A perspective from the ICU on best interests at the end of life

By Alex Warren, 31st March 2021

Editorial note: For an earlier blog about this same case, with a focus on the use of a video of P on social media to try to challenge the decision of the court, see Jenny Kitzinger’s post here. You may also be interested in Celia Kitzinger’s blog about the role of Dr Patrick Pullicino here.

A recent Court of Protection case concerned a middle-aged man, “RS”, who suffered an out-of-hospital cardiac arrest but survived, following CPR, with severe irreversible brain damage. The clinical team and RS’s wife of seventeen years believed that it was in his best interests for life-sustaining treatment to be withdrawn. They were opposed by RS’s other relatives, including his sister, mother, and niece (who had not spoken to him for eight years). The Court found in favour of RS’s wife and the NHS trust. After a number of appeals and other hearings^[1], treatment was withdrawn and RS died.

To the ICU clinician, the facts of this case are notable for their ordinariness. This is obviously an unimaginably sad situation for the person and for the family involved, but this sort of clinical situation evolves every day in intensive care units around the country. According to a recent National Confidential Enquiry into Perioperative Death (NCEPOD) report, ambulance staff attempt resuscitation in 30,000 out-of-hospital cardiac arrests per year; only 1 in 10 patients survive to leave hospital. Of those who die in hospital, three-quarters of these deaths follow a decision to withdraw life-sustaining treatment due to poor neurological prognosis. Such a situation — a patient ‘kept alive’ but with a likelihood of neurological and functional deficits — can arise out of many different illness and injury processes: the young motorcyclist who crashes and receives a traumatic brain injury; the mother-of-three who suffers a devastating subarachnoid haemorrhage from an aneurysm she never knew about; the grandfather whose open-heart surgery involves unforeseeable complications and who suffers brain damage despite the best efforts of the healthcare team.

The process of decision-making in such cases is relatively established. Extensive clinical tests are performed to determine the prognosis. In relation to out-of-hospital cardiac arrest, evidence suggests this should not be attempted before seventy-two-hours from admission. In other cases, such as stroke or traumatic brain injury, the exact timing when a prognosis becomes ‘certain’ (at least, as certain as it can be) may be weeks or even months. In parallel, the family is approached to establish as far as possible the patient’s views and wishes with regard to survival with any degree of functional deficit. A common misconception that can lead to discord is that relatives, or the ‘next of kin’, have a legal right to decide for or against medical treatment on behalf of the incapacitated patient. Unless they have been appointed as power of attorney for health and welfare no such right exists in the UK.

In the majority of cases, where clinicians approach this sensitively, the parties involved will enter a process of shared decision-making. The healthcare team impart their knowledge and expertise of the clinical state of the patient, and the expected prognosis, even if imprecise; the family contribute their expert knowledge of the individual — what their values, wishes beliefs and feelings are. This combined expertise allows those involved to find the right way forward.  For example: the clinical team might say: 

 ‘The best case scenario is that he would never walk or talk again, but he could have some form of interaction, in a situation where he receives full-time care for his basic needs; the worst case scenario is no further recovery and he remains in a coma, reliant on artificial feeding.’

Understanding the clinical scenario, the family might respond: 

‘He would not want that. We can be sure he would not want that.’

However, sometimes no consensus can be reached. This may be because, despite how sensitively the team approach this conversation, the family simply cannot accept the bleak facts of a patient’s prognosis, or — more rarely — because clinicians do not feel it is ethical to withdraw treatment despite the family’s articulation of a patient’s views^[2]. Occasionally, this can be solved with the passage of time, or the communication skills of an experienced clinician. I’m reminded of a talk I attended some years ago by an intensivist in New Zealand, relating the case of a young man who’d received a devastating brain injury in a hunting accident. After many days of showing the family brain scans, electroencephalogram traces and the like, they remained unaccepting of what this really meant – hoping, as many do, for a miracle. Eventually the consultant sat the family down and said simply, ‘His brain is fucked. He is gone. He’s never coming back.’ After what must have been an eternal silence, the man’s father replied through tears: ‘Thank you. I get it now.’

The situation which arose in the case of RS was more difficult because family members were in conflict about what RS would want, given his clinical situation (and then also challenged the treating team, and court-appointed expert, as to his diagnosis and prognosis).  Disagreement about what a patient would have wanted, as in the RS case, exposes a unique challenge to the decision-making process: that many of us will express different viewpoints at different times in our lives, or to different people. 

Professor David Menon, with whom I had the pleasure of working at the Neuro-Critical Care Unit in Addenbrooke’s Hospital, Cambridge, articulated this memorably towards the end of a 2017 talk available here.  Menon used the analogy of the rock band Bon Jovi, contrasting quotes from the protagonist Tommy in two songs. In the 1986 hit Livin’ on a Prayer, they say:

‘We’ve got to hold on to what we’ve got

It doesn’t make a difference if we make it or not

We’ll give it a shot’

By contrast, the 2000’s It’s My Life includes the lines:  

 ‘I don’t want to live forever

I just want to live while I’m alive’. 

This exemplifies two very different perspectives from the fictional Tommy at different points in his life: life at any cost, even a willingness to accept a catastrophic outcome for a tiny chance of miraculous recovery, versus a prioritisation of quality of life — living rather than existing. 

Working in an intensive care unit forces one to confront the brutal unfairness and fragility of life. I have often reflected on my own mortality and made sure those closest to me are aware of my wishes. Have I written these down, in an advance decision or by appointing a nominated power of attorney? Like many – perhaps in my case deluded by the invincibility of relative youth – I have not.  As much as it is encouraged by healthcare staff, the legal profession, and patient advocacy groups, I think it is naïve to imagine that we will be able to avoid these conflicts by widespread public adoption of advance decisions or nominated powers of attorney.

To the contrary, I suspect that conflicts like the case of RS will become an ever more present part of the fabric of 21^stcentury intensive care. We are already seeing this in paediatrics: the high-profile cases of Charlie Gard and Alfie Evans share troubling similarities with the case of RS, particularly the involvement of third parties — foreign governments, pressure groups and independent ‘experts’ who profess opinions that, while in stark contrast to the medical consensus, are the answers to relatives’ prayers. In the case of RS, the court heard the unsolicited evidence of the Reverend Dr Patrick Pullicino, a consultant neurologist and ordained Roman Catholic priest. Despite having never met RS nor reviewed his notes or scans, and having only seen a total of 3 minutes of video clips, Dr Pullicino testified that RS had ‘a 50% chance of being independent in his own home.’ Cohen J was remarkably restrained in his criticism of Dr Pullicino, whose evidence he rejected as ‘vague’ and ‘unsatisfactory’. (See Celia Kitzinger’s blog about Dr Pullicino’s role in the case, here.)

The external involvement in this case didn’t stop there. RS was a Polish citizen. The Polish government granted RS a diplomatic passport in an attempt to remove him from the jurisdiction of the UK courts. In Polish and US media reports, RS was described as a ‘euthanasia victim’. A Polish politician even accused UK doctors of wanting to harvest RS’s organs, declaring them murderers. Such rhetoric from outside sources is reminiscent of the Gard and Evans cases, although fortunately in this case the family and clinicians were spared the painful scenes of crowds of protesters outside police-guarded hospital entrances and online death threats to medical staff.

Personally, I take a dim view of such interventions. The most charitable view of their motivations is a genuinely held belief in the prevention of a needless death or a miscarriage of justice. But the consequences on the family, already undergoing the most unimaginable agony, seem to be ignored. How must RS’s wife and children have felt when lawyers and politicians in a country he hadn’t been to in decades tried to take him away from them at the end of his too-short life? But of all those ‘third parties’, I find the actions of ‘experts’ like Dr Pullicino most concerning. Doctors have a responsibility not just to their individual patient but the public as a whole to be objective. The GMC guidance on acting as an expert witness reads almost as an exact contradiction of Cohen J’s description of Pullicino’s conduct. In particular, the phrases ‘you have a duty to be impartial and objective’ and ‘you must not allow your views … to affect the evidence you give’ are notable. What are the motives of such interveners? In some cases, it is clear that the patient concerned is merely a pawn to advance a personal, political, or other societal agenda.

Ultimately, I fear that the UK may be heading towards a ‘perfect storm’. As medicine — and especially intensive care — continues to push the boundaries of what can be ‘survived’, the public expectation of what can be recovered from grows exponentially. And when cases are tried on social media before they even reach the courts, the chances of such ugly, public confrontations as in the above-discussed cases will only increase. I do not pretend to have answers or solutions to this reality. It may be a pessimistic viewpoint, but we — doctors, lawyers, and the public — can only prepare for and mitigate the potential harm to all involved if we are willing to entertain it.

As doctors we must be humble when determining prognosis and rely strictly on the evidence base, and be sensitive and patient when dealing with families. The best clinicians I have worked with make every decision on consensus, welcome outside opinions, and ensure the individual patient is always at the centre of the conversation. When this fails, medical mediation is a useful strategy. For example, this story, from a parent, is a powerful example of what this can offer. But if all routes have been exhausted, the Court of Protection is nothing to be afraid of. The clue is in the name — the court protects the patient’s life and dignity from infringement, but also protects clinicians from accusations of wrongdoing. If there is an upside to the growing number of high-profile cases regarding ICU patients at the end of life, we can only hope that it is an eventual increase in public awareness of the reality of death, and what medicine can — and cannot — reverse, and perhaps a prevention of some of the trauma experienced by the families of those individuals who find themselves in such tragic situations.

Alex Warren is a junior doctor training in anaesthetics with an interest in intensive care. This post represents his personal views only and not those of any NHS or other organisation. He tweets @alexfwarren

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^[1] The published judgments are:

• University Hospitals Plymouth NHS Trust v RS & Anor [2020] EWCOP 70 (15 December 2020)
• Z v University Hospitals Plymouth NHS Trust & Anor (Rev 3) [2020] EWCA Civ 1772 (23 December 2020)
• Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1) [2020] EWCOP 69 (31 December 2020)
• Z v University Hospitals Plymouth NHS Trust (NO 2) [2021] EWCA Civ 22 (13 January 2021)
• RS, Re [2021] EWCOP 6 (18 January 2021)

^[2] See, for example, the case of Polly Kitzinger here

Photo by Arseny Togulev on Unsplash