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Thursday, 7 March, 2002, 21:59 GMT
Right-to-die woman gives evidence
Dame Elizabeth Butler-Sloss
Dame Elizabeth questioned the woman closely
The paralysed woman fighting for the right to die has given her evidence from her hospital bedside. Here are extracts from the interview between the judge, Dame Elizabeth Butler-Sloss, and the woman, known only as "Miss B".

Dame Elizabeth: "Could you summarise the reasons why you have rejected the one-way weaning programme (a programme to wean her off the ventilator), which has been suggested to you here?"

Miss B: "Yes. The programme involved titrated sedation, which means I would be given sedation at the level just sufficient to deal with any anxiety I may have, so I could be managed that way.

"It did not involve any pain relief and it included hydration which I thought could extend my life.

I do not make this decision lightly or uninformed. I have had an opportunity to talk to people, to read other people's experience

Miss B
"My concern was that I would have a very long and uncomfortable, possibly painful, passage because the programme, as proposed to me, was not to gradually withdraw the ventilator, but to reduce it to a level where my ventilation would be inadequate.

"That would provide a situation where I would then develop a chest infection and, possibly, other complications, and then I would die from those complications.

"So, without being too graphic, I would actually be waiting to become septic. I have seen that happen and I know it is slow and I know it is painful.

"One of my other concerns is that I have experienced having sedation here for short procedures like when I had my lungs cleaned out, but I have also had sedation over a longer period during the earlier part of my illness when I was very ill.

"The type of sedation meant that I had very vivid dreams, was very disorientated and did not know where I was or what the nurses' roles were and was very frightened.

"I felt that if I was lightly sedated as part of the weaning programme, and I lay here for a period of weeks, I would possibly go quietly psychotic, quite frankly, apart from the physical discomfort. That just terrified me, the prospect of dying like that, really"

Surfing the net

Miss B: "I have had the opportunity to surf the net and there is a tremendous amount of information and there is a tremendous amount of information there, not just from professionals, but also from other quadriplegics who are also ventilated.

"I have been able to see what they say about the use of equipment and the difference it makes to the quality of their life.

I was angered at the arrogance and complete refusal to allow me access to someone that would

Miss B
"Also I was corresponding with a pen pal in California who is in exactly the same position as me disability-wise who lives at home.

"I was able to have quite candid discussions with her, not only about her physical, daily experience of care, but also how she had made the transition, that I have not, from living in an ICU (Intensive Care Unit) to rehab and to going home.

"I have had an opportunity to talk to people, to read other people's experience, watch videos, rehabilitation, of the work that has been done in America, and I have had quite a lot of information.

"I stop short of doing it, you know, outside in another environment. But, I do understand what it is about."

'No chance of recovery'

Dame Elizabeth: "What is it that stops you wanting to go and do it and then make up your mind?"

Miss B: "Well, there are two things. One, I know what it has to offer and I know that what I want it cannot offer. It offers me no chance of recovery. That is not disputed by anybody.

"Two, there has not been a place available anyway to try it. At a time when I was going through it here and would have tried it, there was no place.

"And I think there is a logistical problem that, once you go to rehab, if my views did not change, it would be extremely difficult to get to a position of having my ventilator withdrawn."

Dame Elizabeth: "There is a note from Dr E who recorded on 30 April that you felt relieved that the ventilator had not been switched off. Was that a correct record of your feeling at the time?"

Saying goodbye

Miss B: "What I said to Dr E is that once we started the process for preparing me for dying - we had talked about things like saying goodbye to family and finalising my affairs, and that it was going to be an extremely stressful weekend (we decided on three days to complete the process) and that I would be saying goodbye to everybody I know virtually - when the decision was taken out of my hands, I felt some sense of relief that I did not have to do that.

"You can imagine it is the first time to be in that position, which is quite surreal, the very idea that you know the timing of your death and you have time to say goodbye to people, but the very idea that it is your decision.

"It is stressful for everybody listening and it is stressful for me, so, yes, I did say that.

"What has surprised me is that that one statement is peppered throughout as if it was a continuous state, and it was one conversation, one comment, that was true at the time.

"I did have some sense of relief, but it was not the sort of relief like, 'I am really glad I am alive', it was a sort of relief that I had a very difficult task ahead of me."


Miss B: "I just felt that I have a legal right to ask for this, and I felt that I was being treated as if I was being unreasonable by putting people in this awkward position.

"I fully accept the doctor's right to say: 'I personally will not do it' and I respect that position. But I was angered at the arrogance and complete refusal to allow me access to someone that would.

"I felt my path was being blocked and I was being pressurised to accept this option, to quietly go away conveniently, even though at tremendous cost to me and my family.

"That was the first time that I really felt angry with the Trust because I could not see how it could be ethical to allow me to die in such an appalling way and that was acceptable to them, but yet it was totally unacceptable to turn off the ventilator.

"If anything it made me angry and made me want to pursue this through the courts more because I felt that my rights were being eroded and that is not something I tolerate really; it is not within my character to go along with that."

Question of suicide

Dame Elizabeth: "You have been asked by Dr SY, have you not, whether, if you were provided with a mechanism to turn off the machine yourself, you would not do so. Is that right?"

Miss B: "No, that is not what I said."

Dame Elizabeth: "Dr SY has recorded... that at least one of your reasons for not wanting to go down that route is that you would consider it suicide?"

Miss B: "No, not that I would I would consider it to be suicide, but that it could be seen as suicide. One of the things I have mentioned to Dr SY, and you will probably be familiar with this, is that I have a Godchild who is struggling with this."

Dame Elizabeth: "She is 12 or 13?"

Miss B: "That is right. To her the notion that her Godmother chose to commit suicide would be painful, and I know that is her feelings.

Broken trust

"But, because I love her, it matters to me... It is also not necessary for my church to be worrying about whether it was suicide or not. Do you see what I mean?

"Of course, you do not care what people think when you are dead, but in a way you do because it goes towards your character and your integrity and I think it does matter.

"If I was desperate before and there were no other way, of course, as a last resort, I would do it."

Dame Elizabeth: "Do you think, for whatever reason, the trust between you and the doctors here has broken down?"

Miss B: "The trust has broken down for me because I believe I have been deliberately misled and that they have been deliberately obstructive in allowing me access to doctors outside.

"For instance I was told over and over again that no doctor would ever do this. Yet, through my own network of friends, I was able to identify several doctors who disagreed with that point of view.

"I was told that I was not being referred to a weaning clinic and, clearly, I had.

"So, for the first time I started to think that this is not just an ethical disagreement, this is obstructive."

See also:

23 Jan 02 | Health
Right-to-die case fast-tracked
04 Oct 01 | Health
Woman granted right to die
05 Oct 00 | Health
Court hears 'right to die' cases
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