Today the Commons met to consider the Report Stage of the Terminally Ill Adults (End of Life) Bill. As a member of the committee which has been scrutinising this Bill for months, Rebecca was pleased to have the chance to share her perspective with the House. Because of the very large number of Members who wished to speak, a time limit on members speeches was imposed. This means that Rebecca was not able to make all of the points she would have liked.
The full speech she would have delivered without time constraints is copied below.
Thank you, Mr Speaker. It is a privilege to speak in this place on such an important Bill after having being part of the committee that scrutinised it line-by-line, and on some occasions word-by-word for several months earlier this year.
It is a pleasure to see many of my colleagues from Committee Room 10 in here today – a reunion of sorts, and I am here as always with the intention of improving the Bill, so that, if it does indeed pass, vulnerable people are as protected as they can possibly be from unintended consequences.
It's important to remember that during this stage and third reading, we are not voting on whether we agree or not with the principle of assisting someone to end their own life.
Our role is to vote on the law in front of us; whether the words on the page are clear and do what is intended, whether the statutory process is safe, and whether ultimately the provision of assisted dying benefits our communities.
I am one of those people who is not against assisted dying in principle, but I am against this Bill - and I am happy to put on the record now that I have no personal religious beliefs. I’m against it for this simple reason. It will harm far more people than it will help, and those people that will be harmed are the most vulnerable in our communities and I'm not willing to accept this collateral damage.
So today is important , as we have the opportunity to improve the safeguards in the Bill so that some of these groups are better protected. And I urge members to take that opportunity to the full.
It requires very little skill to draft law that works for 90% of cases, but there is much skill in ensuring that the other 10% is catered for as well.
I urge everyone to set their standards to the highest today and think about how we can ensure those un-ordinary and un-expected cases are adequately protected too. It really is life and death so please don't accept anything that isn’t good enough.
Mr Speaker, there is much to discuss today and little time so I will start at the beginning of the Bill, at the point where criteria for eligibility for an assisted death is set. It is here where important safeguards are needed to ensure those who should never be eligible are excluded. We should not make the mistake of assuming that a doctor will always make the ‘right’ decision or that they are infallible, it is incumbent upon us to put in place law that makes it harder for them to get it wrong. That makes it harder for someone vulnerable to fall between the cracks.
And there are many helpful amendments in this vein, namely New Clauses 16, 19, 80, 14, 38, 81, 24, 30 and 31. In simple terms, these amendments seek to tighten and refine the eligibility criteria for an assisted death, by setting out when an assisted death should be allowed and for what reasons, and ensuring that those who are vulnerable are protected from something that may not be in their best interests.
Interestingly, at the time of second reading, the argument being put forward for an assisted death was to spare those, who were dying, from unbearable pain. This is an argument that everyone understands and has full sympathy with. No one in this place wants people to endure pain as they come to the end of their life. I certainly wouldn’t want that for my loved ones, or indeed for myself, when my time comes. But then, the arguments put forward changed. There was less emphasis on pain, and more on choice and autonomy. The word “autonomy” came up again and again in Bill committee - and autonomy is important, of course, up to a point.
We have moved from a proposal to provide a humane end to someone’s pain when it can’t be relieved in the last months of their life, to providing an assisted death service to those who choose it for any reason, even if the pain can be alleviated by palliative care. But this approach comes with a cost to others - family, clinicians and broader society. This really is momentous – there is no going back from such a massive shift. A move to autonomy trumping everything else, changes everything.
And that is why I have tabled amendment 80 to bring this Bill back to its original origins and intentions. My amendment requires that in order to be eligible for an assisted death, the pain and discomfort experienced (or expected) from the terminal illness cannot be reasonably relieved to the person’s satisfaction through palliative care. This amendment seeks to limit assisted death to the very small group of people that may benefit from it. Not the larger group that actually just needs adequate palliative care to give them the comfortable, dignified death they deserve. And my amendment in combination with my hon friend for Runneymede and Weybridges’ amendments 30 and 31, would drive significant improvements to palliative and end of life care getting us closer to consistent and universally available care for all.
The current situation we have now where fully funded palliative and end of life care is not available in certain postcodes, means those unfortunate patients do not have a real choice. We know that 25% of the people who die in this country do not have the palliative care they need. That is more than 100,000 people a year. And if this bill goes through, they now will be offered a fully funded assisted death as the only reliable way to end their pain. That is no choice.
But I urge members who want to see improvements in palliative and end of life care to vote in support of my amendment 80 and Spencer 30 and 31if they are pushed to a vote.
I now want to move on, Mr Speaker, to the lack of a best interests test in this Bill, which is what my New Clause 16 seeks to remedy. Patient autonomy is of course important but it must be balanced against what is in someone’s best interests. So, in certain situations when it’s in the best interests of a patient, treatment can be given against a patients will. For example, force feeding a young girl with anorexia. This isn’t an easy balance to get right. But currently, in the absence of any best interests test in this Bill, following the process rigidly will lead to devastating results in some cases.
The current Bill prioritises autonomy of the patient in a specific moment of time, rather than what might be in their best interests in the long run. It makes no allowance for the fact someone may feel a certain way temporarily due to other considerations. For example, when someone has just received a terminal diagnosis that can understandably cause a depressive state and suicidal feelings. But those feelings don’t necessarily remain, so it may be in the best interests of the patient to allow a little time to pass, give a little breathing space, before considering the assisted death route.
I have tabled New Clause 16 which essentially tries to provide this best interests test by excluding certain reasons that may be driving a patients decision rather than the alleviation of pain. For example, we have heard a great deal about the internal pressure from patients themselves driven by concerns of being a burden and we heard clearly in bill committee that a patient can tell a doctor that they are only wanting an assisted death for financial reasons and they will still be approved. We know from overseas territories that often patients will opt for it because of social and welfare issues, such as being homeless.
How can we be happy with a process that doesn’t exclude such reasons? Instead of providing the support actually needed, the state is content to put them on a pathway that leads to their death. I hope this house will recognise that whether you support assisted dying in principle or not, its morally bankrupt to not have some kind of best interests test, to protect those who aren’t seeking death to alleviate pain from a terminal illness.
Another group that is particularly vulnerable is those with eating disorders. In Chelsea Roff’s oral evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide, with anorexia nervosa listed by name as a terminal condition. To paraphrase her, “these were young women who were not terminally ill and had decades of life ahead of them”.
It’s important to make the point that someone suffering with anorexia, or indeed any mental condition, is not intended to be eligible for an assisted death. It was one of the rare things we did all agree on in bill committee, however in the case of anorexia there are physical manifestations of the illness, such as malnutrition and diabetes, that might mean the patient meets the definition of being terminally ill (inevitably progressive and not reversible, 6 months prog). And that is the nub of the problem here. The Bill doesn’t adequately rule out physical manifestations caused by mental illness.
That's why the honourable member for West Bradford’s Amendment 14 is so important. It ensures that anyone who voluntarily stops eating or drinking isn’t eligible for assisted dying. I support this amendment strongly as it addresses a big risk. In other overseas territories, we have seen patients who don’t qualify, shoe-horn themselves into eligibility by stopping eating and drinking to get the physical symptoms needed for a doctor to diagnose a terminal condition.
And lastly on eligibility specifically, I want to talk about capacity. There are such problems with the current approach to determining capacity that I barely know where to start.
When it comes to ending one’s own life, there should be a higher standard applied. The current definition of capacity was not created with such a monumental decision in mind, and if this were being drafted from scratch today it would look very different. This is one of the reasons the Royal College of Psychiatrists does not support this Bill.
Under this Bill, a person is assumed to have capacity in the first instance, a clinician only needs to be over 50% sure that a person has capacity, if that person is making unwise decisions that is not taken into account, and a person can be "helped” to make a decision, for example when a patient has learning disabilities. So I ask you all today, are you happy with that? Does that sound like a robust approach to assessing whether someone has capacity to make the decision to end their own life?
Let’s begin with the starting presumption of capacity. This is too lax a standard for assisted death decisions. I therefore support the hon member for Bexleyheath and Crayford’s Amendment 24 which disapplies this specific piece of the Mental Capacity Act for the purposes of Assisted Dying. This does not address all the issues, but it certainly addresses one major flaw and would undoubtably improve the safety of this Bill - and one of the biggest issues for me is the fact that the current approach requires “an impairment of, or a disturbance of the brain” for someone to be considered to not have capacity irrespective of whether they can make a decision.
So, even if someone can’t make a decision, they can’t understand the information, they can’t retain that information, they can’t use that information to make a decision and they can’t communicate that decision, they will still be deemed to have capacity in the absence of a diagnosable impairment or disturbance of the mind or brain.
So in the real world, Mr Speaker, what this actually means is that a doctor could assess a patient, who gives the impression of being confused, illogical, erratic, inconsistent – everything about them could scream they’re not in a good place to make this decision at that point in time, but they will still be considered to have capacity if there’s no identifiable impairment or disturbance in the function of the mind or brain. The doctor may well have significant reservations, but they only need to be 51% sure for the patient to meet the threshold.
This potentially put those with depression, anxiety, learning disabilities, eating disorders or even those just experiencing physical pain that’s driving them to distraction, in danger of being considered to have capacity when they do not. Again I say, if this law was put together now for Assisted Dying decisions specifically, it would never look like this. It’s simply not good enough, and the bar is set far too low.
So far I have very much focused on eligibility for an assisted death, but it’s also important to remember that there are many other organisations and people impacted by it too that we need to have due regard to. Doctors, nurses, social workers, pharmacists, family and friends. Hospices, care-homes, clinics and NHS hospitals.
Hospices, in particular, play a vital role in local communities by providing high-quality, compassionate care at the end of life, and I pay tribute to their work, especially St Catherine’s and St Raphael’s that serve my own constituency of Reigate. But the past few years have been challenging with ever increasing costs and rising demand for services. They face huge financial pressures that put their essential work in jeopardy and could lead to unprecedented closures.
I think it’s important to note that in oral evidence we heard that most staff working in palliative care don’t support assisted dying and would not want to participate in it. Thus there is a real risk of losing these experienced staff if we do not adequately protect our hospices and respect their right to not provide Assisted Dying.
We also need to be cognisant of patient need and comfort. There is a cohort of patients that would not go into a hospice if they knew it provided Assisted Dying. Going into a hospice already has certain connotations for them, it scares them, and that means it can be difficult to get patients the care they need early on at the best of times. If we are unable to keep some spaces as Assisted Dying free zones, we will see more patients disengage from health care and not get the support they need. This is particularly relevant for ethnic minority groups as we heard so powerfully from Dr Jamila Hussein during oral evidence.
I therefore wish to talk in support of some of the amendments tabled that would better protect hospices and their staff.
New Clause 17 and New Clause 18 in my name provide these important protections that are currently lacking in the Bill. New Clause 18 makes it crystal clear that any regulated care home or hospice can decide whether or not to provide assisted dying on their premises. And New Clause 17 makes it clear that they cannot be subject to any detriment for not providing or permitting assisted deaths and that their public funding can not be conditional upon them providing this service.
Mr Speaker, whether you’re in favour of AD or not, we must preserve the rights of organisations, companies and charities to choose whether to offer it. They must never be forced into it by public funding being conditional upon the provision of Assisted Dying. There is a space for all kinds of groups, those that want to provide Assisted Dying and those who don’t, and we must carve out space for both otherwise we will lose some amazing hospices.
I note New Clause 10 tabled by the honourable member for Spen Valley as it expands the protections for individuals to not participate in the Assisted Dying process if they so wish. This new clause seeks to protect employees from being subjected to any detriment for either participating or not participating in the provision of assisted dying. This is a sensible protection, and ensures that if an NHS hospital is providing an assisted death service that any member of staff that doesn’t want to participate does not have to and won’t suffer any detriment from that.
However there needs to be a sensible mechanism balancing this against the employers right to set their own policy on Assisted Dying and the requirement for employees to respect that. So by way of example, if a hospice run by a charity chooses to not provide Assisted Dying for reasons of conscience, what then happens if one of their employees who agreed to the policy at the commencement of their employment, goes against this policy and attempts to or does assist in the death of someone whilst performing their duties at the hospice? There is a clear risk that the hospice won’t be able to take action due to the current protection from detriment provision. Yet it’s unreasonable to not allow a hospice to enforce its own policy on this issue.
And it’s for this reason that I have put forward my amendment New Clause 10(a) to make it clear that an employer does have the right to prohibit their employees or workers from providing such assistance in the course of their employment with that employer. I will be moving this amendment to a vote if the opportunity is presented and I hope members will vote to give those hospices that choose not to provide Assisted Dying the protection they need.
I am aware I am now pushing my luck, Mr Speaker, so before I finish I just want to draw attention to a few important amendments on the process itself which specifically address the lack of focus on family and next of kin that permeates this whole bill. This is something I feel deeply and I raised many times during Bill committee. The absolute primacy of patient autonomy and patient accessibility has led to a bill that lacks compassion for everyone else.
Under this Bill, the first a family may know about the assisted death of their loved one is when they get the call to collect the body. They are not required to be told that their loved one wishes to have an assisted death, they are not notified when the Commissioner refers the person’s case to a panel, they are not notified when the panel is considering the application, they are not notified when the panel grants a certificate of eligibility for assisted death and they are not notified of the assisted death itself. But even if they are aware of the process, they have no right to be heard by the panel. However relevant the information they have may be. They can not demand to be heard. And they have no right to appeal a decision to approve an assisted death, in any circumstances.
However, once it’s all taken place and the life ended, the state is then happy to pass over full responsibility to the family for arranging burial, along with all the trauma and guilt that comes with it. We have the chance to learn from the mistakes of overseas territories and Amendment 23 in the name of the Honourable Member for Broxtowe is a real opportunity to meaningfully improve the situation, certainly for young patients under the age of 25. It helps reduce the number of mothers and fathers and other family members that will get that unexpected call on a Tuesday morning that turns their life upside down.
By amending Clause 15 to require the panel to notify the next of kin of their decision in the case of someone under 25, they will be aware of what’s happening and can at least attempt to intervene, or can provide support if that is most appropriate too.
We have to remember that there are young people with learning disabilities that would be very vulnerable to following a pathway they think their clinicians want them to follow. Parents, guardian’s and loved ones need to be aware so they can intervene if necessary. I truly hope the house will support this amendment which will go someway to safeguarding vulnerable young people and their families.
Mr Speaker I will end there. I thank you for your patience and generosity in time, and I am grateful that I have had the chance to speak in support of the amendments that I believe are crucial in meaningfully improving the safeguards. I look forward to hearing from other members today.
