Family dispute about life-sustaining treatment: A directions hearing

By Jenny Kitzinger, 22nd December 2021

The hearing I attended on 21st December 2021 before Ms Justice Russell was yet another case which underlines the dangers of not planning ahead for possible future loss of capacity. 

This is what can happen to any of us, at any time, if we are suddenly brain injured, whether from a car crash, assault, cardiac arrest, or any of the other unexpected events which can result in serious insults to the brain. 

I attended this hearing because I was alerted to its broad focus. Once I was observing it, I realised I have some prior knowledge of this case from an earlier point in the patient’s trajectory. In this blog, however I draw solely on information gleaned from the hearing.

Background to the case

At the centre of this case (COP 13862920) is a man in his 40s (“MJ”) who, suffered a sudden subarachnoid haemorrhage (a type of stroke) in December 2020. 

Like the vast majority of the people, MJ has no Advance Decision (ss. 24-26 Mental Capacity Act [MCA] 2005) or advance statement (s. 4(6)(a) MCA), and has not appointed anyone with lasting power of attorney (ss. 9-14 MCA) for health and welfare. 

This is not a blog full of seasonal cheer – but it might suggest a novel Christmas present. 

After reading this blog, I hope readers will be reminded of why advance planning for a possible future when you might lack capacity to make your own treatment decisions can be a priceless gift to your family (and your clinical team). Relevant documentation is invaluable to those who might one day have to confront decisions about your care. (See the charity, Compassion in Dying, for how to make use of these advance planning instruments). 

During the year since MJ’s original injury, his clinical team have been faced with a series of difficult decision about the benefits and burdens of medical interventions for him as an individual. 

His family and fiancé have had to make painful assessments of what MJ’s own likely wishes would have been. 

At times, they have been in agreement that MJ would not have wanted any ongoing life-sustaining treatment, but that is not the case now. 

They have been catapulted into a hugely difficult conflict, with different views of the right way forward.

His current condition seems to be at the higher end of the Minimally Consciousness State (“MCS +”) – although it is possible he has emerged into consciousness.  I wasn’t entirely clear on this point from the directions hearing but no doubt the expert evidence about his diagnosis and prognosis will be presented in future hearings. Either way he has been left with severe neurological deficits. 

After a prolonged period of hospitalisation and specialist rehabilitation and assessment he now lives in a care home, dependent on 24/7 support and lacking capacity to make decisions about his own medical treatment. 

He is sustained by clinically assisted nutrition and hydration (CANH). 

Some of his family believe that CANH and other life-sustaining treatment should now cease,  on the ground that MJ himself would not want it. His fiancé disagrees.

Given the lack of an Advance Decision, all medical treatment (including CANH) need to be decided on the basis of his best interests. 

Given the lack of agreement on what should happen, the decision has been referred to the Court of Protection. 

The hearing 

The directions hearing lasted just 20 minutes. 

The applicant CCG was represented by Vikram Sachdeva of 39 Essex Chambers.

The protected party at the centre of the case, MJ was represented by Sophia Roper of Serjeant’s Inn (via the Official Solicitor). 

The NHS Trust that had provided rehabilitation and assessment for MJ prior to his being discharged into a care home was represented by Ania Rao.

During the hearing it was agreed that MJ’s fiancé and MJ’s nephew should be (separately) joined as parties. Neither was present at this hearing and both will be acting as Litigants in Person. 

Plans were also made to disclose information and inform relevant people and deadlines were agreed for lodging relevant (updated) medical evidence and witness statements. 

It was also agreed that, following receipt of such information, the applicant would organise a roundtable discussion between those involved to identify whether there was any scope for agreement or narrowing the issues.

A date for the next hearing was set and it was also agreed that updated position statements would be filed several days before that hearing. 

Costs were reserved, ‘apart from the usual costs order’. 

An unexpected change of circumstances

The routine business of a directions hearing was somewhat disrupted by the news that MJ had been admitted to hospital with pneumonia the previous day. 

He’s now receiving IV antibiotics.

I was left wondering how decisions about transferring MJ from his care home to hospital and the administration of IV antibiotics had been made given the views of some of MJ’s family about what MJ would feel about life-prolonging interventions. I wonder whether those charged with MJ’s care at present had carefully assessed MJ’s best interests taking into account those well-documented views and decided hospital admission was in his best interests nevertheless. I also wonder whether – as I have seen happen in some cases – he might have been transferred to hospital without (or even contrary to) careful best interests assessment and agreed ceilings of treatment. This is, of course, pure speculation: there was no evidence either way discussed at the hearing.

In any event, he was, as Sophia Roper (counsel for MJ), pointed out, ‘in a more perilous condition that we thought he might be”. 

This medical emergency may account for the absence from the hearing of MJ’s fiancé and his nephew. In any case, it is a stark reminder of how family members in CoP cases are often dealing not only with the demands of legal proceedings but also the crisis of caring for a loved one – whether at home, in residential care accommodation, or in hospital.

MJ’s admission to hospital had prompted MJ’s fiancé to suggest delaying the hearing into the question of CANH – something the court refused on the grounds that, as the judge made clear: “It is not in MJ’s best interests to let the matter lie without progressing it at all”. The judge also noted that she was mindful of the difficulty of scheduling these sort of cases and the possible disruption the current Covid surge might add.

Counsel for MJ highlighted the strain on MJ’s fiancé and his family and requested that a recital should be recorded “to provide reassurance” to them. This recital included stating that MJ will be administered IV antibiotics pending further clinical review on whether these should continue or if he should be for palliative care, and that the timetable in relation to the court process “can be extended if in MJ’s best interests to do so.” (This last statement highlights the CoP’s clear focus on the individual at the centre of the case, only taking into account the feelings of P’s family insofar as the individual himself or herself might have done so.)

The recital was agreed with the clarification (suggested by Vikram Sachdeva, counsel for the CCG) that it should specify that if the timetable were to be extended, that would be “by the court’ (making clear where authority for any change of timetable lay).

It was good to see the acknowledgement of the strain on MJ’s fiancé and family, and the importance of including them in  proceedings, alongside maintaining the court’s focus on MJ’s best interests and on proceeding in a timely manner. This is something that sometimes seems harder to deliver in day-to-day clinical settings. Outside the courts, I have sometimes seen concern for family members (the vocal, emotional presence in the room) apparently trump concern for a patient’s best interests. I have also sometimes seen discussion of best interests in relation to CANH in particular be put on hold – sometimes repeatedly – when patients go through life-threatening infections, and family or clinicians think (indeed sometimes even hope) that a proactive discussion of CANH might become redundant as ‘nature’ might takes its course.

In this court hearing I was left with the impression of a well prepared, careful and efficient hearing, underwritten by a wealth of existing clinical and best interest documentation – all setting the groundwork for the next hearing. 

I am also left with a huge sadness – both for what has happened to MJ, and for the dire consequences for his fiancé and family, who are now not only dealing with the grief and trauma of his injury but are also left in this terrible position as they try to do what they believe to be right by him.

The further directions hearing is planned for early 2022, and I will hope to observe it and write an update blog then. 

Meanwhile, the usual plea to anyone reading this – please consider appointing someone you trust to make decisions for you if you were unable to do so in future (the forms to do so are on the government webpage and don’t require a solicitor). Alternatively, or in addition, you can make an advance statement or a formal Advance Decision [Further information from Compassion in Dying]

I’ve had this documentation in place myself for many years – even though I am relatively young and healthy. I know how important such documentation is because my own family has had to confront the traumatic things that can happen when it is not in place, as we’ve described here: “M, Polly and the right to die” and “Doctors wouldn’t let my sister die”.

I would urge anyone who’s been considering sorting out paperwork for themselves to do this as soon as possible.  If it doesn’t feel right to do it over Christmas, there is always the opportunity to make it a New Year’s resolution!

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Thank you to Joanna Kosinska on Unsplash for the image.

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