Oral evidence to the Select Committee on the Terminally Ill Adults (End of Life) Bill concluded last week. Again, the expert witnesses voiced a range of concerns they have with the Bill. Here are some highlights.
Capacity and autonomy
If passed, the Leadbeater Bill would provide lethal drugs to patients even if they are not experiencing physical or psychological pain. Nevertheless, the Bill’s supporters have sought to exploit the public’s compassion for the sick by presenting harrowing narratives of terrible suffering. At the same time, they insist that the true purpose of the Bill is to guarantee individual autonomy. The question of how the mental capacity of those seeking to end their own lives is to be assessed has, therefore, become critically important.
The sponsors of the Bill argue that the issue can be decided using the Mental Capacity Act. However, in his evidence to the committee, Professor Alex Ruck Keene, who instructs psychiatrists on the application of the MCA to their patients, explained why the existing law would be unsuitable in the context of assisted suicide.
“Are psychiatrists able to carry out capacity assessments? Yes. Are they able to always do that perfectly? No. …We have an absolute load of evidence that that does not always happen.
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“That is one aspect, but the other aspect is we are asking them to do something completely different. The point I am trying to make is that, if you simply say, ‘Apply the MCA. Apply the principle of presumptive capacity. Support the person to have capacity to decide their own life’, I anticipate, if you asked very many psychiatrists, they would go, ‘How am I supposed to think about that? ’That is for a very specific reason. For psychiatrists, most of the time, their job is to secure life. Their job is suicide prevention. We need to know—and one of my real concerns is—how this Bill sits in the wider landscape of the law. I need to be able to tell, because I am going to be one of the people writing the books here and giving the training. I need to be able to say, with absolute crystal clarity, to a psychiatrist, ‘This is the point where you are not in suicide prevention zone, and if you do not do all steps necessary to try to secure this person’s life, you could be prosecuted or you could be charged in various different ways or be civilly liable’. I need to be able to say, with crystal clarity, You’re no longer in that zone; you’re now in the zone of the Terminally Ill Adults (End of Life) Bill”.
Subtle coercion and the illusion of choice
Appearing on video from New Zealand, Dr Sinéad Donnelly, a professor of palliative medicine, described for the committee how the introduction of assisted dying had changed the provision of end-of-life care using her own research and real-world examples.
In a written statement, Professor Donnelly said that the undermining of palliative care is not a hypothetical risk but a sad reality. Ten years ago, New Zealand was ranked third in the world for palliative care. Since then, it has fallen to 12th place as a consequence of reduced funding relative to a growing demand. Assisted dying is, however, fully funded and is given priority over other elective procedures. It has also pulled attention and funding away from the provision of high-quality palliative care for everyone, and, she argued, in many cases has increased suffering.
She believes that the inequity of the current funding model creates a subtle coercion where patients, weighing up the social and financial factors arising from the different approaches, decide according to these factors.
“The subtle things can make a big difference,” she told Baroness Scotland. “Coercion is not a big example of, ‘I want you to go and have assisted dying’ or, ‘I will remove your money’. It is simple things like—this is a true example—a sister saying, “Why don’t you consider assisted dying?” The patient had never considered it. On reflection, he was devastated that his sister suggested that, but then he proceeded to do it. It is very subtle, but we all know human nature. We all know the way we interact with each other and the way we are influenced. Coercion happens on a very subtle level. That is a great concern to me.”
“Then there was the illusion of choice. Patients have told the palliative care team that the reason they are choosing assisted dying …is that a family member said in front of them, ‘I can’t look after you any more’. The patient did not want to go to a rest home, a nursing home, so they applied for assisted dying, and that was the reason: that they did not have someone to look after them…
“As another example of a patient with a similar reason, their partner did not want the nurses coming into their home, and the patient wanted to die in their own home… but they required nursing care. As a result of not being enabled to have nursing care in the house, they chose assisted dying. It is this illusion of choice.”
Inevitable expansion
Simon O’Connor, a former member of the Health Committee of the New Zealand Parliament, also appearing via video link, warned that legalising assisted suicide would inevitably lead to expansion. Referring to similar experiences across the world, he said that protections come to be seen as prohibitions and expansion is required to ensure further access.
“Once you start down this road, as New Zealand did… when it hits the real world, expansion will occur. That is exactly what is happening here in New Zealand.
“…it always starts as a discussion about very serious health conditions, particularly the major neurological ones, but very swiftly the conversation moves into matters of justice, equity and access. You have heard also that we need to get rid of safeguards because they are deemed as too onerous and so forth.
“Again, it is an inevitability. In New Zealand, there is a call to get rid of the six-month protection and to allow doctors, in their position of power, to seed the ideas of assisted suicide. Here in New Zealand, too, if I might, they are also looking again—the witnesses have hinted at this—to remove conscience rights from doctors. The great irony, if I might finish on this point, is that autonomy is put forward as one of the key reasons to have assisted suicide, and yet there are calls here in New Zealand to have the strong coercive arm of the state appear and force doctors, nurses and hospices to participate in some way. Those are some of the proposals that have been put forward,” he said.
Children will be affected
The only amendment made to the Bill despite the opposition of Kim Leadbeater, was the prohibition of doctors raising the topic of assisted suicide with anyone under the age of 18. However, as Rachel de Souza, Children’s Commissioner for England, told the committee, this does not mean that the passage of the Bill will not have a significant impact on children.
“They are the children I am worried about: children with special educational needs, children who are already in hospital with life-limiting diseases, children who have EHCPs—education, health and care plans—that provide support for them until the age of 25. The reason they do that is that they are vulnerable, whether it is mental health concerns, whether it is because they have had terrible lives and might have all sorts of problems, including suicidal ideation. It is a real concern.
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“This is a sensitive topic for me. Sometimes doctors get it wrong. Sometimes you are told you have six months to live, and you have a couple of years. I think they are missing out. I think this Bill will influence them. It is difficult to explain.
“I have one child who says, ‘I’m in care. I’ve got disabilities. The Government will pay for me to die under this Bill, but it won’t pay for me to live’. There are some deep concerns from children, and we need to hear them, listen to them and answer them.”
Baroness Hayter of Kentish Town
Reacting to the suggestion that the age of eligibility be raised to 25, Baroness Hayter, in what was perhaps the most disgraceful episode of the entire committee process, directed a line of questioning against Dame Rachel de Souza, in which she effectively accused her of a callous indifference to the suffering of a hypothetical 18-year-old with a terminal illness.
Baroness Hayter: My concern is that you seem to be saying that you did not want assisted dying to be available to someone, even at 18, who would not be reaching their 19th birthday. You are saying, I think, that that group, no matter how much suffering, pain, whatever, they are going through, just have to suck it up, basically.
Dame Rachel de Souza: No. What I am saying is, working with those most vulnerable groups of children that we talk about, I am concerned that, if they have not had good experiences, proper support, we should be supporting them to try to live that one precious life they have got as well as they can.
Baroness Hayter: However much distress, however much pain, and however much they beg, ‘Just finish it’, you would say no, they cannot.
Dame Rachel: I have seen so many young people who tell me, 10 years later, 15 years later, “I am pleased I didn’t act on that”.
Baroness Hayter: I am talking about someone who is dying within six months. They are 18. They are not going to get to their 19th birthday. No matter, I think you are saying, how ill, how much suffering, how much they are under oxygen, you would deny them the ability to finish their life early.
Dame Rachel: I am saying, ‘Let’s be cautious’, because my experience in Canada made me think, if you are cautious and pull back, that is different to starting in a place that can take you places you do not want to go. I am worried about that. I am worried.
Next steps
This week’s sessions concluded the presentation of oral evidence before this special committee. As in previous weeks, witnesses presented a wealth of material that highlighted serious flaws in the Bill. The next stage in the process begins on 14 November when a committee of the whole House of Lords will consider further amendments. This will continue each Friday until 12 December.
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