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A life that sparkles

 

This is a discussion about the decision in King’s College Hospital NHS Foundation Trust v C  2015

 

http://www.bailii.org/ew/cases/EWCOP/2015/80.html

 

It is a Court of Protection decision about whether a woman C, who medical professionals all agreed needed to undertake kidney dialysis treatment in order to survive, should be able to refuse such treatment or about whether the Court should make the decision on her behalf.  It is very sad, because what we are discussing here is (a) whether C will live or die and (b) why she might feel that life was no longer worth living for her.  She has a family who would greatly miss her if she were to die, and it is a case that has a lot of human tragedy. It also though, stirred up a lot of other feelings for me when I read it – there’s sadness absolutely, but it also has some more uplifting things to say about human spirit and how people can choose to live their lives outside of the norm.

 

The Judge was MacDonald J.  The case was obviously decided under the Mental Capacity Act 2005 principles – the key ones being that

 

(a) A person who has capacity is allowed to make decisions that would be bad for them and that someone else would not make if they were in their shoes

(b) The law’s starting point is that everyone is assumed to have capacity unless there is evidence to the contrary to prove that they do not

(c) There are specified factors to consider in assessing capacity – a person’s ability to understand the issue, to weigh up the various factors, to retain that information and to reach a decision. And a person can and should be helped with all of those issues

(d) If a person lacks capacity, the Court would then make a decision as to what they considered was in C’s best interests

(e) A Court cannot compel doctors to deliver treatment, but simply authorise them to deliver the treatment in the absence of consent if it is in C’s best interests.

 

Background then

 

 

  • C is a person to whom the epithet ‘conventional’ will never be applied. By her own account, the account of her eldest daughters and the account of her father, C has led a life characterised by impulsive and self-centred decision making without guilt or regret. C has had four marriages and a number of affairs and has, it is said, spent the money of her husbands and lovers recklessly before moving on when things got difficult or the money ran out. She has, by their account, been an entirely reluctant and at times completely indifferent mother to her three caring daughters. Her consumption of alcohol has been excessive and, at times, out of control. C is, as all who know her and C herself appears to agree, a person who seeks to live life entirely, and unapologetically on her own terms; that life revolving largely around her looks, men, material possessions and ‘living the high life’. In particular, it is clear that during her life C has placed a significant premium on youth and beauty and on living a life that, in C’s words, ‘sparkles’.
  • With respect to youth and beauty, her daughter V states that just as C has never seen herself as a mother, she has never seen herself getting old. Upon being diagnosed with breast cancer in December 2014 when aged forty-nine V relates that C expressed the view that she was “actually kind of glad because the timing was right”. It is recorded in C’s medical notes that she did not want to discuss the benefits and risks associated with chemotherapy but was “keen not to have any change in size or deficit that will affect her wearing a bikini”. She refused to take medication prescribed for the disease because “it made her fat”. There appear to have been no concerns expressed regarding C’s capacity in this context.
  • C’s preoccupation with not getting old also manifested itself in other ways. Upon learning that her daughter G was pregnant C’s reaction was, says G, one of anger in circumstances where this meant she would be a grandmother and made her feel “past her sell-by date”. Within the foregoing context, in her statement V relates that C has often said over the years that she wanted to “go out with a bang” and has been firm in her conviction that, with regard to growing old, she “just would not let it happen”.
  • C’s emphasis on money, material possessions and ‘living the high life’ is also well established by the evidence in this case. From the history of her four marriages provided by V it would appear that C has, over the course of those four marriages, considered a downturn in the financial fortunes of her husbands an entirely reasonable ground for moving on and has taken requests that her spending be curtailed or limited to be unreasonable. The value that C places on wealth and possessions is further demonstrated by her statement to V that, her fortunes having suffered a downturn in recent times, she does not want to “live in a council flat” or to “be poor”.
  • Despite her patent faults C is dear to her daughters. V relates that she and G have learnt to accept their mother for who she is: complexities, seeming contradictions, blind spots, self-centred and manipulative behaviour, excruciating honesty and all. V tells me that she has accepted that there is no point in trying to make C a ‘typical mother’ in the same way she could not have been a ‘traditional wife’ to her four husbands. She is who she is says V and summarises the position as follows:

 

“My mother’s values, and the choices that she made have always been based on looks (hers and other people’s), money, and living (at all costs) what she called her “sparkly” lifestyle…her life was, from her point of view, a life well lived. I have never known her express regret, or really to take responsibility for anything, including the choices she has made”.

Sadly, as C got older, she had health problems, and this substantially affected her emotional state and her outlook on life, leading her to take an overdose. The overdose did not kill her, but it caused substantial damage to her organs, which led to the need for dialysis treatment, which would be life-saving.

  • Over the past year the progress of C’s life has, sadly, followed a trajectory that has moved away from what she terms her “sparkly” lifestyle. As I have already noted, C was diagnosed with breast cancer in December 2014. She underwent a lumpectomy in January 2015 and radiotherapy in March 2015, with treatment concluding in May 2015. C has said that, understandably, this placed her under some stress. In August 2015 C experienced the acrimonious breakdown of a long term relationship. This also resulted in the loss of her business and the financial security attendant thereon, the loss of her home and the generation of significant debt. C was also the subject of arrest and criminal charges arising from an incident that occurred during the breakdown of her relationship. This situation is described in the report of Dr R as exposing C to ‘back to back psycho-social stressors’.
  • On 7 September 2015 C attended V’s house and asked where her Veuve Clicquot was. Later that day C attempted to commit suicide. The attempt was premeditated and planned. C went to a beach and took sixty paracetamol tablets with champagne. The attempt was not successful (C later told her daughters that she “royally cocked it up”). When C awoke she became worried about the pain that she might suffer and called her general practitioner who advised her to call an ambulance. She was admitted to a local hospital for urgent care and subsequently transferred to King’s College Hospital on 29 September 2015. Whilst at the local hospital V relates that C stated that she would try to kill herself again and that she was adamant that she wanted to die.
  • The consequences of C’s attempted suicide have been grave and are described in detail in C’s medical records and in the statements of Dr L, liver consultant and Dr S, consultant nephrologist. In summary, as a result of her paracetamol overdose C suffered an injury to her liver and an acute injury to her kidneys. Since admission to hospital C has, consequently, required renal replacement therapy. That therapy was provided initially by a ‘filtration’ machine and thereafter by intermittent haemodialysis for four hours three times per week.
  • Following a period of intensive treatment after the overdose, C made slow but progressive improvement in her liver function. However, an improvement in her kidney function has yet to occur with her kidneys showing no signs of significant recovery. Dr L is clear that the ongoing care of C is now predominantly supportive in nature save for the essential requirement of kidney dialysis. The anticipated duration of that treatment is from a minimum of six weeks up to a maximum of several months. As at 6 November Dr L was of the view that the outlook for C’s kidney function was unclear but that, generally, her doctors anticipated a recovery in due course. Dr L described the view regarding C’s kidney function on that date as ‘cautiously optimistic’.
  • In a statement dated 9 November 2015 Dr S observes that the ‘overwhelming majority’ of people who suffer an acute kidney injury as a result of a paracetamol overdose recover independent kidney function, usually within four to six weeks. However, he further notes that in circumstances where C is now nearly nine weeks from her overdose, arriving at a confident prognosis is made more difficult. In C’s medical records Dr S is recorded as informing C on 5 November 2015 that her prognosis remained unpredictable and that, even were the damage to her kidneys to be potentially reversible, the prognosis would remain uncertain.
  • In his statement Dr S explains that the most likely explanation for the current state of C’s kidney function is a combination of paracetamol related kidney injury, severe liver injury and several episodes of infection requiring antibiotic treatment, and that the most likely outcome remains that C will recover independent kidney function over the course of several months. Dr S however makes clear that it is possible that C has sustained irreversible damage to her kidneys in the form of cortical necrosis. The way to establish definitively whether this is the case for C would be to perform a kidney biopsy. At present however this is a high risk procedure due to C having abnormal blood clotting levels as a result of her liver injury. A kidney biopsy will become less risky as C’s liver recovers.
  • Dr S states that C may well be left with an element of chronic kidney damage. Within this context, if C recovers kidney function to the point where she does not need renal replacement therapy then Dr S would expect C’s kidney function to have minimal effect on C’s ability to continue as she had prior to the overdose. However, if C does not recover kidney function Dr S is clear that she would require regular renal replacement therapy in order to stay alive. The options for such replacement therapy would be a continuation of the haemodialysis that C currently has, peritoneal dialysis or a kidney transplant.
  • In an updating statement dated 11 November 2015 Dr L opines that C’s prognosis “remains excellent with survival fully anticipated”. Dr L records that restoration of C’s liver function to normal is anticipated within a four to six week period. Dr L further records that C’s kidney function has still yet to recover but anticipates an 85 to 95% chance of this occurring having regard to the progression seen in a large majority of similar cases. However, like Dr S, Dr L acknowledges that, with the passage of time, the likelihood of full recovery diminishes. Dr L estimates that if C is not fully recovered within a period of three months, later recovery is unlikely, with the chances of delayed restoration after three months estimated at less than 20%. In such circumstances C would require long term renal replacement therapy.
  • Dr S makes clear that if C does not have further dialysis and continues to have minimal kidney function, she will become progressively unwell as levels of potassium and acid in her blood increase to dangerous levels. These levels will typically become life threatening between three and seven days following the last haemodialysis session. If C drinks during this period then she will also endure fluid build up on her lungs and insufficient oxygen in her bloodstream as a result. The risks of a sudden cardiac event or deterioration will increase after more than three days without dialysis. If C’s kidney function remains poor and she passes very little urine, it is likely that C will die within five to ten days of having no dialysis. C would become progressively drowsy and possibly confused after several days although a sudden cardiac arrest and death is possible at any point.
  • Were doctors to have to force C to receive dialysis against her consent Dr S makes clear that this would be a significant undertaking. He states that were doctors to attempt to administer dialysis to C in circumstances where C took measures to try and stop such treatment the treatment would immediately become unsafe for C (and potentially for medical staff). In such circumstances, Dr S makes plain that in order to dialyse C against her will she would need to be sedated with that sedation being heavy enough to render her, essentially, unconscious for the duration of the dialysis. In order to achieve this safely the procedure would need to be undertaken in a high dependency setting. There are, of course, risks associated with heavy sedation, including respiratory depression and low blood pressure which may in turn necessitate further intervention including intubation and ventilation. Finally, Dr S states that a person seeking to avoid dialysis may remove the dialysis tubes when able to do so, resulting in the need to insert a dialysis tube into a large vein each time and under sedation. There is a risk of bleeding and infection each time this is done, which risk is significantly increased in C given her abnormal clotting. There is also a risk of damage to veins, thereby increasingly restricting venous access. Dr S opines that the minimum frequency of dialysis in this context would be once every five days, although the risks of a sudden cardiac event or deterioration increase over time after more than three days without dialysis.
  • It is within the context of this background C now refuses to undertake further haemodialysis. The parties are agreed that I should deal with the issue of capacity only at this stage. Accordingly, as set out above, the issue for the court is whether, at this time, C has the mental capacity to decide whether or not to consent to the life saving treatment that her doctors wish to continue to give her.

 

For most people, if doctors told them that they needed to have treatment which would work and would largely return them to health within about 6 weeks but that they would die if they didn’t have it, they would have the treatment. But C is not most people. And the tests are not whether ‘most people’ would do something, but whether C lacked capacity to make such a decision.

 

There were three capacity assessments. The first two concluded that C lacked capacity to make the decision and that her decision not to undertake the treatment because she did not want to live a life that she would consider ‘intolerable’ was an irrational one, possibly as a result of a Personality Disorder.  The third concluded that she did have capacity to make the decision, which was one that others might not have made but that she had weighed up as being the right one for HER.  The complication with the third was that shortly before it, C had been given some strong medication

 

 

  • Although at a point where she had been administered a synthetic opiate pain killer some two hours previously, C told Dr Stevens on 10 November 2015 that “I know that I could get better; I know that I could live without a health problem, but I don’t want it; I’ve lost my home; I’ve lost everything I’d worked for; I’ve had a good innings; it’s what I have achieved.” Further, Dr Stevens records in his report (although it is not reflected in his contemporaneous notes) that C:

 

“made very clear to me that she understands and has retained the information that her liver is making a good recovery and that her kidneys are recovering, albeit more slowly, such that her doctors wish her to undergo thrice weekly haemodialysis for some months to come. C also understands and has retained the information that her doctors expect her kidney function to recover such that haemodialysis can be discontinued at some point in 2016 and that her medical quality of life can be expected to improve thereafter. In response to my further exploration, C told me that she had thought a great deal about her medical condition and that, despite appreciating that she has been given a good prognosis, she remains steadfastly determined to die as soon as possible.”

 

 

I had better make it plain that looking at it objectively, the life that C could live after treatment would not be considered by 99.9% of the population to be ‘intolerable’  – this was not a case where the person’s freedom of movement would be restricted or that her mental faculties were ebbing or flowing away, or that she would be in physical pain or distress.  This was a very person specific view.

C’s daughter puts it very very well

 

“As I have said above, my mother would never have wanted to live at all costs. Her reasons for trying to kill herself in September and for refusing dialysis now are strongly in keeping with both her personality and her long held values. Although they are not reasons that are easy to understand, I believe that they are not only fully thought through, but also entirely in keeping with both her (unusual) value system and her (unusual) personality. Her unwillingness to consider ‘a life she would find tolerable’ is not a sign that she lacks capacity; it is a sign that what she would consider tolerable is different from what others might. She does not want any life that is on offer to her at this stage. Put bluntly, her life has always revolved around her looks, men, and material possessions: she understands that (as put to her by Professor [P]) other people have failed relationships, feel sad and continue living, but for her, as she has said, she doesn’t want to ‘live in a council flat’, ‘be poor’ or ‘be ugly’ (which she equates with being old). As is set out in the notes, she truly means it when she says ‘I have lost everything this year’, and that being the case, she doesn’t want to accept any of the options on offer to her as – as she sees it – an ‘old grandma’, even were her kidneys to fully recover. ‘Recovery’ to her does not just relate to her kidney function, but to regaining her ‘sparkle’ (her expensive, material and looks-orientated social life) which she believes she is too old to regain. Again, the references in the notes to her talking about being ‘sociable, hosting parties and going out with the girls’ are fitting: to those who know her well, her entire identity has been built around being a self-described ‘vivacious and sociable person who lives life to the full and enjoys having fun'”.

 

With that in mind, was her decision a result of the Personality Disorder that all three experts agreed that she had (or had traits of), or was it a logical extension (for her) of her actual Personality – the choice entirely in keeping with the choices that she had made about the way she wanted to live her life?

 

It was very finely balanced – how can you really unpick how much this decision is part of a Personality Disorder and how much it is C being unusual but consistent in that unusualness ?

 

SUBMISSIONS

 

  • On behalf of the Trust Mr Horne concedes, very properly, that this is a finely balanced case that sits close to the border that runs between an individual with capacity making an unwise decision and an individual lacking capacity to make the decision in question.
  • On balance the Trust submits C lacks the capacity to decide whether or not to receive dialysis on the basis that she is unable to use and weigh information relevant to the decision as part of the process of making that decision. Specifically, the Trust submits that the examples given by Dr R show that (a) C lacks belief in, and is unable to use and weigh her positive prognosis and (b) that C is unable to contemplate a future that includes her recovery, having closed her mind to this. The Trust submits that this constitutes an inability to use and weigh information for the purposes of s 3(1)(c) and that this inability is because of the impairment of, or a disturbance in the functioning of, the mind or brain for the purposes of s 2(1) comprised of the personality disorder diagnosed by Professor P and Dr Stevens. In the words of Dr R, the Trust submits that C’s decision to refuse treatment is not reached with significant using and weighing of information demonstratively ending with a balanced, nuanced, used and weighed position constituting a capacitous but objectively assessed unwise decision. Again, the Trust submits that this situation is arrived at because of the personality disorder under which C labours.
  • By contrast, having heard the oral evidence received by the court at this hearing the Official Solicitor submits that C does have capacity to decide whether or not to refuse treatment.
  • The Official Solicitor submits that the evidence in this case points not to C being unable to use and weigh information concerning her prognosis and future but, rather, to C taking into account that information and choosing to give it no weight as against other relevant information more important to her in the context of her outlook and values when coming to her decision. Within this context, citing Re SB (A Patient: Capacity to Consent to Termination) [2013] EWHC 1417 (COP) the Official Solicitor submits that, even were the court to consider C’s approach to her prognosis as overly rigid or ‘black and white’ C has given many other valid reasons for refusing treatment more important to her than her prognosis, which reasons evidence capacitous decision making within the context of her particular outlook and belief system. In any event, the Official Solicitor cautions the court against characterising C’s attitude towards her prognosis as rigid, or ‘black and white’ or irrational in circumstances where that prognosis remains uncertain and is worsening the longer C goes without her kidneys showing any sign of recovery. Were the court to conclude that C is unable to ‘use or weigh’ information relevant to the decision, the Official Solicitor further submits that the Trust cannot establish a causal link between this inability and C’s personality disorder in circumstances where the inability in question could equally be attributed to C’s belief system or stubborn character.
  • The submissions made on behalf of V are akin to those made on behalf of C by the Official Solicitor. V contends that her mother has the capacity to decide whether to accept treatment.
  • V submits that the Trust places the test for capacity too high by demanding from C a closely reasoned “balanced, nuanced, used and weighed position” in respect of her medical prognosis. V submits that on a proper application of the criteria set out in the 2005 Act the evidence before the court shows C has made a clear and capacitous decision, which decision she has maintained, after using and weighing the information relevant to that decision in accordance with her particular outlook and values. Thus, V submits, C has reached a clear and reasoned decision by giving weight to the factors that are important to her (a risk of a life lived on dialysis that is unacceptable to her, a risk of long term disability that is unacceptable to her, exhaustion with treatment and her wish not to endure further weeks or months of the same, her wish not to continue to endure the symptoms and pain associated with treatment, the risk she will not be able to attain her former “sparkly” lifestyle, her desire not to get old and lose her appearance and her wish to attain her original goal of ending her life) and no weight to the factors that are not (namely, the possibility that she might recover to a point where she can live without dialysis, the possibility of a future life that is ‘tolerable’ and the impact of her death on those who care for her) within the context of her (very unusual) set of values and outlook. V submits that this is the very essence of a capacitous decision. Again, were the court to conclude that C is unable to use and weigh information relevant to her decision, V submits that the Trust cannot establish a causal link between this inability and C’s personality disorder in circumstances where the inability in question could equally be attributed to C’s belief system and stubborn character.

 

 

 

At this point when I was reading the case, I didn’t know how it would be decided, but on a personal level I was hoping that C would succeed.  Not that I think it is objectively right for her not to have the treatment, but that this is a decision that everything I had read of her life told me that she would have made for herself, and personal freedom and autonomy is such a vital thing.  You may think otherwise – I think it is potentially quite a divisive issue.

 

DISCUSSION

 

  • In this difficult case I have come to the conclusion that, on balance, C does have capacity to decide whether or not to receive dialysis. My reasons for so deciding are as follows.
  • The first question for the court is whether the Trust has established on the balance of probabilities C is unable to make a decision about the matter in hand having regard to the matters set out in s 3(1) (the so called ‘functional test’). The Trust accepts that C is able to understand the information relevant to the decision, to retain that information and to communicate her decision. In relation to the remaining element of the functional test I am not satisfied that the Trust has proved to the requisite standard that C is unable to use and weigh the information relevant to the decision in question.
  • Notwithstanding the submission of the Trust, I am not satisfied that C lacks belief in her prognosis or a future that includes her recovery to the extent she cannot use that information to make a decision, or that C is unable to weigh her positive prognosis and the possibility of a future recovery in the decision making process. In my judgment, the evidence in this case, when viewed as a whole, is indicative of C acknowledging that her prognosis is positive, that there is a possible future in which she survives and of her weighing that information in her decision making process.
  • The entries in the medical records which I have referred to above show that C has, on a number of occasions over the span of her treatment, tacitly acknowledged that her prognosis is positive if she maintains treatment and has weighed that against other factors.
  • For example, on 29 September 2015 the rationale expressed by C for refusing treatment was that she believed she may need dialysis for the rest of her life, saw a bleak future if she could not have a life of socialising, drinking and partying with friends, that getting old scared her both in terms of illness and appearance. C was recorded by Dr O (Liver SHO) as being clear in her understanding that without dialysis, adequate nutrition and treatment of her liver she would die and, within that context, as being able to take in the medical advice and fully understood the risk of refusing treatment. Following interventions from her father and a friend on 29 September, C changed her mind and consented to treatment. It is clear from the medical records that C appears, with the assistance of her father and her friend, to have undertaken an exercise of using or weighing information as it is recorded that an hour was spent talking to C about her grave medical condition, her chances of recovery, and her prognosis for the future.
  • On 1 November 2015 C stated that she did understand that she would die if she stopped dialysis and this would not necessarily be pleasant. She is recorded as listening to the positive prognosis and quality of life on long term dialysis following which C said she understood it but that her ‘heart is not in it’.
  • On 2 November C stated that she felt fed up and exhausted, was hoping her kidney function would improve in 6 weeks but it hadn’t, could not imagine herself dependent on dialysis, felt it would be pointless to continue if she could not recover to a functional level where she could continue with her previous lifestyle, felt she did not have the mental health to continue with the treatment and therefore she was determined not to continue with the treatment. C is recorded as having understood that this would shorten her life expectancy.
  • On 5 November 2015 Dr R recorded C reasoning her position as follows, “C states she remains adamant that she does not wish to continue with dialysis treatment. The reasons, as she tells me, are that she has never wanted to have it (despite many weeks of engaging), she has acquiesced rather than engaged enthusiastically. Now she finds it painful, exhausting and she has had enough. She states she knows she will die as a result of not having it”.
  • On 9 November 2015 C told Dr R that she knew what the doctors were doing and were not angry with them, as they were just trying to save her life but she did not wish to be saved. When speaking to the representative of the Official Solicitor on 10 November 2015 C acknowledged the possibility that her kidneys will recover, saying “I am not prepared to wait for the possibility that my kidneys will get better”. On 9 November 2015 C told Dr R that she knew what the doctors were doing and were not angry with them, as they were just trying to save her life but she did not wish to be saved. When Dr R spoke to C about being able to envisage a future when she was back on her feet again with no line in her neck and no pain C is recorded as saying “they have told me before that I would do that and I am still here”… “I can’t go on like this for months and months or forever.”
  • There is also evidence before the court of C expressly acknowledging her positive prognosis and weighing the same. On 3 November 2015 V recalled that in deciding not to continue with treatment following the MDT meeting on that day C “had clearly used the time to consider the prospect of having what Professor P described as a ‘tolerable life’, and decided that, although with the more optimistic prognosis, it required some thought, she still did not want to live.” More generally V was clear in her evidence that C “repeatedly told us that she didn’t care whether her kidneys improved or not, and that she had thought about it, and that she wanted to die regardless. She – in the full knowledge that it was entirely possible that she might make a full recovery – said that if her kidney function improved, and she were discharged, that she would ‘throw [herself] under a train'”. No party sought to suggest that V was mistaken in her recollection of these conversations. On 10 November 2015 C told Dr Stevens that “I know that I could get better; I know that I could live without a health problem, but I don’t want it”. Dr Stevens states in his report that she “made very clear to me that she understands and has retained the information that her liver is making a good recovery and that her kidneys are recovering, albeit more slowly, such that her doctors wish her to undergo thrice weekly haemodialysis for some months to come. C also understands and has retained the information that her doctors expect her kidney function to recover such that haemodialysis can be discontinued at some point in 2016 and that her medical quality of life can be expected to improve thereafter.” Whilst there are difficulties with Dr Stevens’ report overall, I am prepared to accept that his recording of what C said to him is accurate, and indeed no party suggested otherwise.
  • I of course accept that there have been a number of occasions where C has appeared to reject out of hand her positive prognosis, in particular in conversations with Dr R on 29 September, 20 October, 3 November, 5 November, 9 November and 10 November 2015.
  • However, in my judgment it is important to place these statements by C in their proper context. In particular, they must be placed in the context of the other occasions, as summarised in the preceding paragraphs, when C has acknowledged her positive prognosis and weighed the same either tacitly or expressly. Thus, for example, whilst Dr R considered that on 29 September 2015 C was compromised by “very rigid thinking style and her distorted cognition such as black and white thinking and catastrophic thinking e.g. that she will forever require dialysis and will never recover to a stage where she can live an independent life again”, as I have noted, on the same day C was recorded by Dr O as being clear in her understanding that without dialysis, adequate nutrition and treatment of her liver she would die and, within that context, as being able to take in the medical advice and fully understood the risk of refusing treatment. Further, C was recorded as appearing to have capacity on that date. Likewise, whilst telling Dr R on 10 November that “there is no hope ‘a tiny sliver of hope’ as she put it today, that she will get better” she told Dr Stevens on the same day that “I know that I could get better; I know that I could live without a health problem.” In this regard I recall G’s evidence that her mother’s response to professionals will, in G’s experience, depend on whether she considers them to be ‘on her side’ (part of her ‘charm team’ as C styles that group) or not and that Dr R was not considered to be part of that ‘team’.
  • Further, in my judgment C’s more categorical statements regarding her prognosis, and the question of the extent to which they demonstrate an inability to use and weigh information regarding the same, must also be placed in the context of the information that she was receiving during this period with respect to that prognosis.
  • Central to both the opinion of Dr R and the opinion of Professor P that C lacks the ability to use and weigh information relevant to her decision is C’s alleged rigid and insistent rejection of her prognosis within the context of consistent optimism in this regard expressed by her treating doctors, characterised by Dr L’s statement on 9 November 2015 that C’s prognosis “remains excellent with survival fully anticipated”. However, I am not satisfied that the medical records bear out the assertion that C was, in fact, receiving uniformly positive and reassuring information concerning her prognosis (most especially in relation to the likelihood of her being able to live a life without dialysis).
  • At the time C was said to have “an overvalued idea that her quality of life will not improve” on 25 September 2015 and at the time she refused dialysis on 29 September 2015, according to her medical records by that date she had, at best, received a guarded opinion to the effect that her prognosis was uncertain. When on 20 October 2015 C is recorded as stating that she does not want a life dependent on dialysis and of poor quality and apparently dismisses the medical opinion that she has every chance of making a good recovery and leading a fulfilling and normal life, she had the day before been told by Dr V only that there was a “possibility she may” get better and a “possibility she could” return to a degree of normality. Whilst On 3 November 2015, when C again refused dialysis, Dr R was concerned that the main driver of C’s decision appeared to be her categoric belief that the timescale given to her for recovery had passed and that C considered that this meant she would not recover and did not want a lifetime of dialysis, the day before C had been told by Dr N that that no-one could predict how long it would take to recover and no one could tell for sure to what level of function she would recover. On 5 November, when Dr R was concerned that C was stating that “she believes she has no hope of recovery as she is now through the period of expected recovery as described to her. She is unflinching in her belief about this”, according to the medical records Dr L appears to have told C that dialysis may not be a permanent situation and Dr S confirmed to C that there was no evidence of recovery so far and, accordingly, the prognosis was still unpredictable and remained uncertain even if the damage was potentially reversible.
  • Having regard to the foregoing summary, it is clear from the medical records that C was, entirely understandably, not receiving uniformly positive and reassuring information concerning her prognosis, both generally and in relation to the likelihood of her being able to live a life without dialysis. Whilst it is the case that on occasion C received a very positive assessment of her prognosis after incidents of refusing treatment (for example on 29 September 2015, on 21 October 2015, when Professor G explained in the presence of C that “we feel that the patient should get better very soon and that they [her kidneys] could improve any day now” and on 3 November 2015, when Professor G told C that her prognosis was good and that she could “be out with a drink in your hand by Christmas) it is not in my judgment accurate to characterise the prognosis C was being given as consistently positive. Her more categoric responses in respect of her prognosis must in my judgment be seen in this context when determining whether they are probative of an inability to use and weigh her prognosis in her decision making.
  • Further, in my judgment it is also important in this case not to confuse a decision by C to give no weight to her prognosis having weighed it with an inability on her part to use and weigh that information.
  • It is clear that on occasions C’s has expressed herself in terms of categorically rejecting her prognosis in a way which gives the impression that she does not believe or accept that prognosis. However, on other occasions it is clear that her rejection of her prognosis is the result of her having considered it and given it no weight as against other factors more important to her. Thus, on 9 November 2015 C told Dr R that she knew what the doctors were doing and were not angry with them, as they were just trying to save her life but she did not wish to be saved. As I have noted, C told Dr Stevens on 10 November 2015 that “I know that I could get better; I know that I could live without a health problem, but I don’t want it” and that “she had thought a great deal about her medical condition and that, despite appreciating that she has been given a good prognosis, she remains steadfastly determined to die as soon as possible.” Later she told the representative from the Official Solicitor that “They are doing their best to do everything they can for me and unfortunately that is not what I want” and “I know they need to save lives. But I’ve chosen a different route.” As noted, V recalls C telling her on a number of occasions that “she didn’t care whether her kidneys improved or not, and that she had thought about it, and that she wanted to die regardless.”
  • In my judgment these exchanges, and some of those outlined further above, are more consistent with C acknowledging her prognosis and choosing to give it no weight as against other information within the context of her own values and outlook when making a decision than they are with her failing to believe or weigh her prognosis when making her decision.
  • Finally, and within this context, in assessing whether C does have the ability to use and weigh information relevant to the decision in question it is also in my judgment very important to have regard to the fact that, in addition to the position C has taken with regard to her prognosis, she has given a range of reasons for reaching the decision she has regarding further treatment. C has, on a number of occasions, given very clear reasons for not wishing to continue her treatment. These reasons include the risk of a life lived on dialysis, the risk of long term disability, exhaustion with treatment and her wish not to endure further weeks or months of the same, her wish not to continue to endure the symptoms and pain associated with treatment, the risk she will not be able to attain her former lifestyle, her desire not to get old and lose her appearance and her wish to attain her original goal of ending her life.
  • Within this context I note in particular that it is clear from the medical records that C had and has a consistent and specific fear of having to live the rest of her life on dialysis. This expressed fear on the part of C is evident in her medical records. On 22 September 2015 C is recorded as continuing to state that, whilst hopeful of recovery, if her kidneys do not recover and she requires dialysis for the rest of her life she will not wish to live. C repeated this view on 23 September 2015. On 2 November C stated that she could not imagine herself dependent on dialysis and that it would be pointless to continue if she could not recover to a functional level where she could continue with her previous lifestyle. I pause to note that, in the context of the information given to C regarding her prognosis as summarised in Paragraphs 83 to 85 above, these fears on the part of C cannot be considered irrational.
  • Within the foregoing context, I am satisfied that it is not the case that C has undertaken the decision making exercise in relation to dialysis solely on the basis of a concrete or ‘black and white’ view taken in respect of her prognosis but rather on the basis of placing in the balance many factors relevant to the decision. That C considers that these factors outweigh a positive prognosis and the chance of life that it signals may not accord with the view that many may take in the same circumstances, and indeed may horrify some. However, they do in my judgment demonstrate C using and weighing information relevant to the decision in question when coming to that decision.
  • Having regard to the foregoing matters in my judgment the Trust has not proved to the requisite standard that C is unable to use and weigh information relevant to the decision in question such that she lacks capacity to make that decision. In circumstances where the Trust concedes that C meets the other criteria comprising the ‘functional test’ I am satisfied that C is not a person unable to make a decision for herself for the purposes of s 3(1) and, accordingly, does not lack capacity to decide whether or not to accept dialysis.

 

 

 

Having decided that C has capacity to make the decision for herself, MacDonald J did not have to go on to say what decision he would have made as being in her best interests if he had found that she lacked capacity.

 

The Judge did, however hold out an olive branch to C, that he hoped that doctors would still engage with her in discussions and see if she could be persuaded to consent to the treatment, but that the decision was hers and hers alone to make.

 

CONCLUSION

 

  • For the reasons set out above I am not satisfied on the evidence before the court that the Trust has established on the balance of probabilities that C lacks capacity to decide whether or not to accept treatment by way of dialysis.
  • Within the context of C’s stated wish to refuse the life saving treatment which renal haemodalysis represents for her I am acutely conscious of the gravity of my decision. However, as set out at the beginning of this judgment, a capacitous individual is entitled to decide whether or not to accept treatment from his or her doctor. The right to refuse treatment extends to declining treatment that would, if administered, save the life of the patient and, accordingly, a capacitous patient may refuse treatment even in circumstances where that refusal will lead to his or her death.
  • The decision C has reached to refuse dialysis can be characterised as an unwise one. That C considers that the prospect of growing old, the fear of living with fewer material possessions and the fear that she has lost, and will not regain, ‘her sparkle’ outweighs a prognosis that signals continued life will alarm and possibly horrify many, although I am satisfied that the ongoing discomfort of treatment, the fear of chronic illness and the fear of lifelong treatment and lifelong disability are factors that also weigh heavily in the balance for C. C’s decision is certainly one that does not accord with the expectations of many in society. Indeed, others in society may consider C’s decision to be unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general. None of this however is evidence of a lack of capacity. The court being satisfied that, in accordance with the provisions of the Mental Capacity Act 2005, C has capacity to decide whether or not to accept treatment C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society’s expectation of what constitutes the ‘normal’ decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.
  • In circumstances where I have decided that C has at this time the capacity to make the decision in question, this court has no jurisdiction to interfere with the decision making process. Accordingly, although rightly brought, I dismiss the application of the Trust for declarations under the Mental Capacity Act 2005.
  • As I said at the conclusion of this hearing, my decision that C has capacity to decide whether or not to accept dialysis does not, and should not prevent her treating doctors from continuing to seek to engage with C in an effort to persuade her of the benefits of receiving life saving treatment in accordance with their duty to C as their patient. My decision does no more than confirm that in law C is entitled to refuse the treatment offered to her for her benefit by her dedicated treating team. Nothing I have said prevents them from continuing to offer that treatment.
  • That is my judgment.

 

 

I don’t know that C would have been the easiest person to live with, and her decisions aren’t ones that I would make, but I am pleased that the State hasn’t imposed on her a choice that she would have bitterly resented.  I still hope that she might be persuaded, now that she knows that the choice is entirely in her hands, but only if she is persuaded that there is still sparkling to be done yet.

 

Otherwise, to paraphrase the Bard, she has decided that “nothing  in her life quite became her like the leaving it”  and why shouldn’t everyone in life have the chance to make that choice at least ? None of us have any say in how we Enter the stage, but perhaps we get some influence over the manner of our Exit.

 

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About suesspiciousminds

Law geek, local authority care hack, fascinated by words and quirky information; deeply committed to cheesecake and beer.

11 responses

  1. Rather than a lady that sparkles I would say she is an alcoholic. She won’t lack capacity and she would have enjoyed all the drama that surrounded her immensely. Ironically the best thing that can happen is that she loses everything then she may actually seek help and work out that fear is driving her need to sparkle. She may well change her mind and accept the treatment after all. Alcoholic’s whirl through life devastating others,she is a prime example. Unfortunately as heavy drinking is so normalised within our society as well as an alcoholic being thought of as a down and out rather than the driven intelligent individual which they are so often are, it is missed time and again. I have an acquaintance, who was husband number 4 and 6 to such a woman, she is now on number 8 ,who has sold the his home to move in with her. When I questioned him about his former wife’s drinking, it was she only drank a bottle of wine a night , but then she went onto wine boxes because it was cheaper. He doesn’t see her as having a drinking problem though. He has lost his home and has had to go into an IVA after having a well paid job all his life. BEWARE of that glitters is not gold

  2. ashamedtobebritish

    No one should be forced to live against their will, any more than they should be forced to die. Only God decides that

  3. I’d be interested to read any comments on Zoe Williams’s article in the Guardian today that criticises the judge and links this case with those where judges have made foolish comments.

    She says it’s a profession, meaning I think the legal professions as a whole, that has failed to evolve and that is isolated. I do wonder if perhaps a day in the commercial courts might suggest differently but there we are. When people make comments about judges being out of touch, I always remember talking with a woman who had recently done jury service and having heard a fairly run of the mill case said that she was horrified at what had been in the evidence and that she hadn’t known that such things went on. I asked her if she thought that judges are out of touch with society and, apparently unaware of the contradiction, she said “oh yes they are”.

    Then of course there are the family / children cases that I would have thought bring lawyers bang up to date with what’s going on.

    Still, what Zoe Williams says is always worthing thinking about:

    http://www.theguardian.com/commentisfree/2015/dec/02/slur-woman-who-lost-sparkle-c-right-to-die-judgment-femininity-marriage

    • I think that Zoe is usually a good and fair writer, but this piece I didn’t care for at all. It was a bit Daily Mail for me (particularly in relation to the attacks on the daughters and their motivations).

      It seemed extremely obvious to me that the Court was very well aware that C’s outlook on life was highly unusual, but that she had capacity to make those decisions for herself. This absolutely wasn’t a Court commending C for her approach to life, thinking that it was normal, typical or to be expected . I wonder really if Zoe read the case properly. [Or indeed at all]

  4. Beeb now reporting (03/12/15) that she has died on Saturday.

  5. As someone whose Mother took a very similar decision (ten years ago) I am still conflicted. I’m a social worker but I challenged the Renal Consultant on his decision to support the capacitated decision to end treatment. Even so I believe the Consultant was correct and forward thinking. Cant understand how this got to Court?

    • I think because the first two capacity assessments done by staff at the hospital were that she lacked capacity to refuse the treatment – so hospital could have been later sued if they had those assessments but accepted her refusal. It read to me as a serious and genuine issue about whether she had capacity.

  6. Reblogged this on | truthaholics and commented:
    Easy come easy go as this case typifies the sad fact that narcissists, though fully compos mentis, cope just as well with ageing and their own mortality as they do with being held accountable and taking responsibility for their own actions and their effects on others. Correct judgement here in Protection is welcome but the real shame is that genuinely aggrieved parents in Family still get nowhere near as fair a shake at court after so-called expert reports are written about them to simply manufacture risk of future emotional abuse of the child/ren.

  7. Pingback: A life that sparkles | Legal In General | Scoo...

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