Terminally Ill Adults (End of Life) Bill Debate
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(1 day, 5 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.]
And if we run out of time at the end of that, the Bill falls. Someone will say, “it is not our fault”, but it is our fault.
I thank the noble Lord for giving way, because he is clearly trying to be constructive in taking us forward. Is not the real problem that a Private Member’s Bill is just not suitable for this issue, which is so complex and sensitive? We should have had a royal commission; I believe the Commons should then have had a vote in principle; the Government should then have brought in draft legislation; it should have gone to pre-legislative scrutiny; and then both Houses could have dealt with the issue properly. This is the problem—not your Lordships, not the scrutiny we want to do, but the very fact that you cannot possibly bring in assisted dying through a Private Member’s Bill.
Unfortunately, you can, because that is how this country works. It is called democracy. When 650 elected Members, representing 70 million people by a majority, send it to this House, we have a duty and the honour to treat that Bill with respect, not disdain, not threatening to derail it or run it out of time—
This is a new practice that every answer one gives, the person then responds by repeating their speech. So, if it is new, yes—
The Companion states that in Committee we are entitled to speak more than once, and I think it is more helpful to do it this way. I am the 11th amendment in this group that the noble and learned Lord has so eloquently dismissed so far, but I think he has about another 10 to go.
I want to make two points. First, does the noble and learned Lord not reflect, on all the concerns that have been expressed, that the Bill might have had a smoother passage if he had shown any disposition whatever to take any of these issues away and reflect on them before coming back on Report? Secondly, I mentioned the Human Tissue Authority legislation that provides some protection and investigation to make sure that a donor is not getting a financial reward. Will he at least look at that to see whether there is any way in which we could reflect that in this legislation?
On my noble friend’s first question, I have not dismissed all the amendments; I have accepted that we should look at some of them, and very many of the ones I am not accepting are because they are already covered in the Bill. I am rejecting some of them on the basis that I do not think they are practical. When my noble friend talked about the donor, I think he was talking about, for example, somebody who may benefit from the will of the patient. Indeed, that was a point raised by the noble Lord, Lord Farmer. Very often, the person who most supports you in relation to this is the person you love most and who is going to benefit under your will. So, very frequently the person who has taken a loved one to Switzerland is the person who is then going to inherit under their will. That does not make them bad, and I would most certainly not exclude people who benefit from the will of the person who dies because they have helped them in this respect. It seems to me to not properly recognise the importance of human relations in relation to this.
I have dealt with the point of the noble Lord, Lord Farmer, about the will. His second point was that, if you had a friend who was convicted of a criminal offence involving financial fraud of some sort, you should not be able to have an assisted death unless there is an investigation of your financial position. Well, if I reject the point from my noble friend Lord Hunt in relation to a close relative or the person you speak with, then I think, for the reasons I have given, it also does not apply in relation to a friend.
In Amendment 181, the noble Baroness, Lady Grey-Thompson, proposes that the doctor must ask why and seek specific confirmation that a decision is not coerced. There is no specific requirement for that in the Bill: it is for the two doctors to determine what they think the right course is. If they felt that they could not reach a decision without asking why, or without asking, “Are you being coerced?”, they would have to ask that. But there is no prohibition. It is, as the noble Lord, Lord Pannick, said, a decision for the two doctors and the panel to decide, in each case, what is the best way to reach a conclusion as to whether this person is being coerced. That is the question that all these things are addressing.