Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Smith of Newnham
Main Page: Baroness Smith of Newnham (Liberal Democrat - Life peer)Department Debates - View all Baroness Smith of Newnham's debates with the Home Office
(4 months, 3 weeks ago)
Lords ChamberI am grateful to follow the noble Lord, Lord Patel, because he has just outlined many of the issues that your Lordships’ House needs to think about in the context of this Bill.
We have heard from several noble Lords that this is a matter of choice. Suddenly, the main campaign of those advocating for the Bill is to give people choice. In particular, we have heard that it would create a sense of equality and that, at the moment, if you have the resources, you might be able to go to Dignitas to end your life in the way that you wish but, if you do not have those resources, you will have to stay in the UK and potentially die a more difficult death. Therefore, the logic of the argument goes, by passing the Bill we will create a sense of equality. But the Bill fails to do that. The safeguards in it are not adequate and the time being proposed for us to debate and scrutinise this legislation is not adequate.
I say this, in many ways, for the reasons we have already heard in the Chamber today. The noble Baroness, Lady Falkner, talked about her own medical case and the very different situations if you manage to have quick healthcare through private provision or are stuck on an NHS waiting list. There are disparities at all stages. Those very people who might be able to pay to go to Dignitas may also be the very people who can pay to have private healthcare and have their medical treatment brought forward. Those disparities inevitably exist, so we need to be very clear that just suddenly saying that we are equalising provision and opportunities may not actually make it the case.
There is a very clear sense that ideas are put forward in the Bill but not fully defined, as the noble Baroness, Lady Goldie, in particular noted. The noble Baroness, Lady Primarolo, suggested that many people have written to her and other noble Lords saying, “Please adopt the Bill as it stands. We agree with every word of it”. Really? Much of the legislation is vague and the terms are not defined; I suspect that many of the people advocating for it will not have read it line by line. The noble Lord, Lord Lamont, pointed out many of the questions that remain unanswered in the Bill. Those questions require very significant scrutiny.
As the noble Lord, Lord Bridges of Headley, pointed out, this is one of the most significant pieces of legislation that we have had pass through your Lordships’ House. The Children’s and Wellbeing and Schools Bill has 12 days in Committee. This Bill is scheduled to have four days in Committee. Would it be beyond the realms of possibility for the noble and learned Lord, Lord Falconer, to work with the usual channels to find a way to have more time devoted to the Bill? It does not need to be nine Fridays in the period between January and March; there could be creative ways of giving the Bill time so that it can be fully scrutinised, the safeguards that are required can be put in place and we can do our job of legislating, not just for ourselves and the choice that we might want, but for the most vulnerable in society. At the moment, the Bill is not fit for purpose.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Smith of Newnham
Main Page: Baroness Smith of Newnham (Liberal Democrat - Life peer)Department Debates - View all Baroness Smith of Newnham's debates with the Department of Health and Social Care
(2 months, 2 weeks ago)
Lords ChamberMy Lords, I absolutely agree with the noble Lord, Lord Pannick. The noble Baroness, Lady Finlay, and I have worked together for many years, on many health issues, but I do not think she addressed the issue of why she wants to change the wording.
Given that we worked in 2005 on the Bill that actually put capacity into the legislation, I would be interested to know what her reasoning is. I think that is particularly important because the noble Baroness did not address the issue of choice. Of course, ability, capacity and choice are central to this Bill. I wonder why the committee whose report we have before us did not take any evidence at all from terminally ill people who need to make the choice in this matter. I think that was a grave mistake on its part and that if it had, that possibly would have led the noble Baroness to take a different view.
My Lords, I was a member of the committee. The committee noted that we did not take evidence from terminally ill people. That was not a decision that we took as a committee. Suggestions were made and the clerks did not, in the end, manage to provide us with witnesses who were terminally ill, but it was not a decision that was formally taken. I agree that, had we taken evidence from—
With 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.
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.
I thank the noble Baroness. I note that my former tutorial partner from Oxford was intervened on, or interrupted, for speaking for too long beyond 10 minutes. I shall endeavour still to be within 10 minutes despite having been doubly intervened on.
The report noted that the committee had not taken evidence from terminally ill people. I will leave it at that in terms of responding to the noble Baroness, Lady Thornton. However, we took evidence, as we were requested to do, on safeguarding and procedures, and, within the confines of a very brief committee, we took a wide range of evidence. Should we and could we have taken more? Absolutely, but within the confines of what we were able to do I think we did a job. I certainly did not at any point speak or vote against, or indeed take any view on, the idea that we should not take evidence from terminally ill people, so it is unfortunate that that has become a topic of debate.
The reason I rose to speak is that the question of capacity versus ability is hugely important. There are references throughout the Bill to the Mental Capacity Act, but to suggest that this one amendment is not appropriate is an unfortunate legal point. The amendment says that people should have the ability to make the decision, but “ability” reaches far beyond the narrow confines of the Mental Capacity Act. At various points in Committee, we will talk about capacity. The committee took evidence on capacity, and a key thing to bear in mind about the Mental Capacity Act is that it was never designed for a life or death decision. We need to be very clear as a Committee of the whole House and as parliamentarians—
The Mental Capacity Act is used in life and death issues in healthcare. If someone decides not to have care, the doctor has to ensure that that person has capacity to make that decision, so it is already used in that way.
My Lords, I am grateful to my noble friend for pointing out that the Mental Capacity Act is used for life and death issues, but it certainly was not designed for assisted dying and I suggest that it is not a robust test for these particular purposes. If we are going to pass this legislation, we need to be sure that we have tests that are as robust as possible.
A particular point that we need to bear in mind is that the legislation was not drafted in the way that it is normally drafted; it was done in a way that was described as “on a shoestring”. It is surely up to your Lordships’ House and the other place to ensure that the provisions we have in place do not look as though they have been made on a shoestring. They need to be robust. Decisions about capacity can be taken at a moment in time. We need to ensure that the decision where someone says, “Yes, I think I want an assisted death”, is when they are at a later stage in their illness.
I am indeed, which is why I think it needs to be clearly probed. If that is what your Lordships’ House and the other place intend, we should legislate for that, but I am not persuaded that all Members of this House and the other place will have the expertise that the noble Lord, Lord Pannick, has.
I have probably taken enough interventions for the moment. Others may accept being intervened on for a fifth or sixth time.
It was clear at Second Reading that some noble Lords who are in favour of this legislation want to support it and are open to it being amended, but others simply said, “This legislation is about assisted dying. The citizens of the UK want assisted dying. Therefore, we must support this legislation”. That would be a dereliction of our duty. We need to ensure that any legislation that is passed is robust and that, if noble Lords have passed it, they have probed the Mental Capacity Act and questions of capacity and ability, and that the legislation we get is robust and will stand the test of time.
Ability goes beyond capacity. This matters so much because the simple choice between an assisted death and not an assisted death is not so straightforward. The reason I wanted to speak, and I will come back to this in subsequent groups, was to refer to some of the evidence we took. Evidence-giver after evidence-giver said, “If we are going to have assisted dying”—whether or not they were in favour—“we need to have better palliative care than we have at the moment”.
The Bill, if it goes through, will say that people have to be told their choice between the palliative care available to them and other options. There is a gross inequity in palliative care availability in this country. For some people, there might be a genuine choice between getting the care they could have or an assisted death, and they may get to the point of saying, “The care still is not enough”. In many parts of the country, though, people are not being offered that palliative care, and if we do not make it available, we are potentially creating legislation that causes people not to have the choice that some noble Lords are so passionately advocating for but rather to make constrained choices because the health service is not giving them what they need. So a broader discussion about ability has merits. That is not to cut across the debate about the need for capacity, which will come up at various points in Committee.
Lord Winston (Lab)
My Lords, as a member of the Select Committee that the noble Baroness has just referred to, I think she ought to refrain from criticising something that the committee either said or thought. We merely took evidence. As we will see in the report, we did not make those observations personally.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Smith of Newnham
Main Page: Baroness Smith of Newnham (Liberal Democrat - Life peer)Department Debates - View all Baroness Smith of Newnham's debates with the Ministry of Justice
(3 weeks, 4 days ago)
Lords Chamber
Baroness Lawlor (Con)
My Amendment 178A would require that those who are seeking assisted suicide are referred to a consultant physician in palliative medicine, who will assess them fully and draw up a plan for care. The Bill recognises the importance of patients knowing about palliative care and being informed on the choices, but in so weak a manner that these amendments have been tabled. Other noble Lords who have spoken in the group have very good amendments, which I support, to the effect that a patient would be referred to a specialist team in palliative care or a team which is dedicated to the treatment of this problem.
I propose that, in the first instance, the patient should see a consultant in palliative medicine, who will, one to one, discuss matters with the patient, assess them and prepare the care plan—not instead of the other people involved in the care team, but as the person responsible for doing that. My experience of medicine in other areas is that that is always the first call; care and treatment are then taken from the consultant physician who is responsible.
I say this because other people on a team may lack the detailed knowledge, experience and intellectual rigour of those who have reached the most senior level in their area, and who are responsible for training and leading a team of hospital doctors specialising in their subject. They see many hundreds of end-of-life patients each year. There is also a very good reason to believe that consultants are more likely to be independently minded and beholden to the virtues of their profession rather than the guidance of officials.
The amendment would require a full assessment, because only after an assessment can a patient know the options, as other noble Lords have said, and be in the best position to decide. Yes, it might put a strain on palliative care consultants, but in that case we need more such consultants. We should not put the Bill into effect without them. More broadly, my amendment stresses that, as we see in France and as other noble Lords have said, any move to assisted dying needs to be accompanied by more attention and commitment to palliative care.
My Lords, I speak as a member of the Select Committee that your Lordships’ House decided to convene at the end of Second Reading, partly because, although I am sure that noble Lords participating in this debate and this legislation will be fully aware of the evidence we took, this debate is broadcast and followed much more generally, so I think it is useful to put on record some of that evidence. We took evidence on palliative care from experts, some of whom oppose the principle of assisted dying and some of whom do not, but almost all raised concerns about the adequacy of palliative care in the United Kingdom.
In particular, following the contribution of the noble Baroness, Lady Brown of Silvertown, I quote— I apologise for reading, but I am reading from our report—Dr Suzanne Kite, president of the Association for Palliative Medicine of Great Britain and Ireland:
“Throughout this debate, there has been a strong consensus that current palliative care provision is inadequate, with many services under threat, and that this constrains choice at the end of life. We advocate strongly for the Government to commit to a national policy to ensure universal access to palliative care that is protected from negative financial impact of the introduction of any AD—assisted dying—service, better safeguards for patients, care workers and organisations and a public awareness campaign about normal dying”.
My first question is to the Minister. I realise that she is representing the Ministry of Justice rather than the Department of Health, but I hope she may nevertheless be able to respond. When we discussed the business Motion in the Chamber yesterday, the noble Lord, Lord Stevens of Birmingham, said that the Minister in the House of Commons had suggested that the Government’s next information about the provision of palliative care would not come until after the assisted dying legislation had gone through Parliament. I think many people, whether or not they support the principle of assisted dying or support this legislation in principle, would feel much relieved if they could believe that palliative care was going to be more equitable across the country and that those in more deprived parts of the country would have the same access to palliative care as those in more affluent parts, because there is a disparity.
For many, there is a concern that the choice of an assisted death, which is what advocates of the Bill say they support, will not necessarily be an unconstrained one. If the choice were, “I have been offered everything, including state-of-the-art palliative care, and I still want an assisted death”, that would be quite different from the current proposals. Clause 5 says that the medical practitioner would need to make clear to somebody in a preliminary discussion all appropriate palliative, hospice or other care that is available. But if there is not adequate palliative care available—we know that 100,000 people are already dying without adequate palliative care—then the choice the medical practitioner is giving will not be a real one.
When I raised concerns with the experts who were giving us evidence on palliative care and whether this was a constrained choice or not, there was very much a sense from Dr Kite that she shared the concerns I had raised about the disparities of palliative care and that, for some people, there would not be a real choice. Her response was:
“I share your concern. Our members share your concern. This is fundamental to our position on the Bill”.
Professor Katherine Sleeman, who is also a professor of palliative care at King’s College London and a member of the Complex Life and Death Decisions group, who is not opposed to the principle of assisted dying, said that my point was
“exactly why the CLADD group has suggested that offering a referral to specialist palliative care is not enough. Everyone who says that they want an assisted death should receive a palliative care assessment, and that would go some way—not all of the way, but it would go some way—to addressing what we know about the inequalities in terms of access”.
In light of the evidence we received, I would be grateful to hear from the noble and learned Lord, Lord Falconer of Thoroton, how he would respond to the amendments in this group about palliative care. They seem to be fundamental to the concerns not just of people who might be opposed in principle to this Bill but of experts who really understand the detail. It is surely the duty of this House to ensure that any legislation passed really meets appropriate standards, and we should be very cautious about supporting legislation that does not ensure adequate access to palliative care.
Baroness Cass (CB)
My Lords, I will be brief, because many of the points have been made, but I would really like to make two points. My first point follows the comments of the noble Baroness, Lady Smith, about—I hesitate to use this term—“levelling up”. We know that there is a spectrum of provision available, not just in palliative care but in all the other aspects of care that a dying patient needs, as referred to in Amendment 221 in the name of the noble Baroness, Lady Hollins. I would love there to be the kind of wraparound care within the community that my noble friend Lady Gerada described, but for some patients that is not the case. So, specifying those components that should be available and making them available should be the basic right of every dying patient, particularly one who is carrying as onerous a decision as seeking an assisted death.
But I think the second, and equally important, point about this is front-loading the multidisciplinary assessment, and, ideally, having it clearly written down and held by the patient, which empowers the patient to hold that information and take it with them. Therefore, it facilitates the co-ordinating doctor, the independent doctor and the panel or judiciary process to have available that information from the team who know the patient best, so that they are not having to delay the process by scurrying around in hospital notes or seeking additional information late on in the process, when the patient will inevitably have made a decision, potentially with their family, and a delay due to missing information would be unbearable. So, front-loading is absolutely key to streamlining this process throughout.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Smith of Newnham
Main Page: Baroness Smith of Newnham (Liberal Democrat - Life peer)Department Debates - View all Baroness Smith of Newnham's debates with the Department of Health and Social Care
(2 weeks, 4 days ago)
Lords Chamber
The Lord Bishop of Chester
My Lords, this is an important and moving debate. It is an honour to speak in it and to follow some of the previous contributions. These amendments highlight the fact that eligibility is not the same as motivation. I agree with almost everything that has been said before me; I will not delay the Committee by repeating those points.
There are two things that I want to bring to your Lordships’ attention. First, I remind noble Lords of points made by my right reverend friend the Bishop of Gloucester. The Bill, if passed, will apply to those in our prison system, for whom there will be very particular motivations, which we need to make sure can be fairly applied to them.
Secondly, if the Bill is passed, we have a duty of care to those who survive the deceased. Some of us have had the privilege of sitting with many bereaved families. In my experience, there is almost not a death which does not leave a huge wake of pain behind it. Indeed, the one or two in which that has not been the case have been some of the most distressing pastoral situations I have ever dealt with. Where there has been an element of choice to that dying, the “what ifs”, the “if onlys” and the longings are deeply profound scars, which live with people for a long time. In passing the Bill—if we do pass it—we have a responsibility of care, not just to those considering their own death but to those left behind, those who are caring and those who long to do everything they can to be with those they love deeply, and to support and enable them to carry on living and to do so well.
My Lords, I will briefly speak to these amendments, in particular to Amendment 30. I know from listening to previous groups that the Minister will feel the need to explain that Amendment 30, as drafted, is not fit for purpose and will not help the Bill. However, in Committee, the important thing is to flag the key issues and to see whether we can put forward proposals—I realise that this is a very tall order—for wording suggestions and ideas that might be acceptable to the sponsor of the Bill. There is a set of issues in Amendment 30 that warrants careful listening and attention.
It is not sufficient to say that the Bill is about providing choice. As the noble Lord, Lord Empey, said, most Members of your Lordships’ House have many advantages that would allow us to get specialist treatment, the opportunities of second opinions, and possibly social care that we might need. Other people do not have that. Therefore, it might be appropriate to say at the end of life, “I do not want to be a burden. I want not to be a burden to my family; I should have an assisted death”. That is fine if the choice is that of an individual who has all their faculties and all the resources available to them saying, “This is my choice, and I want to do that”. But what about the person who says, “Actually I think I need an assisted death because there is nobody to care for me, social care in my area is not adequate, the state cannot afford to fund it and the palliative care is not available”?
The answers to the group the end of last week about palliative care started off a series of quite chilling responses. It was said that palliative care is not equal across the country, but we cannot wait until we get something like equality before this legislation should come in. I think that is what I heard the noble and learned Lord say at the end of last week. But why should some people be put in that invidious position of maybe not really wanting an assisted death, but feeling that there is no or inadequate palliative or social care available to them, when other people would not be making those choices?
It is incredibly important that, as this Chamber in Westminster, we do our duty not just to pass legislation because we think that, in principle, it is what society wants and that, in principle, people might want a Bill that allows for assisted dying; we have to ensure that any piece of legislation passed does not leave certain people more vulnerable. At the moment, this legislation does not do that.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Smith of Newnham
Main Page: Baroness Smith of Newnham (Liberal Democrat - Life peer)Department Debates - View all Baroness Smith of Newnham's debates with the Department of Health and Social Care
(4 days, 3 hours ago)
Lords ChamberMy Lords, I wonder whether the House will listen to the point made by the noble Baroness, Lady Gerada, which is that she is probably the only person in the House—and certainly the only person who has spoken this morning—who has had practical experience of assessing people. She spoke very well about the issues which have been raised this morning in relation to the Covid epidemic, saying that, “There was not a clinical or ethical necessity to see people face to face to make proper judgments”. I really want the House to accept that someone with that practical experience should be listened to.
I will make one other short point, which is that I am again surprised, frankly, by the number of people who have spoken this morning who, without, as it were, even mentioning the question of the circumstances of those who are terminally ill and are asking for assistance, talk so much about administrative procedures, the way in which a network might be formed, or the way in which technology could be used. Frankly, I would like to hear a little more from everybody who contributes about the circumstances and problems of those who are actually seeking assisted dying and who may well be those who, frankly, for one reason or another—because they are physically in a way that they cannot do it, or they are perhaps geographically remote or have other circumstances which prevent them being able to access a face-to-face agreement or a face-to-face assessment—none the less very much want an assisted death for their terminal illness. Their concerns should be the ones we primarily consider.
My Lords, the noble Baroness, Lady Jay, just asked us to consider the circumstances of those who are seeking an assisted death, but I would like to give a salutary lesson—I am sorry to disagree with the noble Baroness, Lady Gerada.
My father was taken ill during the Covid pandemic. He did not have a smartphone and was not able to have an in-person consultation. He had jaundice. The message he came away with from speaking to a doctor on the telephone—the doctor had never met him—was, “It’s pancreatic cancer”. My father then spent weeks saying goodbye to all his relatives and friends. By the time relevant tests had been done, it was shown that he did not have pancreatic cancer.
That demonstrates one of the flaws of doing something remotely, which is: what are the messages? The doctors are not getting the cues and the patient is not necessarily hearing what the doctor is saying. I am sure that the doctor did not say, “Mr Smith, you have pancreatic cancer”—clearly, they could not have said that—but that was the message that my father heard. I therefore very strongly support the amendments in the name of the noble Lord, Lord Evans of Rainow, and two of the amendments from the noble Lord, Lord Blencathra.
However, I want to express one serious reservation about Amendment 406A from the noble Lord, Lord Blencathra. If the discussion has to be taken by video conference, it might not be appropriate to say that in every circumstance the only person who should be on that call is the patient. We all know that, when you go to the doctors, even if you are there in person, you have capacity, you are a rational person and you do not have any cognitive difficulties, you do not hear everything. Sometimes, if it is a difficult diagnosis, you do not take everything on board. For some people who are told that they have a terminal diagnosis and understand that that is the case—unlike in the false case of my late father, who did not have a terminal condition at that stage—we know what their settled will is. There are several people in your Lordships’ House who have what their settled will is very clearly on record, in the public domain. But there will be other people with whom the doctor has never spoken before, so they cannot know whether it is somebody’s settled will in a way that the legislation requires.
If, then, there has to be a video conversation, or indeed an in-person conversation, it might be appropriate for there to be an independent advocate or somebody else who would support that person and could say, “The doctor did not really say that, you know”. We need to think about real-life cases. Yes, we need to understand from the medical profession, and it needs to be from the perspective of somebody with a terminal diagnosis, but we also need to understand the reality for ordinary people who do not have the advantages of the internet or the accessibility that Members of your Lordships’ House have.
My Lords, I will speak on face-to-face consultation; my Amendment 483 on this is in a later group.
During the Covid-19 pandemic, it was briefly made possible for the making of a will to be witnessed by videolink rather than in person. This change could have been made permanent, but instead the Government decided that the videolink provision should cease from January 2024. The law is now again that the witness must have a clear line of sight of the person making the will. Are these precautions any less important when assessing whether someone truly wants an assisted death and is not being coerced than when establishing what should happen to their assets afterwards?