Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Sarah Olney Excerpts

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Sarah Olney (Richmond Park) (LD)]

I beg to move amendment 273, in clause 29, page 17, line 33, at end insert—

“(1A) Regulations under subsection (1) must specify that the following information is collected for each assisted death—

(a) the person’s age,

(b) the person’s gender,

(c) the person’s ethnicity,

(d) the postcode of the person’s address at the time of their death,

(e) whether the person had a disability for the purposes of section 6 of the Equality Act 2010 (Disability), and

(f) any illness, disease or medical condition the person had that was deemed terminal for the purposes of section 2.”

[The Chair]

With this it will be convenient to discuss the following:

Amendment 274, in clause 34, page 20, line 43, at end insert—

“(2A) The Chief Medical Officer’s report must include an analysis based on information—

(a) provided to them under section (Collection of information on assistance),

(b) information required by regulations made under section 39B of the Births and Deaths Registration Act 1953 (Regulations: assisted dying).”

This amendment is linked to Amendment 273 and NC10 and provides that the Chief Medical Officer’s report must include an assessment/analysis of information received under that new clause.

New clause 10—Collection of information on assistance—

“(1) The coordinating doctor must, following the provision of assistance under section 18, record information on—

(a) how the process of providing assistance was carried out,

(b) the time taken from the ingestion or administration of the substance provided under section 18 to the time of death, and

(c) any complications or unforeseen circumstances that arose in connection with the ingestion or administration of the substance and how those were managed.

(2) The record created under subsection (1) must be made available to the relevant Chief Medical Officer.

(3) In this section ‘coordinating doctor’ includes a doctor authorised by the coordinating doctor to provide assistance under section 19.”

This new clause provides that the coordinating doctor (or other doctor authorised to provide assistance) must collect certain information on the provision of that assistance.

[Sarah Olney]

It is a pleasure to serve under your chairmanship, Mrs Harris.

We have discussed throughout the course of the Committee the importance of collecting good information on the operation of assisted dying, and I know that hon. Members will agree that understanding the impact of legislation on society, for better or ill, helps us to improve its operation and respond to any urgent issues that arise. To this end, my amendments and new clause specify that a few more pieces of information must be recorded by the doctor who facilitates an assisted death.

Recording the method, the time taken and noting any complications is not overtly onerous on the co-ordinating doctor, and these three pieces of information could be crucial to uncovering which drugs are most appropriate. It will also enable us to understand more broadly whether those who have assisted deaths are having good deaths. It would be deeply unfortunate if we were to introduce a mechanism intended to help those likely to die in great pain or with indignity, only for that mechanism to offer some patients an alternative kind of painful death. One of the ways we can learn which methods of assisted death are the most humane is to make careful notes of any complications and the time taken to die.

It is also critical that we understand the wider social picture of this significant social change, in particular with regards to equality considerations. Are there groups who are excluded from assisted dying? Are there groups who are over-represented? Should we treat one group’s over-representation as a demonstration of good access to the service, or should we see it as a failure elsewhere in the system? We can understand how those who face discrimination in our society are impacted by the Bill only if we collect this data, which is what my amendment proposes.

Dr Jamilla Hussain said that

“racism is also a specific issue within palliative care. We did a survey, post-covid, of staff across the nation working in palliative care. More than 1,400 people responded. The vast majority—more than 80%—were white British, but 40% said that they had witnessed or experienced racism within the end-of-life care sector. For ethnic minority groups, that is much higher. That leads to mistrust. I work in Bradford. We have lots of patients who are ethnically diverse in the hospital. Almost every week, one of the first things I have to reassure patients about is that I cannot legally do anything to shorten their life. This is front and centre of the fear for those patients and we see it all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 190, Q247.]

As Dr Hussain highlighted there and at other points, racism exists in the palliative care sector. If we want to tackle discrimination, recording ethnicity and requiring the voluntary assisted dying commissioner to analyse the data would help.

Dr Sarah Cox told us:

“We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]

The consequence of failing on palliative care provision will lead to more people feeling they have no choice but to end their life early.

Collecting data would also help us to understand the legislation’s impact on women. I am pleased that the Committee agreed to the amendments proposed by the hon. Member for Lowestoft concerning training on coercive control and domestic abuse. The amendment also highlights the intersection between misogyny and the abuse of assisted dying, about which the hon. Member for Bradford West has spoken so compellingly at different points. Understanding how the law affects and interacts with women in particular seems to me to be relevant and necessary. If we are to ensure that the law operates in a way that is good for women, we need to collect this data from patients.

[Lewis Atkinson]

I entirely agree with the hon. Member for Richmond Park and I absolutely expect this information to be collected. My observation, as ever, is that I do not think we should put the exact details in primary legislation. The powers are clearly there for the Secretary of State to specify what information should be collected. I am struggling to find it, but I know that my hon. Friend the Member for Spen Valley will move an amendment to require the Secretary of State, when they make provisions and issues guidance under the Bill, to consult the Equality and Human Rights Commission and others in respect of protected characteristics.

--- Later in debate ---

[Kim Leadbeater]

As has been alluded to by various Committee members, I fully support the intention behind amendment 273, but I think it will be covered already. I have mentioned my amendment 500, but amendment 455 is probably more pertinent. It looks at the annual report that the assisted dying commissioner would produce, which makes reference to protected characteristics, and sets out that any other such data can and should be collected under regulations.

I am therefore confident that that report would encompass the points made by amendment 273, and that reference is made to the analysis that is covered by amendment 274. I feel confident that the intention will be met by the introduction of the voluntary assisted dying commissioner, but I wholeheartedly agree that data collection is a fundamentally important part of the process.

[Sarah Olney]

I want to make a couple of further points in response to some of the those raised by Members. First, I have looked at amendment 500, which the hon. Member for Spen Valley directed me to, and I thank the hon. Member for Reigate for showing it to me—her record keeping is much better than mine. I was going to say that amendment 500 does not cover a lot of the areas that I have raised, but the hon. Member for Spen Valley has just referred me to amendment 455.

However, it is important to say that amendment 455 refers only to “protected characteristics” under the Equality Act 2010. I specified particular characteristics in amendment 273 in response to some of the evidence that we received. In particular, I included the person’s age in response to evidence that we received from Together for Short Lives, which represents children’s hospices including Shooting Star in Richmond. It had specific concerns about the issue of assisted death being raised with young people under 18, and that is why I specified that. I also included gender and ethnicity, which I mentioned earlier, and that came through very strongly in a lot of the oral evidence that we received.

To address the point made by the hon. Member for Sunderland Central, I did not hear sexuality being raised as a risk factor at any point. Obviously, members of the LGBTQ+ community experience a great deal of discrimination, but I have not heard it raised as a specific risk factor for assisted dying, which is why it is not on the list. I have included the person’s postcode because I do not know a better way of assessing whether someone is from a low-income background. I particularly draw the attention of hon. Member for Spen Valley to that characteristic, because it is obviously not protected under the Equality Act, so I remain really concerned.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

For the avoidance of doubt, socioeconomic status would have been a protected characteristic under the Equality Act, were it not for the previous Conservative Government.

[Sarah Olney]

I thank the hon. Lady for that useful intervention. As I say, socioeconomic status is not currently a protected characteristic under the Equality Act.

[Danny Kruger]

I think the hon. Member for Penistone and Stocksbridge meant the previous Conservative and Liberal Democrat Government—just to be strictly accurate.

[Sarah Olney]

I expect the hon. Lady did, but since none of us in the room was a member of that Government—I think—or indeed Members of Parliament at the time, I do not know how hon. Members want me to respond to that. It remains the case, I believe, that socioeconomic status is not currently a protected characteristic under the Equality Act. If anyone wants to reopen that debate, I am sure there would be an appetite for it.

[Kit Malthouse]

Obviously the hon. Lady is a London MP, but I gently point out that particularly in a London context—and in other urban areas—someone’s postcode is actually a very poor indicator of socioeconomic status. I represented central London as a London Assembly member for eight years and, in large parts of central London, there is social housing in the same postcode as extremely expensive houses running into the many millions.

[Sarah Olney]

I know: the Barnes ward in my constituency is one of the most unequal wards in the country, so I fully appreciate the right hon. Gentleman’s point. As I say, that is the socioeconomic indicator that I have for now, thanks to the failings of our predecessors to include it in the Equality Act, but I am open to amendments on Report if anybody has something more compelling. I do think that it really matters that we look at the socioeconomic status of people who are seeking an assisted death, and I welcome feedback—and, as I say, further amendments—on how that particular part of clause 29 could be improved.

Lastly, I included whether someone has a disability, which obviously has come up many times in the written and oral evidence. That is why I specified those characteristics in response to the evidence that we received, and why I am keen to press amendment 273 to a vote.

Amendment 273 agreed to.

[Danny Kruger]

I beg to move amendment 446, in clause 29, page 18, line 9, at end insert—

“(4) The Secretary of State must, by regulation, specify the data sets which must be made available by the Registrar General for England and Wales.

(5) Any regulations made under subsection (4) are subject to the affirmative procedure.”

This amendment requires the Secretary of State to specify in regulations the data sets which are to be made available by the Registrar General for England and Wales.