[Back to Healthcare]

Introduction

On 16 October 2024, the Labour MP Kim Leadbeater presented a Private Members’ Bill to Parliament, the "Terminally Ill Adults (End of Life) Bill 2024-25". The long title states it will “allow adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life”. The text of the bill was published on 11 November 2024.

This is a subject which has been discussed for a very long time. Among the resources available is the article and discussion on this site (Assisted Dying), which was prompted by the previous UK attempt in April 2022. This considers the ethical issues, and the valid concerns on both sides of the debate: please read it as a background to this article.

Costly

There is a lot of paperwork involved: pages 25-32 of the published bill contain the six schedules - the forms to be completed and declarations to be made. It involves the patient, two Doctors, a witness, and the High Court or Court of Appeal.

Ms Leadbeater said the bill includes "the strictest safeguards anywhere in the world". In other words, the process involved is lengthy and expensive. The 'Coordinating Doctor' needs to put in a lot of time and effort to make this system work.

To state the obvious, this will either be a significant burden on the NHS - a burden which has not been costed - at a time when it is desperately short of resources, or the people involved will cut corners, partly to save money but probably mainly because there are too many other people needing their time and attention. Either way, the cost will be significant. It will also place an additional burden on our courts, again at a time when they are unable to cope with the demands placed upon them: the backlog of cases is very high and still growing; many people are already suffering as a consequence.

Ineffective

The bill does not address the publicised need. In schedule 1, in the very first statement, the patient says:

I declare that if I am eligible to be provided with assistance to end my own life
under the Terminally Ill Adults (End of Life) Act 2024 (“the 2024 Act”), I wish to
be provided with that assistance.

In other words, in order to start this process, the patient needs to state that they wish to die now. This is not helping someone who wants the assurance that, if their condition worsens badly enough, they will have help to end their life if they need it: this is someone saying that they have already reached that point and they wish to end their life now. And then they face a lengthy process, with periods of reflection, a court hearing, and 4 more schedules requiring to be completed (one is completed after the death). This is not what people are asking for.

I know that personal stories are not evidence, but (for what it's worth) I have participated in numerous discussions about assisted dying. In every single discussion, people have said that they support the bill, and justified it on the basis that "If I find myself [xxx], then I want to have somebody help me die." And not once has the '[xxx]' they described fallen within the remit of this bill. I have generally responded, telling them this bill does not cover that scenario, and they have always dismissed my point as irrelevant.

In my experience, therefore, many of the people supporting the bill know that it is ineffective - that it does not offer what they want - but they are supporting it because they believe that it will pave the way for legislation which is far less restrictive. In other words, they believe that once the principle of killing the sick has been accepted, then they will be able to apply that principle to far more people in the future.

Dangerous

There is no real protection in the bill. The "strictest safeguards anywhere in the world" cannot work as claimed.

Instead, there is the appearance of protection. In Schedule 1, the patient is required to state:

I make this declaration voluntarily and, in particular, I confirm that I have not
been coerced or pressured by any other person into making it.

To state the obvious: if someone is being coerced, they will be coerced into denying it. I am reminded of being asked, when flying into the USA, to state that I was not a terrorist. I doubt they catch many terrorists that way.

And it is fairly obvious that if a bill with costly 'strong protections' is passed, those protections will be adjusted over time, watered down, made more efficient, so that we can make better use of the limited resources at our disposal. You can promise this will not happen all you like, but there is nothing anyone can do to prevent future governments from changing the rules.

Far more importantly, the whole bill is an act of coercion. Many sick and disabled people feel guilty about the quantity of resources being spent on them, and on the human cost to the family and friends caring for them. Once the law allows you to choose, the possibility of assisted suicide will become the moral obligation of assisted suicide. There is no possible way to prevent this.

The act even explicitly allows a Doctor to raise the question of assisted suicide with their patient. Do you want to do this? "Yes, I want to do it because I am a good person, and it is the morally responsible thing to do, to free up resources to help younger and more needy people, those who will benefit more." This is what many people who choose assisted suicide actually say.

Misguided

I'm sure that the people behind the bill, and most of the people supporting it, are good people who want to reduce unnecessary suffering, and prevent the fear of unnecessary suffering. But there is another agenda which will be supporting the bill - if you get into the details, several other agendas.

Eugenics is bad science, but has been practised by many societies over the centuries, and is supported by many people today. Once we are allowed to kill terminally ill people, it is much easier to decide to kill others. The details are unimportant, but there are many possible targets - people who, in the eyes of many, 'never would be missed'. Groups who want to kill others will be strongly supporting this bill, because it moves our legislation and our society in 'the right direction'. Disabled and damaged people, people who are 'unproductive', who are a drain on our resources, will all be in the firing line as soon as we accept the idea that if someone is going to die in the next six months, it is acceptable to kill them now.

Nobody is campaigning to kill disable people and prevent the birth of disabled children - not in public, at least. Not yet. But it is totally irresponsible to pretend that such people - such beliefs - do not exist, and will not be supporting this change.

Unnecessary

This bill is not needed, but significant change is needed - in part, to address the real fears many people have, but also to improve a system which is well intentioned but badly managed and under-resourced.

The principle of double effect, while not recognized as a legal principle in the UK, has nevertheless long been accepted in this context. As Wikipedia accurately reports:

While euthanasia remains illegal in the United Kingdom, it is not uncommon for a patient’s death to be hastened and for there to be no legal ramifications attached to the physician that caused the death. Indeed, Lord Goff ruled in Airedale NHS Trust v Bland that doctors who intentionally do everything necessary and appropriate to relieve a patient’s pain and suffering, even with the foresight of possible terminal consequences, are considered legally protected when a death is hastened.

In other words, it is a crime to kill your patient if it is your intention to kill them, but it is not a crime to kill your patient if your intention is to relieve their suffering, and their death is only an inevitable consequence. This may sound like a legal trick, but your intention is a vital element in UK justice - and it is hard to see how justice and compassion can be held together in any other way. There is no legal need in the UK for any dying person to suffer. Of course, the reality is that the system fails people far too often - but that does not mean the system itself is wrong.

Ms Leadbeater said the law needed changing because some people "have a horrible, harrowing death", no matter how good palliative care is. That is not true: some people have a dreadful death, but that is because palliative care has failed them - because we do not provide the necessary resources, and because we do not listen to the patient.

We can improve the quality of life for both the patient and their family and friends, increase the length of time the patient can enjoy this good quality life for, and also save money by reducing unwanted treatment - all by talking honestly with the patient about their medical prospects, asking them what they care about and what their priorities are, listening to what they say, and putting their wishes first. If you don't believe this, read Atul Gawande's Being Mortal.

The choice is a simple one: we can invest in killing people, or we can invest in helping them live better. Or we can do what we so often have done in recent years, and ignore both these options and invest in making more money instead.

Articles

Assisted Dying: the November 2024 Bill