Terminally Ill Adults (End of Life) Bill

Liz Jarvis Excerpts

Friday 16th May 2025 Commons Chamber

[Dr Tidball]

I will make progress, out of respect for all those on both sides of the House who wish to make a speech.

The clause flowed directly from evidence that we heard from oral witnesses, including leading disability scholars and disability policy experts. In conjunction with amendment 75, which is before us today, those with autism, along with a learning disability or a mental disorder as defined under the Mental Health Act 1983, would all qualify for the services of an independent advocate. Amendment 75, which defines a learning disability, would also apply to clause 7, which provides for specific, up-to-date training for registered practitioners on reasonable adjustments and safeguards for autistic people and people with a learning disability.

In Committee, I was grateful for the support of my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) and, to my delight, the hon. Member for East Wiltshire (Danny Kruger) for these independent advocates, and for the Committee’s unanimous support for clause 44, which would set up the disability advisory board. That advisory board entrenches the voices of disabled people in the Bill, embedding a long-term and iterative structure for it to report on the Bill’s implementation and its impact on disabled people to the Secretary of State. Crucially, the board must consist of disabled people and representatives of disabled people’s organisations.

To build on those clauses, amendment 91 expands the duty to collect additional information about whether, immediately before death, the person seeking assistance had a disability as defined in section 6 of the Equality Act 2010, other than the disability amounting to terminal illness as defined in the Bill. So often, control is taken away from disabled people in all sorts of circumstances. I passionately believe in inclusive healthcare for disabled people. Together, all those measures will create a solid foundation to enable disabled people to have a strong voice when advocating for themselves about their choices on end-of-life care and, importantly, a seat at the table in shaping the monitoring of the Bill and providing continued scrutiny and accountability.

To conclude, there were many moments in Committee when I reflected on how I would want to live a good death, but the most poignant was when Julie Thienpont described the death of her terminally ill husband, Guy, who sought an assisted death in Spain:

“Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, ‘Don’t be afraid.’ He said, ‘I’m not afraid,’ and he winked at me just before he closed his eyes.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 258, Q334.]

May we all have the opportunity to choose a good death, wearing our cowboy boots with the love of our life by our side.

[Liz Jarvis (Eastleigh) (LD)]

I am grateful for the opportunity to contribute to this vital debate. It is imperative that we get the Bill right and that the protections and procedures are watertight. I thank my constituents on both sides of the debate who have written to me.

I support amendment 4, tabled by my hon. Friend the Member for Harrogate and Knaresborough (Tom Gordon), which would allow those with neurodegenerative diseases to be eligible for an assisted death if they are within 12 months of dying. Nigel Hartley MBE, the chief executive officer of Mountbatten Hampshire hospice in my constituency, told me that palliative care and assisted dying are not and should not be at odds with each other. Palliative care can provide incredible support. I am very glad that this debate has reopened the national conversation about funding for palliative care. However, as I know from my personal experience with my mum, who died last March after a seven-year struggle with Alzheimer’s, sometimes palliative care can only go so far. Amendment 4 recognises that those with neurodegenerative illnesses deserve the same compassion, control and dignity as others at the end of their lives. By extending the timeframe to 12 months, they will be given more control over their ultimate decision.

I support new clause 10, which extends the right for any professional to opt out of providing assistance under the Bill, and extends the protections to a broader range of professionals who may be involved.

I also support amendments 59 and 62, which relate to training on domestic abuse. Those amendments are critical to ensuring that the co-ordinating doctor can identify signs of domestic abuse. The inclusion of training enhances the Bill’s protective framework, as no medical professional without specific and up-to-date training on domestic abuse will be able to serve as a co-ordinating doctor. Importantly, amendment 74 defines “domestic abuse” using the language of the Domestic Abuse Act 2021, which explicitly includes coercive, controlling and economic abuse.

Amendment 63 removes any ambiguity about the scope of eligibility, and makes it clear that only terminal illness qualifies under this legislation. That clarity is essential to maintaining public trust and ensuring that the Bill is not open to misinterpretation or misuse. It can be incredibly difficult for people with disabilities, and their families and carers, to get their concerns across—they can often feel unseen and unheard—so the amendment is vital.

Finally, I pay tribute to the hon. Member for Spen Valley (Kim Leadbeater) for her work on the Bill and her tremendous courage, determination, willingness to engage and resilience. As others have said, the decision before us is fundamentally about whether we believe in an individual’s right to have choice at the end of their life. I know what my mum would have said.

[Rachael Maskell (York Central) (Lab/Co-op)]

I rise to speak to amendments 26, 45 and 46, which stand in my name and the names of other Members. I am grateful for their support.

On amendment 26, hospice care is not a formulation of care, but a clinical setting where palliative care is delivered, so I trust that the House will accept my amendment in the interests of accuracy.

On amendment 45 and consequential amendment 46, the literature points to complex clinical decision making—which the subject of the Bill is—being safer if it happens in the context of multidisciplinary teams, as was advocated for by the professional bodies at the very start of the process. Such a context screens out unconscious bias and provides for clinical accountability with robust interdependency. It demands a deliberative process and it safeguards clinicians and patients with more secure outcomes. I have talked extensively to the professional bodies and clinicians, and I have read the academic evidence. In drawing on best practice, this amendment would provide such safeguards and ensure that the patient is at the heart of the process.

Members will know from the evidence given to the Bill Committee that the initial assessment is the most important part of the process, and clinicians and professional bodies do not understand why psychiatrists and social workers are being placed in a quasi-judicial role, rather than being used for their clinical and social expertise. The process makes the wrong assumptions. Without the amendments, there is a predication towards an assisted death, rather than the Bill recognising the insecure position that someone with a terminal illness finds themselves in and the safeguards that are required. There are many reasons for suicidality, and they should be explored.

In clinical practice, should someone determine that they want to end their life for whatever reason, a clinician would seek to ensure that the right professionals were involved in the care of the person, with exploration, diagnosis and, where necessary, therapeutic and pharmacological interventions.