Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Pidgeon
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(1 day, 8 hours ago)
Lords Chamber
Baroness Pidgeon (LD)
My Lords, it is essential that, as we debate this group of amendments, we keep in mind the fact that the systems that we are creating are for people in the last six months of their lives. We must balance the demands that we place on them at this very vulnerable time with what really matters to them during that time. We should stop talking about microprocess and start really thinking about the individual. In her evidence to the House of Lords inquiry in November, Dr Jessica Young said that
“a system that is too onerous creates stress among the people it aims to serve”.
We must not create a system that is too complex and too protracted for someone who is at the end of their life to deal with.
We have made incredible progress in recent years on facilitating video consultations. That came on hugely in the pandemic. Are we not in danger of taking a retrograde step with these amendments? I fear in particular that we in this House must be careful about standing in the way of technological process. Reading some of these amendments, I wonder whether people might want to add in that we write with feather quills and ink, because it seems that that is what this is really about.
Amendment 65 would mandate a whole range of steps beyond clinical assessments to be undertaken face to face. It also seems to disapply the flexibility provided in the Bill with regards to the person meeting the panel. Is it the intention of this amendment that a person who cannot travel to appointments, whether physically or because of the risk of infection, must be denied a choice over how they die? These amendments will affect hugely those who live in rural areas and far from their GP, let alone a hospital with a relevant specialist. They will affect those whose immune systems have been compromised as a result of extensive chemotherapy and those whose mobility is affected by their terminal illness and who find it impossible to travel. Are we not at risk of denying access to these people when such challenges are not unusual, given the nature of what they are experiencing with their terminal illness? Is it the intention that someone who is, for practical medical reasons, unable to meet the independent advocate or the panel, but is able and willing to do so via video link, will immediately be ineligible even if they fulfil all the other criteria? It is difficult to see a basis on which that can be justified.
Baroness Pidgeon (LD)
I am coming to the end of my speech; I do not think I have to take an intervention, so I would like to finish my point.
It seems to me that this is about making the choice of an assisted death difficult or impossible. We need to think carefully about the checks that we are putting in place for people in the last six months of their lives. We need to make sure that the system really will work for them.
My Lords, we should thank the noble Baronesses, Lady Gerada and Lady Pidgeon, for raising important counters to a lot of these contributions, because it is important that we do not fetishise face-to-face communication as infallible. It offers no guarantee that comprehension happens, that people listen and that there is no misunderstanding. We should know that because we sit face to face in this Committee every Friday and goodness knows it has not guaranteed much of that.
I have put my name to several of the amendments in this group because, despite what the noble Baroness, Lady Pidgeon, just said about how we must make this as easy as possible for people with six months to live, the Bill’s sponsors have rightly built the need for eligibility into the Bill. You cannot just wander in and say, “I’ve got six months to live, get rid of me”; you have to pass the eligibility assessment. We are trying to work out whether face to face as the default would be a better way of guaranteeing that there is no abuse, which is reasonable.
I remember the ITV documentary referenced by the noble Baroness, Lady Coffey, in which I heard the Bill’s sponsor in the other place, Kim Leadbeater, admit that she was uncomfortable with what has been labelled “death by Zoom”—the model that she was watching in Oregon. Despite what the noble Baroness, Lady Gerada, said, it was actually Kim Leadbeater who rightly noted that it looked too much like a tick-box exercise. We need to be wary of anything that goes in that direction, but, because this is what I saw in that documentary, I expected a basic requirement in the Bill for face-to-face assessment, except in exceptional circumstances. So I ask the noble and learned Lord, Lord Falconer, to respond on why the Bill still permits so many encounters with doctors, including the panel, to be conducted remotely, meaning that somebody may access assisted death without having seen a doctor face to face. One might pause on that, at least.
Despite the virtues of telemedicine, of which there are many—we can all see the reasons why, on occasion, it is important, just as we all use Zoom for meetings and so on—this is a question of whether it is superior and whether it can be relied on. The noble Baroness, Lady Smith of Newnham, gave a vivid example in response to the contribution from the noble Baroness, Lady Jay, in which she said, “At least the noble Baroness, Lady Gerada, knows what it is like to be the doctor doing the consultation”. Well, some of us know what it is like to be the patient on the other end of it. To be honest, it is not always a case of “trust the expert” and all that, because there absolutely may be crossed wires, hanging around, frustration and all sorts of things going wrong.
Professor Martin Vernon, who chairs the ethics and law special interest group at the British Geriatrics Society, said:
“Assessing somebody remotely, digitally, without a face-to-face assessment, particularly if they have complex health and social care needs, is nigh-on impossible”.
There is something in that, too, which we should consider. Non-face-to-face Zoom or phone encounters are particularly challenging for certain groups, such as people with communication difficulties. The noble Baroness, Lady Nicholson, reminded us of the issues for people with hearing difficulties in our debate on a previous group. We all know that there are difficulties of language.
Of course, older people are likely to make up the majority of those being assessed for assisted dying. Without wanting to caricature oldies as being technically illiterate—although there is a smidgen of truth there—there is something else to consider. Older people sometimes present their best selves on the phone. They put on their best voice. There is nothing wrong with that, but they chat away as though everything is fine and, even on Zoom, they sit there looking their best.
However, when you see them face to face—I am not now talking about a doctor assessing them—they are dishevelled, pale and frail. Something else happens. Because the assisted dying decision involves highly emotional and existential issues, purely remote assessments potentially undermine the relational aspects of care that will help ensure that decisions are well considered and autonomously made. We have to think about those direct, personal interactions. The noble Baroness, Lady Jay, is right: these are the last six months of your life—allegedly; that is what you have been told. People are vulnerable, distressed and not quite sure. All these amendments are suggesting is that it would possibly be better to see the doctor. If you cannot get there, that is all fine, nobody is being inhumane; but the doctor sees you and assesses what is going on. It is a necessary if not sufficient way of establishing the eligibility criteria.
Finally, the noble Lord, Lord Empey, talked about how this might be appropriate for online legal proceedings. I am sure that the noble and learned Lord is aware of the evidence on the use of video links in court proceedings and trials. In Transform Justice’s survey of court users, 70% of respondents said that it was difficult to recognise whether someone who was on video had a disability, while 74% believed that those who had no legal representation were disadvantaged by appearing on video; in other words, the vulnerable always suffer in those instances.
The report similarly found that there were significant issues in assessing evidence and character. We can learn from other areas, but the main thing is that the default should be face to face. That should be in the Bill. I agree with Kim Leadbeater on that one—that is a headline. I do not understand why, Kim Leadbeater having noted that, it is not in the Bill. There should be exceptions if people are too ill, too far away or having a ball in Tenerife for their last six months. Yes, we get all that, but the default point is: face to face, where possible, as much as possible.