Baroness Hollins (CB)

My Lords, it is a pleasure to follow my noble friend, who has presented a different approach to assessing capacity. I was a member of the post-legislative scrutiny committee on the Mental Capacity Act. Both in my professional capacity as a learning disability psychiatrist and as a family carer, I have observed the misapplication of the Act on rather too many occasions. It is quite a complicated Act and it is often misunderstood. I have serious concerns about its applicability and appropriateness for this purpose. I recently co-authored an editorial on this subject in the journal BMJ Supportive and Palliative Care. My Amendments 117 and 892 propose a bespoke decision-making framework, designed specifically for assisted dying, which would of course need to be evidenced in practice. As the mother of a neurodiverse son, I share the concerns expressed by the honourable Member Daniel Francis in the other place. He is the parent of a daughter with a learning disability, and said: “The concern that haunts me every single day is, ‘Who will make, and how will they make, those decisions to support my daughter when my wife and I are gone?’ That concern, shared by thousands of others, led me to the conclusion that the Mental Capacity Act 2005 was not written for this scenario”.—[Official Report, Commons, 16/5/25; col. 691.] As a parent myself, I completely identify with what he said. I really worry about the suggestibility of so many people with learning disabilities and the possibility that they might be offered an assisted death. I think they should probably not be eligible. For example, they might mask their lack of understanding. If you ask my son whether he wants to do something, and if he understands it, he will be delighted to say that he does, when I know he has not got a clue. He wants to be consulted and invited and to participate and to have the same opportunities as everybody else, when he does not have the first understanding of what actually he is being offered. That is the reality of living day by day with somebody who does not understand. It is really difficult to know. From my research looking at the Netherlands data, we found quite a significant number of people who have been offered euthanasia, and have been euthanised, for whom a capacity assessment had not been done, certainly not by anybody who had any actual experience of working with neurodiverse people. This is just not acceptable. The Mental Capacity Act was designed to support and protect people when they lack decision-making capacity. Conceptually, it is a deficit-based framework intended to identify the absence of capacity so that decisions can lawfully be made on a person’s behalf and in their best interests. It begins from a presumption of capacity, and only if there is a justifiable reason for doubting capacity for a specific decision at a specific moment is there any requirement to assess the person’s understanding. There is no such thing as being “capacitous” or “incapacitous”. The Bill, as written, requires capacity to be demonstrated, but this contradicts the presumption of capacity in the Act and creates a legal inconsistency. The Bill does not resolve these ambiguities, leaving it unclear whether professionals are expected to apply the Mental Capacity Act as a deficit-based framework or to repurpose it as a positive authorisation tool. The Royal College of Psychiatrists has serious concerns regarding the use of the Mental Capacity Act and recommends a formal review of its suitability as the decision-making framework for assisted dying, which is why I have proposed an alternative. Assessing capacity is also inherently subjective and vulnerable to bias. Judgments are influenced by the assessor’s values, the context and the relationship with the person being assessed. These biases are likely to be amplified where assessments are undertaken by a limited group of professionals working in a context in which requests for assisted dying are framed as expressions of autonomy. Such a setting risks subtly predisposing assessors towards affirmation rather than critical scrutiny, particularly where capacity is treated as something to be confirmed. An article published in the British Journal of Psychiatry this week by two prominent psychiatrists and psychotherapists highlights exactly this: the role that unconscious psychological processes play in decisions related to assisted dying. These influences are not currently being considered when assessing decision-making capacity but are extremely relevant. Near the end of life, cognitive impairment is common and undermines genuine decision-making capacity. A patient may articulate clear preferences despite a compromised ability to understand, retain or weigh information. A study of hospice patients with no clinically obvious cognitive disorder of impairment, published in the American Journal of Geriatric Psychiatry, found that over half had significant previously undetected cognitive impairment on formal neuropsychological testing. In the same journal, another study of terminally ill cancer patients receiving palliative care found that cognitive impairment was common, with just under half showing impairment in understanding and appreciation, and around four in five showing impairment in reasoning. Importantly, there was poor agreement between the physician’s judgment of capacity compared with more structure neurocognitive testing. Those and other studies show that evidence-based structured assessments are essential in end-of-life context for decisions with irreversible consequences. It is inappropriate for the Bill to require psychiatrists to assess capacity. We are trained to diagnose and treat mental illness as well as prevent suicide. There is no requirement in the general psychiatry specialty curriculum for expertise in assessing decision-making capacity or detecting cognitive impairment in terminal illness. So, requiring psychiatrists to confirm capacity in assisted dying means treating a wish to end one’s own life as an autonomous and valid choice in one context while continuing to regard it as a symptom of mental illness in another. What a confusing position to find oneself in. Other professionals, such as practitioner psychologists, may be better positioned to evaluate decision-making in end-of-life contexts due to their expertise—a position supported by the British Psychological Society. The Mental Capacity Act and the current approach to capacity in the Bill are not fit for purpose, which is why I have proposed a different approach. Obviously, this would require expert development and testing.