The judgement regarding C’s right to decline life-preserving dialysis (following a paracetamol overdose) is as fascinating and instructive as it is tragic. I have taken out some phrases and sections that caught my eye, adding my own comments along the way. The judge’s words are in italics, quotes from witnesses in quotation marks.
The judge begins with a remarkably vivid but moralistic, almost scornful character description (both in my view, and that of Guardian writer Zoe Williams). It sets the scene for C’s subsequent strong-willed approach to decision making.
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.
Previous decision making
C’s response to previous illnesses is explored. Her behaviour back then is important, because the judge draws a line from the past to the present; if she had capacity to make medically eccentric – or unwise – decisions then, why not now?
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.
Her daughter comments:
“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”.
Prognosis and treatment against a person’s will
Onto the testimony of the professionals. A specialist explains that the likely prognosis,
‘remains excellent with survival fully anticipated’. However,
Dr L estimates that if C’s [renal function] 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.
i.e. – if her kidneys don’t get better soon, she is looking at a life of dialysis three times a week.
If she continues to refuse dialysis, is it possible for her to be made to have it?
…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.
This illustrates how, despite all the theoretical discussion about capacity, at the end of the day a patient can easily turn away from treatment that she does not want. We see similar situations in general medicine, for instance when elderly confused patients without capacity are deemed (in best interests meetings) to be appropriate for nursing home or residential home. If they don’t want to go, they won’t!
Unwise decisions ≠ unsound decisions
The wisdom of C’s decision making leads to an interesting discussion. The judge clarifies that a person who makes an unwise decision which appears so ludicrous as to be, in our eyes, evidence of a disordered mind, cannot be assumed to lack of capacity;
…the fact that a decision not to have life-saving medical treatment may be considered an unwise decision and may have a fatal outcome is not of itself evidence of a lack of capacity to take that decision, notwithstanding that other members of society may consider such a decision unreasonable, illogical or even immoral, that society in general places cardinal importance on the sanctity of life and that the decision taken will result in the certain death of the person taking it..
Capacity is actually, in the words of a previous judge, “the capacity actually to engage in the decision making process itself and to be able to see the various parts of the argument and to relate one to another”.
Thus, …a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to that information in making the decision in question and chosen to attach no weight to that information in the decision making process.
Now the judge, having heard testimony from medical staff who looked after the patient, questions their ability to assess capacity objectively.
…the court must be aware of the difficulties which may arise as a result of the close professional relationship between the clinicians treating, and the key professionals working with… in cases of vulnerable adults, there is a risk that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.
Presumably he is saying here that a group of clinicians who have invested so much effort and expertise is ‘saving’ a patient are not the best people to comment on whether it is right for that patient to make a decision that will lead to death. This I find controversial, but is of course why clinicians must send such difficult cases to the Court of Protection.
Psychiatrists vs the judge
There follows some detailed analysis and comparison of psychiatric reports, focussing on a possible personality disorder, and on C’s ability to retain information and weigh it up (critical elements of mental capacity). C is said to express an “an overvalued idea that her quality of life will not improve and that she can die in a hospice.” A psychiatrist “…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. C considered that this meant she would not recover and did not want a lifetime of dialysis.”
The psychiatrist concludes that “She is unflinching in her belief about this. I think this could be significantly influenced by her personality traits and as such are affecting her ability to use and weigh evidence presented to her thereby affecting adversely her ability to make a capacitous decision.”
In addition, again according the psychiatrist, “This unexplained and seemingly irrational decision is not met with significant using and weighing demonstrably ending with a capacitous but objectively assessed unwise decision.” C is unable to take “a balanced, nuanced, used and weighed position”.
Junior doctors – every note counts!
Now reference is made to notes made by junior doctors on the team. I found this interesting because it reinforces the point that the opinion of any qualified person has value and may be used in such complex cases. The judge refers to notes made by SHO’s several times, and these notes, being supportive of the judge’s final conclusion, were clearly important. For instance,
On 18 October 2015 Dr K (SHO) considered that C displayed capacity when expressing her wish to forgo further treatment and to move to a hospice. On 19 October 2015 Dr V recorded that C displayed signs indicative of capacity (understanding, weighing up, retaining and repeating information) although capacity was not clear cut…
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.
The patient’s words
What of C’s account. At one point she said,”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.”
“I don’t want to do weeks or months of this…I have been through horrible stuff. I am not prepared to do that again. They are doing their best to do everything they can for me and unfortunately that is not what I want”
“I am not prepared to wait for the possibility that my kidneys will get better”
“Everything is ‘ifs and ands and pots and pans’. My quality of life won’t be what I want. I will be a burden”
“No, I’m not going to have weeks of this. I am at peace with myself”.
“I want someone to say I can’t do this anymore. Everyone makes a choice. It would be nice if they could give me some choice. I am not getting any choice. I am getting wheeled along. It’s a bit unfair.”
The judge then explains his interpretation of the ‘risks’ (or burdens) of ongoing 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.
The importance given to wider goals, beyond survival, is a particularly interesting point.
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…
C has an impairment of, or a disturbance in the functioning of, the mind or brain, the evidence as to the precise nature of that impairment or disturbance was far from conclusive. Further, and more importantly, with regard to the question of causation, and in particular whether what was being seen might be the operation of a personality disorder or simply the thought processes of a strong willed, stubborn individual with unpalatable and highly egocentric views the evidence was likewise somewhat equivocal.
Finally, I of course bear in mind that my decision does not accord with the considered opinions of two very experienced psychiatrists.
Conclusions and reflection
The judge finds that,
As a capacitous individual C is, in respect of her own body and mind, sovereign.
Accordingly, although rightly brought, I dismiss the application of the Trust for declarations under the Mental Capacity Act 2005.
What should healthcare workers take away from this? It’s an extreme case which was resolved in the venue of last resort, the Court of Protection, so it is unlikely that its lessons are translatable into everyday practise. So how does it help medical professionals when they find that their advice begins to diverge from the stated goals of the patient? The first instinct, when patients ask for things that make no sense, is that they are not right in the mind. Their capacity becomes questionable. The judge here provided an interesting analysis of how assessment of capacity can become circular: her goals are not consistent with a sound mind, therefore we must doubt the mental processes that have developed those goals.
Secondly, I find myself feeling for the clinical team. It is easy to criticise them for ‘taking it all the way’ to the courts, and for allowing themselves to engage in a legal battle with the patient. I don’t read it this way. The preservation of life was of course their primary aim during C’s acute illness, but as it became clear that she did not want ongoing life-preserving interventions what else were they to do? Accept it straight away? Try to persuade her – at risk of being seen to coerce her? The decision is too huge, the outcome too profound, for doctors to take the burden on themselves without legal help. In the end the judge made the decision, and that sounds right. He is above criticism, legally (probably).
Another point – the significance of the SHOs’ notes. Junior doctors, as we all know now following recent contact issue, are not so ‘junior’ as to see their opinions and observations overlooked. Here, they featured as prominently in the judgment as two consultant psychiatrists.
Finally, as a supporter of assisted dying, I cannot help but make comparisons with the current legal position for terminal ill patients. The judge’s great respect for personal ‘sovereignty’ – the right of protection from interference on one’s person (e.g. a dialysis catheter), would appear to add legal weight to other patients’ rights of autonomy and control over their own deaths. But no: while this judge concludes that no-one has a right to extend C’s life against her will, no judge in the land would conclude that she had the right to pro-actively end her own life, or be assisted by a physician. Sovereignty does not help there.