Best interests and kidney transplantation: Closing submissions in the William Verden case

By Bonnie Venter, 7th March 2022

UPDATE: The judgment in this case is now published: Manchester University NHS Foundation Trust v WV [2022] EWCOP 9 (08 March 2022). Latest news: “Autistic kidney-row teen’s transplant ‘a success’

This post is about the final day of the hearing concerning whether it is in William Verden’s best interests to have a kidney transplant.  This day (Thursday, 3 March 2022) was devoted to closing submissions. 

If you have been reading my previous blog posts on the case, you’ll know there was one that introduced the case (here), and another (here) covering Days 1-3 of the hearing.   

Back at the beginning of the hearing, I compared the experience of observing in court to gazing through a kaleidoscope.  I started off with a blurry image of what William’s case entailed – especially given conflicting facts presented by the media. The image has gradually become clearer as I’ve listened to the oral evidence and watched the brilliant examination by the legal counsel.

 Today’s closing submissions brought me one step closer to finally seeing the full picture. 

There’s one final turn of the kaleidoscope before the full image is revealed: that will come on Tuesday 8 March 2022 when Mrs Justice Arbuthnot hands down her judgment. 

As a brief reminder, the person at the centre of the case is William Verden,  a 17-year-old who has a rare kidney condition (steroid resistant nephrotic syndrome) which has led to end-stage-renal-failure.  Without a kidney transplant, William will die within about a year or so.  

William also has diagnoses of moderate to severe learning disabilities, autism, and ADHD with accompanying behavioural disturbances. All parties agree that William does not have the capacity to make his own decision about a kidney transplant. It’s also agreed that the combination of his rare kidney condition and his other diagnoses mean that adjustments would need to be made, if transplantation were to be successful.  Some of these adjustments carry quite serious risks: for example, being sedated and ventilated for days or weeks (which is likely the only way he would be able to tolerate the treatment required for disease recurrence immediately post-operatively) is highly likely to cause psychological harm (including Post Intensive Care Syndrome), which could last for years.  There’s also an estimated 50:50 chance of the kidney transplant failing.

 In line with section 4 of the Mental Capacity Act, the Court of Protection has been asked to consider whether a kidney transplant is in William’s best interests. 

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.

Over the course of the previous 3 days, the parties have heard extensive evidence from a range of health professionals.  On this last day, they presented their closing submissions – final speeches from each of the parties summarising their position after hearing the evidence.  

I will detail the closing position taken by each party but in summary:

  • The applicant Trust claimed the same position as in the position statement they submitted to the court at the outset (i.e.  it’s “finely balanced” and they can’t positively say that transplantation is in William’s best interests and are asking the court to decide).
  • The mother’s position remains unchanged (it’s in William’s best interests to have a transplant). 
  • The litigation friend for William, the Official Solicitor (who reserved their decision at the beginning of the hearing) came down strongly after hearing the evidence in favour of transplantation.   

Here’s a more detailed account.

  1. Counsel for the Applicant Trust (Helen Mulholland

The Trust’s position at the outset of the hearing was that the decision was ‘finely balanced’ such that  “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.”  The Trust therefore asked the Court to decide whether a kidney transplant is in William’s best interests. 

In her closing submission,  Ms Mullholland, on behalf of the Trust continued to refer to it as a “finely balanced” case, and took essentially the same position.

“The Trust as you know looked at transplant in great detail with its own nephrologists, intensivists and psychiatrist, took second and third opinions, and approached the hospital’s ethics committee. Those opinions were not in favour of transplant.  But at the time of making the application to court. The trust acknowledges this is extremely finely balanced and there are compelling arguments both ways…Trust cannot agree to transplant and asks the court to make that decision on William’s behalf”

But, even under these circumstances the Trust acknowledged the gravity of their position: “It is a stark choice, it’s so balanced because even a successful outcome for William will have severe implications for him. He will have…a severe psychiatric injury for several years…The Trust has reservations, but it quite sees that the alternative is equally stark for William.” 

Ms Mulholland expressed positive views about all of those involved in this case. Describing William’s mother, Amy McLennan as “the person who knows him better than anyone”, she said: “One cannot fail to be moved by her evidence…it was compelling evidence. On behalf of the Trust, I should like to pay credit to her for her care that she has given and continues to give to William”. She recognised the doctors who’d given evidence as “conscientious, compassionate doctors and they seek the right outcome for William”, and acknowledged the incredibly hard work from both the Trust and William’s family in trying to reach the right decision” but “William has perhaps worked the hardest of all”.

From a clinical perspective, one of the features that contributes to the complexity of William’s case is that his rare kidney condition might recur in his new kidney – the likelihood of this happening was described by Ms Mulholland as a 50/50 chance much like “the toss of a coin”. This success rate is based on the evidence that was presented by Prof Saleem on day 2 of the hearing (the Trust’s own estimation of the risk was higher (up to 100% in their position statement).

She also referred to the serious risk detailed in oral evidence that William would suffer psychiatric injury, including post-traumatic stress disorder for several years.  She quoted an earlier expert who’d said other children have referred to intensive care treatment as “torture”.

Ms. Mulholland presented the Court with two possible outcomes for William. The first, is one of no diseases recurrence which was described as an outcome that “everyone would hope for”.  The second would be disease recurrence. If this were to happen William would require treatment by means of plasma exchange and high doses of steroids. 

Over the course of the last three days, it’s become clear that the provision of the plasma exchange is where the true complexity and difficulty of William’s case lies as it’s been largely agreed that sedation and ventilation will be needed to provide the treatment. This decision is largely based on the clinician’s standpoint that “… if transplant were to take place it should have the very best chance of success for William to do other than that would be to do him a disservice.” 

It’s the effect of this required sedation and ventilation that concerns for the clinicians.

The evidence has developed and crystallised during the course of this hearing. Prior to the hearing the intensivist at least on paper were not in favour of this course of action but they can see that this is a delicate balancing exercise. But that doesn’t eliminate the risks…not only is it clear now that there is likely to be significant psychiatric injury…Dr Carnaby went further than Dr Y and said it’s very likely… there is also the distinct possibility of post intensive care syndrome. The evidence of the intensivists is particular stark. It’s important when making this difficult assessment that we don’t shy away from that. Dr Z speaks of children that come round of such experience and queried why they happened and described them as torture”. 

Ms Mulholland ended like this: 

It’s important in this assessment to bear in mind what success looks like and what failure looks like and this is not a binary assessment. There are many possible outcomes…makes this a very difficult assessment and that’s what leads to the position of the Trust being taken as it is. On the one hand, William could continue with his haemodialysis with his good quality of life but under those circumstances he would likely live for a year or two…difficult to predict. On the other hand, he can have a transplant with a 50% possibility of success and then not require further transplant for potential 15 years. During these years he will be without his dialysis but with an unknown and unquantifiable psychiatric injury.

Counsel for William’s Mother, Amy McLennan (Victoria Butler-Cole QC

From the outset of the hearing, the position of William’s mother has been  that a kidney transplant is in William’s best interests, and none of the evidence during the hearing changed that basic position.

Speaking on behalf of Amy, Ms Butler Cole QC started her closing statement / argument by thanking Arbuthnot, J for the time she’d taken  to not only hear the evidence but also to meet with William. 

Ms. Butler-Cole QC said  that Amy had found the Trust’s position confusing.  

“…At a point in the Autumn, it was suggested that mediation might be appropriate but that was rejected by the mediator because the views about transplantation were so polarised. It seems now we’re in slightly different territory”

That ‘different territory’ is one in which there’s nobody clearly stating that transplantation is not in William’s best interests.  Either they say that it is, or  “at its lowest if I may put it that way, was Dr X, who when asked, by me, “is it your view that it’s not in P’s best interests?” said, “we just want the court to decide”.  This is, as Ms Butler-Cole QC said, “Mr Justice Hayden’s territory” in guidance issues in 2020 (Practice Direction 9E: Applications relating to medical treatment): you must always consider making an application to  court if the decision is “finely balanced’, even if there is no disagreement about what is in P’s best interests.

“We are actually in that territory.  There was no evidence from any of the witnesses that transplantation was not in William’s best interests.” 

So, the burden is on the Court to make a decision that clearly involves serious risks. 

That is something that fortunately for doctors and the family members the court is familiar with. One can see from the cases including cases like Re D , where totally untested stem cell therapy was approved as being in someone’s best interests contrary to medical opinion, probably contrary to Bolam, precisely because the Court’s role in making a best interests decision is not necessarily to make the least risky decision or a not even a sensible decision,  because the person’s wishes and feelings are so critical.” 

She also referred to the case of Wye Valley NHS Trust v B where the Court of Protection decided not to amputate Mr B’s leg even though that meant he would die, because of his strong wish not to undergo amputation.  

And she quoted from a lecture given by Mr Justice Hedley (as he then was) in 2013 to the Mental Health Lawyers Association annual conference.  Hedley J recognised that where risk and danger is involved – such as the risk of psychiatric illness from sedation and ventilation,  and the negative consequences failed transplantation for William, which the Trust express such concern about: 

  “… it is readily understandable that the authorities themselves were not prepared to incur that risk. That is the proper function of the judge … I think we have to be sensitive to the pressures that operate on public bodies but at the same time be willing to assume responsibility for running risks where the general interests of the person concerned seem so to require. … The purpose of the jurisdiction is to enable those who lack capacity to enjoy life to the fullness that is potentially available to them. To live life to the full is always to incur risks. That seems to me a proper approach in regard to those who lack capacity even though it is the judge rather than the person who is incurring and authorising the risk. I do not think we should be afraid of this for in my view it accords with any sensible philosophy of providing for the welfare of those who, through no fault of their own, are restricted in their ability to control their lives.

Amy recognised and appreciated that the Court would be willing to make such a ‘risky decision’ on Williams’ behalf. 

One of the changes resulting from the court hearing was that the evidence had changed – the Oral Evidence was not the same as the written evidence before the court.

For example

Dr X (The Treating Nephrologist) 

Writing Evidence Oral Evidence 
We find it very difficult to support the option of putting him forward for a renal transplant”  (this evidence was based on the basis that William would require sedation and ventilation for 6 weeks) It is a difficult and finely balanced issue and we come to ask the court for their view on it. It would be straightforward for me to say from the point of view of the kidney that he should have plasma exchange and any other treatment but clearly we understand that a long period of sedation and ventilation is not ideal

Dr Z (Consultant in Paediatric Intensive Care) 

Writing Evidence Oral Evidence 
It would not be in William’s best interest to subject him to mechanical ventilation of 2-6 weeks Ms Butler-Cole QC provided a helpful summary of the oral evidence: “He had sedated patients for 5-7 days. The risks were not so great that they shouldn’t be considered at all. The key concern was the possibility of psychiatric or psychological harm…He accepted that there were protective factors for William. William is not critically ill at the moment and most if not all children who are going into ICU are critically ill…That’s a protective factor for William because he will be going into ICU electively, not in a crisis situation with other risk factors that children would have experienced.

Dr Y (Consultant Psychiatrist) 

Writing Evidence Oral Evidence 
Did not express a view on the best-interests- determination.Even with knowing the risks and potential harms Dr Y was of the opinion that the proposed treatment and elective period of sedation and ventilation was in William’s best interests. 

Ms Butler-Cole QC also addressed the weight of the second opinions and documents received from the Ethics Committee. She started off by framing the context of the  second opinion document: “…at the time one of the things the trust was considering was stopping haemodialysis and the first question that was posed was ‘is this vulnerable adolescent suitable to receive a kidney transplant in the meantime his only chance to survival is dialysis”. To this the opinion was that a transplant was William’s best option if ongoing active treatment was pursued. 

An ethical concern was also raised by the Ethics Committee about “offering William a kidney rather than another candidate more likely to maintain transplant kidney function for a longer period.” But, during Dr X’s evidence it was made clear that this concern did not form part of the best-interest process – “this is not about whether someone else deserves a kidney more than William, it’s about whether this is the right course of treatment for William”.

Returning to the question of continuing dialysis, Ms Butler-Cole QC emphasised that at the time the second opinions were requested, the information provided stated that providing haemodialysis was extremely difficult.

…security guards have to sit with him at all times…he can easily hurt himself or staff. Sessions have to be often prematurely stopped resulting in inadequate dialysis…”

This is not the position that William finds himself in at the moment.

Based on this information of the previous situation (before William received adequate support to assist him with his dialysis). The opinion stated: 

I can only envision William lurching from one crisis to another on dialysis. If it’s not line displacement, it may be fluid overload or line sepsis…or just being fed up to sit for another three hours week after week after week.”

Referring to it as a ‘pessimistic view’ Ms Butler-Cole QC reminds the Court that this view of what was going to happen did in fact not occur. 

William has got better and better at tolerating dialysis. There have been fewer and fewer problems and there haven’t been a series of major crises

The second opinion concluded

If William finds it impossibly miserable tolerating the transplant operation and rescue treatment, considering low chances of success embarking on listing for transplantation would be futile

However, the Trust’s case is not that the treatment is futile. 

It’s pointed out by Ms Butler-Cole QC that the analysis does not take into consideration the measures that has been proposed to help William tolerate the sedation and ventilation. 

Ethics Committee Letter 

A letter based on the views of various medical professionals was also presented to the Court which asked them to consider whether it was in William’s best interests to switch to best supportive care and palliation of symptoms. The Committee’s response was that it was a reasonable view to take and also referred to making an application to the Court of Protection if agreement could not be reached about best interests determination. 

It’s disappointing and rather concerning to hear Ms Butler-Cole QC point out that this clinical ethics meeting and discussion took place without involving William’s mother. Reference is made to the case of Great Ormond Street Hospital v MX which stated: “…a lack of involvement by patients and their families is itself an issue of medical ethics and I’m most surprised there is not guidance in place to ensure their involvement and participation…while of course professionals may need to have discussions on their own to exchange frank and professionals views. It cannot be good practice for there to be no prior consultation or participation of the patient or the family” 

Consequently, it was put forward that neither the second opinion or ethics committee letter assisted the Court. 

The crux of William’s case

After discussing the second opinion and ethics committee letter, Ms Butler-Cole QC outlined the important aspects of William’s case. 

  1. The alternative if William is not offered a transplant  

The critical point here, this is treatment that would be offered to someone with William’s condition; if he doesn’t have it, we know what the outcome is – it will be death in a relative short period (likely to be 12 months not two or three years). We have the luxury of considering the risks and the benefits in fine detail but ultimately the balancing exercise is the same that doctors and parents have to make every day when admitting a critically ill child to ICU. It’s a bridge of treatment to help someone recover. It has negative side-effects, but one adopts it because the alternative is much worse.”

  • Organ Transplantation and the Mental Capacity Act 

 “It’s been interesting that none of the experts or professionals appear to have encountered a situation before where organ transplantation has been offered to someone without capacity to make decisions, who also potentially will display challenging behaviour. We don’t know if that is because people in William’s situation aren’t offered transplantation, or whether it’s just to do with the rarity of transplantation as a medical procedure

  • Court authorisation for elective sedation and ventilation 

The issue of elective sedation is not at all novel for the Court of Protection.  It’s frequently authorised by the court.  Ms Butler-Cole QC relied on cases where the Court has authorised sedation and ventilation to allow for procedures to be carried out when the patient doesn’t comply  (e.g. court-authorised caesarean (e.g. C-section and general anaesthesia against her wishes? Capacity and best interests and cancer treatment to which a non-capacitous patient is resistant (she cited NHS Trust v K).

What has the evidence told the Court about the risks to William? 

Prof Saleem’s evidence stated that the risk of recurrence in William’s case was 50% –  Ms Butler-Cole QC asked the Court to proceed on the basis of this evidence as it represented the national basis. She also emphasised that the risk of recurrence did not mean that it was a 50% risk of failure and that the Court should bear in mind that there is the likelihood that the plasma exchange could allow for even the new kidney to function without disease. 

William’s behaviour and the need for sedation and ventilation 

It was put to the Court that William’s mother had reflected significantly on how William’s behaviour might necessitate the need for sedation and ventilation if a plasma exchange is required. Amy’s view is that “with the right support, William’s behaviour is much more manageable than the trust think…” Amy felt that it was a good sign that William had kept his central line in since September 2021 and that his behaviour had improved over the last few months when attending dialysis. The concern was raised that the narrative that was presented that William was a difficult patient to dialyse was based on the opinions of medical professionals who didn’t even meet William. Lastly, William’s mother also felt more hopeful since the indicated focused support team became more involved towards the end of December. Their involvement showed that with a William centred autism-friendly approach he could be assisted to comply with treatment. 

One thing that Amy made clear though is that she did not want William to have a poor quality of life and she was not insisting on treatment at all costs. 

The public appeal for a living kidney donor 

William’s case first caught my attention when I saw the BBC article on the public appeal that had been launched to find William a living kidney donor. At the end of her submission, Ms.Butler-Cole QC returned to this point. She told the Court that William’s mother was ‘extremely moved and grateful’ for the donors who had come forward, but she was concerned about the fact that at least one donor was told that there was an upper age cut limit of 60. This advice does not seem to be in line with the information provided on the NHS Blood and Transplant website. Seeing that during my own empirical research I spoke to living kidney donors in their 70’s I also returned to the NHSBT leaflet on living donation and this clearly states:  “There is no maximum age limit for donation. Donors are assessed on their own health and the suitability of the kidney for the intended recipient. In the UK there have been successful living kidney donations from people more than 80 years of age“.

This is also echoed by the British Transplantation Society’s Guidelines for Living Donor Kidney TransplantationI guess it could be questioned whether an older donor might mean a lower success rate for William, but either way it’s important to have an answer on this matter. It would be unfortunate if members of the public above the age of 60 were led to believe that they could not act as living donors. 

The critical part of this case though is to consider what William wants – what are his wishes and feeling. It’s become undoubtedly clear that he wants a transplant, and that this is a process he has been prepared for since July 2021. Ms Butler-Cole QC stated that it would be ‘cruel’ to now tell William that his transplant was not going ahead. She ended by stating ‘…the only reasonable conclusion the court could reach is that it is in his best interests that transplantation proceeds”.

The Official Solicitor for William (Emma Sutton)

Ms. Sutton presented her closing submission in three parts: 1) an overview of the position; 2) an analysis of how the Court should reach their decision by applying the evidence to the statutory framework; 3) the specific terms of the draft order the court will be invited to make. 

  1. An overview of the position

William’s mother’s confusion regarding the Trust’s position was immediately echoed by Ms. Sutton, when she outlined the evidence presented by Dr X and Dr Z. She referred the Court to the following: 

“…Dr X’s written evidence where it said my staff and the team feel it’s in William’s best interests for haemodialysis to continue, the inevitable consequence of that is if dialysis is to continue, then transplant is not an option put forward by the professionals ” 

“…Equally conclusions of Dr Z, he says ‘in my opinion it would not be in William’s best interests to subject him to a prolonged period of mechanical ventilation for two to six weeks to facilitate a renal transplant’.”  

The Court was referred to the earlier judgement concerning the Reporting Restrictions Order where the position of the trust was that they objected to a transplant for William. Mrs Justice Arbuthnot interjected to express that the Trust’s position here was based on that William would need 4 – 6 weeks of sedation and ventilation and she described it as “a very different picture to what we have here today…”. Ms. Sutton explained “the reason I outline that is that the tenor of the evidence this week makes it easier for the decision to be made because you have no clear evidence pointing againstthe position that it is in William’s best interests to have the kidney transplant”. 

The more difficult decision in the Official Solicitor’s opinion was rather the issue of elective sedation and ventilation – as explained by Ms. Sutton this was a measure that “would not have been provided, but for William’s difficulties”. 

It was concerning (she said) that the key professionals who provided the oral evidence did not necessarily know William well. 

This is not an overt criticism at all of the Trust, but was clear from the oral evidence is that it’s quite unusual for the Trust to call witness who know William well. There was a tendency to paint William as a child who is difficult, and  can’t be managed due to his learning disabilities, ASD and ADHD. Whereas the reality of the situation on the ground when you properly analyse the records is that staff have been able to manage him for a period of two years. That’s significant. If you look at the managing techniques – it was light touch:  it was distraction techniques and it was handholding.”

Elective Ventilation and Sedation 

On the question of elective sedation and ventilation to ensure the success of William’s transplant, Ms. Sutton started by saying that the Official Solicitor was nervous of accepting this course of treatment for William. She used the two scenarios of no disease recurrence and disease recurrence to outline why it might be necessary to sedate and ventilate William. 

In the situation where there was no disease recurrence, the main concern based on Dr X’s evidence was that line joining William’s bladder and new kidney could be pulled out and even though the consequences of pulling out the line would not be fatal, it was still considered as a serious situation. But, even in this situation it was explained by Ms. Sutton that William would be “in a situation he’s never experienced before”. 

The ’unknown’ territory might be more for William if disease recurrence did occur as he would require plasma exchange (10 sessions over 14 days for 2-3 hours) and for the first three days he would be treated with high steroid dosages which is likely to cause verbal and physical aggression (as noted by Prof Saleem). 

Ms. Sutton summarised the situation as follows: 

We say tolerance of such an intensive post-operative plan for any young person would be a huge ask but for William having regard to the learning disability, ASD and ADHD this would be a significant uphill battle and reasonable adjustments need to be made for him” 

Due to this, she stated: “it does lead to the consideration of the post-operative sedation and ventilation….I asked Dr X if it was possible to hold off sedation…his words were that would have ‘missed the boat’. So, that is absolutely out of the question.” 

Based on the evidence, Ms Sutton put forward that the ‘appropriate’ threshold would be 14 days (with the bulk of the risk occurring in the first 48 hours) and allowing 3 to 4 days for disease recurrence. On this point, she also highlighted that the sedation and ventilation would give William the best chance of the transplant being a success and also that it would have no additional risk to the health of William’s kidney. The Official Solicitor felt that it would be in William’s best interests for the Court to authorise this treatment. 

Appropriate Support 

Stepping away from the matter of sedation and ventilation, if disease recurred William would need to be in hospital for approximately six weeks (it was mentioned that there might be room for movement between home and hospital). If this were to happen, Ms. Sutton said that: “William would require continuous care and support to ensure that he is able to tolerate the necessary treatment post-extubation. That may amount to a deprivation of liberty…” Here, the Official Solicitor supported the position that 1) if the hospital could not provide the necessary care it should be commissioned externally and 2) carers known to William should be properly utilised. It was also added that the Clinical Commissioning Group would fund the haemodialysis at home (subject to finding appropriate staff). 

Another issue regarding appropriate staff was the issue of security guards. On this point, Ms. Sutton said, ‘it would be inappropriate for security guards to be part of the future plan unless they have further training and advice’

William’s functioning age  

It was also asked by Ms. Sutton that the reference to William’s functioning as a three-year-old (reproduced in one of the expert witness reports) should be discounted by the Court.  “I don’t know where that came from and it’s just unacceptable…”

  • An analysis of how the Court should reach their decision by evidence to the statutory framework 

In line with S 1(5) and S 4 of the Mental Capacity Act, Ms. Sutton put forward the four key factors that point in favour of William having a kidney transplant. 

FactorSupporting Evidence
The transplant would be prolong William’s life and improve his quality of life. The evidence presented by Prof Saleem clearly indicated that if the transplant was successful William could live for a further 15-20 years. And even in the unfortunate event of disease recurrence William’s life expectancy could still be 7 – 10 years (this should be compared to estimated 12 months if William was only to continue dialysis)
It is William’s wish to have a kidney transplant  The Court heard from William and his mother that he is very focused on the operation and when it would happen. Ms. Sutton also stated: “…from his perspective, it’s reasonable to assume that he would take on the risk of psychological harm, he would take on board the risk of psychiatric harm if it meant that he has a chance to life longer…”
It was also the wishes of the family that William should have a kidney transplant  It was clear from William’s mother ‘s statement that her wishes was that William should receive the transplant. But Ms. Sutton also added: “…having heard from Ms McLennan in evidence, it’s very clear that she has been so respectful to professionals, she’s conducted herself exceptionally in what is in unimaginable position for any parent to be in. William is very lucky to have her as a main support in this case. Her views should be given significant weight…” 
Mitigation of identified risks (duties of the Trust)The Trust needs to provide patient-centred care and make reasonable adjustments.  The Official Solicitor’s submitted: “…it’s apparent that a person-centred care for William would involve a period of sedation and ventilation for the minimum period and the continuous support post-extubation in accordance with his treatment plan.” 

The 7-point plan that was discussed during Day 3 was also outlined by Ms. Sutton and put forward as being a part of the mitigating factors that would assist William and “goes in favour of balance towards a kidney transplant”.

The Negatives? 

Yet, in a balancing exercise, one also has to consider the negatives. The negatives were outline by Ms. Sutton as follows. 

  • Disease recurrence (as submitted by Ms Butler-Cole QC this should be seen as a 50% risk)
  • The risks associated with elective sedation and ventilation. A table was used to outline the risks by comparing the situation according to 7 days, 2 week and 6 weeks of ventilation. Here was a specific focus also on the risks of psychiatric injury as outline by Dr Y during day 3.  This was summarised by Ms. Sutton: “…post 48 hours, it’s more likely than not that William will suffer psychiatric injury – it could be depression, anxiety, PTSD, delusional memories, and it’s likely to last more than a couple of years. Although, it is difficult to predict…it would lessen over time if treated with medication and therap. But significantly, she confirmed…this would be a risk worth taking if it gave William the opportunity to have a kidney transplant…”. Ms. Sutton made it clear that she was not minimising the issue but that it was an unknown. 
  • The second opinion letters. Here Ms. Sutton echoed the  submission of Ms Butler Cole:  the second opinions should be considered but not given significant weight. 

In concluding, Ms. Sutton clearly expressed “a kidney transplant is the first line of treatment for end stage renal disease. But for William’s behavioural issues, the Trust would agree it is in William’s best interests. Disease recurrence of itself is not a reason not to transplant…. Affording William the opportunity of a transplant, as other patient would who do not have disabilities, and which prolongs his life, is the key point in this case. There are very real risk associated with a course of action where there is a likelihood of harm to his mental health. If this sustains his life, it’s a risk worth taking. Affording William, the opportunity to have a kidney transplant is the least worse option if the alternative is premature death – particularly in circumstances where we know he has a full and joyful life.”

Ms. Sutton drew on existing case law to challenge the ‘protection imperative’ – as formulated by Mr Justice Baker in B and D: “People, including a Court or Judge of Court of Protection might be drawn to a course that is more  protective of an adult…. all life involves risks…”. As  Mr Justice Munby (as he was then) is so often quoted as saying (and is indeed quoted by Baker J in B and D: “what good is it making someone safer if it merely makes them miserable? As Ms Sutton put it: “What good is it making William safer if it does not allow him the full opportunity to live a prolonged life which he deserves to have?”.

According to Ms. Sutton there was one factor of ‘magnetic importance’ for the Court and that is the right to life protected by Article 2 of the Human Rights Act.

Finally, Ms. Sutton asked the Court, should the judgment be as she hoped, to urge the Trust  “to remove red tape” and “that all that can possibly done for the transplant to become a reality for William to be done”. 

The judgment is expected on Tuesday 8th March 2022.

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 has blogged about other hearings for the Open Justice Court of Protection Project (e.g. Ethical complexity in a life-sustaining treatment case  and Covid vaccination in the Court of Protection). Bonnie 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.

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