Aged just 19, Sudiksha Thirumalesh died on September 12th after a cardiac arrest in hospital in Birmingham. She had been suffering from Mitochondrial Depletion Syndrome (MDS), a group of rare genetic disorders that limit the number of mitochondria inside cells. Mitochondria are the parts of cells that power their function by breaking down fuel molecules. Often referred to as ‘cell batteries’, mitochondria create more than 90% of the energy in our cells. In MDS, fewer functioning mitochondria produce less energy, restricting the cells’ proper process.
In Sudiksha’s case, MDS affected her hearing, sight, muscle strength, bones and other organs to such an extent that she depended on ventilator and dialysis support in the hospital’s critical care unit from early August last year.
According to the Hospital Trust, Sudiksha’s illness was incurable and progressive, and there was no known effective treatment. Sudiksha and her family disagreed, hoping to raise funds to enable her to travel to North America for experimental nucleoside therapy that has been shown to help other patients. Sudiksha considered this her last hope: “I want to die trying to live. We have to try everything.”
Unfortunately, Sudiksha’s last year of life was marred by a dispute between the Trust and the family which escalated to the Court of Protection. The Court anonymised Sudiksha, her parents and the clinicians by means of a Transparency Order which, rather curiously, is an injunction meant to achieve precisely the opposite since any public reporting must preserve the anonymity of the parties involved.
This meant that Sudiksha could be known only as ST and made it impossible for her to be identified in any fundraising campaign to pay for her travel and possible treatment.
Her clinical team took the view that Sudiksha was in, or was fast approaching, the final stage of her life. Accordingly, the Trust initiated court action to be allowed to cease Sudiksha’s life-preserving treatment against her wishes and offer palliative care only.
The judge in the case, Roberts J, referred to the Mental Capacity Act (MCA) arguing:
84. In this case I accept that ST is aware of the nature of her disease in terms of it being a mitochondrial depletion syndrome which is rare. She knows that she is one of few people in the world to have the disease. I further accept that she knows the disease by its nature is progressive and she recognises that, at some point in the future, she may succumb to its effects and die. What she fails to understand, or acknowledge, is the precariousness of her current prognosis. She does not believe that her doctors are giving her true or reliable information when they tell her that she may have only days or weeks to live. She refuses to contemplate that this information may be true or a reliable prognosis because she has confounded their expectations in the past despite two acute life-threatening episodes in July this year and because she has an overwhelming desire to survive, whatever that may take.
85. As to the ‘truth’ or reliability of the information which ST is being given by her doctors, I am quite satisfied on any objective basis from the body of medical evidence before the court that it is the mitochondrial disease which is causing the progressive failure of her respiratory muscles and the general deterioration in her overall condition. It is not the residual after-effects of Long Covid as ST believes it to be.
Because Sudiksha would not accept “reliable medical information” the judge ruled that she was not competent to make the decision to continue her treatment, meaning that the Trust could legally stop it.
To lay eyes this seems contrary to the MCA, which advises:
- assume a person has the capacity to make a decision themselves, unless it’s proved otherwise
- wherever possible, help people to make their own decisions
- do not treat a person as lacking the capacity to make a decision just because they make an unwise decision
- if you make a decision for someone who does not have capacity, it must be in their best interests
- treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms
The MCA sets out a two-stage test of capacity:
1) Does the person have an impairment of their 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 they need to? People can lack capacity to make some decisions, but have capacity to make others. Mental capacity can also fluctuate with time – someone may lack capacity at one point in time, but may be able to make the same decision at a later point in time.
Where appropriate, people should be allowed the time to make a decision themselves.
These clear instructions meant that Judge Roberts had to work hard to show that Sudiksha was incompetent. Two court appointed psychiatrists had already testified that she did in fact have capacity. One noted that she was “comfortable, smiling, alert and in clear consciousness”. Despite this, Judge Roberts maintained that though Sudiksha had general capacity she did not have capacity over this particular decision, arguing that in order to be able to use or weigh relevant information one has to believe that the information is true. Since Sudiksha did not believe it, she was not able to make an informed judgement.
Judge Roberts accepted that ST did not suffer from any recognised psychiatric or psychological illness. Nevertheless, she declared:
103. In my judgement, and based upon the evidence which is now before the court, I find on the balance of probabilities that 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. Her vulnerability has been acknowledged by Dr C. I need no persuading that she has been adversely impacted by the trauma of her initial admission to hospital.
Quite how she arrived at this conclusion as a non-clinician is unclear.
Possibly because she recognised that she was offering a sweeping judgement, the judge was at pains to argue that her ruling was “fact specific” and could not therefore be generalised into a rule. She did not want her verdict to be read as equating to the simple formula: ‘patient believes what doctor is saying => patient has capacity; patient does not believe what doctor is saying => patient does not have capacity.’
However, this is exactly what the ruling does. We all have capacity to make some decisions and lack capacity to make others. Most of us don’t want to die, at least not yet, and most of us would wish to try any possible cure available to avoid death. To argue that Sudiksha was irrational to want to try, even with huge odds stacked against her, may possibly be legally sound but it plainly goes against our basic survival instincts.
It is tempting to make a case, as others including Jacob Rees-Mogg have made already, that this case rests on a fundamental matter of individual choice, and that preventing this choice is a paternalistic breach of an essential human right. But this would be an oversimplification of a tangled can of worms, where there are many different perspectives, each with their own merit.
Judge Roberts has a point and was I think doing her best to interpret the law to resolve the matter in a way that would have allowed Sudiksha to come to terms with her situation. However, as Andrea Williams, Chief Executive of the Christian Legal Centre, has said:
This profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the Courts. There is an urgent need for a more open and transparent system. Justice is done in the light and not behind closed doors.
We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence.
This case should be a wake up call for the Government to set up an urgent Public Inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases.
If this were to happen it would be a fitting legacy to Sudiksha’s brave struggle. These difficult matters should not be hidden if the patients concerned do not wish them to be secret, nor should they be left to the opinion of a single judge.
That is not to say that they should be sensationalised in the media, but there should be mechanisms to enable patient preferences and to balance evidence and values sensitively. As it was, Sudiksha’s family felt “gagged” and “intimidated”.
Sudiksha’s brother, Varshan Chellamal Thirumalesh, said:
After a year of struggle and heartache we can finally say our beautiful daughter and sister’s name in public without fear: she is Sudiksha. She is Sudiksha Thirumalesh not ST.
Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace. Sudiksha was a wonderful daughter and sister whom we will cherish for ever. We cannot imagine life without her.
We seek justice for Sudiksha today, and for others in her situation.
There was no need for the family to have to endure the extra stresses. Surely there are better ways to handle such distressing situations. There is a tendency for disputes about healthcare to become adversarial, but it simply must be possible to handle these differences in better more creative ways. As Oscar Mathew writes:
Conflict between health professionals and patients has attracted increasing public attention in the last few years and even more so in the past 12 months. Some recent high profile public cases, such as those of Aysha King and Alfie Evans, have involved an apparent breakdown in relationships between the parents of children for whom no beneficial treatment was available and the clinical teams in charge of their care.
In many cases, these tragic situations are managed by careful discourse between doctors and healthcare staff. However, where disagreement results in an application to the courts, the same question is often asked: what has caused the conflict to escalate to the extent that it has, and could it have been avoided? …
Mediation involves a neutral party – one or more mediators working with those involved in a conflict with the aim of achieving resolution and improving relationships.
A mediation involves certain non-negotiable elements. It is voluntary to all parties at all times, and it is a confidential process. The mediator is neutral; their role is to give the parties space to explore their conflict, and to try and find a solution that all can accept. The mediator doesn’t provide solutions, but helps the parties identify solutions themselves and can help steer them through the process of conflict resolution.
Whether the Court of Protection would value mediation is an open question because mediation itself requires capacity and the Court is for people who lack it. However, part of the Court’s role is to appoint “deputies to make ongoing decisions for people who lack mental capacity”, and this concept could be extended to allow shared deliberation.
Whether involving the people directly concerned themselves or their deputies, mediation could become part of the decision-making process, even a legal requirement. Perhaps, if our legal systems are prepared to embrace the possibility that there are fairer and kinder solutions than those they currently offer, thoughtful mediation might evolve into Sudiksha’s Law.
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.