Withdrawing treatment after brain-stem death: A case in the Family Division

By Celia Kitzinger, 16th March 2022

This judgment is now published (click here).

Today I watched a hearing about whether or not a woman in her 40s is dead.

She’d been admitted to her local hospital Accident and Emergency department on 2nd March 2022 with a severe migraine-type headache and discharged.  

The following day (3rd March 2022)  she was again taken to hospital by ambulance and while waiting to be investigated she collapsed and became unresponsive, with seizure-like activity while being resuscitated.  She was intubated, taken to the ICU, and a CT scan revealed an aneurysmal subarachnoid haemorrhage and tonsillar herniation. There were, the clinical team decided, no neurosurgical options and clinical treatment was futile.  Her Glasgow Coma score remained at the lowest possible level (3).

She was declared dead at 11.45 on Thursday 10 March 2022, following brain stem death testing.  

But for the last six days (since she was declared dead on 10th March), health care professionals have continued to administer various medical treatments that would normally be described as “life-sustaining”, including mechanical ventilation and clinically assisted nutrition and hydration. 

The applicant Trust, North West Anglia NHS Foundation Trust (represented by Emma Sutton of Serjeants’ Inn Chambers), has asked the court for a declaration that the patient is dead, and that – as a consequence – doctors can withdraw mechanical ventilation and ancillary treatments.

The reason the doctors have continued to treat the patient, and the reason the Trust has applied to court, is that the family has opposed withdrawal of ventilation (and other treatments) and has asked for a private second opinion.  

The patient’s next-of-kin (I’ll refer to her as her ‘mother’) participated in the hearing as a litigant in person.  She said:

I’m very unhappy with the application to stop all treatment.  When I went into the hospital on Friday night, I realised that some of the machines were missing, so I felt that the withdrawal had already started in some form before the hearing had even started.  They’ve not allowed us a second opinion.  We can’t hardly visit her without someone pressurising us to switch everything off. It’s been terrible. This rush to switch everything off is awful. I disagree with it.”

A case in the Family Division

The hearing was heard online via MS Teams before Sir Jonathan Cohen on 16th March 2022 in the Family Division of the High Court[1].

Disputes about continuing or withdrawing serious medical treatment are very common in the Court of Protection – but those cases concern people who are still alive.

In this case, the person is dead  – according to the neurological criteria relating to irreversible cessation of brain stem function. (There’s an NHS page about brain death and its diagnosis here.)

The case was heard in the Family Division because it’s outside the jurisdiction of the Court of Protection to make a declaration that someone is (or is not) dead.

The Official Solicitor had been approached and declined to act as litigation friend given the content of the application.  There are no ‘best interests’ decisions to make about a dead person (although in fact I have watched a couple of hearings concerning people who have died after the Court of Protection hearings were instigated e.g. “Life sustaining treatment contrary to his best interests”).  Since the Official Solicitor declined to act in this case, the patient was unrepresented.

Defining death

The definition of “brain stem death” the Trust is using is drawn from clinical guidance – specifically,  the Code of Practice for the Diagnosis and Confirmation of Death produced by the Academy of Medical Royal Colleges in 2008.  (I’ll refer to this as the “Code of Practice” from now on). 

Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe. “(The Code of Practice)

This neurological definition of death has been accepted and endorsed by the courts from at least 1992 onwards (Airedale NHS v Bland [1993] AC 789).  

“Recent developments in medical science have fundamentally affected these previous certainties. In medicine, the cessation of breathing or of heartbeat is no longer death. By the use of a ventilator, lungs which in the unaided course of nature would have stopped breathing can be made to breathe, thereby sustaining the heartbeat. Those, like Anthony Bland, who would previously have died through inability to swallow food can be kept alive by artificial feeding. This has led the medical profession to redefine death in terms of brain stem death, i.e., the death of that part of the brain without which the body cannot function at all without assistance. In some cases, it is now apparently possible, with the use of the ventilator, to sustain a beating heart even though the brain stem, and therefore in medical terms the patient, is dead; “the ventilated corpse”.” (Lord Browne-Wilkinson in Bland).

The patient in the case I watched today was said to meet the criteria for brain stem death.

Her breathing and her heartbeat are maintained by the ventilator but neurological testing by two consultants (and two external opinions commissioned by the Trust) have established brain stem death, as defined by the Code of Practice (2008).

The court approached this whole matter as a technical or procedural application.  The judge interrogated the medical evidence to see if the guidance in the Code of Practice had been implemented correctly. 

There is a significant academic literature on the history, cross-cultural applicability and ethics of ‘brain stem death’ as a socially constructed concept, and a history of court cases – especially in the USA – challenging determination of death on the basis of neurological criteria.  For a review and defence of ‘brain death’, take a look at this article: Current controversies in brain death determination.  

The court in this case did not engage with the theoretical and ethical discussions relating to ‘brain stem death’ as a concept.  It  simply accepted the medical consensus for neurological death (as defined in England and Wales) and sought to establish that it applied to this patient.

This is the approach also used in previous court cases, most notably in the Court of Appeal decision of Re M (Declaration of Death of Child) [2020] EWCA Civ 164.

as a matter of law, it is the case that brain stem death is established as the legal criteria in the United Kingdom by the House of Lords’ decision in Bland. It is not, therefore, open to this court to contemplate a different test.” (§91 Re M)

The Court of Appeal case also makes clear that (as the judge in the lower court also said)  “If a patient is brain stem dead, then there are no best interests to consider. Once those criteria are met the patient has irreversibly lost whatever one might define as life…” 

Sir Andrew McFarlane, who wrote the main judgment said (after quoting the judge in the lower court): “I agree. Once a court is satisfied on the balance of probabilities that, on the proper application of the 2008 Code ….  there has been brain stem death there is no basis for a best interests analysis, nor is one appropriate. The court is not saying that it is in the best interests for the child to die but, rather that the child is already dead. The appropriate declaration is that the patient died at a particular time and on a particular date without more.”

The hearing

Most of the hearing – which lasted for about three and a half hours – was spent gathering evidence from the treating Consultant in anaesthetics and intensive care as to the basis for the claim that the patient met the criteria for neurological death.  The purpose was to discover (in the judge’s words)  “whether the tests carried out in the hospital are so conclusive that there’s no possibility of anyone else coming to a different conclusion”. 

The Consultant looked exhausted.  We were told that he’d been up the whole of the previous night on duty – and he’d been due to be on night duty again tonight but had just managed (he told the court) to find someone else to take over the night shift.

Having been affirmed, and adopted his statement, he was asked by counsel for the Trust whether he’d seen the patient since writing his witness statement for the court on 15th March, and if so whether there had been any change.  He’d seen her this morning.  There was no change.  “She remains unconscious.

Between them, the judge and counsel for the Trust questioned him about what, exactly, an “aneurysmal subarachnoid haemorrhage” and “tonsillar herniation” are.

The judge and counsel went through, in detail, how the brain stem testing was done (and by whom) to ensure it conformed with the Code of Practice.

It appeared that all the correct tests had been done according to the proper criteria. Every test was negative (i.e. the patient did not respond).  

Time of death was recorded, in accordance with the Code of Practice, after the first set of tests.  The tests were all then repeated – with the same outcome.

Counsel for the Trust asked: “When everything is negative, no further ancillary investigations are required. That’s the end of the line?”.  “Yes”, said the doctor, “I’m afraid so”.

Counsel: Are there any circumstances where a second opinion would be requested after two consultants have confirmed the legal time of death?

Doctor:  Not ever in my career. No.

Counsel: What would be the negative of allowing a second opinion?

Doctor:  As a professional, there is no further benefit.  It is not humane to continue the treatment of a person who is brain stem dead.

Judge:  What will happen to [the patient] if the ventilation and artificial feeding continue? Is there any prospect at all that she’d regain consciousness?

Doctor: No, My Lord.

Judge: Or be able to breathe?

Doctor: No, My Lord.

Judge: Or have any perception of the world around her?

Doctor: I’m afraid not, My Lord.

Judge: And what would happen to her organs, her heart, given time?

Doctor:  If we continue treatment?  It’s hard to say this, I’m- It’s beyond my-  I’ve never seen that before, to be honest.  After brain stem death, with time, there will be derangement of blood pressure control, derangement of endocrine systems, like the pancreas, all the systems and organs. And eventually her body will sadly die.

Counsel: You said earlier it was not humane to continue to provide treatment. Do you have ethical concerns with continuing?

Doctor: Yes, it’s not ethical to continue to ventilate a brain stem dead patient. It’s not ethical for the family as well.  And it’s not ethical for the staff.

The patient’s mother was offered the opportunity to ask questions of the doctor and asked who had treated the patient in Accident and Emergency.  She was obviously concerned that on the second occasion her daughter had waited a long time to be seen. “I was horrified they made her wait in the waiting area, because it was quite serious”.  

She talked about how sudden her daughter’s collapse had been “very sudden, very quick, she didn’t have any brain trouble before”, and what a shock it was to find that by the following day “all they were talking about was ‘we need to turn things off’ and I couldn’t think why they were wanting to turn the machines off so quickly”.

She wondered whether her daughter had some kind of infection (“very unlikely” said the doctor) and reported having been told that there were “several” bleeds on her daughter’s brain and wanted to know how many exactly.  (There were two, said the doctor, but “the devastating one is the  subarachnoid haemorrhage”).

I’m just at a bit of a loss really, but the reason we asked for a second opinion was because we were not really trusting what they were saying to us. It seemed to keep changing. We did want to be there for the second test and then we just got a phone call saying they’d done it.  We did have conversations with the nurses, but all they did was keep telling me they needed to switch her off.  I went in unannounced because I didn’t want to be bombarded with messages about switching her off.  Why so much of a hurry?  We would like to spend time with her and pray.” (Mother)

At this point the court moved to a discussion of the time frame for treatment withdrawal and it became crystal clear that the issue was not whether that’s what would happen, but when.

Judge:  I understand you’d want to be with her before the machines are ‘switched off’, to use your term, and other people too.  Can you give us a picture of how many people and over what time?

Mother:  Over seven days it would be about seven to ten people.

Judge:  I want you to understand that the demands on an Intensive Care Unit are quite considerable.  Having large numbers of people there are not easy to accommodate.  That number of people might present a problem for the hospital, as might the period of a week, but I’ll let [the consultant] address that.

Doctor:  I am very concerned about the time frame. The main thing I wish to clarify is that it’s becoming really unprofessional where we continue ventilating someone who is declared brain stem dead.  From my perspective, a week is totally unacceptable – from my professional perspective.  I completely understand that many family members would like to come and see her, but I would ask for a shorter time, because I’m really concerned about this situation as a professional.

Judge: Ultimately it seems to me that it’s probably a decision for the clinical staff.  If your arm was twisted behind your back, if I can put it that way, what would you consider an acceptable period of time to allow the family to come and say goodbye?

Doctor: Twenty-four hours, My Lord.

Judge:  Once the machines are switched off, how long or slow would it be before death took pla- sorry, how can I put it? Before the breathing would completely pack up?

Doctor: It would be a matter of minutes, My Lord.

Judge: So bearing in mind where we are now, late afternoon on a Wednesday, would some stage on Friday be something you could professionally tolerate?  

Doctor: Yes, Friday can be acceptable.

Judge: I don’t really want to indulge in an auction on this, but that’s the doctor’s answer to the question you asked.

Mother: What happens?  Do they put her in a side room, or just take her straight to a coroner?  We would like time with her, even if they had taken her off the ventilator.

Doctor:  Normally we will keep a body for two hours after certification.  I hope that two hours is enough.

Judge: It seems to me this is something beyond my control.

Mother:  So Friday – what time on Friday?

Judge: That is a matter for you to discuss with the doctor. For my part, I would like to suggest to the doctor that perhaps it might be humane to say not before midday.  Would that be something the doctor could accept?

Doctor:  I can accept that, My Lord.

Judge: I recognise I’m stepping outside of my judicial role, but I think it’s important to see what I can effectively mediate.

After an agreement between the Trust and the mother that treatment withdrawal would take place on Friday not before midday, the judge gave an ex tempore (oral) judgment.  He summarised the medical evidence from the Trust. He referred to the Code of Practice for the Diagnosis and Confirmation of Death.  He didn’t read out, but said he would include in the written version of the judgment, paragraphs 28, 29 and 30 from the Court of Appeal decision of Re M (Declaration of Death of Child) [2020] EWCA Civ 164

The judge ran through the evidence that the patient was indeed brain stem dead: her pupils do not react to light; there is no eyelid movement when touch is applied to the cornea; no eye movement when ice-cold water is injected into her ears, no gag reflex, no cough reflex, and no response when pressure is placed on her cranial nerve.  When she was disconnected from the ventilator for 5 minutes, she did not breathe.

He concluded by saying he had no alternative but to conclude that death had been correctly diagnosed, in accordance with the Code of Practice.  It was, he said, “futile for the current treatment to continue” and he made the declarations requested by the Trust.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

[1] I am grateful to Emma Sutton, counsel for the Trust,  for alerting me (and PA journalist Brian Farmer) to this hearing, and for reassuring us that it was in fact a ‘public’ hearing, despite having been listed as ‘in chambers’ (i.e. private) on the Royal Courts of Justice daily cause list.  Thank you also to Emma Sutton for her position statement which was very helpful in supporting my understanding of this case, and on which I have drawn in this blog post.

Photo by Milad Fakurian on Unsplash

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