Terminally Ill Adults (End of Life) Bill

Committee (7th Day)

My Lords, the noble Lord, Lord Shinkwin, and the noble Baroness, Lady Campbell of Surbiton, will be taking part remotely. I remind the Committee that unless they are leading a group, remote speakers speak first after the mover of the lead amendment in a group and may therefore speak to other amendments in the group ahead of Members who tabled them.

Clause 1: Assisted dying

Amendment 35

35: Clause 1, page 1, line 14, after “life”, insert “, delivered and supported by the Assisted Dying Help Service (see section (Assisted Dying Help Service)) and”

My Lords, I shall speak also to all the other amendments listed in my name and that of the noble Lord, Lord Pannick, who, having assiduously attended our sessions on the Bill thus far, as all will have noticed, deeply regrets that he cannot be present with us today.

Our discussions to date have focused overwhelmingly on risk, and I do not for one moment dispute the necessity and the value of that. I will return to how best we can manage those risks later in my remarks. However, let us not forget that we are not pioneers. Thirty countries, states or jurisdictions across the world have already introduced assisted dying. The first did so over 80 years ago; there has been a steady stream this century and, hot off the press, just two days ago, an assisted dying Bill for the Channel Island of Jersey passed its First Reading by a two to one majority and is expected to pass into law next month. It is therefore at the very least equally important that we do not just focus on risk but lean on the well-established experience of others when considering the critically sensitive matter before us, which we know from serious studies carries overwhelming public support.

For my part, I have been exposing myself to the Australian experience, with considerable help from senior practitioners, for which I am most grateful. Without exception, those to whom I have been exposed come over as deeply caring and enormously considered. What I have learned from them, and from the copious data that is available, is reflected in the amendments before your Lordships today. Much that I have discovered has been surprising as well as enlightening. First, applications for assistance in Australia are not automatically accepted; something like one-third are turned down. Secondly, around 75% of those seeking assisted dying have cancer, and somewhere between 75% and 90% of all those who come forward are already in receipt of palliative care and are more motivated by their distress and misery than by their pain. Although I completely agree with all noble Lords who have stressed how vital it is to have effective, universally available palliative care, it is clear that it is not sufficient for many experiencing truly horrific medical conditions.

My Lords—

No, I am sorry—I have an argument to put; I am not going to take any interruptions.

Furthermore, one of Australia’s most senior and experienced practitioners tells me that, although in theory it must be a risk, she herself has never experienced a single example of coercion. On the contrary, she says, she has on occasions experienced the very opposite: loved ones understandably pressing someone who wants assisted dying not to embark on that course of action. Overwhelmingly, her experience is of applicants who know their own minds and are perfectly able to make a considered decision.

From all my discussions, I have concluded firmly that if this Bill passes into law, it is vital that the processes are based on day-to-day realities, as well as risk, and work efficiently and sensitively for any individual of firm and settled mind coming forward in a state of deep distress. We need more flexibility in the timelines of the process than the present Bill allows and a fit-for-purpose organisational focus that delivers promptly and humanely for individuals in severe need.

In our amendments, the noble Lord, Lord Pannick, and I propose three key measures. The first is to create a new organisation, the assisted dying help service, to enable the individual easily to navigate the complex process set out in this Bill, which in essence we retain. The second is to ensure that the assisted dying process is expeditious and, when conditions demand it, flexible. The third is that the commissioner acts solely as a regulator, with oversight but without any delivery responsibility.

The process currently set out in the Bill involves a 10-stage process, with three separate medical consultations with three different doctors, a confirmatory panel and two periods of reflection, the first of seven days and the second of 14 days, the latter of which can be shortened. Absent a bespoke organisational focus, this process in a stressed NHS could take a wholly inappropriate and disproportionate period of time. Hence our proposal is that we adopt a notion present in many jurisdictions of a purpose-built organisation—an assisted dying help service—that would provide a personal navigator to take the dying person and their loved ones through the whole complex process, providing introductions, keeping to timelines and piloting the individual through their final challenging and traumatic journey. Our amendments also propose appropriate flexibility, at every stage, with safeguards for doctors to act with urgency if the individual’s condition demands it.

The final arguments for a bespoke delivery organisation are based on global comparators. We estimate that, in due course, once the system is well established, something like 7,000 people each year in England and Wales will avail themselves of the assisted dying opportunity. A focused organisation can acquire dedicated medical and other staff, and create a network of consultants, specialists and volunteers to call on, including for instance to provide palliative care. A focused organisation can offer and validate training, issue and update advice for practitioners, and develop appropriate tech-supported systems for managing the complex process set out in the Bill. Absent such an organisation, the provision of an assisted dying service could be chaotic and prolonged.

I will mention two other matters covered by my amendments and those of the noble Lord, Lord Pannick. We propose that, in the first medical consultation, the doctors should take the patient through all the options available, including palliative care and the hospice opportunity. Having sat through the whole Committee stage so far, I have further concluded that, on Report, we should formally build into either the first or second consultation a requirement for the medical practitioner to explore whether the individual’s request is influenced by any of the following factors: an inaccurate prognosis; their vulnerability, particularly resulting from disability; their mental incapacity; their financial concerns; or, finally, their possible exposure to coercion. Moreover, help is at hand from the assisted dying help service, which would offer an alternative to assisted death for anyone found to be at risk in any of those ways.

We also propose that the commission’s role should simply be as a regulator and that its prime responsibility should be oversight of the assisted dying help service. It would ensure that practitioners are compliant with the provisions of the law and that data is collected and trends reported. It would issue guidance and guidelines where necessary.

I hope that the sponsors of the Bill will be persuaded of the benefits of the additional measures that we propose, which no doubt can be improved even further through dialogue before Report, not least with those who have concerns about the Bill. I conclude by asserting that we should put no obstacle in the way of someone of sound mind, of a settled view, in deep distress, with death imminent, being allowed a dignified ending to their life on earth, at a moment of their choosing. I beg to move.

My Lords, I thought we were taking the remote contributors first. If we are not, since there are amendments from my noble friend Lord Mackinlay of Richborough to which I have attached my name—he is unable to be here today; he sends his apologies and has asked me to speak to his amendments—I will speak to Amendments 223A, 223B, 223C, 495A, 771ZZA and 771ZA. For the avoidance of doubt, I am perfectly happy to take any interventions, if anybody wants to ask me any questions, if anything I am saying is not clear or if anyone wants to challenge my arguments.

The primary reason for these amendments, as was ably explained by the noble Lord, Lord Birt, is that the Bill does not really give the patient choice. It is designed to preference one option—that of seeking assisted suicide—rather than to help the patient navigate all the options that may be available to them.

There were limits on the way my noble friend could table his amendments. The advice that we received was that any amendments requiring a personal navigator to help secure or facilitate access to palliative, hospice or other end-of-life care, as an end in itself, were out of scope because the Bill’s collective purpose is provision for assisted suicide, not the wider delivery or co-ordination of end-of-life care. So amendments were admissible only where consideration of alternatives were explicitly tied to eligibility for or progression within the assisted suicide process. If anyone has any criticisms at this stage of the way that my noble friend’s amendments are drafted, I say that they are drafted in such a way as to fit with the advice that we received, so I will be perfectly happy to take criticisms of the drafting on the chin.

I start with a point that the noble Lord, Lord Birt, acknowledged in his opening remarks. He said that it was of great importance that there is universally available palliative care. He went on to say that, in his experience of talking to people, even where that palliative care was available, it did not always do the job that the person required it to. However, he skated over the fact that high-quality palliative care is not universally available. In the debates that we have had so far, to which the noble Lord, Lord Birt, referred, many of us have thought that, if high-quality palliative care is not available as part of the choice that you face, seeking assisted suicide is not the result of a proper, freely reached choice, because you do not have all the range of things in front of you. I think I am right in saying that, when the noble and learned Lord, Lord Falconer, was tested on that, he accepted that you have to make your decision based on the choices that are actually available to you. Many of us think we should actually be trying to make sure that everyone has access to that high-quality palliative care and understanding that should be part of this process.

This is a point of clarification about access to high-quality palliative care. It should also be about timely access, because we know that, even in the parts of the country where high-quality palliative care exists, around 100,000 people do not get it at a time that would amplify it and ensure that they get the maximum benefits.

I am grateful for that intervention; it is a very good point. The importance of it is emphasised by one of the points that the noble Lord, Lord Birt, made in his opening remarks: that many people do not seek to make decisions on these matters until quite late in the process. If you were facing considerable pain as a result of your medical situation, not only might you not think about assisted suicide early on but, if it not available in your area, you may not have sought high-quality palliative care early enough. Again, that needs to be available at pace, as well as the choice of assisted suicide.

The second reason why I think these amendments are important is this. I do not know whether I am the only noble Lord to have thought this, but it does seem odd that what we are, or the noble Lord is, proposing here is a personalised service, I presume funded by the taxpayer—the noble Lord nods his assent—which would support somebody in a very personal, individual way to seek one particular outcome. But as far as I am aware, unless something happens in the National Health Service that I am not aware of, we do not offer a personal navigator to help somebody with their journey through seeking medical treatment that will actually help them live and live well, and it just seems to me a slightly odd sense of priorities that we are proposing to put in place a service that is only available to help somebody die.

I wonder whether my noble friend could think a little bit about the money involved in this. I am sorry—it sounds a bit odd, but I do feel very strongly that we ought to talk about how much all this is going to cost and where that money is coming from. In the very unsatisfactory answers from the Minister, who gave the opinions earlier on in previous arrangements, I asked directly whether she would assure the House that this money was additional money, rather than money that would otherwise come from the National Health Service. I wonder whether my noble friend would think to himself about the extra cost that this would mean. Where would it come from, and why are we not spending it on a lively attitude, which is to help people when they are ill with better palliative care, instead of going in for this death concept?

I am grateful for my noble friend’s comments, and he is right: we had an extensive exchange on this subject on a previous Friday, and I am sure the Minister will correct me if my interpretation of what one of her ministerial colleagues said was incorrect, but it was very clear when I asked whether the Government were going to fund anything in the Bill. The Minister confirmed that, if Parliament were to choose to pass the Bill, the Government would indeed fund it and make sure it could be delivered. But when I asked the Minister whether that funding would be extra funding from the Treasury or would be taken from other parts of the public services—I think this was in the context of the extensive debate we had on the proposals on the court system by the noble Lord, Lord Carlile—it was made very clear that that assurance was not given. I am afraid that the only conclusion I could come to, which was not challenged by the Minister—if she thinks I have got it wrong, she is welcome to intervene—was that the money would come from other parts of the public services.

I have to say for myself that, if this assisted dying navigator proposal were to be funded by taking money away from NHS services to pay for it, I think people would find that quite extraordinary. I personally would find it indefensible that we were, again, taking money away from services to help people live to pay for a service to help them die. That would show a very odd sense of priorities. When the Minister responds, because she is the only one who can answer this question, not the sponsor of the Bill, because he is not, as far as I am aware, responsible for His Majesty’s Treasury, I hope she can tell us—

My Lords, I think I heard my noble friend say that NHS resources should be used just to help people live. Of course, we would all agree that is a very important thing, but surely palliative care is all about helping people to die comfortably, which I think we all believe in as well. Given that, maybe my noble friend would agree that helping people to die comfortably, such as through palliative care, is a very good way to spend NHS resources as well.