It is difficult to do better in introducing the decision in London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment)  EWCOP 23 than to use the words of the judge in the case, Williams J:
1. 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.
2. 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.
3. 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.
4. 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.
When the matter first came before Williams J, the evidence before him 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, was 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.
Lillia’s treating team supported by her mother and sister had reached the conclusion that it was not in Lilia’s best interests for life sustaining treatment, specifically clinically assisted nutrition and hydration (“CANH”), to continue to be provided. Indeed, the Trust’s real position (although not pushed to its logical conclusion) was not just that treatment was not in her best interests, but in reality was futile, considering 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” (paragraph 9).
Her father believed that there was some chance that her condition would improve and wished to seek a further opinion. He also believed that Lilia’s wishes would be to continue to live.
Williams J 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.
Directing himself as to the law, Williams J made the following observations about the best interests test:
17. 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.
18. In Aintree University Hospital NHS Trust v James  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 :
‘ Hence the focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.’
‘ 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 towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.’
19. 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 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.
20. 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.
25. 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.
Having considered the substantive law and the medical evidence, Williams J was satisfied that:
54. […] 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.
Williams J dealt with the position of Lilia’s father thus:
55. 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.
Williams J then turned to a sensitive analysis of whether it was possible to identify Liliia’s wishes and feelings as regards future treatment:
56. 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 her. Her body and thus to that extent Lilia will be alive. Life is of value. Lilia appears to have been an atheist and so probably would accept this life is her only life. What would Lilia likely think about that life? What would she think about a life with somewhat more neurological activity – an MCS minus life or even an MCS + life.
57. 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.
58. 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?
59. 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, Williams J continued (at paragraph 60): “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.” Williams J then detailed those sources of information, before reaching the conclusion that:
67. 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 life-sustaining 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.
Williams J therefore held that:
68. […] 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.
The family tragedy played out in this judgment is one beyond editorial comment; however, the judgment is noteworthy for the acute and sensitive focus upon the young woman at its heart, personalised with a (fictional) name, and brought vividly off the page by Williams J’s literary depiction of her. I use the term ‘literary’ here because there is a real sense in this judgment is intended to serve as Williams J’s tribute to Lillia, reminding us of the many rhetorical purposes which judgments serve.
There is, perhaps, something of an irony here, though, because one purpose that the judgment did not serve was to identify that, in fact, this was a situation in which there was arguably no best interests decision to take at all. As in other cases recently (see, in particular, the decisions in Re NZ and Re TW), it appears that what the medical team was really saying was that they considered that further treatment was clinically inappropriate. In the circumstances, and given the difference of opinion as to whether Lilia would have actually asked for this treatment to be continued, it is perhaps understandable that Williams J focused upon the question of what she would have wanted. But it is hugely important to emphasise that if clinicians approach the court on the basis that a treatment is not in a patient’s best interests, this is implicitly telling the court that they will provide it if the court comes to a different view. If they truly believe that further treatment is “unethical” (the word used here) it is arguably their ethical duty, both to the patient, but also to the team as a whole, to tell the judge that they are not prepared to provide it.
Williams J’s – relatively brief – discussion both of the potential for harm to be suffered by a person even in a vegetative state with no awareness, and of the limited assistance to be gained by recourse to ‘dignity’ sits interestingly alongside the decision of the Court of Appeal in the case of Pippa Knight  EWCA Civ 362, handed down just a few days previously. In that case, concerning an appeal from a decision about life-sustaining treatment in respect of a young girl, Baker LJ rejected as “plainly wrong” the proposition that no physical harm can be caused to a person with no conscious awareness:
60 […] As I observed during the hearing, the law clearly recognises that physical harm can be caused to an unconscious person. In the criminal law, for example, an unconscious person can suffer actual or grievous bodily harm and it would be no defence to a charge under the Offences against the Person Act 1861 that the victim was unconscious. The judge was in my view entirely justified in citing examples from the law of tort in which it has been recognised that physical harm can be caused to an insensate person. As Mr Mylonas observed, if the proposition advanced on behalf of the appellant was correct, there would be no limit on a doctor’s ability to perform any surgery upon any insensate patient. For my part, I fully endorse the judge’s reasoning for rejecting the appellant’s proposition at paragraph 76 of his judgment.
61. The judge’s approach is entirely consistent with the observations of my Lady in Re A. By focussing on the presence or absence of pain and failing to recognise the physical harm which an insensate patient may suffer from her condition or treatment, a decision-maker may fail to consider the child’s welfare in its widest sense. Furthermore, so far as I can see, there is no support for the appellant’s proposition to be derived from the judgment in Raqeeb. That case was decided on very different facts. Unlike Pippa, Tafida retained a minimal awareness, was in a stable condition, was not suffering life-threatening episodes of desaturations, and had received ventilation for a significantly shorter period. The level of support required by Tafida was not of the same degree of complexity and there was unanimity amongst all the doctors, including the treating clinicians, that she could be ventilated at home. Her condition and the treatments she received for it did not give rise to physical harm on the scale endured by Pippa in this case. In cross-examination, Dr Wallis acknowledged that the treatments given to Pippa were “on a spectrum of burdens”. Furthermore, as demonstrated in the passages cited above from MacDonald J’s judgment, the arguments advanced on behalf of the hospital trust in that case to the effect that it would be detrimental for Tafida to undergo the treatment proposed by her parents notwithstanding the fact that she could feel no pain were expressed in terms of dignity. In the present case, the Trust has not presented its arguments in those terms and the judge concluded that it would not assist him in this case to adopt any supposedly objective concept of dignity. In any event, it is worth noting that the argument presented to MacDonald J, as quoted in paragraph 176 of the judgment in Raqeeb,
“that even if Tafida feels no pain, further invasive treatment over an extended period of time will impose an unacceptable burden on her human dignity, which burden will be increased as she develops further debilitating physical symptoms”
acknowledged that there would be “physical symptoms” which would be “debilitating” even though she could feel no pain.
62. The judge was entitled to conclude Pippa could experience physical harm from her condition and medical treatment notwithstanding that she has no capacity to feel pain and no conscious awareness. […]
In respect of “dignity,” Baker LJ observed that:
97. […] Although it was mentioned in the course of the judgment in this case, it was not a factor which the judge included as a reason for his decision.
98. On behalf of the appellant, Mr Sachdeva observed in oral submissions that dignity was not, as he put it, the touchstone. In his submissions on behalf of the guardian, however, Mr Davy made extensive submissions about the concept of dignity and its role in decisions concerning the withdrawal of life-sustaining treatment. It was his contention that, in addition to the principle of the sanctity of life and principle of self-determination, the court in these circumstances should take into account the principle of the respect for the dignity of the individual. He submitted that the judge was correct to identify amongst the factors relevant to his decision both the burdens arising from the intensive and intrusive treatment required to keep Pippa alive and her grave loss of function and the potential benefits to be gained from treating her at home surrounded by her loving family rather than in hospital. Mr Davy submitted, however, that the real justification for including these burdens and benefits is that they are both aspects of the principle of respect for the dignity of the individual. He argued that this principle requires respect for an individual’s value as a human being and encompasses both their psychological and physical integrity being deemed worthy of respect. Somebody who has no awareness of their circumstances can still be afforded dignity, or treated with indignity, by the manner in which they live and the way in which they are treated. Mr Davy submitted that, in Pippa’s case, there is an innate indignity and burden associated with the intensive and intrusive treatment required to keep Pippa alive and her grave loss of function. Alternatively, if she were able to be cared for at home surrounded by her loving family, this would be a less undignified existence than her current care within the PICU. Notwithstanding these submissions, however, the guardian concluded that, when all the factors relevant to the decision are taken into account including the three principles of sanctity of life, self-determination and respect for the dignity of the individual, the potential benefit to Pippa from being cared for at home did not come close to tipping the best interests balance.
99. Mr Davy developed these arguments by reference to a number of reported authorities, in particular the decision of the House of Lords in Airedale NHS Trust v Bland AC 789. I commend him for the thought and care with which he has prepared those submissions and I intend no disrespect to him in saying that I do not think it necessary or appropriate on this occasion to embark upon a detailed analysis of the arguments he deployed. The judge declined to attach any weight to the concept of dignity in reaching a decision about Pippa’s best interests, observing (at paragraph 86):
“there is obviously a high degree of subjectivity involved in describing someone’s life or death as having dignity”
and cited authorities in which the protection of dignity had been deployed to support decisions both to continue treatment and to withhold it. He concluded:
“given the very different ideas expressed to the court about what would constitute dignity for Pippa in life and in her dying, I shall not presume to adopt some supposedly objective concept of dignity to determine her best interests.”
Neither the appellant nor the Trust has sought to argue that he was wrong in adopting that course.
100. Other judges, dealing with cases involving different circumstances, have taken a different approach: see for example MacDonald J’s decision in Raqeeb. In a future case, it may be necessary for this Court to address arguments akin to those put forward by Mr Davy about the role played by the concept of dignity in decisions of this sort. That necessity does not arise on this appeal.
It would appear that Williams J is in the camp of those with Poole J (and, arguably, Baker LJ) finding that dignity is a concept that obscures as much as it illuminates. Katie Gollop QC has given some very interesting thoughts on the Transparency Project’s website about this issue. On balance, and having fought ‘dignity wars’ in different contexts:
- I still require some persuasion that it is necessarily the answer to really difficult questions; but
- The way in which the dignity of the individual in question is spoken about will be very revealing of the person doing the talking.