Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness O'Loan
Main Page: Baroness O'Loan (Crossbench - Life peer)Department Debates - View all Baroness O'Loan's debates with the Department of Health and Social Care
(1 day, 15 hours ago)
Lords ChamberMy Lords, I declare my registered interest as a trustee of St John & St Elizabeth Hospital in London.
The first clause sets the tone for the rest of the Bill. It has so many deficiencies and such inherent danger that it has rendered necessary the tabling of so many amendments. Multiple amendments were, of course, tabled in Committee in the other place, but they were not permitted to be debated or voted on. Our duty is therefore to scrutinise the Bill, not to meet arbitrary timetables and a limited number of Committee days. We have to do it properly, because on this work that we do rest questions of life and death.
Clause 1 deals with the “who”; who can decide to end their life with medical support or to be assisted to end their own life when they cannot do it themselves. The definition of “who” is simple and sparse. It demands only that someone has capacity, has reached the age of 18, is ordinarily resident here and is registered with a GP. Clause 1 also deals with what is required—the process for determining. It requires that any decision made by a person who fits the definition in Clause 1 is made by someone with
“a clear, settled and informed wish to end their own life, and … has made the decision … voluntarily”,
and who is not the product of coercion or pressure. We will come to that, but it is not enough.
The decision to end one’s own life is the most profound decision that one can make. One might argue that some decisions are not as immediately serious. If, in a fit of despair or loss of hope, I decide to refuse treatment, I might still change my mind. Similarly, if I stop eating, I may choose to reverse that decision. If I decide to end my life, there is no coming back and no reconsideration, and that is why it is such an important matter.
I think the noble Lord, Lord Pannick, referred to advanced directives in these provisions, by which people can declare their future care, but the decision to refuse treatment and go for a natural death is not a proactive decision to end life. There is no precedent for the Mental Capacity Act being used for a decision to end life.
I would like to briefly intervene, because every day of the week there are hundreds of decisions made in the NHS and independent care about life and death. I will give a very brief example. My brother has had renal failure for 40 years. He has been brilliantly looked after by Guy’s Hospital, and, after the failure of the last transplant, he has been on dialysis for the last five years. It has become more and more wearing and disabling for him, and he has decided that, by Christmas, he would like to make the final decision, with the help and the support that he is getting from the Guy’s team, to end his life.
He is supported in that by his wife, brother, sister and children. We have supported him to make his own decision. It is a life and death decision that he will be supported through. That is the way it happens, day in, day out, in the health service. It is a nonsense to say that life and death decisions are not made. Furthermore, what test will they use? They will use the Mental Capacity Act.
My Lords, the noble Baroness has told us a very sad story about her brother, but it really is not on the issue that I am speaking of today. It is, of course, the case that decisions about life and death are made. What I am saying is that, in this case, the decision is to ask the state to enable the person to administer that, and for the state to bring all the forces and resources available to do it. That is what we are debating today: does the Bill provide a situation in which “capacity” is the correct term to use in this clause?
I support Amendment 2. The use of the word “capacity” is undoubtedly provided for in the Mental Capacity Act. This Bill says that
“references to a person having capacity are to be read in accordance with the Mental Capacity Act”,
which is very helpful. The Mental Capacity Act was not passed to deal with the decision to end one’s own life, but rather it was formulated with the basic assumption that a person has capacity. In November 2021, the Supreme Court said in A Local Authority v JB:
“‘A person must be assumed to have capacity unless it is established that he lacks capacity’”.
It continued:
“This principle requires all dealings with persons who have an impairment of, or a disturbance in the functioning of, the mind or brain to be based on the premise that every individual is competent until the contrary is proved. … Competence is decision-specific so that capacity is judged in relation to the particular decision, transaction or activity involved. P may be capable of making some decisions, but not others”.
Therefore, there are circumstances in which capacity cannot be assumed and a person may not be capable of understanding, to the necessary extent, the information that should underpin any decision-making, or of analysing the consequences of that information or of making a decision in their own best interests. When these conditions are not fulfilled, the Mental Capacity Act requires, in particular circumstances, that a decision be made by a third party, but always in the best interests of the person. As the Royal College of Psychiatrists told us in evidence,
“an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding”
than assessing capacity for treatment decisions.
We have received very helpful evidence from Professor Gareth Owen, Professor Alex Ruck Keene, and Professor Katherine Sleeman of the Complex Life and Death Decisions group at King’s College London. They have stated quite clearly that
“the MCA 2005 was not designed to be a universal framework for determining capacity. It is primarily a workaround for the inability of a person to give consent to actions required to secure their health and social care needs. In the MCA 2005, the principles applying to and the test for capacity apply in a context where a decision can be taken on a ‘best interests’ basis for the person if they lack capacity”.
In the context of the Terminally Ill Adults (End of Life) Bill, they state that,
“no such best interests decision could ever be made”.
Capacity is not a constant state. It may fluctuate depending on a variety of circumstances, including some illnesses, disabilities and the side-effects of medication. A person can have capacity in relation to one decision and not another. A person may have capacity at one time, but not another. It is an enormously complex issue. When the decision in question is the decision to end one’s own life, capacity to make that decision requires very significant analysis in each case at the time in question.
That is the reason why “capacity” is not an adequate word to deal with the situation in which a person is coming to make a clear, settled, and informed decision. “Capacity” cannot be the test. “Ability” is a wider test, and there will be opportunity for the Committee to consider what that might look like as we go through future groups.
My Lords, this issue was well discussed in the Select Committee, and I want to refer to Professor Sir Chris Whitty, who I think knows a little bit about this. I want also to respond to and endorse the words of the noble Baroness, Lady O’Loan, because she talked about concentrating on the interests of the person concerned. They were not exactly her words, but she was saying how important that was. We are talking here about someone who is dying. They are in the last months of their lives and, under the Bill, they must have capacity throughout the stage for which this legislation will provide. In other words, at each stage, they must have capacity. Professor Sir Chris Whitty, who knows a lot about this, spoke on it—it is on page 153 of the committee’s report, if anyone would like to look. He said:
“There is plenty of evidence, and it goes with common sense, that, when people use an existing system that they have used for many years, that they are used to and that has been tested in the courts, they are far more likely to be able to follow a reproducible and sensible pattern of making decisions than if they are faced with a completely new approach which they have not used previously and in which there may well be legal ambiguities the courts have not yet adjudicated on”.
If we want this Bill to work, as I assume the House of Commons did when it sent it to us, and as I think a majority of this House does, we must give to doctors and everyone else a form of words that they already understand, they can use and, above all, what is in the best interests of the patient in front of them.
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.
I thank the noble Lord for that point. As I said at the start, the Government remain neutral and will not be providing government time for this Bill. Obviously, we will look at things when we get to the end of our four days in Committee. I will then work with the usual channels to see what other time can be made available from non-government time, but we will have to see whether we will move on over the next few days.
I say to the Minister that we are talking about four days. The general public know that a sitting Friday lasts from 10 am to 3 pm. People have made arrangements accordingly, and there are reasons of faith and things such as that which require that we respect that ending at 3 pm. On a normal day, the House would sit for up to 10 or 12 hours, so four days is just not enough.