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

Rebecca Paul Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

That was a specific question to Mr Amin, but it is an important issue. Does anyone else wish to come in, briefly please?

Chelsea Roff: One thing I would like to highlight in our study is that all 60 people who died—young women, mostly—were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment. It is important not to make a false equivalence between mental capacity and mental health.

We could, for instance, have a person who has a prognosis of six months or less, but their wish to die is emerging from severe depression, from suicidality. We saw very high rates of suicidality and depression: 89% were depressed and nearly half chronically suicidal when they died. Physicians emphasised, still, that the wish to die was not emerging from a mental illness, despite them having diagnosed mental illness.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Chelsea Roff. First, thank you for your written evidence, which I found extremely helpful. It indicates that in Oregon, California and Colorado, patients with anorexia have qualified as having a terminal illness. There have been instances of patients suffering with anorexia being described as terminal, and of treatment being withdrawn, in the UK itself. Is it accurate to regard these young women as suffering with a terminal illness? What changes to the Bill would you suggest to protect them better?

Chelsea Roff: Thank you for that question. No, I do not think it is accurate, but I have to emphasise that laws in other countries have expanded through clinical interpretation, not just legislative amendment. There are clinicians—a very small minority—who disagree and who have characterised anorexia by name as a terminal illness, but they have also said that eating disorders qualify because of the physical manifestation of the disorder. You cannot disentangle a mental disorder from its physical effects. They cite terminal malnutrition; we have identified 25 cases between California and Colorado where malnutrition was listed as the terminal condition. I cannot rule out whether that was anorexia or something like voluntary stopping of eating and drinking, but I worry that it is the physical manifestations that will be cited and, without a mental health safeguard in the Bill, that puts a whole lot of people at risk.

[The Chair]

Dr Griffiths or Professor Shakespeare, do either of you wish to comment, because you have not spoken yet?

Professor Shakespeare: If you look at clause 2, the definition of terminal illness is very clear:

“a person is not to be considered to be terminally ill by reason…of…having one or both of…a mental disorder”

or “a disability”. I think that would cover that case.

Chelsea Roff: May I add one sentence? I think you have left out an operative word in that sentence, which is “only”. It reads,

“a person is not considered terminally ill by reason only of”—