Chamber and committees

I will certainly support amendment 256. As I said, there is an issue about proportionality with amendment 257. There are examples of similar provisions in other jurisdictions for reasons to do with guaranteeing access. I am more persuaded of the rationale for allowing those who are in the sector to develop the model. My evidence to the committee at stage 1 acknowledged that the service will look and feel different in different parts of the country because of the circumstances that each area will need to deal with. That is already happening daily in health and care.

I understand the motivation behind amendment 257 and I understand why the RCN and others seek that provision. As it stands, the amendment may be disproportionate, but I would certainly be happy to work with Fulton MacGregor ahead of stage 3 to see whether something can be worked up that might address those concerns.

Again, I reject the reference to “assisted suicide”. We can have a debate at another point about the difference between the mental state of someone who is seeking to take their own life and someone with a terminal illness who is seeking to take control over that process.

What I have said, and what is set out in the bill as it stands, is that this relates to someone with an “advanced and progressive” condition. Although I understand the argument for setting a prognostic timeframe—and I welcome the fact that we are having this debate—the committee concluded from the evidence that it took that doing so would be problematic. On that basis, I do not support the amendments on that, and I urge Bob Doris not to press them.

On amendments 145 and 207 by Brian Whittle and amendments 25, 30 and 31 by Rhoda Grant, I fully support the principle of a terminally ill adult having available information and options explained to them and having in place appropriate care plans—including for palliative care, where appropriate—if they wish. That is why section 7(1) would require the assessing doctors to explain and discuss the person’s diagnosis and prognosis, available treatment, palliative and other care options, and the assisted dying process and the substance that would be used. It is also why I lodged amendment 29, which aims to ensure that palliative care discussions include available hospice care, symptom management and psychological support.

As Sandesh Gulhane suggested in his intervention, greater use of advanced care plans would be welcome and would help to increase the likelihood of people having their wishes respected, but it is important that such plans remain voluntary. I am therefore not supportive of adding to the eligibility criteria in the ways that are proposed in the amendments, which would include a person having an anticipatory care plan or a palliative care plan in place. Doing so would risk adding a barrier to a terminally ill adult who is otherwise deemed eligible being able to access assistance because, for example, they did not want such a plan or did not wish to have palliative care, which can be a matter of personal choice.

I get the point that you are making. Ideally, one would want people to have as much advance planning, including in terms of palliative care, as possible. However, making such plans part of the eligibility criteria is highly problematic, for some of the reasons that I have touched on. I will come on to address those in more detail. Making such plans part of the eligibility criteria could result in a terminally ill adult, who would otherwise be eligible but has a short time to live, dying before such a plan could be put in place.

The Scottish Government has also highlighted the chief medical officer’s confirmation of a

“change in terminology from ‘anticipatory care planning’ to ‘future care planning’”,

while noting—and I agree—the following:

“The process of developing a future care plan should be holistic and person-led, with a focus on shared decision-making. As such, setting out that a person must have a plan in place which must include a plan for palliative care in order for them to be eligible for an assisted death goes strongly against this person-led ethos, given that some people may not want palliative care for a number of reasons.”

Regarding Pam Duncan-Glancy’s amendments 219, 221, 222 and 228, I fully support people with terminal illnesses having full access to social care. However, I am concerned about adding a requirement for a person to have such care in place in order to meet the eligibility criteria for assistance. I do not agree that a person should be ineligible for an assisted death if they have not accessed social care or if they have been on a waiting list to access social care for six continuous months. Adding such a requirement risks adding a barrier to a terminally ill adult who is otherwise deemed eligible to access assistance.

Regarding Ms Duncan-Glancy’s amendment 227—

I do not happen to agree with that. As I go through and respond to the amendments, the rationale for that might become clearer.

Amendments 143 and 144 offer alternative options. The former suggests a prognosis period of three months. As well as my general concerns about setting a prognosis period, I add that there are no examples from around the world of a three-month prognosis timeframe. Not only would it risk eligible adults being unable to access the choice in time, it would risk—as I think Daniel Johnson rightly pointed out—placing pressure on them to make a hurried decision. I know that Mr Balfour would not wish for that to happen.

A six-month period, as suggested by amendment 144, is certainly more realistic, albeit that I offer the same general reservations about setting a timescale for prognosis. Amendment 144 also proposes adding, for the avoidance of doubt, that a person should not be considered terminally ill if their

“condition can be controlled or substantially slowed down by medical intervention”.

I remind colleagues—this perhaps addresses some of what Pam Duncan-Glancy was saying—that the definition that is set out in the bill states that

“a person is terminally ill if they have an advanced and progressive disease, illness or condition from which they are unable to recover and that can reasonably be expected to cause their premature death.”

I remain of the view that the definition of terminal illness as set out in the bill is appropriate and captures the appropriate cohort of people.

I am going to make a little more progress, Ms Duncan-Glancy.

Adding terms such as “substantially slowed down” is likely only to add to confusion.

Although I am sympathetic to the provision in amendment 144 that states that,

“For the avoidance of doubt, a person is not terminally ill if ... their illness is a consequence of voluntarily stopping eating and drinking”,

I believe that that is already covered in the existing definition. Indeed, it was not raised with the committee at stage 1.

Daniel Johnson’s amendment 4 similarly seeks to define terminal illness by reference to a six-month time period. I know from my discussions with him that he was keen to open up a debate on that, and I think that he has been successful in doing that.

As I have said, other jurisdictions generally operate with prognosis periods of six months, albeit that there are often slightly longer prognosis periods for neurological conditions. It is therefore entirely right that we are having this discussion. I have set out my concerns about how that might work in practice, but I am interested to hear the debate on it and to see where Parliament eventually lands.

I am happy to work with colleagues ahead of stage 3 on workable amendments that might deliver the intention, but it was important to put on record why I opted for the approach in the bill. I think that it is consistent with decisions that Parliament has taken previously on similar issues. I will listen to what colleagues have to say and, as I said, I am open to having further discussions about this.

I will take a brief one.

As the chair of the cross-party group on palliative care, Bob Doris will be aware that the debate on such care was nothing like as prominent as it has been since I announced my intention to introduce the bill. That bears out the evidence that the committee heard from witnesses in Australia that, as a result of the conversations and the safeguards that are in place on assisted dying, engagement with palliative care improves. Simply asserting that there is a zero-sum game here would be inappropriate and is not borne out by the evidence.

Elena Whitham made the point that discussions on palliative care need to be voluntary. Tying that to the requirement for there to be a plan—whether it is an anticipatory care plan or a palliative care plan—runs the risk that someone who would be eligible under the criteria would be unable to access the choice that they wish to make.

I am using you as an intermediary between me and Mr Doris. The approach needs to be consistent with the GMC guidance. Consistency across other areas of healthcare is important in reducing the scope for confusion or uncertainty, so I am happy to look at that. Putting guidance in the bill seems potentially problematic, but I am happy to work with Mr Doris and Mr McMillan on how to express that better, if that is felt to be necessary.

I am sure that that guidance will be updated as understanding of coercion develops. Putting it in the bill might be problematic, but I understand Bob Doris’s and Stuart McMillan’s points, and I am happy to work with them ahead of stage 3.

I thank Bob Doris for making that point. That was not the implication of my remarks, but it is very helpful that he set that out, and I take that point in the spirit in which it was made.

There are a number of areas in which provisions are contingent on other things happening. I would be very cautious about proceeding on that basis. I am sure that we will have debates about that in future groups, but I have set out my concerns in relation to that point.