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Official Report: search what was said in Parliament

The Official Report is a written record of public meetings of the Parliament and committees.  

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Dates of parliamentary sessions
  1. Session 1: 12 May 1999 to 31 March 2003
  2. Session 2: 7 May 2003 to 2 April 2007
  3. Session 3: 9 May 2007 to 22 March 2011
  4. Session 4: 11 May 2011 to 23 March 2016
  5. Session 5: 12 May 2016 to 5 May 2021
  6. Current session: 12 May 2021 to 1 May 2025
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Displaying 162 contributions

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Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

As I said, we open up the debate in order to allow that to happen, but I have been very clear that my bill cannot legislate for that investment to be made. That is, ultimately, a decision for the Government.

Nonetheless, the debate that we are having exposes where there are deficiencies in access. The quality of palliative care is seen to be high, but access to it can be problematic. There is a need for additional investment, and I would hope that that is what results, in this context.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I would say the contrary. As I said in response to the convener, there are practices—for example, withdrawal of treatment, refusal of food and liquids and the double effect of palliative sedation that you are referring to—that are happening at the moment. The extent to which patients are involved in those discussions is questionable, but in a sense, they are, to me, variants of assisting a person to die.

There are people who will draw a distinction between those activities and what is set out in my bill, but I go back to the point that, at the end of life, the more options one has and the greater the say and the amount of control one has, the better able we are to say that the approach is patient centred. I cannot see that the bill makes things more complicated or costly; what it does is provide for both patients and medics a degree of protection that does not necessarily exist at the moment.

We touched earlier on the divergence in views that can sometimes arise between patients and some, if not all, family members. It is not difficult to think of situations in which, if some family members felt that the medication, having been increased to manage pain, had also accelerated death, medics might find themselves coming under scrutiny or being accused of acting inappropriately. That would be intolerable from their perspective, because I feel very much that they would have been acting in the patient’s best interests. However, the more the patient is engaged in that discussion, the more medical professionals will feel that they have a safeguard and are not leaving themselves open to such accusations.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I would not necessarily say that there are vast differences between the bills—they are both predicated on a terminal illness mental capacity model—but you are right that features of Kim Leadbeater’s bill are different from mine—notably, in relation to the six-month prognosis period. My bill requires an advanced progressive terminal illness to be diagnosed.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I know, but they can travel to Switzerland at £15,000 a pop and probably months earlier than they would need to, because they need the physical capacity to do so—

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

On that point, it is probably worth reflecting that the model that is described in my proposal involves a medical practitioner delivering the medication. Should there be a change of mind, the medication would be returned and disposed of. That might in part be what the RPS is responding on. However, there are other jurisdictions where the medication is mailed out and it is left to the patient to decide when to take it.

Your facial expression was the same as mine was when I first heard that, but it does not appear to have given rise to concerns. In a sense, though, it is a model in which those particular costs are not necessarily incurred. If the society has more detail that it wants to share with me, I will be interested to see it.

12:15  

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

Having put on the record my gratitude to CHAS, I want to do the same with the RCN, whose insights have been very helpful and constructive. It is right about the involvement of nurses. If we look at the Australian experience over time, we see that nurses have tended to become increasingly involved in the process instead of doctors, and that approach seems to have worked very effectively. I certainly acknowledge that.

I have a difficulty with the idea of a stand-alone service. I think that it is far better for provision to be set in existing health and care settings, for the reasons that I set out about continuity and the pathway of care. We really do not want to take somebody out of such settings and move them into a different pathway at a point when they are, potentially, at their most vulnerable.

A different case has been made about having a so-called opt-in model, rather than an opt-out model, and I suppose that I am more sympathetic to that. If a person can undertake the assessment processes for assisted dying only after going through the training, they would, in a sense, opt out by not going through that training, whether or not they have a conscientious objection. Therefore, there is probably more of a debate to be had around an opt-in model rather than around a stand-alone service, if I am being honest.

As I have said, the safeguards, the transparency and all the rest of it, including continuity of care for the patient, work best if they are seen as being seamless with other forms of palliative, hospice and social care.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

As I said, the savings that would be made would be specific to each individual’s circumstances. Also, you are presupposing that people who access assisted dying would otherwise have lived on for a further year, which does not tend to be borne out by the evidence. This is an option that is accessed invariably in the final days, if not short weeks—or possibly months—of life rather than years. If we try to calculate savings on the basis of something that will depend on the age of the individual, the treatment that they are receiving and when—and possibly even where—they access it, it is difficult to see how you could come up with a figure.

Many of those who are making the argument about savings most strenuously are simultaneously making the argument that the bill will put untold pressure on the finances and capacity of the NHS and care services, and it seems kind of wedged in between the two.

As I say, it is difficult to see how I could have come up with figures that would have been in any way accurate or subject to a range that would have made them—

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

That is an interesting argument. Funding can unlock many things, but it cannot unlock everything. The degree to which medical professionals engage with the process might be about workload—for example, we spoke to practitioners in California who limit the number of assisted deaths that they help with or are involved with simply in order to manage their workload. It is not that they conscientiously object some of the time and not at other times.

You will need medical professionals to go through the requisite training in order to be able to carry out the process. That will take time, but their numbers will grow. The question is about the point at which you introduce the service and whether you are conscious of the fact that, although you do not want to delay it unduly, you do not want to go too early when the system is not ready and you do not have enough individuals in the system to provide the service where it is needed.

When folks try to access the service late on, it might very well be that—as we see in other jurisdictions—they pass away before they are able to do so, even where they can access doctors and get the diagnosis and all the rest of it. In other instances, when people have made the application but the palliative care that they receive absolutely meets their needs, the vast majority of people will not access assisted dying; a sizeable proportion of even those who are looking to access it ultimately do not do so, for a variety of reasons. As I have said, funding will not necessarily resolve that issue, although some might make that argument. I do not think that it will make a huge amount of difference in the early stages, because you need time to build confidence and persuade more medical professionals that it is something that they can and want to get involved with.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I think that CHAS also made a point about an organisational opt-out, as opposed to an individual one. I have difficulties with an opt-out that covers an entire organisation, because an organisation is made up of many individuals. This needs to be about choice—not only the choice of the patient but the choice of the individual practitioner not to be involved. That is why the conscientious objection is a key component of the safeguard.

In relation to the hospice sector, I have heard it referred to that there are different views on the matter. Some argue that, in some respects, it opens up potential opportunities for donations in wills and in other ways. However, that is not happening. It is difficult to tell. The reassurance that I tried to give at the Hospice UK conference was that, in places such as Australia and New Zealand, different hospices do different things. There are those that do not provide the service themselves but do not stand in the way of practitioners coming in and providing support to their patients.

A problem might arise if a patient enters a hospice and is not clear on what the policy is from the outset, which could lead to problems further down the line. However, different models of operating exist that allow hospices to try to reflect the views of their staff—those who might be directly involved in the delivery and others who are in a hospice environment, which I recognise is a wider community. That is why, going back to my response to Ms Thomson’s question, I note that the more discussions are happening in that community, the better.

There has been a bit of a perception that the palliative and hospice sector is implacably opposed to a change in the law. I know that many in the sector are, but also that many are not and that others are simply asking questions about the implications of the change for them. It is very difficult to make definitive assertions about what will happen. We do not know whether the bill will be passed or what shape it will be passed in should it get to the amending stages. The fact that those discussions are happening is the only way to provide as much reassurance as possible that issues, whether around funding or staffing, can be addressed.

In response to Mr Marra’s line of questioning, I noted that there is a separate issue around the overall quantum of funding that is going into the sector. One of the benefits of the debate is that it has shone more light on that. What happened back in 2015 was that, as soon as the Parliaments here and at Westminster rejected the bills, that debate disappeared like snow off a dyke. There is a causal link between the debate that we are having around the palliative and hospice care sector’s needs at the moment and the introduction of the bills. I hope that we will pass the bill, but we need to ensure that we do not lose the opportunity to ensure that the Governments here and at the UK level meet the funding needs, whatever they are.

Finance and Public Administration Committee

Assisted Dying for Terminally Ill Adults (Scotland) Bill: Financial Memorandum

Meeting date: 17 December 2024

Liam McArthur

I can see that there is a cost attached to the time that is going into those discussions and that preparation. It remains to be seen whether Parliament will agree with the general principle that there should be a change in the law and, if it does, what will emerge at the end of that. There is a limit to how much we can prepare for something that we will not see the detail of until some time down the track.

I suspect that, in the medical profession, changes to legislation, best practice or whatever are discussed and pored over on a routine basis. Whatever the cost is, it is likely to be lower if you have prepared and had a chance to discuss it instead of finding that there has been a change in the law or guidance and you are having to react and respond to that from a standing start.

I do not know how to measure that cost. One of the advantages that I have had in developing the bill is that I have been able to have those conversations—I suspect that everybody round this table has had them—with parliamentary professionals, hospices and others with an interest in the issue over the past two or three years, and that will continue to be the case. The fact that that preparation and those discussions are happening is benefiting us, but it is also benefiting those who are most directly affected.