Terminally Ill Adults (End of Life) Bill

Baroness Finlay of Llandaff Excerpts

Friday 13th March 2026 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

143: Clause 4, page 2, line 39, at end insert—
“(f) ensuring the licensed assisted dying service records and analyses the death process, including substances used and complications;(g) retaining all source documentation for a minimum of ten years;(h) supporting retrospective and prospective research on all aspects of assisted dying;(i) recording, collating and analysing all data and reporting in detail at least annually on the anonymised information to monitor the operation of this Act and reporting annually on it to Parliament (see section 49).(4A) No member of the office of the Commissioner can be employed by, have financial or commercial relationships with, or act in a voluntary capacity for, any agency providing assisted death.”

[Baroness Finlay of Llandaff (CB)]

My Lords, I will now speak to this rather large group of amendments, many of which were simply consequential, so I have withdrawn those to focus the debate. I ask noble Lords who may have questions to kindly allow me to explain the whole process rather than interrupting the sequence.

We took extensive evidence in our Select Committee and had many briefings critical of the panel process as written in the Bill. The Royal College of General Practitioners clearly stated that any legislation must ensure that:

“Any assisted dying service should be seen as a standalone … service … and … not be deemed core GP work”.


It is clear that:

“Any assisted dying service would need to be separately and adequately resourced and … not, in any way, result in a de-prioritisation of core general practice, or palliative care services”.


The promoters of the Bill themselves have said that the voluntary assisted dying service must be clearly defined and not complicated. The model proposed here would meet those essential criteria and improve safety, providing legitimacy with an expert multidisciplinary panel. Bureaucracy is simplified; it avoids burdening family or treating for clinicians, and it provides statutory separation between assessment and the process of causing death.

The effect of the scheme is to provide clarity by strengthening the process so the request goes directly through a genuinely multidisciplinary panel involving rigorous assessment, strong conflict of interest rules, clear statutory guidelines and clear norms for the collection of data—and, in the event of doubt, there is potential court involvement. This creates a higher level of professionalism and greater legitimacy for the person. There is also a clear framework for the panel procedure. Unlike the proposed ADR panels that we previously debated in the Bill, these panels are genuinely multidisciplinary across relevant specialties. The major effect of this is to remove individual doctors assessing in isolation and the risk of “doctor shopping”. There is also a new scheme for licensing and regulating assisted death services, as well as strict regulation of the lethal substances used to bring about an assisted death. This would decrease the risk of dispensing errors, as the process of dispensing approved lethal substances is closely monitored.

These amendments move the provision of accurate information to the patient and the assessment of eligibility up front in the Bill. The assessment is all undertaken by a defined group with expertise across different disciplines. Clinicians looking after the patient, irrespective of whether they support or do not support the provision of assisted dying, would continue with their duty of care to the patient and family throughout the process. Thus, the patient would continue to have their usual clinicians look after them, as always, while in parallel they could be assessed for eligibility against the criteria to be established in a statutory code of practice.

Let me explain: Amendment 143 would require the independent commissioner to support the new multidisciplinary panel workings, retain records for at least 10 years, support research and report to Parliament. Amendment 266 would ensure the panel members’ independence. Amendment 192 would signpost the person to the panel, because an assisted death is not a medical treatment. The person can obtain accurate, up-to-date information including, in Amendment 232, how to initiate the process.

Amendments 333 and 334 describe the panel’s make-up and its process. The panel would have a lawyer, a social worker or psychologist, a specialist in end-of-life care—all of whom would have at least 10 years’ clinical experience—and an administrator, plus a consultant specialist in the disease of the person and, if required, the option to co-opt up to seven members. Their statutory duties relate to licensing, or declining, the provision of lethal drugs or poisonous substances. They can refer to the High Court if in doubt. Amendment 233 would clarify that two panel members conducting a documented hearing must go to the patient.

The proposed new clause in Amendment 615 explains how the assisted dying service that comes into operation when a person’s assisted death has been approved would execute its functions in complying with a person’s wishes, including the safe transport of dispensed substances. Amendment 551 describes a neutral professional of experience who, once an assisted death was approved, could help the patient by ensuring that all correct processes were followed, deal with complications, collect all data and notify relevant persons of the death. This would avoid the difficulty of a doctor being tied up waiting for the person to die after ingesting the lethal drugs. The Oregon data shows that sometimes this can be prolonged.

Amendments 552 and 702 would determine a designated regional pharmacy to link to the assisted dying service to improve safety in the dispensing and transport of lethal drugs or other poisons and the disposal of any unused substances. Amendment 552A in the name of my noble friend Lady Hollins improves my Amendment 552 by seeking to ensure compliance with regulatory safeguards.

Amendments 704 to 706 relate to the limits on regulation-making powers, and Amendment 707 covers devices. We do not know what these devices are, but they are referred to in the Bill. Amendment 698 would require all lethal substances to be compliant with MHRA regulations and the Misuse of Drugs Act. Amendments 556 and 643 would require the GP to be notified of the process. Amendment 654 would ensure completeness. Amendments 667, 760, 761 and 767 would make it clear that the involvement of a health or social care professional in the assisted death service was separate from their health or social care employment and that their employer must know of their involvement. This is a separate service that must not jeopardise the care of other patients.

However, Amendment 710 to the clause on the regulation of approved substances would give effect to the recommendation of the Delegated Powers and Regulatory Reform Committee, on which I sit—although I should say that I am not speaking on behalf of the committee—to remove the most sweeping of the Henry VIII powers in the Bill. I do not consider the amendment of the noble and learned Lord, the sponsor, to my amendment to be adequate. Others may wish to comment.

All my remaining 56 amendments in this group are consequential and have been written to ensure that there is clarity throughout the Bill as to the effect of these changes. This is not vexatious.

[Lord Falconer of Thoroton (Lab)]

I am grateful to the noble Baroness for describing her scheme. Could she explain to the House what eligibility requirements would need to be satisfied in order to give a certificate and where one can find them in her amendments? Secondly, could she explain what the role of the High Court is?

[Baroness Finlay of Llandaff (CB)]

My Lords, first, I asked noble Lords to wait until I had completed. Secondly, I apologise to the House if I cough and my voice gives up in the process—so be it. Thirdly, if these amendments were all written into the Bill, which is what I am trying to do, the noble and learned Lord would see that the eligibility criteria would remain as he has put them in the Bill.

Let me summarise. A person wanting to seek an assisted death would be signposted to the panel for their area. The panel would give them accurate information and, if they wished to apply, they would be helped to ask for their clinical record to be available to the panel to assess all information. Normally, two panel members would meet the person, without pressure, listen to them, assess capacity and, if they agreed, advise the panel, who would decide whether to issue a licence to end life. The navigator would then make sure that lethal drugs were available to the person at the time of the person’s choosing, collect them from the designated pharmacy and deliver and oversee the whole process, documenting it carefully. If the person changed their mind, unused drugs would be removed by the navigator. If the person died, the navigator would verify, not certify, death and ensure that all who needed to be informed were duly and sensitively informed of the death. But throughout the initial information-seeking and assessment, the period of reflection and the assisted death being arranged, the person’s health and social care would continue in parallel—it would not be diverted away from its core role in care.

Let me illustrate. Thirty-six years ago, a GP referred a distraught young man whose prognosis, as estimated by the GP, a surgeon and an oncologist, was about three months. The GP said, “He is the most clear-cut case for euthanasia I have ever seen”. The man was in total pain and desperate for lethal drugs, and, with his youngest child only six weeks old, his care was challenging, particularly in the first fortnight. Eleven years after that visit, and after many periods of complex care, David phoned me. His beautiful young wife was dying of advanced cancer. By then a wheelchair user, he and his three children were with her in the hospice as she died.

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[Lord Markham (Con)]

I thank noble Lords. I totally appreciate that the noble Baroness’s intention in all this is to try to make the process as robust as possible and she gave a very moving example of why she believes in it. But surely the people best placed to give evidence and understand the situation or the capacity of the person involved—their circumstances and whether there is any coercion—are the very people who she is suggesting should not be part of that panel, namely the health professionals and doctors involved. I am trying to understand why the noble Baroness would not want to involve those professionals who are closest to the case.

[Baroness Finlay of Llandaff (CB)]

Unfortunately, I am not sure that the noble Lord heard me right. The panels that we discussed previously did not include the treating clinicians—they were to look at the evidence brought to them. In the panel structure that I am proposing, the panel would have access to all the patient’s notes—with their permission—all their investigations, the full assessment of capacity and all other aspects that would be happening in routine practice during the patient’s care.

Concerns over the patient’s family and behaviours during the course of their illness would be documented in the clinical record, along with the criteria on which the diagnosis was made, and that clinical record would be available to the panel. That is why I have suggested that there needs to be an expert with knowledge of the specific disease afflicting the person who is seeking an assisted death. There are many rare conditions in medicine; common things occur commonly, but rare things are not that uncommon, and it is quite common for there to be a misdiagnosis that may lead to the patient making a decision based on the fallacy that they have an illness they may even have been treated for. We heard evidence in a previous Select Committee that, at post-mortem, around 5% of people are found to have died of something different from what had been recorded on the death certificate, suggesting that misdiagnosis is, sadly, not a very rare occurrence.

[Lord Markham (Con)]

I was specifically referring to:

“The person’s health or social care professional cannot participate in any part of the assessment for a person’s request of an assisted death”.


That is the point I am trying to understand. Yes, unfortunately there are cases of misdiagnosis—the 5% that noble Baroness mentioned—but 95% of the time these people are the best qualified to make an assessment, so I am trying to understand why we would not want them involved.

[Baroness Finlay of Llandaff (CB)]

They will not be involved in the judgment as to whether the person is eligible for lethal drugs; they are providing their clinical expertise and knowledge. It is the panel who, separately, independently and through a process that can be completely scrutinised and documented, would make that assessment. That would mean that the patient’s care could not be contaminated by pressures causing the doctor to be burnt out, financial pressures on the system in which that patient is being treated, or even administrative pressures, such as the patient’s discharge becoming difficult and the hospital needing beds because patients are being treated in corridors—which we know is happening all the time. It provides separation and a degree of clarity over the assessment and judgment.

[Baroness Cass (CB)]

To clarify, whether we take the system proposed by my noble friend or the original system with the series of doctors, it is very unlikely under any circumstance that the clinician who is providing primary care for the patient will also be in one of those formal roles specified by the Bill. The reason is that, as we have discussed, people will need to opt in to that kind of role and have very specific training for it. Given the number of people who are predicted to be required to grant an assisted death, that will be quite a small cadre of clinicians. Therefore, although I understand the aspiration of the sponsor in the other place, and certain Members here, for there to be close integration between the team providing normal care and those involved in the dying process, in practice I do not see how that would be feasible in either system.

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[Lord Falconer of Thoroton (Lab)]

It is my fault for not dealing with it adequately. Of the two other clauses that apply, one is about advertising and is concerned with advertising into England and Wales. Nobody wants the advertising of assisted death services. We have drafted it on the basis that if you do it from Northern Ireland into England and Wales then there should be a means of enforcing that. The other is detriment to employment rights. Employment law covers the whole of the United Kingdom, which is why this applies to that one as well.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am grateful to all who have spoken in this debate. I am concerned that some things that were laid out in my scheme appear to have been misinterpreted. I would like to get those out the way first.

I did not say that the panel must have seven people who approve an application. I pointed out that two people would meet the patient and go to the person seeking an assisted death, but the panel could be “up to” seven people. It could co-opt people as it felt necessary to make a decision.

There is a fundamental question here as to whether this is within or separate from NHS services, which is the request that has been made by the royal colleges. It is of concern that this remains unanswered. I am most grateful to the noble Lord, Lord Stevens, for having laid it out so clearly and clarified it. It is not only about funding but about how people behave within a service and what they do.

On the statement about palliative care—I am sorry, the noble and learned Lord seems to be laughing; does he find this amusing?

[Lord Falconer of Thoroton (Lab)]

No.

[Baroness Finlay of Llandaff (CB)]

On the question of palliative care and stating that it is about a good death, palliative care is far, far more. When the patient dies, that is an end point of care which has been aimed to improve quality of life right the way through.

I have already provided evidence to the Committee that an optimum time really should be a minimum of knowing the patient for three months to be able to have an input, and care should go on to those who are bereaved after the death. That is quite different from seeing the term “euthanasia”, which was translated into a “good death” and is a single point in time. Palliative care is used to people having a fluctuating wish to die, to seeing people who are in despair and to having to deal with some very complex problems, which was what I tried to illustrate with my patient, who gave permission for me to tell his story.

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[Lord Jackson of Peterborough (Con)]

As usual, the noble Lord makes a very apposite point and reinforces my arguments.

Time is pressing, so if I can beg the indulgence of your Lordships’ House, I will just develop slightly my support for the points that my noble friend Lord Shinkwin made at the beginning of this debate. The danger that terminally ill patients, accustomed to trusting medics who care for them, will sense that they should do what their doctor is telling them when they are only suggesting the option of assisted suicide is greatly heightened where, for instance, learning disabilities are in the mix. My noble friend made reference to Ken Ross of the National Down Syndrome Policy Group, who was quite right when he said:

“People with Down syndrome have a very complex and unique speech and communication profile. They are highly suggestible. Even someone wearing a uniform could suggest a position of authority to them and something they should show acquiescence to. The acquiescence bias risk from people with Down syndrome is extraordinary.”


This was mentioned by my noble friend.

“They could have a seeded view around what they think that person wants to hear and talk about without fully understanding the position”.

I assume that by “a seeded view”, Mr Ross means that the idea is planted in their mind, by a doctor mentioning assisted suicide, that this is what that doctor would prefer. Others, more expert, might put me right.

Other similar points were made by my noble friend Lady Monckton, in her superb speech, about the dangers of someone such as her daughter Domenica, who has Down syndrome, being advised by a doctor new to her that a terminal condition might mean it is best to have her life ended—without any legal obligation to discuss this with parents, other family members or someone independent, as the amendments from the noble Baroness, Lady Grey-Thompson, propose. As she said, fear, terror and a total lack of comprehension would sit alongside her daughter’s highly suggestible disposition.

The Commons, in fairness, did ensure that the Bill now has extra safeguards for those with learning disabilities, but these are focused on training and an advocate from the first declaration—far further down the road than the preliminary discussion. Actually, the experience in Australia is that training around the specific bespoke issue of coercion is very limited, and that needs to be looked at. Perhaps the noble and learned Lord will address that in his concluding remarks. This is when framing effects will occur and will be the starting point for vulnerable people misunderstanding the options or feeling pressure. By the time an advocate is in place, the person they are working for might have a fixed idea, which the advocate will not want to ride roughshod over. Clause 5 therefore needs strengthening to address this inconsistency, which is a key concern of experts in learning difficulties.

Hence the question that some noble Lords may be asking, about the need for prohibition, particularly where Down syndrome and learning disabilities are in play, because these might be the patients most likely to provoke cost concerns but least likely to discern that this motivation, not their best interest, is the main reason for raising the possibility of assisted suicide. I have to say that that would be a minority of cases, and I am not making that point about the vast majority of clinicians.

In conclusion, it is for these reasons that I strongly support Amendment 162 and others in this group.

[Baroness Finlay of Llandaff (CB)]

My Lords, I have two amendments in this group. We have heard a lot of comments about the real world and what is actually going on now, today, out there in healthcare. It will be very interesting to hear how the noble and learned Lord, Lord Falconer, responds to all the criticisms and to the way the inherent dangers in Clause 5 have been highlighted.

My Amendment 201 concerns children. A little boy with advanced malignancies said to me, “I'm going to die when my goldfish dies”. He went on to talk through what he wanted when he was dying and how he would play football in heaven with another boy who had died recently. Not long after, his goldfish was found floating. My strenuous attempts to resuscitate his goldfish failed, and he gently died soon after.

That was some years ago. Today, children live off the internet, not just off what they hear from other children. They know about the debate on this Bill—some raise it in “Learn with the Lord” sessions. If a child is asking questions about this, they must be able to express their fears if they are already ill. They often speak with remarkable frankness. Children’s awareness is phenomenal. They deserve gentle, honest planning of their care that also explains why they are ineligible for assisted suicide. Hence my wording, but the wording of the noble Lord, Lord Rook, provides much clearer guidelines for clinicians involved, to allow them to listen but in no way to hint that the child will be eligible.

Assisted suicide is not a medical treatment. It falls outside McCulloch and Montgomery rulings, hence my Amendment 159. As has been said, if a doctor raises assisted death unprompted, the implication is that this is something you should consider—a tacit implication that this might be your best option. Addressing the comments by the noble Baroness, Lady Hayman, it is a doctor’s duty of care to sensitively explore with open questions and careful listening, to discuss whatever the person wishes to discuss at their initiation. That is patient autonomy and control. Mencap, the Association for Palliative Medicine and the Royal College of Psychiatrists have all warned how patients’ trust gives doctors a dangerous ability to steer decisions if the suggestion comes from the doctor.

Listening with undivided attention is crucial in gentle, honest communication in the face of patients’ anguish. Patients hang on to our every word, so suggesting it as an option signposts them in that direction. It abandons suicide prevention duties under the Mental Health Act and the state’s duty under Article 2 of the European Convention on Human Rights. The amendments overall have a common theme of making the autonomy of the patient paramount in these discussions, their being able to raise assisted death in their own time, at their own pace and at their instigation. I hope these amendments will be taken heed of.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I thank my noble friends Lord Jackson and Lady Monckton—whose speech was quite spectacular—for raising the example of DNRs. It is very good example when we are talking about who can raise assisted dying in preliminary discussions.

I want to give a very brief illustration. When my father was in hospital, five different medical professionals came into his room and took us, his family, aside, to get him signed up to a DNR. He did not really want that. It might have philosophically been the right medical thing to do, but he was not in the right place. He did not want to be asked, and certainly not five times by five different medical professionals. It left a rather bitter taste in our mouths, because when we were able quietly, as a family, to have that discussion with him, he did have a DNR. We were fortunate to have that time, rather than him having something put at the end of his bed with the Sainsbury’s bag.

This group of amendments is really important. They are all similar, saying that we need some guidance on who can raise the discussion and under what circumstances. If we really believe that patient autonomy is important, then something should come from this group of amendments and be in the Bill.