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

Jack Abbott Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

We will not press amendment 49 to a vote, but I support the principle. Let us be clear what we are doing here: allowing people with learning disabilities to make unwise decisions and assuming capacity in all cases. Let us be honest about what we are doing if we proceed with clause 3 unamended.

[Jack Abbott (Ipswich) (Lab/Co-op)]

Upcoming amendment 339 to clause 4 addresses that specific point. The hon. Gentleman has been asked this a number of times today, but would he be satisfied if that amendment was passed?

[Danny Kruger]

Sorry—remind me of the detail of the amendment.

[Jack Abbott]

Essentially, the amendment would require that if a person is autistic or has a learning disability, they must be given accessible information and sufficient time to consider it. Additionally, there must be at least either a supporter or an independent advocate there. That amendment was tabled by my hon. Friend the Member for Bexleyheath and Crayford and will be discussed later.

[Danny Kruger]

I would indeed support that amendment; it would go a long way to addressing the concerns that we have here. When we discuss clause 4, I will come on to some suggestions for how we can make sure that people with learning disabilities are properly supported, particularly people with Down’s syndrome.

To finish, I will speak to amendment 50, also tabled by my hon. Friend the Member for Runnymede and Weybridge. If we are going to proceed with the MCA, we need to have it on the face of the Bill, to ensure standardisation —hon. Members have confidently asserted that it happens anyway, although the evidence we have been presented with demonstrates that it does not in all cases. Let us be much more explicit about the requirements that are needed. We should specify the minimum of what needs to be understood for capacity, including understanding the likely process of all treatment options, including non-treatment, and prognostic uncertainty. It is not acceptable, in my view, to have all of that worked out later by clinicians. Parliament must clearly say at this stage what is important.

While Members are looking at the quite extensive terms of amendment 50, it would be good to know what in that list they would object to and why any of it should not be included. It does not change the Mental Capacity Act; it preserves the integrity of the Act. It simply specifies more precisely and gives clear guidance to doctors to ensure that they do the best job they can. Lastly, it states that the patient must have full understanding of the consequences of

“requesting assistance in ending their own life”.

That includes the potential for medical complications at the end. That is a point that has been touched on a little in debate, but I will quickly say a word on that.

It is very important, in my view, that we are clear about what the patient should do, what the doctor should do, what the patient is entitled to do and what the doctor will do, in the event of complications at the end. This is not an abstract question. The Association for Palliative Medicine of Great Britain and Ireland gave evidence to us, stating:

“It is important to highlight the lack of scientific evidence for the effectiveness, failure rates or complications of any ‘approved substance’”,

and pointing out that the proposals in the Bill fall quite short of

“the usual practice of approving treatments in the UK, which mandates careful assessment of drugs and their combinations.”

We do not know how that will be applied in this case. It is a point for later in the Bill how we consider which drugs should be used, but it is relevant at this stage to insist that patients are made fully aware of the drugs that will be used and their potential complications. We often refer to Oregon as an inspiration for the Bill, and the law in Oregon requires the applicant to be fully informed by the attending physician of the

“potential risks associated with taking the medication to be prescribed”.

It might be worth considering that.

Professor House, in evidence to us, pointed out that informed consent—which is obviously a principle of the Bill—

“is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 169, Q216.]

So I think it is important that we specify that those complications are explained to them clearly at the outset.

This is not an abstract point. Sarah Wootton, chief executive of Dignity in Dying—my least favourite organisation—wrote in her book “Last Rights”:

“We have to move away from idealised, sanitised, nursery-rhyme accounts of what death can be…towards truthful, no bullshit, plain-spoken explanations of what could happen.”

I do not think Dignity in Dying applied that test when putting those disgraceful adverts in the tube, showing people dancing round their kitchens anticipating their lovely death, but she is right that we need to be very clear about what actual death can be like with these drugs.

I want to end with a reference to the work of Dr Joel Zivot, an American academic. The only proper study that can be done into people who have been given lethal drugs to die, using any of the drugs that will be used in this case, is of people who have been executed in the United States. Of course it is not possible to do many studies into the after-effects on people who have had an assisted death, but there have been some studies of people on death row. Dr Zivot’s point is that there is real evidence of what looked like trauma, distress and pain suffered by people as they died. Even if they themselves look peaceful—because often the first drug that is administered is a paralytic, so they are rendered immobile, and they may look very peaceful—it is evident that in some cases there is real distress going on beneath that peaceful exterior. We need to do a lot more work on understanding which drugs would be used and what their effects would be, and that needs to be properly explained to patients. All of that would be captured in amendment 50.