Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateLord Bishop of Gloucester
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(1 day, 19 hours ago)
Lords ChamberThat is a very helpful intervention, and I absolutely accept that. I understand that that is the way it works. Certainly, with the way the NHS works now, you can go on to the NHS app, which many noble Lords may use, access your own patient record and see all those various notifications registered. He is absolutely right that a flag would be raised; the problem is that there is no requirement in the way the Bill is drafted at the moment for that GP practice to do anything as a result of that flag being raised—none at all. I think there should be. We can come on to that, as we progress through the Bill, when we get to Clause 10. That is the point I was trying to raise.
I do not want to go over my time, but I will deal briefly with the points by the noble Baroness, Lady Winterton. I agree with her. It is right that the House scrutinises the Bill properly. If you look at the number of days of debate in the House of Commons, I think there were 11 days in Committee. If you look at the normal way this House conducts itself—because we tend to do a more detailed level of scrutiny than the House of Commons—you would expect, as a rule of thumb, about 16 days of debate in Committee; then we normally have 50% of that on Report and at Third Reading. I do not disagree with her. It may be that this Bill requires more time, and that is clearly a discussion for the sponsor to have with the Government Chief Whip about making that time available. But I think the wrong response is for us to not do our jobs properly, not scrutinise the Bill and not make sure that it is a properly fit piece of legislation to get on to the statute book. That would be the wrong response. If we were to do that, we would be failing in our duty to legislate properly for the people of this country.
My Lords, I will speak to these amendments because I want to make a new point. A very vulnerable population that we must continue to remember is the prison population. Although we will deal with the prison population more fully in the group coming up, we must remember that this Bill currently does not exclude prisoners from being eligible. That means we must consider how each issue is likely to play out in a prison setting.
As we have heard extensively, these amendments deal with two main issues: first, access to primary care; and, secondly, how well that primary care physician knows the details of your medical history. The first is very closely related to inequalities and making sure that those who have worse access to care are not more likely to choose assisted dying. The prison population are therefore a key group that must be considered, since their health and access to healthcare are worse than that of the general population. That is evidenced by the recently published report by the Chief Medical Officer.
That report also highlights access to healthcare for those in prison. There is no automatic or compulsory enrolment of prisoners into primary care on the prison estate. Over 20% of the prison population do not complete registration on arrival. For those who do, the service is often slow or inaccessible. According to the Nacro report on physical health in prison, two in five prisoners waited for a month or longer for a GP appointment and one in 13 never got one. According to the Chief Medical Officer’s report, one in three prisoners does not have their full electronic health record available to prison healthcare staff. These are not just statistics. When I visit and talk with prisoners about their well-being and purpose, access to healthcare is always spoken about.
Briefly, I do not believe that the issue of how well a primary care physician knows your medical history has been sufficiently considered from a prison context. If a GP may be the person to conduct a preliminary discussion to consider a person’s application for an assisted death, how will they do that safely with incomplete information about their patient’s health record? We must question eligibility along these lines. Before we talk about the next group of amendments, I hope that there will be important safeguards for prisoners on the issues raised in this group.
My Lords, the noble and learned Lord has already been very helpful in the undertakings and clarificatory comments that he made earlier in the debate, so I shall be very brief. In following up those comments, I will return to the question that I raised on the previous group. The Bill seems consciously to steer clear of insisting that a person’s GP must always be involved in the process being pursued by that person in seeking an assisted death, other than the GP having a duty to note in the patient record that the preliminary discussion has taken place. The entire process, in other words, could be conducted by the patient in conjunction with hospital-based medical consultants.
Do I understand correctly that the noble and learned Lord is willing to look closely at ways of making sure, by whatever means, that the crucial judgments made by clinicians about a patient’s capacity, about coercion and about that person’s settled wish to end their life are firmly and soundly based? The route to achieving that may well be the GP practice and the multidisciplinary team within it, but, as we have heard, that source of information may not be practical or useful in every case. Will the noble and learned Lord therefore ensure that he will consider more generally in the round possible safeguards that will forestall the possibility of superficial or cursory assessments being made—especially, perhaps, assessments by hospital consultants, who may have enjoyed only a brief acquaintance with the patient?
My Lords, I will speak to Amendments 30A and 119A in my name, which relate to children and young people who are under an EHCP. I offered to withdraw these two amendments in order to shorten proceedings; by putting that on the record, I will shorten the meeting offered by the noble and learned Lord, Lord Falconer, but not necessarily these proceedings.
I am grateful to my noble friend Lady Coffey for spotting a typo in Amendment 119A—ECHP instead of EHCP. Please may we not create any more quangos with that combination of letters?
The Select Committee heard from Dame Rachel de Souza, the Children’s Commissioner for England, about the basic policy reason behind some vulnerable adolescents and those with additional needs being under her jurisdiction until they are 25: they need the extra support to transition into adulthood. Amendment 30A would remove all young people under an EHCP from the Bill; Amendment 119A on this policy ground would mean them falling under the Act, but with additional conditions. Such an issue may be additional subject matter for the promised meeting. Would these be the right conditions, were we to accept Amendment 119A?
The Children’s Commissioner’s jurisdiction also covers anyone under the age of 25 who has ever been in care. She has a specific responsibility for children up to the age of 25 who have an EHCP. I note that, in law, it is not 18 for all purposes. You cannot adopt children until you are 21. So, at the moment, the Bill does not produce a cliff edge at the age of 18.
Some of the young people on EHCPs may lack capacity and are, therefore, outside the scope of the Bill. As the noble Baroness, Lady Hollins—she is no longer in her place—has often said, assessing the capacity of people with learning disabilities is a complex matter. However, many young people are on an EHCP because of other additional needs or considerable childhood traumas; they will have capacity and will, therefore, come under this Bill. It is again relevant to think of them at 18 years and one day old, and with a life-limiting condition. Sadly, due to the lack of the usual pre-legislative processes of consultation, a White Paper and scrutiny, we are without the data on these vulnerable groups showing how many in the EHCP or under High Court DoLS also have life-limiting conditions. That data would give us an idea as to the priority of conditions for different groups.
In the Select Committee, Ken Ross of the Down’s Syndrome Association stated that people with Down’s syndrome cannot always fully comprehend complex decisions and have very suggestible minds. This is why there are additional safeguards in the EHCP, but if they have capacity, they are under the Bill currently without any additional safeguards.
Again, due to the process of the Private Member’s Bill, it is not clear how this legislation sits with other legislation and safeguards. Has the Bill been considered by the Department for Education, which has responsibility for children under the 1989 Act? Has the noble and learned Lord met with those Ministers? For instance, just to give an array of possible problems, in many cases local authorities legally still have a role for those under an EHCP after the age of 18. How will that fit with the processes outlined for assisted dying? Will there be a clash of decision-making from the EHCP special educational needs panel and the TIA panel?
What legal authority does the local authority have on safeguarding grounds to intervene in the panel’s process for a young adult on an EHCP if it disagrees with the assessment by the panel that the young person is making the request for assisted dying due to peer pressure or, as Ken Ross suggested, an enhanced susceptibility to pressure from white coat syndrome for those with Down’s syndrome? Is it mandatory for the TIA panel to get information from the SEND panel? Can the SEND panel appeal the decision to grant assisted dying? It seems not, so the family and the local authority will be left with the expensive and difficult remedy of judicial review.
Has the noble and learned Lord considered the evidence from the British Association of Social Workers? It states that the panel needs the power to do its own safeguarding assessments, or the power to close a case a local authority is seized of under Section 42 of the Care Act 2014. Otherwise, assisted dying could be granted and there could still be an open safeguarding case at the local authority unless the panel has the power to investigate and close it. These issues would have been flagged on a government write-round or during proper pre-legislative scrutiny. I am disappointed at the lack of meetings so far, as we need a proper process to consider the position of many vulnerable 18 year-olds on the day after their 18th birthday.
Bearing in mind Amendment 22, which the noble Baroness, Lady Grey-Thompson, mentioned, I wonder whether she, the noble and learned Lord or the Minister are aware of whether the policy decisions made for pregnant women in other jurisdictions are based on policy alone or on clinical evidence. If there is clinical evidence that drugs can promote and induce labour, is that why other jurisdictions have taken pregnant women out? That is relevant, because I have amendments later in the Bill about warning relatives of complications, especially if there is going to be a person under 18 present while assisted dying is being given.
Finally, on the points raised at the start of the proceedings by the noble and learned Baroness, Lady Butler-Sloss, I did not have the benefit of listening to the “Today” programme, but we are dealing with so many groups of vulnerable people. That is because of the lack of pre-legislative steps that we usually have. Groups would have been consulted and there would have been a White Paper. I have been exchanging optimistic emails with the noble Lord, Lord Carlile, but for me personally it is an open question, bearing in mind the lack of pre-legislative scrutiny, whether the Private Member’s Bill process actually fix that.
I know that the noble and learned Baroness worked with the noble Baroness and that she is very fair-minded, but I have had cause to look at the evidence from the Jersey States Assembly, a small Parliament. It was drawn to our attention in the Select Committee by Alex Ruck Keene KC that some instructions went to 200 pages, so I asked the Library to do some research and the Jersey parliament’s process is gold-plated. Not only that, but its website is much easier to use than parliament.uk and one can look at the process and timetable from 2021. When the States Assembly approved what it was going to do, the Executive—the Minister for Health and Social Affairs—gave drafting instructions to parliamentary counsel. To write a piece of legislation fit for purpose, they ran to 201 pages. We say that we are the mother of Parliaments in the Commonwealth context, but that is the way to legislate. I keep open in my conscience whether this process can fix the problems with the Bill which are such that none of the royal colleges is currently supporting it.
My Lords, I speak to Amendment 22 in the name of the noble Baroness, Lady Grey-Thompson, to which I have also added my name. I declare my interest as Anglican Bishop to prisons in England and Wales.
There are many reasons why I believe that assisted dying may not be a fair choice for the general population, as things stand, but today I am shining a spotlight, as has already been said, on the prison population. I do not think that there has been enough attention in the debate so far on how the Bill would function for those in prison. I do not apologise for having spoken about prisons in the previous group, because this Amendment 22 is about excluding prisoners from the Bill, but the previous group of amendments assumed that prisoners would still be in the Bill. Therefore, we still need to look through that lens when we are discussing issues about GPs and medical records.
The prison population is in worse health than the general population. We have heard that. However, the reports from both the Health and Social Care Select Committee in the other place and the Chief Medical Officer paint a more concerning picture than that. Age-related illnesses, dependency and frailty can begin at an earlier age than in the general population. The prison population is ageing faster, and when I am visiting prisons I never cease to be shocked by the number of extremely elderly and frail people in prison. In most places, the prison system is not able to meet their needs properly—and that is not to criticise the prison staff, who are doing their best.
Nacro reported that, in 2019-20, people in prison missed 42% of scheduled hospital appointments. The Health and Social Care Select Committee goes as far as to say that
“so-called natural cause deaths, the highest cause of mortality in prison, too often reflect serious lapses in care”.
As has been said by the noble Lord, Lord Farmer, there is a lack of palliative and end-of-life care in prisons and, although there are some examples of excellent practice, action to improve this is voluntary and not supported by the commissioning of services.
Noble Lords may well say that prisoners should have equal access to care under the law, including assisted dying but, as has already been said, they do not currently have equal access to care. For me, this is not simply about the prison system and healthcare; it is about the perspectives and sense of well-being among those in prison. I will not rehearse everything that has already been said, but will just reiterate that the prison population experience high levels of hopelessness. We have frequently and rightly spoken about IPP prisoners in this House.
Again and again as I visit prisons, I hear about and see evidence of the high levels of self-harm in our prisons; it is particularly high in the female estate. Self-inflicted deaths in prison are predicted to continue to rise disproportionately compared to the general growth of the prison population. We need to be cognisant of the fact that, during the special Select Committee on the Bill, the Royal College of Psychiatrists talked about how a person’s wish to hasten their death can be impacted by what their life is like.
Although compassionate release is an option, it is rarely taken up. Crucially, according to Macmillan Cancer Support’s A Guide for Prisoners at the End of Life, it also requires a three-month prognosis. How does that interact with the Bill?