Thirumalesh Chellamal Hemachandran v Sudiksha Thirumalesh (Deceased) (by her litigation friend, The Official Solicitor)

Hearing dates: 2–3 May 2024

Approved Judgment

This judgment was handed down remotely at 11.00am on 31 July 2024 by circulation to the parties or their representatives by e-mail and by release to the National Archives.

Introduction

Sudiksha Thirumalesh (“Sudiksha”) died on 12 September 2023. She was 19 years old. She was born with a rare mitochondrial disorder known as Mitochondrial Depletion Syndrome RRM2B (“RRM2B”), a chronic degenerative disease with no known cure.

On 20 July 2023, University Hospitals Birmingham NHS Foundation Trust (“the Trust”) made an emergency application to the Court of Protection asking the court to approve a palliative care plan for Sudiksha and for her life sustaining treatment to be withdrawn.

The issue which came before the late Roberts J (“the judge”), namely Sudiksha's capacity to make decisions in relation to her medical treatment, was both unusual and difficult and is central to this appeal. Whilst the medical evidence was overwhelming that Sudiksha was in multi-organ failure and nearing the end of her life, she was fully conscious and able to communicate through a voice box. She was adamant that she wished to have the opportunity to be considered for experimental nucleoside treatment in America or Canada. She wanted to “die trying to live”.

On 7 August 2023, the judge made a declaration that Sudiksha lacked capacity “to give or withhold her agreement to medical treatment including palliative treatment”.

The court having decided that Sudiksha lacked capacity to make decisions about her medical care, the case was listed to be heard on 23 October 2023 with a time estimate of two days in order for the court to “determine [Sudiksha's] best interests in terms of medical treatment”.

In the event, no best interests decision was ever made by a court as Sudiksha died only 35 days after the declaration was made. Her end-of-life care was provided under the terms of a treatment plan (“the treatment plan”) without any judicial intervention. The plan had been agreed with Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh (“the parents”) some months previously in May 2023.

On 5 October 2023, Sudiksha's parents (who had been the 2 ^nd and 3 ^rd Respondents in the Court of Protection proceedings) issued an Appellant's Notice seeking permission to appeal against the declaration of incapacity. Notwithstanding that Sudiksha's death meant that the appeal was academic, I granted permission to appeal and in due course, also permission for MIND to intervene.

Mr Bruno Quintavalle represented the parents, Katie Gollop KC and Olivia Kirkbride represented the Official Solicitor, Vikram Sachdeva KC, Catherine Dobson, and Isabella Buono represented the Trust and Alex Ruck Keene KC and Neil Allen represented MIND.

Having heard extensive submissions from the parties and from MIND, I would allow the appeal. It follows that the declaration made by the judge on 7 August 2023 that Sudiksha lacked the capacity to give or withhold her agreement to medical treatment, including palliative treatment, will therefore be set aside. That being the case, the presumption of capacity contained in section 1(2) Mental Capacity Act 2005 (“MCA”) means that Sudiksha is presumed to have had the capacity to give or withhold her agreement to medical treatment, including palliative treatment, at all times leading up to her death.

In reaching that decision, I should be clear that I make no criticism of the judge who demonstrated the same care and compassion in this case as she did in every case she heard during her time as a High Court Judge before her untimely death. The decision she reached was in part, at least, influenced by an established legal approach to the relevance of a patient's belief in their illness and prognosis. That approach is, for the reasons set out in this judgment, wrong and contrary to Court of Appeal authority.

Background

All who came into contact with Sudiksha agree that she was a remarkable young woman: hardworking, determined, and resilient. Supported by her parents and brother, she had managed to attend a mainstream school where she was studying for A levels. She did this notwithstanding her significant and deteriorating health problems which included: impaired sight, hearing loss, muscle weakness, bone disease, gut dysmotility issues, end stage renal failure, and lung damage.

On 1 August 2022, Sudiksha was admitted to the Intensive Care Unit (“ICU”) at the Queen Elizabeth Hospital in Birmingham with community-acquired pneumonia and Covid which had led to respiratory arrest.

On her admission to the ICU, the treating clinicians were unable to extubate Sudiksha and as a consequence, she remained on mechanical ventilation via tracheostomy, fed by PEG and with dialysis every alternate day until the end of her life.

By 31 March 2023, the Trust's multi-disciplinary team were recommending that Sudiksha should be moved to a palliative care treatment plan, and in particular that there should be a limit on the dialysis Sudiksha was receiving for her kidney failure. Dr William Tunnicliffe, the consultant in critical care and respiratory medicine at the Trust, explained in his first statement that the dialysis was “unpleasant, distressing and increasingly impossible to maintain given her reduced blood pressure which gave rise to a risk of cardiac arrest during the dialysis process”. By this time there was no longer any prospect of the kidney transplant which had been hoped for prior to Sudiksha's admission to hospital.

On 12 April 2023, the Trust made an application seeking permission to perform a capacity assessment on Sudiksha which was opposed by her parents. The following day the judge made an interim declaration that there was “reason to believe that Sudiksha lacks capacity to conduct these proceedings”. The Official Solicitor was appointed to represent Sudiksha.

On 18 April 2023, Dr Bagchi, a consultant psychiatrist, filed a report expressing his view that Sudiksha had full capacity. On 20 April 2023, Francis J granted permission for a second psychiatrist, Dr Mynors-Wallis, to consider the issue of capacity. Sudiksha refused to speak to Dr Mynors-Wallis and so he filed his first report shortly afterwards on 26 April 2023. Relying on research relating to the impact of lengthy stays in ICU and taking into account Sudiksha's age, he concluded that she lacked capacity.

Importantly, on 15 May 2023, Judd J approved a treatment plan which reflected many of Sudiksha's stated preferences. The plan was agreed by the parties, including the parents, without the need for a hearing and remained the operative plan until Sudiksha's death.

On 14 July and again four days later on 18 July 2023, Sudiksha went into respiratory arrest and had to receive lifesaving treatment. In the light of this further significant deterioration, the Trust made an emergency application on 20 July 2023 to approve a palliative care plan and for her life-sustaining treatment to be removed.

On 25 July 2023, in circumstances which have not been explored, David Foster, a solicitor of Moore Barlow LLP (“Moore Barlow”), visited Sudiksha and prepared a note of his meeting which was served on the parties. Mr Foster attended the subsequent directions hearing in front of Peel J with leading and junior counsel purporting to represent Sudiksha and seeking the discharge of the Official Solicitor as litigation friend for Sudiksha.

Peel J permitted Moore Barlow to participate fully despite not representing a party, as did the judge when the hearing of the issue of capacity came on as urgent vacation business on 7 August 2023. Peel J declined to discharge the Official Solicitor.

An order was made for Dr Mynors-Wallis to prepare a further report. This he did, this time having seen Sudiksha and her parents. He filed a second report on 5 August 2023 in which he explained that, now having had the opportunity to assess Sudiksha, he had revised his opinion and was now of the view that she had capacity to make decisions in relation to her medical treatment.

At the hearing to determine the issue of capacity on 7 August 2023, Dr Bagchi and Dr Mynors-Wallis, the Official Solicitor, and Moore Barlow all expressed their opinion that Sudiksha had capacity. The Trust alone maintained that she did not; their case was that she was delusional and therefore unable to make a decision as to her medical treatment.

Sudiksha's desire to receive experimental Nucleoside Therapy

By early October 2022, Professor Robert McFarland, an independent consultant paediatric neurologist, considered Sudiksha to be in the terminal stages of her illness. Professor McFarland is a world leading expert on RRM2B specialising in the pathogenicity in mitochondrial disease and its management. On 5 October 2022, the family had a meeting with Professor McFarland at which he explained that all possible...