Nottingham University Hospitals NHS Trust v JM & Anor

This is an application concerning serious medical treatment made on behalf of Nottingham University Hospitals NHS Trust (“the Trust”) who is responsible for the Nottingham Renal Unit at City Hospital, Nottingham. Proceedings were first commenced on 6^th October 2022. The case comes before me today on an urgent application in the vacation list.

The proceedings concern J, a 26-year-old man. Though he was diagnosed with autism at the age of 5, he received very little support for it. JM’s mother (AM) has mental health issues too, having been diagnosed with schizophrenia. I do not think it is necessary to burden this judgment with JM’s childhood experiences other than to say it was characterised by trauma. The combination of trauma, which JM has been unable to address, and autism, confounds his efforts to process his experiences in life and thwarts reasoned decision-taking. In relation to the issues before this Court, which I will set out below, there is a consensus that JM lacks capacity. A psychological report prepared by Dr Steven Carnaby, Consultant Clinical Psychologist, dated 30^th April 2023, provides a helpful insight into JM’s functioning.

“7.

The social care records relating to [J] convey his childhood as one characterised by significant trauma…

10.

I note that opinions about the appropriateness of [J]’s autism diagnosis have varied from aspects of his presentation seen as ‘consistent with mild ASD’ (914) to the diagnosis being doubted by school (528) or not known about at the time of a LAC Review (1679) but ultimately confirmed at other times (e.g. 1953).

11.

There are references to specific responses from [J]’s or observations of his behaviour by others that in my view can be considered as consistent with a diagnosis of autism. These include the use of ‘unusual’ language or phrases… concrete language and literal thinking, difficulties with emotional regulation and sometimes fixating on one issue and ‘needing to exhaust this before he is able to

move on to something else’ At other points, he is described as able to talk about how to cook and prepare meals to engage in work experience and give the impression of being a ‘very capable young man’.

12.

While these various descriptions might appear to be ‘at odds’ with each other, it is also possible that they represent the ‘spikey’ profile of apparent levels of independence observed alongside areas where support is needed which can often be experienced by autistic people and observed by those supporting them. The CAMHS Consultation report dated 26.2.14 captures this phenomenon to some extent, in referring to both [JM] having ‘lots of good independence skills,

although he is felt to still be very vulnerable and innocent in many ways’.

13.

In my opinion, [JM]’s ‘spikey’ autistic profile needs to be understood in combination with his traumatic experiences. Autism and trauma can overlap in terms of what the individual experiences and what others might observe, and there can be the risk of diagnostic overshadowing i.e the individual’s presentation being considered only in terms of autism without considering the impact of trauma. [JM] ’s situation could be thought about in terms of autism being the ‘lens’ through which he experienced and made sense of the traumatic events throughout his life, affecting his ability to process what has happened to him at the time as well as having a longer-lasting impact in terms of shaping his identity and sense of self.”

Dr Carnaby considered that the extent and nature of JM’s trauma had “exacerbated the situation” and that JM struggled to process his experience through “his autistic lens”. Dr C, who gave evidence before me, very much agreed with Dr Carnaby’s analysis and was able to provide me with a number of examples which reinforced his conclusions.

JM was diagnosed with chronic kidney disease in January 2021 and has acquired Thrombotic Thrombocytopenic Purpura (“TTP”). He requires regular at least 4 hourly sessions of haemodialysis for a minimum of three times per week. It requires to be stated that the clinical consensus is that JM will die within 8-10 days, if he does not receive treatment.

The provision of dialysis for JM is facilitated via a “tunnelled” dialysis line, which is comprised of a tube which tunnels under the skin of JM’s upper chest and exits pointing downwards. Outside the chest, the line is seen to divide at a “Y”, revealing the two internal lumens, both of which end in separate connectors. JM does not accept a diagnosis of chronic kidney disease or his need for dialysis. His mother does not accept this either. Though they share the same view, which is irrational, Dr C is persuaded that they each independently hold the same view and JM’s belief structure has not been superimposed upon him. JM was compliant with treatment when in a hospital setting but frequently refused to attend appointments as an outpatient when living at his mother’s home. Repeated attempts to explain the need for dialysis and the potentially fatal consequence of not having it, have been unsuccessful, even with significant specialist psychologist support.

Following a series of capacity assessments, including by the independent expert, Dr Carnaby, to which I have already referred, on 19th June 2023, the court made declarations pursuant to s.15 of the Mental Capacity Act 2005 (“MCA 2005”) namely that JM “lacks capacity to: (i) conduct these proceedings; (ii) make decisions about the medical treatment he receives for chronic kidney failure; and (iii) to make decisions about whether to be accommodated in hospital or in a care home for the purpose of receiving treatment”. For completeness, in addition to the capacity assessments completed by the applicant, Dr Carnaby has completed 4 reports in total dated 6^th January 2023, 6^th March 2023, 30 April 2023 and 15^th May 2023. Following the commencement of proceedings, there have been a number of agreed administrative orders. In recent months there have been remote hearings before Mrs Justice Roberts on 19^th, 29^th June and 17^th July 2023. Mrs Justice Roberts also conducted three “remote judicial visits” with JM on 20^th, 27^th and 28^th June 2023.

Following JM’s refusal to comply with an interim move to A Nursing Home (or remain in hospital), the parties agreed and the court approved an “Escalation and Behaviour Support Plan” which declared that it was lawful not to compel treatment by chemical or physical restraint and to treat JM on a “responsive” basis only (i.e. by means of discussion, negotiation and persuasion without recourse to restraint). This declaration was made on 17^th July 2023.

The Trust has restored this matter to court on an urgent basis. On 11^th August 2023 an ambulance was called to JM’s house. He was found in bed covered in blood from his dialysis line which had been significantly damaged after being cut close to the junction point. There is very little doubt that it was JM who cut the line. In consequence, the dialysis line had to be removed and subsequently JM has adamantly refused to have a replacement line inserted. The Trust convened a ‘best interests’ meeting, on 11^th August 2023, which concluded that it would be in JM’s best interests to provide palliative care and cease to plan for further dialysis (discounting the insertion of a temporary or permanent dialysis line) unless this is positively agreed by him. For the avoidance of doubt, under this option the Trust would continue ‘gently’ to offer dialysis to JM and, if at any point he expressly agrees, a dialysis line would be inserted. This would include other active treatment. No attempt to insert a line, or otherwise, proactively treat him, would be made if JM’s health deteriorated to the point where he was unable to object or, indeed, if he becomes unconscious.

Ms Roper KC, on behalf of the Official Solicitor, rightly describes this as “a desperately sad case… of a young man who is a victim of a particularly harsh fate”. As Mr Hadden, on behalf of the Applicant Trust rightly and unambiguously states “The stark and tragic consequence of this option is that, barring express acceptance by [J], he will inevitably die within a few days to a week”. JM does not accept this. The doctors and nursing staff have made sensitive, creative and, if I may say so, very patient focused efforts to persuade JM to accept dialysis but they have not prevailed.

The Trust’s analysis of JM’s best interests is shared by Nottingham City Council and the Official Solicitor. The independent expert, Dr Carnaby, has also previously agreed that it would not be in JM’s best interests for any form of restraint to be used to compel his attendance at hospital or secure dialysis. JM’s mother and sister who have attended this remote hearing, are both very clear that coercive measures should not be used to compel JM’s treatment but that he should continue to be encouraged to accept a dialysis line and treatment. They also accept the implementation of a DNACPR while he continues to object. The current views of JM’s younger brother (D) were obtained following a telephone call. D said he did not think the hospital should compel a line but was not sure about DNACPR and wanted the clinical team to speak with his mum. JM’s mother and sister agreed with plan and DNACPR was restored. D made no further contribution.

JM’s mother has ongoing poor mental health and her support for her son’s dialysis has been variable. At various times in the past and during the course of her evidence to me, AM has expressed delusional beliefs regarding her son’s health. She told me that a witch put a spell on her son but she now believes that it is the dialysis that is making him unwell. I incorporate this into the judgment only because it overlaps, to some degree, with JM’s own thinking.

JM was first diagnosed with chronic kidney disease in January 2021, and, following his non-attendance at outpatient clinics, he commenced an extended period of haemodialysis in hospital in May 2021. JM’s health then stabilised, followed by a period of him returning to live at his mother’s property. Whilst living with his mother, JM has been offered psychological support and practical assistance in the form of taxis attending his property to transport him to hospital three times a week for dialysis. JM’s engagement with this support has fluctuated. He would regularly decline to get into the taxi or simply not be in property (or answer the door). This erratic engagement has, inevitably, put his health at risk of significantly deteriorating, including a risk of death. However, once at hospital JM has, historically, complied with dialysis. During a short hospital admission in September, JM was assessed to lack capacity to make decisions about his treatment for chronic kidney disease. It was identified that JM does not understand his kidney failure is permanent, that his kidneys will not recover and does not understand the purpose of dialysis or the risks and benefits of treatment.

On 6^th October 2022 the Trust commenced proceedings. Continued efforts have been made to facilitate JM’s attendance in hospital for dialysis, including the provision of a support worker from early November 2022 to prompt his attendance. Despite this additional support, including varying the times of the treatment slots to promote his attendance, JM consistently refused to attend hospital. At no point have any coercive measures, such as physical restraint or sedation, been used to secure his attendance at hospital or for the provision of dialysis.

Between 11^th and 18^th November 2022, JM was admitted to hospital following concerns about his physical presentation and high blood pressure due to not receiving regular dialysis whilst residing at his mother’s home. He accepted dialysis whilst in hospital. By 25^th November 2022, JM had missed 3 rounds of dialysis. On 25^th November 2022, Dr K (Consultant nephrologist) and Dr C (Renal Consultant Clinical Psychologist) visited JM at home and, following a lengthy discussion, he agreed to travel back with them to hospital. JM then remained as an inpatient in hospital until 20^th June 2023. He complied with dialysis treatment without objection three times per week, with additional sessions required due to high blood pressure resulting from non-adherence to recommended dietary requirements. There was no clinical reason for him to remain an inpatient in hospital during this period, save for the fact that he was not fully compliant with regular dialysis when no longer in hospital. JM was assessed to be deprived of his liberty and was made subject to a standard authorisation by the Local Authority on 14^th December 2022.

In December 2022, the parties agreed and the court endorsed the proposal that it would be in JM’s best interests to attempt a trial move to residential care / supported living as an alternative to him residing with his mother. The view taken was that an alternative home environment may increase JM’s ability and willingness to attend hospital for dialysis and support him better to manage his dietary restrictions and take medication. It took several months for the Local Authority to identify long-term options for J. An interim nursing placement, A Nursing Home, was identified, albeit with significant concerns about the age gap between JM and the other residents. The option of a supported living placement was also identified.

At the hearing on 19^th June 2023, the parties agreed and the court endorsed, that it would be in JM’s best interests to move, in the interim, to A Nursing Home as a “step down” option until a supported living placement became available. On 20^th June 2023, JM met with Mrs Justice Roberts (remotely), during which meeting the Judge set out to him the court’s decision regarding his best interests, both in respect of the need for continued dialysis and the move to A nursing home. Mr Hadden has told me that the impression of the professionals was that this meeting had gone very well. However, in the early hours of 21^st June 2023, JM left the ward without permission. The police were called and he was eventually located at his mother’s house. He was persuaded to return to the ward but left hospital again on 23^rd June 2023. He was returned to his Mother’s home by the Police. On 26^th June 2023, JM was persuaded by a support worker to return to hospital, he refused dialysis but agreed to blood tests to be taken, which demonstrated hyperkalaemia (high potassium levels). Dr F, a Renal Consultant, told me that this complication created a real risk of heart and skeletal malfunction which might cause a sudden cardiac arrest which might not be foreshadowed by any symptoms.

On 27^th June 2023 JM was persuaded to attend hospital for the purpose of a remote visit with Mrs Justice Roberts. He initially refused dialysis but then did agree to a single session and then subsequently became unwell. On 28^th June 2023 JM met remotely again with Mrs Justice Roberts but was unwell and uncommunicative. JM was clear that he would leave hospital again when he felt better and would not return for dialysis.

Between 26^th June and 9^th July 2023 there were 11 visits, at home and in hospital, by his main support workers. Their conversations at home succeeded in persuading JM to attend hospital on three occasions. This was largely achieved by ruses, such as a parallel need for blood tests. He consistently refused to attend solely for dialysis. Support workers deployed a technique called “social stories” to encourage JM to attend, but to no effect.

At an urgent hearing on 29^th June 2023, the parties agreed, and again, the court approved that, in light of JM’s consistent opposition and increasing disengagement, it would be contrary to his best interests to move to A nursing home.

On 7^th July 2023, JM appeared very unwell. The support worker and social worker who had attended his property were able to persuade him to attend hospital for a blood test. On attending, JM refused dialysis but agreed to a hospital admission. Following admission, JM experienced vomiting and diarrhoea symptoms, which are common when he has not had dialysis. His blood pressure was exceptionally high (~225 / 150); his blood haemoglobin level was normal (120 g/L); his serum potassium was 6 micromol/L (high but not dangerous). JM had mild abdominal pain, fever and other indicators of infection. An abdominal ultrasound showed no evidence of appendicitis. Two different bacteria in blood cultures were identified from his dialysis line.

JM was not re-dialysed over the weekend of 8^th- 9^th July 2023 to allow for the infection to settle as much as possible. He was prescribed Lokelma over the weekend to assist with keeping potassium levels down. JM was treated with intravenous antibiotics through his dialysis line to increase the chance of eradication of any bacteria on the inside of the line.

On 10^th July 2023, JM agreed to dialysis after continuing to feel unwell. I highlight this fact because it, to my mind, may resonate with JM’s present circumstances. Dr F and Dr C have suggested that when JM’s false belief system is confronted by pain, discomfort and ill-health, JM may yield to treatment. At present, Dr F considers that JM is in the early stages of what will become a dramatic deterioration. It also requires to be recorded that JM was sick after dialysis on the 10^th July. This was due to his not having received dialysis for some time. “Dialysis Disequilibrium” sometimes occurs when people start, or restart, dialysis when their blood has exceptionally high levels of accumulated toxins. It is transient, and usually settles after 24-36 hours. It is not a prominent or common complication when dialysis is done regularly. Clinicians were concerned that this reaction would simply compound JM’s view that dialysis is not beneficial for him. Should JM change his present, seemingly entrenched position, this remains a concern.

JM’s circumstances were reviewed by Mrs Justice Roberts on 17^th July 2023. At that time JM was still suffering a polymicrobial infection but was improving and accepting of (but verbally declining) dialysis. The court approved the updated Escalation and Behaviour Policy. It was agreed that JM would be encouraged to remain in hospital and to accept dialysis in a more prescriptive, directed manner. In the event of him leaving hospital, JM would continue to receive a package of social care for 21 hours per week (3 hrs x 7 days).

The infections to the dialysis line were successfully treated. JM remained in hospital until 9^th August 2023 when he returned home after receiving dialysis. On 11^th August 2023, an ambulance was called to JM’s home address at 10am. He was found in bed covered in blood. On inspection, one of the central venous catheter lines used for dialysis access had been cut and was bleeding.

JM was admitted via the Emergency Department at a local hospital and transferred to the renal unit at current hospital. It was established that the line has been damaged beyond use and would need to be removed urgently to reduce the high risk of further bleeding from the line. JM consented to the removal of the line but refused the insertion of a new one. He agreed to remain in hospital for a few days to allow the access point of the line to heal over now it is removed but has refused a further line insertion. It was explained to J, in what I am satisfied was clear and entirely unambiguous language, that without further dialysis he will die. He was again told expressly that he will require a new line to be re-inserted if he is to survive. Psychology and speech and language therapist have used communication aids to help explain likely timescales and how hospital will support him as his body dies. They have explained risk of heart attack or stroke. They have explained he can request a line at any time while he is awake. He said he doesn’t think he will request a line as he believes he will not die and he doesn’t want dialysis. JM stated, very confidently, that he would not consent to a replacement line and that he was no longer going to undertake dialysis. He expressed the belief that “nothing bad will happen”; he won’t become “ill with bugs” and he “won’t die”. He was asked what happens when he misses dialysis and could he recall that he had become ill with a bug. He said sometimes he becomes ill with a bug but sometimes he does not and that he had not needed dialysis or a line as a child, so he did not need it now.

A best interests meeting was convened later that day, attended by Dr C, Dr F and the social worker from Nottingham City Council, his Independent Mental Capacity Advocate as well as other nursing and specialists from the learning disability team.

In the absence of a new dialysis line being inserted, JM will become more unwell and die. It is expected that he would die. Dr F considers that death is likely between one week, and ten days, after his last dialysis. His last dialysis treatment was on Wednesday 9th August. Death may be preceded by coma, but there is nevertheless a risk of more sudden death at an earlier stage due to hyperkalemia (high potassium levels). JM is currently receiving medication to reduce his potassium levels, although these are not being monitored as it is felt that it would not alter his management.

At the best interests meeting, five treatment options were considered:

Though there was a high level of consensus, the gravity of the issues required exploration. As I have foreshadowed, I heard from Dr F, Dr C and from JM’s mother. It was clear that each of them had given JM’s circumstances an enormous degree of careful thought. Dr C was able to give me a powerful insight into JM’s complex functioning. Dr F, who had been prepared to contemplate some degree of restraint to save his patient, had arrived at the clear and carefully articulated conclusion that such would be “a short-term measure for a long-term problem”. Dialysis lasts for at least 4 hours at each session. To apply restraint would, both Dr C and Dr F told me, cause JM very considerable distress. It would also compromise JM’s easy, comfortable and trusting relationship with the hospital staff. It requires to be said it would cause the treating clinicians and nurses very considerable distress too. In view of JM’s early life experiences, it might even retraumatise him. In my judgement, it would compromise JM’s dignity.