Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Blake of Leeds
Main Page: Baroness Blake of Leeds (Labour - Life peer)Department Debates - View all Baroness Blake of Leeds's debates with the Ministry of Justice
(1 day, 7 hours ago)
Lords Chamber
The Earl of Effingham (Con)
My Lords, these amendments make fundamental changes to the process by which a person is able to access assistance with ending their life under the Bill. It is clear that the noble Baroness, Lady Finlay, has put great care and thought into these proposals, drawing on her decades-long, extensive experience in medicine. The noble Baroness, Lady Hollins, put it so well when she said that “years of work” and thinking on how this will work have been done by the noble Baroness, Lady Finlay.
Amendment 333 replaces the doctor’s assessment with the multidisciplinary panel process, bringing skills and knowledge from the health sector, the social work sector and the justice sector, including 10 years of minimum relevant experience. Our understanding is that the noble Baroness, Lady Finlay, is seeking to strengthen the safeguards for people who are seeking an assisted death, which was also referenced by the noble Lord, Lord Harper.
We know from previous groups already debated, and indeed this very group, that many noble Lords are profoundly concerned about vulnerable individuals. On the basis of what appears prima facie to be a widespread sentiment in your Lordships’ House, may we ask whether the noble and learned Lord, Lord Falconer, agrees that potentially more can be done to safeguard those vulnerable people and ensure that they are not pressured into seeking assistance under the Bill?
If the noble and learned Lord were to acknowledge these concerns and accept relevant amendments, will the Minister, the noble Baroness, Lady Blake, please set out any assessment that the Government may have researched regarding the practical solutions required to implement the proposals of the noble Baroness, Lady Finlay—points touched on by the noble Baroness, Lady Cass, and the noble and learned Baroness, Lady Butler-Sloss? Will the Minister also give your Lordships’ House a sense of the Government’s view on the balance that they will need to strike between the risks of a vulnerable individual dying in a circumstance where their capacity, understanding or will might be in doubt versus the practicality of delivering an assisted dying service?
My Lords, I thank all noble Lords for taking part in the debate so far today. As we know, this group of amendments focuses on two core subjects: first, adding a new multidisciplinary panel process into the Bill, tabled by the noble Baroness, Lady Finlay, and secondly, amendments in relation to approved substances. This is a large group of amendments. As ever, my comments will be limited to amendments where the Government have major legal or technical workability concerns.
On the suite of amendments tabled by the noble Baroness, Lady Finlay, it is the Government’s view that, logically, these amendments stand or fall together, as they are a systemic change to the Bill. The amendments would introduce a new system of “assisted dying panels”, distinct from the existing assisted dying review panel in the Bill. These panels would receive and consider requests for assistance as part of the first declaration process, replacing the role of the co-ordinating doctor. The amendments would also introduce the concepts of “licensed assisted dying services”, “navigators for assisted dying”, and “designated” pharmacies. These are rightly policy choices and matters for the sponsor and for Parliament to decide on.
However, noble Lords may wish to note that it is the Government’s view that this package of amendments would lead to major technical, legal or operational workability concerns. The amendments introduce new concepts that would require significant further work to ensure that the policy intent was clearly understood and could work with the rest of the Bill.
The point about the drugs and their control will surely have to be dealt with by the Government, whatever happens. What assessment have they made—surely they ought to make it in any circumstances—about how that should be done, what it would cost and how one can protect people from dangers which have happened? It seems to me that that is not a policy matter but a practical matter which we ought to understand from the Government.
I can only refer the noble Lord to previous comments that the details around these matters will be considered when progress is made. It is not appropriate for those matters of detail to be considered now. The noble Lord is shaking his head, but I think we are very clear about the responsibility of government at this moment in time, and it will be for my noble and learned friend to respond to the detail of policy as we go forward.
If the Minister does not mind me saying so, this is a real problem. If we do not know—because only the Government can tell us—what the mechanism whereby drugs would be dealt with would be, how can we make decisions about this? We really need to know from the Government, under the present Bill, what in general the way in which they will deal with this is, otherwise we will have to put it into the Bill because we do not know. It really is important for the Government to help us.
I completely recognise the noble Lord’s strength of feeling, which he has expressed on many occasions. However, I just reaffirm that we would go through a process for determining the mechanism around the matters that he raises should the Bill progress, and that is a clear point from the Government in response to his—
Lord Winston (Lab)
I wonder whether my noble friend the Minister might be able to help me. I presume that the Government would look at the extensive literature that is available in medical and scientific journals on the action, tests and usage of these drugs in a number of sovereignties where they have been used successfully for assisted dying.
As always, my noble friend raises an important point. I will go on to talk about the whole issue of substances, so if I do not address the points he raised, I will be happy to speak or write to him afterwards to make sure that he has had the clarification he requires.
I want to press the Minister a little for an answer, not necessarily this minute, on the point that my noble friend Lord Deben makes. It is perfectly proper for matters of genuine detail to be dealt with after Parliament has passed primary legislation; there are many pieces of legislation where we do that. However, there are quite a lot of issues which are not set out in the legislation—this is part of the concern that the Delegated Powers Committee set out—and they are not, by any stretch of the imagination, details. They are fundamentally important issues around, in this case, the substances. Can the Minister therefore take away the idea that if the Government cannot answer on some of these really big issues that are left not set out in the legislation, it will make it incredibly difficult, even for people who support the principle of the legislation, to support it in practice? It would be more helpful if, on these bigger issues, the Government could set out what their position is.
I just reinforce to the noble Lord that it would be completely wrong to pre-empt the decisions of Parliament—I am sure he is fully aware of that. I just want to give reassurance that, across all these issues, evidence would be considered in the usual way in considering the substances to be used should the Bill pass. I think I have been exceptionally clear on this, and we need to move forward.
Given the size of the group, I reaffirm that it would be impossible to address each amendment specifically, but the broad thematic workability concern is that the use of unclear and ambiguous language could result in unworkable duties and increased risk of legal challenge.
I turn to amendments tabled in relation to the regulation of approved substances and clinical trials. Many of these amendments are policy choices and are therefore a matter for the sponsor and for Parliament. However, noble Lords may wish to note that many of these amendments also introduce new concepts that would require significant work to ensure the policy intent is clearly understood and that they are coherent for the rest of the Bill. I draw noble Lords’ attention to a number of amendments where the Government have major workability concerns.
Amendments 701 and 713, tabled by the noble Baronesses, Lady Grey-Thompson and Lady Hollins, relate to clinical trials for approved substances. First, these amendments could delay implementation of the Bill until a clinical trial or evidence-gathering study is completed, which could make implementation within the four-year timeframe difficult. Noble Lords may wish to be aware that these amendments could create workability concerns relating to the ethical and regulatory challenges for clinical trial processes for approved substances.
Does the Minister think it is ethical and right to administer drugs that have not been cleared through a normal process and to expedite their use? Surely we have to wait until the drugs have been properly tested.
I do not think it would be appropriate to comment on that level of detail at this point.
I hope that noble Lords can listen to what I have to say. The clinical trial processes for approved substances are, of course, an essential part as we move forward.
Amendment 703, also tabled by the noble Baroness, Lady Grey-Thompson, would not be workable in its current form. It would require a clinical trial process that would delay implementation. The effect of the amendment is unpredictable as it is unclear whether the intention of proposed new paragraph (d) is to regulate the substances themselves, the approval process or the body responsible for oversight.
Amendments 704, 705, 698, 708 and 710 were tabled by the noble Baroness, Lady Finlay. Amendments 704 and 705 seek to amend the powers under Clause 37. These amendments would limit Clause 37(4), so that regulations may apply only to substances that have received approval in the Human Medicines Regulations 2012—the HMRs. Those regulations provide for licensing, which is a marketing authorisation of medicinal products and not approval. This is a different legal concept. Additionally, if the amendment is read as requiring licensing under the HMRs specifically for assisted dying, this would be operationally complex to design and implement.
Amendment 698 would require any regulations made under Clause 37 to be consistent with the existing rules for medicine overseen by the MHRA and for controlled drugs overseen by the Home Office. We believe that this requirement, in practice, is unworkable. The substances that may be approved under Clause 27 will not necessarily be medicines licensed for this indication or controlled drugs. If a substance falls outside those regimes, it would be impossible to make regulations that are genuinely consistent with them. This amendment may therefore place requirements on the Secretary of State that cannot be met.
Amendment 708 would require that, for the Secretary of State to make provision by regulation to allow for the use of devices to enable assisted dying, such devices must have Medicines and Healthcare products Regulatory Agency approval. This approach does not align with how much the regulatory system for medical devices currently operates. Although the MHRA is responsible for regulating the UK medical devices market and requires such devices to be registered with the agency, it does not approve or license medical devices individually. Medical devices are placed on the market following conformity assessment under the UK Medical Devices Regulations 2002, usually carried out by independent approved bodies.
Baroness Lawlor (Con)
May I just clarify? I think that response was in response to my amendments to Clause 37 for the manufacture of these products. However, Amendment 552B is in respect of the limited number of designated pharmacies which were distributing these drugs. In Amendment 552, the noble Baroness, Lady Finlay, referred to three designated pharmacies. The noble Baroness, Lady Hollins, wanted those three pharmacies to be limited to dispensing and storing but not supplying. Mine was simply an amendment to that from the noble Baroness, Lady Hollins, to say that they should be ordered in on a case-by-case basis; it was not an amendment to Clause 37 at this stage.
Apologies; I thank the noble Baroness for her clarification on that point. I was mid-sentence, so forgive me if I repeat myself. Limiting the number of manufacturers based on prior prescriptions is operationally impractical and could risk supply shortages.
I turn to Amendment 713A from the noble Baroness, Lady Hollins. This amendment appears to seek to introduce a parallel approvals regime, but it does not specify how that should relate to the Secretary of State’s separate power.
I just want to ask the Minister about her response to the noble Baroness, Lady Lawlor. She was, I think, saying to the Committee that limiting the places at which you can get the lethal drugs that will be required for death would inhibit the process. I say to her that there are situations in which the supply of medication is limited in exactly that way. Some years ago, I had toxoplasmosis, and the only place the drug could be administered then was Scotland. So it is possible; such systems exist now. I do not quite understand why drugs to treat toxoplasmosis have to be controlled, but the suggestion is that drugs that will kill people do not.
I would be happy to write to the noble Baronesses with clarification on that point; I thank them for their interventions.
As I was saying, Amendment 713A appears to introduce a parallel approvals regime, but it does not specify how that should relate to the Secretary of State’s separate power under Clause 27 to specify the list of approved substances. This could lead to operational uncertainty. Although the amendment could be delivered, establishing a dedicated regulatory pathway would likely require adjustments to the MHRA’s remit and internal processes.
I turn finally to Amendments 887A and 888A from the noble Lord, Lord Empey, which would amend Clause 57 by removing the reference to Northern Ireland. This would mean that regulations made under Clause 37 would not extend to or apply in Northern Ireland. As medicines regulations are UK-wide, should this amendment be accepted, it might create legislative divergence across the UK. This does not mean that assisted dying would be legalised in Northern Ireland.
As noble Lords will be aware, many of these amendments have not had technical drafting support from officials. If your Lordships support these amendments, the Government will need to revisit the drafting of amendments and the Bill as a whole to ensure that they are workable and coherent, both internally and with the wider statute book.
My Lords, I am grateful to the noble Lords who have participated in this debate. I will divide my responses thematically under four headings.
I turn first to the new scheme proposed by noble Baroness, Lady Finlay of Llandaff, in relation to how one deals with safeguarding here. The scheme would involve not having two doctors, then the panel, and then a doctor again at the point of administration; instead, the person who wants an assisted death would have to apply to a separate organisation, where a panel of up to seven people would consider their application. That panel would consider whether the safeguards are satisfied, as well as a number of other questions. If it were satisfied, it would give a provisional certificate of eligibility. The drugs could not then be delivered—I use that word without meaning “delivered to the person”—because an application for fast-track care and support would have to be made. If that application were granted, then—and only then—could the drugs be administered.
If there were doubt in the mind of the seven-person panel, the matter would be referred to the High Court. The provisions put forward by the noble Baroness do not specify what the role of the High Court is. The panel has to satisfy itself that a number of questions have been addressed, although those questions do not determine whether or not somebody is entitled to an assisted death. That is the proposal from the noble Baroness, Lady Finlay. The current proposal in the Bill is that the co-ordinating doctor has to satisfy themselves of seven or eight strict matters, and then the panel considers the case. The co-ordinating doctor then, satisfied that the conditions have been met, provides assistance to the person who wants to die.
Underlying the distinction between the two proposals is the wish of the noble Baroness that the whole process of assisted dying be kept completely separate from the care that is being given to the patient. I am sorry that neither the noble Baroness, Lady Cass, nor the noble and learned Baroness, Lady Butler-Sloss, is here, for they both highlighted that, under the scheme in the Bill, the people who will be going through the checks—the co-ordinating doctor and the independent doctor—will have to have opted in to specialist training. To some extent, they will be specialists themselves in assisted dying.
If one wants to give as much help as possible to the person who wants an assisted death, it must be better that the person providing the assistance can work within the team that is already providing care. It does not mean that they should be in any way pressing for a particular result. But, if we introduce assisted dying, and we want somebody to do the assessment and give the assistance, we are probably going to have ask somebody with some experience. We do not want to force the patient into an over-complex, entirely separate process.
I note that the noble Lord, Lord Stevens of Birmingham, said that he wants the process kept separate from the NHS, but I am absolutely sure that he does not want the patient to embark on a very complex bureaucratic procedure. He has given reasons why he wants it kept separate from the NHS. As sponsor of the Bill, whether it is precisely separate or not is, for me, not the key question; the key question is whether, if a patient wants an assisted death, there is a practical and safe way of doing it that does not place an undue burden on them.
The proposal from the noble Baroness, Lady Finlay of Llandaff, is overengineered and much too separate from the care of the patient. It leaves out so many aspects. In particular, the drafting of her proposal does not indicate what her seven-person panel has to be satisfied of. The idea that seven people have to be satisfied is, in my respectful submission, much too onerous. Having two specialist doctors and a panel of three examining the case is, with respect, a much better proposal. I have thought very carefully about the noble Baroness’s proposal, but I have to say that the proposal in the Bill is so much better, so much more workable and so much more focused on the patient.
My Lords, the sheer number of amendments from noble Lords on all sides of the Committee that are seeking to prevent medical practitioners initiating a conversation about assisted dying with a patient demonstrates how strongly noble Lords feel about this issue. As a minimum, it is clear that many noble Lords do not feel that the Bill’s current drafting is sufficient. Although we have heard some counter-arguments during the debate, it is now incumbent on the noble and learned Lord, Lord Falconer, to set out in some detail his reasons for allowing registered medical practitioners to initiate these discussions.
Following on from that, there was one particularly moving contribution to this debate: the speech from my noble friend Lady Monckton. The case she made from her own family perspective in support of my noble friend Lord Shinkwin’s Amendment 162—to prohibit the topic of assisted dying being raised with someone with Down syndrome or a learning disability—was one I found especially powerful. I hope that the noble and learned Lord, Lord Falconer, will acknowledge that this is a particularly sensitive aspect of the issue which needs to be addressed.
There are two additional issues I should like to pick up. I was particularly interested in the amendment tabled by the noble Baroness, Lady Grey-Thompson, which requires a minimum 48-hour delay between diagnosis and any conversation about assisted dying. Given the shock that a patient will feel when receiving a diagnosis that could make them eligible under the Bill, it seems right and appropriate that they be given the space and time to process the news before facing the question of potentially ending their own life. Is the noble and learned Lord, Lord Falconer, willing to consider how that degree of sensitivity might be incorporated into the Bill—or, failing that, into guidance—to ensure that patients who receive some of the worst news they will ever hear do not immediately feel the need to address a choice as momentous and emotive as whether they wish to end their own life?
Finally, the amendments in respect of persons aged under 18 are worthy of the noble and learned Lord’s careful consideration. The Bill is designed to create a legal right for those aged over 18, not for children, so surely it follows that its provisions should not be raised with children. I therefore hope the noble and learned Lord will carefully consider the protections for children that the Bill could usefully incorporate.
My Lords, I thank all noble Lords who have contributed to this very important debate. As usual, I will limit my comments to amendments on which the Government have major legal, technical or operational workability concerns.
To begin, key concepts in Amendment 149, moved by the noble Baroness, Lady Grey-Thompson, are unclear. It will therefore be difficult to assess whether the duties have been discharged. For example, it is not clear who must co-ordinate and undertake the suggested multiagency assessment of support needs and who is responsible for ensuring that those needs are fully funded, so it may be impossible to demonstrate that these criteria have been met.
Amendment 152, tabled by the noble Lord, Lord Moylan, seeks to prohibit registered medical practitioners or any other health professionals from raising the subject of provision of assistance under the Bill. If passed, this would be inconsistent with the discretion currently afforded to the registered medical practitioner in Clause 5(2), which makes it clear that a registered medical practitioner may exercise
“their professional judgement to decide if, and when, it is appropriate to discuss the matter”.
This amendment would therefore create conflicting duties and may lead to confusion about whether a registered medical practitioner can raise the issue of assisted dying.
Briefly, as it is of no interest to other Members of the Committee, but it is surprising that, with all the legal advice offered to her, the noble Baroness has not noticed that there is a consequential amendment in my name in the same group—which I referred to—which deletes subsection (2), since I too have spotted that there is an inconsistency and I have dealt with it.
I thank the noble Lord for his comments. It is still worth raising these matters in this context to avoid any confusion.
Amendment 162, tabled by the noble Lord, Lord Shinkwin, would mean that a registered medical practitioner could not raise assisted dying with any person with a learning disability, including people with Down syndrome, unless they raise the subject themselves. This restriction would apply to all persons with a learning disability, including where the person has the capacity to make a decision to end their own life.
The purpose of Amendments 205, 207 and 207A, tabled by the noble Baronesses, Lady Monckton and Lady Grey-Thompson, appears to be to prevent a healthcare professional raising the subject of the provision of assistance with a person who has a learning disability or autism, unless that person has a family member, independent person or guardian present. Under Amendment 207A, both a family member and an independent person would need to be present. These amendments do not draw any distinction between varying levels of individual need. As drafted, a registered medical practitioner would be required to establish in all cases that the person does not have autism or a learning disability before raising the subject of an assisted death, unless a family member or independent person is present.
Amendment 200C, tabled by the noble Baroness, Lady Berridge, would mean that no person could raise the provision of assistance with those under the age of 18, whether online or otherwise. Amendment 209, tabled by my noble friend Lady Goudie, prohibits any adult with a duty of care or responsibility for a person under 18, including but not limited to guardians, social workers, educators or carers, from raising the subject of assisted dying “with such a person”. These amendments would be extremely difficult to enforce, due to their breadth and ambiguity. They may, for example, prohibit parents or guardians from discussing the broad issue of assisted dying with their children.
Finally, I bring to noble Lords’ attention that amendments discussed here, including Amendments 149, 162, 200C, 205, 207, 207A and 209, could give rise to legal challenge on ECHR grounds, in particular challenges brought under Articles 8, 10 and 14. These amendments would require reasonable and objective justification to comply with ECHR obligations.
I make no comment on the other amendments in this group. However, as noble Lords will be aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments may be needed to provide consistent and coherent terminology throughout the Bill.
My Lords, for the benefit of the Committee, I will let noble Lords know that when we have heard from my noble and learned friend Lord Falconer of Thoroton, I intend to bring the Committee to a conclusion. It would be wiser to wait to start the next group next week, rather than to get half way through it and have all the problems about who was or was not here, and so on. If colleagues are thinking ahead to the next group, it will not be called until next week.