Critical lessons in Prolonged Disorder of Consciousness and best interests decision-making

The Court of Protection has delivered a significant judgment concerning JP, a man in Prolonged Disorder of Consciousness (PDOC) who was in receipt of clinically assisted nutrition and hydration (CANH). 

This case demonstrates the critical importance of patient-centred care, timely decision-making and bringing legal action. It serves as a reminder to healthcare commissioners and providers that the court will not shy away from criticising parties who do not adhere to timely best interests decision making.

Background 

The case concerned JP, a patient who has been in PDOC since suffering a severe hypoxic brain injury following a cardiac arrest in 2016. JP had been in a permanent vegetative state (PVS) for nine years, receiving care at the Royal Hospital for Neuro-disability.

The first decision of The Honourable Mr Justice Hayden

In the first judgment, handed down on 24 January 2025, Mr Justice Hayden focused on JP's best interests. The court considered the views of the family, which were divided between those with strong religious beliefs and those with a secular approach. Ultimately Mr Justice Hayden concluded that continuing clinically assisted nutrition and hydration was not in JP's best interests, given the futility of the treatment and JP's previously expressed wishes:

“Having surveyed the full panoply of both the lay and medical evidence, I have come to the clear conclusion that it would be contrary to JP’s best interests to be provided with hydration and nutrition at this stage in his life. Such treatment would be both futile and burdensome, and, I am satisfied, particularly on the evidence of his children and late partner, not what he would have wanted.”

Mr Justice Hayden also noted that a second separate judgment would be made at a later date to discuss the significant delay in making a best interests decision and bringing legal action.

Court’s criticism of delay

The second judgment, delivered on 26 February 2025, addressed the significant delay in bringing the case to court. Mr Justice Hayden criticised the Royal Hospital for Neuro-disability for not acting sooner in light of the clear evidence that JP would not have wanted to remain in his current condition. 

It comes following criticism in other cases, such as NHS North Central London Integrated Care Board v Royal Hospital for Neuro-Disability & Anor [2024] EWCOP 66 (T3) and North West London Clinical Commissioning Group v GU [2021] ECOP 59, where delays in best interests decisions were also highlighted.

In his judgment, Mr Justice Hayden noted:

“Notwithstanding the high standard of nursing care JP has received, I am driven to conclude that the failure properly to address his best interests, in a timely way, has compromised his dignity. By this, I mean, that JP has an inviolable right to be valued, respected, and treated ethically solely because he is a human being. The inherent dignity of a human being imposes an obligation on those treating him, actively to promote his dignity. I very much regret to say that the RHN has failed to meet this most fundamental of obligations. I record that they recognise this and have made a clear and unambiguous apology, expressed to JP and his family. The importance of an apology must always be recognised, and I do not underestimate the sincerity of it. Nevertheless, in circumstances such as these, it can never be sufficient or, ultimately, satisfactory.”

Key takeaways for health care commissioners and providers 

1. Vigilance and proactivity: ICBs must be vigilant and proactive in the best interests review process. They should not remain neutral but actively engage in evaluating the quality of evidence and making timely decisions.
2. Patient-centred decision-making: Decisions should be entirely patient-focused, prioritising the patient's best interests, previously expressed wishes, and feelings. ICBs must ensure that the patient's dignity and autonomy are respected.
3. Family involvement: While family members' observations are important to illuminate the patient's past and present wishes, ICBs must not let family disagreements unnecessarily delay the ultimate best interests decision.
4. Timely best interests decisions: ICBs must act promptly when there is clear evidence of a patient's wishes, especially in cases involving PDOC. Delays can lead to prolonged suffering and legal repercussions.
5. Documentation and communication: Proper documentation of the patient's condition and timely communication with interested parties are essential. ICBs should ensure that all actions and decisions are well-documented, especially when there is disagreement, to avoid unnecessary delays and criticisms.
6. Timely legal action: If there is a disagreement preventing a timely best interests decision, then bringing the matter to the attention of the court in a timely manner is essential. This is vital to limit the prolonged suffering of the patient and to minimise criticism by the court.
7. Justifying delays: In cases where progress has been regrettably delayed, ICBs must provide a clear and comprehensive explanation to the court to mitigate criticism. Apologies should include “plain language, an unambiguous recognition of the extent of the delay, and acknowledgment of the avoidable pain caused to the family by it”.

Although the court did not issue specific punitive orders against the parties, this judgment emphasises the need for timely legal action in similar cases to prevent prolonged suffering and ensure that patients' best interests are prioritised. Nationally, there are vast number of patients in the community in PDOC or PVS, with between 4,000 and 16,000 patients in specialised nursing homes in England and Wales alone. When dealing with cases such as these, it is vitally important to address the needs of the individual patient cohort and ensure that their care aligns with their best interests and the legal standards. By adhering to these key takeaways, ICBs and other health bodies can avoid criticism from the court while also improving patient care.

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