Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateLord Empey
Main Page: Lord Empey (Ulster Unionist Party - Life peer)Department Debates - View all Lord Empey's debates with the Department of Health and Social Care
(1 day, 15 hours ago)
Lords ChamberMy Lords, I shall speak to three amendments in this group—Amendment 38, in the name of my noble friend Lady O’Loan, to which my name is attached, and Amendments 39 and 68. Amendment 38 seeks to address the challenges of those who have bipolar disorder, borderline personality disorder or other conditions associated with episodic suicide ideation, who face a higher baseline risk of self-harm and suicide. Research indicates that suicidal thoughts and behaviours are significantly more prevalent among people with these diagnoses, even without terminal illness, as reported by NICE in 2022 and Public Health England in 2021. Critically, evidence also shows that suicidal ideation tends to increase following a terminal diagnosis, so without the safeguard of this amendment, the Bill risks enabling assisted dying decisions to be influenced by pre-existing mental health vulnerabilities exacerbated by the receipt of a terminal diagnosis.
I support calls in the Chamber today to look at the benefits system. It is a really complicated process, whether you have a terminal diagnosis or not. It is important to learn from other jurisdictions. The 2024 Oregon official report cited that 9% of those who requested to end their lives did so for financial reasons and 42% requested it because they were felt a burden. I think it has already been quoted that in 2011, the noble and learned Lord, Lord Falconer, with the Demos report, said that no remedial mental health condition should be eligible for assisted suicide. I do not expect an answer in the Chamber on this question this afternoon because it might take a long time—I am very happy to meet outside—but I am interested to understand what has changed from his view in 2011 to thinking that this would work in the Bill now.
Many of the amendments talk about a settled wish. I could almost see how somebody could try to justify that, for someone with a terminal condition and suicide ideation, requesting assisted dying might be a form of suicide prevention. I feel like I am tying myself in knots with this argument, but I think when we hear the argument that people are already dying, we need protection for those groups of individuals. The noble Baroness, Lady Jay, who I do not think is in her place—I am sorry, I do not have my glasses on—raised evidence given in the Select Committee and talked about paternalism. My personal experience is that I do not see much paternalism in the health service. What I do see is an awful lot of ableism, and I think that if we are talking about paternalism, we should be talking about ableism as well. From a disabled person’s perspective, this recognises the intersection between disability, chronic illness and mental health vulnerability.
The panel has already been raised in the Chamber this afternoon. The panel is a really important part of the eligibility determination and deciding whether somebody can go forward. I think that one of the only things that the noble Lord, Lord Winston, and I could agree on today is that words are important. This relates to the place of the panel. I draw your Lordships’ attention to the clarification statement that was issued by the Association for Palliative Medicine this week. Because words are important, I am going to read it. It states:
“In Friday’s … debate (9/1/26), Lord Falconer cited, and misrepresented, expert evidence presented to the Terminals Ill Adults committee last year by the Association for Palliative Medicine … Crucially, panel members would not be required to meet the patient. They would, therefore, have no individual clinical perspective to bring to bear on the person applying for an assisted death. This renders the panel a mere administrative review, stripping it of the very nuance and human understanding that defines robust, compassionate decision-making at the end of life”.
This is why these amendments are even more important in terms of what we are trying to do.
I have previously discussed suicide among unpaid carers and the pressure on them. In Canada, there is a case of a man who had carer burnout and arranged for an urgent assessment for his wife. She died that day. That is listed in the Ontario coroner’s report. There is also written evidence to show that two men who had caring responsibilities for their partners ended up doing a mercy killing, which is often, strangely, very sympathetically portrayed in the media.
Amendment 39, in my name, is about recognising where an assisted death could take place and who will be most directly affected. The settings that could be affected include care homes or nursing homes—communities that care for those living with dementia, frailty, disability or advanced illness, where dependency is a condition of daily life rather than an exception.
It is important to recognise that a significant proportion of people living with dementia or cognitive impairment remain undiagnosed until the later stages of the disease. On average, people with dementia live with symptoms for three and a half years before receiving a diagnosis. Current NHS England and Alzheimer’s Society data show that only about two-thirds of those with dementia receive a formal diagnosis. The diagnosis rate in Wales is even lower. This further underscores the need for a specialist clinical assessment before any conclusion about capacity is reached. If one in three people with dementia are never diagnosed, one in three potential applicants under the Bill may have an unrecognised impairment in capacity. This is not a margin of error that any legislator can reasonably accept.
A recent report by the whistleblower charity Compassion in Care further illustrates the heightened vulnerability of care home residents. Based on evidence submitted by over 1,000 care workers who called the charity’s helpline to express their concerns about the Terminally Ill Adults (End of Life) Bill, the most predominant issue raised in 97% of cases was that of fluctuating capacity, which is common among those residing in care homes. The British Geriatrics Society, which gave evidence during the Select Committee, estimates the prevalence of delirium among care and nursing home residents to be as high as 60%.
Amendment 68 is about protecting autonomy. It would ensure that the right to request assistance to end one’s life remains solely with the individual who is terminally ill. It would prevent any surrogate, family member or medical professional making that decision on their behalf. By explicitly prohibiting third-party decisions, we safeguard vulnerable individuals from coercion or misinterpretation of their wishes.
Finally, I would like to ask the noble and learned Lord a few questions. How will he specifically seek to protect those who are in care homes or who may be vulnerable? How will the Bill protect those individuals who have had previous suicide ideation? Where does the Bill seek to understand the intersection of those with suicide ideation who then receive a terminal diagnosis and whether this is a genuine, settled wish? How, through the Bill, will we be able to offer protection to those who have a previous history of self-harm?
My Lords, following on from the proposal in Amendment 39, from the noble Baroness, Lady Grey-Thompson, one of the issues that perhaps is not fully appreciated or understood—it is only if you have actually witnessed it that you get the full implications—is delirium brought about by a combination of medications that are applied. One particular medication can clash with another and can produce a situation which appears almost like dementia, but the patient is not suffering from dementia but delirium. The noble Baroness, Lady Grey-Thompson, expressed that very well.
The noble Baroness, Lady Berger, spoke to Amendment 31. Again, it seems an elementary thing but, whether a person is sufficiently capable at the relevant point in time and is not suffering from delirium and/or dementia is best judged by the clinician who knows and works with the patient, rather than somebody with a white coat who is dashing in and out of a ward room and trying to assess the person on the hoof.
Like the noble Lord, Lord Deben, and others who spoke earlier, I do not like this Bill. However, as I said at Second Reading, like everybody else in this room I am a legislator. We have a role above and beyond our personal prejudices and beliefs.
I must say to the noble and learned Lord, Lord Falconer of Thoroton, that, as the noble Lord, Lord Deben, mentioned, a lot of issues have come up in the past few weeks. Last week, we had the series of amendments that were ably put forward by the noble Lord, Lord Carlile, which dealt with a very serious issue. The week before, we had five separate issues dealing with prisoners, pregnant women, et cetera, and we have had other issues. I know we are only part way through Committee, but if the noble and learned Lord wants the House to compress the process, rather than have to reiterate all this on Report, then I think it would make a difference to how people approach the rest of this legislation if he brought forward coherent amendments that address the issues that have been raised.
I do not mean to be unkind, but there is no point in him getting up every Friday like Stonewall Jackson and saying, basically, “I’m right and you’re wrong”. There is a difference of opinion—a chasm, in many respects—over a lot of these issues. To be brutal about it, we need to see the colour of his money. I hope that would allow us to go forward, but unless we deal with these fundamental, basic issues then we will have a very long slog indeed.
My Lords, I thank the noble Baroness, Lady Monckton of Dallington Forest, for that excellently clear way of expressing some of the discomfort and what we would like to see. I would be much happier and feel that I did not have to speak too much if I was getting reassurance and seeing on paper what exactly will address our concerns. At the moment, we are not getting that. We wish the noble Lord, Lord Shinkwin, were here. The fact that he is not is a real shame for the quality of this debate.
Inside and outside this House, I know plenty of people who support assisted dying and this Bill, inasmuch as they know the broad sense of what it is about. I try to avoid living in echo chambers. Whenever we discuss why they support the Bill, and potentially have a bit of an argument, they invariably say, in a very humane and compassionate way, that they think it will help people who are suffering, and that anyone who says they are suffering should have access to assisted dying. It is assumed, therefore, that the motivation of illness-induced suffering is at the heart of the Bill. That is what most people think. It has come up a lot in this Chamber but, ironically, suffering is not mentioned in the Bill, and neither is there any reference to motivations in the way that one would imagine. That bothers me, because the Bill checks on capacity, prognosis and residence, but it does not enforce a check on motivation. It seems to me that we should ask somebody who says that they want assisted dying, “Why?” It is a crucial absence in the Bill, and I hope that the noble and learned Lord, Lord Falconer, might rectify that or explain exactly why the Bill does not think that doctors should ask, “Why do you want assisted dying?” I think it would throw up a whole range of red flags in relation to coercion.
I have added my name to two amendments in this group, Amendment 30 in the name of the noble Baroness, Lady Foster, so ably moved by the noble Lord, Lord Weir of Ballyholme, and Amendment 56 in the name of the noble Baroness, Lady Coffey. To save time,I will concentrate on Amendment 30, which seeks to ensure that those who seek assisted dying are not substantially motivated by a number of factors. I will focus on two of those—not wanting to be a burden on others or public services, and not being motivated by mental disorder, including depression.
This week was the 29th anniversary of the death of my father, John Fox. He was only 66. He was diagnosed with cancer and given three months to live, although he actually made it for four and a half months. When he was told, the whole family was devastated, as anyone would be. The one thing that really shocked me to the core, and stays with me, was that when I had that initial, very emotional father to eldest daughter conversation, my father kept apologising. Believe me, that was not usual. In our relationship, he did not say, “Sorry, Claire” lots of times. He was so distraught. He was convinced that he would be a burden on us, and that his daughters and my mother, in looking after him, would all have to miss work and all the rest of it. He kept saying, “I’m really, really sorry”. He was worried about how we would cope. He did not want to distress others—a point that the noble Baroness, Lady Lawlor, was making on her amendment to this amendment.
I also noticed that he kept saying sorry to the nurses and the doctors. To everybody, he kept saying, “I’m really sorry for taking up your time. I’m really sorry that you’re having to give me so much attention”. There were stories in the media at the time about bed blocking. He was a vociferous reader of newspapers, and I was hiding the newspapers because I thought he would say sorry even more, convinced that he was taking up NHS resources. It took some time and determination for the family to reassure him, but I kept thinking afterwards how sad it would have been if he had been on his own or in a care home or whatever. To be honest, if a GP had suggested that assisted death was a medical option, in today’s circumstances, I think my father would have said yes—not because he wanted it but because he felt he was a burden on the family. It would not be the GP’s fault, as it is an internal feeling of being a burden. That is not the same as choice.
I was struck by a letter from Lord Sumption in the Times that is worth reflecting on. He says:
“The current bill contains a number of provisions designed to ensure that patients are not ‘pressured by any other person’ into taking their own lives”—
that was in relation to something else. He continues:
“The real problem, however, is not the pressure applied by ‘other persons’. It is assumptions which many old and ill people spontaneously make about the attitudes of the society around them. They are afraid of being an emotional or financial burden”.
That is very important.
By the way, I had better say that, in the four and a half months following his diagnosis that my father lived, we had some of the most meaningful time of our lives with him. It was through a veil of tears, but there was love, joy and reconciliation, there were conversations that would never have otherwise happened, and so on and so forth. It was a time that was important to him and to us as a family in a way that I cannot really describe.
Another motivation that I feel strongly we need to explore is on the part of those with a mental disorder. As many noble Lords have noted, a number of mental health conditions have suicidality as a feature. Again, I am sorry to do the personal stuff, but the first time I encountered that was as a young mental health community worker. I met a young man who was bipolar. I and others—psychiatric medics and social workers—worked hard not just to prevent his suicide but, using all our skills in pharmacological and psychological interventions, to alleviate the terrible “black dog” of depression and the horror of the obsessive suicide ideation that that young man had. I have to ask, then, whether the Bill would allow such a suicidal person’s depression-induced desire for death, and whether all those who had worked with him would suddenly be expected not just to welcome it if this young man made the choice of an assisted suicide but to say, “Oh, look, a perfect exemplar of autonomy and choice”.
I was therefore a little taken aback that the noble and learned Lord, in his summation of the last group on eligibility, said in relation to those with a mental disorder that it is their choice, and that if they want it and they have capacity then that is all right. I point out that, for anyone who wants to commit suicide, it is their choice and they want it, but some of us spend a lot of time asking them please not to do it, not saying, “Yippee!” I cannot think that, in that situation, if that young man had said, “I’ve got a terrible story. I’ve got a terminal illness in addition to my bipolar depression, and I want your support and help in assisted dying”, I would say that it is all perfectly fine and he should get on with it, and be delighted for him being able to show that he is a free, autonomous individual. I would say, “Please don’t”. The four and a half months that we had with my father was the kind of quality time that I would want to ensure that young man had, every day of his life, even if he was terminally ill and dying. I would want to make sure that he was not depressed or suicidal during the time he lived.
My Lords, I am associated with some of these amendments. I do not think we want to get completely hung up on the minutiae of each particular line, because there are variations that one could make. I guess that when one is drafting a Bill there are choices to be made and language can be better if one gets professional assistance.
The fundamental point, as has been outlined by the noble Lord, Lord Weir, and the noble Baroness, Lady Fox, is that anyone here who has represented an inner-city, working-class constituency will know that the approach that a lot of people have towards doctors and the medical profession is perhaps different from the approach that we have. If we want medical assistance, I guess most people in this room can pay for it if they so wish. That is not an option that other people have.