The House of Lords assisted suicide Bill select committee held its fifth and final public meeting earlier this month, allowing a select group of Peers to interrogate and cross-examine the Terminally Ill Adults (End of Life) Bill through expert witnesses.
The fifth day took place on Wednesday 5 November. In the first session of that day, Rachel Arrundale, Interim Director of Partnerships at Medicine and Healthcare Products Regulatory Agency; Greg Lawton, Barrister and Pharmacist; Laura Wilson, Director for Scotland at Royal Pharmaceutical Society; Professor Alex Ruck Keene KC, Professor of Practice at King’s College London; Sir Nicholas Mostyn KC, former High Court Judge at HMCTS; Professor Charles Foster, Barrister and Fellow at Exeter College Oxford; Kirsty Stuart, Chair of the Mental Health and Disability Law Committee at The Law Society; and Sir Max Hill KC presented evidence to Peers.
This was followed in the second session by Stephen Kinnock MP, Minister of State, Department for Health and Social Care; Professor Sir Chris Whitty KCB FRS, Chief Medical Officer, Department for Health and Social Care; Jason Yiannikkou, Director for System Oversight and Integration, Department for Health and Social Care; Professor Meghana Pandit MBBS FRCOG MBA, National Medical Director, NHS England; Dame Rachel de Souza, Children’s Commissioner for England, The Office of the Children’s Commissioner; Dr Jeanne Snelling, Senior Lecturer, Faculty of Law, University of Otago; Dr Jessica Young, Senior Research Fellow, School of Health, Victoria University of Wellington; Professor Sinéad Donnelly, Clinical Professor and Module Convenor Palliative Medicine, The Otago School of Medicine; and Simon O’Connor, Former Member of Parliament, New Zealand Parliament.
Witnesses criticise labelling of lethal drugs as ‘medicines’
Expert witnesses discussed the importance of language, in particular, whether the drugs used in assisted suicide should be classified as “medicine” or something else. Greg Lawton, barrister and pharmacist, told the select committee that the definition of a medicine cannot include something that is intended to end a life.
“The drugs being used would not be medicines, if being used to facilitate suicide. Such a purpose is not encompassed by the definition of “medicinal product” in the Human Medicines Regulations and case law. Naturally, when one thinks of a medicine, one does not think of a drug that is designed to cause death. That means that legal provisions pertaining to medicinal products will not apply”, he said.
“It would be somewhat Orwellian to say that a medicine is a drug used to bring about death”, Lawton continued.
Baroness Finlay highlighted that the drugs used for assisted suicide have not been proven to be “safe”, and that there are many instances of people even waking up after ingesting them.
“We know that at least nine people in Oregon have reawakened and seven in California. I just wonder how you would define safety. With other drugs, such as the cancer drugs, that were referred to, there are trials and there is a lot of scrutiny in different stages looking at adverse effects and complications. That is all published in peer-reviewed journals”, she said.
“It has been difficult to find research that shows how these different drug mixtures bring about death and the variation and complication rates”, she continued. “I do wonder what will happen if a person takes only part of the dose. We know that that has happened in some cases because they are drinking a large volume of toxic liquid that tastes absolutely terrible. What happens if they have complications or they should reawaken?”
Decisions around policies and regulations are being made up “on the fly”
Professor Alex Ruck Keene criticised the Bill, saying, “Does it have too few powers to deal with more difficult cases? Undoubtedly. For instance, it does not have the power to call for evidence from a local authority or an NHS body. We have got a system that is – I am trying to think of the right frame – neither fish nor fowl. I would really hope it would be possible, if it is considered to be important, to have a third tier of scrutiny, that someone could take a step back and say, “What does that actually look like? What does it need to do?”, form that policy, and then draft, rather than – and I apologise if this sounds crude – doing it on the fly”.
“[W]e have had policy evolving as drafting evolves”, he continued.
Greg Lawton argued that Clause 37 of the Bill – which concerns regulations for assisted suicide drugs and “devices for self-administration” – is worrying as it delegates “everything to the Secretary of State to decide, without any framework in primary legislation for what would be an entirely new process”.
He continued, “It leaves a substantial blind spot for Parliament. What would the Secretary of State decide? Would supply be on the NHS, privately, or both? Would it be made through pharmacies, dedicated centres, or both? Under what conditions and circumstances would it take place?”
Worry that assisted suicide panels would be a box-ticking exercise
Professor Ruck Keene highlighted that mental capacity assessments do not always get the right outcome, and have never previously been used for assisted suicide, as it is not legal.
“At the moment, no psychiatrist is carrying out this capacity assessment. They just could not, as a matter of law. We need to distinguish”.
He continued, “It is very important to understand this. The model enshrined in this Bill is about autonomy. When you are in that model, we look in a very procedural way to tick off a very procedural version of autonomy. Do you have capacity? Tick. Are you under obvious coercion or pressure? No. Tick. The sponsors of the Bill are very clear that we do not want to get into investigating with other people, or the reasons why, because this is about autonomy”.
“The National Institute for Health and Care Research is funding research into why people do not get capacity assessments right. The Mental Capacity Act came in in October 2007, and we still do not get it right the whole time. I am not questioning their professional judgment; I am just saying that we know it does not always happen correctly”, Ruck Keene stated.
Assisted suicide conflicts with suicide prevention strategies
Professor Ruck Keene also highlighted that we simply do not know when we should be trying to prevent an individual from ending their life by suicide, and when we should begin providing them with assistance in suicide.
“For psychiatrists, most of the time, their job is to secure life. Their job is suicide prevention”, he said.
“We need to know – and one of my real concerns is – how this Bill sits in the wider landscape of the law. I need to be able to tell, because I am going to be one of the people writing the books here and giving the training. I need to be able to say, with absolute crystal clarity, to a psychiatrist, ‘This is the point where you are not in the suicide prevention zone, and if you do not do all steps necessary to try to secure this person’s life, you could be prosecuted or you could be charged in various different ways or be civilly liable’. I need to be able to say, with crystal clarity, ‘You’re no longer in that zone; you’re now in the zone of the Terminally Ill Adults (End of Life) Bill’”.
Baroness Finlay also argued this point, stating, “Take a patient in front of you in palliative care who is expressing suicidal ideation. It seems to me that you now have two types. You have those where you go for suicide prevention, and there are those where you go for facilitating of assisted suicide, assisted death, and take them down that road, and they are in diametrically opposite directions”.
Normalising assisted suicide will have an adverse effect on the lives of children
The Children’s Commissioner for England, Dame Rachel de Souza, warned that the assisted suicide Bill would negatively impact the lives of children, who are already worried about the consequences this Bill may have for them.
She said, “I have one child who says, ‘I’m in care. I’ve got disabilities. The Government will pay for me to die under this Bill, but it won’t pay for me to live’. There are some deep concerns from children, and we need to hear them, listen to them and answer them”.
De Souza argued that people who don’t believe children would be affected by the Bill are “gravely mistaken”.
“Our QOL work, which I have shared, shows that children, especially our vulnerable children, are absolutely affected by what is going on. They live in 24/7 worlds. They will be watching us”, she said.
De Souza went on to discuss the fact that, in Canada, there are talks about expanding the law to allow children to end their lives by assisted suicide.
“When I was in Canada recently – and I know the system we are proposing here is nothing like the Canadian system – I asked the equivalent of GOSH, SickKids, to pull together its MAID team, the MAID consultants and its ethicists. They were talking to me about bringing mature children on next. I know we are not near there, but the interesting thing was that the ethicists’ concern was, ‘Under a rights perspective, if a child decides they want to have assisted dying without telling their parents, should we do it?’ I do not want us to be anywhere near that with children’s one precious childhood”.
“I know nobody here is proposing that, but the unintended consequence of a quickly pushed-through PMB is that we just do not have the time to consider those things, and I worry about it”, she continued.
Assisted suicide is “out of touch” with current NHS capacity
Baroness Berridge highlighted that the NHS simply does not have the capacity to introduce and manage an assisted suicide regime without existing services being negatively affected.
“I have placed in front of you a letter that was written to six MPs and published in the local newspaper from all the Plymouth senior palliative medicine doctors on 12 June of this year”, she said.
“I will quote from the third paragraph down: ‘It appears to us that the idea of doctor-assisted suicide being introduced and managed safely within the NHS is out of touch with the gravity of how the current mental health crisis and pressures on staff influence real-life decision-making. The Bill’s proposed process changes would significantly worsen the delivery of our current health services in Plymouth through the complexity of the conversations required when patients ask us about the option of assistance to die’”.
While Health Minister Stephen Kinnock said assisted suicide “does not send a signal of a very high degree of cost”, Baroness Berger revealed that a Treasury Minister was invited to give evidence to the assisted suicide select committee but refused.
She also stated, “We have heard from a number of witnesses over the course of the past three weeks about additional costs that have not been accounted for in the impact assessment and the modelling”.
Lessons and warnings from New Zealand
Professor Sinéad Donnelly said that palliative care patients often choose assisted suicide because they feel there are no other options.
“Then there was the illusion of choice”, she said. “Patients have told the palliative care team that the reason they are choosing assisted dying – and this was witnessed by the palliative care nurses and caused them quite a bit of distress – is that a family member said in front of them, ‘I can’t look after you any more’. The patient did not want to go to a rest home, a nursing home, so they applied for assisted dying, and that was the reason: that they did not have someone to look after them and they did not want to go to a rest home”.
Former New Zealand Health Minister, Simon O’Connor, said that once assisted suicide is legalised, the law will expand.
“Once you start down this road as New Zealand did – to be honest, there are many parallels between just about all euthanasia or assisted suicide Bills around the world; none of us exists in a particularly unique context, I might suggest – when it hits the real world, expansion will occur. That is exactly what is happening here in New Zealand”.
He continued, saying that euthanised individuals are now having their organs harvested. “There are very small changes, which I would argue as a former parliamentarian were driven by the bureaucracy and not in the law. A good example of that is organ donation. New Zealand now has created policies about taking organs from euthanised patients. Again, that was not specified in the law. The civil servants have decided to pick up that ball and run with it”.
“To emphasise, there are calls for expansion, which I said are inevitable. In fact, as you have heard from the other witnesses this morning, we are replete with calls to expand it, to change it or to remove safeguards and so forth”.
