By Upeka de Silva and Jemma Woodley, 6th December 2022
We work with Compassion in Dying, a national charity that supports people to make their own decisions about end-of-life care in line with the Mental Capacity Act 2005.
We promote the rights of capacitous people to document their care preferences using Advance Statements, Advance Decisions to Refuse Treatment and/or Lasting Powers of Attorney for Health and Welfare.
Recently, we launched a call for guidance on voluntarily stopping eating and drinking at the end of life and so we were keen to observe a case that would potentially address this theme.
Celia Kitzinger alerted me to the case (COP 14017521 Re: EJ, 1st December 2022, Before Sir Jonathan Cohen in the Royal Courts of Justice), having observed the directions hearing last week. Without this, based simply on the Court Listings, I would not have been aware that this matter was before the Court.
The hearing concerned EJ, a 27-year-old woman who has been diagnosed with rapidly deteriorating Functional Neurological Disorder, which has resulted in her currently suffering from functional quadriplegia and an inability to swallow food and drink. EJ has had contact with psychiatric services since (at least) 2018. She 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, having walked into A&E on crutches, complaining of weakness in her limbs.
In August 2022, EJ lost the ability to swallow and has been receiving nutrition, hydration and medication through a Naso-Gastric tube (“NG tube”) and/or hydration and (some) medications via a PICC line (an intravenous line).
Since the end of October, EJ has consistently objected to the NG tube and regularly chews through them or dislodges them by violently shaking her head.
The Trust has 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, had to consider the following:
- Capacity: Whether EJ had capacity to conduct these proceedings and to consent to the provision of treatment including clinically assisted hydration, nutrition and medication
- Best interests: Whether it is in EJ’s best interests to receive clinically assisted nutrition and hydration, and if so whether this should be via NG tubes (as before) or whether she should have surgery to insert a PEG.
Our first experience of being in the presence of P
EJ appeared in Court, from hospital, by video link. We were pleased that she was part of the proceedings but were soon disappointed to realise that other than her own statement, the only witnesses were clinicians. No family members or friends were called. While we have no doubt that the clinicians sought to keep EJ at the heart of their deliberations, we felt anxious about the potential power imbalance.
While it was useful that the cross examinations were undertaken, not just for the benefit of the judge but for EJ too, on many occasions we felt uncomfortable about EJ hearing fairly blunt descriptions of her behaviour (calling a doctor a “robot”) and making claims relevant to her mental capacity to make treatment decisions (e.g. not understanding that she will die).
We don’t know much about P
Ironically, while it was the first time we had observed a case with P directly involved in court proceedings, it was also the first time that we left feeling we knew very little about who she was and what mattered to her. We learned a lot about the pros and cons of various mechanisms for artificial nutrition and hydration but we don’t know what quality of life means to EJ, or what her wishes, feelings, values and beliefs are.
What we do know is based on what she said, quite forthrightly after all the other witnesses had spoken:
“This whole thing is just bullshit. People don’t listen. Surely, I should get to choose happens to me.”
“I want to represent myself. Even Ted Bundy got to represent himself in court and he was a serial killer.”
“I am articulate and I have capacity spilling out of me.
Yes, I did call that woman a robot. I’m sorry about that. (To the consultant) You just spoke a bit robotically at the time. This is a waste of everyone’s time. Everyone has made up their minds already.”
“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 – its about a positive attitude – fake it till you make it.”
When EJ spoke, via video link, she clearly expressed a wish to go home and it left us wondering if more could have been done to explore and/or accommodate this wish. At Compassion in Dying we have become very familiar with the desires of individuals to remain in their own homes and avoid going into hospital. While this is not always possible, an honest conversation around this is always appreciated by the people we support. So while the issue for the court was centred around the insertion of a tube, we couldn’t help but feel great frustration for EJ as this strong desire to go home seemed to be overlooked in the deliberations.
As EJ had been unable to demonstrate that she understood the consequences of refusing treatment (that it would lead to her death) and as she also has impairments in the functioning of her mind or brain, she was found not to have capacity to refuse the NG tube or PEG or other medical treatments.
Sir Jonathan Cohen considered carefully that the PEG may lead to short term trauma and a further erosion of EJ’s trust of professionals, but the alternative is death and EJ does not want to die. Rather she remains positive that “things will work out” and 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.
During the judgment, the main screen visible to me as a remote observer was EJ’s. For this, I was grateful, because seeing how she felt mattered to me greatly. I watched EJ nodding approvingly as she listened to the judge repeat her words in his judgment. However, as soon as he authorised the insertion of the PEG, she asked the nurses with her to help her leave the room.
Although deeply apologetic once it was brought to his attention by one of the barristers, the judge misstated EJ’s name multiple times during the judgment which (the barrister reported) caused her much distress. We fear this only added to EJ’s distrust of professionals involved and her belief that the outcome had already been decided before the hearing began.
On the other hand, we felt optimistic about EJ’s future when 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”. 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.
At Compassion in Dying, we support thousands of people to complete Advance Decisions to Refuse Treatment. The people we support tell us how relieved they feel knowing that these documented wishes matter, clinically and legally. In this way, the Mental Capacity Act 2005 is incredibly empowering.
When we support people to plan for their end-of-life care, we strongly recommend that they spend time explaining who they are as individuals and what quality of life means to them. Observing cases in the Court of Protection has reinforced how important this is for ensuring that decisions are truly person-centred.
So, we both struggled today. We didn’t know what truly mattered to EJ. We heard her objecting in no uncertain terms to the treatment being proposed but we don’t know why she felt this way. We understood that the risk of withholding artificial nutrition and hydration could be death, but hearing from the Consultant Neurologist that another person in a similar situation didn’t need a PEG made us question whether there was no other way to more closely align treatment with EJ’s preferences.
We appreciate that it would be very difficult for clinicians and judges to take a path that would put EJ’s life at risk. Yet, the trauma of her autonomy being overruled, and the loss of trust in professionals and in her own agency are not insignificant considerations.
The complexity of decision-making in this case reminded us of how important it is to never over-simplify matters relating to treatment and care, life and death.
Upeka de Silva is the Policy and Advocacy Officer at Compassion in Dying and tweets @de_upeka
Jemma Woodley is Information Support Officer at Compassion in Dying and tweets @JemmaWoodley2
Compassion in Dying tweets @AGoodDeath
 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.