Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(1 month ago)
Lords ChamberMy Lords, I am glad to be able to follow the noble Baroness, Lady Monckton. I declare my interests as a past president of the Royal College of Psychiatrists, and I have a parliamentary scholar, a psychiatry trainee who is appointed by the Royal College of Psychiatrists to work one day a week with me. I was a member of the post-legislative scrutiny committee on the Mental Capacity Act. I also founded and chair a visual literacy charity called Books Beyond Words, which is relevant in a way.
I was listening to the noble Baroness, Lady Lawlor, speak about communication. It reminded me that 18% of the adult population in this country are functionally illiterate. This is really important when we think about making decisions of such importance. I have an amendment later proposing a different framework for assessing capacity, and I will obviously talk about that then, but I want to reflect on how the charity Beyond Words creates really difficult stories in pictures, without any words, to try to help people who struggle with words to understand and make decisions about such things as the care and the treatment that they might require. We currently have about 80 stories, all about the whole story that people can discuss with their peers, their healthcare professionals and their families, to help them to understand an issue, so that they will not be left out but will truly understand. It is very easy to think that somebody understands when you have explained something in words, in simple words, and that the person is compliant with it, but when you explain in pictures and enable the person to say what they have read in their own words, then you get an idea of whether they have understood.
I have been trying to think about how I would be able to create a story in pictures to explain this Bill. It would be several stories. It would take an awfully long time and an awful lot of work to be able to do it. I just wanted to respond to what the noble Baroness, Lady Lawlor, said; I thought it was very important.
My Lords, at the heart of this debate is the question of safety. It is very impressive to hear all the experience around the House and I know that people shared my experience when we took the Mental Capacity Act through the House in 2005. That Act had been years in the making. It had most profound and serious consideration in this House and, most unusually, it then had post-legislative scrutiny, where we went into every aspect of the Act. The noble Baroness, Lady Browning, is quite right; there were many concerns raised about the practice and the absence of proper training, but no one, to my knowledge, challenged the definition of “mental capacity”, recognising the huge complexity of the term, the different circumstances in which it is implemented and people’s responses to it.
The noble Lord, Lord Pannick, said that we have a framework. Safety, I think, relies on and is expressed in the 20 years of practice in the way the Mental Capacity Act has been implemented and has benefitted so many. The assumption that there is mental capacity was in itself a huge and very important statement of a positive right in the law. The Bill before us is another statement of a positive right in the law, where there has not been one, and where so many people are desperate for us to find a route through this urgently.
We have the experience of that Act, the experience and expertise that this House put into reviewing that Act and confirming it with the recommended improvements, and the way the Act is understood—as my noble friend has said, not least by Chris Whitty—as well as its unknown interpretations. We have just heard about the complexity of defining “ability”. We already know of the huge, unframed and unknown complexity of creating another concept in law in the context of a Bill which, itself, has to be so carefully understood, implemented and communicated. We have to stick to what we know, even though it is still a work in progress, because it can still be improved. I hope it will be improved, in the course of this Bill. But it will be immensely dangerous, unless I hear a completely conclusive explanation as to why “ability” is better, if we were to depart from “capacity”.
My Lords, under the Mental Capacity Act, the decision is not made by one individual; the Mental Capacity Act provides for decision-making, which includes the experiences of families et cetera. It is a profound process. This is not a profound process; it provides for a doctor to make a decision about whether a person has capacity and a second doctor to sign it off. It is not the same thing at all.
I attended a meeting, as did the noble and learned Lord, Lord Falconer, during which a doctor told a story about a patient who had signed up for assisted suicide. When the time came, he took a sip of the medicine and said, “I’m not drinking this”—upon which his family told him, “You decided you would die this day; you must do it”. He would not drink it. It took him seven days to die.
The noble Baroness is quite right, and it is a very important part of mental capacity decisions that the families are involved, supportive and completely understand the implications of what it means to have either incomplete capacity or capacity that varies from time to time. There is no reason— I will leave my noble and learned friend Lord Falconer to answer this point—why this should not be a better Bill, and maybe it can be better if we address these particular questions.
Lord Shinkwin (Con)
My Lords, I thank the noble Baroness, Lady Finlay of Llandaff, for her amazing dedication to her patients. That is beyond question. I hope we are united as a House in paying due respect to that fact and also to the fact that her professional experience is a tremendous asset to this House.
The noble Baroness, Lady Finlay, spoke of her professional experience, and I will speak very briefly of my lived experience on the other side of the table—or the bedside—as a patient. She mentioned Dame Cicely Saunders and the reference to total pain. I simply say that I have been there. My disability has taken me there far more times than I would like to remember. It is awful. The bottom falls out of your world, and your capacity to think clearly, rationally and normally evaporates. So I simply say that it is crucial that patients have the ability to choose: the choice between assisted death and specialist palliative care—a choice that they do not currently have.
I simply finish on this point. Other noble Lords have mentioned the Royal College of Psychiatrists. I ask the Committee to take note of the fact that the Royal College of Psychiatrists states that applying the Mental Capacity Act to the decision to end one’s life is an entirely novel test—in “uncharted territory”, with “no experience or precedent”.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(1 week, 4 days ago)
Lords ChamberI am delighted to hear it in relation to embassies and charities, but the other example given was the person living in Spain who wants to come back to die here. It seems to me that needing to be resident in this country for the last 12 months would not allow that person to do so. The noble and learned Lord might just look again at that particular element of residence.
My Lords, I hesitate to interrupt this fascinating debate between our lawyers. I have no legal experience, but I have investigated the notion of domiciliary status at some length for different reasons. I absolutely agree with anyone who has tried to work their way through the 93 pages of conditionalities and various different criteria.
I come back to the central point in the excellent contribution by the noble Lord, Lord Lansley, about the need for consistency with the NHS and the implications of not being consistent. The terminology is not just about domiciliary status. What is the notion of permanence? We could have an equally long and problematic debate over that other element of the terminology. I completely respect that this is a probing amendment, but just as we had the beginnings of a debate on mental capacity and the necessity for consistency and trusting that what we already know works, because we see it every day in practice, so the notion of ordinary residence should simply, as far as I am concerned, end the conversation. I think there is a welcome consensus around the Committee that this is the only definition that is going to be practicable, workable, known and acceptable. I hope we can move on with the debate in that context.
Does the noble Baroness accept that ordinary residence does not end the debate because the Bill goes on to impose an additional qualification about having lived in this country for 12 months prior to the date of signing the first declaration? If it were just ordinary residence, legally no issues would arise—there might be other issues—but we also have a 12-month requirement, which appears to me to be arbitrary and risky.
The noble Lord is right, and there are specific instances. The noble Baroness raised one in relation to the Crown dependencies, where these definitions will have to be tested in some way. But the purpose of the Bill is to ensure that people living in this country have a right to the security that they will be treated within the NHS and that the normal rules and behaviours of the NHS will apply to the conduct of this Bill as they do to everything.
My Lords, my amendments would remove the 12 months, because that would enable greater alignment with practice in the NHS. I make a plea to noble Lords that we might hear from those who have tabled amendments so that we complete the group more quickly. I think it is a discourtesy to those who have tabled amendments not to hear their explanation for them.