“M is rarely awake and all I can describe as is ‘a body on a bed’. She is unconscious for the majority of the time. Even when she is awake, M makes no sign of recognition and does not look at me or engage with me. I find it really distressing because even when she goes to sleep, her eyes do not fully close and she looks so uncomfortable. You can see the whites of her eyes but her eyelids do not shut. The nurses and carers at the hospital try their best to provide M with the routine of care. They put the TV on and radio on, and sometimes she is put in a wheelchair and sat out in her wheelchair in a communal area. However, she never exhibits any signs of awareness, and it is no longer apparent when she is content or enjoys doing something or not, or whether she has any sense of feeling, smell or hearing whatsoever. When I visit M, I always enter the room cheerfully and say hello to her, I tend to her bedding, or change the TV channel, and I will often put on DVDs that I know she used to really enjoy, such as Dirty Dancing and Billy Elliott. I do this out of a sense of routine, and just in case she has any awareness left. However, for around 18 months now I have seen nothing which makes me think she has any awareness of what is going on whatsoever. She never makes a reaction to a change of TV programme, or when myself or her stepdad look directly at her or lean over her. I continue to visit M at least 4 times a week. I insist that I should do her laundry. As her mother, I want to ensure that she is clean and comfortable and that her clothes smell clean and like home, rather than coming from the hospital launderette. Going to see M and caring for her is a huge part of my life. For years now, I find myself getting up, and instead of going to work like anybody else, I have gone to the hospital to see my daughter.”
“M is showing no signs of being aware of her surroundings at all, she is currently not really ‘living’ any life at all, and to keep her alive by forced and artificial treatment at this stage seems cruel… I am aware that M’s treating clinicians have now come to the same conclusion that it would not be in M’s best interests for treatment to continue, and that they agree I am acting in M’s best interests by bringing this application. I am extremely grateful to the clinical and care team for all that they have done to support M over the years. It is incredibly difficult, as M’s mother, for me to reach the conclusion that it is in her best interests for treatment to stop and palliative care instead to be provided. However, I do not feel that M would decide now, if she was able to, that the current treatment is benefiting her in any way, and her life is being prolonged for no purpose, where she has no quality of life. I have always been incredibly close to M, and in fact many people used to comment how we were so similar in mind-set and temperament. I am of the view that if M was able to make a decision right now, she would not want treatment to continue. This application is hugely distressing and emotional for me. I love M with all my heart and have spent almost my entire life caring for. I have been so close to M and feel that I know her inside and out. She would have hated to be in the position she is in now.… This is not the life she would have wanted to continue living.”
“M does not recognise me or the children and her quality of life is virtually non-existent. I feel that the PEG feed is keeping her alive, with no possibility of change or cure – it is simply causing M to suffer. When she was diagnosed, we were told she would live for 18 – 19 years, yet 25 years on she is still living with this terrible condition. When M was diagnosed, I recall her telling me that she would not want to live with Huntington’s for years and years, and although we did not talk about her end-of-life care, I also believe that she would not have wanted to live in this way, considering the type of person she was. She was vivacious and full of life before the onset of her illness, and in my view, she would not have wanted to be kept alive with no hope of recovery or improvement.”
“Currently, my mother can’t do anything for herself and I don’t think she even knows we are there when we visit her any more. I continue to visit her weekly but she can’t make any eye contact with me anymore and doesn’t seem to recognise me at all. My mum used to always enjoy seeing her family, but that enjoyment has now been taken away from her and she doesn’t seem to have any quality of life at all. My mother never mentioned her views or wishes as to her end of life to me. I was very young at the initial stage of the disease and I don’t think she wanted to upset me. We always stay positive around her, even when she became more unwell. However, I believe that my mother would not have wanted to suffer in this way and that it is not in her best interests to be kept alive when she’s just suffering and no longer seems to have any awareness. She isn’t able to enjoy activities, or even recognise people in the room. I feel that it would have really distressed her if she knew that she would be left living in this way.”
“It is impossible to be certain whether and how much M is currently suffering on a day-to-day basis because we cannot assess her awareness of her situation. However, she is not comatose, and it is likely that she does retain some general awareness of the situation as well as an ability to experience discomfort. The situation may be very distressing to her, given her previous views on quality of life and enjoyment. This existential suffering may have been going on for several years and may continue for several more.”
“Taking all this into account, it is my assessment that M’s best interests favour withdrawing artificial nutrition and hydration… I recommend this be done gradually as Dr S has proposed. I recommend nutrition and hydration be withdrawn together, as sustaining hydration without nutrition may prolong M’s general suffering and any additional suffering from hunger, without any particular benefit.”
"The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be."