Openshaw Place, Ringway Preston, PR1 2LL |
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B e f o r e :
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A Clinical Commissioning Group |
Applicant |
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P (By Her Litigation Friend the Official Solicitor) - and – TD |
First Respondent Second Respondent |
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Mr Michael Horne QC (instructed by the Official Solicitor) for First Respondent
The Second Respondent appeared in Person
Hearing dates: 13 May 2019
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Crown Copyright ©
This judgment was delivered in private. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of P, members of P's family and those caring for P must be strictly preserved. All persons, including representatives of the media, must ensure that this condition is strictly complied with. Failure to do so will be a contempt of court.
Mr Justice MacDonald:
INTRODUCTION
BACKGROUND AND EVIDENCE
"…of her late partner who was on a life-support machine and P and his mother had to make the decision to turn off the life-support machine. P had said to her family that she would not want to be left in such condition if anything happened to her".
At that meeting, both HS and TD confirmed that that was the only conversation that they could recall having with P about this type of situation. However, as will be seen, each referenced P's statement in this regard on a number of occasions thereafter.
"Nursing staff report significant improvement in P's awareness and ability to communicate nonverbally and make choices such as which clothes she wants to buy and which activities she wants to participate in. However she remains severely disabled …"
Dr H considered at this time that P might at some point be able to make her own choices about her care and that work needed to be done to improve her condition and to see whether she had capacity to make decisions.
"… reviewed P … And spoke to her daughter. Over the past 18 months or so, P has not been observed to make any meaningful responses to stimuli suggesting that she is now functioning at the vegetative rather than the minimally conscious level."...
Again in August 2017, following this reported period of no meaningful responses, Dr H further noted that:
"Her family are very clear that she would not want to live like this and are supportive of setting very clear ceiling to escalation of treatment and a palliative approach. … They would also wish to explore the process of applying to the Court for withdrawal of feeding. …"
"I reviewed P and took part in the multidisciplinary best interest meeting. From descriptions of staff working closely with her, it is clear that P shows some responses which are incompatible with the diagnosis of vegetative state, giving her a diagnosis of minimally conscious state. …"
Within this context, Dr H felt however that it was difficult to judge whether the responses could be reflex actions and stated that her condition was not going to improve and she was vulnerable to fitting, chest infections and future health complications. Cognitively, Dr H considered that P would not get any better. At the best interests meeting on 11 October 2017 TD again explained that P had told her, by reference to her former partner, that "… nobody should be left to live like that."
"P does not give any eye contact and all communication has to be based on facial expression. Ever seems to smile if she is enjoying something such as gentle tactile approach during personal care or pampering, or when the sensory lights are on. She does move her feet when given foot spa. On one occasion she appeared to smirk in response to a joke. There does not appear to be any consistent differences in behaviour when treated by different members of staff. … She goes out of the nursing home to the shops or to [the] beach. On trips out she does seem to be more awake or alert but they are unable to tell whether there is any indication that she is any more aware of her surroundings."
"Whilst the Christmas party at the Unit … P had some funny Xmas bands on her face & head, I was stating how funny we both looked and as a response P gave myself lots of smiles and laughs…"
Staff further recalled that on 29 January 2019:
"… I said to her I will get you to smile at me one day P, I was watching the TV straight after having the conversation, then I turned around fast and said Boo, P then gave me a big smile"
There is however a concession that these signs are not consistent, and that there are long periods when P shows no signs of alertness and appears to be sleeping even when her environment is noisy. When interviewed by Mr Beck on 12 April 2019, TD did not dismiss the reports that P was said to smile, but explained that her mother mostly appeared to be asleep when she visited and considered that other behaviours were just reflexes.
i) During assessment on 12 October 2018 there was no response from P that could be interpreted consistently as being above the level of reflex. P has shown some behaviours that appear, at face value, to be inconsistent with being reflex behaviours. The frequency with which these behaviours occur varies widely and according to the behavioural charts can be very infrequent at times.ii) Whilst it has previously been reported that P displayed some response to command by blinking, apparently moving her tongue and squeezing fingers, this again has not been consistent. A proportion of P's blinking will have represented an active response to command rather than reflex. The frequency of this behaviour was recorded to be at its peak in the middle of 2016, but even then only once every four to seven days. This behaviour does not constitute a reliable method of communication and it has not been possible to develop a consistent system of communication with P utilising these apparent responses.
iii) P's awareness of the world around her will be very limited and there are long periods where she has no awareness at all. P will have "islands of time" where her level of awareness is better, but this will vary from being alert but unaware, to being able to make very basic binary choices for short periods of time, such as which of two items she would like to be placed where.
iv) P's cognition will be slightly better when she is not fatigued, not otherwise unwell, not overstimulated, not influenced by medication and not low in mood. When all of those factors are optimal P will show some slightly higher levels of awareness and responsiveness to the extent that she may be able to interpret tone of voice or perhaps one or two words said to her.
v) It is not possible to determine from the behaviour charts and notes the frequency and duration of the periods of increased awareness, but these periods seem to have become much less frequent after the middle of 2016. Even when maximally aware, P will have very little insight into her condition and, to the extent she is aware, is likely to be significantly depressed in the context of her situation.
vi) All of P's sensory input will be disordered. She can see, but it is impossible to determine the degree to which she is able to understand what she is seeing and her understanding of visual input is likely to be limited. She can hear, but it is impossible to know what she is able to understand. P is said to perceive touch but any response was not sufficient for Dr Pinder to record. She will not experience smells because of her tracheostomy, and she will not experience taste, because she is tube-fed.
vii) P has no significant functional movement, other than, possibly, an unreliable control of her eyelids.
viii) It is not possible to determine whether P is experiencing pleasure or enjoyment. The only behaviours documented that may indicate this is her smiling or appearing relaxed. It is however, very difficult to determine whether this is a reflex behaviour, or whether it is an active movement to indicate happiness. Within this context, Dr Pinder has carefully analysed a short video clip sent to the Official Solicitor by staff the Unit, which is said to show the episode of P laughing at the Easter party this year as described above. Dr Pinder agrees that the response P shows in the video can be interpreted as her 'laughing'. However, having considered each step in the video, Dr Pinder is also clear that this is a reflexive response to being kissed rather than a display of awareness of humour.
ix) It is not possible to determine, from P's records, how frequently she appears to be experiencing pain or discomfort. She often appears unsettled when she has an increase in the amount of secretions from her chest, which settles when she has been given paracetamol. At other times she is given pain relief, but this seems to be prior to activities, such as changing the dressing on her PEG, which were expected by staff to be painful.
x) P does not seem to behave differently with any particular members of staff or her family and she does not appear to differentiate between people she knows and people she does not know. There was no consistent evidence that P gained more or less pleasure being in the presence of her family than in the presence of others. She is unable to form any positive or negative meaningful relationships with others.
xi) A further structured assessment will not give further useful information as to P's level of awareness, enjoyment of life or whether she experiences pain or discomfort.
xii) The responses in the behaviour charts from the Unit are not inconsistent with a diagnosis of MCS. On the basis of the assessment and the observations of the community neurological rehabilitation team P is in a minimally conscious state;
xiii) P's life expectancy is limited to four to six years from 2018.
i) Obtained disclosure of, and reviewed the relevant clinical records pertaining to P;ii) Raised two sets of further written questions of the expert in this matter, Dr Pinder, to which Dr Pinder has responded in full;
iii) James Beck, of the Official Solicitors Office, visited the unit caring for P on 1 April 2019 and twice on 8 April 2019 to interview members of staff, both in person and over the telephone;
iv) James Beck has spoken to the family of P and David Edwards of the Official Solicitors Office has followed-up those conversations in light of Dr Pinder's responses to the Official Solicitor's further questions.
v) David Edwards has spoken to Dr H and again to family members in light of Dr Pinder's responses to those questions.
"… there was a choice between letting R die or letting him live a life where he could couldn't do anything, where he could not walk and couldn't talk. P told TD that she wouldn't leave someone like that and she wouldn't do that to a dog"
This recollection was consistent with that of LD, who remembered that P had said she would not:
"let a dog live like that … they both had agreed that they wouldn't want to be left living like R would have been had treatment not been withdrawn. Both of them had said that they would not leave the other living like that. They also shared these views with their other cousins and they all agreed that it wouldn't be fair to leave someone living like that."
"HS seemed glad treatment had not in fact been withdrawn. She made comments about this on several occasions. [Staff] had many in-depth conversations with HS during the last 18 months of life and she appeared to remain of the view that P's care and treatment should continue".
However, whilst agreeing that HS became more accepting of treatment, other staff were not sure that she had actually changed her mind about its withdrawal. Both TD and LD consider that HS did not change her mind. TD stated that during the last year of her life HS would say things like "I saw your mum it is awful to see [her] like that". LD goes further, telling Mr Beck that it is her belief that if HS had known that she was going to die so soon, she would have taken P with her in a mercy killing. This information is also verified by TD in her statement. Both suggest that the Unit were aware of this and implemented a safety plan that ensured that HS was alone with P for the last year of her life. There is no independent corroboration of this assertion before the court.
"… if her mum knew what was going on she would be mortified and would consider it undignified because P was someone who cared about her appearance and would not want others to see her the way she is now."
Within this context, it was clear from the brief submission that she made to the court that TD now sees an unbridgeable gulf lying between the mother she knew prior to April 2014 and the situation she now sees when she visits P. TD told me that her mother is "not a person anymore" and that "I know she would not have wanted this".
"… as things are she doesn't feel that S is able to properly enjoy life. S seems to feel she's betraying P by showing affection and love to others. She refers to LD's husband has her "dad" and will refer to LD as her "mum" but at times she appears to feel guilty about calling LD her mum and will say that P is her mother. LD feels that the current situation is stopping S from moving on with her life. She described it as not a normal situation. S is going to high school in September and LD feel she needs a fresh start".
LD considers that P would not have wanted S to experience these emotions. Given her age, S has not been asked her views. It is apparent from the evidence before me that that she keeps saying that she wants her mum back to cuddle, to take her to the park, to tell her things; she wants her old mum back.
RELEVANT LAW
Capacity
1 The principles
(1) The following principles apply for the purposes of this Act.
(2) A person must be assumed to have capacity unless it is established that he lacks capacity.
(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
…/
2 People who lack capacity
(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.
(2) It does not matter whether the impairment or disturbance is permanent or temporary.
(3) A lack of capacity cannot be established merely by reference to—
(a) a person's age or appearance, or
(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.
(4) In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities.
…/
3 Inability to make decisions
(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable—
(a) to understand the information relevant to the decision,
(b) to retain that information,
(c) to use or weigh that information as part of the process of making the decision, or
(d) to communicate his decision (whether by talking, using sign language or any other means).
(2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).
(3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.
(4) The information relevant to a decision includes information about the reasonably foreseeable consequences of—
(a) deciding one way or another, or
(b) failing to make the decision.
i) A person must be assumed to have capacity unless it is established that they lack capacity (Mental Capacity Act 2005 s 1(2)). The burden of proof lies on the person asserting a lack of capacity and the standard of proof is the balance of probabilities (Mental Capacity Act 2005 s 2(4) and see KK v STC and Others [2012] EWHC 2136 (COP) at [18]);ii) Determination of capacity under Part I of the Mental Capacity Act 2005 is always 'decision specific' having regard to the clear structure provided by sections 1 to 3 of the Act (see PC v City of York Council [2014] 2 WLR 1 at [35]). Thus capacity is required to be assessed in relation to the specific decision at the time the decision needs to be made and not to a person's capacity to make decisions generally;
iii) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success (Mental Capacity Act 2005 s 1(3));
iv) A person is not to be treated as unable to make a decision merely because he or she makes a decision that is unwise (see Heart of England NHS Foundation Trust v JB [2014] EWHC 342 (COP) at [7]). The outcome of the decision made is not relevant to the question of whether the person taking the decision has capacity for the purposes of the Mental Capacity Act 2005 (see R v Cooper [2009] 1 WLR 1786 at [13] and York City Council v C [2014] 2 WLR 1 at [53] and [54]);
v) Pursuant to s 2(1) of the 2005 Act a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain (the so called 'diagnostic test'). It does not matter whether the impairment or disturbance in the functioning of the mind or brain is permanent or temporary (Mental Capacity Act 2005 s 2(2)). It is important to note that the question for the court is not whether the person's ability to take the decision is impaired by the impairment of, or disturbance in the functioning of, the mind or brain but rather whether the person is rendered unable to make the decision by reason thereof (see Re SB (A Patient: Capacity to Consent to Termination) [2013] EWHC 1417 (COP) at [38]);
vi) Pursuant to s 3(1) of the 2005 Act a person is "unable to make a decision for himself" if he is unable (a) to understand the information relevant to decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision whether by talking, using sign language or any other means (the so called 'functional test'). An inability to undertake any one of these four aspects of the decision making process set out in s 3(1) of the 2005 Act will be sufficient for a finding of incapacity provided the inability is because of an impairment of, or a disturbance in the functioning of, the mind or brain (see RT and LT v A Local Authority [2010] EWHC 1910 (Fam) at [40]). The information relevant to the decision includes information about the reasonably foreseeable consequences of deciding one way or another (Mental Capacity Act 2005 s 3(4)(a));
vii) For a person to be found to lack capacity there must be a causal connection between being unable to make a decision by reason of one or more of the functional elements set out in s 3(1) of the Act and the diagnostic element of 'impairment of, or a disturbance in the functioning of, the mind or brain' required by s 2(1) of the Act, i.e. for a person to lack capacity the former must result from the latter (York City Council v C [2014] 2 WLR 1 at [58] and [59]);
viii) The threshold for demonstrating capacity is not an unduly high one (see CC v KK & STCC [2012] EWHC 2136 (COP) at [69]).
Best Interests
4 Best interests
(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of—
(a) the person's age or appearance, or
(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.
(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3) He must consider—
(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and
(b) if it appears likely that he will, when that is likely to be.
(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
(5) Where the determination relates to life-sustaining treatment he 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.
(6) He must consider, so far as is reasonably ascertainable—
(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he
had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.
(7) He must take into account, if it is practicable and appropriate to consult them, the views of—
(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
(b) anyone engaged in caring for the person or interested in his welfare,
(c) any donee of a lasting power of attorney granted by the person, and
(d) any deputy appointed for the person by the court, as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).
(8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which—
(a) are exercisable under a lasting power of attorney, or
(b) are exercisable by a person under this Act where he reasonably believes that another person lacks capacity.
(9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.
(10) "Life-sustaining treatment" means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.
(11) "Relevant circumstances" are those—
(a) of which the person making the determination is aware, and
(b) which it would be reasonable to regard as relevant.
"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 to the treatment is or would likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be."
i) Whether it is likely that the person will at some time have capacity in relation to the matter in question and, if it appears likely that they will, when that is likely to be (Mental Capacity Act 2005 s. 4(3)). The MCA Code of Practice at para 3.14 provides that where a person's capacity is likely to improve in the foreseeable future then, if practical and appropriate, the person should be helped to make the relevant decision by waiting until their capacity improves. The Code of Practice at para 4.27 provides that an assessment must only examine a person's capacity to make a particular decision when it needs to be made and, accordingly, it may be possible to put off the decision until the person has capacity to make it. However, para 5.26 of the Code of Practice recognises that in emergency situations, such as when urgent medical treatment is needs, it may not be possible to see if the person may regain capacity so that they can decide for themselves whether or not to have the urgent treatment;ii) The person's past and present wishes and feelings (and, in particular, any relevant written statement made by them when they had capacity) (Mental Capacity Act 2005 s 4(6)(a)). The Court must inquire into and then consider all evidence of wishes and feelings before taking the decision (see paragraphs 5.18 to 5.20 of the MCA Code of Practice). Other evidence may include evidence from relatives and those who have cared for her about her wishes and feelings which may assist the Court to understand P as a person. It is important to be rigorous and scrupulous in seeking out what P's views would have been about the decisions in issue. Their clarity, cogency and force will have a direct impact on the weight they are to be given (see Sheffield Teaching Hospitals NHS Foundation Trust v TH [2014] EWCOP 4 at [56]). If her present wishes can be ascertained with reasonable confidence, they should not be undervalued (see Wye Valley NHS Trust v B [2015] EWCOP 60 at [10] to [18]).
iii) The beliefs and values that would be likely to influence their decision if they had capacity (Mental Capacity Act 2005 s 4(6)(b)). This includes not just religious beliefs but what was important to P, how that affected her view of the world and the factors which P thought were important in taking decisions for herself;
iv) The other factors that P would be likely to consider if she were able to do so (Mental Capacity Act 2005 s 4(6)(c));
v) If practicable and appropriate, the views of, inter alia, anyone named by the person as some to be consulted on the matter in question, anyone engaged in caring for the person or interested in her welfare as to what would be in the person's best interests and in particular as to the matters set out in s 4(6) of the 2005 Act (Mental Capacity Act 2005 s 4(7)).
"[62] … when the magnetic factors engage the fundamental and intensely personal competing principles of the sanctity of life and of self-determination which an individual with capacity can lawfully resolve and determine by giving or refusing consent to available treatment regimes: i) the decision maker and so a judge must be wary of giving weight to what he thinks is prudent or what he would want for himself or his family, or what he thinks most people would or should want, and ii) if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life."
And at [71]:
"[71] I acknowledge and urge that the evidence and reasoning relied on to reach a conclusion that P would not have given consent to the relevant life-sustaining treatment, and then to rely on it as a weighty or determinative factor to depart from the default position that P's best interests are promoted by preserving his or her life, requires close and detailed analysis which founds a compelling and cogent case that this is what the particular P would have wanted and decided and so considered to be in his or her best interests."
"...the 'sanctity of life' or the 'intrinsic value of life', can be rebutted (pursuant to statute) on the basis of a competent adult's cogently expressed wish. It follows, to my mind, by parity of analysis, that the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance that those of the capacitous".
"There is a very strong presumption in favour of taking all steps to prolong life and save in exceptional circumstances, or where the patient is dying, the best interests of the patient will normally require such steps to be taken. In case of doubt, that doubt falls to be resolved in favour of the preservation of life. But the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity…"
DISCUSSION
CONCLUSION