As previously reported, 19-year old Sudiksha Thirumalesh died on September 12th after a cardiac arrest in hospital in Birmingham. She had been diagnosed with Mitochondrial Depletion Syndrome (MDS), a group of rare genetic disorders that limit the number of mitochondria inside cells, reducing the cells’ energy.
Sudiksha had impaired sight and hearing loss, chronic muscle weakness, bone disease and damage to her kidneys and lungs. She was mechanically ventilated through a tracheostomy, fed through a percutaneous endoscopic gastrostomy tube and was undergoing regular haemodialysis.
When she died, she and her family were embroiled in a conflict with the Trust treating her. The Trust had applied to the Court of Protection to stop active treatment and move her to end of life care. Her clinicians believed that further therapy was futile.
Sudiksha was aware she was seriously ill but did not know how much confidence she should have in either the diagnosis or prognosis. She underwent the tracheostomy while suffering from Covid and was unsure to what extent her condition was a result of SARS-CoV-2 infection and to what extent it was the result of the MDS. She had also, on at least two occasions, defied her doctors’ expectations that her death was imminent.
Roberts J ruled in favour of the trust. She said Sudiksha lacked capacity to decide what treatment was best for her. Roberts J’s decision was based on her interpretation of the Mental Capacity Act 2005 (MCA).
In her ruling Roberts J correctly referred to the general principles governing capacity set out in section 1 of the MCA:
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.
(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
(6) Before the act is done, or the decision made, regard must be had to whether the purpose for which it is needed can be effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
These principles are very clearly meant to protect vulnerable or potentially vulnerable people. The primary presumption must be that a person has capacity unless proven otherwise.
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… (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.
This section is far vaguer than section1. However, in Sudiksha’s case the Court chose to apply section 2 rather than section 1, to support its belief that she was incapable of understanding the relevant information.
The MCA sets out a two-stage functional test for decision-making capacity. The test attaches to a particular decision made at a particular time rather than a general ability to make decisions.
The test asks:
1) Does the person have an impairment of his or her mind or brain, whether as a result of an illness, or external factors such as alcohol or drug use?
2) Does the impairment mean the person is unable to make a specific decision when he or she needs to?
According to Roberts J, Sudiksha continually failed the test and therefore did not have capacity to decide her medical treatment.
Two Claims
The judge made two key claims in her ruling.
Claim 1: Sudiksha was unable to accept “reliable and true” information about her diagnosis and prognosis because she didn’t believe it and therefore could not “use or weigh” it.
Roberts J cited legal precedent:
80.
In Local Authority X v MM [2007] EWHC 2003 (Fam), Munby J … said …:
“If one does not ‘believe’ a particular piece of information then one does not, in truth, ‘comprehend’ or ‘understand’ it, nor can it be said that one is able to ‘use’ or ‘weigh’ it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information. (emphasis added)
She ruled:
93 […] ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors. Absent that belief, she cannot use or weigh that information as part of the process of making the decision… In ST’s case, an essential element of the process of decision-making is missing because she is unable to use or weigh information which has been shown to be both reliable and true.
(Sudiksha could not legally be named at the time and was referred to as ST.)
Claim 2: Sudiksha had a mental impairment.
ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.
Therefore, despite the section 1 requirement to assume capacity, Roberts J judged that Sudiksha was incompetent to decide what was in her best interests medically.
Yet Roberts J’s narrow perspective does not withstand scrutiny. If a judge is prepared to approve ending life supporting treatment, he or she must make the strongest possible case for the decision. This was not the case in Roberts J’s ruling, which depended on little more than opinion and was scientifically, conceptually and ethically inadequate.
1. Two psychiatrists stated that Sudiksha had capacity.
Both the liaison psychiatrist involved in ST’s case and a consultant psychiatrist instructed by the Trust considered that ST had capacity to make decisions about her future medical treatment, and neither considered that ST had an impairment of or disturbance in the functioning of her mind or brain.
2. Without communicating with Sudiksha herself, Roberts J disagreed with the clinicians, insisting that Sudiksha’s incapacity was likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.
3. There was no clinical diagnosis offered to explain the supposed ‘impairment’.
4. There was no objective proof of the supposed ‘impairment’.
5. Roberts J stated correctly as a matter of law that there was no need for a diagnosis or proof
97. That issue is a question of fact for the court to determine. The wording of s.2(1) MCA itself does not require a formal diagnosis before the court can be satisfied as to whether an inability of a person to make a decision in relation to the matter in issue is because of an impairment of, or a disturbance in the functioning of, the mind or brain. This test is not further defined in the Act. As the court made clear in the North Bristol NHS case, to require a specific diagnosis would not only be undesirable, it would constrain the application of the Act. The court, instead, is fully entitled to have regard to the wide range of factors that may act in any individual case to impair functioning of the mind or brain and, most importantly, to the intricacies of the causal connection or nexus between lack of ability to take a decision and the impairment in question (see paragraph 47). There is thus no requirement for the court to be able to formulate precisely the underlying condition or conditions which constitute the impairment.
6. Accepting just one non-psychiatrist consultant’s opinion, Roberts J assumed Sudiksha’s incapacity stemmed from a mysterious delusion.
Dr. A, whilst accepting that he could find no evidence of psychological disturbance or brain damage, was concerned that “she is unable to weigh up the pros and cons of what he described as ‘a dignified death’”. As such he believes that she is suffering from a delusion which derives from a false reality in that she cannot contemplate her own death. (paragraph 31)
This is a disingenuous use of Dr. A’s opinion at best. Sudiksha could certainly contemplate her own death since in her own words she was determined to “die trying to live”. What then, in actual reality, was this delusion?
7. Roberts J maintained that it is for the court to judge Sudiksha’s capacities “on the balance of probabilities”, a vague criterion that does not require proof
8. False claim – if you don’t believe information is true you cannot weigh it.
Arguably the most peculiar aspect of this troubling judgement is Roberts J’s claim that unless a person believes information to be true he or she can neither use nor weigh it. This is possibly true of concrete information, for example a bus timetable, but for the great majority of information in life it is false. Most information is complex, interrelated, open to interpretation and uncertain to some degree.
This part of her judgment not only eschews common sense but also starts in the wrong place. The initial stage of any autonomous decision-making is not to hold an unquestioning belief in whatever information is to hand, even if someone assures you it is true, but first to assess the merits of that information for yourself. Sudiksha did this, accepted that her chances were slim, but nevertheless did not want to give in and was prepared to ‘try anything’ to survive, as presumably most 19-year-olds would be.
Judge Robert’s claim is also wrong in that it is obviously possible to use and weigh information that you do not believe to be true, or are unsure is true, or doubt is true. A simple example is a weather forecast. If the weather forecast says there is a 60% chance of rain you cannot know if it will rain or not, nor can you know if the 60% chance it will rain is going to affect you, but you can factor this into an informed judgement. You can take a raincoat because it is more likely than not that you will need it, or you can take a gamble and not have to carry it around, based on whatever reasoning you value – past experience, other forecasts from different sources, local knowledge, optimism and so on. In Sudiksha’s case there was a high probability that she wouldn’t survive, which she accepted, but it wasn’t a certainty. The information was there to be weighed, not accepted unthinkingly.
9. Clinical science contradicts the Judge’s assumptions.
Had she researched the scientific evidence rather than rely only on incestuous legal opinions in vacuo, Roberts J would have discovered that she is wrong in her assumptions.
In fact, both diagnosis and prognosis of mitochondrial disease are complex and uncertain:
The field of mitochondrial medicine has only developed over the past 25 years, and clinicians have limited but growing evidence to formulate clinical decisions regarding diagnosis, treatment and day-to-day patient management. These disorders still lack sufficiently sensitive and specific biomarkers. Most current diagnostic criteria were developed prior to the recent expansion in genetic knowledge that allows precise delineation of specific disease etiologies. Establishing a diagnosis often remains challenging, costly and, at times, invasive.
There are no published consensus-based practice parameters that clinicians can utilise for initiating diagnosis or patient management. Most mitochondrial medicine specialists use a set of internally established guidelines based on theoretical concepts, limited published recommendations, and personal and anecdotal experience. As the Mitochondrial Medicine Society recently assessed, notable variability exists in the diagnostic approaches used, extent of testing sent, interpretation of test results, and evidence from which a diagnosis of mitochondrial disease is derived. There are also inconsistencies in treatment and preventive care regimens.
The above quotation is from 2014. The below is current information offered by the NHS:
Diagnostic Challenges
- There are many different clinical presentations within Mitochondrial Disease and the condition often mimics other conditions which adds complexity to diagnosis. For example, problems with eye movement are a common symptom of Mitochondrial Disease however many different diseases cause similar symptoms which inevitably leads to a delay in diagnosis, until other causes are ruled out.
- For some conditions, it remains a real challenge to detect the mitochondrial abnormality. This might be because the biochemical change that we see is very subtle, or alternatively because each patient with Mitochondrial Disease could have any one (or more) of many, many hundreds of possible different causative genetic changes. The identification of these changes can be like searching for a needle in a haystack.
- It is now believed that about 2,000 proteins (or building blocks) are required to make a mitochondrion work. A defect could theoretically affect any of these building blocks and many of the building blocks themselves have not been properly identified in human subjects. This means that both doctors and scientists still have a lot to learn even about the way mitochondria work. Finding abnormalities of mitochondrial function, defining the pathological (disease causing) mechanism and developing treatments, remains something which is being actively pursued in many large centres around the world (including the centres providing the NHS Rare Mitochondrial Disorders Service).
The fact is that there is no objective test for the syndrome and no consensus about the clinical signs. There is a battery of tests that can be done, and there is a strong likelihood that certain sets of results indicate mitochondrial disease. However, as in many branches of medicine, absolute certainty is not possible with mitochondrial disease, therefore Roberts J’s claim that Sudiksha was unable to accept a reliable and true diagnosis is false. Given this, the rest of her ruling collapses.
Sudiksha thought she was suffering from ‘Long Covid’, having previously suffered a SARS-CoV-2 infection. There is no objective test for ‘Long Covid’ either, as is true with many other post-viral syndromes. We are, therefore, left with a choice based on inconclusive evidence in both cases.
It is very clear from what her family has said, and from her own words, that Sudiksha weighed up all the information as part of her decision-making process and partially resisted it on the reasonable and evidence-based ground that she thought it could be wrong.
10. Roberts J is factually wrong to assert that Sudiksha was completely denying the reality of her condition.
In fact, Sudiksha was aware of the possibility her doctors were correct. She wanted to travel to the States in order to have nucleoside therapy for MDS. If she really had “complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information” then she could not have contemplated this option.
11. On her own terms Roberts J lacked decision-making capacity for this judgement.
The fact that Sudiksha’s capacity was denied by Roberts J without evidence raises a question about the credibility of her own reasoning. Given that her ruling was demonstrably based on a false belief that the information about MDS was “reliable and true”, it might be argued that Roberts J did not have capacity, whereas Sudiksha did.
In questioning the diagnosis, Sudiksha was supported by a considerable body of published research. In contrast, Roberts J relied on the opinion of a single doctor while choosing to disregard the opposite opinions of at least two other clinicians, without adequately explaining why.
If making decisions based on denying ‘true information’ is evidence of incapacity, in this instance this must also apply to the judge.
12. A person must be assumed to have capacity section 1.
The bottom line is this: in law a person must be assumed to have capacity to make decisions unless there is clear medical evidence to the contrary. In the absence of this he or she is sovereign over her choices. If anyone thinks she is wrong that is for him to believe if he wishes. But it is not for him to prevent her making those choices, unless to do so will cause predictable and direct harm to another.
Conclusion
The MCA was misapplied in the case of Sudiksha Thirumalesh
Possibly in an attempt to cement more extensive powers for the Court of Protection, the ruling of Roberts J misapplied the MCA. It also advanced a significantly overreached interpretation of lack of capacity with disturbing implications for human rights. Ethically, the Court caused avoidable distress to a young woman and family already contending with devastating circumstances.
In many cases on which the Court of Protection rules, the patient’s lack of capacity is obvious, and it is legally and ethically right to act in his or her best interests. But in Sudiksha’s case her capacity was no different from the general citizen’s. She was able to define her own best interests for herself.
There were no grounds, legal or scientific, to override Sudiksha’s judgement, whatever Roberts J thought about it.
The court was protecting the Trust rather than the patient
The judgment is heavy on legal opinion, light on evidence and appears to ignore ethics altogether. Early in the case, aware there was a disagreement between the trust and the family, the Court made a ‘transparency order’ preventing Sudiksha being named. She and the family did not want this order because they wanted to use crowdfunding to pay for experimental treatment overseas.
The result was protection from possibly negative publicity for the trust rather than protection of Sudiksha’s best interests. Once able to speak publicly, after Sudiksha’s death, the family said they felt “gagged” and “intimidated” by the court order.
The job of the NHS Trust is to create autonomy in patients using clinical and social care. The trust must be ‘patient centred’ and respect the choices of people with capacity. Taking a competent patient suffering a tragic illness to court completely undermines the ethical concepts it should have been using.
Dangerous and far-reaching implications
If a Court is allowed to override capacity for decisions when incapacity is not proven, this potentially allows the state to override decisions made by any citizen with normal capacity. It sets a disturbing precedent in medical care. And given the erosion of our rights since 2020 it is not unthinkable that it might be extended to broader decisions, for example publishing or teaching scepticism about anthropogenic climate change, or challenging Covid vaccine safety and effectiveness.
Where there is no evidence of impairment a person must be allowed to express and act on what he or she believes. This is what the Court of Protection exists for.
Roberts J said:
As the court made clear in the North Bristol NHS case, to require a specific diagnosis would not only be undesirable, it would constrain the application of the Act.
But it is for the very reason that the application of the Act would be constrained that the Act must be amended to require a specific diagnosis. It is not acceptable that judges who have no clinical experience are able to ignore the views of experienced psychiatrists to override a human right based merely on their unsubstantiated bias. The spirit and principles of the MCA exist to protect and support patients, not persecute them.
In a statement published after her death, Sudiksha wrote that she is a victim of “toxic paternalism”:
By the time you read this, I could be dead. That’s according to my doctors who, for the last year have repeatedly told me that I have had only days to live.
They’ve done everything they can to stop me telling this story… but lying here in my hospital bed, I’ve managed to dictate this message.
I have found myself trapped in a medical and legal system governed by a toxic paternalism which has condemned me for wanting to live.
But I am a fighter and will continue to fight… I am in a race against time to escape from this system and the certain death it wishes to impose on me.
Recommendations
- If it is claimed that a subject has an impairment of, or a disturbance in, the functioning of the mind or brain, the MCA and Court of Protection should require a clinical diagnosis from at least two registered practitioners, and if there is any disagreement then the benefit of the doubt should go to the patient.
- The five MCA principles should override any Court decision likely to undermine them.
- A requirement to exercise and demonstrate compassion should become a sixth principle.
David Seedhouse was the first lecturer in medical ethics to be appointed to a U.K. university in the 1980s. He is currently Honorary Professor of Deliberative Practice at Aston University.
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