There is no new law in this tragic case – but what does stand out is the judicial approach that puts the person’s autonomy at the heart of the decision, even where the exercise of that autonomy would, almost certainly, lead to the person’s death.
It must be a very rare case where an adult who at times does not have capacity to accept or refuse life-saving treatment, and who has expressed a will to live, is allowed to pursue a course that will lead to their death, but that was the outcome here.
Ms D’s story is a tragic one. At only 26 years old, she already had a long history of mental health difficulties, and had spent significant periods of her life in psychiatric units since the age of 15. The impact of her adverse earlier experiences upon her mental health had been profound and long lasting. She had been diagnosed with Emotionally Unstable Personality Disorder and Post Traumatic Stress Disorder (‘PTSD’), and at some points exhibited psychosis. Her complex diagnosis was accompanied by a long history of extremely serious life threatening self-harm; she inflicted significant injuries to her neck, requiring numerous admissions to an Intensive Care Unit. She had undergone a tracheal reconstruction in February 2022 but subsequently cut her own throat again in June 2022, requiring emergency surgery and leaving her with a tracheostomy in situ.
When in hospital, she would interfere with her tracheostomy tube if her sedation was either withdrawn or reduced. She could only be prevented from interfering with the wound by using chemical or physical restraint. Eventually, with the support of the psychiatric team, sedation was lifted and the tracheostomy tube was removed in early July 2022 so that she could be discharged to a supported housing placement for people with mental health difficulties. Sadly, this community placement did not last long. By the end of the same month Ms D was back in hospital, with such a severe self-inflicted further neck injury that she now faced life with a permanent tracheostomy and was unlikely to be able to talk again.
Attempts to wean Ms D off sedation began again, but she kept trying to remove the tracheostomy tube, leading to a risk of serious harm or death by asphyxiation. Managing her condition through long term sedation and ventilation was not practicable. Ms D was considered to be highly resistant to any psychiatric treatment, including psychotropic medication.
When calm, Ms D expressed a wish not to die, and asked the doctors to stop her if she did something that could end her life. Yet despite such statements, Ms D repeatedly took those steps. Even midway through the Court of Protection hearings, on 6 and 8 August 2022, she managed to grab and pull out her tracheostomy tube; she was only prevented from removing the tube completely by a combination of heavy sedation and arm splints. Her parents, who were fully involved parties in the court case, described this as a repeated pattern over the years: Ms D would say that she wanted treatment, producing glimmers of hope, but then very quickly self-harm again.
There was a significant question about Ms D’s capacity: some clinical staff thought she had capacity to make decisions about her treatment, but an independent expert concluded that there was sufficient evidence that at times, Ms D lost capacity to weigh decisions about her ‘tracheal care’ as a consequence of her PTSD. The judge ultimately agreed with the expert, but the dilemma faced by everyone in this case was that, whatever her capacity, it was not possible to reduce the sedatives administered to Ms D without her attempting to remove her tracheostomy. The reality was that the only way to provide life-sustaining treatment to Ms D during periods when she was agitated was through physical and chemical restraint
In the course of the case, a multi-disciplinary meeting was convened which was attended by Ms D and her parents. It was explained to Ms D that there were two options available to her: (i) to keep the tracheostomy tube and engage with the ICU staff to wean her off the ventilator, reduce and then stop sedation, and undertake training to manage her tracheostomy in the longer term; or (ii) for the tracheostomy tube to be removed, in which case she would be offered care to remove it safely, following which a palliative care plan will be put into effect. Ms D again stated that she wanted to live and wanted the clinical team to prevent her from dying; however, she also said that there were times when she wanted to live and times she wanted to die. Indeed, before the matter came to court it seemed Ms D had wanted to complete an Advance Directive declining resuscitation and other medical treatment, but this had not been facilitated, because she was told she needed an advocate to complete one.
The relevance of autonomy for Ms D’s future
The psychiatric evidence focused on Ms D’s psychological need for autonomy. In the view of her consultant psychiatrist, the only realistic hope for a future was for Ms D to believe that she was in control of her own life. If she genuinely believed that nobody would intervene to prevent her from harming herself, she might choose not to remove the tracheostomy tube. The psychiatrist accepted that this hope might not be fulfilled, and the plan might lead to Ms D’s death
Ms D’s loving and committed parents felt that the point had been reached at which their daughter should be allowed to make her own choice, and her actions should be respected. The Official Solicitor also accepted that the Court should seek to maximise Ms D’s autonomy where there was little prospect of any long term recovery from her mental ill-health.
Lieven J was mindful of a number of authorities that emphasised the right to personal autonomy including Savage v South Essex Partnership NHS Foundation Trust  UKHL 74 and Nottinghamshire Healthcare NSH Trust v RC  EWCOP 1317 where at  Mostyn J stated:
“The Hippocratic duty to seek to save life, or the benign but paternalistic view that it is in someone’s best interests to remain alive must all surely be subservient to the right to sovereignty over your own body. Beyond this, considerations such as whether the treatment would be futile will no doubt be relevant; for example, if the repair of a laceration would inevitably be followed by a new one or if the patient was suffering from another unrelated terminal disease.”
The judge noted that where, as here, Article 2 ECHR was engaged the need for judicial scrutiny of any proposed treatment plan which gave effect to personal autonomy over the preservation of life was particularly important. She reminded herself of the often cited passage from Aintree University Hospitals NHS Foundation Trust v James and others  UKSC 67, at , where Baroness Hale observed that when considering the best interests of the particular patient decision-makers must look at the person’s welfare in the widest sense, and particularly consider what the outcome of treatment for the patient is likely to be, and the patient’s attitude to the treatment.
The judge found that for most of the time Ms D did have capacity to make decisions about her treatment, but when she became distressed, she would lose capacity and try to remove the tracheostomy tube. Even when she had capacity, Ms D was ambivalent about the future, which she plainly understood was bleak; she was now left possibly unable to speak. Her wishes and feelings fluctuated rapidly, moving from a clearly stated wish to live to trying again to remove her breathing tube, within a day.
Her Ladyship noted that it would be a very rare case where an adult who at times does not have capacity and who has expressed a will to live is allowed to die. However, here the evidence of those who knew her best was that the most important thing for Ms D was a sense of autonomy, that she was in charge of her own life, and of her decisions. Continued physical restraint, and replacing the tube if she removed it, undermined her autonomy and further damaged her mental health.
Added to this was the reality that continued treatment was wholly impracticable. Ms D would need a period of 3-6 months of consistent engagement with medical therapy before it was possible to remove the tube. She could not be kept sedated for that period. However, if she was not sedated and/or physically restrained there was an extreme likelihood that she would again try to remove the tube as she had done many times before.
Restraining her and replacing the tube offered no long term solution to her physical or mental issues; there was very little if any prospect of any long term improvement to her mental health. In the judge’s view, restraining her and replacing the tube appeared futile in anything other than the very short term.
The judge therefore was prepared to endorse the treatment plan proposed by the Trust as being in Ms D’s best interests: her life would be placed in her own hands and she would not be restrained or have the tube replaced if she removed it. Ms D would be fully aware of the consequences and free to make her own choice, even though this might lead to her death.
The Vice President has commented in a different context on the ‘fundamental principle that the promotion of autonomous decision making is itself a facet of protection’. In the sphere of medical treatment cases, this approach has most often been seen in the case of individuals with severe and prolonged anorexia, where clinicians have likewise been driven to the conclusion that only the complete restoration of autonomy offers the patient any hope for a future: e.g. A NHS Foundation Trust v Ms X  EWCOP 35 and Cheshire & Wirral Partnership NHS Foundation Trust v Z  EWCOP 56. Here we see another case favouring an individual’s autonomy over the more conventional emphasis on the sanctity of life above everything else.
Claire Watson KC of Serjeants’ Inn was instructed by Kennedys Law and Browne Jacobson for the Applicant NHS Trusts, Bridget Dolan KC of Serjeants’ Inn was instructed by the Official Solicitor as litigation friend to Ms D