Parents in conflict over life-sustaining treatment for their daughter

By Abigail Brown and Ffion Power, 24th March 2021

Editorial note: The judgment has now been published: London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment) [2021] EWCOP 727 (24 March 2021)

The court hearing we observed (22nd March, COP 13712176) focused on “Lilia”, a young woman (20 years old) whose suicide attempt in January 2021 left her with catastrophic brain damage. She is in a vegetative state with a small chance that she might eventually become minimally conscious. Her father thought life-sustaining treatment should continue. Her mother (and other family members and her friends) disagreed. It also became clear that Lilia’s clinical team felt continued life-sustaining treatment (a ventilator and clinically assisted nutrition and hydration) would be unethical and the position of the Trust was that continuing treatment was not in Lilia’s best interests.

The hearing was before Mr Justice Williams.  The Trust was represented by Mungo Wenban-Smith. Lilia was represented by Nageena Khalique via her litigation friend the Official Solicitor (who reserved her view as to whether or not continued treatment was in Lilia’s best interests until after hearing all the evidence).  Both of her parents (who were separated from each other) had their own barrister: Ulele Burnham (for her father) and Alev Giz (for her mother). Both parents gave evidence in court. So did the treating clinicians and an independent expert.

We found the combination of medical information from the doctors and the evidence from Lilia’s parents heart-breaking and extremely thought-provoking – and it was fascinating to see the process of hearing evidence to inform a life-death decision.

The medical evidence

The hearing started with detailed evidence about Lilia’s clinical condition. A neuro-rehabilitation consultant, Dr Hanrahan, had provided an expert opinion about her diagnosis and prognosis. (There was also an expert report commissioned by the father from another expert, Dr Chris Danbury, which largely confirmed the other evidence, but he did not give evidence in person).  Dr Hanrahan was the first witness in court, and was very clear that Lilia’s brain injury was global and profound due to lack of oxygen to the brain resulting from self-strangulation. There was a consensus between his view and what other experts had determined (including her treating doctors and another doctor instructed by Lilia’s father).

We had both already learnt about the vegetative and minimally conscious state from the course we are doing at Cardiff University, but Dr Hanrahan’s evidence was very helpful to deepen our understanding. He is clearly very used to trying to help families get their head around the condition and it was particularly useful how he used metaphor to explain things. He talked about a computer which had been “wiped” of most of its software for example, and explained, how severe brain damage “reduces bandwidth” so there may be very little that a patient can take in. At another point he used the metaphor of the brain as a library with only a few books left in it. Obviously, these metaphors are just a way of communicating to non-specialists but we felt they helped us get a picture and it meant we were able to grasp and retain an understanding of Lilia’s brain injury.

Dr Hanrahan was also very good at making things concrete – explaining how, for example, simply being given a shower may overstimulate and exhaust a severely brain-injured patient to the extent that, even if they are minimally conscious, they may shut down completely afterwards. He explained that he is careful never to try assessing a patient’s level of consciousness on a day they have been showered. 

He thought it unlikely that Lilia would move into the minimally conscious state – but said he could not completely rule it out. He cautioned against seeing any such move as inherently positive. He explained that a “shift in diagnostic category” from the vegetative state [VS] to the minimally conscious state [MCS] should not be assumed to be an “improvement” from the point of the view of the patient. Moving from the vegetative to the MCS minus state does not, he said, necessarily mean a patient will move into full consciousness (he certainly didn’t think that would be true for Lilia). MCS minus can simply mean that the patient exhibits very minimal consciousness all the time at very low levels of detectable awareness. He also emphasised that moving into MCS minus does not necessarily lead to a better quality of life. 

Dr Hanrahan also spoke about the possibilities of pain and distress – and suggested that these might be the first and most persistent sensations that could come back for a patient who moved from a vegetative to a minimally conscious state: pain from a pressure sore or being unable to move, or the sensation of a full bladder. These negative experiences might take up all the available “bandwidth” in a patient’s brain, so there might be little room for any pleasurable experiences.

The father’s perspective

After Dr Hanrahan we heard from Lilia’s father. This began to give us more of a picture of Lilia as a person – who loved Japanese music, enjoyed nature, and had great respect for animals. He was quite emotional, in a controlled sort of way. It was hard to listen to. You couldn’t help but feel sympathy and a knot in the stomach.

He felt his daughter would value any life at all, and he was not convinced that she had intended to kill herself. 

He was quite hopeful that his daughter would become minimally conscious and that he might be able to offer her comfort. He used a German work – “Einfühlung” to express a component of empathy that refers to shared experience – whether it can be processed in a more sophisticated way or not. His view was: “I would like her to be afforded the benefit of the doubt to experience the sensations of companionship, even if she might not have the cognitive ability to process that”.

Lilia would, he said, value life in the minimally conscious state just as she valued the life of an insect, or any living creature regardless of where it was on some arbitrary hierarchy of cognitive ability. He recognised that she might experience “light and dark” in the minimally conscious state, but “for all of us life does involve a mixture of positives and negatives”. 

He felt she would be protected from disproportionate suffering either by going back into a completely unconscious state (either spontaneously though a bodily “instinct” to revert to unconsciousness or through good symptom management). He said he was reassured to know that she was highly unlikely ever to regain sufficient cognitive function to be aware of what she had lost. “We are all grieving Lilia’s loss but that is our grief, our loss – not something she will be aware enough to experience.”

The mother’s perspective

Lilia’s mother spoke more briefly but she was direct and to the point. She talked about what Lilia was like, echoing some of what was said by Lilia’s father, and adding additional detail and perspectives. Lilia was one of the kindest and most thoughtful people one could meet, said her mother. She was loving and adventurous and “wanted to couple her passion for caring for others with her knowledge of science” to become a paediatric audiologist. She had made a list of adventures she wanted to have including visiting the giant redwood forests of California.

Lilia’s mother was not hoping for the possibility that Lilia might move into the minimally conscious state. She said that if Lilia were to become aware of her situation that would be “a fate worse than death”. “She is in a vegetative state and is likely to remain that way, or at worst would get to the minimally conscious state and would be able to feel pain and suffering”. She saw Lilia’s future now as “lying on a bed with muscle atrophy and ongoing complications” and referred to the infections, MRSA, and tongue damage that Lilia had already undergone. She referred back to what Dr Hanrahan had said about “any happiness that she might be able to achieve would be overcome and saturated by discomfort”. For Lilia’s mother, the fact that Lilia would be unable to communicate was devastating: and she emphasised the importance of communication as a “fundamental human right” and a core element in quality of life. Lilia’s mother felt Lilia no longer had a life she would value and that: “She deserves to be allowed to die with dignity”.

In her statement Lilia’s mother referred to evidence in the court bundle that Lilia had spoken to her best friend after a TV programme saying she wouldn’t want to be kept alive in a coma, and had also spoken to her therapist about the possibility of brain damage following a suicide attempt, saying “that would be bad”. 

Later the barrister representing Lilia referred to a whole series of statements from Lilia’s family (mother, sisters, grandparents) and from her friends – all stating that they believe the Lilia they know would not have wanted to be kept alive in her current (or likely future) state. A friend had reported that “It was about experiences for Lilia, rather than thoughts: she enjoyed being outdoors, she treasured experience”. Her younger sister said “she would be stuck in a place and have no way of communicating. The best case scenario would not be enough for her and I really hope she can rest in peace”.

Our reflections

However reasonable and loving the father’s point of view seemed at first, in the end it really felt like he was thinking more about what he wanted for himself than thinking about what his daughter would want. His view was (as the judge said) an “outlier”.  Of course a minority view may give valuable insight, but his distinctive opinion about what Lilia would want did not seem to be rooted in a closer understanding of her, or based on particular conversations. Indeed, it turned out that father and daughter had been estranged for a year, and only reconnected the week before her suicide. That must have been very painful and we felt he wanted to keep hold of what little he could. 

We didn’t find his extrapolations about her respect for life convincing either: she loved animals but does this mean she wouldn’t have taken a severely injured dog to the vet to be put down if she felt it was suffering? It was also unconvincing that she hadn’t intended to kill herself: she had written a suicide note and gone to considerable lengths to get the means to end her life, and timed her attempt carefully (she was subject to 20-minute repeat observations in a psychiatric unit). Obviously, she might have been helped and recovered, but her intentions at the time seemed clear – and her actions appear to us to counter her father’s position that she would never think that ending life was justified. As her mother said, “She chose to kill a human. She chose to kill herself”

Like any observers we were very aware that we bring our own perspectives, values and experiences to what we see – and in this case talking with one another we were aware of some differences in our responses.

I (Abi) don’t think I would want to be sustained in a condition anything like Lilia’s and I didn’t find any convincing evidence that she’d want that either. But I could completely understand how her father felt and sometimes it feels right to “give the benefit of the doubt” and keep open the possibilities of something better. However, I felt that the father’s arguments were more towards the benefit of himself. As I listened to what was said I came to believe that Lilia should not be kept in this state any longer. I would personally find it really hard to be involved in a decision to let anyone I love die and I have been contemplating what I would want to happen if I were in an unconscious state. 

I (Ffion) felt a bit more strongly than Abi about what was the right outcome in this case. I hope to one day become a funeral director: how people want to go, how they want to be remembered is very important to me. Personally, I also really value autonomy for myself, the ability to reflect and make choices. I particularly react against the idea that it might be a good thing that Lilia would never have insight into her condition. Her father found that “heartening” and I can see that it would protect her from distress. But to me, a lack of insight, and an inability to reflect on one’s own life, would be a profound indignity. Of course I don’t know Lilia – but I got a sense of her as a person who wanted to make her own choices and take control. If I’d been the decision-maker, I’d have wanted to hear more about her values around this to overcome my own instinctive rejection of such existence on her behalf. I also felt it would be selfish to keep Lilia here so she could have the very limited experiences possible in MCS and so her father could hold her hand. I felt that even as her father was humanising Lilia he was treating her like an object, to be visited. Would Lilia want to spend a life lying in bed, or propped up in a chair, unable to do anything for herself day after day just to have times when she could share a sense of comfort? It was very shocking when the father argued for Lilia to be moved to a particular hospital setting – and it turned out this was the hospital where Lilia’s mother worked and she was utterly opposed to this idea. So, what he was proposing to impose on her, as Lilia’s mother, seemed oddly off-key, self-centred and misguided. It also seemed to ignore Lilia’s own concerns: in her suicide note Lilia had expressed her regret about the impact of what she was about to do on her family and urged them to use her money for grief counselling. She was eager to be the giver (not just the recipient of) care. “I won’t be there to comfort you” she wrote; “What I can do is give you someone else to support you. It is the last thing I can do for you”. 

The judge

We were both relieved when Mr Justice Williams concluded the hearing with an oral judgment saying that it was not in Lilia’s best interests for life-sustaining treatments to continue. “I am sure” he said “she would not want to live the life that is in prospect for her”. 

The judge tried to keep Lilia central at all times. Even her pseudonym “Lilia” was informed by this determination to recognise her as the unique person she was. The judge set the tone at the very start of the hearing by saying he would not speak of her by anonymising initials – the “CD” of the judgment name. Instead he used her real name during the hearing, and he invited her mother to choose a pseudonym for the published judgment that her daughter might have liked. This was the one point at which her mother smiled: after speaking with her other daughter (who could not bring herself to attend), the mother said they’d agreed that she would have liked to be anonymised as “Lilia” – the name of her favourite teddy bear.

Editorial note: This is the second blog by undergraduate students studying journalism, media and culture at Cardiff University, supervised by Professor Jenny Kitzinger. For the earlier blog click here – and for Jenny’s reflections on the process of mentoring students to observe COP hearings click here.

Abigail Brown and Ffion Power are both second year undergraduate students studying journalism, media and culture at Cardiff University. 

Photo by Oxana Lyashanko on Unsplash

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