NHS South East London ICB v JP – what does it mean for healthcare organisations?  

Introduction 

This important case in front of Mr Justice Hayden sets out the Court’s expectations in relation to reviews of patients with persistent disorders of consciousness (PDOC) and the provision/withdrawal of clinically assisted nutrition and hydration clinically assisted nutrition and hydration (CANH). The judgment contains clear guidance on the respective roles of: 

• The clinicians and services providing CANH; 
• ICBs, as the commissioners of the relevant packages of care; and  
• family members in the analysis of best interests. 

Background  

JP was a 64 year old man who had been in a PDOC for 9 years. There was substantial evidence from soon after the hypoxia that caused JP’s condition, that he would be unlikely to recover and that he would have hated to have been in the situation in which he found himself in. In the 9 years in which JP remained in PDOC, the Royal Hospital for Neuro-disability (RHN), in its capacity as the treating hospital, had sought to contact all of JP’s family to obtain their views and discuss the way forward.  In this period JP’s wife had passed away, the Covid-19 pandemic hit and there was disagreement within JP’s large family as to his best interests, with some of the family believing that treatment should not be withdrawn on religious grounds. It was acknowledged by all parties involved that it had taken far too long to bring this matter to court. 

Mr Justice Hayden took the unusual decision of producing two judgments.  

• The first dealt specifically with JP’s best interests, finding unequivocally that it was in JP’s best interests for CANH to be withdrawn.  
• The second dealt with the roles of the care providers, the commissioners of services and the family.  

What do you need to know?  

The key points made by the judge are as follows: 

• Delay: The judge re-emphasised numerous recent decisions, stating that delays are inexcusable, and steps must be taken by the clinicians and commissioners involved to ensure that proceedings are issued promptly, when a dispute about best interests arises. 
• Service providers: the commissioned service has a fundamental obligation to protect JP’s dignity, which includes an obligation to obtain the Court’s determination on best interests. The judge acknowledged that the RHN has now devised a robust system for dealing with these cases. This system has involved creating a CANH policy, appointing a dedicated PDOC lead, and identifying and training staff to undertake the best interest’s consultation process with family members. Mr Justice Hayden also acknowledged that, whilst the RHN has been the respondent in a number of recent cases, there are likely to be a large number of cases which should be brought to court by other organisations and which have not been. Estimates suggest in nursing homes in England and Wales, there are: 
  • between 4,000 and 16,000 patients in a vegetative state,  
  • three times as many in a minimally conscious state, and  
  • an unknown number of people with PDOC in other settings. 

• ICBs: the judge, referring to numerous recent judgements including AB, emphasised that ICBs cannot be passive bystanders. The judge considered that the ICB may have leaned too heavily on (and deferred to) the RHN’s status as an internationally recognised centre for neuro-rehabilitation. However, he urged the ICB to be a “proactive participant in promoting the patient’s best interests” and to prioritise the current review of its processes. ICBs have an important role in: 
  • ensuring the care package meets the service user's assessed needs on an annual basis, including whether life-sustaining treatment remains appropriate 
  • enabling best interests decisions to be made without delay 

• Role of JP’s family: The judge was clear that the role of JP’s loved ones is limited to shedding light on what JP’s own wishes and feelings would have been. The judge was concerned about the time spent seeking to obtain the views of the family and the weight placed on their views. The judge was clear that decision-making should not be delayed “in consequence of a heightened sensitivity to the religious views of some of his family” as doing so “would be to neglect him and to lose focus on the central question of what is in JP’s best interests”.  

Action points for healthcare organisations 

Clinicians and commissioners must consider P’s best interests at regular review intervals expressly including consideration of whether P would have been likely to continue with CANH or whether P would have preferred it to be discontinued in circumstances where treatment was futile. They must bring disputes about best interests to court quickly.  

Treating teams have the relevant expertise and a crucial and continuing key role to play in patients’ best interests. However, it is unacceptable for ICBs to be “passive bystanders” deferring to the treating clinicians. ICBs must be actively involved in ensuring that P’s best interests are reviewed regularly and should have policies and processes in place to ensure that this happens.  

The primary purpose of obtaining the views of P’s family and loved ones is to shed further light on P’s own wishes and feelings.  Proceedings should not be delayed in deference to the family’s wishes, and it is not for the healthcare providers or the commissioners to seek to mediate any disputes between family members.  

How Capsticks can help 

If you have any queries in relation to the issues raised, please contact Lizzie Bond, Francis Lyons or any of our expert team members.  We would be pleased to provide support on a wide-range of issues, including: 

• Advice and support on best interests decision-making and disputes with friends and family;
• training on the application of the Mental Capacity Act to care, treatment and the commissioning of services; and  
• review and draft support for your current policies and procedures.