Strand, London, WC2A 2LL
B e f o r e :
VICE PRESIDENT OF THE COURT OF PROTECTION
| NORTH WEST LONDON CLINICAL COMMISSIONING GROUP
|- and -
(By his Litigation Friend, the Official Solicitor)
Ms Debra Powell QC (instructed by the Official Solicitor) for the Respondent
Ms Amelia Walker (instructed by RPC Solicitors) for the Royal Hospital for Neuro-disability
Hearing dates: 15th July 2021
Crown Copyright ©
Mr Justice Hayden :
"16th of August [year not stated but presumed to be 2018] regarding end-of-life care with the participation of brother [E], palliative care team and locum GP. The brother expressed that under new laws for palliative care, the life should not be sustained and all hydration, nutrition and medications should be stopped. The rest of the family does not agree with this new decision and therefore [GU] will continue to be cared by nursing staff. An advance care planning form was requested by the brother according to the plan in medical notes from palliative consultant."
"I have concluded that he has been unaware of himself or his environment from the outset, and that there is no prospect of any recovery. He may live in this state for up to 10 years. I have reviewed the evidence from family members, which show convincingly that his past wishes would have been that he should not continue with life-sustaining medical treatment. I have reviewed the statement from the dissenting eldest son, and this shows that he has a moral objection, personally, to the withdrawal of food and fluid from his father. He is not disputing any of the factual evidence. (my emphasis)
On this basis I have concluded that it is not in the best interests of [GU] to continue with clinically assisted nutrition and hydration. I am satisfied that the local team has the necessary expertise to provide all appropriate palliative end-of-life care."
"[GU] demonstrated a profound disorder of communication and did not show evidence of communicative intent verbally or nonverbally. [GU] was unable to comprehend, express himself by any means, and remains fully dependent on others to anticipate his needs and act in his best interests."
"[GU] demonstrated overall low responses to sensory stimuli. He demonstrated mainly reflexive responses to auditory stimuli, such as opening eyes and shoulder elevation when sound presented on both sides. He has demonstrated no response to visual stimuli on three out of four occasions and reflexive on one occasion. He demonstrated reflexive responses to tactile stimuli on two occasions. Also, he demonstrated a withdrawal response on one occasion. [GU] demonstrated no functional communication or functional use of his arms within the art group sessions."
"I conclude that, beyond all reasonable doubt, [GU] has no awareness of himself or his environment."
That conclusion could not be bleaker nor less equivocal. There is nobody involved in GU's care who disagrees with it. The family also accept it. E goes further and roundly endorses it. Nobody has suggested that there should be further investigations. The primary diagnosis is severe hypoxic brain damage. There is no alternative treatable diagnosis. There is no secondary subsequently developing complication that obscures the nature and extent of the brain damage.
"His current medical and nursing management is clearly first class in that he has been kept alive, he is no longer suffering chest infections, he has not had any skin breakdown or other complications, he is not experiencing worsening contractures, and his weight has been kept steady and he looks not unwell."
"My view on the removal of my father's feeding and hydration tube has not changed since it was first raised in August 2018. I did not agree then and will not agree now to such a decision. There is nothing that will change my mind on this…"
"To deprive my father from this right is unbearable to accept. I believe if the situation was turned around, and one of his children was in hospital in his condition, my father will fight this as well. He would still have faith and hope, and forbid this. I am holding onto to the fact that my father has the right, which is being fulfilled at the moment, and that should be accepted by all. Being in the state that he is in, being cared for in a hospital and by nurses, he is not being a burden on anyone. When my father's time is up, he will go, but on his own terms, not ours to decide."
"My dad was this really cool guy, a pilot who was very loyal to his company and to Jordan. He could have worked anywhere but he stayed with the company (Royal Jordanian) for 30 years. He was my best friend and my superhero. He gave us unconditional love with his family being his number one priority. We, his children always came first."
"Dad never discussed death with me, even when I was with him and he'd downed a bottle of whisky and was crying over his father's death. He didn't discuss the sort of state he's in now either. He always thought he'd die in a plane crash at 36,000 feet – go with a bang as you would say. I guess this sort of thing; you think it never happens to you but to someone else. The only time he said anything was when he was in a car crash in Thailand and his car rolled a few times, and he said to me, 'that he was ok. It could have been worse, but my time was not up."
"Maybe I'm being selfish and want to hang on to whatever is left of my dad. I don't know who would want to live like this? I'd love to pick up the phone and ask him, "I'm in this situation, what shall I do?', but I can't."
"When it came to not resuscitating him if his heart stops, that I had no issue with and I backed it 100%. If he was on a life support machine, I'd be the first to pull the plug. If my dad was on a machine keeping his heart and lungs going he would say 'pull the plug'. He is not on any machine or anything that is supporting him to stay alive. What he is being given, food and water, are the basics and right to have. I have been told there would be really good palliative care and that it can be peaceful and that I could talk to a palliative consultant, but it is not just that I worry that he would suffer. I've worked over in Africa, you can see a child there walking for miles to get a glass of water and here, in the UK, we'd deny water to my dad? People in the world are starving because they don't have enough money, and here, in the UK, you are going to starve my dad? Starving someone to death will take a long time, the body has to shut down. A vet would put a sick pet down quick and painless. Maybe he did say to some people 'If I'm ever like that shoot me' but ok shoot him, don't starve him."
"when my mother had Alzheimer's, towards the end, he expressed very strong views. He said things like: "for God's sake, if ever I get like this, take me out and shoot me"."
He then goes on to record that they visited their mother on another occasion where:
"he again talked to a lot of us saying he would not wish to live like that totally dependent on others. He would say it was no life I would never forgive anyone who let me be like mum is now. He was like our dad in that way who also had strong views. [GU] understood what our dad did. A few years earlier, when our dad had a terminal problem, he basically opened all the windows in the lounge closed the doors, it was snowing outside and lay down naked on the sofa to die. [GU] was called the next day by my mom to deal with my dad dead naked on the sofa."
Later in the same paragraph he records:
"[GU] said I hope I have the courage of dad to do as he did if ever I was like that, facing slow debilitating death or worse loss of independence."
"he was an out-and-about the sort of person. His life was getting in the car, going into town, being on a beach, seeing things, going places." She also states "when [GU] came over in 2013 to England because of my mum's dementia we were talking about things – he was very clear that he would not want to be around if he had dementia. He said things like "if I do not have my mental facilities there is no reason for me to be here".
She also stated:
"if he could have his say now, he would be arguing with anyone who said he had to be kept alive. He would be saying, "we need to talk about it. No, it cannot happen, it is not fair on me"."
"during that time, we had long, and deep conversations and I know that how he is now is not what he would want in any shape or form. He would want all life-sustaining treatment to stop."
"we often had conversations about death, and he would always say that his greatest fear would to be in a vegetative state. He would make me promise to "pull the switch" so as to end his life rather than be a vegetable. It was a fear of his."
"Dear [E] and [R]
I am very sad that we are having to think about helping [GU] this way but I want to tell you that for me as long as all the family agree I think it is what [GU] would want
us to do. You have my support and anything I can do to help make it easier for you please let me know.
I now realize after four years that [GU] will not be coming back and it's not good for him to stay like this for much more time. I want to come and see [GU] before anything happens and I hope we can arrange it so
that I can say goodbye to him.
Love to you both and the family
I miss you all very much
"my father who was a doctor and professor did not believe in life prolonging interventions just to appease families, and strangely the three of us had conversations about this when family members, friends and colleagues were diagnosed with terminal illness. I remember these conversations as ones in which [GU] took the same view as my father and I."
Later he said:
"we both agreed that prolonged suffering to the individual and their families was redundant and unnecessary…"
"…he would not want this for himself languishing through clinically assisted nutrition in my opinion."
"3. When Professor Wade assessed GU in April 2021, he concluded that GU was unlikely to be having any experiences, but that if he was, they would generally be unpleasant. At the hearing on 10-11 June 2021 the Court concluded that it was not in GU's best interests to continue to receive CANH.
4. The Official Solicitor submits that it is highly likely that this had been the case for some considerable time and that, had the question of GU's best interests been properly addressed in August 2018, when a dispute between family members was clearly apparent, the same decision would have been made then as now.
5. It is submitted that there was inordinate and inexcusable delay (my emphasis) on the part of RHND, in giving consideration to the issue of whether continued treatment was in GU's best interests, and in taking steps to enable the Court to determine that issue in the absence of family agreement. This was compounded by further delay on the part of the CCG."
"45. The Preamble to the 26 June 1945 Charter of the United Nations affirms the determination of the peoples of the United Nations "to reaffirm faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small".
i. the UN Declaration on the Elimination of All Forms of Racial Discrimination, 20th November 1963, which "solemnly affirms the necessity of speedily eliminating racial discrimination throughout the world, in all its forms and manifestations, and of securing understanding of and respect for the dignity of the human person". The International Convention on the Elimination of All Forms of Racial Discrimination, 21st December 1965, the Preamble to which refers to that Declaration;
ii. the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights, 16th December 1966, the Preamble to which states that the equal and inalienable rights of all members of the human family "derive from the inherent dignity of the human person". Furthermore, Article 10 of the former provides that "all persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person", and Article 13 of the latter states that the "States Parties ... recognize the right of everyone to education ... [and] agree that education shall be directed to the full development of the human personality and the sense of its dignity, and shall strengthen the respect for human rights and fundamental freedoms ...";
iii. the Convention on the Elimination of All Forms of Discrimination against Women, 18th December 1979, the Preamble to which emphasises in particular that discrimination against women "violates the principles of equality of rights and respect for human dignity";
iv. the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, 10th December 1984, the Preamble to which points out that the "equal and inalienable rights of all members of the human family ... derive from the inherent dignity of the human person";
v. the Convention on the Rights of the Child, 20th November 1989, the Preamble to which states that "the child should be fully prepared to live an individual life in society, and brought up in the spirit of the ideals proclaimed in the UN Charter, and in particular in the spirit of peace, dignity, tolerance, freedom, equality and solidarity" (see also Articles 23 § 1, 28 § 2, 37, 39 and 40 § 1);
vi. the International Convention for the Protection of All Persons from Enforced Disappearance (Articles 19 § 2 and 24 § 5 (c));
vii. the Convention on the Rights of Persons with Disabilities, the Preamble to which states that "discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person", and the aims of which include promoting respect for the "inherent dignity" of persons with disabilities (Article 1), this being also one of its general principles (Article 3 (a)) (see also Articles 8 (a), 16 § 4, 24 § 1 and 25);
viii. the Second Optional Protocol to the International Covenant on Civil and Political Rights on the abolition of the death penalty, 15th December 1989, the Preamble to which expresses the conviction that "abolition of the death penalty contributes to enhancement of human dignity and progressive development of human rights";
ix. the Optional Protocol to the Convention on the Rights of the Child on a communications procedure, 19th December 2011, the Preamble to which reaffirms "the status of the child as a subject of rights and as a human being with dignity and with evolving capacities";
x. the Optional Protocol to the International Covenant on Economic, Social and Cultural Rights, 10th December 2008 and the Optional Protocol to the Convention on the Elimination of All Forms of Discrimination against Women, 6th October 1999.
i. the American Convention on Human Rights, 22nd November 1969 (Articles 5 § 2, 6 § 2 and 11 § 1);
ii. the Final Act of the Helsinki Conference on Security and Cooperation in Europe, 1st August 1975, which stipulates that the States "will promote and encourage the effective exercise of civil, political, economic, social, cultural and other rights and freedoms all of which derive from the inherent dignity of the human person and are essential for his free and full development" (Principle VII);
iii. the African Charter on Human and Peoples' Rights of 27 June 1981, Article 5 ,which lays down that "[e]very individual shall have the right to the respect of the dignity inherent in a human being and to the recognition of his legal status";
iv. the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, 4th April 1997, the Preamble to which affirms, inter alia, "the need to respect the human being both as an individual and as a member of the human species and ... the importance of ensuring [his] dignity";
v. the Charter of Fundamental Rights of the European Union of 7 December 2000, the Preamble, which affirms that being "[c]onscious of its spiritual and moral heritage, the Union is founded on the indivisible, universal values of human dignity, freedom, equality and solidarity", and Article 1 of which states that "human dignity is inviolable [and] must be respected and protected" (see also Article 31 on "Fair and just working conditions");
vi. Protocol No. 13 to the European Convention on Human Rights concerning the abolition of the death penalty in all circumstances, 3rd May 2002, the Preamble to which points out that the abolition of the death penalty is essential for the protection of everyone's right to life and for the full recognition of the "inherent dignity of all human beings";
vii. the Council of Europe Convention on Action against Trafficking in Human Beings, 16th May 2005, the Preamble to which emphasises that "trafficking in human beings constitutes a violation of human rights and an offence to the dignity and the integrity of the human being" (see also Articles 6 and 16).
"Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine".
All this resonates clearly with the central philosophy of the framework of the Mental Capacity Act 2005.
"The vocation of the Council of Europe is to protect the dignity of all human beings and the rights which stem therefrom."
"The obligation to respect and to protect the dignity of a terminally ill or dying person derives from the inviolability of human dignity in all stages of life. This respect and protection find their expression in the provision of an appropriate environment, enabling a human being to die in dignity."
7. "Fundamental rights deriving from the dignity of the terminally ill or dying person are threatened today by a variety of factors:
7.1. insufficient access to palliative care and good pain management;
7.2. often lacking treatment of physical suffering and a failure to take into account psychological, social and spiritual needs;
7.3. artificial prolongation of the dying process by either using disproportionate medical measures or by continuing treatment without a patient's consent; (my emphasis)
7.4. the lack of continuing education and psychological support for health-care professionals working in palliative medicine; (my emphasis)
7.5. insufficient care and support for relatives and friends of terminally ill or dying patients, which otherwise could alleviate human suffering in its various dimensions;
7.6. patients' fear of losing their autonomy and becoming a burden to, and totally dependent upon, their relatives or institutions;
7.7. the lack or inadequacy of a social as well as institutional environment in which someone may take leave of his or her relatives and friends peacefully;
7.8. insufficient allocation of funds and resources for the care and support of the terminally ill or dying;
7.9. the social discrimination inherent in weakness, dying and death.
7.10. dying exposed to unbearable symptoms (for example, pain, suffocation, etc.);
7.11. prolongation of the dying process of a terminally ill or dying person against his or her will; (my emphasis)
7.12. dying alone and neglected;
7.13. dying under the fear of being a social burden;
7.14. limitation of life-sustaining treatment due to economic reasons;
7.15. insufficient provision of funds and resources for adequate supportive care of the terminally ill or dying."
"Right to personal dignity and integrity. This right implies that medical premises should be so arranged that examinations can be carried out and treatment given without a patient suffering any loss of dignity vis-à-vis other patients, physicians, hospital staff or the outside world. A patient may demand that no information be revealed regarding his presence at the hospital or his state of health"
"he may refuse visits from persons he does not wish to see. It should not be forgotten that a patient's human dignity generally implies a right to the truth, which is therefore closely linked to a patient's right to information. An individual is entitled to respect for the integrity of his being as a whole (body and mind). Naturally, physicians may not violate this integrity, even at the request of the person concerned, unless this is required by the latter's treatment. The law has in fact had to be adjusted to give doctors a say, as it is sometimes difficult to judge whether medical intervention is necessary. This too is a matter for a physician's own conscience."
(https://www.ohchr.org/en/hrbodies/crpd/pages/conventionrightspersonswithdisabilities.aspx). Here, in addition to the wording in the Preamble, dignity is also referred to under the "general principles" provision which includes "Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;" (Article 3(1)).
"33. Freedom from discrimination in the recognition of legal capacity restores autonomy and respects the human dignity of the person in accordance with the principles enshrined in article 3 (a) of the Convention. Freedom to make one's own choices most often requires legal capacity. Independence and autonomy include the power to have one's decisions legally respected. The need for support and reasonable accommodation in making decisions shall not be used to question a person's legal capacity. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity (art. 3 (d)) is incompatible with granting legal capacity on an assimilationist basis."
i. human dignity is predicated on a universal understanding that human beings possess a unique value which is intrinsic to the human condition;
ii. an individual has an inviolable right to be valued, respected and treated ethically, solely because he/she is a human being;
iii. human dignity should not be regarded merely as a facet of human rights but as the foundation for them. Logically, it both establishes and substantiates the construction of human rights;
iv. thus, the protection of human dignity and the rights that flow therefrom is to be regarded as an indispensable priority;
v. the inherent dignity of a human being imposes an obligation on the State actively to protect the dignity of all human beings. This involves guaranteeing respect for human integrity, fundamental rights and freedoms. Axiomatically, this prescribes the avoidance of discrimination;
vi. compliance with these principles may result in legitimately diverging opinions as to how best to preserve or promote human dignity, but it does not alter the nature of it nor will it ever obviate the need for rigorous enquiry.
ECHR case law
The concept of dignity engages both Article 8 and Article 3. In the Fourth Section judgment of Pretty v UK (app no. 2346/02), the court held that an undignified death may fall within the ambit of Article 8:
"65. The very essence of the Convention is respect for human dignity and human freedom. (my emphasis) Without in any way negating the principle of sanctity of life protected under the Convention, the Court considers that it is under Article 8 that notions of the quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity.
66. In Rodriguez v. the Attorney General of Canada ( 2 Law Reports of Canada 136), which concerned a not dissimilar situation to the present, the majority opinion of the Supreme Court considered that the prohibition on the appellant in that case receiving assistance in suicide contributed to her distress and prevented her from managing her death. This deprived her of autonomy and required justification under principles of fundamental justice. Although the Canadian court was considering a provision of the Canadian Charter framed in different terms from those of Article 8 of the Convention, comparable concerns arose regarding the principle of personal autonomy in the sense of the right to make choices about one's own body.
67. The applicant in this case is prevented by law from exercising her choice to avoid what she considers will be an undignified and distressing end to her life. The Court is not prepared to exclude that this constitutes an interference with her right to respect for private life as guaranteed under Article 8 § 1 of the Convention. It considers below whether this interference conforms with the requirements of the second paragraph of Article 8."
"81. Article 3 of the Convention enshrines one of the most fundamental values of democratic societies... Indeed, the prohibition of torture and inhuman or degrading treatment or punishment is a value of civilisation closely bound up with respect for human dignity.
87. Ill-treatment that attains such a minimum level of severity usually involves actual bodily injury or intense physical or mental suffering. However, even in the absence of these aspects, where treatment humiliates or debases an individual, showing a lack of respect for or diminishing his or her human dignity, or arouses feelings of fear, anguish or inferiority capable of breaking an individual's moral and physical resistance, it may be characterised as degrading and also fall within the prohibition set forth in Article 3 (see, among other authorities, Vasyukov v. Russia, no. 2974/05, § 59, 5 April 2011; Gäfgen, cited above, § 89; Svinarenko and Slyadnev, cited above, § 114; and Georgia v. Russia (I), cited above, § 192). It should also be pointed out that it may well suffice that the victim is humiliated in his own eyes, even if not in the eyes of others (see, among other authorities, Tyrer v. the United Kingdom, 25 April 1978,  ECHR 2, § 32, Series A no. 26, and M.S.S. v. Belgium and Greece [GC], no. 30696/09,  ECHR 108, § 220, ECHR 2011).
89. The word "dignity" appears in many international and regional texts and instruments (see paragraphs 45-47 above). Although the Convention does not mention that concept – which nevertheless appears in the Preamble to Protocol No. 13 to the Convention, concerning the abolition of the death penalty in all circumstances – the Court has emphasised that respect for human dignity forms part of the very essence of the Convention (see Svinarenko and Slyadnev, cited above, § 118), alongside human freedom (see C.R. v. the United Kingdom, 22 November 1995,  Fam Law 275, § 42, Series A no. 335-C, and S.W. v. the United Kingdom, 22 November 1995,  ECHR 51, § 44, Series A no. 335-B; see also, among other authorities, Pretty v. the United Kingdom, no. 2346/02,  ECHR 427, § 65, ECHR 2002-III).
90. Moreover, there is a particularly strong link between the concepts of "degrading" treatment or punishment within the meaning of Article 3 of the Convention and respect for "dignity". In 1973 the European Commission of Human Rights stressed that in the context of Article 3 of the Convention the expression "degrading treatment" showed that the general purpose of that provision was to prevent particularly serious interferences with human dignity (see East African Asians v. the United Kingdom, nos. 4403/70,  3 EHRR 76 and 30 others, Commission's report of 14 December 1973, Decisions and Reports 78-A, p. 56, § 192). The Court, for its part, made its first explicit reference to this concept in the judgment in Tyrer (cited above), concerning not "degrading treatment" but "degrading punishment". In finding that the punishment in question was degrading within the meaning of Article 3 of the Convention, the Court had regard to the fact that "although the applicant did not suffer any severe or long-lasting physical effects, his punishment – whereby he was treated as an object in the power of the authorities – constituted an assault on precisely that which it is one of the main purposes of Article 3 to protect, namely a person's dignity and physical integrity" (ibid., § 33). Many subsequent judgments have highlighted the close link between the concepts of "degrading treatment" and respect for "dignity" (see, for example, Kudła v. Poland [GC], no. 30210/96, ECLI:CE:ECHR:2000, § 94, ECHR 2000-XI; Valašinas v. Lithuania, no. 44558/98,  ECHR 483, § 102, ECHR 2001-VIII; Yankov v. Bulgaria, no. 39084/97,  ECHR 685, § 114, ECHR 2003-XII; and Svinarenko and Slyadnev, cited above, § 138)."
"138. Regardless of the concrete circumstances in the present case, the Court reiterates that the very essence of the Convention is respect for human dignity and that the object and purpose of the Convention as an instrument for the protection of individual human beings require that its provisions be interpreted and applied so as to make its safeguards practical and effective. It is therefore of the view that holding a person in a metal cage during a trial constitutes in itself – having regard to its objectively degrading nature which is incompatible with the standards of civilised behaviour that are the hallmark of a democratic society – an affront to human dignity in breach of Article 3."
"a threat directed to an exceptionally insensitive person may have no significant effect on him but nevertheless be incontrovertibly degrading; and conversely, an exceptionally sensitive person might be deeply affected by a threat that could be described as degrading only by a distortion of the ordinary and usual meaning of the word." [paragraph 30].
Domestic case law
"account may be taken of wider and less tangible considerations. An objective assessment of Mr. Bland's best interests, viewed through his eyes would in my opinion give weight to the constant invasions and humiliations to which his inert body is subject; to the desire he would naturally have to be remembered as a cheerful, carefree, gregarious teenager and not an object of pity; to the prolonged ordeal imposed on all members of his family, but particularly on his parents; even, perhaps, if altruism still lives, to a belief that finite resources are better devoted to enhancing life than simply averting death." (Page 813)
"But the sanctity of life is only one of a cluster of ethical principles which we apply to decisions about how we should live. Another is respect for the individual human being and in particular, for his right to choose how he should live his own life. We call this individual autonomy or the right of self-determination. And another principle, closely connected, is respect for the dignity of the individual human being: our belief that quite irrespective of what the person concerned may think about it, it is wrong for someone to be humiliated or treated without respect for his value as a person. The fact that the dignity of an individual is an intrinsic value is shown by the fact that we feel embarrassed and think it wrong when someone behaves in a way which we think demeaning to himself, which does not show sufficient respect for himself as a person." (page 826)
"Similarly, it is possible to qualify the meaning of the sanctity of life by including, as some cultures do, concepts of dignity and fulfilment as part of the essence of life. In this way one could argue that, properly understood, Anthony Bland's death would not offend against the sanctity of life." (page 827).
"I think that the fallacy in this argument is that it assumes that we have no interests except in those things of which we have conscious experience. But this does not accord with most people's intuitive feelings about their lives and deaths. At least a part of the reason why we honour the wishes of the dead about the distribution of their property is that we think it would wrong them not to do so, despite the fact that we believe that they will never know that their will has been ignored. Most people would like an honourable and dignified death and we think it wrong to dishonour their deaths, even when they are unconscious that this is happening. We pay respect to their dead bodies and to their memory because we think it an offence against the dead themselves if we do not. Once again, I am not concerned to analyse the rationality of these feelings. It is enough that they are deeply rooted in our ways of thinking and that the law cannot possibly ignore them. Thus, I think that counsel for the Official Solicitor offers a seriously incomplete picture of Anthony Bland's interests when he confines them to animal feelings of pain or pleasure. It is demeaning to the human spirit to say that, being unconscious, he can have no interest in his personal privacy and dignity, in how he lives or dies." (Page 829)
"The position therefore, in my view, is that if the judges seek to develop new law to regulate the new circumstances, the law so laid down will of necessity reflect judges' views on the underlying ethical questions, questions on which there is a legitimate division of opinion. By way of example, although the Court of Appeal in this case, in reaching the conclusion that the withdrawal of food and Anthony Bland's subsequent death would be for his benefit, attach importance to impalpable factors such as personal dignity and the way Anthony Bland would wish to be remembered but do not take into account spiritual values which, for example, a member of the Roman Catholic church would regard as relevant in assessing such benefit. Where a case raises wholly new moral and social issues, in my judgment it is not for the judges to seek to develop new, all embracing, principles of law in a way which reflects the individual judges' moral stance when society as a whole is substantially divided on the relevant moral issues. Moreover, it is not legitimate for a judge in reaching a view as to what is for the benefit of the one individual whose life is in issue to take into account the wider practical issues as to allocation of limited financial resources or the impact on third parties of altering the time at which death occurs." (pages 879 – 880).
"...it seems to me to be stretching the concept of personal rights beyond breaking point to say that Anthony Bland has an interest in ending these sources of others' distress. Unlike the conscious patient he does not know what is happening to his body, and cannot be affronted by it; he does not know of his family's continuing sorrow. By ending his life the doctors will not relieve him of a burden become intolerable, for others carry the burden and he has none." (page 897)
"86. The first is human dignity. True it is that the phrase is not used in the Convention but it is surely immanent in article 8, indeed in almost every one of the Convention's provisions. The recognition and protection of human dignity is one of the core values -in truth the core value - of our society and, indeed, of all the societies which are part of the European family of nations and which have embraced the principles of the Convention. It is a core value of the common law, long pre-dating the Convention and the Charter. (my emphasis) The invocation of the dignity of the patient in the form of declaration habitually used when the court is exercising its inherent declaratory jurisdiction in relation to the gravely ill or dying is not some meaningless incantation designed to comfort the living or to assuage the consciences of those involved in making life and death decisions: it is a solemn affirmation of the law's and of society's recognition of our humanity and of human dignity as something fundamental. Not surprisingly, human dignity is extolled in article 1 of the Charter, just as it is in article 1 of the Universal Declaration. And the latter's call to us to "act towards one another in a spirit of brotherhood" is nothing new. It reflects the fourth Earl of Chesterfield's injunction, "Do as you would be done by" and, for the Christian, the biblical call (Matthew ch 7, v 12): "all things whatsoever ye would that men should do to you, do ye even so to them: for this is the law and the prophets".
Further, the court highlighted at  -  that "the demands of human dignity fall to be evaluated in the particular context – not merely of place but also of time … As Lord Hoffmann said, "The content may change but the concept remains the same", reflecting Professor Ronald Dworkin's distinction between the "concept" which does not change and changing "conceptions of the concept": see R (ota Smeaton on behalf of the Society for the protection of unborn children) v Secretary of State for Health  EWHC 610 (Admin),  2 FLR 146 at 226 (paras -)."
"But, and this is the first point, insistence on the use of dignified means cannot be allowed to obstruct more important ends. On occasions our very humanity and dignity may itself demand that we be subjected to a certain amount - sometimes a very great deal - of indignity. Dignified ends may sometimes demand the use of undignified means … But this does not mean that means must be allowed to triumph over ends. There is a balance to be held—and it is often a very difficult balance to strike. It is difficult enough to balance the utility or possible futility of means against the utility or possible futility of ends: it is all the more difficult when one has to assess in addition the dignity or possible indignity of the means against the end in view. Modern medical law and ethics illustrate the excruciating difficulty we often have in achieving the right balance between using undignified means in striving to achieve dignified ends."
"53. If ever a court heard a holistic account of a man's character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation. I have given this judgment at this stage so that I can record my findings in relation to TH's views. Mr Spencer on behalf of the Trust does not argue against this analysis, he agrees that nobody having listened to the evidence in this case could be in any real doubt what TH would want."
" As I have already set out and at some length, I am entirely satisfied that Mrs. N's views find real and authoritative expression through her family in this courtroom. I start with the assumption that an instinct for life beats strongly in all human beings. However, I am entirely satisfied that Mrs. N would have found her circumstances to be profoundly humiliating and that she would have been acutely alert to the distress caused to her family, which she would very much have wanted to avoid. LR told me that Mrs. N would not have wanted to have been a burden; that I also believe to be entirely reliable.
 There is an innate dignity in the life of a human being who is being cared for well, and who is free from pain. There will undoubtedly be people who for religious or cultural reasons or merely because it accords with the behavioural code by which they have lived their life prefer to, or think it morally right to, hold fast to life no matter how poor its quality or vestigial its nature. Their choice must be respected. But choice where rational, informed and un-coerced is the essence of autonomy. It follows that those who would not wish to live in this way must have their views respected too."
"66 … If we are serious about protecting autonomy we have to accept that autonomous individuals have different views about what makes their lives worth living. There are many, many people who can live with terminal illness; there are many, many people who can live with a permanent disability at least as grave as that which afflicted Daniel James; but those same people might find it impossible to live with the loss of a much-loved partner or child, or with permanent disgrace, or even with financial ruin."
"The concept of "dignity" to which MacDonald J referred in Raqeeb at  to  (above) and which has influenced the view of Dr B, is, I believe, problematic and does not assist me in identifying what is in Pippa's best interests. In an adult or older child the concept of dignity might be linked to their exercise of autonomy and be a crucial factor in determining what is in their best interests, but that factor does not apply in the case of a young child like Pippa, whose values, beliefs, and wishes cannot reliably be ascertained or inferred. Perhaps we all think we can recognise human dignity when we see it, but there is obviously a high degree of subjectivity involved in describing someone's life or death as having dignity The protection of an individual's dignity has been deployed in support of decisions to continue life sustaining treatment – Raqeeb – and to withhold it - Alder Hey Children's Foundation Trust v Evans  EWHC 308 (Fam) at . For some, there is dignity in enduring suffering; for others, prolonged suffering constitutes a loss of dignity. There is a wide range of opinion as to what constitutes a dignified death. In the present case the Trust contends that the withdrawal of ventilation in a planned manner within the hospital and with appropriate palliative care, would allow Pippa to die peacefully with her family around her. Witnesses for the Trust told me of "chaotic" deaths they had witnessed, and which might occur if Pippa were at home, where a complication such as an uncontrollable desaturation could lead to her sudden death, perhaps without family members present. It might be said that Pippa's dignity would be protected in the former case and lost in the latter. Her mother would strongly disagree. She says, "I could not think of anything more undignified than Pippa's death being planned and for it to be carried out in the corner of the PICU when there is a procedure that can be done to potentially get her out of the ward and home." I take into account the views of Pippa's mother and of others about her best interests, but 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."
" … I commend him for the thought and care with which [the counsel for the Guardian] 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 [about the concept of dignity]. The judge [of the High Court] declined to attach any weight to the concept of dignity in reaching a decision about Pippa's best interests…Neither the appellant nor the Trust has sought to argue that he was wrong in adopting that course.
 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."
" Within this context, the judgment of this court in Raqeeb sought to recognise that some of the wide range of considerations relevant to the evaluation of best interests, such as the role of religious belief, futility (in its non-technical sense), dignity, the meaning of life and the principle of the sanctity of life, will be ones that admit, as the best interests principle itself can admit, of more than one "right" answer capable of driving the best interests decision of the court, particularly in the absence of factors which tend to attract societal consensus, such as the undesirability of pain and suffering. However, and consistent with the long-established process of evaluation conducted by the court with respect to best interests, whether, in a given case, those more subjective or value laden factors will drive the best interests decision will depend on the totality of the welfare factors that fall to be considered in that case."
EWHC 308 (Fam) I made the following observations which I do not consider
"54. In her evidence the Guardian expressed her clear support for the Trust's application. Her view had been foreshadowed in her report. The evidence, she told me, had served ultimately to confirm her recommendation. She stated that in her view Alfie's life now lacks dignity and his best interests can only be met by withdrawing ventilation. This evidence from an experienced children's guardian requires to be considered very carefully. I have done so. With great respect to her I disagree with her view on Alfie's dignity. As I had promised the family I attended the PICU at Alder Hey to meet Alfie. I was greeted not merely with courtesy by the parents and a number of aunts and uncles but with a sincere and genuine warmth. I was and remain grateful to them. Alfie's pod in the unit is large, comfortable and he is surrounded by some of the world's most up-to-date technology. F was, in my presence, assiduous to Alfie's care. He is entirely besotted with his son. M, both parents agree, is far less involved in Alfie's practical care and less confident. Her contribution, in my assessment, is of an entirely different complexion. She has, if I may say so, a zany and delightful sense of humour entirely free from self-regard or pomposity. Her love for her partner and her son was obvious. The atmosphere around Alfie was peaceful, dignified and though some might find it surprising for me to say so, very happy. The primary engine for all this is Alfie's mum.
55. Alfie's bed is festooned with toys. His walls are plastered with photographs and his many supporters have delivered a variety of football shirts to him. One, in particular, was signed by the entire Everton squad specifically for him.
56. Supporting all this is the diligent professionalism of some truly remarkable doctors and the warm and compassionate energy of the nurses whose concern and compassion is almost tangible. All this creates an environment which inherently conveys dignity to Alfie himself. In my judgment his life has true dignity. The far more challenging question is whether and if so how that can be maintained."
Lessons to be learned
"RHND considers it important to emphasise at the outset of this part of the submissions that it is a charity, it is not a Trust, this has clear resourcing implications which are addressed further below. The charity was set up with the aim of giving "permanent relief to such persons as are hopelessly disqualified for the duties of life by disease, accident or deformity," (originally called the Hospital for Incurables). RHND has always taken seriously its approach to ensuring a strong ethical position on the end of life care, and as explained at F1, this has involved the appointment until April 2018 as chair of the Ethics Committee of Laurence Oates CB (former Official Solicitor to the Supreme Court). Without diverging too far from the specifics of GU's case, RHND does consider it important to emphasise that its ethos is to provide rehabilitation and long-term care for its patients and that this coupled with the more limited experience of staff in withdrawing life sustaining treatment had an impact on its approach to CANH withdrawal cases."
"The Official Solicitor has been critical of RHND's reliance on its ethos in its representations. RHND understands why this criticism is being made, but is simply and honestly reflecting the cultural factors within RHND which meant that its policy in 2017 and 2018 did contain gaps which could lead to the sorts of delays experienced in GU's case. The policy produced by RHND in 2017 referred to the guidance produced by the Royal College of Physicians in 2013. However, RHND's policy then (and to the same extent as produced in October 2018) was a reactive one in the sense that it indicated that when it was appropriate to do so there would be discussions with the family about what options are open to them but the policy was not specific as to the processes that needed to be followed if it were not possible to obtain agreement. It is important to acknowledge this past practice and to acknowledge that RHND has been and will continue to take steps to ensure that there are no obstructions to RHND taking action. It should also be noted that a detailed Guidance and governance process (based on the prevailing National Guidance) was developed under the Policy, adopted by the RHN in October 2018 and revised in the light of experience in March 2019. This shows a firm commitment by the RHN to properly considering and progressing cases where this was appropriate."
"125. If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient's welfare, a court application can and should be made (my emphaisis). As the decisions of the ECtHR underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of the protection of human rights. The assessments, evaluations and opinions assembled as part of the medical process will then form the core of the material available to the judge, together with such further expert and other evidence as may need to be placed before the court at that stage."
"Annual review should include a consideration and discussion of best interests. Appropriate ceiling of treatment arrangements should be discussed and agreed at each annual review. Treating teams and commissioners should not simply continue treatment because it is the easiest option. Family members must be given ongoing opportunities to discuss withdrawal of life-sustaining treatment, including the practical, legal and emotional aspects"
It is submitted, on behalf of the Official Solicitor, that:
"as soon as there is any doubt over whether it is in the patient's best interests to continue to receive CANH, appropriate steps must be taken in every case to ensure that a timely decision is made on that issue, one way or the other. If it is not possible to achieve unanimity amongst the treating team and all those with an interest in the patient's welfare, or if it is considered that the decision is finely balanced, then steps must be taken to bring the matter before the Court, in a timely way, for a determination."