PC, Re

Factual and Procedural Background

This is a rolled-up hearing concerning an application for permission to appeal against an order dated 23 May 2024 made by Mr Justice Cusworth in the Court of Protection. The central issue involves declarations under sections 15 and 16 of the Mental Capacity Act 2005 regarding whether it is in the best interests of PC to continue receiving clinically assisted nutrition and hydration (CANH) and whether withdrawal of such treatment is lawful, alongside the provision of palliative care.

PC, born in 1989 and residing in the UK since 1993, suffered a severe hypoxic brain injury in July 2020 resulting in a Prolonged Disorder of Consciousness (PDOC), specifically at the low end of the spectrum known as Minimally Conscious State minus (MCS-). PC has shown minimal awareness and no ability to communicate, with medical consensus confirming the permanence of the condition and a potential life expectancy of 10 years.

PC has been cared for at the Royal Hospital for Neuro-Disability (RHN) and subsequently at a specialist nursing home under its auspices. In June 2023, a best interests meeting led to a consensus that withdrawal of CANH was appropriate. A second external opinion was obtained from Professor Wade, an expert involved in drafting the relevant clinical guidance, who concluded withdrawal was in PC’s best interests.

Subsequently, a division arose within PC’s family regarding the withdrawal of CANH. The Integrated Care Board applied to the Court of Protection for declarations that PC lacks capacity to make decisions regarding her treatment and that withdrawal of life-sustaining treatment was in her best interests. The Official Solicitor was appointed as litigation friend for PC and sought additional expert evidence, which was provided by Professor Wade in updated reports.

The hearing was adjourned initially to allow PC’s mother, the proposed Appellant, to be joined as a party and to obtain legal representation. An application to adjourn further to permit additional neurological investigations was refused by the judge, a decision now subject to this application for permission to appeal.

Legal Issues Presented

1. Whether the judge erred in refusing to adjourn the hearing to allow further neurological assessments of PC’s level of awareness and experience of pain.
2. Whether the Court improperly conducted its own assessment of PC’s experience of pleasure contrary to established authority.
3. Whether the Court failed to properly consider the relevance of "covert consciousness" in assessing persons in persistent disorders of consciousness.
4. Whether it was erroneous and contrary to authority to decide to cease life-sustaining treatment for PC given the low burden of care and absence of expressed wishes against such care, thereby failing to respect the sanctity of life and PC’s right to life.

Arguments of the Parties

Appellant's Arguments

• The judge’s refusal to adjourn was unfair because the second opinion doctor (Professor Wade) fundamentally reversed his view on PC’s experience of pain during evidence, warranting further neurological investigation.
• There had been inadequate assessment of PC’s level of awareness, and both the Royal Hospital for Neuro-Disability and Professor Wade breached the Prolonged Disorders of Consciousness (PDOC) Guidance.
• The judge improperly conducted his own assessment of PC’s experience of pleasure, which is contrary to established legal authority.
• The Court failed to address the issue of covert consciousness and its relevance to PC’s diagnosis and best interests.
• It was wrong to discontinue treatment given the low burden of care and lack of expressed wishes from PC, thus failing to properly respect the sanctity of life.

Respondents' Arguments

• The Integrated Care Board and Official Solicitor opposed the application for permission to appeal, asserting that the assessments and evidence complied with PDOC Guidance and that further assessments would not alter the outcome.
• Professor Wade’s evolving view on pain did not affect his opinion on diagnosis or level of awareness, which remained consistent and supported by clinical evidence.
• The judge was entitled to rely on the extensive assessments and evidence before him, which showed no prospect of recovery or improvement in PC’s condition.
• The Court properly considered all relevant legal principles, including the sanctity of life, and made a decision consistent with established authority such as Aintree Hospital NHS Trust v James.

Table of Precedents Cited

Court's Reasoning and Analysis

The court conducted a detailed review of the extensive medical and expert evidence regarding PC’s diagnosis, level of awareness, and pain behaviours. It found that PC was appropriately diagnosed with PDOC at the low end of the awareness spectrum (MCS-) following thorough multidisciplinary assessments conducted over several years in accordance with the PDOC Guidance. The court accepted that PC lacks capacity and that the Official Solicitor was properly appointed.

The judge considered the evolving evidence from Professor Wade regarding PC’s experience of pain. While Professor Wade’s view shifted towards acknowledging the possibility that PC might experience some pain, this did not alter his or the clinicians’ consistent diagnosis of PC’s level of awareness or the irreversibility of her condition. The court found that further neurological assessments would not resolve the central question of pain experience, nor would they likely reveal a higher level of awareness.

The court rejected the Appellant’s argument that the PDOC Guidance had been breached, holding that the annual reviews and clinical assessments were adequate and consistent with best practice. It also declined to consider covert consciousness in the absence of evidence such as fMRI scans, which were not suggested or presented.

In relation to the refusal to adjourn, the court emphasized procedural fairness and the Appellant’s failure to comply with court rules requiring identification of expert evidence and issues to be addressed. The judge’s decision was deemed a proper exercise of case management discretion.

The court further analyzed the best interests test under the Mental Capacity Act 2005, balancing the sanctity of life against the burdens of PC’s condition, including the absence of any evidence of pleasure or enjoyment and the presence of distress and pain behaviours. The judge concluded that continuing CANH offered no benefit and that withdrawal was lawful and appropriate.

Holding and Implications

The court REFUSED PERMISSION TO APPEAL on all four grounds presented by the Appellant.

The judge’s order that withdrawal of clinically assisted nutrition and hydration is lawful and in PC’s best interests, and that PC should receive palliative care in accordance with the Palliative Care Plan, stands.

The decision confirms that in cases of permanent PDOC with no prospect of improvement, extensive multidisciplinary assessment consistent with clinical guidance suffices to inform best interests decisions. It underscores the court’s discretion in managing procedural applications such as adjournments and affirms the application of established legal principles regarding the sanctity of life and best interests under the Mental Capacity Act 2005. No new precedent was established; the ruling applies the settled law to the particular facts of this case.