is not for others to say that a life which a patient would regard as worthwhile is not worth living. Likewise, dignity in life and death is a difficult subject which is not readily susceptible to objective definition. What one woman with her own subjective values and beliefs regards as undignified may not be regarded as so by another with a different set of values and beliefs. Thus, an intense focus on the patient concerned and understanding how they would likely view the situation is important rather than the imposition of some societal or cultural norm.

Where the patients’ condition may improve a best interests decision may be based on an evaluation which incorporates consideration of the ‘best case’ scenario. A person who is in a vegetative state and has no awareness can still suffer physical harm

Whilst the application of the law relating to giving, withholding or withdrawing medical treatment quires sensitivity and care, it is now clear and well-established. In Re A (A Child) 2016 EWCA 759, the Court of Appeal said:

The weight to be attributed to P’s wishes and feelings will differ depending on such matters as how frequently they are expressed, how consistent the views are, the complexity of the decision and how close to the borderline of capacity the person is. (See [35] RM, ITW v Z [2009] EWHC 2525(COP) [2011] 1WLR 344). In Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 the Supreme Court made it clear that the court below had been wrong to focus on what “the reasonable patient” would decide, and emphasised that the patient’s own wishes and feeling must be properly considered: “the things which were important to him… should be taken into account because they are a component in making the choice which is right for him as an individual human being.”

Several cases after Aintree have considered weight to be placed on the wishes and feelings of an incapable adult in the best interests’ assessment. In M v N (by her litigation friend, the OS), Bury Clinical Commissioning Group [2015] EWCOP 9 Hayden J (paras. 28, 30):

“…..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 interests’. 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. Mr Patel, counsel acting on behalf of M, has pointed to recent case law which he submits, and I agree, has emphasised the importance of giving proper weight to P’s wishes, feelings, beliefs and values see Wye Valley NHS Trust v B

The Court must take account of paragraphs 5.31 – 5.35 of the Code of Practice when making decisions about life-sustaining treatment:

“5.29

A special factor in the checklist applies to decisions about treatment which is necessary to keep the person alive (‘life-sustaining treatment’) and this is set out in section 4(5) of the Act. The fundamental rule is that anyone who is deciding whether or not life-sustaining treatment is in the best interests of someone who lacks capacity to consent to or refuse such treatment must not be motivated by a desire to bring about the person’s death.

5.30

Whether a treatment is ‘life-sustaining’ depends not only on the type of treatment, but also on the particular circumstances in which it may be prescribed. For example, in some situations giving antibiotics may be life-sustaining, whereas in other circumstances antibiotics are used to treat a non-life- threatening condition. It is up to the doctor or healthcare professional providing treatment to assess whether the treatment is life-sustaining in each particular situation.

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 decisionmaker 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.

5.34

Where a person has made a written statement in advance that requests particular medical treatments, such as artificial nutrition and hydration (ANH), these requests should be taken into account by the treating doctor in the same way as requests made by a patient who has the capacity to make such decisions. Like anyone else involved in making this decision, the doctor must weigh written statements alongside all other relevant factors to decide whether it is in the best interests of the patient to provide or continue life-sustaining treatment.

5.35

If someone has made an advance decision to refuse life-sustaining treatment, specific rules apply. More information about these can be found in chapter 9 and in paragraph 5.45 below. 5.36 As mentioned in paragraph 5.33 above, 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 lifesustaining treatment is in the patient’s best interests.”

Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient’s best interests. In particular I must consider the values and beliefs of Lilia as well as any views she expressed when she had capacity that shed light on the likely choice she would make if she were able to and what she would have considered relevant or important. Where those views can be ascertained with sufficient certainty, they should carry great weight and usually should be followed; as they would be for a person with capacity who did express such views.

On 18 January 2021, Lilia was found by staff. CPR was attempted and paramedics attended, she had a low Glasgow Coma Score (GCS), incompatible with spontaneous breathing and life and she was taken by ambulance to a London Hospital and admitted to the major trauma unit. It was reported that she had suffered prolonged hypoxia, for a maximum period of 20 minutes – this being between observations.

Dr AA, Lilia’s treating Neurocritical Care Consultant at the Trust sets out the details of her treatment so far. She updated that in her oral evidence; telling me that there were signs that Lilia had an infection and that her tongue injury was showing some signs of healing but might need debridement. In short, Lilia has undergone numerous investigations and interventions (including MRI and brain imaging scans, EEG reports, blood and urine tests, neurophysiology, pharmacy reviews, microbiology advice, nursing therapy and medical care from other specialities and neurosurgical observations and testing) to understand the nature of her injury and maximise her potential for recovery.

Despite coming off sedation on 24 January 2021 there has been no reported spontaneous or induced behaviour to suggest Lilia has awareness of herself or the environment she is in (on ITU) - save that twitching, jerking and movements have been seen – for example, it was noted on 30 January 2021 that she had begun to demonstrate flexion of her arms to a painful stimulus, whilst previously the clinicians had not been able to elicit any motor responses. Further observations noted shivering, leg twitching and abnormal movement which were considered to be “neither seizures or myoclonus, but rather sub-cortically driven phenomena related to her significant hypoxic ischaemic encephalopathy”

She currently receives the following treatment;

Dr B, the treating neurologist assessed Lilia on 15 February 2021 and 2 March 2021 and concludes as follows

Both Dr A and Dr B conclude that Lilia will have a reduced life expectancy and require ongoing complex interventions such as ongoing ventilatory support including a tracheostomy, physical care including CANH, probable percutaneous endoscopic gastrostomy (tube feeding into stomach)_ catheter and incontinence support, washing, positioning and physical therapy to avoid bed sores, treatment for ongoing chest and urinary infections.

It is the treating team’s belief that there is no prospect of significant neurological recovery; the best would not involve regaining consciousness but possibly some awareness which is more likely to result in an increased perception of pain or discomfort. The Trust’s belief in terms of Lilia’s approach is that

“We do not believe Lilia would consent to any of these interventions to prolong life if she were in a position to participate in the decision. It is therefore the strongly and universally held view of the multidisciplinary team that continuing such treatment of Lilia is morally, ethically and medically unjustifiable”.

Dr A sets out a detailed and staged plan as to how life-sustaining treatment would be managed and what palliative care would be administered. She said:

Dr A says that at all times preserving her dignity is a priority. Although she has no awareness, she would have medication to manage the physiological symptoms which might arise. Wider interests include the family, some distressful appearing symptoms are managed to alleviate distress of family. Renal failure usually brings about death after a couple of weeks and that is managed on the ward or a specialist unit; that is usually peaceful.

Dr Hanrahan’s independent second report and his evidence sets out the following.

I concluded that his opinion was that it is most unlikely that she will experience any awareness of her condition because that would be so far beyond the level of improvement in consciousness that she is likely to experience. He said though we cannot know, the science and understanding of how the brain functions as a network with the need for each part to talk to the other it is highly unlikely that those processes would in her case be sufficient to engage functional awareness; if she reaches any it would be a much lower level of awareness and she is unlikely to experience even the lower levels of arousal and awareness.

I gave the father permission to seek a further opinion from Dr Danbury. He was not called to give evidence. His conclusions are as follows.

There is no Advance Decision which sets out her wishes in this situation.

Dr S confirmed that Lilia named her mother as her next of kin. However, she did say her father had been surprisingly supportive when she rang to tell him of her admission. She had recurrent suicidal thoughts whilst also stating she did not want to die earlier in her treatment but spoke about how hard recovery was compared to death. She found life hard and could not see the point of it at times when distressed by her thoughts.

In her counselling session shortly prior to her attempt to take her life she said that life scared her as it is full of pain, but death scared her too. When she spoke about attempting to kill herself, she acknowledged that brain damage was a possible consequence and that was bad. She told her counsellor that she was pathologically selfless.

Lilia’s mother provided a summary of all that Lilia enjoyed in life, ranging from outdoor pursuits, appreciation of nature, a passion for a range of arts and crafts, for reading, for travel, for music and in particular for Japan, encompassing its language, music, and culture, including pop culture. The mother emphasised the high level of Lilia’s academic ability and intelligence, her kindness and compassion to others, her close friendships and in particular the very close relationship she enjoyed with her sister. She said that “Lilia is one of the sweetest, kindest, thoughtful people you will ever meet. She would not want to live with catastrophic brain injury in a vegetative/minimally conscious state deprived of that in which she found joy in life.”

The mother considers that Lilia felt overwhelmed by the demands her father placed on her and her letters to her father and extracts from her notebook illustrate some of the difficulties. She wrote;

“To Dad. For some time, you’ve wanted to understand how I feel about you, and why our relationship has deteriorated. So I’m going to explain how I feel. As a child, you would tell me many things about the animosity between you and mum that were very setting for me. Serious conflicts with terrible implications. Conflicts that I never needed to be involved in, that should have been kept between adults. You were frustrated, you wanted me to understand how you felt. But I wasn’t your confidant, your friend or your counsellor. I was just a child, your child. All I wanted was to be protected…… When I raise a concern or say I don’t like what you are doing, you assume the thought has been planted there by someone. You assume my feelings are not my own and immediately try to hunt down the puppet master instead of respectfully accepting and validating my feelings.”

From her statement and the attendance note of the Official Solicitor I extract the following.

The Official Solicitor has obtained statements from two of Lilia’s friends. I set out below some of what I consider to be the relevant extracts

Between them her maternal Grandparents made the following observations

The father’s position is that he believes that life is precious albeit he does not believe it would be appropriate to maintain life-sustaining treatment for Lilia if he thought that she did not want that. He says that his belief is that she has made better incremental gains than the clinicians had originally anticipated. His understanding of his daughter is that she believed passionately in the preservation of life and intrinsically valued life more than most and that she would want to continue her life and be cared for by her family

He believed that her emotionally unstable personality disorder and her ongoing medical treatment needed to be factored into her attitude to life and her suicidal ideation. In the circumstances it was difficult to know what her past wishes would be as to life in these circumstances.

The hospital recorded the father’s views as follows;

In the Best Interests Meeting he also expressed his views on Lilia’s wishes

In his evidence he emphasised that he thought that Lilia would value a shared experience with family members and that he thought there was some benefit to her from this if she improved to an MCS-.

The medical evidence is essentially unambiguous in terms of the extent of Lilia’s brain injury. She has suffered catastrophic hypoxic brain damage which has left her in vegetative state. Thus, the diagnostic and functional criteria establishing her lack of capacity are agreed. The evidence demonstrates that the parts of the Lilia’s brain that made her who she was have been profoundly damaged most importantly in their connectivity or networking capacity which is central to who we are and the brain’s ability to interpret the senses, to process information and to generate responses. Whilst Lilia’s brainstem is still functioning even that has sustained some damage and whilst it may be capable of maintaining the basic functioning of the body, including the drive to breathe (although that appears to be compromised to some extent according to Dr A A) that is continuing the life of Lilia’s body but not Lilia as an individual personality. Dr Hanrahan was clear that her current condition is consistent with her having no awareness of anything at all even the most basic sensations such as pain. Evidence about her moving her limbs or biting her tongue are not responses to external factors but are involuntary movements.

It is also clear on the balance of probabilities that the prognosis is that she will remain in this state. The best prognosis – rated by Dr Danbury at less than 15% chance is for an increase to a minimally conscious state (MCS) minus. Dr Hanrahan both in his evidence and during the best interest discussion expressed a disinclination to discuss the prognosis in percentage chances. His evidence was clear that the prognosis for patients with brain damage arising from anoxia is generally at the lowest end of the spectrum for improvement because of the nature of the injury concerned and that the greater the period of time that passed without neurological change (he was reluctant to describe it as improvement) the greater the likelihood that the current condition would persist. His evidence, which the other clinicians and experts aligned themselves with was that on the balance of probabilities and as I understood his evidence a high balance of probabilities was that Lilia would remain in a vegetative state.

The evidence also emphasised that even were that prognosis to be confounded and that Lilia were to move along the spectrum from vegetative state to minimally conscious state to describe that as an improvement had the potential to be misunderstood. A neurological change could include some very limited reflex movement but that would not indicate that Lilia was developing awareness. Dr Hanrahan was clear in his oral evidence and indeed this is consistent with the overall effect of the other expert evidence that were Lilia to demonstrate neurological change that moved along the spectrum from vegetative state to MCS minus this would not mean that she had regained some sort of awareness which might lead her to an appreciation of her condition. What this sort of neurological change might involve was Lilia’s brain receiving some signals from her body at a very basic level. The evidence was that a neurological change was most likely to involve the brain sensing something internal to the body; a very primal or basic functions such as awareness of the bladder or bowel being full or pain from a pressure point. Dr Hanrahan also explained that were a neurological change of this sort to occur the (as he described it) bandwidth available would be narrow and would be taken up by such internal and basic interpretation of sensations. He was clear that this should not be confused with any higher functioning of the connected brain. He gave the example of Lilia’s ear being able to hear and perhaps there being some auditory reflex but this should not be confused with listening which required an association provided by the connected brain to the information that the ear might be seeking to provide and that this was highly unlikely. He accepted that one could not know for certain what Lilia could experience because no one in a prolonged disorder of consciousness could ever describe it. As he said if you could remember anything you could not have been in a prolonged disorder of consciousness; the two were mutually incompatible. However, he was clear that in terms of probabilities or in applying both theoretical and clinical understanding of the way the brain worked and the damage which it had sustained it was completely inconsistent with any experience or awareness of anything other than the most basic internal physical sensations. He explained that some individuals might appear to respond to familiar voices or music but this would not be because they had any conscious awareness but rather because sound could leave an imprint in the network of the brain but such a response was sub- cortical which I understood to mean a physical response like an auditory response to noise rather than indicative of awareness or appreciation of the connected brain.

Thus, the totality of the evidence points to the conclusion on the balance of probabilities that Lilia will remain in a vegetative state and that this could be for a period of many years. There is a remote possibility of neurological change that would place her in the minimally conscious state minus, but this would involve neurological change that would not result in Lilia’s becoming aware of anything other than the most basic physiological sensations. There may even be an unquantifiable possibility of her demonstrating neurological change that would move her along the spectrum into the MCS plus; they cannot be completely ruled out because nothing is impossible. However even this seems to me to be largely theoretical and illusory possibility would still not bring her into the category described by Dr Hanrahan of neurological consciousness functional consciousness.

The father considered that Lilia if she improved to MCS- or even more so if she moved to MCS + that she might have the capacity to gain some benefit from being in the company of her family or having music played to her or the familiar voices or being held by them. I can understand why he would wish to believe this possible. It must be almost impossibly difficult to contemplate the annihilation of the person that Lilia was and thus one clings to a hope that because one cannot know for certain that this allows for the possibility of Lilia continuing to have the capacity to exist in some familiar domain. I was left unsure at the conclusion of his evidence whether the father simply did not understand the effect of the evidence of the treating clinicians, Dr Hanrahan and Dr Danbury or whether it amounted to a conscious refusal or subconscious inability to accept the overwhelming weight of the evidence because it was inconsistent with what he wished to believe. Regrettably though, his position is not supported by the medical evidence and his insistence on maintaining the possibility of Lilia regaining some awareness of any sort which would be recognisable to who she was before, is to deny the reality that confronts his daughter. To make decisions on the basis of his own wish as to what he wants her position to be rather than on the basis of what her position actually is, inevitably is likely to lead to flawed decision making.

Thus the evidence establishes that the likelihood for Lilia is that she will remain in a vegetative state entirely unaware of anything; her body will live but no residual part of who she was as a personality will return, nor even will she have the ability to experience the most basic sensations that a body can be aware of such as pain or discomfort, still less the more developed sense of the touch of a warm hand. She will never be capable again of enjoying the beat of the music she loved, of appreciating the majesty of a giant redwood, being entertained by anime or feeling a loved one hold her hand and speak to

However, to remain alive will on a balance of probabilities require on-going medical interventions. A tracheostomy, a PEG to enable her to be fed, she will likely require anti-biotics to deal with chest or urinary tract infections. Dr A said that she is currently experiencing a raised temperature and her bloods suggest an infection. She will need washing and moving. Although she may not be aware of these treatments and may not suffer discomfort whilst in a vegetative state this does not mean they are not being done to her and certainly in respect of some aspects are causing physical injury and harm to her. How would she feel about this? How would she feel about the possibility of her life encompassing some basic sensations including pain or discomfort or better but even then with medication which would assist with those negative sensations also probably eliminating any possible positive aspects.

In contrast how would she feel about the discontinuation of life sustaining treatment. Dr AA has set out both her prognosis for Lilia and the palliative medical treatment that might be required. Although she identified that Lilia sometimes requires assistance from her ventilator to support her breathing she thought on balance that Lilia would maintain spontaneous breathing if taken off the ventilator and would not die suddenly but rather her body would slowly pass into renal failure and eventual death as a consequence of her not receiving nutrition or hydration. This might take 3-4 weeks during which she would be in receipt of opiate or benzodiazepine medication to relieve the discomfort or pain. How would she likely feel about this?

It is not possible to know what Lilia would want for herself now. There is no categorical statement from her upon which heavy reliance can be placed. She has not made an Advance Decision. No one had an in-depth conversation or repeated conversation with her about the profound issues engaged here which would shine a spotlight on her views.

However, there are many sources of information about her character and her views that throw beams of light on what her views are likely to have been and which ultimately for me appear to illuminate them to my mind clearly and reliably. Save for the father’s interpretation of her views on the absolute sanctity and value of life, the sources of light all point to Lilia’s likely wish being not to be given treatment to prolong her life for she would see it as a life without quality or purpose and a burden to her and to those she loves. Those sources show that she loved experiences and sensations; the beauty of the natural world, culture and music, caring for others. They also show that she preferred to care for others than be cared for by others. She appears as a young woman of spirit and independence.

The father’s interpretation of the value she put on the life of all creatures, whether sentient or not and her unwillingness to take life may be an accurate account of his perception of her views. They are views which are commonly encountered and entirely understandable. However, his extrapolation from them that Lilia would under no circumstances have wished for her life to be taken (as the father would put it) or for treatment not be given and to be withdrawn leading to her death is not in my view a reliable one. Her respect for the life of other human beings and her respect for the life of even the simplest of living creatures seems to me to be an aspect of her caring and

On the contrary the evidence of her own actions in December 2020 in taking a staged overdose and in January in attempting to end her own life support the conclusion that she considered that the continuation or termination of her life lay in her hands. The evidence from the private psychiatric hospital, in particular her therapy session on 18 January 2021 and the terms of her suicide note give no hint at all of her feeling either that it was not in her power to end her life or that there was some principle to which she adhered which made ending her life inconsistent with it.

Rather the evidence suggests that Lilia was a young woman who had struggled with the balance of positive and negative in her life for a considerable period of time and in particular in the latter part of 2020 and the first 18 days of 2021. The evidence supports the conclusion that her own perception of the balance of good and bad in her own life fluctuated but that by 18 January 2021 the balance had moved clearly into the negative saying that she could not cope with the world anymore. The evidence supports the conclusion that Lilia was considering where the balance lay for some period of time before 18 January 2021.

It also emerges from the evidence of Lilia’s communications with her father and the evidence of her sister that Lilia did not feel that the father understood her but sought to reframe her expressed views to fit with what he wished to believe. Her decision to prevent him having access to information about her medical treatment also suggests she wished to distance herself from him, did not wish to share her most personal situation at this time and that is consistent with the other evidence of how she had reduced her contact with him in recent months. The evidence of a more positive telephone call in early January does not come close to demonstrating a change in Lilia’s then attitudes to her father. Thus, in evaluating the fathers evidence of his understanding of Lilia’s likely wishes and her views or beliefs which bear upon the decision seems to me one has to bear in mind that Lilia thought that the father did not understand her or wilfully misunderstood her. I also bear in mind his apparent inability to understand or accept the import of the medical evidence.

I therefore conclude that the weight of the evidence demonstrates that Lilia did not view her own life as sacrosanct but rather that she viewed it as within her right to make decisions which she acted on 18 January 2021. Thus, I do not consider that the fathers evidence that Lilia would have wished to remain alive as a matter of principle is established. Although he may be right that the question now is whether Lilia would wish to live the life now available to her rather than be dead, rather than whether she would wish to live the life previously available to her rather than that which is now available to her, once one has reached the conclusion that Lilia did not regard life as sacrosanct one then moves into a consideration of what her likely wishes would be in respect of continuing this life or discontinuing treatment and passing from this world.

The mother placed significant reliance on Lilia’s conversations with her friend about not wanting to live in a coma. She also placed considerable reliance on Lilia’s own decision to end her life. Lilia is recorded as having said to her therapist that causing brain damage and being in a coma was bad. The father cautions against placing too much reliance on either the suicide note or Lilia’s actions, on a passing conversation with a friend or limited comments to the therapist. It seems to me that what Lilia said to her friend and her observations to her therapist are far from determinative on the important issue of what her wishes would be in the current situation. A passing conversation arising out of a shared experience of a television programme is of some weight as well in that there was no suggestion from Lilia that she viewed life as sacrosanct, but this was not a prolonged or in-depth conversation arising out of some real-life event which required her to consider one of life’s profound existential questions. Equally her suicide note was written and acted upon at a time where plainly the balance had moved unequivocally into the negative for Lilia but I do not think one can automatically extrapolate from that that she would not wish to continue with lifesustaining treatment now. Nor her saying to the therapist that being in a coma with brain damage was bad. However, when one adds those to everything else that I know about Lilia it is my conclusion that a clear likely wish can be discerned. Lilia’s quality of life seems to have focused in significant measure on experiences and sensations. I do not get a sense that Lilia regarded the interchanges of her human relationships as the most important aspect of her life; perhaps her relationships with her mother and father and even her sister had been complicated. She clearly valued them and her friendships and her estrangement from her father may not have been long-term. I do not have sufficient information available to me to draw any firm conclusions but the impression from what she has said about her childhood experiences was that it was marred by conflict between those who should have been the most important figures in her life; her mother and father. It seems likely that her enjoyment of experiences and sensations may have been some escape from the complex thoughts which troubled her. Her inability now to enjoy any of the experiences and sensations which were a significant component of the positive side of her balance sheet would I am sure weigh heavily with her. Being trapped inside her body and unable to access the experiences which seem likely to have been an escape or release for her would be viewed by Lilia as intolerable. As an independent young woman, I am also sure that she would find the inability to take decisions or to act upon them a significant negative. Her concern for others, most poignantly expressed in her suicide note would I am sure have guided her wishes and it seems inconsistent with her nature for her to adopt a decision which would of necessity mean that mother, her sister, her father her grandparents and friends would continue to live their lives knowing of her attenuated existence and perhaps making her the centre of their patterns of life with all of the limitations that would place upon their ability to live their own lives rather than lives which revolved around her. If she was, as she seems to have been, a person who put others before herself I have little doubt that in the balance that she might have undertaken she would have concluded that it was far more important that

Taking into account all of the medical components of her situation and what I conclude are her likely wishes I’m satisfied that she would not have wished to continue lifesustaining treatment but that she would have opted for its cessation and for the implementation of a palliative care regime which would enable her to pass from this life leaving her family to make the best that they could of theirs. I do not believe that she would have wished to live the attenuated existence of a vegetative state or a minimally conscious state minus, to endure the profound limitations on her autonomy including what I believe she would have perceived as the indignity of being cared for in every component of her personal care, unable to take decisions or act on them, to impose the burden of her attenuated life on her family and friends. I believe she would have wished to end the treatment.

Factoring in objectively the medical evidence of her current condition and prognosis, even allowing for the limited and remote possibilities of neurological improvement and the absence of any meaningful quality of life, the harm that further medical treatment will inevitably involve (albeit probably not with any awareness for Lilia), what I’m sure would have been perceived by Lilia as the indignity of her condition and her need for lifelong physical care, and all of her wishes as analysed above, the views of her family and friends, the opinions of all her treating team and the independent experts, I’m satisfied that it is not in Lilia’s best interests to administer life-sustaining medical treatment but rather that it is in her best interests to implement a palliative care regime the consequence of which (but not the aim) will be the end of her life but that I think will be an ending to her story essentially of her choosing and one which I feel confident she would endorse.

This is my judgment.