Should life-sustaining treatment be continued?

Note: The judgment has now been published and is available from BAILII here

By: Vedamurthy Adhiyaman, Emma Christie, Upeka de Silva, Rosemary Doherty, Moira Hill, Julie Morton, Adam Tanner and Hugo Wolfe (Edited, curated and with an introduction by Celia Kitzinger). 9th November 2020

Nine public observers attended (via MS Teams) an all-day hearing in the Court of Protection before Mr Justice Poole (COP 1353507, 30 October 2020) concerning whether or not life-sustaining treatment should be continued.  Such cases typically polarise opinion and attract contrasting ethical assessments – and this case was no exception. In what follows, eight observers reflect on what they saw and how it relates to their own professional experience (which spans health care, social work, social policy and law).  

My (Celia Kitzinger’s) position as an observer was unusual because, unlike the hearings I usually observe as part of the Open Justice Court of Protection Project, the person at the centre of the case (“P”) was someone I have met^[1].  Over the last 18 months I’ve been in regular contact with P’s daughter as I’ve supported her in trying to ensure that her father’s voice is heard.  I’ve visited P in the care home where he lives, and spoken with fourteen different members of his family about his wishes, values, feelings and beliefs.  I know a lot about him as a unique individual and also about the medico-legal context in which he is enmeshed.  I’ve read his medical records, communicated with professionals involved in his care, and contributed to best interests meetings about his treatment.  I also attended the two previous court hearings (on 17 March 2020 before Mr Justice Mostyn and 16 October 2020 before Mr Justice Williams) and wrote about one of them here.

In this collectively authored blog post, I’ve drawn only on information in the public domain in presenting a background to the hearing, and I’ve not provided my own commentary. I will do that, in consultation with P’s daughter, in another forum.  

In the context of the Open Justice Court of Protection Project, the role of the blog posts is to enable and support people who’ve observed court hearings to describe and share their experience, and to reflect on what they saw – and that’s what I’ve aimed to facilitate here.   I’ve taken a ‘light touch’ approach to editing these contributions – largely limited to making minor comments on sentence structure, requesting clarification where points were unclear, and suggesting expansion where observers were making novel points not otherwise represented. 

In the first section I provide an introductory background to the case before the judge, and to the relevant law; in the second section, the 8 observers’ commentary is presented organised with reference to some key themes.

1.  INTRODUCTION – BACKGROUND TO THE HEARING

Under English law, medical treatment decisions about an adult who (at the relevant time) lacks the mental capacity to consent to, or to refuse, treatment are usually covered by the Mental Capacity Act 2005.  Such decisions must normally be made in the person’s ‘best interests’ (s. 4(1)) – which gives great weight to, but is not always the same as, what the person themselves would want. It is usually the treating team who bear the responsibility for deciding what course of action is in a person’s best interests, and although they should consult the family, and others who care for the person, about the person’s likely wishes, those people’s views do not determine the outcome.  Family (or ‘next of kin’) do not have the right to make decisions for the patient unless that person has previously appointed them as a Health and Welfare Attorney (s. 9) and granted the requisite power (or unless they are appointed by the court as a Deputy for Health and Welfare after the person has lost capacity – but this is rare and restricted in scope). 

In an earlier blog post, I summarised the position for this family as it was at the end of March 2020. I referred to P as “AF” (the initialisation used in the judgment of March 2020), and to his daughter as “Sarah” (the pseudonym she chose for herself).  After suffering a stroke, his treatment refusals were deemed to be incapacitous – and since he had no Advance Decision to Refuse Treatment (s. 24-26), AF’s treating team made the decision to go ahead with treatment because they believed it to be in his best interests.  The following account is taken from my earlier blog post.

He had a stroke on 5 May 2016.  About a week later, while AF was still in hospital he started refusing to eat and drink and said that he wanted to die.  Doctors decided that AF lacked the mental capacity to make his own decisions and inserted a naso-gastric tube against his wishes.  He turned to his daughter immediately afterwards and said, “this is wrong”.  He pulled the tube out several times – despite attempts to stop him by putting mittens on his hands and a bridle on his nose to lock the tube in place.  Because he was “non-compliant” with treatment, doctors (again against his wishes) made a surgical incision in his abdomen and inserted a feeding tube directly into his stomach (a Percutaneous Endoscopic Gastronomy [PEG]).  He was then discharged to a nursing home where he has remained ever since.  At first, AF was “uncooperative” with feeding and personal care but this has diminished over the years.  Sarah believes he has just become “ground down” over time, because he has tried so hard to tell people that he doesn’t want the medical treatments that are keeping him alive, but he has been given them anyway.  He still refuses to eat and drink enough to sustain his life – a short trial without clinically assisted nutrition and hydration found he quickly became dehydrated.   Sarah’s barrister was presenting Sarah’s case:  that PEG feeding should stop and that her father should be allowed to choose for himself whether he wanted the food and drink that would continue to be offered to him.  Sarah accepts that he would probably refuse to eat and drink and would probably die. As the judge acknowledged, Sarah does not want her father to die but was “fighting for his right to die” because she believes that is what he would want. Sarah lost the court case.  The judge said that: “it would be categorically contrary to AF’s interests for him to be set on the path that will lead to his inevitable death ….  This may be a diminished life, but it is a life nonetheless which has, as I have said, intrinsic quality and from which AF derives pleasure and satisfaction.” 

From blog post. for the Transparency Project

The full judgment is published here.  Sarah was angry and upset by this judgment and felt that her father’s voice (and her voice) had not been heard.

Not quite seven months after this first court hearing, Sarah’s father (now 80 years old) was admitted to hospital because his feeding tube had perished and fallen out.  National guidance (here) had not been adhered to and no advance care plan had been put in place to determine what should happen under such circumstances.  Clinicians responsible for her father’s treatment believed that replacing the PEG tube would be in his best interests.  Sarah expressed the view that replacing the PEG was not in his best interests and not what he would want.  A best interests meeting was held at which the participants were unable to resolve their differences.  The Trust therefore made an application to the Court of Protection for a declaration that it was in Sarah’s father’s best interests to have a PEG reinserted, and that – pending a full-day hearing to resolve this question –  he should continue to be provided with nutrition and hydration via the insertion of a balloon gastrostomy.  

The second court appearance was a one-hour hearing in the “urgent” list before Mr Justice Williams on 16 October 2020.  Sarah was without legal representation and appeared as a Litigant in Person.   The judge approved the order from the Trust.  A replacement balloon gastrostomy tube was inserted (the tract having been kept open with a stent over the previous few days.).  The full hearing was delayed by a couple of weeks in order to allow Sarah time to find legal representation.   Sarah was subsequently offered pro bono (i.e. free) legal support for the third hearing  from solicitor Kate Jackson and barrister Peter Mant, who had also acted pro-bono for her in the earlier hearing before Mr Justice Mostyn.  

Between the second and third hearings, Sarah’s father – who had returned to the care home following successful insertion of the replacement balloon gastrostomy tube – became unexpectedly ill with pneumonia.  He was readmitted to hospital, treated with intravenous antibiotics and briefly placed on an “end of life pathway”.  Sarah and her husband were informed about this at around 10pm on 28^th October, and were told that he was likely to die overnight, that all active treatment had been discontinued and the plan was to keep him comfortable. 

By the following morning, he was observed to have responded well to antibiotics and was no longer for end of life management  – although as Sarah reported in court, nobody phoned to tell her about this and she uncovered the information during a conversation with a nurse who’d been involved with her father in his previous hospital admission.   

Recognising that Sarah’s father was on “a trajectory of recovery”, the treating clinician prescribed further antibiotics, along with other medications, including:  digoxin for atrial fibrillation, blood thinning medication to help him avoid another stroke, anti-cholesterol medication, and Clexane to limit the likelihood of thrombosis – all of which are life-sustaining treatments.  This was the situation at the point when the case returned to court on 30 October 2020.

At the hearing before Mr Justice Poole on 30 October 2020 (the third hearing)  the applicant Trust was represented by Vikram Sachdeva QC, Sarah was represented by Peter Mant and Sarah’s father (“P”) was represented by Bridget Dolan via the Official Solicitor. 

Both the Trust lawyer and the lawyer appointed by the Official Solicitor to represent Sarah’s father took the position that life-sustaining treatment was in his best interests.

The Consultant Gastroenterologist from the Trust was called as a witness and reported that Sarah’s father was “robust” and “responding well to treatment”.  She said she “would not consider it clinically appropriate to consider withdrawing treatment because he has a reversible illness”.  She anticipated that, following medical treatment, he would make a full recovery to the same baseline level that he had been before admission (i.e. not dissimilar to the state he was in when Mr Justice Mostyn made his judgment back in March). Her view was that once he had recovered from pneumonia, the PEG should be replaced. 

When Sarah gave evidence in court she said: 

“The doctor earlier never referred to my dad as a person.  To her, he’s just a robust body. But what about his soul, his brain?  Don’t do it just because it’s medically possible.  Do what’s the right thing to do.” (Sarah)

Sarah’s lawyer argued on her behalf that it was in her father’s best interests to be “placed back on a palliative care pathway” and that it was “not in his best interests to continue with active treatment” (i.e. no further antibiotics, and no clinically assisted nutrition and hydration should be provided).

This hearing was unlike most of the other court hearings about life-sustaining treatment I have observed in the Court of Protection in that a judgment had already been made that it was in the person’s best interests to receive clinically assisted nutrition and hydration via the PEG (at the hearing in March 2020).  Sarah said in court that she believed the decision in March was wrong.  However, the decision in March had not been appealed, and so the question arose as to what place this earlier judgment should occupy in the current proceedings.  The  barrister appointed by the Official Solicitor to represent Sarah’s father focused in court on the jurisdictional issue about whether, as a new judge in this case, Mr Justice Poole could make a different decision about tube feeding from the decision Mr Justice Mostyn had made in March 2020 – and if he could what process should be adopted for doing so.

Yes, you can make a different decision, because of the way the Mental Capacity Act is framed and the way decisions are made in the circumstances that prevail at the time a declaration is made.  The practical reality is that no decision of a judge in the Court of Protection is ever really a final decision.  It can always be reviewed and changed.  That’s why the wording of judgments so often includes, “in the prevailing circumstances of the case”.  But unless there is a relevant change of circumstance [she referred to the Von Brandenburg case],  it would be an abuse of process to make a different decision.  If you are to make a fresh decision because there is sufficient change in circumstance, how are you to make that decision?  Must you take account of all the evidence afresh? De facto, a different process has been adopted here, so I want to look at the jurisdictional basis for doing that. (Bridget Dolan)

(Note: this is quoted as accurately as possible based on my notes made at the time but is unlikely to be verbatim given that we are not allowed to audio-record court hearings)

This jurisdictional issue will be explored in the published judgment.  My understanding of the gist of it is that it means that this hearing – and any subsequent hearings – take place under the shadow of Mr Justice Mostyn’s judgment back in March.  The court cannot “go behind” that judgment (i.e. re-litigate it) if the facts (e.g. P’s medical condition) remain the same.  The court cannot, for example, reopen the question of the values, wishes, feelings and beliefs that Sarah’s father lived by, or the wishes that he expressed, before (or in the weeks after)  his stroke – because Mr Justice Mostyn had that evidence before him at the time he made the judgment in March 2020, and that evidence has (obviously) not changed since then.  Only if new information were to turn up (e.g. “earlier correspondence from P about his wishes, falling short of an advance decision”, Bridget Dolan) could the question of his prior wishes be reconsidered.  This position accounts for the relative absence of information before the court about P’s values and beliefs and the decision he would have made for himself if he were able. (Note added 13 November 2020: see the subsequent blog post by Alex Ruck Keene for a discussion of “For how long does a Court of Protection judgment remain binding?“.)

The judge, in his short ex tempore ruling, found in favour of making the order sought by the Trust, and will lay his reasoning out in full in a published judgment. He said that “at the very least the earlier judgment [by Mr Justice Mostyn] should be treated by me as having very great weight, subject to any changes in circumstance” and ordered that it was in Sarah’s father’s best interests to undergo insertion of the PEG and all ancillary procedures (such as antibiotic treatments and repeat blood tests).  He left it to the clinical judgment of the treating team to decide when Sarah’s father is medically fit enough for the PEG to be reinserted.  He also directed that an advance care plan should be drawn up (as Sarah had been requesting for the past 7 months). 

Observers comments below on the unhappy situation that Sarah and her father find themselves in, reflect on what they saw in court, and describe what they learnt about the importance, for all of us, of planning ahead for future loss of capacity. Most of us would want to minimise the risk of being in this sort of situation and putting our families through painful experiences of struggling with the dilemma of not knowing what we would want, or knowing but finding it impossible to persuade doctors (or the courts) to do the ‘right’ thing.

There are three key advance planning tools provided for by the Mental Capacity Act 2005, all mentioned in these commentaries:  

• a Health and Welfare Attorney (ss.9-14 MCA 2005):  this would have given Sarah a bit more authority as a spokesperson for her father, but I suspect it would likely not have worked in the end,  since attorneys must make decisions in the person’s best interests, and can be challenged in the courts if clinicians believe their decisions are wrong; 
• an Advance Decision to Refuse Treatment (ss. 24-26 MCA 2005): if Sarah’s father had made a valid and applicable Advance Decision refusing a feeding tube, he would never have been fitted with one, since such treatment refusals are legally binding on clinicians; 
• a (written) Advance Statement (s. 4(6)(a) MCA 2005) expressing values, beliefs, wishes and feelings (not legally binding, but taken very seriously as part of best interests decision making – something in writing from Sarah’s father saying that he’d rather die that lose his independence and privacy would carry much more weight than second-hand reports from family members that this was his view). 

Anyone interested in implementing these advance planning tools for themselves can check out the excellent (free) resources at the charity, Compassion in Dying, which also has an information telephone line.  

OBSERVER COMMENTARY

A heart-rending case

Julie Morton, social worker

The whole experience was very emotional throughout, especially when the daughter gave evidence. I was balling my eyes out at this point and felt the pain she was in. I was thinking throughout the hearing that it would have just been a blessing for him to pass away with the pneumonia, as I’m sure P’s daughter felt when being phoned by the hospital. How awful to have had to sit there all night waiting on a call to say he’d passed away, when in fact he was put on antibiotics and getting better! 

Adam Tanner, PhD researcher

The evidence given throughout this hearing was incredibly emotive, P’s daughter had a very clear view of what she believed her dad would have wanted, and that he wished to be allowed to die. She said that “Dad would not have wanted the PEG, full stop… He would be horrified to know he was being treated for no purpose”. She also questioned how this “invasive” treatment, which she described as “horrific”, could be in his best interests. P’s daughter strongly believed that the decision being made was focusing on the views and feelings of everyone else, and not on P. 

Vedamurthy Adhiyaman, Geriatrician

P’s daughter made a very powerful and emotional plea to the Judge and said her dad would not want to live a life like this. She said he lives in a body with no soul and has no meaningful quality of life.  I was really distraught when I heard what the daughter said.  From what she said, I was absolutely convinced that P clearly would not have wanted to be kept alive like this.

As an observer, I had very deep sympathy for P and his daughter. This decision would have been devastating for her as it was very clear that her dad would not have wanted this. I also had sympathy for the medical team caring for P and the doctor who gave the evidence, because they were doing what they should do: abiding by the core principle of preserving life and the law, especially in the context of the previous judgment. And when someone is admitted to hospital, the default position is always to treat the condition unless there is an advance care plan advising not to do so. 

Responses to P’s daughter

Julie Morton, social worker

P’s daughter was great throughout giving her evidence. She should be very proud of how she was in court.  I would have been terrified and hope that I never have a similar experience. She certainly put up a good fight for her father’s wish not to be kept alive.

She really got her point across especially to the solicitor from the Trust who said he understood how she felt.  She stopped him immediately and told him he didn’t. Of course, he didn’t: he wasn’t talking about a close relative as she was – just a patient. I would like to know how he would have felt in the same circumstances if someone official was telling him they understood his situation.  

I really liked how she spoke about her father and the proud man he is, his history of working in the health service for many years and that he always said he wouldn’t want to be a “body in a bed”. I can actually hear someone saying that and know what is meant by it. It put a different spin on it and added weight in my mind that he worked in “health” and had no doubt seen many different scenarios of death. This allowed him to make his own informed wishes about his own passing, when the time comes.

I lost my father last year so it was very emotive for me. I know my dad wouldn’t have wanted life extending treatment either, but thankfully for me, he passed away in his sleep so we didn’t need to make such awful decisions for him like his daughter did. 

Rosemary Doherty, End of Life Care Education Lead

The judge said that P’s daughter was “mourning the father that he used to be’.  This really struck me. The judge is conveying his appreciation of where the daughter is coming from in her views. I do not wish to presume how the daughter is feeling but evidence shows once a poor outcome (such as a life changing illness) is conveyed and accepted, the loved ones can begin to grieve for what is lost. 

Moira Hill, former nurse and End of Life Coach 

As I listened to P’s daughter give evidence, I was struck and saddened by how distressed and angry she was – both at the decision to re-start antibiotic treatment, and at the hospital’s failure to notify her of her father’s positive response to treatment, and the fact that he may survive this acute illness. The breakdown in communication was acknowledged, but I cannot help but feel that perhaps the emotional impact the whole situation has had on her was greater than an apology for not informing her could appease at this time. 

She appeared to be grieving the father who was no longer there. The man he had been, and the role he had played in her life.  Sadly, perhaps amidst this grief, she appears unable to recognise any positives in the life her father still lives. 

Many people find that when a loved one is ill, particularly for a long time, they experience a series of losses – some big, some small, and they accumulate. Sadly, anticipatory grief is not always recognised or acknowledged and therefore appropriate support is not always sought. Whose role is it to identify a family member or carer is struggling? And what help are they offered? Perhaps this is something that needs to be made clearer.   

Cross questioning P’s Daughter

Hugo Wolfe, aspiring barrister

I observed that the questions asked of the medical witness differed from those asked of P’s daughter. This was not just in content but in nature. Questions asked of the clinician were more evenly paced and were not repeated. Whereas P’s daughter was asked the same question multiple times. Unfortunately, this did not help her. The interruptions and specific questions complicated her evidence. This was upsetting to watch in particular because she had to defend her position on what P would have wanted while being cross-examined by the person appointed as P’s legal representative. 

Upeka de Silva, Policy Officer on End of Life Care

The daughter was compelled numerous times to defend the fact that she was not able to visit her father because of Covid. She had to try to disprove that his recent communications were an indication of his happiness (an impossible task); and she had to repeat her belief that placing her dad on an end-of-life pathway was what he would have wanted. No one wants to utter those words but she had no choice.  These observations reinforced my view that people choosing to appoint a Health and Welfare Attorney to represent their wishes when they cannot need to identify a confident and fearless person for this role. Life and death conversations are truly tough and heart-breaking. They have to be ready for a fight.

Where is P? 

Upeka de Silva, Policy Officer on End of Life Care

During the first two hours of the four-hour hearing, I was not able to find P.  P was present only in terms of his white blood cell count and his National Early Warning Score. His voice, his values and what mattered to him were missing. 

The doctor’s report about the PEG and antibiotics was professional and unbiased but focused only on the clinical process of insertion, the risks associated with the procedure, and the likely extent of P’s physical recovery. No one, not even the Official Solicitor (who is supposed to represent P), asked if these treatments were what P would want.  

The Official Solicitor’s cross examination of the gastroenterologist consisted of a summary of the clinical evidence she had already provided, and a statement that the replacement of the PEG is a simple “five-minute procedure under light sedation”. At that point, it was clear to me that P’s voice and values would remain unheard.

It was only through P’s daughter’s powerful testimony that we heard that P had worked for the NHS for many years; that he never wanted to be a “a body in a bed”; and that many of his family members who were devout Catholics had provided statements confirming that he would not want his life prolonged in this way.  Finally, in the third hour of the hearing I saw P as a person and not as a body. 

There was evidence of P’s views having been recently ignored in treatment decisions but that evidence was mentioned and not pursued.  For example, it was disappointing to hear that although P’s daughter was contacted when a decision was made to withdraw active treatment from P, she was not contacted when the decision to re-start active treatment was made. Strictly speaking, that second decision cannot have been a properly made best interests decision, since it did not include her views about whether P would have wanted active treatment.  I am sad that I am not surprised that clinicians did this, and that lawyers let it pass.  It is not that clinicians and lawyers are malicious but that the focus is always on the clinical not on the personal. 

Hugo Wolfe, aspiring barrister
From the outset, I noticed that there was a difference in the legal teams. Both the Official Solicitor who was acting on behalf of P, and the CCG, were represented by experienced barristers, known as Queen’s Counsel. Whereas P’s daughter was represented by a junior barrister working for free. It was upsetting to watch Queen’s Counsel, representing P, cross-examine P’s daughter – especially when she passionately explained that the two barristers simply did not and could not understand P as she does, having known him for more than 50 years. It was like watching a gulf open between P’s representative and P’s daughter, who strongly believed that she was speaking on his behalf.

They disagreed diametrically about what should happen to P and his future treatment. This uneasy experience made me question who properly represents P?  Is it the ‘objective’ and best interests focussed Official Solicitor?   Or is it the daughter who had known P for many years? 

‘Quality of Life’

Rosemary Doherty, End of Life Care Education Lead

This term was used by a number of people in court, but it really does not mean much unless you can hear from the person themselves, who can tell us how they experience their ‘quality of life’.  Of course, we can’t always do this in any meaningful manner, so how do we rely on others to determine QoL?

The care home staff were quoted as saying the patient enjoys poetry being read to him, listening to music, and watching films. The patient’s daughter stated that he stares at the ceiling all day. How much weight can we put on these opinions? How much do we observe the non-verbal signs in someone who cannot always meaningfully communicate how they feel?  Is passivity a sign of contentment or a sign of depression and apathy?  

On the other hand, this also makes me reflect on patients I have cared for in the past. There have been times when I’ve personally felt like questioning how they are able to get up in the morning because I have deemed their QoL to be so poor – but that person believes themselves to have an acceptable QoL and derive pleasure from certain aspects.  The only opinion about quality of life that really matters is the person’s own. 

Moira Hill, former nurse and End of Life Coach

Ann Bowling wrote ‘It appears that doctors often rate the quality of life of the patient as lower than the patient perceives it, and the life itself of lower value than the patient rates it. The only way to face ethical dilemmas about treatments is to ask the patient about their perception of their quality of life and their treatment preferences.’   (p. 149, Bowling, A. (2009) Quality of life in health care decisions, in Medical Ethics and the Elderly Third Edition, Edited by Gurcharan S Rai, Radcliffe Publishing.) Ultimately, the only person who can judge what is an acceptable quality of life is the person living it. 

Upeka de Silva, Policy Officer on End of Life Care

I was brutally reminded of how diverse our individual values are when it comes to quality of life. P’s “joke” that he was 70 and not 80; his reaction to a movie; and a noise that he made which sounded like a chuckle were interpreted by the care home and almost everyone at the hearing as P not being unhappy and having a life worth living. Meanwhile, his daughter found the idea of her dad being given a soft toy and being read poetry to every two weeks as degrading treatment of a proud independent man.  Without your own values written down, the court is left to make this evaluation. That is a tall order and one that I would rather avoid for myself. 

Missing Advance Care Plan

Upeka de Silva, Policy Officer on End of Life Care

The other missing element that came to light towards the end of the hearing was that nobody had put a comprehensive advance care plan in place for P.  Apparently the GP had refused to communicate with the daughter about putting an advance care plan in place – and so a plan had not been developed. Every single guidance document published over the last few months by the NHS and other medical bodies (e.g. British Medical Association, Care Provider Alliance, Royal College of General Practice [here])  highlights the importance of advance care plans.  How this was considered acceptable is beyond belief. 

Rosemary Doherty, End of Life Care Education Lead

The daughter described lack of communication from teams caring for her father.  This should not be happening. And it should not take a court case for a GP to be told to transfer care of a patient to another GP if they are unwilling to interact with the person’s family. 

Moira Hill, former nurse and End of Life Coach

It is clear that advance care planning must now be a priority, something all parties and the judge agreed.  Working in partnership is so important when planning care, and when delivering and reviewing goals of care. Doctors, nurses, carers and family and friends all play a valuable role in ensuring someone lives and dies well, in line with their values, wishes, beliefs, preferences and decisions. And, if communication breaks down, as it appears to have done between P’s daughter and the GP, it is important to be proactive in changing the situation. It should be remembered that family often need individualised support too, and this should be recognised.   

“Palliative Pathway” and “End of Life Care”

Rosemary Doherty, End of Life Care Education Lead

This term ‘palliative pathway’ was used interchangeably with ‘end of life care’ during the hearing.   There needs to be clarity about what these terms mean.  We generally avoid using the term “pathway” as this implies something like the Liverpool Care Pathway which was the subject of a Department of Health enquiry and is no longer used.   The preference when talking about plans for end of life (defined as when someone is likely to die within the next 12 months, General Medical Council) is to refer to an individualised “end of life care plan”.  

Palliative care is a holistic approach to support a person with a life-limiting illness and those important to them (World Health Organisation). A person may need specialist palliative care services at any stage of a chronic illness – not only when death is imminent. A person may need specialist palliative care service even around time of diagnosis as a short-term intervention and still have many years to live. “Palliative care is not just for the end of life – you may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition” (NHS 2018) 

We always encourage health care professionals to be clear and unambiguous when communicating with others, and this should extend to lawyers in the courtroom.  

Planning ahead for future loss of capacity: Advance Decisions to Refuse Treatment and Advance Statements

Adam Tanner, PhD Researcher

In the absence of an advance decision (or advance statement) from P himself, it is impossible to know if his wishes are ever being adequately adhered to. 

Moira Hill, former nurse and End of Life Coach

The daughter’s wish was that antibiotics should not be given, as they would prolong her father’s life. The fact she was not able to achieve for her father what she believed he would want, clearly distressed her. Yet with no LPA for Health & Welfare in place, and no Advance Decision to Refuse Treatment (ADRT) or Advance Statement (AS) describing what her father would or would not find an acceptable ‘quality’ of life – even though she was clear that he would not wish to exist as ‘a body in a bed’ – it is hard to see any other outcome than the medical team continuing to treat a reversible condition in the circumstances presented to them.  

Julie Morton, Social Worker 

It has shocked me to think that verbalising your wishes and feelings to family members isn’t enough and that this can be completely overruled in court. The lack of written evidence of someone’s wishes seems to allow these to be totally dismissed.
It has definitely made me think about my own wishes and feelings and those of my loved ones. I will encourage them to write down how they feel and now to complete an Advance Decision to Refuse Treatment. How simple the process could have been for P and his daughter if this had been done, yet how often is this publicised? I’ve never heard of it.   

Upeka de Silva, Policy Officer on End of Life Care

“I am the only one fighting for my dad in front of all of you” – this is when I was convinced without a doubt that if anyone has strong views about how they wish to be cared for, they must write it down in an Advance Decision and an Advance Statement (freely available on www.compassionindying.org.uk) and they could also appoint someone as a Lasting Power of Attorney for Health and Welfare who is ready to stand and fight for them.  If you don’t want to be silenced when you lack capacity to make treatment decisions, don’t just talk about your wishes, write them down. Otherwise, traditional paternalism will get in the way of patient choice.

Rosemary Doherty, End of Life Care Education Lead

Watching this hearing brought home to me how we as a society must get better at sharing our views with our loved ones and documenting them in the form of Advance Statements and Advance Decisions to Refuse Treatment – especially if we have strong wishes about treatments that we would not want. I think while this discourse is happening in the healthcare community, we need to get it to become part of everyday conversations.  For that to happen, we need the media to help. Dr Kathryn Mannix (in an online seminar I attended) suggests getting a well-known soap opera to develop a storyline covering advance care planning.  The impact of that could be huge! 

The Covid-19 pandemic brought advance care planning (ACP) into sharp focus and this has been one of the main focuses of recent teaching sessions I run. Staff want to know how they can best support patients in ACP and desire training and education to be able to be comfortable in initiating these conversations. There is a clear need for ACP and talking about death and dying is needed in the public domain so we all can be comfortable with discussing these issues. Death is inevitable for us all and if we have strong wishes about what may be important to us at this time we need to get them written down – because,  although the opinions of those important to the person are listened to (as in this court hearing), unless there is documented evidence of their wishes and decisions, there will be further anguish as decisions are made by strangers about the person’s care, treatment, and life.  Watching the court hearing had a huge an impact on me. It’s time to practice what I preach! I have now written my Advance Statement and shared with my sister and my partner. Writing it was actually more difficult than I thought. I worryingly assumed that it would be easy for me as I talk about this on a daily basis, but facing one’s own mortality in this way brought up emotions I wasn’t expecting. Nonetheless it is done – although interestingly my sister had a few questions and felt it wasn’t clear in parts so I need to get moving on version 2! 

Emma Christie, Aspiring Barrister

In this hearing I saw a patient’s daughter articulately and passionately express her view that her incapacitated father would not have wanted life-sustaining treatment.  But the opposite decision was made by the court. She said that her father had expressed the view that he would not want to be ‘a body in a bed’ before he was incapacitated and she had a clear understanding of what he meant and that his current situation would be intolerable to him. The daughter’s anguished plea for what her father would have wanted did not sway the decision of the judge. And so the importance of making a formal Advance Decision to Refuse Treatment became clear to me.  I realised there were situations when I, too, would not want doctors to give me life-sustaining treatments to keep me alive.  For me, these would include if I were in a continuing vegetative state, for example, or unable (long-term) to recognise my family. In such situations I want to refuse life-sustaining treatment, as I would like to die with dignity, before I became unrecognisable to my loved ones and before they had to watch me suffer through a highly reduced quality of life.  I made my Advance Decision to Refuse Treatment on the day after this court hearing. I used the “Compassion in Dying” online tool  and it took me no more than 30 minutes to complete.  I now feel confident that my views would be respected if I were to lose capacity to make my own decisions in future.  I also feel reassured that my family and those close to me would be clear about my wishes, and not have to battle, like P’s daughter to try (and perhaps to fail) to get the right decisions made.  

Vedamurthy Adhiyaman, Geriatrician

We all have the right to choose what we eat, wear, buy, travel, read, watch etc. However, when we lose capacity, our situation changes dramatically forever.   Others decide how we should be treated – even when our families know that the decisions being made are not what we would want for ourselves.

The only way we could prevent such a situation and avoid unnecessary distress to our families (and to healthcare professionals) is to write a valid Advance Decision clearly stating what treatments we want to refuse and under what conditions.  If we don’t, there is a good chance that we might end up in a situation like P.

I urge anyone reading this to write a valid Advance Decision (and Advance Statement) as I have done for myself, prompted by what I have seen in my work as a doctor.  For me, my Advance Decision is important because it means that I won’t be forced, like P, to live my life in a state that I wouldn’t want.  By making my own decisions in advance of losing capacity I’ve ensured that I’m not vulnerable to others having to make decisions on my behalf, based on their perception of my quality of life and my best interests. 

The ‘right’ decision?

Julie Morton, social worker 

I swung from one extreme to the other thinking ‘he should continue to be fed’ to ‘no, he should be allowed to die’. I’m still in mental turmoil as to what decision I would have come up with, if I had been the judge.  I’m still not sure the person’s voice was fully heard. 

Moira Hill, former nurse and End of Life Coach

The daughter is firm in her belief that it would be best for her father if he were to die sooner, rather than go on living the best life he can. And, whilst it was clear that this is not the life her father would have chosen to live, it is the one he has; and the one that has been decided is in his best interest to continue to live – at least for now. It may be that prolonging life in this case would be wrong. But hastening death, by stopping treatment that puts him back in a position he was in at the previous hearing, may be equally wrong.  

Adam Tanner, PhD researcher 

The issue of best interests was peppered throughout the hearing and was highly contested by his daughter. I found that, as emotional as it was, the Official Solicitor and NHS Trust were doing what they truly believed to be in P’s best interests. I similarly do not believe that, on the evidence given, the views and feelings of the care home and others were being given higher regard than those of P. Huge amounts of discussion was had throughout the case from both sides about who P was and is. He was described by counsel for the Official Solicitor as having small conversations, getting joy out of certain things and expressing to the care home staff that he “wasn’t unhappy” with his current situation, something clearly disputed by the daughter.  I am in the midst of writing a PhD on life-sustaining treatment for patients who lack capacity, and have seen a number of contested cases such as this over the past 3 years. They are always highly emotive for all parties involved and this case was no exception. I believe it is completely understandable how P’s daughter felt, and why she believed that she and her father were not being listened to.  However, it would be disingenuous to suggest that both this Court and the previous Courts had not given great amounts of thought and respect towards what is in the best interests for P, having heard many days’ worth of evidence. As Mr Justice Poole stated, I do not believe this is the end of this very tragic case, or that this is the last time P will be back before the Court, but with all the evidence which was given in this hearing I struggle to see how any different decision can be made, unless or until there is a significant change in P’s physiological state.

Vedamurthy Adhiyaman

During the recent COP hearing, I heard that the case came to court earlier this year and out of interest I searched for the judgment from March 2020 and found it here:  A Clinical Commissioning Group v AF & Ors [2020] EWCOP 16. I found the judge’s decision unacceptable and struggled to comprehend mainly based on two facts.  

First was the evidence given by P’s daughter. It was so compelling that P would not want to be kept alive for the sake of being alive. 

“Because my dad worked in hospital, he would often talk about the fact that it is cruel to keep people in a bed for so long if they can’t do anything for themselves. He would often say it was not how it should be, being ‘a body in a bed’ and that he wouldn’t want to be that way. He spoke about the indignity of being in such a situation. He was a very dignified man. He would make remarks such as ‘just put me in a corner by the range with a gun and I’ll sort it out meself’. His wishes and feelings about this could not have been clearer.”

P’s daughter, quoted in the March judgment

I was very perplexed and found it very difficult to believe that professionals had totally ignored the daughter’s report of P’s wishes and initiated – and then continued – clinically assisted nutrition and hydration for P. 

Second was P’s physical and mental retaliation against nasogastric feeding. He had refused to have it, pulled it out, told his daughter that “this is wrong” and even with mittens and then a bridle to restrain him from removing the tube, he managed to remove it again in May and June 2016. He then also resisted feeding via a PEG tube.  These are not the actions of someone who was just delirious. These were categorical ‘no’s. This begs the rhetorical question of how many times a person has to say no before one should accept their decision? 

In my view, dismissing his actions on the basis that he lacked mental capacity and “the workings of an incapacitated mind are a largely undiscovered country” (a phrase from the judgment quoted by counsel for the Trust in the hearing I observed last week) was wrong.

We face the problem of feeding issues following stroke on a regular basis in my own clinical practice. We explore the views of the person before commencing naso-gastric feeding. We have had patients flatly refusing by pushing us away or shaking their heads when we go near them with a naso-gastric tube. We make a decision as a team (speech and language therapists, nursing and medical) and discuss with the family. If it is very clear that a patient does not want a naso-gastric tube, we do not force it.

In my view, by force-feeding P against his wishes, the professionals have violated P’s human rights on many domains. They have breached article 3 (torture and inhuman or degrading treatment), article 5 (right to liberty), article 8 (respect for private and family life), article 9 (freedom of thought and belief) and article 10 (freedom of expression). 

Stating that clinically assisted nutrition and hydration (CANH – the feeding tube) is appropriate because P is now accepting his feed and seems to be enjoying some small things in his life is an example of subordination of a person. What choice does he have after finding that resistance does not work and his will to resist has been totally destroyed? 

For me, this case has involved ethical, moral and physical wrongdoing on the part of the treating teams.  The court has had three opportunities to right the wrong, but has failed miserably. I disagree with the judgment that P’s CANH should continue. The judicial system has not only failed P and his daughter, but also the core values and beliefs of human rights and respect for bodily integrity. By supporting a wrong decision, the Court is sending a signal to the medical profession that they do not need to accept a person’s wishes and can continue to do what they feel is right for a person based on their own perception of what is in that person’s best interests. 

Vedamurthy Adhiyaman (Adhi) is a geriatrician based in North Wales, with a special interest in managing stroke victims and people with fragility fractures. He tweets @adhiyamanv

Emma Christie is a Masters of Jurisprudence candidate at Durham Law School  researching emerging domestic abuse law in the UK, and a future pupil barrister. She has previously blogged for the Project several times (e.g here).   She tweets @emmaleechristie

Upeka de Silva is the Policy Officer at Compassion in Dying and supports people to plan ahead in line with the Mental Capacity Act 2005. She has previously blogged for the Project here.  She tweets @de_upeka

Rosemary Doherty is an End of Life Care Education Lead in Southwest London, with a special interest in ethics and human rights in marginalised groups at end of life. She tweets @rosiedoherty0

Moira Hill is a former nurse, with an MA in Healthcare Ethics & Law. Now, as an End of Life Coach, she supports people to have conversations about death, dying & grief, and the making of end of life plans. She tweets @moirahill67  

Julie Morton is a social worker and best interests assessor. 

Adam Tanner is a PhD researcher in mental capacity law and has contributed previous blogs to this Project (e.g. here). He tweets @AdamrTanner

Hugo Wolfe is an aspiring barrister who graduated in Medical Law LLM from Queen Mary University of London (QMUL). He tweets @HugoWolfe1.

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^[1] My (Celia Kitzinger’s) involvement with P in this case came about as a consequence of the support I have offered to many families as an offshoot of the work I do with the Coma and Disorders of Consciousness Research Centre.

Photo by Martha Dominguez de Gouveia on Unsplash