Terminally Ill Adults (End of Life) Bill

Baroness Finlay of Llandaff Excerpts

Friday 9th January 2026 Lords Chamber

Finally, as the noble Lord, Lord McCrea, pointed out, there is some debate over the motivation behind the promoter of the Bill in another place choosing to abandon the original approach of asking judges to decide these cases in order to promote a panel. There are many people, including the noble Lord, Lord Pannick, who believe that that is an improvement. But it was reported, as the noble Lord, Lord McCrea, pointed out, that the promoter of the Bill decided to take that step because she had received advice from the Government that her initial proposal would place such strain on the court system that the Government could not support it. I ask the Minister at the Dispatch Box either to confirm or deny that report, and if it is the case that the Government gave advice to the promoter of the Bill, will that advice be shared with this House so that we can be better informed before we make any decision?

[Baroness Finlay of Llandaff (CB)]

My Lords, the noble Lord, Lord Carlile, has done us all a great service. Last night, it was clear that there is a view that some really major parts of this legislation need to be addressed and debated. This is absolutely one of those major parts. It is about where decision-making finally sits. The noble Lord has provided a clarity that could improve safety in relation to the Bill—I will not say to make it safer but to make it less unsafe—and that becomes important.

The scheme that the noble Lord has proposed would reinstate a court-based model that was previously welcomed when the Bill was introduced because of the clarity of decision-making that it provided. On the process of assistance with suicide or having an assisted death, we are not going to argue about the wording here now. That is not appropriate. The clauses relating to the specifics of the lethal dosage of drugs both make the death part of the process clearer and provide better governance oversight. The process also seems to provide some protection for NHS services by putting the decision-making outside healthcare, with clarity of the roles between the two.

I added my name to the amendment to strengthen the conscience clause, Clause 31, so that no registered medical practitioner is under any duty to perform a function in relation to this Bill other than those of notification and recording matters. This avoids eroding NHS clinical services and maintains the core duties and responsibilities of the NHS. It will be particularly important if legislation is passed in Scotland, because we need compatibility of the conscience clause between England and Wales and Scotland. The legislation currently going through in Scotland will have its draft conscience clause removed at the time that the Scottish Parliament goes to vote on it, because the provision of such a conscience clause is not a devolved matter. The exercise of conscience not being a devolved matter will require a statutory instrument passed from this House, or possibly even primary legislation, for it to be then included later in the Scottish legislation.

The noble Baroness, Lady Berridge, raised concerns about the wording of proposed new subsection (1) in Amendment 116. I wonder whether the noble Lord, Lord Carlile, would consider changing that to incorporate the amendment that I have tabled—the proposed new clause would replace Clause 3—over the assessment of capacity. This amendment was developed by the Complex Life and Death Decisions group at King’s; the national expert on mental capacity assessments sits as a key member of that group and as a professor at King’s College.

I hope the proposers of the Bill will recognise that proposed new subsection (2) in Amendment 116 provides very important minimum criteria that must be provided: questions that must be asked when such a decision is to be made. The court can certainly ask for them to be provided to it. It seems as if a panel would be discretionary over whether these criteria were looked at, and it would strengthen confidence in the decision-making to know that they were there, because it would provide transparency and consistency, and a process of appeal would be available. We know that no appeal system exists in the Bill as currently written in relation to panels agreeing to an assisted death being provided, and the real concern there is that these panels could eventually become something of a tick-box exercise under quite a lot of process. As has said been said before, those with a judicial background are not acting in a judicial capacity on the panels, whereas the proposal by the noble Lord, Lord Carlile, provides judicial capacity and processes.

The amendment that seems to be key is Amendment 120: its proposed new subsection (4)(b) would require a statement of medical fact, with the decision-making being taken by the court. Again, it will be much easier for people to provide a statement of medical fact than to feel that they are taking a decision over the provision or non-provision of lethal drugs. In proposed new subsection (5)(a), I hope that the doctor has to be on the specialist register for the specific condition of the patient—I seek clarification on that—or to have been a GP principal for longer than three years. It is important to be clear that this should not be a doctor who is at a training level, even if they have been a trainee for more than three years, because the ultimate responsibility sits with the consultant or the GP under whom they are training. There could be confusion over responsibility if this is not clarified.

On Amendment 120’s proposed new subsection (6)(a), can the noble Lord, Lord Carlile, confirm that it may be not the GP at all who is involved but a hospital consultant or long-term associate specialist who has been providing medical care? These might seem like minutiae, but we are in Committee and discussing amendments that can be changed, and I think it will be important to have that clarity.

It seems that proposed new subsection (5) in Amendment 426 seeks to provide additional security with a court-appointed medical expert. This proposal seems to protect us against going down the route that Canada has gone down. It seems to really attempt seriously to detect undue influence. Allowing interveners is very important; it is all part of the desire for there also to be an appeals process and of getting all the information.

I stress that there is a clarity between decisions about whether somebody is given lethal drugs to significantly shorten their life, accepting that a prognosis of six months is not much more than a guesstimate—in fact, it is a guesstimate—and the position that has been discussed over life support decisions. When a patient is on life support, the decision to cease that intervention is based on two potential factors: one is the futility of continuing with an intervention that is not achieving a therapeutic goal, and the other may be because the patient withdraws their consent for continuing that intervention in an informed way and has capacity to do that. That is fundamentally different from somebody providing lethal doses of drugs with the deliberate intention to shorten a person’s life—which may be by days, weeks or months, but may be by years. As has already been said, we all have experience of people given a very short prognosis that turned out to be completely wrong.

I have some questions for the noble and learned Lord, Lord Falconer. I know that he has already been given a large number of questions to answer, but I think it is really important. First, in 2024 he stated that

“family judges are … completely unsupported”

and that the family justice system is—I think I can quote correctly—“literally crumbling”. Were these the reasons behind the removal of the court oversight when the Bill was considered in the other place?

Secondly, in discussing these proposals with officials, what assessment has been made of the volume of cases outlined in the impact assessment being handled by this system, and what provision has been made for recognising that the numbers in the impact assessment are almost certainly inappropriately low? The data from Australia, New Zealand and other places has shown that, by year three, the uptake will probably be about 10 times higher than written in the impact assessment, because the impact assessment was based on data from quite a long time ago, when the Oregon system was instigated.

Thirdly, what costing has been undertaken for each of the models—the model of the panels as put in with the different numbers that might be involved—and what consideration has been made for a costing over this model?

I ask the Minister: what budget has been put aside to fund the system, whichever model is adopted, and what option appraisal has been undertaken over the safety of individuals and the ability to identify coercion with a higher degree of probability than currently exists and to identify abusive relationships?

As I have said, the financial costs for each model, tested against the impact assessment numbers, appear unrealistically low. I think we all look forward to the questions being answered.

[Baroness Hayter of Kentish Town (Lab)]

My Lords, given the number of questions that have been put to the Minister—and, indeed, to my noble and learned friend and to the mover of this amendment—I wonder whether it might be useful if we now move to the Minister and the others to answer some of these questions. There are so many that it would really help the Committee if we could hear some of the answers.

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Moved by

[Baroness Finlay of Llandaff]

26: Clause 1, page 1, line 12, at end insert—
“(e) has had their needs fully assessed by a multiprofessional specialist palliative care team, and appropriate care provided to the extent necessary to enable them to decide whether such care would affect their wish to end their life,”Member’s explanatory statement
The amendment ensures that all terminally ill persons seeking to take up assisted dying support have had their needs assessed by a multiprofessional specialist palliative care team and met to the extent necessary to enable them to decide whether such care would affect their wish to end their life.

[Baroness Finlay of Llandaff (CB)]

My Lords, we move on to a group of amendments that are extremely important and, in some ways, complementary to those in the previous debate. Autonomy is the lodestar of the Bill. The amendments in this group are designed to reinforce and respect that patient autonomy; they do not block access to an assisted death but aim to ensure that people have accurate information to make informed decisions. For a decision taken, people must have three things, whatever that decision is: accurate information, the capacity to make the decision and to be making it voluntarily. Those are the fundamentals of respecting a person’s autonomy.

These amendments are to ensure that the patient has the opportunity to know what is available. They do not force a patient to be looked after by a palliative care team, and they do not stop a patient from proceeding with an assisted death. There is clear evidence from studies that underserved groups have poor access to palliative care, and there is poor understanding generally of what palliative care is and can do. General doctors often do not understand palliative care, so how can an assessing doctor give good, accurate information to a patient if they themselves have a deficit in their knowledge? It is worth noting that in a five-year medical training course it has been estimated that the average time spent on learning about palliative care is only 20 hours, and only recently has palliative care come into the finals questions. So there are thousands of doctors out there with almost no education in palliative care.

Many patients and the public do not understand palliative care either. A significant number think that assisted dying is palliative care or hospice care, while others think that palliative care simply hastens death. Sadly, misunderstandings are widespread. When patients access appropriate specialist palliative care, the desire for a hastened death is often alleviated, and they experience an improvement in quality of life that they never believed possible. But that does not apply to everybody. The role of this amendment is simply to give everyone the best opportunity to access the care that they need, whether or not they continue to pursue an assisted death and whether or not they decide to take up the opportunities that may be revealed by such an assessment. The processes relating to an assisted death can occur in parallel with, but not as an integral part of, palliative care provision.

There has been concern that palliative care teams could not cope with a sudden influx of referrals, but currently any palliative care team prioritises a patient who is in such despair that they want to die. That is basic care, a core part of the job. Palliative care will not turn its back on patients who are in despair; teams want to deliver gold standard care.

In Oregon, 92% of assisted death patients are recorded as being enrolled in hospice services. Palliative care needs assessment gives patients options to make an informed decision. The patient may conclude that there are other options that they have not been aware of and want to try, or that they simply want to pursue an assessment for an assisted death. Evidence from Canada has shown that some patients seeking referral for medical aid in dying are actually asking for palliative care; they seek assisted dying as a way in which to get their problems sorted out.

A palliative care needs assessment must always be non-judgmental. I stress that this is not a bad faith amendment; it is to ensure that patients know what they could have and are making an informed choice, respecting their autonomy.

For every decision in life, we want the best information, whether it is knowing that the house we are buying is not full of dry rot or that a car or sales loan has not been mis-sold to us. The Bill’s processes must ensure that applicants are fully informed. This is not a costly option. There is high-quality evidence that specialist palliative care reduces the chance of dying in hospital and increases the cost effectiveness of home and hospital-based care for those with a poor prognosis.

Therefore, the adequate provision of services to ensure that every patient seeking an assisted death can have their needs assessed will decrease, not increase, costs to the NHS. Home specialist palliative care is associated with reduced costs of nearly £8,000 per person and increased quality life-adjusted years. In the hospital sector, costs also reduce but only by about £6,500 per patient, again with increased quality-adjusted life years overall. Provision of specialist palliative care to ensure, wherever the patient is, that they have the option of accurate information with which to make their decision has been estimated to reduce system expenditure by over £800 million per annum.

Unfortunately, I fear that the Bill’s proposers have rather misunderstood multidisciplinary care working, and I am afraid that my friend and colleague Dr Sarah Cox, who I respect enormously, has indeed been slightly misquoted. As the noble Baroness, Lady Gerada, said in our last debate, modern care is delivered by multiprofessional teams, which come together around an individual patient, comprising doctors, nurses, physio, occupational therapy, social work, et cetera, depending on the needs of that individual patient. Patients often communicate more readily with the lowest paid in the team, such as the carers, to whom they feel they can talk freely, as there is not the power differential that exists between patient and doctor. That multidisciplinary and multiprofessional team reviews and monitors things together. That is quite different to bringing a panel of three different disciplines together specifically to make one decision and then move away from it without that continuity of knowing people. It is important that we are clear what we mean in clinical care.

In the hospice, I used to always have the care assistants as part of our weekly multidisciplinary review of patients. They had valuable insights and much to contribute. A mandatory assessment would ensure that people knew what was available. It is up to the person to decide whether to try one route or another.

Why make this mandatory? Unfortunately, the amendment to the Health and Care Act 2022, which I pushed for very hard and was glad to see come in, and which stated that palliative care is a core service, has not resulted in commissioners adequately commissioning services, in part because they themselves are ignorant of what to commission. If assessment is mandatory, commissioners must make sure that patients seeking an assisted death have a service that can provide a proper needs assessment and give them information. The patient can choose whether to try or not try.

I know that my noble friend Lady Hollins has an amendment about this, and there is indeed a definition in an amendment that has also been tabled in relation to what specialist palliative care is. To try to summarise that very quickly, it is about having the appropriate specialist skills in every setting, with advice available at all times of the day, every day, equipment and medication available, and a point of contact so that people can go back and explore and discuss things as they think more about the complexities of their situation, and they can access the support that they need.

As my colleague, Dr Rachel Clarke, pointed out when she gave evidence previously, the moment of people having a diagnosis of severe life-limiting illness is their time of peak vulnerability. Is the patient’s request for an assisted death a knee-jerk reaction to a new diagnosis that terrifies them? Have they been plunged into a suicidal depression that might pass? Might a desire to die be replaced by a desire to live when they receive the patient-centred care that they need? Is a malign partner lurking in the background, putting insidious unvoiced pressure on the person to believe that he or she would be better off dead? In New Zealand, we hear about patients seeking an assisted death when they are clearly caught up in a cycle of despair and hopelessness, while actually they want and need to know what is available but often the services are not there for them.

I hope that my colleagues who have tabled amendments in this group will speak to them, and I have tried to lay out a background template for why the mandatory ability to have an assessment of need is important. I beg to move.

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[Baroness Finlay of Llandaff (CB)]

In the time that is left, I would have loved to respond to all the points, but I am not going to go through them in detail. I am deeply disappointed in the response from the noble and learned Lord, Lord Falconer, because it seems that he has not taken on board some of the really important points that were made. I believe that the amendment spoken to by the noble Baroness, Lady Brown of Silvertown, is the beginning of a very important statement. I believe that we must—not just will but must—come back to this on Report, with all those people who have shown an important investment in time to consider the needs of the individual who is in such distress that they want an assisted death. We cannot accept that some people are potentially going down that road simply because care is not available. With that, and with the commitment to come back later, I beg leave to withdraw the amendment.

Amendment 26 withdrawn.