By Bonnie Venter, 1st-4th March 2022
UPDATE: The judgment in this case is now published: Manchester University NHS Foundation Trust v WV  EWCOP 9 (08 March 2022). Latest news: “Autistic kidney-row teen’s transplant ‘a success’“
I’m watching a four-day Court of Protection hearing centred around the legal question of whether a kidney transplant is in the best interest of William, a 17-year -old with a rare kidney condition. The hearing (Case No. 13866627) concerning started just after 14:00 on 28th February 2022.
To quickly get up to speed with the background of the case you can read my introductory post here. You can also have a look at the brilliant live update tweets from George Julian (@GeorgeJulian). Since writing my previous post, I’ve received copies of counsel’s position statements for this hearing (thank you to the lawyers involved!), so I now have much more detail than when I wrote my introductory post, and I’ve provided a new “Background summary of the case” below
Access to this hearing was a little stressful because the hearing hadn’t been listed on CourtServe so there was no publicly available information about which email to use to gain access or when the hearing would start (or even that it existed). With the support of Celia Kitzinger from the Open Justice Court of Protection Project, I was able to join the hearing from the start because she took the time out of her Sunday morning the day before to assist me in reaching out to counsel and the judge’s clerk – both of whom were incredibly helpful in enabling me to gain access. I was really impressed by the fact that I received a link to the case from Mrs Justice Arbuthnot’s clerk early this morning and was able to join the hearing from the start.
Whilst I sat observing the case from the comfort of my MS Teams screen, rain pouring down outside, I couldn’t help but think about how observing the hearing is similar to playing with a kaleidoscope as a child. At first when you look, the pattern seems blurry but as soon as you start to adjust your gaze and turn the cylinder, the image becomes clearer. Day 1 of William’s case was like that first moment you stare into the kaleidoscope and squint a bit to try to decipher the image…
Background summary of the case
The legal representatives in this hearing are Helen Mulholland (for the applicant Trust), Emma Sutton (for William, via the Official Solicitor) and Victoria Butler Cole QC (for William’s mother, Amy McLennan, the second respondent). The judge is Mrs Justice Arbuthnot.
I can’t help but to pause here for a moment to quickly add how inspiring it was to see a Court filled with an all-female legal team and a female judge! Especially in a field where – even as recent as my own undergraduate degree – females were advised to rather pick areas of law outside of the court where they’d be able to divide their time between work and care-giver duties.
William Verden is at the heart of this matter. As is to be expected at this stage of the hearing we know a great deal more about his clinical condition than who he is when he’s not being viewed as a ‘patient’. But the Official Solicitor did help us to form an image of this young man, when she spoke about his good quality of life outside of the hospital and some of his hobbies, which include golf, laser-tag and football.
Clinically, William has reached end-stage renal failure which has been caused by his rare kidney condition (steroid resistant nephrotic syndrome) – in other words, William’s kidneys cannot fulfil their function on their own and due to this he is undergoing dialysis treatment. Dialysis is unfortunately only a temporary solution in a situation like this and ultimately William requires a kidney transplant to survive. Without it he is unlikely to survive more than 2-3 years. William also has diagnoses of moderate to severe learning disabilities, autism and ADHA with accompanying behavioural disturbances. It is uncontroversial between the parties that William lacks capacity to make decisions about his treatment options.
The Court of Protection has been asked to decide whether a kidney transplant is in William’s best interests, applying s.4 Mental Capacity Act 2005, which requires the court to set aside any assumptions and consider all the relevant circumstances, including William’s own past and present wishes and feelings, his beliefs and values and any factors he would be likely to consider if he were able to do so. There is evidence that William understands the basics of the choice he faces (that a transplant gives him a chance of extended life without the need for continued haemodialysis, but that it may not work) and he’s been consistent in his wish to have a transplant.
A patient’s wishes are not, of course, determinative of his best interests and it became obvious that the question the court has been asked to decide is not an easy one to answer.
The Trust’s position: The challenges soon became clear in Ms Mulholland’s opening statement where she acknowledged the complexities of the case and stated that ‘the decision that is to be made by this court is an extremely finely balanced one and one which comes with significant risk to William either way.’ The crux of the problem is that William would need an extended period of elective ventilation and sedation to ensure compliance with post-operative care, as he will otherwise not be able to tolerate treatment and will pull out lines and catheters. There is also a high chance (between 50% and 100%) of disease recurrence in the transplanted kidney, and this would ordinarily lead to a need for an intensive treatment, “plasma exchange” which is delivered daily in sessions of 6-8 hours at a time (alongside haemodialysis). Two intensivists (one instructed by the Trust, the other by the Official Solicitor) agree that the impact of sedation and ventilation to enable post-operative care would be acutely distressing for William and that he’d experience “long term psychological injury that would decrease his quality of life”, including Post Intensive Care Syndrome. The two experts consulted were of the view that ventilation and sedation “would potentially allow his transplant to succeed but as at a very significant cost to his wider health, both physical and psychological”. In sum, the Trust view is that there is a low chance of successful transplantation outcome and that the ‘interplay between William’s physical and mental needs’ makes his case, and especially his treatment plan difficult, and unique to him. Due to this, the Trust is:
“not able to agree, on the basis of all the evidence, that renal transplant is in William’s best interests, given that he would be put through burdensome and painful treatment which could ultimately be futile, would be likely to cause him injury – physical and psychological – and which, it is submitted, could compromise any future treatment he might require”.
William’s mother, Amy does not agree with the Trust’s position and believes that kidney transplant (whether from a deceased or living donor) is in his best interests. She would like the issues about post-operative care to be looked at “with a creative approach and an open mind”, asking what can be done to maximise the chances of William being able to tolerate treatment, including support from trained staff, and having clear strategies and plans to respond if William becomes agitated. It became clear from exchanges in court that William’s mother recognises that kidney transplantation may not work: all she is asking is that it should be attempted, and that if the disease recurs in the hours or days after surgery that plasma exchange should be attempted for a short period and if that also fails, then. “with very heavy hearts” (Victoria Butler Cole’s phrase), it would need to be accepted that the attempt had been unsuccessful.
The Official Solicitor’s position (note it’s a preliminary position which may be amended after oral evidence has been heard) is that “the strong presumption that in favour of treatment that would or might prolong his life has not been rebutted – particularly where attempting the proposed treatment cannot be said to be futile or where there is no prospect of recovery.” A successful kidney transplant will prolong William’s life, it accords with his wishes and feelings (and those of his family), and the “valid” concerns about compliance with post-operative care should be addressed through person-centered care and reasonable adjustments to enable the delivery of that care. However, the Official Solicitor also recognises three key facovers which point against William having a kidney transplant: the limited chance of its success, the risks involved in sedating and ventilating William, and the professional opinion of William’s clinical team, and second opinion evidence from a consultant paediatric nephrologist and a consultant nephrologist, that a kidney transplant is not in William’s best interests. The decision is “finely balanced” and final submissions will be made at the conclusion of the oral evidence.
Day 1: The first witness: The treating nephrologist
Today’s hearing predominantly focused on the first witness for the Trust. The Court of Protection often relies on expert witnesses to help them to understand facts of the case that is beyond the expertise of the Court. Basically, in a case like this, they will help the court to grasp the intricacies of William’s condition, the complexities involved with transplanting an organ, and other factors relating to his healthcare. In this hearing, we’ve been told that we will hear oral evidence from six medical professionals with various backgrounds relating to William’s condition. More details will follow as the case continues.
Witness #1 Treating Consultant Paediatric Nephrologist
A few minutes passed while we waited for Dr A, William’s Consultant Paediatric Nephrologist to be admitted to the virtual court room. As is standard practice when giving evidence in court he was first asked to provide a court affirmation and adopt his written statement.
What has Dr X helped us understand about the case?
- William requires a kidney transplant to survive more than another 2-3 years.
- Transplants are complicated operations and the main aim after the surgery is making sure that the new organ – in this case a kidney – stands the best chance of surviving and staying ‘healthy’. [Transplantable organs are a scarce resource and due to this it’s important to ensure even before the transplant that the surgery will be a success.]
- When considering whether a transplant is in William’s best interests, we need to look at the care William will need to make sure that the transplant is successful. This point is where William’s case becomes tricky and due to this a lot of time was spent today exploring the various outcomes and what would be needed to ensure a successful transplant.
- The main concern with William is that his rare condition might recur in his new kidney. Usually, if this occurs the doctors will administer a treatment called plasma exchange to try and save the kidney. Plasma exchange can be compared to dialysis – the patient is attached to a machine and their blood is filtered to remove the plasma component of their blood. Like dialysis, this procedure requires a patient to be attached to the machine for 6-8 hours a day – a situation that might be difficult for William to endure but not impossible.
- After the surgery, William will require a number of ‘lines’ (a haemodialysis line, a catheter, and wound drains). These lines all have different functions, for instance Dr X explained that the catheter will be used to check the ‘communication’ between the ureter and the new kidney. Collectively, all these lines will be used to make sure that the new kidney is not put at risk.
- Because it might be difficult for William to endure the treatments that could potentially be needed to make sure that his transplant is successful, the Trust is recommending that he should be sedated and ventilated after the transplant.
- The period of sedation and ventilation is dependent on how William’s body reacts to the transplant and what treatment he requires. It’s estimated at anything from seven days to six weeks.
- Throughout, Dr X stressed that William has a rare disease, this means that research is difficult to undertake and subsequently research data is limited. As Dr A put it: “Because it’s a rare disease, people can’t do large trials and the literature is hamstrung somewhat by the small number of cases”.
- The treatment regime being proposed for William would be unlike anything the hospital had attempted previously, making it hard to predict its likely outcome.
Under cross-examination by Victoria Butler-Cole QC, some points that were addressed were:
1) whether William could receive post-transplant treatment from home (for example, the plasma exchange)
2) whether all measures were taken to support William in having a successful transplant (for example, providing a full-time carer in case William were to interfere with ‘the lines’.
3) whether a possible cause of one of William’s lines being displaced previously could have been due to an inappropriate restraint by hospital security guards in December 2021 (“quite a shocking incident”, according to Dr A)
The effect of this questioning by Victoria Butler Cole QC, was to raise doubts about the extent to which William would actually interfere with lines (because it seems that there is actually limited evidence that he has done so in the past) and whether the Trust’s best interest determination truly takes into account of all possible reasonable adjustments that could be used to help William tolerate the treatment and its aftermath.
Ms Sutton started her cross-examination by checking that what was before the court involved “very stark comparables”, in that “…If he (William) had a transplant without disease recurrence, he’d live into his 60s…the comparable that we’re looking at is living into his 60’s as opposed to being surprised if he lived for another three years…these are very stark comparables that we’re looking at in terms of the 17 year-old’s life expectancy…”.
Under cross-examination Dr A confirmed that “but for his mental health issues the Trust would agree that kidney transplant is in his best interests”. The Trust, said Dr A, has previous experience of kidney transplants for children with autism and ADHD, but William is “at the far end of the spectrum”. There were also discussions about whether William’s past reaction to treatment could be used an indicator for how he’d act in the future, and it was emphasised that since December 2021 there has been a significant improvement in the way he reacted to treatment. Dr A felt that this change was because William had become familiar with his treatment and routine. This same familiarity and routine could not necessarily be guaranteed when it came to the stage of offering William a transplant. It was highlighted that the use of living donor might leave more room for proper planning and getting William familiarised with his treatment
The hearing came to an end with a re-examination from Ms Mulholand. She asked Dr A a hypothetical question about how he would advise parents about the risks of a transplant if their child did not have William’s behavioural issues and had a disease recurrence under circumstances where plasma exchange could not be offered. Dr A replied that ‘treating anybody…without being able to offer plasma exchange would not be a sensible approach and would not be supported by our peers…it would not be a wise decision’ The re-examination also gave Dr X the opportunity to raise his concerns that William might be distressed by the situation he could find himself in after his transplant – he might wake up in a recovery room with alarms going off, surrounded by other children recovering and faced with staff he had never met before. This is a situation that would be difficult for anyone but even more so for William who according to Dr A could try to get rid of the lines – an act that would be detrimental for the success of his transplant.
After the re-examination, the hearing was adjourned to provide Mrs Justice Arbuthnot with an opportunity to meet William who (according to the Official Solicitor) “very much wants to meet her Ladyship”.
The hearing will resume on Tuesday, 1 March at 10:30.
Day 2: Oral evidence from a paediatric nephrologist and two intensivists
My start to the second day of William’s hearing was a bit rushed. I received an email from Celia Kitzinger (sent 10.13am) stating that she’d been informed by the judge’s clerk that the hearing would start 15 minutes earlier than listed – so the new start-time was 10:15am. I joined a few minutes late and must admit that I was a bit concerned about disturbing the legal proceedings. Luckily, my MS Teams screen soon changed from ‘waiting in the lobby’ to the virtual courtroom and I quickly realised that I hadn’t missed any of the substance of the hearing as the Court was in the process of affirming the first expert witness. (I wondered if I’d missed the judge’s summary of her meeting with William the evening before, but other observers who’d attended from 10.15am said that – unusually – no report had been given publicly to the court.)
Today’s hearing revolved around the oral evidence of three key professionals, Dr Saleem, Dr Z, and Dr Danbury. It was an intense day of observation, lasting close to five hours with a lot of discussion of William’s clinical condition and explanations of the treatment that William might require as part of his post-transplant care, and what adaptations could be made to those treatments to balance care of the kidney with holistic care for William and his psychological health, and what the cost of omitting or curtailing some treatments might be.
Nobody watching this hearing could doubt the intense scrutiny being given to how to act in William’s best interests, with a complex set of facts (some disputed) about a rare disease in relation to which there’s limited research evidence, and some possible treatment regimes that have never before been tried.
With kidney transplantation, doing the transplant itself is only one part of the treatment:
it’s also necessary to make sure that the kidney is taken care of afterwards. The witnesses are helping the Court to understand what would be necessary to ‘take care’ of William’s transplanted kidney, and whether or not, and how, standard transplantation treatment procedures could be adapted to help William tolerate what is, for anyone, an onerous procedure.
There were a lot of references to the “Gold Standard” treatments that the Trust wanted for William in order to ensure the best possible transplantation outcome. The ‘Gold Standard’ was contrasted with variations/adjustments/adaptations that might impair the likelihood of the kidney transplant being a success, but would effectively help get William through the experience.
Some of these adaptations were: sedating and ventilating William so that he’s ‘out of it’ for a period of time after surgery (when an onerous treatment called ‘plasma exchange’ is likely to be needed); providing intensive support from carers and family who can help him to cope; withdrawing steroids early (to avoid behavioural side effects) and using the TWIST protocol. Doctors were asked about the risks and benefits of each option. There was some difficulty in answering questions where certain options had simply never been tried before.
Because this is an extremely complex clinical case (a fact acknowledged so far by all witnesses) I will only be writing about the parts of the evidence that stood out for me. A more detailed live Twitter thread by George Julian can be read (starting with Day 2).
Witness 2: Dr Moin Saleem (Professor of Paediatric Renal Medicine)
Dr Saleem, a Professor of Paediatric Renal Medicine) is the first expert witness (as opposed to treating clinician) that we’ve heard from in this hearing.
Within the first few minutes of his statement, we’re reminded of the unique nature of this case and why it has reached the Court of Protection.
Emma Sutton (counsel for William via his litigation friend the Official Solicitor) said:
“you say in your report that you’ve managed several patients on dialysis with difficult behavioural problems but not with the degree of severity of ADHD and the aggressive behaviour…is it fair to say that treatment planning for William is particularly complex because of the LD, ASD and ADHD”.
He said yes, he agrees with that.
“If he was a child who didn’t have these added complications, we’d, as a part of standard procedure, be working up to renal transplant” he said, There are always risks associated with transplantation but (without the LD, ASD and ADHD) Dr Saleem indicated that he’d expect “on balance, a good long term outcome”.
The overarching question in this case is whether that can be achieved for William.
Dr Saleem’s account of the value of the TWIST protocol (hopefully to increase the likelihood that William’s transplant would be successful) quickly lost me and I was relieved to realise that I was not the only one drowning in medical jargon when Ms Sutton reminded Dr Saleem (not for the first time!) to slow down a bit ‘please wait, I’m not able to get any of this down. It’s going realty quickly, and we’re not clinicians.’.
In yesterday’s hearing, it became clear that in William’s case we need to keep in mind that 1) his rare condition might recur in the new kidney (putting the safety of the kidney at risk) and 2) if this does happen the recommended treatment is plasma exchange (according to the Trust this will most likely need to be done by sedating and ventilating William).
Ms Victoria Butler Cole (counsel for William’mother) asked about the chance of the transplant being successful if William was not able to tolerate plasma exchange. The doctor said “it’s really hard to say because we’ve never tried it”. When asked to entertain the hypothetical possibility that “no way he’ll make the plasma exchange, but let’s do the transplant anyway and try other treatments” he said, “it wouldn’t be futile but I would be putting a finger in the air to give you a figure”.
Additionally, “if he needs haemodialysis post-operatively and he can’t tolerate it, it’s potentially a life-threatening situation. He would absolutely have to have a minimum level of haemodialysis to keep him alive”
Dr Saleem described the plasma exchange as a ‘gold standard treatment’ and also confirmed that ‘no responsible nephrologist would withhold plasma exchange’ . This ties into the Trust’s position that ‘the transplant should have the best possible chance of success.
“The Trust feels – or at least their nephrology department feel very strongly (and there may be a tension here between nephrology and the intensivist) – that… it would be wrong to deprive William of plasma exchange as the standard only proven treatment and in fact that would be treating him differently from his peers.”
One thing that really became clear during the re-examination by Ms Mulholland (counsel for the Trust) was that the Trust and the Official Solicitor, as well as his mother had put a huge amount of work into making sure that every possible treatment plan has been considered for William: ‘the Court looks at this matter as creatively as it possibly can to help William’.
Witness 3: Dr Z (Consultant in Paediatric Intensive Care)
Shortly before lunch, Dr Z a Consultant in Paediatric Intensive Care joined the court for his oral evidence. Most of his evidence was centred around giving the Court a better idea of what could be expected if William had to be sedated and ventilated after his transplant – in particular the risk of psychiatric harm to William.
I found it useful that Dr Z provided an explanation of the role of an intensivist in William’s case. He said that ‘as an intensivist our job is to facilitate the treatment recommended by the specialist teams. I’m reliant on the nephrology teams and their wider multidisciplinary team to predict and explain the level of intervention and the various lines and tubes that will be required to facilitate William’s treatment’.
The crux of his evidence was captured for me when Dr Z said:
“That’s a really key issue coming at this from the perspective of a critical care doctor…. Almost always the treatments that we provide are in an emergency situation and there is a clear risk / benefit outcome in favour of undergoing intensive care treatment. This is a completely different scenario where you are looking at a very unusual situation of someone being intubated and ventilated for a really prolonged period, much more than what would usually be encountered. The reason it is difficult is because we know that being ventilated in intensive care is dangerous and harmful. It’s looking at a balance of risk and benefit across the whole piece. Clearly a human can be ventilated almost indefinitely but you will cause considerably harm to them during that episode.”
During Ms Cole-Butler’s cross-examination she returned to the harm that William might be subjected to and stated ‘…because you’re helpfully setting out all the bad things that could happen, we come away with this view that intensive care is full of extremely risky awful things and we can lose perspective that, yes, it is intensive treatment and there are risks but often there are risks that are worth taking…”. She continued to outline the different scenarios would need to be considered, and stated that for William’s mother, even if the psychiatric harm did lead to a significant reduction in William’s quality of life, this reduced quality of life would be better than William dying.
Dr Z’s response to this was difficult to listen to and truly made me realise why it is so important for the court to fully understand the consequences of sedating and ventilating William. With a truly empathetic expression, he said: “I would not want to reduce the value of her [the mother’s] opinion at all, but we just come from a different standpoint where I have been faced with patients who have passed through intensive care who have described it as being like ‘torture’ and asking why we ever put them through it…and that is inevitably going to colour my opinion of the costs and the burden of intensive care leading into the future. It’s really hard to appreciate those if you haven’t been in the situation yourself.”
Witness 4: Dr Danbury (Consultant Intensive Care Physician)
The last witness we heard from for the day was Dr Danbury, a Consultant Intensive Care Physician. Right from the start it was clear that Dr Danbury also regarded William’s case as a complex one.
Ms Sutton referred to Dr Danbury’s expert report, saying “…you confirmed that you have never ventilated a patient on ICU electively for six weeks or you haven’t even heard of an adult receiving elective ventilation for two weeks”.
Dr Danbury confirmed that he would not recommend elective ventilation for six weeks but he had changed his view on whether two weeks of ventilation would be in William’s best interests after hearing the evidence by Dr Saleem and Dr Z: “if the Court decides that it is in William’s best interests to receive elective ventilation, I can see that a period for up two weeks…might be in his interests, but I struggle to go further than that and it would be very much a maximum.”
The much-discussed risk of psychiatric harm (as highlighted by Dr Z) was a risk that Dr Danbury did not underplay – especially if William is subjected to a long period of elective ventilation. He spoke about the factors (medication and previous history of renal replacement therapy) that added to William’s high risk of delirium as well as other psychological risk such as Post Traumatic Stress Disorder (or Post Intensive Care Syndrome).
From his statement it once again became clear how finely balanced William’s case is: ‘…from a strictly medical point of view I think it’s justifiable [the risks] but if you take things in a holistic perspective, it might not be. I’m glad that’s not my decision…’
At the end of this second day of the hearing, the court was told that on the following day William’s mother, Amy, would like to give a statement to the court. There will also be oral evidence from a consultant psychiatrist and consultant clinical psychologist.The hearing will resume on Wednesday, 2 March at 10:30am (unless otherwise notified: it might be wise to be ready to join from 10.00am just in case of an early start).
Day 3: Evidence from treating psychiatrist and expert psychologist – and a statement from William’s mother
This morning, I joined the MS Teams virtual court room to observe the third day of William’s hearing. There were no hiccups and the hearing started promptly at 10:30am.
Today the court heard more oral evidence and after hearing evidence from so many health care professionals over last two days, I feel I have a much better understanding of the clinical side of William’s case.
Terms like ‘disease recurrence’, ‘elective ventilation’ and ‘plasma exchange’ are no longer words from another language that leave me puzzled. This is largely due to not only the clear way in which the key professionals have provided their evidence, but also because of the legal counsels’ comprehensive questioning to ensure that the Court is provided with a holistic view of William’s condition and possible future treatment.
This third day of the hearing focused on the oral evidence of Dr Y (William’s treating psychiatrist) and Dr Carnaby, a psychologist appointed by the court with expertise in learning disabilities and autism. Together they helped the Court to understand more about the psychological and psychiatric aspects of William’s situation.
Their evidence was followed by a statement from William’s mother, Amy who once again reminded us that at the heart of this matter is William: she described him as ‘very active, loves golf, any activity he can do really, any job – if anybody has any jobs, he’ll do it. He just loves being busy. He’s just full of life. He’s full of energy. He’s such a beautiful boy – beautiful inside and out’. As yesterday, my post is by no means a full reflection of everything that happened in court today. I’ve rather chosen to focus on the parts of the evidence that stood out for me. There a brilliant, detailed comprehensive Twitter thread by George Julian here:
Witness 5: Dr Y – Treating Consultant Psychiatrist
Dr Y, a Consultant Psychiatrist who works in the child and adolescent mental health services was the first witness to join the court today to give oral evidence.
The evidence from Dr Y revolved around the following aspects of William’s treatment plan (not in this order).
1) whether it was in William’s best interests to receive a transplant.
2) the likelihood of William developing a psychiatric injury if he is sedated and ventilated post-transplant.
3) Whether William had been offered enough support from the Trust to comply with his treatment.
4) The mental impact on William if a) he received a transplant, but the treatment was unsuccessful or b) he did not receive a transplant because it was decided that it was not in his best interests.
5) Factors that counted in William’s favour to receive a transplant.
- Whether it’s in William’s best interests to receive a kidney transplant?
Writing this now, after the hearing I can only say that it was a bit of a “oh wow” moment when Ms. Butler-Cole QC asked Dr Y at the end of her cross-examination whether a renal transplant was in William’s best interests and Dr Y responded simply with: “Yes, I think it’s probably is in his best interests”.
In re-examination, Ms Mulholland asked Dr Y whether she based her opinion that a transplant was in William’s best interests on a psychiatric perspective or on nephrological aspects. Dr Y responded: “It factors in the nephrological component…in my view it would be in William’s best interests to have a transplant and were he to have one it would be in his best interests for him to have optimal treatment to ensure that that transplant was successful – because that will not only be a better outcome for his physical health, but also, as you asked me previously, there would not be the impact of having not only having gone through a transplant but it not being successful, which would have a significant detrimental effect”. It was also confirmed that in reaching her assessment, Dr Y did include the 50/50 chance of disease recurrence in the new kidney.
2. Psychiatric Injury
When asked by Ms. Mulholland what the likelihood was that William would incur psychiatric injury if he were sedated and ventilated after the transplant surgery, Dr Y responded:
“I think it’s more likely than not. The risks of, for example, developing PTSD post-treatment on PICU is anywhere between 35%-80%. That risk is increased in children who have neurodevelopmental difficulties…so the risks are likely to be on the higher side for William”,
Dr Y also explained why there is a higher incidence in children and young people with neurodevelopmental difficulties.
“…Reason for that is thought to be, for example in ASD the sensory overload in that environment where children have sensory processing difficulties…it’s also about the intrinsic ability to process and understand events and memories post-PICU. You can see how the two interplay. The way in which people recover from psychological trauma is to understand and process experience and memories. That requires a degree of flexible thinking and abstract thinking. You can understand that is difficult for someone who has ASD…”
Apart from PTSD, Dr Y also told the Court that William could also potentially suffer from a range of other psychiatric injuries: depression, anxiety, delusional memories, nightmares, panic attacks, flashbacks, low mood, lack of motivation, sleeping problems and general lack of enjoyment. Although it was difficult to predict precisely how these conditions would affect William, and their longevity, Dr Y’s evidence can be summarised as follows:
- PTSD and other psychological injuries could resolve or get better in the first couple of years.
- Psychotropic medications could be used to assist William in his recovery. But she emphasised that William is ‘particularly sensitive’ to these medications and does not always have a typical response.
Based on the evidence presented by Dr Y, Ms. Sutton asked during cross-examination: “is that a risk worth taking if it provides him the opportunity of having the renal transplant”. Dr Y replied with a single “yes”.
3. Has William been offered enough support?
At the start of her cross-examination, Ms. Butler-Cole QC (representing William’s mother) stated that Dr Y was the first witness the Court had heard from who’d actually met William. Dr Y described herself as not being a ‘regular face’ and said that she only met William on a few occasions – during capacity assessments and when there were difficulties on the ward etc.
Ms. Butler-Cole QC returned to Dr Y’s earlier statement where she explicitly stated that it was a ‘team effort’ to care for William, and that team included William and his family. Ms. Butler Cole QC questioned whether his mother had been invited by Dr Y or the ‘team’ to draw up plans for how William should be treated in hospital.
To this, Dr Y responded: “My understanding is that Amy [William’s mother] has spoken to and sees the focused-support team. We’ve commissioned a team specifically to meet the needs of young people on the ward. They are based around the corner from the dialysis unit and have daily interactions with William and the staff supporting him”.
Referring back to the records, Ms Butler-Cole QC said it seemed as if the team had only been involved since December 2021.
“Uhm…they have been involved prior to that, but you are probably correct, it’s probably more so since then…but they have been involved prior to that to help us draw up the psycho-education and information packs for William, for example when doing the capacity assessments”.
Familiar carers who know William are a crucial part of ensuring that William gets the best possible care, tailored according to his needs. For instance, we heard from Ms. Butler-Cole QC of words that were triggers for William: calling him ‘Will’, rather than ‘William’, and referring to ‘dialysis’, rather than ‘therapy’. The level of support he receives is also key to William shows a tendency to ‘pull out’ or ‘fiddle’ with his lines and whether this past behaviour should be seen as indicative of how William would act if he received a transplant (with the necessary and adequate support).
This also raises the issue of whether staff involved with William’s care are adequately trained. Ms.Butler-Cole QC questioned the witness about a few examples which seemed to indicate a problem. I will not go into detail, but check out the live tweets by George Julian.
Then there was the incident with the security guards in December 2021. “The previous Friday, one of the security guards told William to ask for him because they have a good relationship. That Monday when they arrived, that security guard wasn’t on shift which disappointed William and he became very unsettled.” Ms.Butler-Cole QC pointed out that this was a departure from the PBS (Positive Behaviour Support) plan: William shouldn’t be told something will happen and then it doesn’t.
The next deviation from the plan was that one of the nursing staff told William that dialysis would take five hours rather than four hours.
His mother’s account of the incident (as reported by Ms Butler Cole QC) continued, “William then hit out at a carer and a member of nursing staff, so three security guards attended the ward, and he was then taken off the machine. Security suggested that he restarted and then have a long walk after that”.
William agreed to this and was told that it would take five minutes to be reconnected to the dialysis machine, but this then took 45 minutes. As pointed out by Ms Butler-Cole QC – this was another obvious trigger for William.
What followed is captured by George Julian (TBC is Ms Butler Cole QC: WV is William Verden):
Ms Butler-Cole QC concluded, ‘We can see with the benefit of hindsight all the things that went wrong that day and ultimately it culminated in a security guard physically restraining William and that’s not right and shouldn’t happen should it.” . It was confirmed by Dr Y that this behaviour would only be justified if there is an ‘immediate risk’ and that the correct approach would rather be “to follow William at a distance to ensure his safety and allow him to calm down”.
When this incident was later brought up during Ms Sutton’s cross-examination of Dr Y, I was relieved to hear that the Trust had already taken steps to involve the security personnel in training to be better equipped to deal with William.
4. Pathways and mental impact on William
Two different scenarios were addressed and their impact on William’s mental health considered: first that a decision is made that a kidney transplant is not in William’s best interests; second that it’s decided it is in his best interests to have a transplant, but it turns out to be unsuccessful.
A decision not to attempt a transplant would be ‘tricky’. Social stories based on a kidney transplant have been used with William since July 2021 and William has developed an understanding of what a transplant would mean for him. Dr Y summarised it as “He knows having a transplant means no more dialysis and he wouldn’t have to come to hospital all time”. Ms. Butler-Cole QC asked Dr Y during cross-examination what the impact would be on William if he was told that he would in fact not receive a transplant. Dr Y explained that it would ‘undoubtedly be very upsetting for him’ and that it might have an impact on his compliance with dialysis treatment.
In her re-examination, Ms Mulholland raised the question of how William would respond if he had the transplant, but it was unsuccessful. Dr Y replied: “That would have a huge impact on William. He does not have an understanding of that concept. He understands that a transplant would mean no more dialysis, no more line but… if the transplant does not work and dialysis continues it will be a huge loss for him…especially having gone through a traumatic process…”.
5. Factors in favour of a transplant
During the cross examination, Dr Y confirmed that William understood that he would die if he did not comply with his dialysis treatment. Ms. Butler-Cole QC asked: “it’s more than parroting back, he is understanding from his behaviour and he is putting two to two together, isn’t he?”
To answer this, Dr Y spoke about William’s understanding of death.: “When you have in-depth discussion with William…his understanding of time is quite impaired…so his concept of death is that it’s not a good thing. But his concept of death wouldn’t be what your concept, or my concept of death would be…He understands it’s not a good thing and not something that he wants because he wants to carry on doing the things that he likes to do…”
Ms. Sutton cross-examined Dr Y about the work that would be needed to prepare William for a transplant. This involved (said Dr Y):
- Part 1: Social stories to help William understand his treatment plan. These stories will focus on haemodialysis at home, the transplant, and treatment for disease recurrence.
- Part 2: William will meet the clinical team and support staff.
- Part 3: Mock lines will be placed to ensure that William knows what to expect post-transplant.
- Part 4: Using a 3D model to help William understand the transplant process.
- Part 5: A pre-packed hospital bag (Dr Y described it as an ‘anchor’ to take away some element of surprise)
- Part 6: Update the PBS plan to take into account likely post-operative risks
Witness 6: Dr Steve Carnaby (Consultant Clinical Psychologist)
Dr Steve Carnaby, a Consultant Psychologist, was the last witness called to provide evidence. I’ve grown oddly accustomed to seeing witnesses join remotely so it took me a moment to get used to seeing a witness in the court building.
Ms. Sutton opened the questioning, which briefly covered capacity before focusing on best interests.
Dr Carnaby confirmed that in his view, both in his written report and now having listened to the updated evidence and heard from Dr Y this morning, William lacks capacity to make his own decision about whether or not to have a kidney transplant.
On best interests, Ms Sutton focused on the written evidence submitted by Dr Carnaby that, with reasonable adjustments (including the social story, mock lines, PICS visit etc previously outlined by Dr Y), William could be supported to get through the experience of transplantation and its aftermath with minimal need for sedation and ventilation (and the risks associated with that).
Summarising Dr Carnaby’s position, Ms Sutton said:
“From a behavioural perspective it is your opinion that if it were possible to reduce post-surgery sedation to the absolute minimum so as to reduce the risk and impact… a transplant for William could be considered on the back of a highly intensive experimental simulation training programme developed for him…”
Dr Carnaby’s position – on the basis of having observed William while he was receiving dialysis, as well as meeting him in person, and discussing his situation with his family and treating professionals – remained that, with the right kind of preparatory work, post-surgery sedation could be reduced to a minimum.
Counsel for William’s mother said that “clearly the purpose of this hearing isn’t to cast aspersions, but Mrs McLennan’s case is there are a number of things that weren’t done which could make things better for William”.
Given the Trust’s position is that post-surgery sedation and ventilation will be essential, it’s not surprising that Ms Butler Cole QC, picked up this matter in her cross-examination. With support to “make things better for William”, could sedation and ventilation be minimised? Dr Carnaby thought it could and accepted that it would be important to have William’s regular carers with him in hospital, “people he feels safe with, who he trusts, who understand him and have a good understanding of autism”.
In particular, Dr Carnaby focused on the need for autism-sensitive and “William-specific” training for anyone brought in to care for William:
Counsel for the Trust challenged the idea that William might not require post-operative sedation and ventilation.
Ms. Mulholland said: “The position of all the team, apart from you, is that post-operative sedation and ventilation is essential to keeping William safe, keeping his graft safe… In light of all of that do you maintain your view that post-operative sedation and ventilation is not necessary?” Dr Carnaby replied: “I think my comment was, I defer to the experts”.
Even when questioned about William’s ability to deal with an unexpected situation such as deceased donor donation, when William might be called into hospital in the middle of the night, with all the stress that would occasion, Dr Carnaby emphasised (while deferring to experts) the value of supportive interventions that could help William: “A social story could make it something to look forward to, something exciting. So, yes, it might happen quickly, but it may be another area of life where surprises can be built in. It’s not on the timetable but it’s a good surprise.”
Dr Carnaby repeatedly emphasised that William’s clinical and support team would play an important role in the success of his treatment. For example, “what’s been said about risk of trauma, PTSD in particular, I think that risk can to an extent be mitigated by thinking carefully about who is supporting him at the time. Everything is based upon ensuring that the core team that is trained and consistent are able to give him what he needs…”. The risk of William pulling at his lines could be mitigated (he said) if a team of carers could be provided to look after William around the clock.
When asked about the mental health consequences for William of not being offered a transplant, he said:
“William has a very black and white way of seeing things. Meeting him, my sense was he believes that he has a transplant or he will die. I think he will struggle with another way with no clear outcome… In terms of impact on his mental health, the risk is that he’ll no longer want to comply with treatment, I think there would need to be a complete revisiting with him about sessions and end goal. He needs things to be concrete. My concern for him is that he’ll give up. He won’t see the point of complying (with the dialysis regime)…”
And if the transplant was unsuccessful?
“I think disappointment obviously, sadness and loss… I think it will rest on how it’s framed to him…how the outcome is explained to him. There’s something around everyone trying to give him the best chance. My view would be he could move more towards accepting something that’s gone wrong, when something’s been tried as opposed to being stopped from doing something…”
William’s mother, Amy McLennan’s, Statement
The day ended with William’s mother, Amy, addressing the Court. For a moment, the Court was able to view William through her eyes – a young person who is ‘open to life and everything it has to offer’ and ‘deserves a chance’.
The evidence presented over the last three days leaves no doubt that Amy is a dedicated mother, who is and will continue to be fully involved in William’s care. But, it’s towards the end of her statement that it becomes clear just how well Amy grasps William’s future prospects “I understand everybody’s risk, but I think William’s voice needs to be heard… and he, I think deserves a transplant… I’m not under any illusion that it might not work but he just deserves a chance”.
At the end of day three, I found myself feeling a bit disappointed.
I am by no means a medical expert but I was hoping that the evidence would address what life with a transplant would be like for William. The evidence focused predominantly on preparing William for the transplant procedure and making sure that post-transplant care (in hospital) is adequate and possible, but did not really address what his life would be like afterwards, if it’s successful.
Throughout the hearing, evidence was provided that William finds disruptions to his routine “very anxiety-provoking” (Dr. Y) – but life (as far as I understand) with transplant involves a great deal of change and potential disruption to routine. It’s filled with uncertainty that is often beyond the organ recipient’s control and often involves hospital admissions for treatment due to the transplant (for instance when infections occur). Obviously, this is not a reason to decide that a transplant is not in William’s best interests, but as part of making this best interests decision, it is important to understand what life would be like for William after a successful transplant once he left hospital. The only consideration of this was in relation to PTSD and other psychiatric trauma caused by ICU, and his expected lifespan. But, given the focus on adequate support for William’s in-hospital treatment, it would be my hope that consideration would also be given to similar support once he is discharged.
My next blog will be about the closing submissions in this case on Thursday, 3 March 2020.
Bonnie Venter is a PhD candidate and Research Associate at the Centre for Health, Law and Society situated within the University of Bristol Law School. Her PhD research is based on an empirically informed evaluation of the legal and regulatory framework guiding the living kidney donation pathway in the United Kingdom. She tweets @TheOrganOgress.
Acknowledgements: I am greatly indebted and would like to thank 1) Celia Kitzinger for her endless efforts and time in helping me prepare these blog posts – I could not have done this without her guidance 2) George Julian for her extremely comprehensive live tweets of the hearing and 3) the legal counsel for sharing their position statements with me.
Photo by Richard Catabay on Unsplash
5 thoughts on “Is a kidney transplant in his best interests?”
As someone who has FSGS and has had two failed transplant by the age of 36 I wish this family all the best. It will be tough but if William gets some freedom out of a successful transplant then it’s worth a go. My first lasted 10.5 years and gave me the chance to build a life. I was able to get back to work for the first time in 5 years. I met my now wife, had children, bought a house etc. The transplant was from my mum and I’ll never be able to thank her enough. However, I also know the bad side of a transplant, my second had major complications in surgery and within 6 months the transplant was failing. I am now on my third stint of dialysis and recovering still from my last operation. Physically and mentally I am in pieces and receiving counselling as well as dialysis. FSGS is a horrible disease and I wouldn’t wish for anyone to experience it. I truly hope and pray that all goes well for William and his mother. All the best to them 🙏
I’m very pleased with the outcome of the court hearing. It will be tough as I’m sure everyone knows but this lad is so young. I missed out a lot on what should have been the best part of my life being on dialysis between 18 and 23 and I’ll never get that back but at the same time between 23 and 33 I had the best time. I made a life and competed for my hospital Oxford Churchill in various British Transplant games and then finally the World transplant games in Newcastle just before the transplant failed. My mum will never know how much her second gift of life gave me.