Terminally Ill Adults (End of Life) Bill

Lord Rook Excerpts

Friday 13th March 2026 Lords Chamber

[Baroness Monckton of Dallington Forest (Con)]

My Lords, Amendment 205 is in my name, as well as those of the noble Lord, Lord Carlile, and the noble Baroness, Lady O’Loan. I declare an interest as founder of Team Domenica, and as the mother of a young woman with Down syndrome. As several of my points have already been covered by other noble Lords, I will be brief.

My amendment is simple and proportionate. It reflects the concern I raised at Second Reading: it is incomprehensible that people with learning disabilities will not be allowed a family member or, in the absence of a family member, a learning disability nurse or qualified practitioner to be with them when a doctor initiates the conversation about assisted suicide. People with learning disabilities may chronologically be adults, but many are still children who lack understanding of abstract principles. It is true that Clause 5(2) specifies that a doctor must exercise

“their professional judgement to decide if, and when, it is appropriate to discuss”

assisted suicide, but I am not satisfied that that provision is sufficiently strong. My amendment would provide an additional layer of protection for this vulnerable group, many of whom have a limited understanding of the concept of death and dying and would therefore be panicked and frightened. This combination of fear and lack of understanding would be, emotionally, absolutely devastating.

As we have heard, there is also—I see this in my own daughter—a desire to please, which is a way of seeking to belong. My daughter is also terrified of doctors, hospitals, dentists and anything medical. I dare not imagine what it would be like for anyone with a learning disability to be in a situation of having a conversation about killing themselves, probably in front of a doctor who they may never have even met, without a family member present. Yes, the Bill requires that there is mental capacity and a clear, settled and informed wish to die, but assessing capacity for people with learning difficulties is complicated on so many levels. I cannot begin to imagine how it would be done. Would it be through an easy-read leaflet with diagrams? It does not even bear thinking about.

I acknowledge—I know that this will come up—that not all families are perfect and that malign family dynamics are a reality, but I suggest that the greater threat would come from a process that fails to accommodate the specific vulnerabilities of people with learning disabilities. I find this lack of understanding extraordinary, but then, people with learning disabilities are so often ignored and forgotten. As my noble friend Lord Harper has already pointed out, during Covid, people with learning disabilities had “do not resuscitate” notices put at the end of their beds. Then came the clinical frailty scale, with nine categories going from category 1, meaning “fit”, to category 9, meaning “terminally ill”. The guidance was to deny those in categories 7 to 9 life-saving treatment. My daughter fell into category 7; thank God we did not have to send her to hospital when she got Covid.

In the Bill, this discrimination may be about saving money. The Government’s own impact assessment has revealed a saving of £2,323 if an independent advocate is not used. It is easy to work out cost, but it is much harder to measure the value of a human life.

Before I end, I thank all the parents who have written to me about the Bill. Some of them have said that they are too scared to die themselves because they do not know what on earth would happen to their adult children. These are parents who have spent a lifetime fighting. One mother wrote to me, as she digested the implications of the Bill for her own child, saying, “Sometimes, it’s easier to cry about the small things”.

My daughter has taught me a different way of looking at the world. She has taught me to live more fully and to be courageous. She has given me the strength to fight for people with learning disabilities so that they are not defined by being different. Their story is our story. We have a shared humanity and an absolute duty of care for this most vulnerable group, from the beginning of their lives to the end. It is on their behalf that I stand in your Lordships’ House and ask noble Lords to support my amendment.

[Lord Rook (Lab)]

My Lords, Amendments 154, 210 and 211 are in my name. I also support my noble friend Lady Goudie’s Amendments 202, 208 and 209; she is unable to be in her place today. I will endeavour to be brief. Together, these amendments address two questions that I believe unite noble Lords across the House: how we can protect vulnerable people from coercion; and how we can safeguard young people.

On preventing coercion, Amendment 154 would establish a simple but essential safeguard: that assisted dying should be patient-initiated, so a doctor or other health professional should not raise the subject unless the patient has done so first. The proposed legislation rests heavily on patient choice and the absence of coercion or pressure. If freedom from pressure is the legal foundation of the Bill, the design of the process must minimise avoidable influence. Dr Matthew Doré of the Association for Palliative Medicine cautioned the Commons Committee that, if clinicians introduce the subject of assisted dying, vulnerable patients may reasonably perceive that as an endorsement or even a recommendation, particularly given the power imbalance that is already in place.

We have rightly heard how much agency and patient choice play a role in these debates, but, if an assisted death is truly a matter of patient choice, why allow the authority figure in the room to introduce the option? The Bill already makes it clear that there is no duty on doctors to raise assisted dying. If there is no duty and preventing coercion is central, why not make that safeguard explicit in the Bill? I ask my noble and learned friend Lord Falconer of Thoroton this: if the Bill’s case rests on patient choice and the absence of pressure, why resist the clear rule that this conversation must always be initiated by the patient themselves?