University Hospitals Birmingham NHS Foundation Trust (“The Trust”) v ST (by her litigation friend, the Official Solicitor)
| Jurisdiction | England & Wales |
| Judge | Mrs Justice Roberts |
| Judgment Date | 25 August 2023 |
| Neutral Citation | [2023] EWCOP 40 |
| Court | Court of Protection |
| Docket Number | Case No: 1405715T |
[2023] EWCOP 40
THE HONOURABLE Mrs Justice Roberts
Case No: 1405715T
IN THE COURT OF PROTECTION
In the matter of the Mental Capacity Act 2005
And in the matter of ST
Royal Courts of Justice
Strand, London, WC2A 2LL
Vikram Sachdeva KC (instructed by Bevan Brittan) for the Applicant
Michael Horne KC (instructed by the Official Solicitor) for the First Respondent
The second and third respondents appeared in person with ST's brother, VC
Damian Garrido KC and Bruno Quintavalle appeared at the invitation of the court having been instructed by Moore Barlow LLP on behalf of ST
Hearing date: 7 August 2023
Approved Judgment
I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic.
THE HONOURABLE Mrs Justice Roberts
The judge has given leave for this version of the judgment to be published.
ST is 19 years old. Despite a school career in mainstream education where she was studying for her A levels, she has spent the past year as a patient in an intensive care unit run by the Hospital Trust which brings this application. She has a rare mitochondrial disorder which is a progressively degenerative disease. According to the expert 1 evidence which is before the court, there is no cure which might enable ST to resume her life outside the clinical setting of the intensive care unit. She is mechanically ventilated through a tracheostomy. She is fed through a percutaneous endoscopic gastrostomy tube and is currently undergoing regular haemodialysis. Her disease has resulted in a number of related health problems including impaired sight and hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs.
The collective view of her treating hospital clinicians is that ST is now in, or fast approaching, the final stage of her life. In February this year, as her condition appeared to worsen, the Trust issued these proceedings to determine the validity of a lasting power of attorney which ST had apparently signed some three months earlier and, specifically, to seek declarations in relation to her capacity and her future medical treatment. The matter comes before me as a result of directions given by Mr Justice Peel on 26 July 2023. The issues for determination at this hearing are ST's capacity (i) to litigate and (ii) to make her own decisions in relation to future medical treatment. The Trust's intention is to move to a treatment plan of palliative care. That path would involve a much less invasive regime for ST. Dialysis would end and there would be no further attempts to resuscitate her in the event of a further major respiratory arrest such as occurred in March and July this year. Her treating clinicians are keenly aware of the need to involve ST as far as possible in how she would wish to be cared for and what steps might be taken to ensure that her last days or weeks of life were as comfortable and pain-free as possible. In preserving respect for her personal autonomy to make these choices, they have met with a fundamental obstacle which, on the case advanced by the Trust, is her apparent refusal or inability to accept that her disease will result in her early, if not imminent, death. It is that inability, or “delusion”, which the Trust relies on as rendering her incapacitous to make decisions for herself.
The Trust's case is that ST is “actively dying”. It became clear during the course of the oral evidence I heard from Dr A, the consultant leading her care on the ITU, that this assessment does not mean that her death is necessarily imminent. She may have weeks or even months to live. The exact prognosis is uncertain. What is clear from clinical observation is that she has progressive respiratory failure with episodes of acute exacerbation resulting in breathlessness, distress and agitation. The current care
plan is based upon the withdrawal of haemodialysis although ventilation will continueDespite all the difficulties which currently confront her, ST is able to communicate reasonably well with her doctors with assistance from her mother and, on occasion, speech therapists. Over the course of the last week she has engaged in two separate capacity assessments. I heard evidence from two consultant psychiatrists whose conclusions in relation to her capacity in both domains are set out in full written reports. In terms of communication, as in so much else, ST relies on the love and unquestioning devotion of her immediate family. Her mother has hardly left her bedside since her daughter's admission to hospital on 1 August 2022 after she suffered a respiratory arrest having tested positive for Covid. She joined the hearing today from the hospital. ST's brother and father were present in court. The family's support has been quite remarkable and, as all agree, has sustained ST through all the vicissitudes of the last few months. She has been described by those who know and love her as “a fighter”. That is how she sees herself. At the heart of the issues in this case is what ST and her family perceive to be a ray of hope in the form of an experimental nucleoside treatment outside the United Kingdom which might offer her hope of an improved quality of life, albeit a life which is likely to end prematurely in terms of a normal life expectancy. She has told her doctors that she wants to do everything she can to extend her life. She said to Dr C, one of the psychiatrists who visited her last week, “This is my wish. I want to die trying to live. We have to try everything”. Whilst she recognises that she may not benefit from further treatment, she is resistant to any attempt to move to a regime of palliative care because she wants to stay alive long enough to be able to travel to Canada or North America where there is at least the prospect that she may be accepted as part of a clinical trial.
No doubt through her unquestioning devotion to her daughter, her mother has expressed complete confidence that the treatment will work. Her brother is less confident but nevertheless supports his sister's wish to be given the chance of undergoing nucleoside therapy. Whilst ST herself told Dr C that she thought her chances of some recovery were no more than 50%, he told me that he had not interpreted that as a balanced or considered judgement on her part in relation to the likelihood of success but rather more an acceptance and acknowledgment that the treatment may not work. He reported that the whole family, including ST, see this as “the light in the tunnel”. It is ST's clearly- expressed wish to stay alive long enough to reach that light and she opposes any attempt by her doctors to withdraw the life-supporting treatment which she is currently receiving prior to further enquiries being made as to her eligibility to join one of the trials. The family accepts that this potential treatment will be expensive. On ST's behalf her parents have issued an application whereby they seek to have the existing reporting restrictions lifted in order that they can publicise their daughter's situation in order to raise money for her treatment. That is not an issue which falls for determination today but it informs the preparations which they have been making to secure a place for ST on one of the medical trials about which there is some limited evidence in the material before the court.
ST is well aware that she has been offered a very poor prognosis by her doctors. She acknowledges that they have told her that she will die but she does not believe them. She points to her recovery from previous life-threatening episodes whilst she has been a patient at the intensive care unit. She believes she has the resilience and the strength to stay alive for long enough to undergo treatment abroad and she wishes the court to acknowledge her right to make that decision for herself.
As matters stood when the case began, the two most recent capacity reports from Dr C and Dr D (both consultant psychiatrists who assessed ST in the days leading up to the hearing) suggested that she had capacity to make these choices for herself. The Trust, relying on the evidence of her treating clinicians, takes a different view. The Official Solicitor reserved her position until the conclusion of the evidence. She now offers qualified support to ST's position and accepts that, subject to any contrary view taken by the court, ST has capacity to conduct these proceedings through her own legal representatives and to make decisions in relation to her future medical treatment.
At the last directions hearing before Peel J on 26 July 2023, the court read a witness statement from Mr David Foster, a partner in a firm of solicitors which, in the light of the ongoing capacity assessments, had been requested to represent ST in this litigation. Although the circumstances of that firm's instruction are not clear from the statement, Mr Foster stated that, having met with ST the previous day, when he found to be “alert and conscious”, he had agreed to represent her. He had obviously formed his own view that she was capable of giving him instructions. She had communicated to him that she understood that she had a mitochondrial disorder which was progressive and would likely lead to her death. She confirmed that she wished to continue treatment to give her “the best opportunity of life”. When he raised the issue of experimental treatment in Canada she had given Mr Foster a “thumbs up” to indicate that this was her wish.
Present in court at the last hearing on 26 July were leading and junior counsel instructed by Mr Foster on ST's behalf....
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