Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Marie Tidball Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Dr Fellingham, you had your hand up.

Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are

“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,

and

“Less able to engage in activities making life enjoyable, or concern about it”.

What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.

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

Q Looking ahead to our next panel, are you aware of any serious concerns being expressed by disabled people about the Australian assisted dying laws and any risks they might pose to this group? It would be very helpful to hear any recommendations you have with regard to building safeguards into the law that we are scrutinising.

Dr McLaren: Throughout the roll-out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand.

Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.

[The Chair]

Dr Fellingham, do you wish to add to that?

Dr Fellingham: Just briefly—I will go back to the point that I was making in my introduction. It is extremely important to keep in very sharp focus that the law you are proposing in the UK is similar to the laws that exist in Australia and New Zealand and most of the laws in the United States, but it only applies to people who are terminally ill, and therefore people who only have a primary disability, a primary mental health condition, a primary dementing condition or a non-terminal condition such as anorexia or a whole host of other conditions, who are found eligible in the more permissive laws, simply would not be able to be found eligible. It is really, really important to keep it in very sharp focus that this law is only for terminally ill people.

[Dr Tidball]

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating:

“For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

--- Later in debate ---

[The Chair]

Thank you. I call Marie Tidball.

[Dr Tidball]

Q Just to clarify, that word is in clause 2(3). I will ask a question of Professor Tom Shakespeare first and then, if I may, I have a follow-up of Dr Miro Griffiths. Tom, why is it so important that disabled people have a choice? I made it very clear when I voted for the Bill on Second Reading that I would only do so because it was not about intolerable suffering but was limited to six-month terminality. From the perspective of disabled people, can you expand on that point and share any research that has been done in jurisdictions where equivalent legislation is now in place?

Professor Shakespeare: I would say that it is very important that the Bill is for terminal illness only. It should give a sense of safety to disabled people. In jurisdictions like Oregon, California and Montana, which Chelsea has mentioned, we have not had an expansion from terminal illness to, as it were, suffering. If you do not carry suffering in the Bill, you will not get into the situation that Canada got into.

I gave evidence because Canada was seeking—some people were seeking—to expand the coverage of their Act to all disabled people. They did so by referring to the Canadian charter of rights and freedoms and to the word “suffering”. They said, “Look, lots of people are suffering, not just terminally ill people”. Therefore, it is very important that it is only terminally ill people who are covered by this Bill. That, as I say, should give disabled people some support.

As you know, Marie, we talk about choice and control as being the principles of independent living. Disabled people should have rights over their lives. This applies to people who are disabled, yes, but terminally ill primarily. That is why they should have this law, which gives them choice and control over their lives. They are going to die anyway, but it removes the fear and reality of a difficult, unpleasant and undignified death.

[The Chair]

Dr Griffiths, do you want to add to that?

Dr Griffiths: This issue highlights a fundamental flaw with the Bill, which is the nonsensical division between a terminal illness and what constitutes being a disabled person. Section 6 of the Equality Act 2010 states that a disabled person is somebody who has a “physical or mental impairment” and the impairment

“has a substantial and long-term adverse effect”

on their

“ability to carry out…day-to-day activities.”

If you have a terminal illness, it is likely that you will be defined within the terms of what is outlined in section 6, so it is a fundamental flaw, because disabled people will be incorporated within this.

The issue also highlights this arbitrary nonsense about a six-month perspective. What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?

These concerns highlight fundamental flaws, but they also play into what a key issue: the campaigning that will continue after the Bill, if it is to succeed. You will get people who will say, “Why not five months, or seven? Why not other conditions that are not being highlighted in our current discourses?”

--- Later in debate ---

[The Chair]

I will come back to Marie Tidball, but I want to make it plain to the panel that, while questions are being directed to specific panellists, if anybody wishes to come in on something, do please indicate.

Chelsea Roff: To your question, Mr Gordon, about whether this is the safest Bill in the world, I know that due care has been taken to make that happen. One of my biggest concerns about clause 2 of the Bill is that it makes no distinction between a person whose illness can become terminal if they refuse or cannot access treatment—for instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country, and it often co-occurs with eating disorders. The way this is written would not prevent someone who chooses to stop taking insulin from qualifying as terminal.

In the US, we are seeing voluntary stopping of eating and drinking used to circumvent the terminal illness safeguard. I will quote the American Academy of Aid-in-Dying Medicine, which is the professional body:

“Legally, there is nothing in the letter of the law…that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.”

It describes this as a “legal gray zone” that would “essentially eliminate” the terminal illness criteria. There is nothing in this Bill as written that would prevent that, and we have to look at the letter of the law, because it expands through interpretation, not just amendments.

[Dr Tidball]

Q This question is for Professor Tom Shakespeare and Dr Miro Griffiths. One of the amendments I am backing would establish an advisory council on the impact of the Bill on disabled people, because I am passionate that we monitor the impact on that group of people, should the Bill pass through Parliament. What structure or mechanism do you think could work to facilitate that?

Dr Griffiths: This plays into a broader issue around the reporting mechanisms associated with the Bill. I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services.

This goes back to a point that Tom made. While we may see popular opinion within disabled people’s communities, it is worthy of note that no deaf and disabled people’s organisation—these are organisations that are representative of disabled people who engage critically with the issues facing disabled people’s communities—has been in support of this. I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.

Professor Shakespeare: I think the council is a very good idea. It should reflect the range of views, as Miro says. In Oregon, disabled rights advocates have not, as I understand it, opposed the Act that they now have. Of course, it is mixed, but some disability groups are definitely in favour. There is a difference between organisations of disabled people and disabled people on this. Politically, the disability rights community are against assisted dying—they always have been. That does not mean that they reflect what ordinary disabled people want, and that is what is important. I think you should be interested in what people want, and they want this.