Baroness Hollins
Main Page: Baroness Hollins (Crossbench - Life peer)
Lord Stevens of Birmingham (CB)
As the noble Lord will well know, the ethical principle of the doctrine of double effect is in place there. There is no doctrine of double effect associated with assisted dying; it is a completely different ethical principle. In fact, part of the reason why it would be dangerous to include assisted dying in the National Health Service is because it risks undermining the very trust that people have in their clinicians.
It increases the risk of what you might call self-coercion in the name of altruism. People thinking that they are reducing not only the burden on their families but on the NHS from an earlier death is a genuine risk. We saw that, frankly, during Covid, when the slogan, “Protect the NHS”, was used. A number of us were opposed to that, fearing it would put people off coming forward for needed care, which is precisely what happened. The idea that an NHS-branded assisted dying service might, at least in people’s minds, come to be associated with helping to protect the NHS by virtue of choosing an earlier death blurs the lines, which we should be careful to avoid.
Fundamentally, it is unwise to include assisted dying in the National Health Service because it blurs the distinction between palliative care and what is proposed in the Bill. As we have just heard from the noble Lords, Lord Harper and Lord Deben, many of us have concerns that the choice on offer will not be a genuine choice if palliative care is not available, and I am afraid the Government have been less than forthcoming as to what they envisage palliative care services looking like over the coming years.
Two months ago, I asked the Government a very straightforward Written Question: can they tell us whether the palliative care and end-of-life care modern service framework, which they are going to publish, will quantify the incremental funding needed to make sure that everybody who would benefit from specialist palliative care would get it? I did not get an Answer to that straightforward Question before this House debated the palliative care elements of the Bill. This week, I received a two-sentence response—it was not an Answer —which said:
“The Government is developing a Palliative Care and End of Life Care Modern Service Framework for England. I refer the Noble Lord to the Written Ministerial Statement … on 24 November”.
That was the Answer to the Question: will the Government’s framework specify the funding gap, identify funding to meet it, and ensure that people have access to care? On that basis, we are entitled to conclude that they probably do not intend to move in that direction. Therefore, the concerns about having an assisted dying service as part of the National Health Service, when palliative care needs go unaddressed, are all the more acute.
For those three reasons—the fact that the proposal is conceptually misjudged, organisationally unnecessary and inherently risky—I oppose the proposition that assisted dying should be part of the NHS.
Baroness Hollins (CB)
My Lords, I support and have added my name to Amendment 771ZA, in the name of the noble Lord, Lord Mackinlay, which would prevent the assisted dying service being part of the NHS. I agree with the points made by my noble friend Lord Stevens.
Integration into mainstream healthcare appears to normalise the practice and lower barriers to the use of assisted dying. International evidence is instructive—where it is embedded within publicly funded healthcare systems, such as in Canada and the Netherlands, uptake rises steadily over time and eligibility criteria broaden. As we know, in some jurisdictions it is available to minors, people with non-terminal conditions, psychiatric diagnoses, and even people with learning disabilities and autism, as my own published research on the Netherlands has shown.
I agree with my noble friend Lord Stevens that assisted dying is not a treatment. That is a further reason why it should never become part of the National Health Service. The substances proposed to be used neither treat nor prevent disease; they fall outside the legal definition of a medicinal product. The drug regimens proposed are unlicensed, have not undergone appropriate clinical trials and lack international consensus. The drugs that have been used more widely and successfully to provide the much-lauded pain-free and quick death, such as in Switzerland, are not even available or licensed for human use in the United Kingdom.
My noble friend Lord Birt seems to seek to introduce similar criteria as are used in Switzerland, and not just for terminal illness—he spoke about suffering, pain, and conditions that are not eligible under the Bill. In Switzerland, non-profit organisations such as Dignitas operate within that narrow but deliberate legal space created by Article 115 of the Swiss Penal Code, which states that assisted suicide is punishable only when carried out for selfish motives. That means that if it is provided purely out of compassion, with no personal gain, it is not a criminal offence, enabling Dignitas and other similar non-profit organisations to function lawfully so long as they can demonstrate altruistic intent and ensure that the individual is acting autonomously.
Interestingly, Article 115 of the Swiss Penal Code, contained only one clause—I think just one sentence—when it became law in 1942. One wonders whether the smoke and mirrors of the 59 clauses in the Bill and the various proposed new clauses from my noble friend Lord Birt disguise a similar intent. The potential changes and development of the proposals before us today are concerning. Indeed, if something as straightforward as is provided in Switzerland is intended, I do not understand why it was not proposed in the first place. We do not want this in the National Health Service.
The Lord Bishop of Newcastle
My Lords, in his opening remarks, the noble Lord, Lord Birt, cited Australia. I am sure that he is aware that no Australian jurisdiction is recognised as one of the 10 comparable jurisdictions in the Bill’s eligibility criteria and the Government’s impact assessment. The most comparable are New Zealand and the United States. This discussion was resolved in our Select Committee by receiving evidence from New Zealand. We need to be consistent and mindful of the Government’s impact assessment and ensure that our comments align with it.
Baroness Hollins (CB)
My Lords, for the purposes of the point I am making, I am going to proceed on the assumption that was put forward by the sponsors that the drugs used for an assisted death are to be treated as a healthcare intervention, although I do not accept that this assumption is correct. If that assumption is made then the legal and ethical standards governing informed consent must apply in full. I added my name to Amendment 55, which would require that the patient understands fully the physiological effects of the lethal drugs used for assisted suicide and their possible complications.
The General Medical Council provides guidance on decision-making and consent to medical professionals. It requires that a clinician must be satisfied that a patient has given valid consent before an intervention unless there are certain legal exceptions, which would not apply to assisted dying. The guidance is explicit about what informed consent requires. Patients must be given clear, accurate, up-to-date and evidence-based information. For every option, clinicians must explain the potential benefits; the risks, including side effects and complications; the uncertainties involved; and the likelihood of success. Where there is uncertainty about outcomes or the quality or limits of the evidence, the clinician has a duty to be open about that uncertainty. Informed consent is not compatible with ambiguity being concealed, minimised or glossed over.
Who provides this important information for the consent process? The MHRA regulates medicines in the United Kingdom by assessing their safety, quality and efficacy before licensing, and by monitoring harms after licensing through the Yellow Card scheme. I intend to return to this in a later group. The GMC is explicit that a clinician should propose or prescribe a medicine or treatment only when they have sufficient and reliable information. This includes agreeing with the patient by giving a clear explanation of the benefits, the risks, the common and serious adverse effects, and what to do if problems arise.
On the drug protocol, there is currently no internationally agreed prescribing protocol for assisted dying. There is a wide range of drug types, combinations and doses being used, with significant variation even within individual countries. Protocols include varying combinations of barbiturates, benzodiazepines, opioids, cardiotoxic agents and neuromuscular blockers. Under the current Bill, the intention appears to be that the drugs to be used for assisted dying would be prescribed off-licence. An unlicensed drug is one used outside the terms of its licensed indication. Under existing GMC guidance, prescribing an off-licence drug requires a clinician to
“be satisfied that there is sufficient evidence … to demonstrate its safety and efficacy”.
However, there is no systematised clinical research, no standardised reporting and marked variability in practice. The pharmacokinetic and pharmacodynamic data available for these drugs individually come from therapeutic use, which is quite different from the very high doses or combinations required to induce death.
The Government’s impact assessment refers to an experimental drug regime from Oregon, one of the few jurisdictions that has published the outcomes of orally ingested approved substances. These drug combinations are not the product of conventional clinical trials but a form of human experimentation that was introduced without prior scientific evaluation and bypassing conventional regulatory frameworks. A combination of four drugs was chosen out of necessity because of restricted access to barbiturates, rather than good evidence of safety and efficacy. Subsequently, a fifth drug has been added in an attempt to reduce the median time to death. Rather than the quick and pain-free death advertised by the sponsors and campaigners, what has been documented are significant adverse effects, as reported by the noble Baroness, Lady Lawlor.
The drugs generally regarded as most effective in assisted suicide are barbiturates, particularly high-dose pentobarbital and, less commonly, secobarbital. These were the agents used in Oregon before restrictions on their export to the USA because of their use in capital punishment. This restriction forced assisted suicide providers to look for alternatives. The barbiturates cause death by reducing brain activity, leading to loss of consciousness and respiratory arrest. They are the same agents used in veterinary euthanasia in the United Kingdom, where they are subject to very strict veterinary regulatory requirements. However, these substances are not licensed for human use in the United Kingdom. They are class B controlled drugs under the Misuse of Drugs Act, meaning that they cannot be prescribed, imported or possessed without Home Office authorisation. The assertions made in the other place and in the Government’s impact assessment that appropriate drugs are already licensed and available for off-licence use appear to be incorrect. I would welcome the noble and learned Lord’s response to this.
Despite this, the proposed approach does not involve licensing by the MHRA, nor appraisal or guidance by NICE, and no clinical trials are required. Instead, the Bill grants the Secretary of State the power to specify the drugs and procedures by regulation, including their manufacture, supply and storage, thereby bypassing the established regulatory frameworks that apply to every other drug.
I could describe what the consent process might look like. When a drug is prescribed for you, you get a leaflet which sets it all out. It tells you what the indication is, what the likely success is and what the most common complications are. One in 10 is very common, and these are the kinds of side effects, complications or adverse effects described by the noble Baroness. Imagine saying to the patient that outcomes are variable, and many complications have been reported, suggesting that one in 10 people who take this combination of drugs may experience vomiting, seizures or may regain consciousness. One in 10 is very common. You would also have to say that there is no guidance or certainty about what support would be provided to you if you experienced these very common adverse effects.
That is what the obtaining of informed consent would look like under the current Bill. That would not be acceptable to any regulator or professional body, or, I suggest, to any patient who had the capacity to consent.
Baroness Berridge (Con)
My Lords, I support Amendment 39A, tabled by my noble friend Lord Blencathra. I am pleased to see my noble friend Lord Wolfson at the Dispatch Box, because although I support the amendment, it is more that it enables us to raise important principles, not necessarily the details.
I am grateful to the noble Baroness, Lady Hollins, for outlining informed consent and mentioning that the patient has to have sufficient and reliable information. The noble and learned Lord’s Bill says that there should be a
“clear, settled and informed wish”.
This is another occasion where I fear that the Bill is legislating for an analogue age. Much of the principle around informed consent comes from a situation where the patient is gaining much, if not most, of their information from the clinician or support staff. That is not the case today. We know that people have access to many more sources of information.
I ask the Minister and the sponsor of the Bill: what is the situation in regard to reliable information or an informed wish if in front of the clinician is a young person who basically has just been watching on a doom loop information that is false? We have the problem now—there may be an issue around the development of the law on informed consent here—of people having a lot of misinformation or false information. From the wording of the amendment, it is not clear what the duty would be on the clinician if they are aware that the person has an informed wish but it has been informed by false information.