B e f o r e :
MR JUSTICE MOSTYN ____________________
____________________
Nageena Khalique QC (instructed by Mills & Reeve LLP) for the Applicant Sophia Roper (instructed by The Official Solicitor) for the 1st Respondent Peter Mant (instructed by MJC Law) for the 2nd Respondent John McKendrick QC (instructed by DAC Beachcroft) for the 3rd Respondent Edward Lamb (instructed by Local Authority Legal Services) for the 4th Respondent Hearing dates: 17-20 March 2020 ____________________
HTML VERSION OF JUDGMENT ____________________
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Mr Justice Mostyn:
The first question I have to decide is whether AF has the capacity to decide whether to continue to receive CANH [1] via a PEG tube [2] inserted into his stomach. All are agreed that he does not, and I also agree. He suffers from a grossly incapacitated mind resulting from a stroke on 5 May 2016.
The next question is whether it is in his best interests to continue to receive CANH. His daughter, SJ, argues that it is not. With the exception of the CCG and the local authority, the other parties, namely AF's GP and AF himself acting by his litigation friend the Official Solicitor, say that it is. The CCG remained neutral, but highlighted aspects of the evidence in closing submissions whilst local authority adopts a strictly neutral position.
I am strongly satisfied on the evidence, although it is not all one way, that were CANH to be withdrawn AF would not take sufficient food and drink orally to sustain life and would, sooner or later (probably sooner) expire. Let there be no doubt: that is the devout wish of SJ. In her moving evidence she told me "I am fighting for the right of my father to die". SJ's evidence was clear that she did not want her father to die and she was "fighting for his right to die" because she believes that is what he wanted. There is no question that she wishes her father to die for her sake or out of her own interests.
There is no room for any beating about the bush. If I were to agree with SJ, then I would be deciding that it was in AF's best interests that he be set on a path which will have the overwhelmingly likely consequence of his early death. Therefore, I have to answer on AF's behalf Prince Hamlet's question.
In making the best interests evaluation mandated by section 4 of the Mental Capacity Act 2005 I have clearly decided on the evidence it would not be in AF's best interests to discontinue CANH. Had I reached the opposite conclusion this would have given rise to distinctly complex legal and ethical questions. I would have had to have considered in depth the impact of article 2.1 of the European Convention on Human Rights (incorporated by the Human Rights Act 1998). As is well-known, this provides: "Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally …" This is subject to four exceptions, none of which is relevant to this case. Further, I would have had to have grappled with the somewhat impenetrable meaning of section 4(5) of the Mental Capacity Act 2005 which provides that "where the determination relates to life-sustaining treatment [the decision-maker] must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death."
These provisions, therefore, are not directly relevant to the decision I have reached. However, they do fortify the very strong presumption in favour of the preservation of life which is mentioned in numerous authorities. I have received, at my request, further written submissions about article 2 and section 4(5). I have reached the conclusion that I do not need to address these points in the light of the very clear decision about best interests which I have reached. I apologise for the extra work to which I have put counsel. However, I am not sure that an expression of sceptical obiter dicta by me as a first instance judge is going to be particularly helpful to anyone.
Before I explain my reasons for my decision there are two matters I should mention at the outset. This case was listed to be heard before me in court in Nottingham. But with the onset of the national COVID-19 medical emergency it became clear to me that a traditional physical courtroom trial was likely to be extremely risky to the participants and therefore was unacceptable. Therefore, I decided with the agreement of all participants, at a telephone case management conference on the day before the start of the trial, that the hearing would be by Skype. The organiser and manager of the virtual hearing was Mr Matt Nichols of DAC Beachcroft in Bristol, the solicitors for the GP. I am very grateful for his extremely assiduous work in ensuring that the hearing proceeded almost without a hitch. I am also grateful to all the lawyers and other participants who cooperated so fully so as to enable the hearing to function. There were 17 continuously active participants at the hearing and in addition 11 witnesses were heard. Further, two journalists observed the proceedings. The participants and witnesses were scattered all over the country from Northumberland to Cornwall, Sussex to Lancashire. The only slight problem was that a few of the recording files became corrupted by virtue of their size. The lesson is that a sequence of recordings should be made, none exceeding about 30 minutes. In the current national crisis, it must be expected that hearings will be conducted remotely in this way as a matter of routine practice.
The second preliminary matter is to record that SJ's counsel, Mr Peter Mant, and his instructing solicitor, Ms Kate Jackson, appeared pro bono. That was a major philanthropic act by them. The issues were complex and challenging and the case they formulated and presented was done with eloquence skill and erudition. I am very grateful to them.
For the purposes of the hearing I was provided with an ebundle made available via ShareFile containing 929 pages of evidence. Each party furnished comprehensive position statements. I heard 11 witnesses as follows:
The case was heard over three days.
In addition to the statutory provisions mentioned above the following parts of section 4 of the 2005 Act are centrally relevant when assessing AF's best interests:
I was also referred to numerous authorities including decisions of the House of Lords, the Supreme Court, and the European Court of Human Rights in Strasbourg.
These provisions and authorities clearly establish a number of simple propositions which guide the evaluative judgment which I must make as to AF's best interests. This exercise is quintessentially an evaluation rather than an exercise of discretion.
The propositions are:
Mr Mant places great weight on what he would describe as the golden seam running through the legislation namely the right of AF to self-determination and to have his autonomy respected. As he put it, it is the right of the past capacitous AF to determine the fate of the present incapacitous AF. His submissions came close to saying that this was in effect the determining factor. The other counsel do not dispute the relevance of this principle but do not agree that decisive weight is to be attributed to it. It is one of a number of factors to be put into the mix when making the holistic best interests evaluation. Of, at least, equal merit or importance is the principle of preservation of human life, as well as the fact that while AF's present life is markedly diminished compared to his life before his stroke, it is still a life which has intrinsic quality and from which he appears to derive appreciable pleasure.
A very important consideration when judging AF's present quality of life is to keep at the forefront of one's thinking that it would be fallacious to seek to judge the processes of his mind by the standards of a capacitous mind. All the expert witnesses agreed with me that the workings of a grossly incapacitated mind is a largely undiscovered country. It would be a grave mistake to assume that AF repines and that he makes relativistic judgments about the plight in which he finds himself. As Dr G rightly stated: "it is very difficult to know his subjective views since the stroke". What is known is that he derives simple physical and emotional pleasures from his quotidian existence.
AF was born in Ireland and is now in his seventies. He came to this country in the 1960s and obtained employment in the NHS, where he worked until his retirement. He was married; his wife died from cancer after a short illness. They had two daughters, SJ and K, who was disabled. By dint of loving care from her parents, K survived longer than expected and died in her teens.
AF is described by his family as a strong and fiercely independent man. His experiences in the NHS meant that he was familiar with disease and death. He stated on many occasions to those close to him that he would not want to be kept alive as a "body in a bed". This language is reminiscent of the description of Tony Bland by Lord Goff as a "living corpse". In her first statement SJ said this:
In her second statement she said this:
As SJ recognises it would have been open to AF to have written down an advance decision under sections 24 and 25 of the Act of 2005. But he did not. The evidence was that following the death of his wife he consulted the solicitor in Ireland who was dealing with the probate of her will about the possibility of making a living will, but that he never followed it up. However, given his expressed wishes I doubt very much, had he written such an advance decision, it would have covered anything other than a descent into a vegetative or minimally conscious state. As I will explain, AF is sentient, cognitively active, emotionally aware and possessed of motor functions, albeit grossly impaired physically and mentally. I find it impossible to conceive that he would ever have written an advance decision mandating being starved to death were he to find himself in his present position.
Similarly, I find it impossible to construe the statements that he made, which have been so clearly recorded by SJ and other family members, as being applicable to his current condition.
I record that in none of the cases that were cited to me was the protected party enjoying anything like the degree of functionality as that presently enjoyed by AF. They were all either vegetative, minimally conscious or in an equivalently parlous position.
I now record the expressions of his wishes and feelings in the immediate aftermath of the stroke on 5 May 2016.
On 3 August 2016 AF was discharged from hospital to the care home where he has remained ever since. Although there are records that for a while he resisted PEG feeding it is apparent that his resistance has reduced over time and he now cooperates by lifting his top for the PEG to be connected. The PEG feed is pump driven and operates overnight for 12 hours.
What was AF's capacity during this period? Dr H told me, and I accept, that he would have lost capacity to make a decision about his treatment approximately halfway between 5 and 19 May 2016. That would have been the watershed. He had definitely lost capacity when the first attempt to insert the nasogastric tube was made on 19 May 2016, and he had lost yet further capacity on each subsequent date. His rate of decline thereafter to his present position would have been approximately linear.
Therefore, virtually all of the expressions of wishing to die were made by AF after he had lost capacity. Now, it is true that the court must take into account wishes expressed by an incapacitated person. This is not controversial. However, what weight the court gives to such wishes must equally take into account that they are expressed by somebody who has lost capacity and, as I have stated above, the workings of an incapacitated mind are a largely undiscovered country. Undoubtedly, at this time AF was most upset at the cruel hand that fate had dealt him. However, I cannot accept that he then expressed a fully rational and considered view that he wished to take the ultimate fatal step.
AF's present existence is obviously limited but it is clear that he derives pleasure in a number of respects from physical and emotional stimuli. I summarise the evidence which I have heard:
AF's GP who knows him well was clear that the proposal would inevitably lead to AF's death. He was very strongly opposed to it. He was of the view that not only would it be unethical but also arguably unlawful.
Professor W was of the opinion that were AF to be set on the proposed path there would be a "large probability" that it would lead to his death. Nonetheless, he was of the opinion that it was in his best interests that he should be so directed. His evidence was that only one possible conclusion can be drawn from the totality of the evidence available concerning his past wishes and other personal factors, and that is that AF did not wish CANH to be initiated or continued, and that he would still not wish CANH to continue. In his opinion the totality of AF's behaviour is of a man who "does not want to be here" but who does not wish to expose himself to more pain or distress by active resistance and does not wish to distress those who care for him by being antisocial or uncooperative.
I do not agree with this view which is as much ethical as it is medical. In writing Dr H appeared to be of the same opinion as Professor W although when he was faced with the awful consequences of the proposal under cross-examination he appeared to shrink from that view, stating that in such circumstances he would not agree with Professor W's view and that it was in any event not a medical question. Dr G gave compelling evidence about the possible psychiatric disorders from which AF may be suffering. She was of the opinion were he to be set on the path proposed death would be "overwhelmingly likely". She was clear that the proposal would be directly contrary to his best interests. The dietician, BR, was less sure that the proposed path would inevitably lead to death. This was a "very difficult question" the answer to which was "we just do not know". This led me to observe, as I had earlier, that if this were the case then what is being proposed is a macabre experiment. The palliative care consultant, Dr P stated that in the present national medical emergency it would be impossible to provide palliative support for AF either in his current home or in a hospice. That is an additional reason for refusing the proposal.
I revert to the specific matters in section 4(6) and (7):
I have reached the very clear conclusion that it would be categorically contrary to AF's interests for him to be set on the path that will lead to his inevitable death from starvation. This may be a diminished life, but it is a life nonetheless which has, as I have said, intrinsic quality and from which AF derives pleasure and satisfaction.
For these reasons I conclude that it would be in AF's best interests for CANH to continue.
That concludes this judgment.
Note 1 Clinically Assisted Nutrition and Hydration [Back]
Note 2 Percutaneous Endoscopic Gastrostomy tube. [Back]