By Bonnie Venter, 28 February 2022
Latest news: “Autistic kidney-row teen’s transplant ‘a success’“
Over the next few days (from 28th February 2022), I’m going to be observing a Court of Protection hearing (remotely) in Liverpool, concerning whether or not a kidney transplant is in the best interests of a 17-year-old called William Verden.
The case is called Manchester University NHS Foundation Trust v William Verden and Amy McLennan[i]. The applicant Trust is providing medical treatment for William. Amy McLennan is William’s mother.
I’m going to be writing a blog at the end of each day of the hearing describing what happened and highlighting significant issues.
My interest in this case stems from my passion and interest in organ donation and transplantation.
Donation and transplantation raise so many ethical questions. Who should be allowed to act as a living donor? Should we allow the use of animal organs as a substitute for human organs? Should we consider all citizens to be potential organ donors upon their death?
I’ve spent most of my academic career engaging with questions about how law and policy can play a part in addressing the ever-increasing gap between the supply and demand of organs.
My research started off somewhat optimistically exploring the suggestion that paying living kidney donors would be the perfect solution. But, after conducting more research, spending time in transplant clinics and observing a few transplants, I realised that I had to adjust my sights slightly and be more realistic about ways to improve the shortage.
Mostly, I learned that, as lawyers, we don’t always consider clinical practice when making policy recommendations and that this often leads to good laws on paper but these laws fall short when applied in a hospital.
This approach led me to pursue my PhD at the University of Bristol where my research looks at the relationship between the law, regulation, and living kidney donors. As part of my research, I’ve been fortunate enough to interview living kidney donors, health care professionals and policy makers to gain a better understanding of how they experience the law.
Living kidney donation is one of the main ways to overcome the organ shortage. Although, it was at first met with some resistance since a healthy person is ‘harmed’ (operated on) to improve the life of another, it has now become a common occurrence. The law in the UK (The Human Tissue Act and its accompanying Regulations) allows for both related and unrelated donations as well as donations from ‘strangers’ which are known as non-directed altruistic donations.
A few weeks ago, I was scrolling through Twitter – a hub of activity for the transplant community. With hashtags like #organdonation, living donors share their insights on the donation process, organ recipients often express their gratitude, and transplant professionals are quick to post and retweet new developments in organ transplantation.
It’s not often that the law becomes an active player in this field, but on the evening of 8th February 2022, tweets were being fired off about a ‘legal battle’ between a mother and the Manchester University NHS Foundation Trust after the trust decided to oppose a kidney transplant for her 17-year-old son. Naturally, I was immediately intrigued and decided to delve into it further.
At first it was difficult to determine the facts of the case and the legal question. Newspaper headlines varied greatly, and the public’s reaction reflected different narratives (most probably based on the discrepancies in the media coverage). This month, BBC News reported: ‘Mum’s search for kidney donor that could save son’s life amid legal row’. In a similar tone a local paper, LancsLivereported ‘‘Mum’s desperate plea to find kidney donor for teenage son before tine runs out’ .
Earlier media coverage from 2021 seemed to have a different tone, the Mirror reported a boy begging ‘I don’t want to die’ after NHS doctors insisted on end-of-life care and the Daily Mail referred to possibility of a High Court challenge to save a boy from a ‘death sentence’ after a decision was made to withdraw life-saving dialysis. These headlines pointed to various legal questions: was this a best interest decision to withdraw dialysis or could it perhaps rather be a matter for judicial review because the transplant was related to a resource allocation decision due to the scarcity of donor organs (a situation that has sadly been exacerbated due to the ongoing COVID-19 pandemic).
Luckily a Twitter post by Victoria Butler-Cole QC (@TorButlerCole) who is acting for William’s mother, soon clarified the situation: the Court of Protection was being asked to make a best-interest decision regarding medical treatment options for the 17-year-old son. What is expected to be a four-day hearing is scheduled to start on Monday 28th February.
Background to the case
I know a little about the case already from reading an earlier judgment in this case: Manchester University NHS Foundation Trust v Verden & Anor  EWCOP 4 (08 February 2022).
The young man at the centre of the case, William Verden (aged 17), is living with steroid resistant nephrotic syndrome. William also has diagnoses of moderate to severe learning disability, autism, and ADHD with accompanying behavioural disturbances.
- William is in end stage renal failure which means that only two treatment options are available: (1) the dialysis that he is currently receiving, which is only a temporary solution or (2) a kidney transplant.
- The applicant, Manchester University NHS Foundation Trust, approached the Court of Protection for declarations concerning William’s decision-making capacity and to make a best interests determination regarding his treatment options.
- The Trust does not consider a transplant to be in William’s best interests. This decision is based on (1) the likelihood of the steroid resistant nephrotic syndrome recurring in a transplanted kidney, which will mean that William will require another transplant in the future; and (2) William will require sedation and ventilation for up to 6 weeks to ensure that he complies with post-transplant care.
- William’s mother, Amy McLennan does not agree with the Trust’s decision and relies on other expert evidence which essentially states that a transplant is a ‘feasible option’ and that there is ‘reasonable potential for a good long-term outcome’.
- All parties agree that, if he were to have a transplant, then a living kidney donor would be the best option for William, both clinically – because the waiting time would probably be shorter and William would be likely to have a better-matched kidney – and because a living donation can be planned beforehand which will allow William to be well-prepared for the transplant.
This last fact, regarding the preference for a living donor, is where the Reporting Restriction Order comes in. William’s mother made an application to vary the reporting restrictions to permit naming of her son. This was because she wanted to launch a public appeal for an altruistic living donor (a decision supported by William). The variation in the reporting order was made at a hearing on 8th February 2022 (which is why in writing this blog post and reporting on the case I can also – unusually for a Court of Protection hearing – not just report what happened, but also use the names of the key people at the heart of the case). Fortunately, the law does not prevent patients from seeking an altruistic donor via social media but this must be done with the help of NHS Blood and Transplant and the medical team treating the potential recipient. In William’s case a call for a potential living donor has already been launched and within a week media coverage reported that a number of potential living donors had already come forward and would be tested to determine whether they would be a suitable match for William.
Yet, not all aspects of the hearing have been as positive as the public appeal for a living donor. There’s been some concern that William is being discriminated against based on his autism diagnosis, and Mrs Justice Arbuthnot touched on this point in her judgment when she said that “there is a great deal of public interest in the way that people with autism are treated by the NHS”. Relating to the point of discrimination, is the matter of how the court will engage with the question of decision-making capacity and transplantation – especially since there is a growing interest in how to improve access to transplant for individuals who lack decision-making capacity but a rather limited legal and regulatory framework to guide these decisions.
This court case will have a life-changing impact on William and his family. The judge is tasked with making difficult decisions that will have a major impact on individuals’ lives.
Decisions about organ donation and transplantation are usually made by multi-disciplinary teams consisting of transplant co-ordinators, surgeons, nephrologists, and other health care professionals (depending on the trust) based on clinical guidelines provided by the British Transplantation Society and NHS Blood and Transplant. It’s rare for these decisions to be scrutinised by a Court.
I’m excited to have the opportunity to witness first-hand a hearing so close to my personal and academic interests. My daily blog posts for the Open Justice Court of Protection Project will share my observations about what happens in the hearing. I’m eager to see how it plays out in court and whether this hearing might lead to any legal developments in organ donation and transplantation.
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.
[i] The mother’s first name is spelt “Amy” in most of the media coverage and in some court documents I’ve seen, including the judgment of 8 February 2022, but “Ami” in other media reports and other court documents, including the transparency order. I understand she uses both spellings, and will use “Amy” (except where quoting) in my posts.