Terminally Ill Adults (End of Life) Bill

Lola McEvoy Excerpts

Friday 16th May 2025 Commons Chamber

[Kim Leadbeater]

My hon. Friend is absolutely right. We keep coming back to the word “choice”. It is about choice for patients and terminally ill people, but it is also about choice for medical professionals and others.

Because of the unintended consequences, I cannot support amendment (a), but I am confident that new clause 10 and new schedule 1 provide robust protections for employees, regardless of their choices about participating in the provision of assisted dying services.

[Lola McEvoy (Darlington) (Lab)]

Would my hon. Friend mind elaborating on the detail of the transferring of medical records? It is my understanding that someone can request their own medical records as a patient.

[Kim Leadbeater]

The patient could request information, but so could doctors and other healthcare professionals. It would be wrong if people were not allowed to share that information if it was requested, even if their employer did not want them to do it.

I turn now to new clause 11 and consequential amendments 64 and 65, which will ensure that the Bill is workable by making provision about the replacement of the co-ordinating doctor or the independent doctor where they are unable or unwilling to continue to carry out their functions in the Bill. The doctor may be ill or on holiday, retire, or have a change of personal circumstances.

--- Later in debate ---

[Sir Edward Leigh (Gainsborough) (Con)]

I wish to speak to new clauses 16 and 17. Rather than giving my own views, I think that powerful testimony on behalf of someone who actually runs a care home should be heard by the House. I want to quote, as briefly as possible, Dan Hayes, who runs the Orders of St John Care Trust, which runs care homes in Lincoln generally and in my constituency:

“we believe that the Bill as drafted is flawed, and the risks to older, vulnerable people, residing within social care environments are substantial.

We believe that any assumption by those drafting the final legislation that it is not intended for use by those living with conditions regarded as part of the ageing process, would be mistaken. Any legislation would be immediately tested and assumed to be accessible to such a cohort of people.

To that end we believe that in order to provide the necessary protections to such a vulnerable part of our society, the Bill must be explicit in its reference to older people living in residential services.”

That is why these new clauses are so important. He continues:

“The Bill must take account of the current unfairness and instability at the heart of our social care system, and question whether such legislation can be introduced whilst such problems exist.

The Bill must recognise that an individual health/social care professional’s ability to remove themselves from the process of Assisted Dying is so difficult, that specific exclusion of the care home sector should be a feature of the Bill. In any case, organisations, and sites, should be given the ability to exclude themselves from the act of an assisted death without prejudice to their approval as providers of services to the state.”

We have experience of that, with regard to Catholic adoption agencies. There is a real risk that some care homes may feel they have to withdraw from this sector. I will carry on quoting:

“Those that fund their own care pay substantial sums, often saved for over a lifetime—including property wealth. These savings will have been set aside for retirement and to pass on to loved ones. Instead, they are used to fund the costs of their own residential care, and to substantially subsidise the state.

We see the real prospect that those that might fit the criteria for assisted dying under the Bill, but have no wish to accelerate their death, would feel an immediate dilemma between prolonging their own lives, and the future quality of life of their loved ones. For illustrative purposes, the six-month period stated within the current Bill would equate to between £25,000 and £40,000 of expense borne by an individual paying for their own residential care in the current system.

Failings in the system mean that older people who should not be in hospital are held there, causing a burden to the NHS, and Local Authorities face an ever-growing proportion of funding needed to support social care, without a proportionate increase in funding from central government.”

[Lola McEvoy]

Will the right hon. Gentleman give way?

[Sir Edward Leigh]

I wish to be mindful of other people, so I will proceed and make this one simple point on behalf of care homes. Mr Hayes continues:

“During the pandemic, we saw the appalling attempts at a widespread use of ‘Do Not Attempt Resuscitation’ arrangements for older people. This is a clear demonstration that an existing broken system places a lower value upon the lives of older people than of others.”

This is the important point:

“Relationships within residential care for older people are both professional and intimate. Carers, Care Leaders, and Service Managers are all competent health and social care professionals, but they are also friends and confidantes of those that live within social care services. The relationships are familial in the sense of contact for hours each day and the extension of support to ordinary, everyday issues outside the scope of normal healthcare professionals.

Our employees deliver loving care and build relationships in a way that residents come to depend upon and take comfort from. Such relationships are key to excellent care provision, and these important relationships enhance and prolong lives by providing a sense of purpose and place to older people.”

I have been around these care homes. They are fantastic places, with such love and such care for the most vulnerable in society. My Hayes then continues:

“In such a setting, it renders the ability for an individual to refuse to partake…as useless.

In an environment such as a care home, there is no way in which a professional could be fully ‘separated’ from assisted dying, should a resident they work with closely seek to enquire about or make a request.

Imagine a scenario where an individual living in social care is at the point where they will be provided with the approved substance to bring about their own death: In a care home, this is likely to be in their own room, which will be in close proximity to many other older people who live within that setting. It will be commonplace and understandable that the magnitude of the event will mean that the individual will wish to have company and comfort up to and immediately before/during the period in which the substance is taken.

A request for the company of a care professional will create a substantial moral dilemma for that person, profoundly so if they are individually opposed to Assisted Dying.”

That is the choice that these loving care workers will have to make—that would be the pressure on them. He goes on to say:

“Even where they are not, it will mean that they will intimately witness the death of someone with whom they have a strong bond, with that death having come about through facilitation, rather than naturally.”

Imagine the pressure on the workers in that care home.

--- Later in debate ---

[Tom Gordon]

I will make progress.

Let me speak to the reality of my amendment with a story from a constituent who does not wish to be named. She wrote to me about her brother, who died at age 58 from MND. Prior to his diagnosis, he was strong, healthy and, as she put it, a lot of fun. He was a great family man, but it was dreadful to watch his illness progress, and it had a profound impact on the family. It took 18 months of effort, worry and deep distress before he finally passed away. He wanted to have control over the time of his death, knowing what was to come. My constituent wrote:

“A difficult subject for most of us to contemplate, but in his particular case the possibility of assisted dying would have given him much comfort.”

[Lola McEvoy]

Will the hon. Member give way?

[Tom Gordon]

I will make a little progress, as I was in the middle of a quotation. It continues:

“Unless you are actually affected by something as desperate as MND, you cannot understand what it really means to have such an option.”

My constituent is right. We can debate legal safeguards, ethics and precedents all day in this Chamber, but for those who are living with devastating diseases, this is not theoretical; it is personal, it is urgent and it is real.