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.
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I do not mean to trivialise ST’s case with the following analogy, quite the reverse. I hope to use the judgement against her to show how dangerous it is.
Imagine a dispute about any of the recent big political issues: Brexit, Net Zero, Covid, Wokery or any of the other more mundane issues (taxation, for example). If a case came before a court, albelit not a family court, but can we tolerate a judge denying civil rights on the basis of
“I find on the balance of probabilities that voters’s complete inability to accept the political / economic reality of there position, or to contemplate the possibility that the politicians may be giving them accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, there mind or brain.”
Just imagine.
ST was badly judged.
I have no idea whether she could have been helped overseas but it is not for the state to decide.
I struggled a bit to understand exactly what effect the ruling had on her. The hospital treating her seemed to want to stop doing so because according to them she would die very soon anyway – I presume this is simply to save scarce resources? I suppose that’s potentially justifiable because resources cannot be unlimited.
Imagine a case where someone REFUSES treatment that will almost certainly help them because they’ve gone mad. You might well feel that ignoring their wishes is justified – though of course you have to trust the people who define “mad”. But saying someone is incompetent because they want more/different treatment that might help them just because some doctors (who have an interest in limiting their expenditure) disagree is very concerning to me on the face of it.
“scarce resources?”
Now, now tof can we have less of the oppressors language? The word you are looking for is MONEY, of which the NHS has no shortage whatsoever. DIE jobs anyone?
Yes that’s a fair point from you and RW, though even a very efficiently run healthcare provider will always have to ration care, treatment if it’s free at the point of use, and insurers won’t pay for stuff forever either. I was more thinking of hypothetical cases relevant to this judgement – but as I said, I am not sure I like this judgement at all.
I think it’s best to leave the abstract issues (resource allocation) out of the picture here. The facts of the situation are: Technically, this woman died in August last year when her chest muscles and kidneys failed. The NHS, doubtlessly already aware of her condition, chose to keep her alive by using machines to provide the essential functions her body was no longer capable of providing on its own. She was putting hopes into an experimental treatment which might be available in the USA. Someone else, however, decreed this wasn’t value for money and instead proposed to drug her until she lost conscience and then simply switch the machines off and let her die. She was then judged mentally incompetent to make her own health decisions because she didn’t agree with this proposal.
I’ll leave that as it stands.
“She was then judged mentally incompetent to make her own health decisions because she didn’t agree with this proposal.”
Yes, that’s the troubling part.
I’ll also offer an opinion on that: They should have let her die in August 2022, possibly with some pallative care (a horrendous euphemism for put her down with drugs) and everything would have been fine (or as fine as it can be in those circumstances). But making her regain consciousness and keeping her alive for months in order to come up with something like this is an monstrously inhuman cruelty, no matter how misguided her own hopes might have been. No mentally sane human being can be expected to agree with something like this and no mentally sane and at least remotely decent human being would ever ask someone to.
And basically one judge decides her fate – you are wasting our time for being stubborn. Listen to your doctor you you die. Is this how the world operates today? Sad and tragic.
What’s appalling is the senseless cruelty of the whole procedure. If she was on death’s door, anyway, why not just let her die in peace? Why go to her and tell her “We have decided that you’re a useless drag on our finite resources which could be put to much better use by hiring more diversity champions to improve the lived experience of people of colour in our cherished NHS … erm … scrap that, I didn’t realize that this would include you. Anyway, we’re going to kill you now after drugging you senseless! Have fun dying!”
If she would have died soon, anyway, little finite resources could be saved here by the National EDI Consultant Hiring Service. The NHS wastes tons of money on all kinds of dubious political causes. It can’t be so resource-strapped that it must resort to killing people prematurely because of this.
IT did not kill her prematurely. She would have died a long time prior to August 22 had they left nature to take its course. IT kept her alive unnaturally.
It’s hard to believe that people aren’t able to grasp how terminal this illness is, how interminable the pain and suffering is and how palliative care is NOT a euphemism for euthanasia. What would you have them do? Not treat the pain and suffering? Really? Please stop and think for just one minute, what it would be like to rely on someone for Absolutely Every Single bodily function. At the end, not even able to swallow or blink. It would have had nothing to do with money or resources, but all to do with the futility and cruelty of allowing her non life to continue.
IT did not kill her prematurely. She would have died a long time prior to August 22 had they left nature to take its course. IT kept her alive unnaturally.
That was the inevitable outcome of putting her on live support: She was going to remain alive. The NHS could have chosen not to but then, someone wouldn’t have been able to bill someone else for that. And please don’t generalize my statements until the encompass the whole universe in an vaint attempt to refute them with phrases: This patient very specifically didn’t want to be drugged senseless and then killed by switching off life support. That was her conscious choice and hence, your waffling about how she should have been glad about this because of her so debilitating illness is seriously out of place. If you want to kill something to make yourself feel good about yourself, try a pet. You could perhaps break its spine with a kick before this to fake a necessity. People in my circle of acquaintances have very likely done that. But vets don’t ask uncomfortable questions about this.
The rukling took away her freedom to chose.
Choose what?
Aktion T4 – “Certain German physicians were authorised to select patients “deemed incurably sick, after most critical medical examination” and then administer to them a “mercy death” (Gnadentod)”
https://en.wikipedia.org/wiki/Aktion_T4
Can you see it yet?
What? Everybody and his dog bring up Nazi-this and Nazi-that on every occasion to support whatever is current political pet cause happens to be.
One might think that given recent events since 2020, a fair bit of what we have witnessed has some simmilarities to events 80 years ago
some examples
The articles above refer to unvacinated people but does it not strike some sillimarites of facism?
We should learn from history.
In this tragic case, medical assisstance was deliberately withdrawn despite her wish to die trying to live. When medical assitance is withdrawn, the outcome was predictable.
I’ve already quoted this once but it fits in here nicely again: If your only tool is a hammer, every problem looks like a nail. And likewise, if the only thing that’s in your mind is NAZIS!, everything will look like what you believe (and usually wrongly believe) about Germans (let’s drop the silly pretension of something else being meant here — it ain’t so) to you. Which means you’re probably not going to make much sense on any particular topic, explicitly including history.
I understand your need to speak up for the better parts of your nation but attempting to ignore what happened 80 – 90 years ago is colouring your judgement. Badly.
A reportedly singular event in human history cannot be everybody’s political small change at the same time.
I suspect the screeching of ‘NAZI’s’ these days is more of something delivered from the so called ‘Far Left’. We don’t need to concern ourselves with semantics and the fact that events 80 years ago revolved around Germany does not dilute what we see today. Regardless of nation states, we are aware of what fascism is.
Let us remember who funded the WW2.
This is relevant to the discussion.
Yes. The Nazi legacy has left a template for industrialised, mass population murder – genocide / democide, which the UN and WEF are eagerly refining.
Did you know that Arthur Harris was planning to genocide Germans by scientifically planned and industrially executed nightly firebombing raids? His actual achievements remained far short of that but this certainly wasn’t for want of good intentions: Millions of German were supposed to burn to death. But the technology wasn’t quite there yet.
Agreed
“Did you know that Arthur Harris was planning to genocide Germans by scientifically planned and industrially executed nightly firebombing raids?”
I consider myself reasonably well read on WW2 history so the answer to your question is Yes.
Exactly.
The crux of the argument relies on the term “reliable medical information”. The last 4 years have shown that there is no such thing; neither doctors, nor “medical knowledge” can be relied upon. The whole basis of medicine is corrupted by vested interests and dogma, mediated by weak-willed easily-led individuals incapable of critical thought.
Mix medical issues with the legal system and the individual stands no chance.
Judge Roberts J. is incompetent and a murderer.
On the gagging order – what sanctions were they proposing exactly if the family went public?
God forbid I ever have to face such a situation but there is one promise I can make
….Don’t even think you will shut me up.
The gagging order is what really worries me. No one, or their family, should have to go through this in a civilised society. We should all be able to make our case and fight for our cause openly. Along with so many things that have happened in the last few years to destroy our society and democracy, we must not forget just how cruel and scheming our ruling classes have become.
Hi EppingBlogger
You are more right than you know in your comment here about the wider implications of this kind of decision:
“I find on the balance of probabilities that voters’ complete inability to accept the political / economic reality of their position, or to contemplate the possibility that the politicians may be giving them accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, there mind or brain.”
This is and has already been happening all the time in the courts and it is also part of the routine cancelling of people and the failure of the legacy media to report.
It is why DS exists – to report what is not being reported in the legacy media.
Those of us who know the facts are the loonies and tin foil hatters and the conspiracy theorists and the State and its mouthpiece the BBC and the legacy media spread misinformation and disinformation and the judges in the courts side with them against us.
It happens when Andrew Bridgen stands up in Parliament backed by scientific facts and figures and when the disgusting Penny Mordant calls him a conspiracy theorist. [I won’t adopt Laurence Fox’s approach by discussing whether anyone would want to shag her.]
It happens when families of the Covid vaccine dead and injured march in their thousands in London to protest about what was done.
It also happens when there are disputes between parents over vaccination or in the Court of Protection when family objects to vaccination and the doctors insist.
In [from memory] January this year there was a huge demonstration outside the BBC’s Broadcasting House in London – tens of thousands of people demonstrating against the BBC’s and other legacy media’s blackout on reporting covid deaths and injuries.
Was it reported by the BBC – or any other legacy media? Nope.
Did you see this recent event reported in the media again with tens of thousands marching and demonstrating:
The Worldwide Freedom Rally & I Will Not Comply campaigns 23rd September 2023 in London.
If you did see anything in the legacy media about this:
The Worldwide Freedom Rally & I Will Not Comply campaigns 23rd September 2023 in London.
it was reported as an anti-ULEZ protest and not what it was.
And when these events occur in multiple towns and cities around the UK on the same day it does not get reported.
If anyone wants to know more about these events this is the link to the organiser’s Telegram channel:
https://t.me/FionaCoviLeaksOfficial
I’ve been in the unfortunate position of knowing 2 young women who died of MDS. They were identical twins. One died in NZ at the age of 28, her sister died 4 years later in South Africa.
It’s horrendous.
There is NO cure at this time.
Resources are not infinite.
All treatment can do is delay the inevitable while they go through a living death.
I know how hard it is for parents to accept that there is no cure, and hope is all they have, but the alternative to palliative care is worse and cruel IMO.
I gather that Sudiksha wanted to die trying to live. I cannot say that I would want to die the same way, but then I am not Sudiksha.
I have a single question
How closely related were her parents before they married?
You’re toys in the attic if you don’t trust our doctors. We’ve made sure all the doctors do what we tell them and think what we tell them to think. You’re toys in the attic if you don’t trust the Party, comrade. Trust the Party. Trust the Science. Take the medication. If you don’t take the medicine, you’re toys in the attic, and we’ll hold you down and give it to you. For the Common Good.