Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Finlay of Llandaff
Main Page: Baroness Finlay of Llandaff (Crossbench - Life peer)Department Debates - View all Baroness Finlay of Llandaff's debates with the Department of Health and Social Care
(1 day, 4 hours ago)
Lords ChamberMy Lords, we come to a key concern in this Bill—the very real risks of coercion and pressure to seek an assisted death. While the Bill acknowledges coercion, it does not fully address the dynamics of domestic abuse at the end of life nor the intersectional risks faced by women, those who are disabled, whether long-term or through illness, and those from ethnic minority backgrounds.
ONS data showed that, from March 2023 to March 2024, 2.3 million people over 16 were subject to domestic abuse. This equates to one in 20 of the population between 16 and 65 years old, yet only 45,000 of them in England and Wales are known to the police. In the older population, the incidence is even higher. Hourglass has estimated that one in five experiences some sort of abuse. Since the start of the Covid-19 pandemic, incidences of domestic abuse reported to third sector and statutory agencies have increased by over 60%. A systematic review by Michelle Myall and colleagues covering 2000 to 2021 found that the incidence of abuse increased in terminal illness. These results resonated with Jamilla Hussain’s findings in Bradford.
People with life-limiting illness experience a range of abusive behaviours in three broad categories: coercive and controlling behaviour, emotional and physical abuse and neglect, and financial abuse. Financial abuse is particularly rife in its many forms. Take the relative who goes to the cash machine for their relative who is ill and quietly pockets some of the cash or quietly steals valuables, or the family keen for their relative to die before a fixed-term life insurance runs out. Yes, I have seen it. They wanted a new car.
Emotional abuse includes telling the person that they are a burden—directly, or indirectly through conversations that are designed to be overheard by the person who is ill. Some are told that they are not dying quickly enough. Abuse affects treatment decisions and can lead to people missing out on curative treatment through making adverse decisions about their care. For some women, death is the only way out that they can see from their situation. It reflects the national data, where suicide is now the commonest cause of domestic abuse-related deaths.
The Oregon data shows that feeling a burden to family or carers has been stated as an end-of-life concern by over 47% of people having an assisted death. This was higher than the under 30% who cited inadequate pain control or concern about it as a reason. After the noble and learned Lord, Lord Falconer, gave evidence to the Select Committee, I rechecked the official reports. Oregon does not collect data to understand whether there have been problems with coercion or report on those who are turned down for lethal drugs.
This Bill has been publicised as being about pain but does not mention pain at all. Specialist palliative care can deal with pain. Detecting the coercive threats, humiliation and intimidation, which are usually subtle and consistently maintained out of sight of anyone in authority, is far harder. It is the complaints about the heating bills, family carers being fed up with having to prepare drinks and food, groaning when asked for something—there are so many ways to give the message that you are a nuisance and would be better off dead. Abuse impacts patients’ mental health and well-being and leads to feelings of loss of control, entrapment, powerlessness and depression.
However, health and care professionals lack confidence in identifying abuse. It is rarely detected by doctors. Why? Because dependence limits disclosure. Illness increases women’s dependence on the perpetrators, making disclosure harder in the last months, weeks and days of life, even when professionals ask directly. Disclosure requires time to build trust with the same professional, who understands how abuse presents at the end of life in different cultural contexts and who can offer practical support such as safe housing, financial help and, if needed, support for dependents. Without this, disclosure is too risky.
Most women in Dr Hussain’s group said that they would not dare to disclose abuse during an assisted dying assessment as currently set out. They felt that the process was too brief, too medicalised and too uncertain to guarantee their safety. I recall a patient whose pain was not controlled on 1,000 milligrams of morphine per day. After a few days in our hospice, she disclosed to a care assistant at night the years of worsening abuse that she had endured. Total distress from hidden abuse had given her total pain. Social work intervention and safeguarding in place was the solution. She went out to a new home needing only 60 milligrams a day.
Disclosure is more likely in a trusted relationship with someone whom the person can know, whom they can look in the eye, knowing that they will work hard to improve their situation. In today’s NHS, continuity of care is not the norm. It is fragmented, with inadequate transfer of information between sectors. Patients do not see the same person time and again, whether doctor, nurse or other professional. That is why it is essential that information is sought, from police callouts to a domestic disturbance, local authority records to reveal any safeguarding issues in the household, clinical teams who have been involved, social care, community carers and family members who may well be aware of abuse but had not known how to disclose it.
Another type of subtle subliminal pressure is also addressed in this group of amendments—that arising from whatever the doctor suggests. Under the Montgomery and McCulloch rulings, patients must be informed of all possible treatments which are appropriate to that condition. If a doctor says that there is also the option of an assisted death, the patient will hear that as, “I know what lies ahead for you and you should consider ending it now”. A Canadian lawyer told me of his friend who had a stroke. On being taken out of the ambulance, he was asked whether he wanted treatment or MAID—medical assistance in dying—Canada’s term for assisted death. He also told me of patients being repeatedly asked by different doctors in the hospital about MAID, and the corrosive effect that this has.
The amendment in the name of the noble Baroness, Lady Fox of Buckley, and others, is particularly important. It does not prevent conversations but it would stop subtle coercive influences from doctors, who may be under pressure, who may feel that they have to raise this—just as the problems of DNR orders arose during Covid—or with some of the abuses of medical power and inappropriate surgery that were in the headlines not that long ago. I beg to move.
My Lords, I have a few amendments in this group. My Amendment 118 seeks to introduce
“an independent financial review and background check on close relatives before eligibility can proceed. It aims to block eligibility where there is known financial abuse risk”.
My Amendment 462 aims
“to make coercion/financial abuse checking a shared statutory duty of both the Commissioner and the multidisciplinary Review Panel”.
The noble Baroness, Lady Finlay, has set out some of the issues and concerns about coercion, which I do not need to repeat. I am a long-standing supporter of Hourglass, an amazing organisation devoted to combating the abuse of older people. It is neutral on the Bill, but its chief executive said in evidence to the House of Commons that
“there is an epidemic of abuse against older people at the moment. Some of it is due to the economic climate that we are in, with people just wanting to have their inheritance now, and some of it is due to the fact that older people feel like a burden”.—[Official Report, Commons, Terminally Ill Adults (End of Life) Bill Committee, 29/1/25; col. 160.]
I am very grateful to my noble friend for mentioning that, because that is what was being whispered to me but I did not have the statistics. I am very grateful to him for providing them.
My Lords, this has clearly been a long debate, and I think for good reason. As one noble Lord said, coercion and pressure are a major concern for many people about the way the Bill is written. I will very briefly respond. I am well aware of the time, but a lot of points have been made. Noble Lords will all be relieved to know that I am not going to go through them all.
First, the word “encouragement” is taken from the Director of Public Prosecutions guidelines, and for good reason, because the Director of Public Prosecutions recognised the power of a person in authority over a person who is vulnerable. That is why it tends towards the prosecution of assistance coming from a person in authority. I would include doctors in that, but it was also thought to include prison staff, nurses and others employed in that role.
Lord Pannick (CB)
I am sorry to interrupt. There have been a number of references to the DPP’s guidelines. For accuracy, will the noble Baroness accept that paragraph 45.5 of the guidelines says:
“A prosecution is less likely to be required if … the actions of the suspect may be characterised as reluctant encouragement … in the face of a determined wish on the part of the victim to commit suicide”?
For the sake of accuracy, I completely accept that. Perhaps the noble Lord might also see, while I am speaking, whether I am correct that the guidelines would tend towards prosecution if a person in authority was encouraging. That was my understanding.
I will raise a few points. The noble Lord, Lord Hunt, absolutely hit the nail on the head when he pointed out that, if we had had a royal commission and went through the processes and so on fully, we might be in a different place now. One of the big problems we have encountered in looking at this Bill is what has been deemed to be in or out of scope. If you do not have the services available, you do not have true choice. That is a real problem, yet those of us who have tried to table amendments to bring specialist palliative care provision into scope to match and stay parallel with any developments in assisted dying services have repeatedly been told—I have checked, and it is in the Companion that we cannot extend scope—that this was deemed out of scope. Therefore, we feel a bit stuck about how we can make sure that people get the services they need.
The Minister pointed out something in the Bill that has been a concern to a lot of us: that the family do not have to be informed. Behind that is the concern about grief. Let us take a 19 year-old with an osteosarcoma with metastases. The parents have been looking after him from childhood through to all his treatment, doing all they can to enhance his quality of life. He says that he now wants to go for an assisted death, and he does not want his parents told. The first thing that the parents hear is a phone call to say that he is now dead, having had lethal drugs. They may be aware of a whole lot of issues that have been going on in that 19 year-old’s life, which they would have shared with those involved in his care. This is pretty close to some patients whom I have looked after, because someone developing into an adult when terminally ill is very difficult, as are the transition issues.
There is another aspect to that. Having spoken to and heard from people who have a relative who has gone for euthanasia—it is usually euthanasia rather than assisted suicide—they often feel devastated that their love was not enough to support the person. They feel that they have failed, and they ask why they could not have helped the person find ways forward or access the services they need. I will quote from the commission chaired by the noble and learned Lord, Lord Falconer, with Demos, on the lack of services. It states:
“The Commission does not accept that any of these forms of pressure could be a legitimate motivation for a terminally ill individual to seek an assisted death. Therefore, it is essential that any future system should contain safeguards designed to ensure, as much as possible, that any decision to seek an assisted suicide is a genuinely voluntary and autonomous choice, not influenced by another person’s wishes, or by constrained social circumstances, such as lack of access to adequate end of life care and support”.
The motivation behind many of the amendments discussed today has been precisely to deal with that problem.
I will address two more things, beginning with the concept of how sure someone has to be. The civil standard of proof of 51% seems remarkably low when determining the eligibility of someone having lethal drugs. The implication in the debate in the other place was that the doctor should not ask the person, “Why is it that you want to end your life?” Yet in clinical practice, whenever patients say, “I’ve had enough; I do not want to go on”, you answer that with one question, another question and then another question. It feels like an onion: you take layer after layer off, and you find out what is happening. You find many remediable aspects to their situation—they might often seem trivial to some people, but they have been wearing the patient down.
I am horrified, frankly, whenever I hear of inadequate care and of people not getting the pain relief that they need. Morphine does not kill you; it is a good drug for pain relief, given appropriately in the right dose at the right time for the right reason. That is what prescribing analgesia is about. That is completely different to giving a massive overdose of lethal drugs—and, as we know, not all the ones in the world have been fully assessed.
Would the noble Baroness agree for one second that, even if someone has good hospice care and the best medications that they can, there are still patients who suffer and have pain before death, despite all the actions of the people who are trying to alleviate that?
I thank the noble Lord for the intervention. Perhaps it might be helpful for us to have a conversation outside this Chamber. But I would just say that pain is complex. It is not only physical; it has multiple components. Of the patients I have had the most difficulty looking after, we discovered that there were very many issues in the psychosocial and emotional domain: things that had happened in the past, some of which we did not know about at the time. But I do not want to go off message from these amendments, which are really important.
These amendments were put down in good faith to address the concerns expressed all around the Committee. I am disappointed that we have not got to the point of saying that we will all sit down together. I think that those of us who have drafted amendments will sit down together and discuss how we should bring something back on Report to manage the situation that we highlighted today, which is a very profound concern over coercion, abuse and all the other factors that go along with that. Apart from that, I beg leave to withdraw the amendment.