Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Berridge
Main Page: Baroness Berridge (Conservative - Life peer)Department Debates - View all Baroness Berridge's debates with the Department of Health and Social Care
(2 months, 1 week ago)
Lords ChamberMy Lords, sadness and sympathy are palpable in our inboxes and in this Chamber. Your Lordships’ House is a sobering scene. I begin with what is missing from the Bill—the letter “S”, the plural. As the noble Baroness, Lady Berger, has outlined, there is no mention of family or relatives. Its premise is the western Enlightenment view of the self and individual autonomy, which is alien to parts of the UK, let alone to some of our ethnic minority communities. On the latter, I can put it no better than an article by Chine McDonald, director of Theos, in a post on 26 November last year:
“Many people will be familiar with the southern African term ‘Ubuntu’, which means ‘I am because you are’. In my own community—the Igbo ethnic group of south-eastern Nigeria—there is the concept of the Umunna: the fraternity, the clan or the community … there is a strong sense of existing not as an individual, but knitted into a family … The idea that someone who is facing death might not want to be a burden … is anathema to West African tradition. You can’t be a burden because you are not a separate entity. You’re part of a whole”.
Anyone who has visited the north-east of England might attest to a similar “thick” community.
I heard the compelling story of someone with PTSD after watching the huge syringes of drugs go into their father. There is no duty under the Bill to warn them. What about the effect on you of witnessing the failed process that the Bill outlines? Or are they just not allowed to be there?
Another “S” is “subtle”. Many noble Lords have spoken of subtle pressure, and pressure and coercion are used in the Bill, by relatives, which can be hard to detect. There is another wrong premise in the Bill: that pressure comes from a person. If you join a Facebook networking group, say, for fellow sufferers of the same disease, the algorithms can alter the content offered to you, or comments by others can cause you to idealise the thought of assisted dying, create a reward pathway in your brain and even, according to studies, change the network and structure of your brain. Thus, in fact, the coercion could come from an unquantifiable force, or even an algorithm, not a person. How can medical practitioners ever know if you have been pressurised like this? Although this research field is still in its infancy, could we, in 10 years, be reporting that deaths were actually through coercion on social networking? Even today, a family is suing OpenAI, saying that ChatGPT encouraged their son to take his life. Other studies are now reporting that people are more likely to turn to social media for medical health reports than to qualified physicians. This is the world in which we are legislating. We know that this can influence elections; how can it not influence these decisions?
The clause to prohibit advertising is insufficient. This Bill is for an analogue age, not one on the cusp of AI. Although I support the suggestion of the noble Baroness, Lady Berger, for a Select Committee—and I hope I am not throwing a spanner into the timetable—I do not think we can ignore these issues. I am an optimist, and I hope that the six-month timeline in the Bill—again, because we are on the cusp of medical breakthroughs—will in the future become impossible. Anyone who knows parents of children with cystic fibrosis knows that the new-gen drugs are transformative. How will clinicians advise when they do not know what breakthroughs we are on the cusp of?
My final “S” is single women, as the noble Lord, Lord Truscott, talked about. A meta-analysis of the best quality of Oregon between 1998 and 2018 says that it witnessed an increase of 50% in voluntary suicide of older women over the age of 65. We know that suicide can be contagious. Are we opening up that Pandora’s box again? I agree with the right reverend Prelate the Bishop of London about voting on the principle. This is leadership from the Church of England, and the feedback to me is very welcome. I do not view this as taking your own life; I view it as giving your life back to God. This is a sacred act, and not one the state should provide.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Berridge
Main Page: Baroness Berridge (Conservative - Life peer)Department Debates - View all Baroness Berridge's debates with the Department of Health and Social Care
(2 weeks, 1 day ago)
Lords ChamberWith due respect, I must say, as one of the committee members, that that point was put forward on a number of occasions. Unfortunately, there was a majority of people in the committee of seven to five against, by the way the nomination process worked, so it was the feeling of those members not to invite terminally ill people to speak. The minority of us who were in favour of the Bill tried on a number of occasions to hear them, but that was not allowed.
My Lords, I do not think it is helpful to your Lordships’ House to be going into discussions that included private discussions. The Motion that the House passed did not suggest that. Noble Lords will also know that there are ethical concerns about calling people who are so vulnerable.
I remind your Lordships of the conventions of the House. An intervention on an intervention is not ideal. If we can follow normal conventions, that will be helpful.
My Lords, I agree entirely with what the noble Lord, Lord Markham, just said. We have a tried and tested way of measuring people’s capacity, but we do not have a single tried and tested way of measuring people’s ability. That is a very broad concept, and anybody who has worked in education at any level will say with absolute certainty that it would be unwise to replace what is currently in this Bill with “ability”. There is no definition of it—it can cover a vast variety of different kinds of ability—and finding an adequate test could take years.
My Lords, I declare my interest: I received a personal donation from Dr Etherton to fund research support. Normally, I would agree with the noble Lord, Lord Pannick, in relation both to legal terms that are not defined and to moving to something that is ill defined; he will find, in the later groups of amendments with which I am involved, that this is a key concern that I have had.
The amendment in the name of the noble Baroness, Lady Finlay, talks about “ability”. I have struggled with that, for the same reasons as the noble Lord, Lord Pannick, but I have been persuaded that there is something in this. I served on your Lordships’ Select Committee. One of the benefits of serving on those Select Committees is that you sometimes get to meet your hero. Professor Sir Chris Whitty sat in front of us as the highest expert in the land, but when he gave evidence to the Commons Select Committee he had to write afterwards because he had misunderstood something and had to clarify it. It was after the Third Reading vote, I think. His letter was put in our pack and made public; I thank the noble and learned Lord, Lord Falconer, for nodding. One has to consider the fact that even he got it wrong.
We also heard from Professor Alex Ruck Keene, who is an honorary KC, who trains practitioners in how to apply this test. We heard that, although it might be common and used up and down the land, there is a considerable body of evidence that practitioners are struggling to apply it in what he calls the 15% of cases that are complex. I think this is the kind of case outlined by the noble and learned Baroness, Lady Butler-Sloss.
The committee’s time constraints meant that I was not able to put that evidence to Professor Sir Chris Whitty, as Members’ questions are limited, but I put the following to him because it is sometimes helpful for us to think about the practical realities. The MCA would bring with it its other parts, not just the capacity test. There is a presumption if, for example, an 18 and a half year-old who has had a life-limiting condition all their life is being assessed and the doctor doubts whether that young person has capacity that they have capacity—as far as I understand Professor Ruck Keene. We have to take that evidence into account. There has been some discussion about the royal colleges, but as political parties we know that some people will peel off from the corporate view. We need to take seriously that the royal colleges are not supportive of the Bill. While Professor Sir Chris Whitty might—
My Lords, I declare an interest as chair of the Royal College of Obstetricians and Gynaecologists. I have followed what the different royal colleges are saying and it is not true to say that they are opposed to the Bill in general. Most of them are neutral, one or two are in favour and one or two are against.
As people around me are saying, I do not think I said that. They are neutral. The royal colleges have said that they have problems with the Bill, but they have been neutral on the principle, save for the Royal College of General Practitioners. I am sorry; I stand corrected on that. They are neutral, as is the Association for Palliative Medicine, which is not a royal college.
When one looks at the evidence that we took, of course individuals from within that group would come along whom we had to call. It was right that we did that, but one looks at a corporate view. I enormously respect Professor Sir Chris Whitty, but I heard his evidence on this and he was not the highest expert in the land. He was humble enough to write to correct himself, as he had misunderstood the Mental Capacity Act when he gave evidence in the Commons.
Lord Blencathra (Con)
My Lords, we should all be grateful to the noble Baroness, Lady Finlay of Llandaff, for bringing this matter before the Committee, but also to my noble friend Lord Harper, who has highlighted some of the deficiencies in in the Mental Capacity Act. Yes, it may be tried and tested in its current usage but, as we heard from many sides of the Committee, it may be inadequate for dealing with death issues.
I was going to speak in support of Amendment 2, but I might also be willing to support the potential oral amendment from my noble friend Lord Deben. When considering important decisions, particularly in the context of healthcare, it is crucial to understand the distinction between capacity and ability. This is especially relevant for terminally ill patients, as questions about decision-making may arise on treatment options, advance directives and legal matters.
I believe that we should change references from “capacity” to “ability” when discussing decision-making for terminally ill patients. The reason for this change is to ensure clarity and accuracy in describing a person’s actual situation. We should not be afraid to bring in a new word if it is more relevant than “capacity”. Although “capacity” is a legal and clinical term for specific criteria, “ability” is a broader term that may better reflect the practical realities and nuances of an individual’s situation. Using “ability” can help to avoid misunderstandings and ensure that patients are supported in ways that are appropriate to their unique circumstances.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Berridge
Main Page: Baroness Berridge (Conservative - Life peer)Department Debates - View all Baroness Berridge's debates with the Department of Health and Social Care
(1 week, 1 day ago)
Lords ChamberMy Lords, I will speak to Amendment 48, to which I have added my name, and to my Amendment 846. I added my name to Amendment 48 to explore whether pressure can emanate from a non-human and non-corporate source. As I mentioned at Second Reading, so much pressure nowadays, particularly for young people, comes from the internet, video games, social networking, TikTok and influencers. It is not only the use by people of online devices as a mechanism to pressure another person; it can also be pressure from algorithms themselves, without a human intervening.
In addition to the two prosecutions of OpenAI for ChatGPT allegedly encouraging children to take their own lives, those with chronic illnesses have testified to me that when, for instance, Facebook realises from conversations that you have a chronic illness, it changes your feed from the promotion of group chats and adverts that are positive to negative content about your treatments, whether you can live with it, and even suggesting going to Switzerland. Is it the Bill sponsors’ intention that, when the medical practitioner is verifying under the terms of Clause 10(2)(h), it is not this type of pressure? Are the internet service providers covered by Clause 1, as there is no definition of “person” in the Bill? As I said in Committee, the Bill is designed for an analogue age and not one on the cusp of AI.
Turning to statutory guidance and Amendment 846, the next question is not who applies pressure but what we mean by “pressure”. The former Chief Coroner, Thomas Teague, came to our Select Committee and we asked whether we need to define pressure. He said:
“If it forms part of the ingredients of a statutory offence, then it might be necessary. Frankly, I’m not sure that it would because, for such a common word in the English language, the fundamental principle that lawyers apply is to take the dictionary definition”.
So, last night, I looked in Collins English Dictionary, which defines “pressure” as
“someone … trying to persuade or force”
someone to do something. What a low bar that is that has to be detected. It is a good job that the law will not be retrospective and that there is parliamentary privilege; otherwise, the attempts by the noble and Learned Lord, Lord Falconer, to try to persuade us of the merits of the assisted dying Bill might actually be covered by his own Bill.
I asked the noble and learned Lord in Select Committee whether a consultation is necessary when a new concept is introduced into criminal law. His reply was, “Sometimes yes, sometimes no”. I think that catching mere persuasion means that this is a “sometimes yes” moment, particularly—as has been outlined by the noble Baroness, Lady O’Loan—as this creates the basis for a criminal offence in Clause 34 that can mean imprisonment for life. The noble and learned Lord will not be surprised to hear that later in Committee we will return to his evidence to the Select Committee in relation to Clause 34.
In the Select Committee we asked various professionals what they thought “pressure” meant. Dr Suzy Lishman of the Royal College of Pathologists, who is opposed to the Bill, said:
“I would understand pressure to mean encouragement to go down a particular route, and coercion to involve some force or threat. I have had no training whatsoever in either of these”.
The Royal College of Psychiatrists’ Dr Annabel Price said:
“It would need to be differentiated from coercion in terms of its definition. Coercion would be the application of force, threat”—
I would like to ask the noble Baroness whether the Select Committee asked anybody who is terminally ill what they thought “persuasion” or “coercion” might mean?
The noble Baroness is not answering my question. The truth is, of course, that the committee did not ask anybody who is terminally ill what their view was about any of this.
I will just reply to the noble Baroness, then, that within the Bill that is not necessary. I have outlined Clause 10. This applies to the people who are verifying in the process, not to the individual. It was not in the Motion your Lordships’ House approved that that evidence should be taken.
To continue, Dr Annabel Price said:
“Pressure has a broader definition of perhaps strong encouragement, expectation or the worry of letting somebody down”.
The noble Lord, Lord Patel, joined in this mini focus group and asked:
“If I were to use the word ‘pressure’ and if I were to use the word ‘coercion’, how would you interpret the two?”
Professor Mumtaz Patel from the Royal College of Physicians—again opposed to the Bill—said, “It is grey”.
Amendment 846 also reflects the view of the Law Society, which is neutral on assisted dying but opposed to the Bill. Kirsty Stuart said:
“I think it is really difficult because there is not a definition at the moment … in the Bill”.
That is why Amendment 846 is based on the statutory guidance principle from the offence of coercion under the Serious Crime Act. I note that the Home Office has recently had to issue 91 pages of statutory guidance on that offence. It seems the courts are struggling with it.
Even if Thomas Teague is right that you look at the dictionary, are we talking about economic pressure, emotional pressure, financial pressure, spiritual pressure, reputational pressure, internalised or externalised pressure, or pressure of circumstances—for instance, no one provides you with a hospice bed? As Dr Suzanne Kite, from the Association for Palliative Medicine, said:
“We know that there are pressures of, ‘Can we afford the electricity for the oxygen supply?’ … Yes, these are issues”
that people face “on a daily basis”. The Bill is silent as to what kind of pressure is meant.
To move from individual sources of pressure, there can also be group sources of pressure. Alasdair Henderson, from the Equality and Human Rights Commission, spoke to the Select Committee about
“this wider issue of coercion or pressure at a societal level or an attitudinal level”
and
“the broader trends or cultural issues”.
He said that
“pressure is not always applied directly by another individual, but can result from attitudinal barriers, particularly around disability, and lack of services and support in society as a whole”.
Could pressure come from NICE refusing you, on value-for-money grounds, the drug that you think will wipe out your metastasised cancer? Indeed, the pressure could emanate from the Chancellor of the Exchequer in her Budget, or from the Secretary of State for Health and Social Care, to encourage vulnerable people to take assisted dying, a matter I put to the Government Minister, Stephen Kinnock.
Caroline Abrahams of Age UK said:
“The context again for this is a system in which adult safeguarding is under acute pressure because local government is under such acute pressure”.
The British Association of Social Workers also said that unless these statutory services
“are adequately resourced, that may bend people’s decision a certain way … much of social care is self-funded now. If you are poor and you cannot have access to those personal resources, even more pressure is applied to you”.
I look to the noble Lord, Lord Pannick: how does a medical practitioner sign to say that this kind of pressure—from culture, society or attitudes, or lack of statutory services—is not being put on the individual?
There was unanimity in the Select Committee when we started asking the professionals about training. I said that pressure
“is not defined in the Bill, so I am afraid I cannot help you. We have no definition in the Bill. You are going to need training, though, in pressure. Has any of you received any training like that?”
Professor Nicola Ranger from the Royal College of Nursing, Professor Mumtaz Patel of the Royal College of Physicians and Dr Michael Mulholland from the Royal College of GPs all said no. So we now have additional costs added to the Bill, because we have to devise training in pressure and deliver it to a whole raft of professionals, care staff, et cetera, so that they understand it, in particular bearing in mind the vulnerability to criminal prosecution that exists in Clause 34.
I am going to give the noble and learned Lord, Lord Falconer, this opportunity to shorten Committee proceedings. Deleting “pressure” from the Bill, when it has not been consulted on and has not been subject to pre-legislative scrutiny, would aid the Committee in evaluating the Bill.
My Lords, in a group such as this, which has so many conceptual, linguistic and semantic alternatives on offer, it is very difficult to see how a Committee stage such as this is going to help very much in determining a final solution to the matters under consideration. Therefore, it could become very tempting to enter into the nice and easy solution suggested by my noble friend Lord Pannick, to the effect that the Bill is quite enough and provides sufficient protection. It is right to say that the Bill certainly seeks to provide sufficient protection, and I do not in any way attribute anything other than good motives to those who sponsor the Bill, in particular the noble and learned Lord, Lord Falconer.
I will just follow up my noble friend’s remarks. He is a noble friend; I campaigned for him several times in his constituency when he was an MP, and I will remain a friend of his, I hope. I want very quickly to follow up on his remarks about what we might call the “Pannick paradox” between the decision to ask for an assisted death and the decision to refuse any further medication or help that will continue your life for a short time. My noble friend is right. They are not the same: a decision to ask for a death when you know that death is inevitable, and one simply to deny any further help or sustenance, with starving yourself to death the only way of achieving that end, are very different. The difference is that if someone is able to ask for a calm, assisted death, they will die with dignity and not in squalor, having forced the system to cut off any hope of further life. My noble friend knows that I do not agree with him on this, but I absolutely believe he is right in saying that there is a fundamental distinction. That is one reason why I support the Bill.
It might help noble Lords to know that we are being followed on Twitter. This issue—I am aiming to save time—of the Pannick dilemma has been commented on by Philip Murray, who is a law lecturer at Robinson College in Cambridge. He said the following, and we may wish to seek his advice:
“I find it astonishing that various Lords”—
forgive me for the embarrassment—
“including those who should know better (Lord Pannick …), keep conflating withdrawal of treatment and assisted suicide. The act/omission distinction has underpinned morality and law for millennia”.
I hope that either of the noble Lords, Lord Pannick or Lord Dobbs, will reach out to this gentleman to aid all noble Lords so we will not spend any further time on that dilemma.
Lord Pannick (CB)
My Lords, may I just say that other views are available in the legal community, including among many distinguished judges who I will not name. There are many law reports that question this distinction, not least for the reasons that have just been given.
My Lords, my name is on the amendment that the noble and learned Lord has just mentioned. This was also from Second Reading. There are loads of people signing forms saying that coercion or pressure has not happened. What is the situation with the internet? What is the situation for young people? We are failing young people if we do not make clear how that practitioner is going to know. Young people are pressured through non-human means nowadays.
The Bill makes it absolutely clear that it must be your own decision. Let us suppose that your views of the world are affected by the internet and that you are ill and an organisation is urging you to commit suicide, that organisation should be liable if that happens.
In Amendment 49, the noble Baroness, Lady Coffey, wants “person” to include a body corporate or an organisation in relation to pressure. If an organisation or a body corporate is putting pressure on a group of people or on individuals and that makes them do it—this is putting it crudely, but if an organisation says, “Do have an assisted death; it is the right thing for everybody or for you”—that should be covered by the Bill. The noble Baroness adverted to how “person” can generally include both corporate person and human person, but I can talk to her separately about that to make sure that it is covered.