Capacity to refuse intensive care

Gaby Parker and Celia Kitzinger, 30th October 2021

A man in his 40s (PH) has bronchiectasis.  Last night his oxygen levels became seriously low (79%) and doctors raised with him the possibility of transfer to the intensive care unit, or to high dependency care. He refused to go. 

He’s made it unambiguously clear that he’ll consent to treatment on the ward (where he’s been for many months with other health issues), but that he’s not prepared to move to intensive care.  

He’s since stabilised and remains on the ward. But he is at risk of mucus plugging and acute desaturation at any time.  As Mr Justice Hayden put it, he is “on the precipice of a potential crisis point”.

The question before the court is whether he has capacity to make the decision about intensive care for himself, or whether the judge needs to make that decision for him, in his best interests (and if so, what that decision should be).

Both of us have watched previous  hearings concerning PH (focussed on where he should live)  and are familiar with the details of his medical history.  The Project has published reports of earlier hearings by Gaby Parker on 23^rd June 2021 (here) and then by Jennifer O’Neill on 27^th July 2021 (here), and there have been many other hearings for PH over the last 18 months.

In 2016 PH drank highly corrosive hydrogen peroxide resulting in oesophagectomy (removal of part of his oesophagus), splenectomy (remove of spleen), tracheostomy and a colostomy with PEJ (percutaneous feeding tube into the small intestine).   He’s been assessed as having an “Emotionally Unstable Personality Disorder, Impulsive Type”, exacerbated by an acquired brain injury, following a fit in 2019.  

In January 2020 his placement at a specialist nursing home broke down and he was transferred to hospital, which was supposed to be a temporary arrangement but he’s remained there ever since.  Previous hearings before the court have be concerned with finding him a suitable place to live. At a hearing we did not attend on 13^th October 2021, it was reported in the media that Mr Justice Hayden “slammed” the health board and spoke of “substantial and alarming failures” in PH’s treatment.  But at that hearing (which Mr Justice Hayden referred to today as a “landmark hearing”),  the response of the health board, and of the new psychiatrist treating PH, led Mr Justice Hayden to feel “considerable optimism that his needs would be better met in future”. He indicated that this marked “a new beginning”. 

“Both the recently appointed Chief Executive and [the psychiatrist] recognised that the history of this case was lamentable and did not seek to excuse or hide from it.  Their focus was to look forward and restructure and put together a plan for P recognising that the progress he had made opened up new possibilities for residential care. So only two weeks ago, in what had been a challenging case, things were starting to look much better.^[1]” (from Hayden J’s ex tempore judgment, 29^th October 2021)

That “new beginning” has now stalled because of PH’s serious illness with bronchiectasis, and the urgent issue now concerns ICU treatment.

Having learnt about the hearing about 40 minutes before it was due to start, Celia contacted both of the public observers who’d previously blogged about the case, and one of them,  Gaby,  was able to attend the “second half” (after a break during which Mr Justice Hayden spoke privately with PH).  

In a minor triumph for open justice, this “emergency” hearing even made it on to the RCJ listings shortly before the hearing started, meaning that we were also able to tweet it from the Open Justice Court of Protection feed.

This case (COP 1354439T Re: PH) was heard shortly after 1.15pm on Friday 29^th October 2021 before Mr Justice Hayden via MS Teams.

Reflections on the process: Celia Kitzinger

This was a relatively short hearing (around 3 hours), called in an emergency situation, with counsel who were relatively unfamiliar with the long history of the case. Given that the hearing was listed only 40 minutes before the start time in the list, neither counsel had produced a position statement, and this  meant that I was totally dependent on what I heard in court for the information in this blog. It was also less formally structured than many hearings I’ve observed. I have organised my reflections under three headings: the value of continuity of counsel; capacity to consent; and the judicial interaction with PH’s partner. 

The value of continuity of counsel

Because it was an emergency hearing, two new barristers had stepped in at short notice to pick up the case.  Rebecca Clark acted in place of  Roger Hillman (counsel for the Board in previous hearings) and Counsel for PH, via the Official Solicitor, was Fiona Paterson in place of  Ian Brownhill, who’s acted as counsel in the past.  

It’s hugely demanding for ‘new’ counsel to pick up a long-running case on an emergency basis when other barristers have been previously involved. This led me to reflect that I’ve never heard barristers say in court that it’s important for their client that they – and not a colleague – should continue to represent them.  Hearings regularly end with some attempt to set the date for the next hearing and counsel regularly defer to the judge saying that their own professional commitments elsewhere should not impact upon the judge’s selection of a convenient date.  It is “judicial continuity” that is often sought, while “continuity of counsel” is something I’ve never heard mentioned.  What I saw here was both the value of judicial continuity and the cost of discontinuity of counsel.

It was immediately apparent that, as ‘new’ barristers in this case, counsel were – entirely understandably – struggling to absorb 18 months of prior litigation and voluminous documentation.  Right at the outset at the hearing, Mr Justice Hayden took over, with apologies, from Rebecca Clark when she attempted to summarise the issues: “You’ve come on an emergency basis.  I have the advantage of having been involved in this case over a long period and I will explain the issues as I have grasped them”. And Fiona Paterson recognised the hurdles she was confronting when she prefaced several questions to the doctor with apologies in case the answers were self-evident, or the questions themselves inappropriate, to those who’d been involved in the case longer.  When invited to do a closing summary, Rebecca Clark declined saying that although, as it happens, she’d had some very minimal involvement in PH’s case about two years ago, “I feel I’m intruding on people who know him very well. I don’t think there is anything we can add”. 

In this hearing, judicial continuity did compensate for the (unavoidable) lack of continuity of counsel, given Hayden J’s long (and recent) involvement with the case, but I am not confident that this would always be the case in other hearings or before other judges. I hope judges do give consideration to the value of continuity of counsel, where it’s possible to do so.

Capacity to consent and medical evidence

At previous hearings PH has been deemed to lack capacity in a number of respects, including to litigate and to decide on his residence and care – although in February 2021, he did have the capacity to decide whether or not to accept his clinically assisted nutrition and hydration.

Counsel for the Health Board reported today that PH had also been assessed as having capacity to make an advance decision to refuse cardio-pulmonary resuscitation (CPR). 

“He knew it would upset his partner, but when Dr B was interviewing him, he was able to understand, retain, use and weigh information relevant to a DNACPR [Do Not Attempt CPR] advance decision, and understood that if he should go into cardiac arrest he would not be given CPR as a consequence of his decision and would likely die.  He became visibly distressed about this and it became clear he’d not discussed it with his partner.  He was more able to discuss it when [Partner] left.  He wanted to make this advance decision, he said, because he is in pain and the pain is so bad that he does not want to carry on living if the opportunity presented itself.  He became distressed when [Partner] came back into the room, after leaving to get coffee, but remained committed to the advance decision nonetheless.” (Counsel for the Health Board)

The consultant in respiratory medicine (Dr A) who was treating PH believed that PH had capacity to make his own decision about whether or not to consent to moving to the intensive care unit, where he would be able to receive treatments not available on the ward (including continuous positive airway pressure [CPAP]).

 Dr A said that PH had been consistent and clear in his refusal to transfer to ICU: “When I outlined that if he didn’t [go to ICU], there could be fatal consequences, he was still adamant he didn’t want to leave the ward”. 

There were questions about PH’s physical state (his white cell count, his inflammatory markers, sputum checks and the kind of antibiotics he was receiving), and some questions about what might be motivating his refusal of ICU and what might assuage any fears that he has, or cause him to change his mind.  

Was it because PH was worried about not returning to his current ward but instead being placed on a ward with “elderly people” which he hated in the past?  (He’d been reassured he would return to the same ward.) 

Was it because PH hadn’t fully appreciated that he’d receive sedation and analgesia to keep him “comfortable” in ICU? (He’d been informed.)

Was it because PH was worried he’d “languish in ICU for weeks or months”? Dr A responded (“I don’t think we could promise anything about the duration of treatment in ICU. We can’t promise a short treatment. We just don’t know until the patient is there.”). 

Would it help to involve the new psychiatrist (currently on holiday) in discussions about the decision? (That was planned.)

Counsel for the Official Solicitor asked if it was possible that PH might change his mind about ICU.  Dr A said yes: “he has changed his mind before about treatment, and if he does we’ll admit him to the ICU.  But if he doesn’t…..”.  When the judge intervened to ask “remind me of those facets of his healthcare he’s changed his mind about”, Dr talked about PH’s decisions about feeding (via his tube).

Dr A:    We said we thought he had capacity to decide and that we would respect his decision while continuing to ask if there was something we could change with regard to environment, or staff, that would encourage him to accept feeding  

Judge:  I got the sense that once it was made clear to him that he was- not exactly ‘in the driving seat’ but his own autonomy and integrity was being respected, it gave him a better sense of himself, and caused him to take responsibility for himself.

Dr A:    Yes.

Judge: So even if I were to find him incapacitous, restraining him and forcing him to ICU would not be supportive of his overall wellbeing.

Dr A:    I don’t know.  That’s difficult to answer. That’s why we’re here today.

Judge:  Yes.  That’s for me to answer on my own, rather than to ask you.  

Counsel for the Health Board asked Dr A:  “what are your concerns about starting treatment in ICU?”.  He replied: “It’s more that we’re wanting to clarify his capacity to consent or refuse ICU transfer. It could happen very quickly.  We need to prepare ourselves for the fact that he wouldn’t be consenting to that, and so we’d be doing it in his best interests.  Obviously if he deteriorates again and said he wanted to go to ICU we would provide that.”

I’ve watched many doctors give evidence in court and have not always been convinced that they have an adequate grasp of issues relating to capacity and decision-making.  Happily, that was not the case here.  This doctor clearly believed that ICU treatment could be effective and successful, but also recognised that a capacitous person had the right to refuse it nonetheless.  He was willing to provide treatment contrary to PH’s wishes if the court determined that PH lacked capacity to make his own decisions and found treatment to be in PH’s best interests.  He declined to express a view about PH’s best interests himself, and considered PH to have capacity for this decision.

The issue of PH’s capacity to make his own medical decisions had been addressed in a report by a consultant clinical psychologist just a few weeks earlier (although the focus of the report was on capacity to decide about residence on care, on which he was found to lack capacity). Mr Justice Hayden outlined some of the key findings of that report that indicated that PH could understand, retain and weigh information about all aspects of his medical treatment, and was fully able to appreciate that death would result if he refused some of these treatments. The report showed, the judge said, that PH is “a man determined to assert both his autonomy and his personal dignity”. 

Judicial interaction with PH’s partner

In most of the interactions I’ve seen between Hayden J and family members, the judge says relatively little – asking questions, prompting family members to speak.  This interaction was unusual: PH’s partner got to speak just two words (“Yes” x2).

“I would like to speak to [Partner] now.  I am not going to require evidence on oath.  We have spoken many times and I have heard what you have to say and I could almost write in advance now what I know you want and how you feel.  But this is a big one about PH’s own rights and his capacity.  I’m not giving anything away when I indicate to you that this is his decision, and not mine.  You would wish me to take it, wouldn’t you.  (Yes.) You would wish me to compel him to go to ICU. (Yes.) And for PH and for you, I could wish so too.  But it’s not up to me.  It’s his decision.  I’m sure you’ll slug it out with him and try to persuade him, and best of luck to you.  But I don’t think you will oppress his own character if that’s what he wants to do.  Now go and get your lateral flow test, and get on the road back to that hospital as soon as you can.”

Of course, this speech from Hayden J did in fact give a great deal away and pre-empted the judgment.  In saying that it was PH’s decision “and not mine”, the judge was indicating that he would find PH capacitous to make his own decision about ICU.

Hayden J’s speech also went to the heart of an issue I’ve observed in many interactions in families when someone is refusing medical treatment – either contemporaneously, or in advance.  Overwhelmingly, family members try to dissuade the person from refusing treatment, saying that they don’t want them to die, pleading with them not to “give up”. Born of love and desperation –  and, sometimes, anger that the person is preparing to leave them –  as well as a need to show the person how very much they care for them, this approach can nonetheless be very painful and challenging for the person wishing to refuse treatment.  This seems to have been so for PH from the account (described above) given by counsel for the Health Board about the conversation relating to PH’s advance decision to refuse CPR, and his distress when addressing his end-of-life decisions with his partner.  

In supporting people to write advance decisions to refuse treatment ([ADRTs], ss. 24-26 Mental Capacity Act 2005), I have often been told “my daughter isn’t ready to let Mum go”, or “my children will want me to have every treatment under the sun, but I just want to be left to go in peace”. That’s why they’re making ADRTs – to ensure that the decisions remain theirs and not those of relatives who would try to influence doctors’ decision-making in the direction of (what for them would be) over-treatment.  I also hear from many people making ADRTs that they are reluctant to appoint relatives as Health and Welfare Attorneys (ss. 9-14 Mental Capacity Act 2005) with the power to make decisions about life-sustaining treatments because they fear that the people who love them will try to keep them alive as long as possible.  Facilitating conversations between people making advance decisions to refuse treatment and their families is one of the most challenging and rewarding aspects of my work in this area. (For practical information about ADRTs and Lasting Power of Attorney and how to make them, see the excellent website by Compassion in Dying.) 

A break, closing submissions, and the judge’s decision: Celia Kitzinger

There was a break in the court proceedings as Mr Justice Hayden went to speak (remotely) to PH, who prefers to speak to the judge in private. Gaby was able to join when the hearing resumed.

 In a brief report on his return, the judge said he “was left with the very clear impression that PH was entirely capacitous on this issue… there was nothing at all that I could see that led me to doubt the preponderant evidence that I have heard today”. 

Asked to make closing submissions, counsel for the Health Board declined (for reasons quoted above).  Counsel for PH did make a closing submission. She said that “the evidence appears to be all in one direction, namely that PH has capacity to decide whether or not to have treatment“. This means that the court has no jurisdiction under the Mental Capacity Act 2005 to decide that PH should be transferred to the ICU (or High Dependency Unit) if he were to deteriorate. She then went on to say that it appeared unlikely that this was a case in which the court could decide that PH fell within its Inherent Jurisdiction on the basis he was a vulnerable adult with which the judge heartily agreed.

“That jurisdiction is a very narrow strip of land and it might seem an extraordinary thing to say, but for all he has been through (and PH has been through many things) he is not vulnerable in that way. He’s an adult who knows his own mind.”

In a short ex tempore (oral, ‘in the moment’) judgment, Hayden J acknowledged that “it is always difficult when a treating team see a viable course ahead and see a patient who is resistant to it” but concluded that PH “both has the capacity to take the decision for himself and is entirely entitled to take the decision that he, and not me, considers is right for him.  He is now at the helm of events and I wish him well and very much hope that I have the chance to see him again”. 

For me, this was a quintessential ‘Hayden’ judgment in its emphasis on the right of individuals to make their own decisions where possible, and the prioritising of autonomy over protection.  

Reflections on the judgment: Gaby Parker

It was a privilege to be able to join the second half of this urgent hearing before Hayden J, hear the closing comments from counsel and the ex tempore judgement. Eloquent and considered as ever, the words from Hayden J’s judgment that have reverberated in my mind since are these:  ‘The foundation of human dignity is respect for autonomy…’.

Foundation: the basis and strength which underpins the structures we see

Justice Hayden affirmed the strength and determination he saw in PH, reflecting that he is a man who knows his own mind. He honoured the love and commitment shown to PH by his partner, noting that she is ”his emotional rock” and the person who has stood by him in the face of great personal demand. He took care to acknowledge the emotional impact his decision would have on PH’s partner, gently honouring her understandable wish to continue encouraging him to accept intensive care treatment if required,  whilst simultaneously affirming that this decision must ultimately remain with PH alone. In this I was reminded of the socially constructed nature of decisions and decision-making: the ways in which all our beliefs, values, judgments are founded on and actively shaped in the context of the relationships we experience.  I wondered how this might feel for PH’s partner, connecting with my own experiences of how heartbreakingly difficult it can be to stand alongside someone you love whilst they make (and bear the consequences of) a decision you wholeheartedly wish could be different.  I wondered whether she would be able to join PH in celebrating the affirmation of his autonomy, or whether this would be too much to ask of herself? 

Dignity:  the state or quality of being worthy of honour or respect

Justice Hayden made particular reference to the role he perceives control to play in PH’s relationship to care and treatment.  He noted that many of the challenges he had heard about over various hearings relating to  PH’s care and treatment have been ways in  which P has “sought to exercise the very limited control he still has” for example, whether to eat, whether to accept treatment. 

I found myself wondering if use of the word “control” brings an (unintended) negative valence. What if, in place of control, we centred dignity as the driving factor for PH?  Being in control of our bodies- what and when we eat, how and when we use the toilet, what touch we accept and decline – these are all examples of things we learn as we develop, and fundamentals we expect to be protected to support our dignity. Yet they are all decisions that can be taken away from a person who is deemed to lack capacity.  Viewed through that lens, is it surprising that PH would resist perceived restrictions in an effort to retain emotional/psychological dignity where personal/physical dignity has been lost? 

The respect offered by Justice Hayden to PH was evident.  PH was spoken of as an equal; a man who could enjoy the satisfaction of his football team having recently comprehensively beaten that supported by Hayden J (a moment of banter which Hayden J relayed with sanguine grace!)  I felt the depth of respectful compassion offered in the language with which Justice Hayden relayed his conversations with PH. Whilst ex temporejudgement must clearly have been expected in such a situation, I was also struck by the respect this offered PH: he would not be left ‘in limbo’ awaiting a reserved judgment about his life at a time when, should his condition deteriorate, his life could easily hang in the balance.  

I was also struck by the respect offered to the health professionals involved.  Justice Hayden has previously spoken in strong terms of the failings he has observed in the process and delivery of PH’s care by the healthcare organisation involved. It was therefore heartening to see that balanced today with praise for the intervention and leadership now being offered by an experienced Psychiatrist (acting as de facto clinical lead) and for the close liaison he observed being in place now between psychiatry, respiratory and intensivist specialities. Hayden J commented on the ‘…heavy professional commitment…’ from all clinicians and indeed legal representatives, which along with the use of virtual platforms, had made it possible to deal promptly with the urgent issues raised and to include PH in the process. He made reference to health professionals appearing in ‘scrubs and hoodies’, with the days of consultants appearing in court ‘wearing bow ties’ being a thing of the past. It struck me that there was an important message implicit here- that decisions should not be made based on such superficialities that might tend to imply expertise, privilege or importance, but rather that we should all be attending more closely to what that person can bring and share with the court. I wondered if this might also go some way towards more clinicians feeling able to offer opinions to the court; removing the pomp and circumstance serves also to remove the intimidation factor that deters so many. 

Autonomy: freedom from external control and freedom to exercise choice

Hayden J was at pains to robustly emphasise that this was not a case in which he had any doubt about PH’s capacity to make his own decision: ‘..this is not a case in which we are relying on the presumption of capacity…. It’s not that I’m not satisfied that it’s been rebutted.  I am satisfied that PH is fully capacitous to take his own decision as to whether or not he moves to the ICU”. 

Celia and I reflected afterwards how relatively rare it is to observe a hearing where P is deemed to have capacity for a decision of this magnitude/importance. (There is another such judgment here.)  In this case, it seemed there was little challenge to the presumption of capacity from any parties. 

Whilst brief mention was made regarding whether the inherent jurisdiction of the COP might apply, this was raised with little conviction, and as noted it was promptly set aside by Justice Hayden with the wonderfully succinct line ‘the inherent jurisdiction is a very narrow strip of land’. 

I wondered how the experience of previous hearings in front of Hayden J relating to PH had influenced the approach of the healthcare provider: were they now experiencing a sense of lost autonomy having been so comprehensively examined and instructed to action by the court? I wondered if this had helped develop a greater awareness (at an organisational level) of PH’s experience of lost autonomy; I certainly hoped so.

We understand that the judgment will be published on BAILII and will link to it from this blog when it’s available.

Dr Gaby Parker is a Consultant Clinical Neuropsychologist with Central London Community Healthcare NHS Trust, and has an independent medicolegal practice with Allied Neuro Therapy Ltd. She has a specialist interest in complex interdisciplinary community neurorehabilitation and mental capacity following acquired brain injuries. She tweets @gabyvparker

Celia Kitzinger is co-director of the Open Justice Court of Protection Project and tweets @KitzingerCelia

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^[1] We are not permitted to audio-record hearings, so quotations are based on notes taken at the time and are unlikely to be verbatim.  They are as close as possible to what was said.