B e f o r e :
(by her litigation friend, Mrs B)
Bridget Dolan QC and Susanna Rickard provided written submissions on behalf of the Official Solicitor at the invitation of the Courts
Hearing date: 22 June 2017
Judgment date: 20 September 2017
Crown Copyright ©
Mr Justice Peter Jackson:
"M is rarely awake and all I can describe as is 'a body on a bed'. She is unconscious for the majority of the time. Even when she is awake, M makes no sign of recognition and does not look at me or engage with me. I find it really distressing because even when she goes to sleep, her eyes do not fully close and she looks so uncomfortable. You can see the whites of her eyes but her eyelids do not shut.
The nurses and carers at the hospital try their best to provide M with the routine of care. They put the TV on and radio on, and sometimes she is put in a wheelchair and sat out in her wheelchair in a communal area. However, she never exhibits any signs of awareness, and it is no longer apparent when she is content or enjoys doing something or not, or whether she has any sense of feeling, smell or hearing whatsoever.
When I visit M, I always enter the room cheerfully and say hello to her, I tend to her bedding, or change the TV channel, and I will often put on DVDs that I know she used to really enjoy, such as Dirty Dancing and Billy Elliott. I do this out of a sense of routine, and just in case she has any awareness left. However, for around 18 months now I have seen nothing which makes me think she has any awareness of what is going on whatsoever. She never makes a reaction to a change of TV programme, or when myself or her stepdad look directly at her or lean over her.
I continue to visit M at least 4 times a week. I insist that I should do her laundry. As her mother, I want to ensure that she is clean and comfortable and that her clothes smell clean and like home, rather than coming from the hospital launderette. Going to see M and caring for her is a huge part of my life. For years now, I find myself getting up, and instead of going to work like anybody else, I have gone to the hospital to see my daughter."
"M is showing no signs of being aware of her surroundings at all, she is currently not really 'living' any life at all, and to keep her alive by forced and artificial treatment at this stage seems cruel…
I am aware that M's treating clinicians have now come to the same conclusion that it would not be in M's best interests for treatment to continue, and that they agree I am acting in M's best interests by bringing this application. I am extremely grateful to the clinical and care team for all that they have done to support M over the years.
It is incredibly difficult, as M's mother, for me to reach the conclusion that it is in her best interests for treatment to stop and palliative care instead to be provided. However, I do not feel that M would decide now, if she was able to, that the current treatment is benefiting her in any way, and her life is being prolonged for no purpose, where she has no quality of life. I have always been incredibly close to M, and in fact many people used to comment how we were so similar in mind-set and temperament. I am of the view that if M was able to make a decision right now, she would not want treatment to continue.
This application is hugely distressing and emotional for me. I love M with all my heart and have spent almost my entire life caring for. I have been so close to M and feel that I know her inside and out. She would have hated to be in the position she is in now.… This is not the life she would have wanted to continue living."
"M does not recognise me or the children and her quality of life is virtually non-existent. I feel that the PEG feed is keeping her alive, with no possibility of change or cure – it is simply causing M to suffer. When she was diagnosed, we were told she would live for 18 – 19 years, yet 25 years on she is still living with this terrible condition.
When M was diagnosed, I recall her telling me that she would not want to live with Huntington's for years and years, and although we did not talk about her end-of-life care, I also believe that she would not have wanted to live in this way, considering the type of person she was. She was vivacious and full of life before the onset of her illness, and in my view, she would not have wanted to be kept alive with no hope of recovery or improvement."
"Currently, my mother can't do anything for herself and I don't think she even knows we are there when we visit her any more. I continue to visit her weekly but she can't make any eye contact with me anymore and doesn't seem to recognise me at all. My mum used to always enjoy seeing her family, but that enjoyment has now been taken away from her and she doesn't seem to have any quality of life at all.
My mother never mentioned her views or wishes as to her end of life to me. I was very young at the initial stage of the disease and I don't think she wanted to upset me. We always stay positive around her, even when she became more unwell.
However, I believe that my mother would not have wanted to suffer in this way and that it is not in her best interests to be kept alive when she's just suffering and no longer seems to have any awareness. She isn't able to enjoy activities, or even recognise people in the room. I feel that it would have really distressed her if she knew that she would be left living in this way."
"It is impossible to be certain whether and how much M is currently suffering on a day-to-day basis because we cannot assess her awareness of her situation. However, she is not comatose, and it is likely that she does retain some general awareness of the situation as well as an ability to experience discomfort. The situation may be very distressing to her, given her previous views on quality of life and enjoyment. This existential suffering may have been going on for several years and may continue for several more."
Having discussed all the relevant features, he concluded:
"Taking all this into account, it is my assessment that M's best interests favour withdrawing artificial nutrition and hydration… I recommend this be done gradually as Dr S has proposed. I recommend nutrition and hydration be withdrawn together, as sustaining hydration without nutrition may prolong M's general suffering and any additional suffering from hunger, without any particular benefit."
21.7.16 Best interests meeting concludes that CANH no longer in M's best interests
29.7.16 Dr S provides witness statement to this effect
9.16 Dr Wild's report
Then A number of significant professionals had periods of leave
12.16 Hospital instructs Capsticks
Then Capsticks seek to discuss issues with the Official Solicitor
2.17 Mrs B consults Irwin Mitchell solicitors
1.3.17 Emergency legal aid granted to M for a s.21A DOLS application
24.4.17 Proceedings issued by Mrs B
17.5.17 Directions made on paper by Pauffley J
25.5.17 Directions hearing Peter Jackson J
22.6.17 Final hearing
(1) Where a person is unable to make a decision for herself, there is an obligation to act in her best interests: s. 1(5).
(2) Where a decision relates to life-sustaining treatment, the person making the decision must not be motivated by a desire to bring about death: s.4(5).
(3) When determining what is in a person's best interests, consideration must be given to all relevant circumstances, to the person's past and present wishes and feelings, to the beliefs and values that would be likely to influence her decision if she had capacity, and to the other factors that she would be likely to consider if she were able to do so: s.4(6).
(4) Account must be taken of the views of anyone engaged in caring for the person or interested in her welfare: s.4(7).
"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 what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be."
The need for proceedings
(i) By the ad hoc Court of Protection Rules Committee, chaired by Charles J as the Vice-President of the court. The Committee, having received a range of views, has published notes in May and July 2017, with a view to changes being introduced at the end of the year. It recommends the removal of the practice direction and the establishment of a multi-disciplinary working group to discuss the underlying issues and to give guidance about the circumstances in which cases should and should not be taken to court.
(ii) By the Court of Appeal in Briggs, where at , Eleanor King LJ stated two propositions, amongst others:
a. If the medical treatment proposed is not in dispute, then, regardless of whether it involves the withdrawal of treatment from a person who is minimally conscious or in a persistent vegetative state, it is a decision as to what treatment is in P's best interests and can be taken by the treating doctors who then have immunity pursuant to section 5 MCA.
b. If there is a dispute in relation to medical treatment of an incapacitated person, and, specifically, where there is a doubt as to whether CANH should be withdrawn, then the matter should be referred to the court for a personal welfare determination under sections 15-17 MCA.
These propositions are built upon detailed analysis of the Mental Capacity Act in regard to serious medical treatment cases, along with its accompanying regulations and practice directions: [14-15], [19-22] and [26-27]. However, the question of whether the proceedings had been necessary was not decisive in that case, nor was it the subject of full argument, in particular from the Official Solicitor, acting as litigation friend to Mr Briggs.
(i) At and after the hearing, Ms Butler-Cole filed written submissions on behalf of M.
(ii) For the hospital, Mr Patel provided brief, largely concurring, written submissions.
(iii) Given the Official Solicitor's general interest in the issue and his passing involvement in the pre-proceedings stages, I invited observations from him. I am grateful to him for a substantial skeleton argument prepared by Bridget Dolan QC and Susanna Rickard, which (among other things) trenchantly asserts that an application to court should be made in every case of proposed withdrawal of CANH, unless there is a valid advance directive.
(iv) This has led to an equally robust response from Ms Butler-Cole.
(v) I have also seen the Official Solicitor's public response to the notes published by the ad hoc Committee.
(1) There was no statutory obligation to bring the case to court, and although the cases and materials mentioned in this judgment are of considerable authority, they do not all point in one direction and they are not formally binding upon me. None of them sustains the proposition that a court decision is necessary as a matter of law, as opposed to as a matter of practice. What is however clear is that the court is not the source of lawfulness: it identifies whether treatment is or is not lawful, but it cannot make unlawful treatment lawful, or vice versa.
(2) The essential question is whether the state's Art. 2 duty mandates court oversight as a matter of law. I do not consider that it does, for these reasons:
(i) The present practice is anomalous. The right to life belongs to everyone, enabled and disabled. Individuals who are in PVS or MCS are at the extremes of vulnerability, but many among us will at some time in our lives come to be in a precarious state. Overwhelmingly, treatment decisions up to and including the withholding and withdrawal of life-support are taken by clinicians and families working together in accordance with recognised good practice. No one suggests that these decisions should all be the subject of external supervision.
(ii) The question that therefore needs to be answered is whether it is necessary and proportionate for legal proceedings to be required only in a limited subset of cases. Are these cases so different in kind to other serious medical treatment decisions as to justify a completely different approach? In my view, they are not. The reasons given for requiring all PVS/MCS cases to come before the court could equally apply to a very much larger patient population.
(iii) Consideration must also be given to the deterrent effect of costly and time-consuming proceedings, both on the individual case and on the patient population in general. The equality rights of disabled persons require clinicians and carers to take reasonable steps to assure themselves that the treatment and care they are providing is and continues to be beneficial, and that the person's unique point of view is not forgotten because they are unable to express it for themselves. A mandatory litigation requirement may deflect clinicians and families from making true best interests decisions and in some cases lead to inappropriate treatment continuing by default. Indeed, the present case stands as an example, in that M received continued CANH that neither her doctors nor her family thought was in her best interests for almost a year until a court decision was eventually sought.
(iv) It is not suggested that the court should be involved in PVS/MCS cases where there is a valid and applicable advance decision, yet the grave consequences of the decision and the risk of error are no different in such cases.
(3) In my judgment, therefore, a decision to withdraw CANH, taken in accordance with the prevailing professional guidance – currently the GMC's Good Medical Practice guidance, the BMA guidance 'Withholding and Withdrawing Life-prolonging Medical Treatment' and 'End of Life Care' and the Royal College of Physicians' Guidance on Prolonged Disorders of Consciousness – will be lawful and the clinicians will benefit from the protection of s.5. The court is always available where there is disagreement, or where it is felt for some other reason that an application should be made, but this will only arise in rare cases, such as Aintree.
(4) This conclusion does not in any way detract from the crucial importance of structured medical assessment in PVS/MCS cases: see Baker J in W v M at [258-9] and Newton J in St George's Healthcare NHS Trust v P & Q  EWCOP 42 at [46-49]. Nor does it detract from the obvious need for expert second opinions in these cases.
The form of the application
The litigation friend
 So the issue whether a family member or friend should be appointed as a litigation friend is fact and case sensitive and will turn on whether in all the circumstances the family member satisfies the relevant Rules and more generally whether he or she can properly perform the functions of a litigation friend and so in a balanced way consider and properly promote P's best interests.
 To my mind, this will often be the case because a devoted and responsible family member or friend will be able to perform the tasks to achieve the aims set out in para  above.
 However, I acknowledge that there will be other cases when the history shows that a family member or friend is not an appropriate litigation friend because, for example, (a) he or she has not been taking or is not likely to take that approach or is in dispute with other family members, or (b) the way in which the issue has arisen will mean that the pressures on, or interests of, family members of friends make this inappropriate.