Treatment withdrawal in the ICU when clinicians and family disagree

By Bridget Penhale, 22nd February 2021

Editorial note: The judgment has been published here.

When I logged into this hearing (COP 13712297, before Mr Justice Hayden) on the afternoon of Wednesday 10thFebruary 2021, I discovered it had been listed as an urgent matter relating to medical decisions about TW, a 50-year-old man with a catastrophic brain injury. 

TW was admitted to hospital in mid-December 2020 following a severe stroke leading to a brain stem infarct.  He then had another severe stroke in late December 2020, since when he has been in a coma.  He is maintained by mechanical ventilation via a tracheostomy tube.   There is no question for any of the parties but that TW lacks capacity to make his own treatment decisions. The question before the court was whether it was in TW’s best interests to continue to receive life-sustaining treatment.  

Although the fundamental starting point in English law is a strong presumption that it is in a person’s best interests to stay alive, the principle is not absolute.   “Important as the sanctity of life is, it may have to take second place to human dignity” (Munby J in R (Burke) v GMC (OS intervening) [2005] QB 424 at [213(o)].

The key case law on this issue is Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67 at [22]:

“ … the focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.”

The applicant Trust (Sandwell and West Birmingham Hospitals NHS Trust) was represented by Nageena Khalique QC of Serjeants’ Inn Chambers.  The view of the clinical team and the independent experts was that TW is extremely unlikely to make any significant recovery from his neurological injury and that life-sustaining treatment (in particular the ventilator, and CPR should it be needed) was not in TW’s best interests and should be withdrawn (or withheld).  The Trust’s proposal was that palliative care should begin immediately and withdrawal from ventilatory support follow shortly thereafter.

Family members, with TW’s brother as the family spokesperson, opposed withdrawal of life-sustaining treatment. Counsel for TW’s brother was Ian Brownhill of 39 Essex Chambers. 

Counsel for TW, via the Official Solicitor, was Bridget Dolan QC, also of Serjeants’ Inn Chambers

The hearing was listed as a directions hearing, i.e. to determine what else needed to be done (and by whom, and to what schedule) in order to make a final determination as to whether or not continuing treatment was in TW’s best interests.  In fact, the hearing – split over two days – resulted in a decision from Mr Justice Hayden:

“I am clear that the continuation of ventilatory support and likely invasive treatment can no longer be reconciled with TW’s best interests. In those circumstances I must grant the declaration sought by the Trust.” (From published judgment, here)

The hearing

On Wednesday, it was determined that TW’s wife, and also his daughters from a previous marriage, wanted to provide evidence. As they were in another country (Canada) it was agreed as appropriate to adjourn the hearing, part-heard, for continuation on the Friday.  This postponement would also allow for the experts involved to watch video-clips that the family had made of TW in hospital so that they could comment on the family’s claims that TW was responsive to them, despite having been diagnosed as comatose.

Once the hearing restarted on Friday, it soon became obvious that it was going to take the whole day. In total the hearing took more than seven hours, and I managed to re-arrange some afternoon appointments so I could hear the whole thing.  Even though the hearing was exhausting for all concerned (more later), I am pleased that I did so.

Medical evidence

The hearing began with evidence from medical experts about TW’s condition. We were provided with a detailed chronology from TW’s first attendance at the hospital Emergency Dept on 12th December 2020, with a severe headache, blurred vision and non-specific malaise, following which he was discharged. He was re-admitted to the Emergency Department five days later on 17th December 2020, with signs of his first stroke – some loss of consciousness, slight left-sided weakness and agitation. A detailed MRI scan some 6 days later revealed multiple infarcts (severe damage and cell death) in the area known as the hindbrain, indicating that TW had had a major stroke. A further very severe stroke, described as a ‘catastrophic brain injury’, occurred on 29th December 2020 and since that time TW has been ‘profoundly unconscious’ in a deep coma and is being cared for, on full life-support, in the Intensive Care unit of the hospital. 

Although the way that the experts provided their evidence was entirely professional, it was clear that they were emotionally affected by the situation. One of the treating consultants choked up during his evidence, when talking about the current situation created by the pandemic, which means that family members are not able to visit relatives (particularly those in intensive care). 

If this was at a normal time, I would be in the coffee room with the relatives saying, ‘I’m very sorry, but that is the way it is’. This is tragic for the family. It’s happening at a cruel and tragic time that is no-one’s fault.[1]

TW’s family had filmed some video clips on their phones which they thought showed that he was responsive to their voices as his body had moved when they spoke to him. These clips had been shown to the doctors who were asked to comment on what they could see on the videos. All the medical experts said that TW’s movements were completely involuntary and not due to any conscious response on his part. 

The video shows movement but in an involuntary way and not due to any particular stimulus or command. I can understand that the movement appears to be in response to the family…. I can understand the pain of the family and understand why they feel hope where none exists.

 It’s just not biologically possible for him to recover given the severity of the insult to his brain stem. […] Sadly, the die was cast on 29th December.  We were set on an inevitable path. He’s not recovered and would appear to have deteriorated.”  

Counsel for the Trust asked the independent expert, a Professor of Intensive Care Medicine, about TW’s movements, clearly visible on the video made available to him the previous day, when TW’s brother was speaking to him: “Does that change your view?”, he was asked.   “It reinforces my view”, he said.  “Those were spinal reflexes, not conscious movements.  Not at all.  They were not in response to his brother’s voice. They were automatic reflex movements that indicate how severe the brain injury is.”

The detailed evidence about TW’s serious and enduring medical condition was difficult for observers to hear, so I can only imagine how hard it must have been for family members to listen to and process.

Family evidence

Mr Justice Hayden asked for TW’s wife to be called as first witness, in advance of hearing from TW’s brother who was second respondent in the case.

TW’s wife, who had previously emailed her view that treatment should not be withdrawn, was first asked whether anything she’d heard from the doctors in court so far had changed her view. “No”,  she replied.  She said, TW had told her: “if anything like this happened to him, there’s no which way that anyone’s going to take me off a ventilator”.  In response to a question about whether she would still hold that view if he never recovered enough to express love for his family, she said, “I think that he can and he will.”  Her fixed view was, “we are going to fight this to the end”. 

TW’s brother’s views were also unchanged by the medical evidence presented to the court.   He was convinced that in the autumn of 2020 (when covid infection and death rates were high), TW had known that something bad was about to happen to him:

I think my brother knew something was going on – it was a bit weird, but I think he knew something was wrong with him, but he didn’t know what.  He was scared this would happen.  He said, ‘if anything ever happens to me, you guys fight for me, because I’d fight for you’.  With Covid we knew people going into hospital and not coming out.  I am representing his voice. He wanted us to fight to the end for him.”

To me, it appeared likely that the conversations reported by the brother were more related to TW’s fears relating to Covid-19 as the brother had said that they (he and TW) had had many discussions about Covid; indeed, there was no evidence that TW had ever specifically addressed the question of what he wanted to happen if he was catastrophically brain damaged and unconscious (although his brother believed that the ‘fight for me’ comment was intended to extend to this scenario too).  

Both TW’s wife and his brother painted a picture of him as a home-loving family man, who enjoyed cooking, Chinese and Indian food, football (a Manchester United fan like the judge!) and watching films. His wife described him as “my best friend and my soulmate”.  But somehow their comments did not seem to fully convey TW as a fully rounded individual at a more personal level. The judge later stated that he was of a view that neither had been “entirely candid” in their answers to his questions (for example, despite the evidence of the medical records, his wife denied that TW had drunk alcohol to excess), but he acknowledged that it was understandable that they would wish to present TW in the best possible light.

After a much-needed lunch break, we heard evidence from TW’s daughters. These 3 young women were in the same room, together with their mother (who was offering support from the side), and their evidence was both compelling and electrifying. The emotional nature of what they had to say and the emotional toll that this had on them was instantly apparent to everyone – and the impact of this on those involved in the hearing was immediate. I was glad that I wept behind a computer screen rather than in open court. 

The daughters took a different view from the family members who had spoken before lunch. They understood the science and what that meant for their father and did not ultimately oppose treatment withdrawal.  But they wanted to be able to see him, to say ‘Goodbye’ – to hold his hand and hug him before he died.

This is an excruciatingly painful time for me and my family”, said the eldest of the three, reading out a prepared statement.  She described trying to make arrangements to come to England from Canada, and how she was stymied by flight (non-)availability and quarantine restrictions.  

My heart has been shattered in ways unimaginable.  All I’m asking is for you to let me see my Dad in person once more.  Please allow my dad to stay on the ventilator until we can get to him.  I’m begging you from the bottom of my heart. I’ve never wanted anything more in my life.”

The hearing of course was not about them, or other family members and what they wanted to happen. It was about what was in TW’s best interests, as the judge reminded us at several points. However, another of the daughters said that her view was that her father would want his daughters to be able to see him before he died, and this had an immediate impact on the court. The question: ‘What would P want (or have wanted) for his daughters in this situation?’ was clearly relevant to the hearing and a factor to be considered in making a best interests decision. The daughters were asking for time to get to England and spend some final moments with their father before he died, in part because they believed that this is what he would have wanted, for himself, and for them. The judge switched tack straight-away, and started to explore the possibility of a 3-week delay in withdrawal of TW’s life-sustaining treatment in order to allow the daughters one last visit. 

Sadly, it became clear that the precariousness and instability of TW’s medical condition was such that the clinicians considered TW was at significant risk of a further cardiac arrest/heart attack in the near future.  He’d already had CPR twice since his collapse in December, and the clinicians made clear that they would not be willing to do CPR again if his heart stopped.  Although it was possible that TW might survive for three weeks, with ongoing life-sustaining treatment, the survival of his body would come at the cost of his human dignity. He would need to be subject to ongoing medical interventions – not just ventilation but also suction of his trachea to remove secretions, administration of drugs, food and fluids, a urinary catheter, cleaning after faecal incontinence, and passive movement and repositioning to avoid or minimise the risk of pressure ulcers and contracture.  He has had intermittent nosebleeds due to irritation from the nasogastric tube. He’s been constipated and regurgitating feed. During periods of involuntary movement and seizure activity, he has bitten his mouth and tongue causing bleeding. He’s had a lung infection and a urinary tract infection (both treated with antibiotics) and these could happen again – as could a cardiac arrest. 

Judgment and its aftermath

After brief closing statements from counsel for all the parties, Hayden J delivered an ex tempore judgment approving the application (from the Trust) that life-sustaining treatment should be withdrawn, that TW be provided with palliative care and he be allowed to die. In relation to a three-week extension of treatment he said: 

Were I to sustain Mr TW’s present situation for a three-week period to enable his daughters to come over, I would be compromising his dignity at the end of life. My obligation in his best interests is to protect that.

The oral judgment took 50 minutes to deliver, reflecting the evident difficulty and emotional nature (and consequences) of the decision. It was clear from Hayden J’s delivery that the case had a powerful impact on him; there were several points where he paused and appeared to be searching for the right words that would convey his understanding and compassion for family members. At a few points it seemed that he struggled with the undoubted impact that his words would have. 

Following the final words of the ex tempore judgment, there was some further discussion about when the decision would take effect. The daughters requested that ventilatory support should not be withdrawn on Valentine’s Day: 

We appreciate the time you took to hear us out and to be a voice for us. But please, could it not happen on Valentine’s Day – any day except Sunday, please. To associate a day of love with a day of loss would be too much.” (Oldest daughter)

It was agreed by the Trust that withdrawal of ventilation would take place the day after Valentine’s Day.  

There then followed a brief discussion about the possibility of an appeal of the decision to the Court of Appeal. Although TW’s brother indicated that he would not launch an appeal, TW’s wife said that she did want to, and the judge told her that she would need to apply as soon as possible (preferably later that day) to be joined as a party and seek leave to appeal the judgment. As far as I know there was not in fact any appeal. In closing, the judge acknowledged that everyone was “emotionally exhausted” and said that we would all remember this case for a long time. 

As usual, I was very impressed with the way that Mr Justice Hayden managed the hearing.  He was rigorous, perceptive and empathetic.  He is able to relate to diverse individuals with humanity and compassion. His clear focus on TW and what was in his best interests, even in this most important and challenging of decisions was very clearly displayed.  Despite the sad outcome, this hearing stands as an example of the Court of Protection at its best. 

Bridget Penhale is Reader Emerita at the University of East Anglia, Norwich and also an independent consultant on elder abuse, adult safeguarding and adult social care. She has contributed to several previous blog posts for this Project including one reporting on another of Mr Justice Hayden’s judgments, under the title “Who is to blame if the COVID-19 vaccination causes harm to P”.  She tweets @bpenhale

[1] Thank you to Celia Kitzinger for this and several other of the longer quotations from the hearing – of which she had many more than I was able to record.   Since we are not allowed to audio-record hearings, these are unlikely to be word-perfect, but are as close to verbatim as Celia was able to make them.

Photo by Silvestri Matteo on Unsplash

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