Terminally Ill Adults (End of Life) Bill
Debate between Daniel Francis and Gregory Stafford(1 week, 2 days ago)
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Daniel Francis
I rise to speak to amendment 24 in my name, and I will start by thanking my hon. Friend the Member for Spen Valley (Kim Leadbeater) for inviting me to be a member of the Bill Committee.
I accept the principle that somebody given the devastating news that they have six months left to live should be able to choose the moment that they die, with their loved ones around them, but this is not a vote on the principle. We are not being asked to make an arbitrary yes or no choice, for we are legislators, and my experience on the Bill Committee tells me that this Bill, as written, still requires additional safeguards to address the concerns of so many people in this country.
For me, it was death, and my thoughts and concerns about what happens when I die, that drew me to my conclusions on this matter.
Daniel Francis
I will not, because of time constraints; I am sorry.
Like a small number of other Members in this House, I know the daily concerns of being a parent of a child with complex disabilities, including a learning disability. That concern lives with you every single day of your life: that concern about what will happen to your child when you are gone—about who will assist your child, because of the help they require due to their level of mental capacity and the difficulties they have communicating and interpreting information. 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. The parents of someone with a learning disability become accustomed to supporting them in their decision making. We understand their sight and communication difficulties, and the language needed to help them make a decision. The Mental Capacity Act rightly has a low bar to allow individuals to live a fulfilling life, because we would not want individuals to have their capacity assessed to purchase a coffee or withdraw money from the bank.
I raised countless times in Committee—it was never challenged; in fact, it was accepted in some exchanges—that it would absolutely be possible for the following scenario to occur. An adult with a learning disability discovers that they have less than six months to live. They have a level of mental capacity that allows them to make many decisions in life. They have enough capacity to understand that they could be a burden on their elderly parents. Their elderly parents might take the view that their son or daughter requires support to make the most complex decisions, yet because their son or daughter is assumed to have capacity under the first principle of the Mental Capacity Act, they could go through the entirety of this process—and the first time that the parents were aware of it would be when they were informed that their child had been assisted to die.
For the same reason, I support amendment 8, tabled by my hon. Friend the Member for Derby North (Catherine Atkinson), and amendments 10 and 33, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), which relate to family members’ awareness of the process.
The second principle of the Mental Capacity Act is:
“A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.”
It was accepted in Committee that doctors would have to assist individuals in this scenario to make the decision about an assisted death. From my lived experience, I would query how some aspects of the Mental Capacity Act are being carried out, given that I often have to deal with professionals who deem that my daughter has less or more capacity than she actually does. I have accepted that she would not have enough capacity to go through the process, but the Bill Committee heard from Mencap in oral evidence that the vast majority of people with a learning disability in this country are not in the same position and could apply for an assisted death.
The Bill Committee heard from many people. Dr Rachel Clarke raised her concerns about capacity. Baroness Falkner, giving evidence on behalf of the Equality and Human Rights Commission, said that
“capacity is a very serious consideration in our concern.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 178, Q232.]
Dr Jamilla Hussain gave evidence about one palliative care team deeming that someone had capacity, while another palliative care team deemed that they did not. We heard from Professor Gareth Owen, from Dr Annabel Price and from Dan Scorer of Mencap, who all raised concerns.
In the last week, the Law Society has said that Parliament should fully consider how the Mental Capacity Act would operate under the Bill before any legislation is passed. The Royal College of Psychiatrists has said that although it is neutral on the issue, it opposes the Bill as it stands—particularly the mental capacity aspect, because, as it is written, it does not correlate with the Mental Health Act. Over the last few days, the Royal College of Physicians has also come out in support of that position.
Over the last six months, I have heard a lot about choice, compassion and dignity, but what about choice, compassion and dignity for the people I have described? I fundamentally believe that it is my job, and the job of all of us, to protect the most vulnerable—but the Bill, as it stands, fails to do that. I have every sympathy with somebody at the end of their life, as I have said; I believe that they should have the right to go on their own terms, at their own time. But are there sufficient safeguards to ensure—in response to those who have links to the press and Parliament to make their voice heard—that we fully consider every scenario and safeguard those who do not have those links and who do not have a voice?
If that choice comes at the price of one person, in a borderline capacity decision, being presumed to have capacity, that will be one death too many. My view is that it is not a price worth paying to allow others to have that choice. For that reason, I implore colleagues to support my amendment 24.