By Upeka de Silva, 15 February 2023
The person at the center of this case is EJ – a 27-year-old woman diagnosed with rapidly deteriorating Functional Neurological Disorder (FND). She attended A&E on crutches reporting decreased mobility in her legs in April 2022, was admitted as an inpatient, and became rapidly worse so that now she is bed bound and consistently unable to move her body from the neck down. In August 2022, the progressive FND began to affect her ability to swallow. She initially accepted insertion of a nasogastric tube, but when it came out in October 2022 she refused to have it reinserted. She is unable to feed herself.
EJ has a working diagnosis of “Mixed Personality Disorder”, has auditory hallucinations, and her mood dysregulation has raised suspicions of complex Post Traumatic Stress Disorder. She’s been an inpatient in hospital since April 2022.
I observed and blogged about this case before, with my colleague at Compassion in Dying, Jemma Woodley, back in December 2022 ( “It will all work out”). At that point, EJ was strongly opposed to a feeding tube. She’d been receiving nutrition and hydration through a naso-gastric tube against her stated wishes. She’d been chewing through them or dislodging them by violently shaking her head. In court, she said: “I don’t want a PEG. I don’t want an NG tube, thank you. Or a PICC line. I want to go home, ideally today. It will all work out – it’s about a positive attitude – fake it till you make it.”
At that earlier hearing, the applicant Trust (Lewisham & Greenwich NHS Trust) had applied for a declaration that it is in EJ’s best interests to have a PEG (a percutaneous gastrostomy) placed under general anaesthetic, to deliver nutrition and hydration (and medications) directly into her stomach. The judge (Sir Jonathan Cohen) found that EJ did not have capacity to make her own decision about feeding tubes: she didn’t understand the consequences of refusing treatment and didn’t want to die. Rather she was positive that “things will work out”, without any clear idea how that would come about. So the presumption in favour of life-sustaining treatment weighed heavily in the judge’s considerations. He found insertion of a PEG to be in her best interests.
The judge ordered that the case should be back in court (before him) for a review in a few months’ time. He said, given that EJ is “strongly opposed” to the course of action he has ordered, “I think the court owes it to P to consider the matter”.
We appreciate the complexity of the case, and the challenge of making decisions that would result in the death of someone who doesn’t want to die, but as we recorded in our last blog, we were really concerned about “ the trauma of her autonomy being overruled, and the loss of trust in professionals and in her own agency” from this judgment. We left the hearing wondering: “Will EJ adapt to her life with a PEG? Will the medications she’ll be receiving through it help with her psychiatric illness? Will she be retraumatised and feeling defeated? We worry about counting on resilience and psychiatric medication to make up for the loss of autonomy.” (“It will all work out”)
On 14 February 2023, the review hearing took place (COP 14017521 before Sir Jonathan Cohen). I was hoping our questions would be answered.
The Review Hearing (14th February 2023)
Since the last hearing, a PEG had been successfully surgically placed under general anaesthetic. Initially everything seemed to be going well, and EJ was steadily gaining weight.
Then, on 13th January, EJ chewed through her PEG tube despite formal 1:1 supervision being in place. The tube was repaired without any complications but on the 17th of January, nursing staff noted that the PEG feeding tube had been “cut” in three places and it’s understood that EJ had been able to cut or bite through the tube. It’s not been repaired, so EJ isn’t receiving nutrition. She gets fluids through an intravenous line.
At a best interests meeting at the end of January 2023 (after establishing that EJ continues to lack capacity to make medical decisions), doctors discussed the impact on EJ’s mental health of continuing to remain in hospital, and the effect of compulsory treatments in maintaining the “schema of her helplessness”.
Given the impact medical interventions have on EJ, the Trusts (both the Hospital and the Mental Health Trust) have decided that the reinsertion of the PEG would not be in her best interests and is exploring discharge options. This was the focus of the current hearing, which was largely concerned with timetabling matters so that further evidence is obtained about EJ’s short and long-term treatment and care so that the judge can make some discharge decisions at the next hearing.
Despite having received a position statement, it was not easy for me to follow the discussions and decisions being made – I wondered if EJ felt the same.
According to my notes:
- The judge confirmed that the future insertion of a PEG or nasogastric (NG) tube would need court approval (and he did not pre-approve it)
- It was agreed that the Integrated Care Board (“the ICB”) would join these proceedings as a party, as they would be the authority responsible for EJ’s care (including funding it) if or when she’s discharged from an acute bed.
- It was agreed that an independent expert opinion would be sought to review EJ’s case and report on diagnosis, prognosis and recommendations on proposed treatment plans.
- Some further reflection was to take place regarding EJ’s deprivation of liberty and the application of the Mental Health Act 1983 as opposed to the Mental Capacity Act 2005.
EJ’s Wishes and Feelings
Counsel for the Official Solicitor representing EJ’s best interests (Rhys Hadden of Serjeants’ Inn Chambers), noted that EJ now says she would prefer to die than be discharged to a neuro-rehabilitation placement. She also wants to leave hospital and return to live in the community but her previous rented accommodation is no longer available, and she doesn’t currently have a “home” to be discharged to.
When Sir Jonathan Cohen invited EJ to ask questions and checked in with her about her understanding of what was happening, I was reminded once again of how strong willed she is.
In response to whether she would want to speak with the Official Solicitor, she said, “NO! I do not want to speak with them and will not need to do so.”[1]
In response to whether she understood what was decided, she said, “I was not listening. It is super boring, but I’m cool with it. There’s no need to repeat it”.
In response to whether she had any final questions, she asked, “Do I need 1:1 supervision? They are very annoying”.
In response to confirmation that there will be no supervision, no PEG and no naso-gastric tubes, and that this will remain so as long as she stays hydrated, she exclaimed “What a day – thank you – don’t worry, I’m hydrated as hell!”
Next steps
Another (hybrid) hearing is expected to take place in approximately three months when EJ’s short and long-term options for her treatment and care will be explored with the help of independent clinical experts.
EJ will by then have been in hospital for more than a year – a long time to spend feeling like you aren’t being listened to.
However, the regular reviews make me feel optimistic that EJ will remain at the heart of any and all decisions about her treatment and care.
I hope to report back in a few months time on how it’s all working out.
Upeka de Silva is the Policy and Advocacy Officer at the charity Compassion in Dying. Upeka tweets @de_upeka and the charity tweets @AGoodDeath
[1] Quotes based on contemporaneous notes as recording is not allowed. They are as accurate as I could make them but unlikely to be 100% verbatim.
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