Prolonged disorders of consciousness, the courts and clinicians

The National Clinical Guidelines for Prolonged Disorders of Consciousness (PDOC) were published by the Royal College of Physicians (RCP) on 5 March 2020. Endorsed or supported by more than 15 national stakeholder organisations, the guidelines update the previous guidance published in 2013, particularly in relation to a) recent developments in assessment and management and b) recent changes in the law governing procedures for the continuation or withdrawal of clinically assisted nutrition and hydration (CANH). They lay out for clinicians, service providers and commissioners what constitutes best practice within the existing legal framework in England and Wales, to enable them to fulfil their various responsibilities to the patient and their family.

Background

Developments in assessment and management

Recent improvements in the emergency and acute healthcare services deliver better outcomes for many patients following severe illness or injury. But as we get ever better at saving lives, more patients are surviving with catastrophic brain injury, some of whom will sadly never regain consciousness but remain in a vegetative or minimally conscious state (VS/MCS) for the rest of their lives. As yet there is no accurate information on incidence or prevalence, but it has been estimated there may be anywhere between 4,000 and 16,000 patients with long-standing VS in the community and perhaps three times that number in MCS.[1]

Developments in case-law

The guidelines address the legal and ethical boundaries in this complex and developed area. Since the previous guidance was published in 2013, the courts have been on a considerable journey refining their understanding of the application of the Mental Capacity Act 2005 (MCA 2005) and Human Rights law, both as a matter of substance (what ‘best interests’ means) and as a matter of procedure (how best interests decisions are to be taken).

Key milestones have included the decision of the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, the decision of Charles J in Briggs v Briggs [2016] EWCOP 53 and the decision of the Supreme Court in An NHS Trust & Ors v Y [2018] UKSC 46. In consequence of these decisions, it is now clear in relation to those in respect of whom decisions are being made under the MCA 2005 that:

• It is the giving, not the withdrawing of treatment that needs to be justified;
• While decision-making should always start from the strong presumption that it is in the patient’s best interests to prolong life, this presumption can be rebutted by the principle of self-determination, if there is evidence that the patient him/herself would not wish to continue life-sustaining treatment (including CANH) in the circumstances that have arisen;
• The critical question to consider is not whether the patient will regain consciousness, but whether they will recover a quality of life that they themselves would value;
• It is no longer necessary to make an application to the Court of Protection to withdraw CANH from a patient in PDOC, provided that a) the provisions of the MCA 2005 are followed, b) relevant guidance is observed (including clinical/ professional guidance), and c) there is agreement that continued treatment is not in the best interests of the patient.

Previous RCP guidance published jointly with the British Medical Association (BMA) in December 2018[2] provides guidance on CANH in the wider group of patients who lack capacity. The updated RCP PDOC guidelines focus specifically on patients in VS/MCS following sudden-onset brain injury, and cover a wider range of life sustaining treatments. The two sets of guidelines are designed to complement each other and both set out recommendations for documentation and scrutiny proportionate to the nature of the decisions in question.

When to go to court

If the above processes are followed correctly the large majority of decisions to start, stop, continue or withdraw CANH and other life-sustaining treatments can be made by the treating team in conjunction with the family according to the principles in the MCA without any involvement of the court. Lady Black, for the Supreme Court in An NHS Trust v Y, having confirmed that there is no general obligation to go to court, also stated:

‘If, at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made’.

Guidance on Serious Medical Treatment cases subsequently issued in January 2020 by the Vice-President of the Court of Protection, Hayden J,[3] expanded the categories of case in which an application should be made to those concerning life-sustaining treatment where there is a “a potential conflict of interest on the part of those involved in the decision-making process.”

The PDOC guidance represents an important working out in practical terms of the consequences of these two judicial statements. It emphasises that Lady Black was careful in her words, and that the Supreme Court was not requiring every difficult decision to come to court. Clinicians face difficult decisions daily, many of which have potentially serious consequences. The question is whether, at the end of a process designed to test whether consensus is properly achieved, there remains disagreement or the decision is finely balanced.

Legal advisors should also note that the process of assessing best interests should be conducted in an efficient and timely manner as otherwise clinicians risk subjecting patients to treatment that is not in their best interests simply because of unnecessary delays in evidence gathering and decision-making.

The question of conflict of interest raises rather different issues, which the guidance addresses in detail, in particular by recognising that the real question is whether the almost inevitable conflicts of interests that will arise for families, clinicians and commissioning bodies can be appropriately recognised and managed.

Going to court

The RCP guidance – as with the Vice-President’s guidance – emphasises that, if a court application is required, the NHS commissioning body with overall responsibility for the patient should bring an application to the court and to fund that application – this should not be left to the family. The two sets of guidance, read together, provide a detailed route map for recognising when an application should be made, preparing an application and bringing an application.

 

[1] Bunn S, Fritz Z. Vegetative and Minimally Conscious States. POST note 489. London: Parliament 2015.

[2] Clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent: Guidance for decision-making in England and Wales. London: British Medical Association and the Royal College of Physicians 2018

[3] [2020] EWCOP 2.

 

Alex Ruck Keene, barrister, 39 Essex Chambers, and Yogi Amin, partner and national head of public law and human rights department, Irwin Mitchell

The authors were the legal advisors to the Royal College of Physicians working party/guidelines group that produced the 2020 guidelines