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Mrs. Claire Curtis-Thomas (Crosby) (Lab): I declare a number of interests. I am a member of the all-party pro-life group. I served as a Samaritan for 18 years. I have also for five years been the carer of somebody who is severely disabled.
I support legislation that will safeguard the interests of adults who lack mental capacity. Those organisations that have been campaigning for the Bill are rightly concerned with the deficiencies in the law that have left people open to abuse and exploitation. I hope that the Bill eventually remedies those deficiencies.
As for the day-to-day care of those who lack mental capacity, the Bill seeks to provide legal safeguards that they do not currently enjoy. Tightening up the oversight of financial affairs of those lacking mental capacity is long overdue. Giving carers greater confidence in their legal standing when looking after those who lack capacity—perhaps by dressing them, washing them and providing medication—is also welcome.
There are positive elements in the Bill. However, I shall not focus on those. Instead, I want to consider how it deals with end-of-life decision making. That is incredibly fraught and complex. If vulnerable adults are not to be placed at risk, it is imperative that we get the parts of the Bill that deal with end-of-life care right. We have some way to go. Like many colleagues on both sides of the House, I fear that unless the Bill is amended, it will leave the door open to the legalisation of euthanasia and assisted suicide. That would be disastrous.
Like many colleagues in the House, I wish that I could talk in the abstract about measures in the Bill. I wish that I could make a speech like that of the right hon. Member for Chingford and Woodford Green (Mr. Duncan Smith), which was quite eloquent and adequately described everything that I wanted to say. But I cannot. I want to talk about the experiences of my mother, who lived for five years in total paralysis.
In 1990, my mother had a massive bipolar stroke. For those who do not know what that means, she was completely paralysed from the roots of her hair down to her very toes. She could not drink; she could not speak; she could not eat; she was doubly incontinent. It sounds pretty horrific, and it is. It is horrific for the individual who is in that condition and it is awful for the carers and people in the family who have to look on. Who would want to see their relative in such an appalling state? It is frightful. All one wishes is that the doctor's hypothesis is correct and that the person quickly succumbs to some bronchial condition. People in such a condition lose the facility to swallow and so fluid eventually enters their lungs and they drown in it. As a relative of someone in that condition, one hopes that that will happen sooner or later.
My mother is an incredibly obstinate woman, and despite all medical pronouncements she survived that appalling stroke and gradually recovered her capabilities and capacity. Once she was better, she came to me and said, "I never, ever want to be put in that position again. If that happens to me again, I want you
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to do everything you can to make sure that I leave this world as quickly as possible." She produced a legally binding advance directive, with which I was very happy and I signed up to it.
We lived with my mother in a marvellous condition for five years until she succumbed to another massive stroke. It was exactly the same as the first one, only there has been no recovery from it. She was admitted to hospital in a state of semi-coma and I went to see her. Like the previous time, she had lost all capacity to speak, and she was put on a drip. I am an engineer, not a medical person, and I am just a daughter. I thought that the drip was some magic fluid that delivered everything. If one speaks to normal people, one finds that they are not sure about it. I thought that the drip delivered everything including food—a little like an aqueous Complan, as it were. I was told that it was keeping my mother hydrated and comfortable.
I went to the doctor and said, "My mother doesn't want to be kept comfortable, actually. She has a legally binding advance directive and her wishes are that she be taken off the drip." This man—God bless him—said, "No, we won't be doing that for some days. We expect your mother to succumb very quickly and we want to make sure she is comfortable until she does so"—recognising that hydrating a body is absolutely essential to keeping somebody comfortable. I cannot and never will sanction or support any measure that results in the dehydration of an individual. It is absolutely inhumane to allow somebody to die of thirst. We collect money to stop that happening in Africa, yet we sit here about to agree that it is perfectly acceptable for people of diminished responsibility. That is unacceptable to me.
Although my mother was in a semi-coma, I felt sure when I was able to look at her as the days passed that, just as before, she was fully conscious and fully aware of what was going on. It was immensely difficult to convince any of the medical staff that, although my mother was totally paralysed, I felt that in her heart of hearts she was still with us. I described her condition as "just like us, only she can't eat, she's totally paralysed and she can't talk." We should look not at the body but at what lies beyond it.
I spent weeks going backwards and forwards trying to get the doctors to agree with the legally binding directive and to get people to see that my mother was not in a permanently vegetative state. I had been told that it was impossible for her to be in any other state given her condition. As the weeks went by, my mother survived, despite all the protestations, and she was moved. I became convinced that she was fully aware of what was going on, but because she could not speak it was very difficult for me to secure concrete proof of that. Total paralysis means that one cannot even move an eyebrow or blink when one wants to. As the weeks went by, my mother remained on a hydration drip, and I slowly but surely became convinced that she could blink to order. As time passed, I realised that she was certainly doing so and was able to prove that, in fact, she was fine. Inside the body that had deserted her, she was fine.
As that was happening, doctors came to me once again and told me that I needed to think about food for my mother. I said, "What do you mean food? She has that hydration drip." They said that she had not had any food for the previous 15 weeks. My mother had been
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very overweight and had lost a lot of weight, but I thought that that was because of her condition. I did not think that she was being starved to death.
Doctors asked me to think very seriously about the matter, because they thought that if they gave her food she might survive for quite a long time, and that not doing so might hasten her death. I went to my mother that evening to talk to her about whether she wanted to live. I sat down next to her bed and said, "We have choices to make, Mum. Tomorrow, they want to operate on you, insert a peg and you'll receive food. If you say yes to that, there is a likelihood that you will live for quite some time. If you say no, you will die of starvation. You'll be quite comfortable, though, because I'll make sure that you're hydrated and you won't have this terrible thirst." People who cannot drink have unimaginably dry mouths. It is horrific. Hydration is desperately needed. I used to swab my mother's mouth with damp cotton just to keep her comfortable.
I made sure that my mother understood what I was saying. I had a nurse with me—a lovely woman who sat next to me and who was present for the conversation. In the morning, I went back to my mother and she blinked out, "I want to live." I had to go to the doctor and say, "My mother has now given permission; get on with the operation, please." There was a legally binding directive, which was made following the most appalling stroke, and five years later an individual who had been struck down with the exact same condition was saying, "I have changed my mind."
If my mother had not had me, all I believe would have happened is that she would have starved to death. I do not think that anybody would have taken the time or known her well enough to realise that she was actually present and capable of making decisions. We make so many judgments on behalf of people who are incapable of making them themselves. That is disastrous. It would have been disastrous in the case of my mother; she would have died. She did not want to die; she wanted to live. She exercised the choice of changing her mind. It is almost impossible for us to know what we would be like under any given circumstance until that circumstance has arisen. It is absolutely wrong of us—the able-bodied and the able-minded—to take that right away from an individual.
My mother was put on an automatic feed. The Bill describes that as medical treatment. My mother did not need any medical treatment to stay alive—she needed water and food. Her body did not need anything else. She lived for five years in that condition. She was a grandmother for five years; she was my mother for five years. I would argue that in many ways they were the best five years of her life.
I fear the effect of some of the omissions from the Bill. I fear what they mean for people like my mother—wrecks of bodies, voiceless bodies. I do not want us to do anything that takes those rights away—nothing. I could not possibly agree to that. Nobody sitting in this Chamber today could agree to it if they had been with me on this journey. It is right that we have discussions and pass Bills to enhance the rights of people such as my mother and the thousands of people in this country who find themselves in a similar position, but we have to be very careful when we do that. We must not take liberties.
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We must not take decisions away from people who cannot speak and presume that, because they cannot speak, we know better. We do not know better.
I will not support the Bill today; I will abstain. I want to see whether some of the amendments that the pro-life group are eager to promote will be accepted. If they are, and if I can read them knowing that people like my mother are protected and have the quality of life that they have a right to, I will be able to support the Bill on Third Reading. If not, I do not intend to let down my mother or the thousands of people in this country who are in the position that she was.
6.31 pm
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