(1 week, 5 days ago)
Lords Chamber
Baroness Cass
Baroness Cass (CB)
My Lords, I will be brief, because I believe that my Amendment 122 and the consequential amendments that follow it address a very straightforward and practical issue—saying that could be the kiss of death, but never mind. It is absolutely self-evident that, if this Bill passes into law, the monitoring of its implementation will be absolutely crucial.
There are several aspects of implementation that we will need to follow closely. The first is any evidence of the concerns that have been widely expressed in this House of coercion, particularly to take account of differentials in the socioeconomic circumstances of those seeking assisted deaths. Secondly, we need to be aware of postcode lotteries in implementation and particular challenges in staffing and delivery in certain localities. Thirdly, we need to be aware of creep, as has occurred in other jurisdictions.
In a later amendment, I have proposed that voluntary assisted dying services should be commissioned by the specialised commissioning team currently located in NHS England. This team commissions highly specialist small volume services, and the assisted dying services would fall within this definition. The advantage of this approach is that there would be a national service spec, nationally defined workforce requirements and quality standards, and monitoring of the contract by the national team.
In late January, the noble and learned Lord, Lord Falconer, notified us of his planned amendments to ensure that the service will be regulated by NHSE or the CQC, or both. However, it is not yet clear how that might work in practice. This leaves us with the currently proposed arrangements in Clause 4, in which the voluntary assisted dying commissioner has a dual role. He or she is required to take on much of the operational delivery of the process and, at the same time, monitor the operation of the Act and report on it to national authorities. I submit that it is not appropriate for the commissioner to be both poacher and gamekeeper and to mark their own homework, because they will be mixing their roles as shamelessly as I have just mixed my metaphors.
My amendments therefore seek to separate the role of the commissioner, to make it much more like that of the Children’s Commissioner, who is fully independent from the agencies she has oversight of, with a director to undertake the delivery aspects of the work. These may or may not be the finally agreed terms or mechanisms, but I think the intent is clear, and I leave it open to both the noble and learned Lord the sponsor and other noble Lords to discuss other ways in which this separation of roles might be achieved.
My only other point is to draw attention to my Amendment 131, which makes it clear that, although the commissioner is supposed to be an individual who has held high judicial office, neither the commissioner nor the director is discharging a judicial function in undertaking their responsibilities under this Act. On this point, I am just a warm-up for the noble Lord, Lord Weir of Ballyholme, who will doubtless speak further to his Amendment 129 on this aspect. I beg to move.
I will speak briefly to my amendment in this group because it is my duty shortly to chair the Committee. To broaden the debate that the noble Baroness, Lady Cass, introduced, I simply say that there is clearly a need to establish that this post can have confidence and a degree of consensus around it. I am not sure that that has been achieved by what has been proposed so far.
My amendment simply brings in the procedure used in the Commons for most regulatory posts: they are the subject of some sort of hearing process by the relevant Select Committee. That system was developed in the years when I was in the Commons, and as chair of the Justice Committee I operated it several times. It works reasonably well. In rare cases, the Treasury Committee, for example, has a veto on the appointment, as this amendment suggests, but it is a means of trying to ensure that the right questions are asked at the right time when appointments are made. Surely, after recent weeks, we have learned the lesson that, if you do not have proper scrutiny of appointments and a system in which the right questions are asked, things can go very badly wrong. We certainly do not want them to go badly wrong in this area. That is sufficient to explain what my amendment is about.
I apologise. I will talk about it in group 3.
Baroness Cass (CB)
Long speeches are unpopular at the best of times, but particularly as I now stand between noble Lords and lunch, so I will try not to make one. It has been a very useful group. We have had a lot of discussion about the appointment process, transparency, conflict of interest and how we ensure public confidence in the commissioner. I think we have reached a conclusion on that—one which may not satisfy everybody, but we have come to a place on it.
Beyond that, a lot of the concern has been about things that fall through the cracks, such as my noble friend Lady Freeman’s concerns about patient information, data, risks and patterns in care homes, and family involvement, which is important. My reflection is that I accept the noble and learned Lord’s view that we do not need to separate a delivery and a monitoring role, but it still seems as if the assisted dying commissioner, even acting with the greatest integrity, needs eyes in the back of his or her head to pick up on issues such as local fluctuations or other aspects of concern. I look forward to hearing about other ways in which things are going to be monitored carefully, whether by the CQC or NHS England, as the noble and learned Lord suggested, so that we can be reassured on those matters. With that, I beg leave to withdraw Amendment 122.
Baroness Cass (CB)
My Lords, I rise very briefly to draw attention to Amendment 928 in the name of my noble friend Lady Hollins, who cannot be in her place today. There are two ways of getting additional expertise: one is through consultation and the other is through having additional experts on the panel. Her amendment provides for having a safeguarding expert, a physician and a clinical psychologist on the panel, and she sets out the qualifications for each of those individuals. That would give a greater pool of expertise that could be selected from, appropriate to the needs of the particular person whose circumstances were being considered.
My Lords, I will focus my remarks on Amendment 462B, in my name, and support Amendments 463, 464 and 465, to which I have attached my name. Like my noble friend Lord Murray of Blidworth, this is the first opportunity I have had to contribute to this Committee’s deliberations and, like him, I last spoke on Second Reading.
The amendment requires a public notice to be issued 28 days before the panel intends to sit, which would enable members of the public to attend and potentially engage with the proceedings. I want to say in advance that this a probing amendment. I understand further work would need to be done, probably through regulations, to specify what any notice must entail and consider any further matters around privacy. I am open as to whether 28 days is the right notice period. Amendment 439, in the name of my noble friend Lady Maclean of Redditch, does a good job of addressing many of these concerns, in a way that aligns closely with existing practice directions in the Court of Protection.
However, those caveats aside, I trust that this amendment probes an important point. Schedule 2.6 states that:
“Panels are to determine referrals in public”,
but the public nature of the panel is surely illusory if interested parties are not notified that a panel hearing is taking place. How would anyone know when and where to turn up? I do not think we can gloss over this as a minor omission. Giving evidence to the House’s Select Committee, at page 143 the Law Society listed this issue among the things it is “really concerned about”. As it explains, it is unclear at the moment where the panels will be held and how people will know about them. That needs to be clarified and further information needs to be provided.
The point was also well made by the late Sir James Munby, the former president of the Family Division, whose comments continue to have an important influence on our deliberations. He described the Bill’s silence on a notification mechanism as “an astonishing omission”. He went on:
“Quite apart from all the other reasons why it might be thought desirable to make such provision in the Bill, the participation of others is necessary if the process is to have that degree of rigour which is essential if it is to be capable of identifying and preventing possible abuses, and in particular be adequate to detect what may be very subtle external pressures, and if it is to command public confidence”.
He was absolutely right. Supporters of the Bill have talked about how they intend this proposed law to bring end-of-life decisions “out of the shadows”. However, as drafted, the Bill provides for individuals to die in secrecy with the intentional assistance of the state. We cannot ignore the impact that this secrecy will have on the grief of families who hear that their loved one has died by assisted suicide only after the event, particularly if they possess relevant facts such as evidence of coercion or mental illness. The Committee may be aware of the tragic death last year of Maureen Slough from Cavan, Ireland. Her family reported their devastation at being informed of their mother’s assisted suicide via a WhatsApp message from a Swiss clinic. The same message also informed them that her ashes would arrive by post. The circumstances behind Ms Slough’s death were even more tragic. First, her brother, a UK solicitor, said Maureen had provided the clinic with “letters of complaint to medical authorities in Ireland in respect of bogus medical conditions” which the clinic allegedly used to support her application. Secondly, the clinic claimed to have received what appears to have been a forged letter from her daughter Megan, acknowledging her mother’s plans. These details, together with the fact that Ms Slough had long struggled with mental illness, suggest that there were potential red flags which may have been identified had the family been duly notified.
While supporters of the Bill may argue that the panel process is designed precisely to avert this kind of situation, I respectfully ask how we can be so sure. Remember that the panel operates on only a civil level of proof—in other words, on probability. To use an example from Ms Slough’s story, it is likely that the panel would have concluded, without hearing Megan’s claim that she did not write it, that the letter was more likely to be a forgery and so warrant further investigation. Perhaps so, but we cannot be sure and that is the problem.
We must also consider the importance of notification in light of the Bill providing no clear mechanism for families to intervene at a later stage once an eligibility certificate has been granted. To refer again to the late Sir James Munby, in his very eloquent words,
“the Amended Bill is entirely silent as to how the panel is to deal with the kind of issue exemplified by the Canadian case of AY v NB … where the patient’s partner intervened and obtained an interim injunction because of concerns about what was happening. What if the patient’s partner and relatives, excluded from participation in the panel process, discover, only after the panel has granted a certificate … facts of the kind which in AY v NB prompted an eleventh-hour intervention by the Canadian judge?”
This is a major hole in the Bill and, as it stands, if interested parties are to intervene, it must be at the panel stage and they must be informed of the panel meeting so that they can apply to submit evidence as necessary.
Finally, I want to address concerns that some noble Lords may have around the amendment’s requirement to publish the names of people referred to the panel and the potential impact this may have on privacy. I have thought long and hard about this. As I alluded to before, there is great merit in the proposal by my noble friend Lady Maclean in Amendment 439. However, one weakness is that it requires the commissioner to notify any other person properly interested in the welfare of the person. There is no clear way of establishing who they might be. How is the commissioner to know which friends to contact? One may just have vital information. Therefore, there is a benefit in requiring a more general notice.
I also observe that there are times where public interest is so great that it outweighs privacy concerns. Marriage, as a public institution, is a good example of this. I based the amendment on its notification requirements. In that context, the interest that we all have in defending that public institution means that a general notice is issued so that anyone can come forward with evidence of coercion or any other legal impediment. In considering public interest, we need to appreciate what is going on here.
In the words of my noble friend Lady May of Maidenhead at Second Reading, this Bill gives the state a licence to kill. Whatever our views on the subject, in handing the state this power there is surely great public interest in demanding maximum oversight and safeguards. The panel process should not be seen as totally analogous to the situation in the Court of Protection, where greater anonymity protections would normally apply. It is important to note that most cases in the Court of Protection involve patients who clearly lack capacity and have not consented to the process. Instead, cases usually involve best interest disputes between families and medics. However, in this process it is a basic requirement that the patient be able to consent.
In closing, I add this. Even if the House desires a more anonymised process, we need to debate the details of it. What restrictions would there be on media reporting? Who would determine the circumstances in which these restrictions apply? Perhaps the noble and learned Lord, the sponsor, can address these issues in his remarks. Without answers to these and other questions, the Bill risks the assisted suicide process being more shadowy and less transparent than would apply in cases in the Court of Protection. I do not think that this is acceptable.
(2 months ago)
Lords ChamberMy Lords, I speak as a member of the Select Committee that your Lordships’ House decided to convene at the end of Second Reading, partly because, although I am sure that noble Lords participating in this debate and this legislation will be fully aware of the evidence we took, this debate is broadcast and followed much more generally, so I think it is useful to put on record some of that evidence. We took evidence on palliative care from experts, some of whom oppose the principle of assisted dying and some of whom do not, but almost all raised concerns about the adequacy of palliative care in the United Kingdom.
In particular, following the contribution of the noble Baroness, Lady Brown of Silvertown, I quote— I apologise for reading, but I am reading from our report—Dr Suzanne Kite, president of the Association for Palliative Medicine of Great Britain and Ireland:
“Throughout this debate, there has been a strong consensus that current palliative care provision is inadequate, with many services under threat, and that this constrains choice at the end of life. We advocate strongly for the Government to commit to a national policy to ensure universal access to palliative care that is protected from negative financial impact of the introduction of any AD—assisted dying—service, better safeguards for patients, care workers and organisations and a public awareness campaign about normal dying”.
My first question is to the Minister. I realise that she is representing the Ministry of Justice rather than the Department of Health, but I hope she may nevertheless be able to respond. When we discussed the business Motion in the Chamber yesterday, the noble Lord, Lord Stevens of Birmingham, said that the Minister in the House of Commons had suggested that the Government’s next information about the provision of palliative care would not come until after the assisted dying legislation had gone through Parliament. I think many people, whether or not they support the principle of assisted dying or support this legislation in principle, would feel much relieved if they could believe that palliative care was going to be more equitable across the country and that those in more deprived parts of the country would have the same access to palliative care as those in more affluent parts, because there is a disparity.
For many, there is a concern that the choice of an assisted death, which is what advocates of the Bill say they support, will not necessarily be an unconstrained one. If the choice were, “I have been offered everything, including state-of-the-art palliative care, and I still want an assisted death”, that would be quite different from the current proposals. Clause 5 says that the medical practitioner would need to make clear to somebody in a preliminary discussion all appropriate palliative, hospice or other care that is available. But if there is not adequate palliative care available—we know that 100,000 people are already dying without adequate palliative care—then the choice the medical practitioner is giving will not be a real one.
When I raised concerns with the experts who were giving us evidence on palliative care and whether this was a constrained choice or not, there was very much a sense from Dr Kite that she shared the concerns I had raised about the disparities of palliative care and that, for some people, there would not be a real choice. Her response was:
“I share your concern. Our members share your concern. This is fundamental to our position on the Bill”.
Professor Katherine Sleeman, who is also a professor of palliative care at King’s College London and a member of the Complex Life and Death Decisions group, who is not opposed to the principle of assisted dying, said that my point was
“exactly why the CLADD group has suggested that offering a referral to specialist palliative care is not enough. Everyone who says that they want an assisted death should receive a palliative care assessment, and that would go some way—not all of the way, but it would go some way—to addressing what we know about the inequalities in terms of access”.
In light of the evidence we received, I would be grateful to hear from the noble and learned Lord, Lord Falconer of Thoroton, how he would respond to the amendments in this group about palliative care. They seem to be fundamental to the concerns not just of people who might be opposed in principle to this Bill but of experts who really understand the detail. It is surely the duty of this House to ensure that any legislation passed really meets appropriate standards, and we should be very cautious about supporting legislation that does not ensure adequate access to palliative care.
Baroness Cass (CB)
My Lords, I will be brief, because many of the points have been made, but I would really like to make two points. My first point follows the comments of the noble Baroness, Lady Smith, about—I hesitate to use this term—“levelling up”. We know that there is a spectrum of provision available, not just in palliative care but in all the other aspects of care that a dying patient needs, as referred to in Amendment 221 in the name of the noble Baroness, Lady Hollins. I would love there to be the kind of wraparound care within the community that my noble friend Lady Gerada described, but for some patients that is not the case. So, specifying those components that should be available and making them available should be the basic right of every dying patient, particularly one who is carrying as onerous a decision as seeking an assisted death.
But I think the second, and equally important, point about this is front-loading the multidisciplinary assessment, and, ideally, having it clearly written down and held by the patient, which empowers the patient to hold that information and take it with them. Therefore, it facilitates the co-ordinating doctor, the independent doctor and the panel or judiciary process to have available that information from the team who know the patient best, so that they are not having to delay the process by scurrying around in hospital notes or seeking additional information late on in the process, when the patient will inevitably have made a decision, potentially with their family, and a delay due to missing information would be unbearable. So, front-loading is absolutely key to streamlining this process throughout.
My Lords, I have put my name to nine amendments in this group and I declare my interest as an unpaid trustee of a hospital which has a hospice attached to it.
We are very fortunate in your Lordships’ House to have among us distinguished doctors who have spoken with great experience and understanding of the need for access to expert palliative care when a person faces death from terminal illness. For many people, particularly those in care homes, such palliative care is simply not available. I think of my own mother, who died just three years ago and was in a care home, and for whom such care was provided either by the GP or by paramedics who came and administered morphine—that was not expert palliative care. Many people, if this Bill is passed, will be in exactly the same position as my mother, unless there is change to the current systems. Expert palliative care, as has been said, is unavailable in many parts of the country, and so it is not enough to know that expert palliative care could be available, it must be available. That is the most significant thing.