Terminally Ill Adults (End of Life) Bill Debate

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Department: Home Office

Terminally Ill Adults (End of Life) Bill

Baroness Prentis of Banbury Excerpts
Baroness Prentis of Banbury Portrait Baroness Prentis of Banbury (Con)
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My Lords, I apologise for giving you three very personal examples. When I was in my late twenties, we had a baby son who died, and I almost died giving birth to him. For a few short hours, while our lives held in the balance, it looked as if choices would have to be made. In fact, this was not the case. There was nothing to decide. But the whole experience gave me a much deeper understanding of where law and medical ethics collide. I learned that, to be kind, law must be very clear. I was able to use this in my later practice in coronial law and, for example, in representing the Government in some very high-profile cases on this issue.

My second point is that death within the law can be—and indeed usually is, as the right reverend Prelate the Bishop of London said—very good. My parents’ deaths are examples of this. My mother’s six years ago and my father’s 12 days ago were assisted by excellent palliative care. Drugs were able to help my parents to breathe and ensure that their pain could be managed at the last. These were good deaths. But my concern is that doctors need to be empowered to be frank and honest and to provide holistic care for the person they are caring for. One of the best things we did for dad was to go round his body disconnecting some of the bleeping machines and syringes that were in him and ask, “Why do you need that? What’s that for? You know that he’s dying. Let’s take it away”.

Those on my side of this debate must be honest as well. There is a small group of illnesses for which a peaceful death is not a likely outcome. We need to focus our efforts collectively on these—on managing them and on managing the law to support them being better deaths.

My third concern is that the ill are very vulnerable. I have recently been diagnosed with aggressive cancer and my treatment starts this week. My prognosis is excellent. I have every advantage. I have a strong faith, a loving family, an interesting workplace, good colleagues, a supportive community, enough money, underlying good health—and indeed excellent treatment, I should say. But there have been some very low moments in the past few weeks, when I have realised the burden I am to my family, who are currently arguing about who should take next week off to look after me. I also have concerns about watching them watch me suffer, as well of course as my own fear, frankly, of pain and loss of control.

I watched that final debate in the Commons, and what struck me was that woman after woman and ethnic minority after ethnic minority, and disabled people, stood up and said, “This Bill is not good enough for my vulnerable community”. My Lords, please do not write me letters and messages; I am drowning in kindness. Instead, I ask noble Lords to think hard about me, with all my advantages, feeling like a burden—just briefly, not all the time. Do not worry; I will be back this time next year, bouncing around. But I ask noble Lords, instead of messaging me, to think about the vulnerable and how easy it is for them to feel that their lives are not worth living.

Terminally Ill Adults (End of Life) Bill Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill

Baroness Prentis of Banbury Excerpts
Baroness Prentis of Banbury Portrait Baroness Prentis of Banbury (Con)
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My Lords, I regret that I was not here this winter during the discussions on the Bill. But watching it on television has been a key part of the rhythm of the weeks that I have spent at home. During my chemo-induced cognitive dysfunction, the plot of “Midsomer Murders” was often beyond me, and the steroid frenzy I felt meant that I often could not settle to a book. But during 13 bouts of chemo and an operation, I kept returning Friday after Friday to this debate. Noble Lords may ask themselves, why? It may be because, as a government lawyer, the constitution is in me like the writing in a stick of rock. But it is also, of course, that as your normal procedures and love of friends, work, food and drink are taken from you because you have to remain isolated, the issues of life and death come sharply into focus.

What I watched, from a unique perspective, with my telly newly installed in my bedroom—shockingly, some might say—was impressive. It was the calm, quiet scrutiny of legislation. Far from few voices were heard, as some have said. I frequently had to consult the booklet to see who was speaking. I saw the former heads of royal colleges explain why no royal college can support the Bill. I saw lawyers worried that coroners are not able to feel that there are sufficient safeguards in the Bill. I saw former NHS managers worried about the effects on the service and staff that they care for so deeply. I saw experts on devolution get into the details. I was impressed by the deep experience of the Bishops, often speaking from their time as parish priests, who, frankly, have held more hands of the dying than the rest of us put together.

As I watched from the coalface of trying not to die, I felt huge sympathy for the very ill people who think that this Bill might be the answer to their problems. Illness leaves you with few options and little control. The systems can seem unyielding and, as a result, uncaring. In my experience, that is worse than pain.

Of course, you are exhausted, miserable and sick. You look awful, you are often smelly, and some symptoms are, frankly, revolting. Of course, you worry very deeply about your family watching you go through all this and what it is doing to them. Even with my excellent care and good prognosis, I have definitely at times felt that death would be much easier. Whenever my treatment has not been as speedy as it might be because of capacity issues—I am currently waiting longer than I want to for radiotherapy, which is due to start the week after next—or when I have been waiting literally on the floor, having fainted in a less than perfectly clean NHS corridor, I have had a vision in my head of crisp white sheets and the certainty that would come from knowing that you were instantly going to die. For me, and I suspect for most vulnerable people, that vision passes and life becomes worth living and good again. But I do not think for one minute that we should deny that that vision is briefly an attractive one.

We owe the dying better than this Bill. We owe them the best death that we can manage and real effort and enthusiasm put into palliative care and all facilities, including temporary nursing where necessary, to help people die at home surrounded by their families. We need to really integrate physical and mental care and not just talk about it. We owe the dying love, care and respect. We hope that crisp white sheets and some control over treatment dates may become part of the normal system of palliative care and not just reserved for people who engineer some form of assisted dying. We owe the vulnerable legislative protection.

Baroness Hayman Portrait Baroness Hayman (CB)
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My Lords, it is an absolute privilege to follow the very moving and focused speech of the noble and learned Baroness, Lady Prentis. Perhaps the one good thing about the last year that has been a real revelation, and something that I respect enormously, is the number of people who have shared their experiences of death, dying and illness and their views about the best way forward. No one can pretend that there is unanimity on this issue. We have to respect all those views and listen to them.

Twenty years ago, I was a member of the Select Committee on Joel Joffe’s assisted dying Bill. That experience, the visits that we made and the evidence that we heard, convinced me that it was possible to frame legislation that safeguarded against coercion and did not compromise but rather complemented palliative care. For me, as the noble Lord, Lord Markham, said, it made the argument for regulation.

So, I was surprised to hear the noble Baroness, Lady O’Loan, describe what could go so badly wrong in an unregulated system—Shipman, coercion and no one knowing what happens. I simply do not accept that a tightly regulated Bill with the sorts of safeguards that are in this Bill is not better than the wholly unregulated system we have at the moment.

On that Select Committee, the visit to Oregon in particular made me very aware of another issue: that having legislation for assisted dying would directly affect only a small number of people who took up the option. The percentage of people who investigated the option and got a prescription—as that system required—but never used it, and who instead found that they could cope with the situation in which they found themselves, was about 30% across jurisdictions. But the very existence of legislation, and a system that they knew they could access if things became intolerable in the end, gave huge reassurance to the hundreds of people who would die under assisted dying legislation. There are thousands who would feel more secure and be reassured by the fact that there was an option. I put myself absolutely in that category and I suspect that many others in the House would do so too.

I participated in the debates. The noble Lord, Lord Baker, is in his place. I went head to head with the noble Baroness, Lady Finlay, on all those debates as well. I participated in all of them. I have been disappointed before and I have seen Bills fail before, but nothing has made me feel, in the words of the noble and learned Lord, Lord Falconer, “despondent” in quite the way that the process we have gone through in the last year has done. So, it is important that we reflect in today’s proceedings, because they should be a reflection on what I consider to be a collective failure.

I think we have failed those people who came to us with experiences, either through families or their own experiences, of the inability of palliative care, however good, to meet what they actually need at the end of life. We have failed those repeated campaigners who knew that the legislation would be too late for them but did not want others to go through what they had. We have failed to respect the consistent weight of public opinion on this issue that we ought to have a different, regulated and safe system, and we have failed to respect the elected House’s request to us to do the job that was described so clearly by the noble Lord, Lord Lansley.

We have to reflect, because all those failures have damaged the reputation of this House and they have damaged what many of us have respected and felt to be very much part of the House’s DNA—self-regulation. We have not fulfilled our duty to use our procedures on a Bill that has been passed by the House of Commons to focus either on the issue of principle by a vote at Second or Third Reading, or on specific detail where we need to calibrate the strength of opinion in this House—to vote—and send our conclusions to the Commons for its response. Instead, we have had the prolonged and painful process described by the noble and learned Lord, Lord Falconer. It has been a protracted, repetitive debate which, ironically, has led to us failing properly to address issues, such as those about the Delegated Powers Committee, which we have to take seriously. I find it disingenuous that the amendment to the amendment states that we have not taken proper account of this committee, when the reason we have not been able to is that we have not got to that bit of the Bill yet, because we have spent so much time on other bits.

There has been criticism of the noble and learned Lord, Lord Falconer, for not moving enough. I think he described the processes that he has been through. I have been present at many of those meetings, and attempts have been made to find a serious process to identify the issues that are most important to try to reach either consensus or a point where we can vote on them and decide what we want to tell the other place. Instead, we have spent hours focusing elsewhere. A very brave woman dying of stage 4 breast cancer said to me, “I’ve listened to you, and what you have been doing is focusing all the time on hypothetical harms, some of them bizarre—the pregnancy test and those sorts of issues. What you have done is ignore the actual and profound suffering that is before your eyes”. That is a serious accusation to us.

Of course, as legislators, we have a responsibility to scrutinise legislation like this for safety, but we also have a responsibility to have a full debate and reach conclusions. We have not discharged that responsibility, and we should all reflect very seriously on that.