By Celia Kitzinger, 21 March 2022
The judgment is now published: London North West University Healthcare NHS Trust v M & Ors [2022] EWCOP 13 (21 March 2022)
On 14th March 2022, I watched a one-day final hearing about a young man in a prolonged disorder of consciousness from which (doctors say) he will never recover.
He also has respiratory failure due to irreversible lung damage caused by chronic aspiration of saliva and gastrointestinal contents, the origin of which pre-dates the cardiac arrest and is due to untreated type 1 diabetes, and which was subsequently made worse by hypoxic brain injury after a cardiac arrest at home.
The Trust was seeking declarations that continuing life-sustaining treatments was not in P’s best interests and that it was in P’s best interests to give him morphine and midazolam (opposed by the family) in accordance with their end-of-life care plan.
At the time of the last hearing, on 25th February 2022 before Moor J (see When doctors are not willing to offer treatments), doctors had stopped giving him any form of clinically assisted nutrition. This is because the damage to his gut (gastrointestinal dysmotility), means that he can’t properly absorb nutrients, and also that food that goes down into his gut is liable to come back up into his lungs, causing aspirational pneumonia.
Mr Justice Moor approved morphine and midazolam to manage P’s (possible) pain and distress, but deferred the decision about life-sustaining treatments until today’s hearing to allow the family to get their own independent expert reports and all the second opinion doctors consulted by the various parties (including the family’s choice of experts – a gastroenterologist and a neuro-rehabilitation specialist), that P is now dying as a result of lung damage.
At the hearing I’m reporting here, before Mrs Justice Judd on 14th March 2022, the Trust seeks a declaration that “it is lawful and in P’s best interests for IV fluids and other life-prolonging treatments to be withdrawn, and for him to be transferred to a palliative care pathway as per the proposed care plan”.
In the view of the Trust, “continuing to provide hydration and active symptom management such as deep suctioning is an interference with the natural process of death and is prolonging his life with no benefit to him. If P can indeed experience distress, then this can fairly be called cruel”.
Treatments that are NOT available options: Clinically assisted nutrition, CPR and treatment escalation
As at the previous hearing (on 25th February 2022), there were some treatments – including the provision of nutrition – which were not ‘available options’, i.e. doctors had decided they were not clinically appropriate, and so they were not ‘on the table’ for the court to consider in making best interests decisions.
As I described in my earlier blog, at the previous hearing just over two weeks ago the judge had asked the Trust to reconsider the matter of clinically assisted feeding (withdrawn 10 days earlier) to increase the likelihood that P was still alive for this second hearing.
Clinicians had stopped feeding P after nasogastric feed was observed coming out of his nose. The hospital says that “as a result of P’s brain damage, normal gut movement is disordered such that food may flow forwards or backwards, or remain in place, giving rise to risks of aspiration into the lungs, or food and air becoming trapped in the gut…. Significant quantities of small bowel contents continue to be aspirated from the stomach”.
The Trust’s position then, as now, was that continued feeding is clinically inappropriate. This means that they were not asking the judge to make a decision about feeding – this was not an available option.
A judge cannot order a doctor to provide treatment to a patient if the doctor concludes that the treatment is not clinically indicated (§18 Aintreee University Hospitals NHS Foundation Trust [2013] UKSC 67).
However, P’s parents and the Official Solicitor were concerned that P’s condition, combined with ongoing lack of nutrition, might mean that he wouldn’t survive until the next hearing. Mr Justice Moor found this argument compelling and gave an ex tempore judgment asking the Trust to reconsider its decision to withhold nutrition.
The judge said:
I am not making an order. I am not even making a declaration. All I ask in this judgment is for the Trust to consider it again, on the basis that this court should have the ability to deal with this case at a final hearing – rather than the matter being taken out of the court’s hands ….. I intend merely to ask the Trust to consider the matter again”.
As I said in my previous blog, this is as close as I have ever heard a judge come to putting pressure on clinicians to administer a ‘clinically inappropriate’ treatment that is not on offer as an ‘available option’.
The judge’s reasons for making that request were summarised in a recital to the Order resulting from that hearing which states:
“And upon the Court declining to make any order or declaration in relation to the provision of intravenous nutrition to the First Respondent on an interim basis, but inviting the Applicant to reconsider its position that it will not provide any nutrition in view of the fact that:
- the First Respondent has been without nutrition since 15 February,
- the application was made on 22 February,
- it is necessary for the application to be adjourned because no party other than the Applicant has had the opportunity to obtain independent evidence,
- it appeared to the Court desirable that the ring be held to enable a final hearing to take place in the First Respondent’s lifetime.”
We learnt at this subsequent hearing that the Trust had indeed reconsidered the matter by commissioning further assessments from three additional clinicians who “all agreed that clinically assisted nutrition (either enterally or parenterally was not clinically appropriate in the context of P’s overall condition including his respiratory condition and profound brain injury.”
This was also the view of the parents’ own expert witness – a Senior Consultant in Gastroenterology and Intestinal Rehabilitation.
The hearing on 14th March 2022 did not, then, include any consideration of whether clinically assisted nutrition was in P’s best interests. This treatment remains not an available option.
As counsel for the parents put it: “No clinician is willing to provide clinically assisted nutrition for P and [the parents] acknowledge with great sadness that this cannot be the subject of a best interests decision”.
This is an important point because it draws attention to, and reinstates in practice, the (sometimes blurred) boundary between ‘clinically inappropriate’ treatment and treatment considered not to be in the patient’s best interests.
I was relieved to see that there were no further attempts, at the hearing on 14th March 2022, to do anything that might be construed as putting pressure on clinicians to reconsider their decision about what treatments were, and were not, ‘clinically appropriate’.
The Trust will also not provide cardiopulmonary resuscitation, admission to the intensive care unit or high dependency unit, surgical intervention, or antibiotics. Like nutrition, these treatments are not ‘clinically appropriate’ and so they are not available options for consideration by the court.
Treatments that ARE available options: hydration, suctioning, oxygen, morphine and midazolam
The Trust was willing, in principle, to provide hydration, suctioning and oxygen if the court decides they are in P’s best interests (even though they are of the view that they are not in P’s best interest). We heard that these three treatments “come as a package” and it’s “simply not clinically possible to slice and dice them”. The Trust was providing these treatments at the time of the last hearing, and has continued to do so.
The Trust is also willing (and believes it to be in P’s best interests) to provide morphine and midazolam. It turns out, however, that the opposition of P’s parents and partner has meant that P has been provided with only limited pain-relieving and sedative medication since the last hearing. This was of considerable concern both to the Official Solicitor and to the Trust.
At the hearing on 14th March 2022, the applicant Trust (represented by Caroline Hallissey) asked the judge to approve an order that it is not in P’s best interests to receive any life-sustaining treatments (including hydration, suctioning and oxygen) and that it is in his best interests to receive end-of-life palliative care according to a care plan that includes intravenous morphine and midazolam.
The family (P’s parents were represented by Sophy Miles; P’s partner was a litigant in person) want all possible life-sustaining treatments to be continued. The parents are “morally unable to give their agreement to a plan that would shorten P’s life. They do not wish him to die”. They also do not agree with the Trust’s end-of-life care plan in relation to pain relief and sedation: they believe that P is being kept free from pain on his current regime and that increasing morphine and midazolam will hasten his death.
The Official Solicitor (P’s litigation friend, Katie Gollop QC) initially reserved her position because – at the time of writing her Position Statement – she’d not had any opportunity to hear the family’s point of view subsequent to expert evidence having been obtained, or to investigate what options were available if the court were to consider continuing life-sustaining treatment to be in P’s best interests. In her Position Statement, she accepts that P “will not live longer than a few weeks at most”, even if his current treatment regime is continued and is concerned with “how best to achieve a good death for P and the three people dearest to him”. Noting the breakdown of the relationship between the family and the treating team at the Unit where P is cared for, she suggests that he might be moved to a different setting (maybe a hospice) where he could continue to receive some limited life-sustaining treatments, along with end-of-life sedation and pain-relief. This could allow a ‘good death’ in an atmosphere that would help his family to “come to terms with his loss so that they were free to remember him as he was, not as he is now”. In her Position Statement, she describes this as a “third way”: “it is not the sedated withdrawal of all treatment advocated for by the Trust, nor is it the lightly medicated continuation of all treatment that the family would want”.
Constrained options: A proper use of the court’s time?
By the beginning of the 14th March 2022 hearing, Katie Gollop QC knew more about the very limited options available in practice than had been apparent at the time of writing her Position Statement.
Although the court was being asked to decide whether or not continuing life-sustaining treatments (hydration, suctioning, oxygen) were in P’s best interests, it had become apparent that if the answer were to be “yes”, the specialist Unit currently treating P would not provide them. Instead, P would be transferred back (“repatriated’) to the hospital that had referred him to the Unit.
This is because the Unit is a tertiary service. Patients are referred to the Unit from hospitals who are contractually obliged to accept patients back again if it turns out that they’re not suitable for treatment there.
The applicant Trust had already provided an email to the court providing written confirmation that the referring hospital would not offer IV fluid if he returned to them.
As Katie Gollop QC put it to the judge, “It would be unfortunate for you to declare it is in P’s best interests to continue with life-sustaining treatments, only for the second hospital to bring an application to this court in the same terms. None of us would want P transferred for no useful purpose”[1].
Even if the referring hospital were willing to provide P with life-sustaining treatments as the parents want (and as counsel for the Official Solicitor was considering may be in his best interests), there were other difficulties with the plan to move P from his current place of care.
One problem is that the move itself might cause him to die sooner than he otherwise would. The family’s own choice of expert, Dr Chris Danbury[2], gave evidence of a high risk (“more likely than not”) of P dying during or shortly after the transfer.
Another problem is that the referring hospital is less well-equipped to provide the level of care that P needs. He’d most likely be treated on an acute medical ward with a lower nurse/patient and doctor/patient ratio than he receives on the specialist unit. This means a less well-managed death.
There had been some consideration of moving P to a different hospital or to a hospice, but Dr Danbury’s view was that “transfer to another acute hospital or to a hospice is unlikely to be accepted by those units if active life sustaining treatment is continued”.
So, in practical terms the options seemed to be either:
(1) life-sustaining treatment is withdrawn, in which case P stays in the specialist Unit and dies in accordance with their end-of-life plan; or
(2) life-sustaining treatment continues and P dies in an ambulance on the way to the referring hospital or shortly thereafter, and has a less well-managed death.
The option the family want – he doesn’t die at all, he recovers enough to be able to return home to be cared for by his family – isn’t seen by any of the experts as a feasible option. As the Official Solicitor put it: “Whilst this may not be something that those closest to P (his parents and partner) are able to accept, the medical evidence is all one way. P’s clinical condition is grave and irreversible and he is dying”.
Counsel for P via the Official Solicitor invited the court to consider whether there was any purpose in holding the hearing, given what appeared to be the very restricted options before the court: “you might decide that this is not a proper use of the court’s time”.
Gollop: Is the position of other potential treaters or other Trusts that no matter what the court declares to be in P’s best interests – and I think that is the position – they will not provide it, whatever the court declares?
Judge: The court does not have the power to order clinicians to provide treatment.
Gollop: So, is this a good use of the court’s time? Is it right to put the family through giving evidence, if transfer from one hospital to another would be to no useful purpose and put him at risk unnecessarily? Part of the puzzle we don’t have is if there’s scope for the CCG to step in and see if there’s a provider that would provide treatment. I’m concerned about whether this should be bottomed out before we go any further.
The Official Solicitor (Katie Gollop QC) referred to the case of N v ACCG [2017] UKSC 22 (§ 38 onwards) which she said had been “troubling me over the weekend”. That case also involved the problem of whether and how the court should engage with matters that are “not on the table” as “available options”. The Supreme Court upheld the decision that the court is entitled to take the view that no useful purpose can be served by a hearing (although Lady Hale took issue with the claim that the court does not have ‘jurisdiction’ over some matters):
“It was a case in which the court did not have power to order the CCG to fund what the parents wanted. Nor did it have power to order the actual care providers to do that which they were unwilling or unable to do. In those circumstances, the court was entitled to conclude that, in the exercise of its case management powers, no useful purpose would be served by continuing the hearing.” (§44 N v ACCG [2017] UKSC 22)
Mrs Justice Judd decided to go ahead with the hearing anyway. Later, she said that “the family would have found it difficult if it had not been heard”– hinting at therapeutic jurisprudence.
From this point on (about half an hour into the hearing), the outcome felt to me like a foregone conclusion.
Oral evidence was given in court by the following people:
- the treating clinician
- independent expert Dr Chris Danbury
- independent expert Dr Andrew Hanrahan
- P’s mother
- P’s father
- P’s partner.
I will describe each in turn.
1. Evidence from Treating Clinician
The treating clinician had already submitted a statement explaining that if the court were to find that it’s in P’s best interests to continue to be provided with hydration, suctioning and oxygen, the Unit would need to transfer P back to the referring hospital in line with their contractual arrangements.
If, on the other hand, the court were to decide that life-sustaining treatments were not in P’s best interests, her Unit would arrange for end-of-life care in situ.
Oral evidence in chief
Asked by her own counsel (Caroline Hallissey) to update the court on how P is now, she said: “He’s slowly fading is the best I can say. His condition has deteriorated since we were first in court. It’s variable, with good days and bad days but there’s a slow downward trajectory”.
Asked about the risks of transferring P, she explained that there was already evidence that moving P causes problems because:
“On his way over to us [from the referring hospital] he developed mucus plugging and got partial collapse of lungs. He had a period on ICU with positive pressure ventilation and if we hadn’t done that he’d have died very quickly. In transferring him back to [the referring hospital] we have a ceiling of treatment in place and there’s a strong possibility that if he was in an ambulance, he would likely get mucus plugs and not survive that journey. Just turning him in bed, repositioning him, we get plugging. Transfer would involve putting him on trolley, into ambulance, taking him back off the ambulance, taking him up to ward – there’s a strong possibility he may plug off and sadly die in ambulance”.
Asked what would happen if the court grants the declaration sought by the Trust, she said:
“Our Unit is specialist in providing end-of-life care for this group of patients. We are experienced in the use of IV morphine and midazolam – carefully titrated. This is important in particular for someone with intermittent respiratory distress, versus the more standard approach of bolus which takes 30-40 mins to take effect. Most units use the subcutaneous route. We use the IV route which works better, gives us more nuanced control, and means the patient can often manage on smaller amounts of meds. Our nursing staff have lots of experience with this.”
Finally, she was asked for her perspective on what the Official Solicitor had described as the “breakdown” between clinicians in her Unit and the family.
“My perspective is this is one of the most difficult situations a family can face. Looking at loosing someone who is very much cherished. People can react in a way that can be challenging for us to deal with. We do our very best to support families and this will be hard for any team under these circumstances. We’d do our best to support the family and see them as part of the team.”
Cross-examination by counsel for P’s parents
In cross-examining the treating clinician, Sophy Miles (for P’s parents), asked first a series of questions about past statements made by the treating team to P’s parents, and then about further investigations.
The parents had clearly placed a lot of weight on (their interpretation of) statements made by the treating team at the Unit in the early days after P’s transfer there.
Shortly after his arrival at the Unit, a senior clinician had said, “rest is extremely important in allowing the brain to recover”. Counsel quoted this from the records and said: “the message to [his mother] was about the possibility of P recovering at that stage, wasn’t it?”
“At that time, we’d known P for not much more than 24 hours. It was not possible to be clear what we were going to be able to do with him. He was in the ICU with a collapsed lung. The expectation is that we try to get the best that we can, travel hopefully, but it doesn’t necessarily mean that they are coming for rehabilitation”. (Treating clinician)
On another occasion, P’s mother expressed the view that P was minimally conscious (rather than vegetative) and the same senior clinician “agreed that was possible”. The treating clinician did not dispute that this had been said and pointed out “we had not yet started to assess him”.
After the decision to stop providing P with nutrition (on 15th February 2022), that same doctor “said there’d be a consideration of reintroducing feed cautiously”, said counsel (acknowledging that nutrition was “out-with the court’s medical decision-making). The treating clinician accepted that reintroduction of feeding can sometimes be possible: “it’s what we call ‘drip and suck’ – we give IV fluids, suction out the stomach, and sometimes it will settle down within a day or two and we can try reintroducing the feed. In P’s case, there were small bowel contents refluxing and dysmotility, and we were unable to reintroduce the feed once we realised the severity of that. It would reflux back and aspirate into his lungs, which is what had been happening. And, therefore, it was contraindicated.”
A string of questions explored with the treating clinician the family view that they’ve seen evidence that P is conscious.
Miles: There seems to be an acceptance that someone in P’s position might respond better to family. Is that right?
Doctor: Yes. It’s very often the case that people will respond better to family members. We have family there as part of the normal assessment process.
Miles: You’re aware that family believe that P responds to them?
Doctor: I’m aware that is their position.
Miles: There is a statement in the bundle from [Partner]. She talks about playing some music to P and her sense that he responds by his expression to her.
Doctor: I don’t think there’s any dispute that he may at times respond, and may be on the border of the vegetative state and the minimally conscious state. All we’ve seen are features consistent with the vegetative state, but we’re very aware that patients may respond preferentially to family and we will normally spend time exploring different responses with family. We cannot carry out an assessment to determine whether P is in the vegetative or minimally conscious state because of his overall extreme medical condition.
Miles: [P’s father] spends a lot of time on the ward, doesn’t he?
Doctor: He does indeed.
Miles: And he observes his son very closely indeed.
Doctor: We have no dispute that he may have some awareness. The disagreement is not about whether he demonstrates consciousness. The disagreement is about what that may mean in terms of his future potential for recovery.
Counsel asked whether there would be any harm for P in having a CT scan to examine his lungs to see whether there was any improvement. “Well, yes,” said the doctor, “even turning him over in bed is causing desaturation. There’s a risk in moving him off the bed onto the scanner and back again. And there’s no point in doing that. The damage to his lungs is clear on the CT scan done by [the referring hospital] and the second scan showed a progression of that”. The judge asked, “so it wouldn’t get any better?”. “Correct”, said the doctor. What about an ultra sound examination at P’s bedside? “It’s physically possible but there would be no point. It won’t change the diagnosis. Ultrasound won’t tell us anything we don’t already know.”
Counsel moved on to the question of pain relief, and the doctor described how “we’re partially managing his symptoms”, “taking the edge” of them, but “hand on heart, not providing the level of palliative care and relief of symptoms that we would normally provide in an end-of-life setting”. Counsel pointed out there “are times he’s described as very comfortable”. The doctor agreed, but said, “the concern we have is about the times when he’s not”. Counsel said P’s father was “concerned that the paracetamol dose has been increased and may cause gastric bleeding”. The doctor replied that “paracetamol is the safest and least sedative pain relief we have in our armamentarium”.
Finally, counsel asked about moving P back to the referring hospital.
Miles: You’ve said that a move for P would potentially be quite dangerous. If you had another patient in that state that you were not going to treat at your Unit, would you transfer them back to Hospital even if it posed a risk?
Doctor: If the patient had an acute infection that was likely to resolve in a day or two, we’d stabilise them and transfer in a day or two. Here there is no light at the end of the tunnel. It’s not the case that if we wait, things will improve. We are a hyperacute centre. We have eight beds to serve the whole of London. I don’t think it would be at all right to move him back to [referring hospital] but I don’t have a choice. […]. The challenge is that the Unit has to manage all the patients. NHS England has to look after all of its patients, including those in hospital waiting to transfer to us. A day or two, yes, but for a matter of weeks, we can’t provide long-term care. That’s the reality of how tertiary care works. I would rather it didn’t.
The doctor confirmed that “the situation is that if he’s transferred, he’d be likely to die in the ambulance. If he stays with us, he’d have a managed death and we’d be able to manage that in a dignified and peaceful way”. There was some commotion at this point as P’s father, seated in court, loudly repeated the doctor’s phrase “a managed death”, with apparent disbelief and evident distress. “I understand”, said the judge, “this is very difficult to listen to”.
Cross-examination by Counsel for the Official Solicitor
In line with her previously stated concern with “how best to achieve a good death for P and the three people dearest to him”, Katie Gollop QC, acting for P via the Official Solicitor, focussed her questions around end-of-life treatment.
Would all three family members be able to be there at the bedside? “We will do our very best to make sure they can all be there.”
If the medication in the end-of-life care plan were implemented, is it right that P would suffer no pain and no distress? “As far as we could possibly achieve it.”
Would the end-of-life medication hasten death? “Giving palliation and sedation carefully titrated does not hasten death: it simply relieves symptoms. That’s why we use IV for titration. With subcutaneous administration, there is more fluctuation, but with constant delivery via IV, it’s possible to deliver the lowest possible doses for symptom control. It does not hasten death. But overall, in moving to an end-of-life care plan and stopping treatment, he could die within a couple of hours, and it might seem that way. But it’s really about allowing the natural thing to happen.”
Counsel asked what the difference would be between end-of-life care at the specialist Unit and end-of-life care at the referring hospital to which P would need to be returned in the event that the court found it in P’s best interests to have continuing life-sustaining treatments. The doctor said she thought it “extremely unlikely” that the referring hospital would be able to deliver IV medications: “It’s not part of standard care to use the IV pathway – which is why the Royal College of Physician Guidance includes administration via both the subcutaneous and the IV routes. I can’t say precisely what the palliative care team at [referring hospital] would do, but I do know that most palliative care teams use the subcutaneous route, not IV.”
Counsel also asked why the doctor had said there was more chance than not that P would die in the ambulance during transfer: “Given what happens when we just turn him on the ward, yes, on the balance of probabilities it’s more likely than not that he’d die in the ambulance or shortly afterwards”.
The judge asked: “If I make the declarations sought by the Trust, that would lead to withdrawal of current treatment and an increase in palliative treatment, and you said that could lead to P dying quite quickly. Would that be something you’d give the family 24 hours to come to terms with?” “Absolutely,” said the doctor. “It’s not something we’d rush to do immediately. Apart from anything else, we’d want to be sure myself or [senior consultant] were on the ward to manage it. These are consultant-supervised programmes. It wouldn’t be a sudden thing.”
The court broke for lunch at this point.
2. Evidence from Dr Chris Danbury
Dr Chris Danbury is a Consultant in Intensive Care Medicine and was the expert chosen by P’s parents, although in the event (in large part due to legal aid funding difficulties) he was actually instructed by the Official Solicitor, and she took him through evidence in chief.
Katie Gollop QC established that Dr Danbury had been to see P and spent about an hour with him – and about four hours in the Unit in total, looking at test results and CT scans. The first CT scan showed “chronic lung injury” which was consistent with “chronic aspiration over time” (i.e., from before P’s cardiac arrest). The second CT scan was “a bit worse”. The lung problems “will not resolve with time. He has a progressive lung problem. The aspiration is ongoing. The tracheostomy he’s got will not prevent him from micro-aspiration and his stomach will continue to produce gastric juices, several hundred millilitres of fluid a day, and some of that will go into his lungs and produce further lung damage”.
Gollop: If treatment were to continue, what is P’s estimated life-expectancy?
Danbury: With oxygen, hydration and suctioning, weeks at most. Without, days at most.
Gollop: Which treatment is the most important in prolonging his life?
Danbury: Oxygen. He’s on 60% oxygen for the majority of the time, and despite that his saturation is in the mid-90s. The fact he’s requiring this amount of supplemental oxygen means that if it was withdrawn he’d become hypoxic very quickly.
Gollop: Within hours? Or days?
Danbury: Within minutes to hours. His lungs are not working well at all.
Dr Danbury confirmed that subcutaneous delivery of midazolam and morphine were “standard practice” and was asked if IV administration would result in a “more dignified death”. Like the treating doctor, he said that it would, because it is easier to give titrated amounts. Midazolam, he said, “is a good anxiolytic” (i.e. a medication that reduces anxiety) and means that (if P experiences anything at all) he’ll “be less anxious during the process of dying”. And morphine he saw as essential for pain-relief, adding that patients who’d survived ICU had reported to him that being suctioned down a tracheostomy (as is happening to P) is “akin to having a red-hot poker pushed down your throat”.
Like the treating doctor he said that the level of risk if P is moved to another hospital or hospice is high, and he agreed that “on the balance of probabilities he would die in the ambulance or shortly thereafter”.
Dr Danbury had sent an email to the Official Solicitor over the weekend in which he’d said, perhaps surprisingly: “…if a hospice or another acute hospital is identified, is willing to accept P and is willing to continue O2 [oxygen], suctioning and hydration whilst delivering palliative care to ensure P remains comfortable and pain free [the OS’s suggested “third way” course of action in her Position Statement], then I could support that approach. The caveat about the risks of transfer would still remain.” (This was read out in court.)
Questioned about this, he reiterated that finding anywhere to accept P was “extremely unlikely”, and that the risk of P dying during or soon after transfer remained. His reason for being willing to support this position was because “I’ve noted the relationship between the treating team and family, and the family may find the process of his dying better somewhere else than on the Unit where he is now”.
In response to a follow-up question from the barrister for the Trust, Dr Danbury said the benefit to P of a transfer was potentially “how he’s remembered after he’s died… from a holistic perspective, rather than a purely medical perspective”.
3. Evidence from Dr Andrew Hanrahan
Dr Andrew Hanrahan was instructed by P’s parents. He’d prepared a 22-page report dated 8th March 2022.
Sophy Miles asked him questions about that report, especially focusing on divergences between what the family experience, and say they want to happen, and the findings and recommendations in his report.
Miles: He’d been started on a pain relief programme when you saw him?
Hanrahan: Yes.
Miles: With what effect on his awareness?
Hanrahan: With the doses given, no more than a minimal effect on his awareness – it’s already profoundly limited.
Miles: The family do feel he’s able to respond to them. Could that be right?
Hanrahan: Sadly not, actually. As much empathy as I have with the social transactions that family feel they have with their loved one, I do not think that what the family are seeing is awareness. (He went on to describe the myoclonic jerking, blinking and other involuntary movements characteristic of vegetative patients.)
Miles: Your recommendation is the need for a terminal care plan You say that will help the family and those caring for P to interact together and provide care for the person who matters most, who is P. I’m just going to ask you whether you think that there could be a similar benefit to continuing the treatment that’s already being provided, allowing the family more time in which to have those interactions?
Hanrahan: Okay, uhm, I’ll answer that question…. It’s my opinion that P is not just in a severe condition, but in a profound prolonged disorder of consciousness, and it’s my opinion that no amount of time, with or without sedation, will change the diagnosis for P. He is in a vegetative state, with a very few behaviours not inconsistent with MCS [Minimally Conscious State] Minus. There is a possibility that this minimal awareness is engendering a physiological distress response – when he’s moved, turned, changed, when his personal hygiene is attended to. The distress might be more than physiological and be experiential. This risk of suffering is not justifiable in my opinion, when balanced against the family having more time with him. There is no professional view that any more time will change P’s underlying neurological status. Even if it did, any further awareness will engender further experiential suffering.
He went on to say that he would anticipate good quality interactions between the family and P in the context of a terminal care plan. “When I saw him, P was dying…” he said. His concern was with “managing the dying process as well as possible”.
The parents were passing notes to their counsel with questions for Dr Hanrahan How was it possible that the scan of P’s brain showed so much atrophy on the first scan, so soon after his cardiac arrest. (Dr Hanrahan conjectured that the brain injury had “a long history” leading up to P’s cardiac arrest and that it was related to the “metabolic chaos” caused by his untreated diabetes). Are the signs of distress different for vegetative and minimally conscious patients? (They’re exactly the same, and “future iterations of diagnostic terminology may do away with this distinction entirely”.) How is it possible to distinguish between action myoclonus (involuntary muscular jerking and twitching) and distress? (They’re quite different phenomena: possible distress is evidenced by hypervigilance, eyes opening wider, increased respiratory rate and increased heart rate).
P’s partner picked up on this last question and Dr Hanrahan expanded by saying that “In P we have heart rate increases, a whole picture of facial distress, autonomic features like pupil dilation, sweating ….”. He acknowledged that this may be “a physical phenomenon” but “we are allowing for the humane possibility that it is experiential and therefore something that we ought to treat”.
The parents asked, through counsel, whether the action myoclonus was “a sign of P trying to emerge” – and P’s father wanted Dr Hanrahan to know that “P opens his mouth on request”. “No,” said Dr Hanrahan, “myoclonus is a subcortical involuntary motor disorder, not a sign of his trying to emerge”. On the matter of command following, he said: “There are so many facial movements, it’s very difficult to know what’s a response or not. To say he’s command-following invokes a much higher level of consciousness than we can support, given the diagnosis”.
4. Evidence from P’s mother
Asked by her own counsel what she wanted the court to do, she said:
“I want doctors to give P the opportunity to get a PEG or TPN and an X-ray to verify the current situation in his gastro-intestinal tract, and to find out for certain the situation with his lungs, and be given a further opportunity to recover. These tests are important for P’s survival. I am in no way in agreement with the palliative care pathway. He was far more responsive before the administration of midazolam. His state of consciousness was ill-affected. Now he’s asleep the majority of the time.”
Asked what P himself would want: “He would want to live. He would want the opportunity to recover, and be supported by his loved ones”.
Asked about further investigations, she said the family was trying to “gain help from someone in London, a very eminent person in gastroenterology”. An appointment had been made for 8.45am on Wednesday. “I don’t wish to divulge their name. Every other door to create the chance of survival for P has been closed, and I don’t want to expose this individual to that”.
Asked about the possibility of P being moved elsewhere she said she had “no issues with the nurses” at the current Unit. The difficulties had been with two doctors – including the one who’d given evidence earlier (“evidently we’ve had our differences of opinion, but it’s not fair to colour the whole situation with that”). Her “main concern” was now “to get P to somewhere safe where he can have the possibility of recovery. If there’s a chance that it could be elsewhere, then I’d advocate for that – and the rest of the family do too.”
Counsel asked for her view of the evidence provided by the experts today. It was clear that she did not accept their evidence that P was dying: “They’ve seen P in a sedated state. They’re professing to give a proper assessment, which I find questionable given the circumstances.”
Cross-examination by counsel for the Trust
Caroline Hallissey, counsel for the Trust, asked P’s mother about P’s condition before his cardiac arrest, saying that the medical records report he was “very malnourished” when admitted to hospital after his cardiac arrest, with “extensive muscle wastage of arms and legs”. Despite his condition, he had not gone to see his GP.
P’s mother said that “he didn’t discuss it with me” and that although “I had my concerns because I knew he was losing weight”, she believed “it was his own decision” whether or not to seek medical attention.
“And the events leading up to the cardiac arrest, you’re quoted as saying he was an adult and you respected his sovereign right not to go to hospital?” asked Counsel. “Yes, indeed” said P’s mother.
The judge asked why P’s mother didn’t want P to have midazolam and morphine when “doctors say that will help P if he’s suffering pain”. She said: “As it stands, the whole introduction of the midazolam has effectively put him on a palliative care pathway. I was loath for midazolam and morphine to be introduced because I knew from what [husband] had told me that those were the very drugs that would be used on a palliative pathway. I didn’t wish for his opportunity to have a chance to recover to be usurped by that pathway.”
Cross-examination by counsel for P via the Official Solicitor
Katie Gollop QC provided P’s mother with the opportunity to challenge the argument (in the Trust’s position statement) that because P refused or avoided medical treatment when he was diagnosed with diabetes in 2020, this meant he wouldn’t want treatment now. “No,” said P’s mother, “that is not the case at all. In terms of emergency treatment, when it’s a matter of life or death, if an individual would wish to live, and P would, and does, then he would not be opposed to treatment”.
The judge pointed out that P had accepted medical treatment when he was a teenager for possible viral meningitis.
His mother added that he had an “inclination to do independent research”. He was “a very intelligent young man, who wanted a wholesome and good life with his partner. He wanted children and a fulfilled existence”.
Re-examination
Counsel for the parents, Sophy Miles, picked up on this last point and asked for more information about P. He was “self-motivated, gregarious, solved complex computer problems, was proficient and a multi-tasker”, said his mother. His decision not to seek medical treatment back in March 2020 when diagnosed with diabetes was because he had “self-motivated will, he wanted to be independent and make his own decisions for himself”.
She ended her evidence by asking for P to receive nutrition if it was possible for him to do so safely “as soon as possible”. She reiterated that she wanted someone else to assess him, and to look in particular at the problems with his lungs and stomach to assess the “current” situation (“not depend on that which has gone before”). What she wants more than anything for her son is “the opportunity to survive as long as humanely possible and for his life not to be taken from him, not to be expunged”.
She felt there had been “undue bias from the clinicians and second opinions” about which she felt “deep concern”. She said “all the doors have been closed. It’s punitive for P’s future”. She was very disappointed that the referring hospital would not readily re-admit and treat P, saying that the doctor there with whom the Unit had consulted was “thwarting my endeavour to get P away from the remit of the [Unit] so he can have a chance”.
5. Evidence from P’s father
P’s father spoke at length about his son, and was apparently the family member spending the most time at his bedside (“since 15th February, I’ve been there 580 hours”).
What came across most powerfully was his pride in his son, who’d “achieved where people said he couldn’t”. He described his son’s achievements at work (“he types like a machine gun and his grammar is perfect”) and how he “trains men to do his job and they’re leaving because they can’t do it”. He’s also “a world-class champion poker player”.
He gave evidence of how he knew that his son was conscious and responding to him (spitting up saliva when he asks him to, looking at him – and away from him – when directed.) He described an occasion when the oxygen became detached and his son “must have been breathing on his own” as evidence that the doctors were wrong about his lungs.
He described his son as a “miracle” and the fact that he’s still alive as “evidence that he wants to live”. “He’s my only son,” he said, “and I love him dearly. He’s a sovereign soul and I see his soul in him. I tell him, ‘Never give up! Never give in! Never surrender!’”.
He fears the doctors will “basically kill my son” and says “there’s a duty they have to save life”.
6. Evidence from P’s partner
Like his parents, P’s partner appeared not to have accepted at all the medical view that P is dying. Like them, she was focussed on helping him to get better. She’s not convinced by the expert reports, believing that they are all “starting from the same background, the same records, the same scans”. They make “assumptions”: “you hear the words ‘hypoxic brain injury’ and you hear the amount of time he was without a heartbeat, and all three clinicians assume on first impressions that he’s going to be a certain way”. Having been present for one of the three experts’ physical examinations of P, she clearly considered it cursory.
P’s partner asked the court to “make the most optimal decision to ensure that P survives”. In her view, that would not happen in the Unit where he is currently cared for.
“But if he is moved in an ambulance, and they do take that risk, there is some chance of survival. Knowing what I know about P, and how much he would want to live, that’s what, ultimately, I think would be in his best interests.”
Final Submissions
On behalf of P (via the Official Solicitor), Katie Gollop QC paid tribute to P’s family, saying that “if love and faith were enough, then P would be much better than he is now. He is deeply blessed in his parents and in his choice of partner”.
As she had said at the beginning of the hearing, she commented that the available options are so tightly circumscribed, that not clear that there is a real choice to be made. With treatment, P might have two or three weeks of life-expectancy, but the Unit he’s currently in is not commissioned to provide P with this treatment, so if the Court decides that ongoing treating is in his best interests, then he’ll be transferred back to the referring hospital. But transfer is not safe. P is in a fragile physical condition and he has a risk of at least 50%, perhaps higher, of dying in the ambulance. Finally, the journey to the referring hospital would serve no purpose since, like the Unit, they do not consider ongoing treatment to be in P’s best interests.
Katie Gollop QC said that were it not for the unfortunate lack of trust and confidence in the treating doctors, the current Unit would clearly be the best place for P. She’s concerned that (despite the court order at the previous hearing), P is not receiving recommended pain relief and there is no guarantee he is not in pain. It isn’t clear, she said, that (apart from advocating for appropriate pain relief) the Official Solicitor has a significant role to play. She is reassured to hear that all efforts will be made to allow the family to be with him at the end.
For the parents, Sophy Miles said it was common ground that nutrition was not before the court as an available option but that the judge could decide that hydration and respiratory support were in P’s best interests – in which case the referring hospital clinicians would have to consider it. She highlighted Dr Danbury’s observation that best interests is wider than the medical and includes how P is remembered. Having heard from all P’s family, she said it is clear that P was a young man who wanted to live and was determined to solve problems his way. “What shines through is that P would take into account the views of his family – his parents and his partner.”
For the Trust, Caroline Hallissey described the case as a “true tragedy” and said that the Trust maintained the same position as that entered in the Position Statement.
The judge referred to the case as “heart-rending” and said she would deliver an oral judgment the following day.
Judgment
The oral judgment was handed down at 2pm on 15th March 2022.
Mrs Justice Judd accepted the evidence that P was dying. It was, she said, “abundantly clear that all the doctors are in agreement” and she would be “remiss” not to state “clearly and urgently” that a terminal care plan should be in place.
The judge recognised that P’s mother is strongly opposed to the end-of-life plan and does not believe that the treating team is acting in P’s best interests. P’s mother, said the judge, believes that the treating team are punitive, that they have lied about P’s condition, that they wish to “euthanise” P and have vested interests in him dying. Both parents believe that morphine and midazolam are harming P and shortening his life. They want P to be given a chance to recover. So, too, does P’s partner:
“The family are close-knit and working together to support P as best they can. Their love for P was plain to see – as is their overwhelming grief. They are simply not able to bring themselves to face the overwhelming medical evidence or assess it in a rational way. The family are entirely united. They hold the hope and belief that P can recover. They ask for further investigations.“ (Judge)
The judge referenced the relevant law, which will be in the published version of the judgment: notably, section 4 of the Mental Capacity Act 2005, Aintree, and N v ACCG [2017] UKSC 22.
She concluded that there was no doubt that P lacks capacity to make his own decision about medical treatment, hence the court must make a decision in his best interests, given the available options. The medical evidence was unanimous. If treatment continues, P will die within weeks. If he receives palliative care only, he will die within hours or days. The family do not accept this – their views are “not based on a rational assessment of what they are being told” and “so strong are the family’s reactions, they suggest that clinicians are telling lies and have malign motives”.
The judge accepted that P would want to live and would have wanted doctors – if they could – to make him better, and to give him a chance of life. But that is not possible, and it is “hard to see why he would accept futile treatment”. In any case, if he had capacity, he could not insist on futile treatment, and neither can the court on his behalf.
Palliative care medication will guarantee that he is not distressed after treatment withdrawal. And although there might be an advantage in transferring him to another hospital for end-of-life care (given that the relationship between the treating team and the family has broken down), he might die in transit or shortly afterwards, with less good care than he would receive at his current Unit.
Granting the declaration sought, the judge acknowledged that the family “will be even more devastated by this decision” and extended her “profound sympathy” for the loss of P who she knew to be “much loved, and treasured by them all”.
Reflections
We all inevitably view hearings like these through the prism of our own experience and our own values.
For some people, I know this this will seem like another account of treatment-rationing in the NHS, or of doctors prematurely “giving up” on their patient and effectively “killing” people with decisions (in this case, judicially endorsed) to permit the withdrawal of treatments without which it is known the person cannot survive: a form of euthanasia.
For me, what the story behind this court case reveals is not under-treatment, but over-treatment at the end of life.
In the face of what was clearly an overwhelming clinical consensus that P was dying, treatment continued not just in the run up to the first court hearing, but then for a further two and a half weeks between the first and second hearings. The effect of this was to prolong P’s dying phase, while failing adequately to manage (because of family objections to morphine and midazolam) the pain and distress he may have been experiencing.
The ‘therapeutic jurisprudence’ of the court offered this family the opportunity for their concerns to be heard, and to ensure that every possible avenue for rehabilitation and recovery had been explored. But my impression was that the family’s views remained entrenched – despite instructing their own independent experts, and despite these experts coming to the same conclusions as those of the treating clinicians (and the Trusts’ experts).
In the end, it seemed to me that the main achievement of the hearing was to offer protection for the treating clinicians who were empowered by the court to carry out what, in fact, had been – from the outset – the only realistic course of action.
The same was true of the case in the Family Division I blogged about recently, in which clinicians sought a declaration that a patient was dead (and that it was therefore lawful to withdraw treatment): she had been provided with ventilation and clinically assisted nutrition and hydration for six days after death, also because of family opposition to treatment withdrawal.
I regularly hear from doctors who continue to provide “futile” and “burdensome” treatments to dying patients because families “insist” on them. While families talk of “not giving up” on their loved ones, and worry that treatment withdrawal is related to NHS “rationing”, health care professionals tell me about the moral distress they experience at continuing to administer treatments they consider entirely clinically inappropriate.
There is a wider cultural issue here about the difficulty we have, as a society, in recognising and accepting death.
This tragic case highlights some of the challenges we need to confront in palliative and end-of-life care.
Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project, and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre at Cardiff University. She is also a co-author of the Report of the Lancet Commission on the Value of Death. She tweets @KitzingerCelia
[1] We are not permitted to audio- or video-record court hearings. Direct quotations of what was said during the course of the hearing are as accurate as possible, based on my contemporaneous touch-typed notes but are unlikely to be entirely verbatim.
[2] In the event, Dr Andrew Hanrahan was instructed by P’s parents, and Dr Chris Danbury by the Official Solicitor. This was in large part because of legal aid funding difficulties.
Photo by Pawel Czerwinski on Unsplash
Promoting Open Justice in the Court of Protection 
One thought on “Available options and best interests in a disputed end-of-life treatment case”