Health and Social Care Committee
Oral evidence: Assisted dying/assisted suicide, HC 711
Tuesday 16 May 2023
Ordered by the House of Commons to be published on 16 May 2023.
Members present: Steve Brine (Chair); Lucy Allan; Paul Blomfield; Chris Green; Dr Caroline Johnson; Rachael Maskell; Taiwo Owatemi.
Questions 81 - 140
Witnesses
I: Professor Brian Owler, Consultant Neurosurgeon at the Children’s Hospital at Westmead, the Sydney Adventist Hospital, Norwest Private Hospital and Westmead Private Hospital, Australia; Professor Roderick MacLeod, former Senior Consultant and Senior Medical Specialist in Palliative Care, Australia/New Zealand; the Hon. Kyam Maher MLC, Minister for Aboriginal Affairs, Attorney-General, and Minister for Industrial Relations and Public Sector, Government of South Australia; and Dr Gary Cheung, Associate Professor and Old Age Psychiatrist, Department of Psychological Medicine, University of Auckland, New Zealand.
II: Professor Lydia Dugdale, Director, Centre for Clinical Medical Ethics, Columbia Vagelos College of Physicians and Surgeons, Columbia University, United States; and Dr Chandana Banerjee, Associate Professor of Hospice and Palliative Medicine, City of Hope National Medical Centre, United States.
Witnesses: Professor Brian Owler, Professor Roderick MacLeod, the Hon. Kyam Maher MLC and Dr Gary Cheung.
Q81 Chair: Good morning. This is the Health and Social Care Committee live from the House of Commons in London on Tuesday morning. This is the second of our oral evidence sessions for our inquiry into assisted dying/assisted suicide. We will hear today from witnesses in jurisdictions where AD/AS is legal for individuals with a terminal illness. Our first panel comprises witnesses from Australia and New Zealand; the second is from the United States.
Let’s turn to our first panel. Thank you very much for joining us. I know that it is into the evening there. We have Professor Brian Owler, a consultant neurosurgeon at the Children’s Hospital at Westmead, the Sydney Adventist Hospital, Norwest Private Hospital and Westmead Private Hospital; Professor Roderick MacLeod, former senior consultant and senior medical specialist in palliative care; the Hon. Kyam Maher MLC, Minister for Aboriginal Affairs, Attorney-General and Minister for Industrial Relations and Public Sector in the Government of South Australia; and, finally, Dr Gary Cheung, associate professor and old age psychiatrist in the department of psychological medicine at the University of Auckland in New Zealand. Thank you so much for joining us. Let’s hope that the technology allows us to hear you loud and clear; we can see you and have tested your lines.
To start off in rather general terms with you, Professor MacLeod, do you look at the law here in the UK and think that we are behind the curve? Does the debate that is being had here look familiar in relation to the debate that was had there? Do you think it is a matter of time before the UK changes its law?
Professor MacLeod: That is a difficult question to start off with.
Chair: Sorry.
Professor MacLeod: I have followed some of the discussions in the UK quite closely, and followed various social media posts. It looks to me as if you are taking a much more cautious approach to introducing legislation than was the case here in New Zealand. The very fact of having wide consultation with people from all over the world speaks very highly of the approach you are taking.
In New Zealand, as you probably know, the debate went on for years before the Government decided to have a referendum, which, in my view, was something of a mistake. We know from public opinion polls that a majority of the public think that assisted dying and euthanasia is a good idea, but when we dig deeper into that we find that quite a significant number of the public do not really understand what euthanasia and assisted dying means. For example, a majority thought that switching off life support and discontinuing medical treatment were euthanistic acts, so when people went to vote in the referendum, I think they were not entirely clear about what they were voting for. Certainly, the vast majority of people I have spoken to subsequently voted without reading the Bill. While there is the appearance that it went through broad public consultation, there were deficiencies in the way that consultation went about. I can only applaud you and your Committee for looking very broadly at what is going on in jurisdictions where assisted dying is allowed.
Q82 Chair: Thank you for that. Dr Cheung, what do you think of what you have just heard?
Dr Cheung: I did not follow the law-making in New Zealand. I am sitting in a neutral position. My background is actually suicide prevention in older people, and my research now extends to assisted dying. Yes, we had a referendum, which gave people the right to vote on it. There was a clear majority of 65%, so I think we have to respect people’s choices at the referendum.
I agree with Rod that some of the people who voted did not understand that they were actually voting for the Bill, which has now become an Act. I am sure that public education prior to a referendum could be done better but, for me, we should allow people to speak.
Q83 Chair: Minister Maher, can we bring you in? Do you think people understood what they were voting for in your jurisdiction?
Kyam Maher: Yes, without any shadow of a doubt. With respect, I disagree with Professor MacLeod’s assessment. I give people much more credit than I think he does. A distinction is made between passive assisted dying and active assisted dying. Passive assisted dying involves the refusal of treatment. In South Australian law, anyone can refuse consent to medical treatment. Active assisted dying is actively taking a substance—in the Australian model’s case—when you are at the end of your life with a terminal disease.
Right around Australia, in any survey that has asked, in excess of 80% of respondents supported someone being allowed to have the ability to make the choice to end their life. The way it has generally been framed in the Australian model that has gone down is that they should have that ability within the last six or 12 months, after being diagnosed with a terminal disease. There is absolutely no doubt that that is overwhelmingly supported by the Australian population.
The first state to introduce it was Victoria, back in 2017. It came about because there was a lot of political pressure, and opinion polls were being run by advocates in individual constituencies and seats. There is absolutely no doubt that there is overwhelming support for it—as I said, in excess of 80% of people consistently in opinion polls in Australia.
We took an approach very similar to Victoria’s and to the one that the UK is taking. We held parliamentary committees before introducing laws. That happened in Victoria. That happened in South Australia. Probably the most compelling evidence that we took in the committee in South Australia—it was also the case in Victoria—was from the coroners and the police. In South Australia, it was unprecedented that the police would weigh in by giving evidence to a committee looking at a social issue like that. The evidence that the South Australian police gave was in relation to the fact that in South Australia’s case, about 10% of suicides that the police have to attend and the coroner investigates are elderly people with a terminal illness taking matters into their own hands. That by itself was probably the most persuasive part of the evidence that we heard here in South Australia and Victoria. There has to be a better way for someone at the end of their life to die with the same dignity with which they have lived their life. I have no doubt that Australians fully understand the nature of the decisions that their Governments have made in bringing in voluntary assisted dying.
Q84 Chair: That is interesting. You were involved in formulating and passing the final Act, weren’t you? You have submitted written evidence to us, for which I am grateful. You are Minister for Aboriginal Affairs; can you tell us a bit about how you took on the unique cultures and different jurisdictions in your area when you were drafting the legislation?
Kyam Maher: That is a really good question. These issues are governed by state rules around Australia. The state of Victoria was the first, only six years ago, to introduce legislation and have it passed. Since then, every single state in Australia has passed similar versions of the Victoria law—a heavily protected, heavily safeguarded model that, as I said, requires someone to be in intolerable pain at the end of their life, with a terminal illness.
We have very different populations in South Australia, which is a very large landmass, including traditional Aboriginal communities who lead a lifestyle that is very similar to the lifestyles that have been lived for tens of thousands of years. Communicating with people with a wide variety of views presented challenges, but, as I said before, I have no doubt that this is something that is supported overwhelmingly and broadly by the South Australian population.
Q85 Chair: Great. Finally—to give you an early start, as it were—I turn to you, Professor Owler. Thanks for joining us. What are your early thoughts on what led to the legislation in your jurisdiction?
Professor Owler: Thank you for asking me to be a witness today. To give a little bit of background, there were about 50 attempts to pass legislation for voluntary assisted dying in Australia over many years, all of which failed, except for one brief period in the Northern Territory.
Victoria was the first state to introduce voluntary assisted dying. It came about through an upper House inquiry very similar to the inquiry that the Committee is conducting. They visited a number of jurisdictions where voluntary assisted dying was operating. They also heard very powerful testimony from the coroner, John Olle. In Victoria at that stage, about 50 people per year were taking their lives in quite horrific ways. Having been diagnosed with a terminal illness, they had taken matters into their own hands. That was very powerful testimony. If you have the opportunity, I suggest that you reach out to the authorities responsible in the UK as well.
As a consequence of that committee, they asked the Minister to form a committee, which I chaired. It was tasked with looking at the policy, coming up with the legislation and drafting instructions for the Bill that was finally introduced to Parliament. That was the model in Victoria. At the time, it was very similar to the sort of debate that has been happening in the UK. There was a lot of controversy. It was hotly debated in the Parliament, right through the night, and was a very big news story.
The Bill passed in 2017 and has been in operation for several years. Subsequent to that, every state in Australia has now passed the legislation. I have to say that by the end of that process the act of passing the legislation was not the controversial, high-profile media story that it was at the start. That is because Australians have come to accept voluntary assisted dying as quite an acceptable part of culture. There is no doubt that the two territories that now, thanks to federal legislation, have the ability to look at legislation, will pass very similar laws in the not too distant future.
It has come a long way in the last six years, since I chaired that committee and the legislation was first passed. Australians have a very clear understanding of what voluntary assisted dying is. When polling is done, questions are asked in a very clear manner about the ability to end someone’s life if they are suffering and have a terminal illness that is going to end their life within the next six to 12 months. As the Minister said, well over 80% of people support the legislation. It is not down to political divides; there is actually very broad consensus across the Australian community.
Chair: That is good. Thank you very much for kicking us off in that way. I have colleagues in the room. This is a cross-party Committee, so there are colleagues here from the governing Conservative party and the Opposition Labour party. Let’s bring in Paul Blomfield.
Q86 Paul Blomfield: I thank all the witnesses who are joining us this morning. To start with the voices that we heard from Australia, you both talked about the evidence on the existing settlement before new law changes were put in place—the reports that the police and the coroners made about terminally ill people taking their lives. That raises one of the issues that we are trying to explore: that a law change, on which much of the debate is focused, should not exclude proper consideration of what the existing legislative impact is. Professor Owler, how important do you think that was to the way the debate unfolded in Australia?
Professor Owler: I think it was very powerful in influencing the upper House committee that was looking at the option of legislation at that time. Like your Committee, it was a cross-party committee. I am told that some of the opinions of the people on that committee were changed by the evidence they received during that time. You make a very important point: the status quo, as it was back then and as it is in the UK, does not mean there isn’t harm happening now. That was part of what was brought to light by the coroner’s evidence and the police evidence. As I said, it had quite a powerful influence.
The other argument is that a lot happens between doctors and patients already that is not regulated and not well understood. There is a fine line between the relief of suffering and the potential to hasten a person’s death. Of course, this is something that has existed in many jurisdictions over a long period of time. If there is an added consequence that someone’s life might be shortened through relieving their suffering by the administration of some medication, that is acceptable as long as it is not the primary intention; but it is not regulated or well understood. There are a lot of other issues that come into considering what the impact of the legislation will be on current practices.
Q87 Paul Blomfield: You are a country in which several independent states have made the decision and have now had experience of a new legislative settlement around assisted dying. Is there any mood, based on that practical experience, to turn the clock back to the previous settlement? Or is it the view among the public and the medical profession that the legislation is working fairly well?
Professor Owler: In the jurisdictions in which the legislation has been functioning, there is a review process and the publication of reports on an annual basis. Victoria has now had that going for three years, so it has well-published data. The feedback is that it is working very well. Overwhelmingly, the feedback is positive.
If there is any frustration about the legislation, it is that the process a person has to go through to access the ability to access the medication is onerous. That can be difficult for some patients to go through. Of course, the law has many safeguards to protect people. It is a very serious issue, and it should not be easier. In some ways, it has purposely been made difficult because we want to make sure that all the checks and balances are in place.
To answer your question about whether there is a mood to go back, there is no mood to go back. Of course, there will always be opponents. We understand that. I respect their opinion that they do not agree with voluntary assisted dying but, for people who wish to access voluntary assisted dying, it is important that that access be maintained and that they have a choice about the timing and manner of their death when they are suffering from a terminal illness.
Legislation was passed relatively recently in New South Wales, the last state where it was passed. In each state, we have seen a progressive process. They have adopted very similar models. There have been no failures to pass the legislation since the Victoria model came in.
Q88 Paul Blomfield: Mr Maher, in your written evidence to us you said that there are 71 safeguards built into the assisted dying process in South Australia. Do you think the law around end-of-life choice is safer now for people in South Australia than it was before you changed the law?
Kyam Maher: Almost undoubtedly. As Professor Owler mentioned, what has become the Australian model, but was led by Victoria, is an exceptionally safeguarded model. The leader of the Government in Victoria at the time it passed reflected that it was probably the most safeguarded and conservative model in operation anywhere in the world. Victoria counted—if you count them all up—68 separate safeguards and hurdles before someone gets to the final stage of taking the substance to effect voluntary assisted dying. After amendments were passed to our legislation in South Australia, we counted 71 separate safeguards and hurdles that people had to clear. There is no doubt that it is exceptionally safeguarded.
We passed the legislation over two years ago, but we have been operating it for only three and a half months in South Australia. Western Australia has been operating it for significantly more time. Queensland’s came into effect this year. Victoria has over three years of experience. Every state has some sort of review or safeguard body that oversees the scheme. I don’t think any jurisdiction has found anything that has not been absolutely compliant, except one technical non-compliance in Victoria, where something on a form was filled out incorrectly.
As Professor Owler said, in all states in Australia a patient can ask for pain relief such that it relieves their pain but with the secondary effect of hastening death. That is completely unregulated. There are many more safeguards around what is coming to Australia. To answer a question that you asked before, I don’t think there is any possibility of turning back the clock now that every single state here has access to voluntary assisted dying.
Q89 Paul Blomfield: Professor MacLeod, I think it is right to say that you are an ambassador of #DefendNZ, which is linked to Voice for Life in New Zealand and campaigns against abortion and assisted dying. I was interested in the #DefendNZ campaign website, which I took a look at. It is now campaigning for changes in the law but not for the reversal of the law. I wondered why that was, if your views on the sanctity of life are so strong.
Professor MacLeod: To be honest, my views on the sanctity of life are not as all-encompassing as DefendNZ’s. My stance against assisted dying was based on my experience of over 30 years as a palliative medicine specialist.
Some colleagues and I have written to the Ministry to ask for more data to be collected, because we do not know exactly what is going on with the process in New Zealand. There are certain checks and balances that have to be considered and there is a review committee, but as far as I can find out the review committee is something of a tick-box exercise. We have asked that we have more information about the nature of the requests for assisted dying and about the process that is gone through.
Part of the difficulty we have here is that if we look at other jurisdictions—Australia is a good example—their intention is to collect a lot of data so that they can make comparisons between states and between their legislation and that of other jurisdictions. In New Zealand, the information we are collecting at the moment is pretty slim. There are certain things that concern me about the information that is collected and to which we have had access. For example, of all the people who have sought assisted death, only six were referred for a psychiatric opinion. If you look at any of the literature, you will know that between 15% and 40% of people with a terminal illness also have a depressive illness. One area in particular that concerns me is that judgments are sometimes being made by doctors who do not have deep knowledge of the patient they are signing off.
That is just one example of the breadth of information that we would like to have collected. For example, we do not know whether people are lonely, have been recently bereaved or are in financial difficulty. It may seem that those are peripheral issues, but they are peripheral issues that can have a big impact on the way somebody feels as they approach the end of life. Does that answer your question?
Q90 Paul Blomfield: It does. So you are not seeking to have the law reversed.
Professor MacLeod: Personally, I would like the law reversed, but at the moment there is not much appetite for that. The public have spoken quite clearly. We need to have more information about how the law is working and what safeguards can be added before we have a broader debate about what is actually going on.
Paul Blomfield: Thanks very much. I think I am running out of time.
Chair: Yes, we have to switch over.
Paul Blomfield: I am sorry that I do not have the opportunity to ask Dr Cheung the same question.
Chair: We are going to switch over at 11 am UK time. We have some people who are up in the middle of the night in the US, so it is probably only fair that we do that.
Q91 Chris Green: Mr Maher, how would you characterise the current debate in Australia around assisted suicide/assisted dying?
Kyam Maher: By the current debate, do you mean where the public debate is in Australia at the moment?
Chris Green: Yes. Where is it on the spectrum? Some people may want to reverse it; other people may want to keep the law as it stands at the moment, and perhaps get consistency within Australia. Others would say that now that you have made that first step, the scope needs to expand slightly in the future.
Kyam Maher: Because the Australian model is very new—in Victoria, which was the first state, it is only three years into operation, and in my state it is only three and a half months into operation—it is fair to say that there is no appetite for change either way. There is no appetite to reverse or stop what has been very widely accepted as a step forward. There is probably a more significant, but still only small, part of the population who want to be more permissive or to allow increased scope.
We have a model, which Victoria started, that is now, with some degrees of variation, the Australian model, where someone has a terminal illness, is usually in the last six or 12 months of their life and is in insufferable pain. All states have adopted that. Personally, I do not think we are going to see much change one way or another any time soon.
The argument often raised by those concerned about the introduction of the model is that it is a slippery slope or the thin end of a wedge, or that there will be creep in how it may operate, but there is absolutely no evidence of that in Australia.
Q92 Chris Green: I appreciate your view of the current position, but you have established this very significant change in the law—introducing assisted dying is a profound change for a state and a society—so what is your judgment of how the views and perhaps values of society will shift over time? Will there be pressure on the Government and within society to shift the laws in, say, five or 10 years’ time? Or do you not see the decision that people have made now as mutable?
Kyam Maher: I don’t think it will change very much in Australia. I don’t think the decisions we have made for voluntary assisted dying have put pressure to change laws in any other way. The fact that people will take medicine into their own hands, as the coroners in both Victoria and South Australia gave evidence about, the fact that you can voluntarily decide not to accept treatment and that will end your life, and the fact that people have been given medication that has the secondary or side effect of ending their life sooner than it might, does not mean that society has fundamentally changed, because those things were already happening. I think it has changed in that people now have an active choice and a way to do it that is not going to result in family members coming across someone who has committed suicide at the end of their life. They are able to do it in a dignified setting and in a dignified manner. Those have been the changes, rather than a fundamental societal change.
Q93 Chris Green: But we can see in jurisdictions that things change over time. I appreciate the practical consideration at the moment, but what is your ethical consideration when it applies to children in some countries around the world? For example, what is your ethical judgment over 16 and 17-year-olds having the same rights as people who are 18, 19 or 20?
Kyam Maher: Different countries have very different views about age and interpreting the science on how a brain develops in terms of decision making. It is universally the view of Australian legislatures that adult decision making starts at 18. For voluntary assisted dying you have to be 18 to have access to the scheme. I don’t think there is any possibility of seeing that change in Australia to allow the scope to someone below 18.
Q94 Chris Green: To be clear, do you personally think it would be wrong?
Kyam Maher: We considered this in Australia and considered that it ought to be an adult age of 18.
Q95 Chris Green: I am not asking about the considered opinion of society; I am asking for your personal ethical position. Are you ethically opposed to assisted suicide/assisted dying at the age of 16 or 17?
Kyam Maher: It is not something I support. I support adults having the choice. We accept that although people develop differently, as a general rule, given the science of development of the brain and the choices being made, that the age of 18 is an adult in Australia.
Q96 Chris Green: Professor MacLeod, I have a similar question. I think it was covered a short while ago in terms of society’s view, which is pretty settled at the moment. What is your judgment of how, when you make a profound change in society’s values or approach to values or the law, that is likely to lead to a further change, further down the line, once people have become accustomed to or are quite comfortable with a new law?
Professor MacLeod: If you look at jurisdictions around the world, the answer has to be yes. Changes will be made. The Canadian legislation was held up by the MP who proposed the Bill in New Zealand as a model for us to copy. You only have to look across to Canada now to see how things have changed there. They are broadening the criteria significantly. They have broadened them in Belgium and in the Netherlands. I think it is a real concern.
Personally, I do not think there would be much appetite in New Zealand for broadening the criteria. As I said earlier, what we have to do is shine more light on what is actually happening here with people who access the service so that we know exactly what the nature of the suffering is and all the other aspects that I spoke about earlier. I sincerely hope that our community does not seek to broaden the criteria at any time in the near future. We have to understand the way that the law is acting now before we sit down and reflect on it.
Q97 Chris Green: I have a final question. It is not everyone, but broadly speaking those in favour of a change in the law to support assisted dying generally say that how the law is changed now will pretty much be set in stone at this point and it is not going to change down the line. Those generally opposed to assisted suicide would say that on day one you get one set of laws, and then five or 10 years down the line you might well end up with something very different.
Professor MacLeod: I think that is very fair. Those were points that I debated before the referendum. When I pointed out to my opponents in debates that that broadening of criteria happened, I was broadly accused of scaremongering, but I think the evidence speaks for itself.
Q98 Rachael Maskell: Thank you for joining us today. Professor MacLeod, I would like to start with you. I am really interested to understand why so many people on the palliative care pathway request assisted dying. In New Zealand it is 78%, in Victoria it is 81%, and I believe it is as high as 85.3% in Western Australia.
Professor MacLeod: That is quite a complicated question, in a sense. For a long time I have spoken as a palliative care physician about the fact that people would ask me quite frequently if there was anything that I could do to end their life. When I was in practice, I would say that I could not because it was illegal. Requests for a hastened death are not uncommon in palliative care. People are essentially saying, “I don’t want to live like this,” and that is a very reasonable statement to make. What I know from my own practice, and the practice of my colleagues, is that after a variable length of time in a palliative care service those requests for hastened death melt away.
Part of the difficulty at the moment, from talking to colleagues in palliative care who have been approached by people they are caring for asking for assisted death, is that the process that has to be followed seems to militate against them being able to explore the existential concerns that often lead to the request for hastened death. Rather than focusing on the person, my colleagues tell me that they have to focus on the process. As the law is new, people are very fearful of stepping outside the law by being seen to attempt to change somebody’s mind. When you have worked with people near the end of life for as long as I have—I have looked after maybe 15,000 people who have died—it is not surprising that quite a number of them say, “I don’t want my life to be like this. I want to do something.” If you are prevented in any way from exploring why that is, it really shuts the door for them. That concerns me.
I have also heard from colleagues that because the law in New Zealand, quite rightly, expects you to maintain competence all the way through, some people who seek assisted dying request that their analgesic dose is not escalated, or is in fact reduced, so that they can be sure that they will be competent at the time of their death. That is only anecdotal. I do not have any serious research to back it up yet, but data is being collected by people who are working in palliative care services, so we will know in time exactly what impact the legislation is having on the practice of palliative care.
Q99 Rachael Maskell: Thank you very much. If that information and data is available, our Committee might want to have a look at it.
Dr Cheung, I would like to ask you a question about safeguarding, particularly on capacity in decision making and whether or not the system is robust enough to provide the very protections that many are concerned about, particularly the psychological assessments.
Dr Cheung: Some people say capacity assessment is one of the main safeguards for assisted dying. In New Zealand, the law requires the person to be assessed by two independent practitioners. The person has to remain competent right through the process, including at the time of medication administration, on the day of assisted dying.
In terms of robustness, all medical practitioners are competent to conduct those capacity assessments. One of the issues we have, which is part of the issues for registration, is that there is no compulsory training for the practitioner involved in assisted dying. There is some process that the Ministry of Health uses to ensure that some practitioners are trained, through reimbursement of their fees, but if you choose not to have reimbursement you do not need the compulsory training. That lack of training worries me a bit because it is a very complex area.
In the first year of implementation we interviewed 20 practitioners directly involved in assisted dying. We asked them directly about their way of assessing capacity. Most of them said that they felt quite comfortable and confident in assessing capacity. That may explain why only six referrals have been made to psychiatrists, which was unexpected. We were expecting more referrals to psychiatrists, certainly in the first year, but there were only six. What happened to the six referrals? Five were confirmed to have capacity and the sixth person died before the decision was made. There are some safeguards, but I think they can be improved with compulsory training.
Q100 Rachael Maskell: Kyam Maher, may I ask you about the data being collected on the process of death within the legislation? For instance, what is the length of time it is taking for somebody to die? What are the circumstances around that, and the safeguarding prior to that? What are the observations, and what data are you collating in order to scrutinise whether or not it is a safe process?
Kyam Maher: That is a really good question. In South Australia we have only been operating for three and a half months. Before bringing in our laws we spent a lot of time looking at the Victoria experience. As I said before, of the hundreds of people who have used voluntary assisted dying in Victoria, the review board found one instance where there was an error on the paperwork. Besides that, every single part of the law was being complied with, so the 68 safeguards in Victoria had been working effectively.
One of the really interesting things that is borne out in the data from Victoria and starting to emerge across Australia is the number of people who do not end up using the substance that they are prescribed. In Victoria, up until the middle of last year, there were 900 people who had gone through all the processes, with two different doctors who had had the compulsory training, and had gone through all the 68 hurdles and safeguards, and been accepted for voluntary assisted dying. Only 604—only two thirds—ended up using the substance and taking their own life. A lot of the evidence shows that, for many people, just the fact that they are accepted and knowing that it is an option has a palliative effect. They have some control over their own life, knowing that there is something they can use. That helps with their mental health, which in and of itself has a palliative effect, improving their end-of-life living standards.
The evidence emerging from the statistics in Australia is that only about two thirds who are accepted end up using the substance. For many in that other third it has a great effect knowing that they have the option of control over their life at the very end.
Q101 Rachael Maskell: Very briefly, Professor Owler, I want to ask about the assurances that you have that the criteria will not be extended, as we have seen in other jurisdictions.
Professor Owler: I don’t think there is any appetite to extend the eligibility criteria. It is fair to say that in society there is a range of views on voluntary assisted dying, including people who are against and those who would be in favour of extending the eligibility criteria. Any change would require a change to the legislation. All the operation of the law is in legislation to make it much more difficult for changes to be made in the future. There is an in-built review process at the five-year mark, to review the operation of the legislation. I think that is good practice. It is not to look at the fundamentals of the legislation but just to make sure that the law is acting appropriately.
These debates, when they are had, are difficult. The parliamentarians who go through the debate have, I am sure, absolutely no appetite for opening up the debate again and going through the same process, particularly in relation to that but also in terms of the Australian community. I do not see any debate or discussion in public: “We would like to extend the eligibility criteria.” It is not a debate that is had. The only debates are around people in remote areas and how they might access services better, and how we can get more doctors trained to provide access for voluntary assisted dying, particularly for patients who are geographically challenged. Those are the sorts of discussions that people are having, not about extending the eligibility criteria.
Q102 Lucy Allan: Thank you for joining us. We appreciate your time. Professor Owler, in the UK the British Medical Association has dropped its opposition to assisted dying and is now neutral on it. As the former president of the Australian Medical Association, what do you think is the ideal role that the medical profession should play in this debate?
Professor Owler: One of the things we did when we put together the legislation was to try to design it so that it was not seen as a fringe activity—so that it actually was part of good clinical practice. We have just had discussions about assessing people’s competence; that is all part of good professional practice.
We want to make sure that the ties between the patient and their doctors are still there. We have to recognise that people may have conscientious objection, and recognise and respect people’s views. Wherever possible, we want to keep therapeutic relationships intact, including in palliative care. I have challenged the description that once voluntary assisted dying is discussed palliative care goes out the window. That is certainly not the experience in Australia. Palliative care and voluntary assisted dying are not mutually exclusive. They work together. Many patients who are exploring voluntary assisted dying or going through the process are still accessing palliative care and will continue to do so.
In fact, where we have seen voluntary assisted dying introduced, it has provided funding and shone a spotlight on the activities of palliative care. In many jurisdictions, at state level the local AMAs have had a much more neutral approach. They have said that it is really a matter for society and Government. That is the policy of most AMAs in their approach to the issue. In most instances they have not taken a stance either way but have allowed the process to flow, and contributed in a very constructive way to the development of the policies around the legislation and the drafting instructions.
Q103 Lucy Allan: You mentioned earlier in your evidence to the Committee the coroners’ and first responders’ evidence to parliamentarians. Could you say a bit more about how valuable that was in the debate in your jurisdiction?
Professor Owler: It was a very powerful argument, not only to the committee, but when the evidence was seen by the Premier and the Minister for Health it had a powerful influence on them as well—certainly some of the stories that the coroners described, often of people taking their life with a firearm or by hanging, and the impact that that had not only for the individual who had to go through it but for their families who had to find them, and the first responders as well.
I had a colleague, who was married to a doctor, and who went through chemotherapy in New South Wales for leukaemia before the legislation was available in New South Wales. She took her own life. She was able to do so in a manner that was not as confronting as some of those other issues, but the sadness was that her husband, who had cared for her for about 10 years, went to work one day and had to come home and find her dead. That was really unfair on her and, of course, on her husband and her whole family. That is the sort of harm that we are trying to stop with this legislation. It really is about understanding people’s autonomy and respecting their decisions and their choice. When they are in a situation of suffering or dying, it is about the timing and the manner of their death.
Q104 Lucy Allan: Thank you very much. Professor MacLeod, one of the arguments that is strongly put forward by opponents of assisted dying is that the risk of coercion is a real threat. Is there any evidence of that in New Zealand, in your experience?
Professor MacLeod: New Zealand is very similar to other countries in that we are concerned about the level of, for example, elder abuse. It varies widely, between one in 10 and one in five, depending on the age and the area. It was not unusual, when I was practising, for families to tell me, “This is going on for far too long. Can’t we do something to end it?” There is no evidence that people are being coerced into—
Q105 Lucy Allan: Let me interrupt you there. Do you consider it to be coercion when people say, “This unbearable suffering is going on for too long”?
Professor MacLeod: If they are speaking to their relative and saying, “I wish you weren’t here any more,” then yes, I think it is. We do not have evidence of any coercion in New Zealand of people who have sought assisted dying, but I do not think there is very much that we can do to find that out. One of the questions the practitioners have to ask is, “Is this something that you have decided on your own?” The answer can be yes or no, and that is as far as it goes. Professor Cheung might be able to expand on that. I think there is a danger that people will be coerced into doing it, given the level of abuse of elders that is happening around the world.
Q106 Lucy Allan: Dr Cheung, could I ask you about the patient and doctor relationship and how it has been impacted by the introduction of this law?
Dr Cheung: It depends on which specialty the doctors work in. Personally, I do not have any patients directly involved in assisted dying. From the research we have done, the practitioners assessing assisted dying really feel privileged to help the person in the last part of their journey. That is quite surprising initially, but the more we hear about practitioners being involved and able to support people, the more we hear that it is a privilege for them.
I cannot comment on the relationship with GPs or the palliative care specialists, but we have heard from families that accessing information can be a barrier to seek assisted dying. Some patients mentioned assisted dying to their GP or other specialists, and those practitioners did not take that forward and help the person to seek the appropriate help. That is concerning, and it is happening.
Q107 Dr Johnson: I declare that I am a practising consultant paediatrician, so I have cared for children and babies who were dying. In my earlier career I cared for adults too. Thank you for your time today.
I have some questions about the practicality of this. I can understand why somebody who is in severe pain and distress and is near the end of their life would consider that the opportunity to take a medicine to make all the pain go away would be potentially attractive.
Back in February, when we went to Oregon as a Select Committee to hear how things were going there in practice, we were told that the medicines are not as straightforward as all that. They use a cocktail of different medicines in order to end someone’s life under strict guidance. They talked about side effects sometimes being that the medicines did not work or induced severe vomiting or even seizures.
What information do you have on the efficacy of the medicines and the palatability of the medicines that you are using? What do you use, and how much information do you gather on the experiences of people who have used them? Would you be able to tell us more about that, Dr Cheung?
Dr Cheung: From what I understand from my role in the Ministry of Health, most of the medication is very effective. I do not have figures for you about complications, but it is very seldom that we come across complications. Most people in New Zealand have the choice of oral or intravenous. Most people choose to have the intravenous preparation, and that is usually very effective.
Q108 Dr Johnson: That is interesting. I believe that in Oregon, if I recall rightly, it was an oral solution that they had to physically drink themselves, which might be a reason for that.
I want to ask you, Kyam Maher, about a figure that you gave about the number of people who get approved for these medicines but then do not take them; about a third or 300 patients in the last year were approved for the medicines and given the medicines, but did not take them. When we went to Oregon, they talked about how the medicines were given to the patient. No one really checked what happened to those toxic, lethal medications after they had been prescribed. They were in patients’ homes, but there was no obvious effort to retrieve them. How do you manage that?
Kyam Maher: In all Australian jurisdictions, how the medicines are administered is very heavily regulated. In nearly all jurisdictions a state-wide, Government-run pharmacy service administers the medicines and personally visits the patients to make sure, as one final check, that they understand what the medicine does and that they are medically competent to have that medicine.
There are strict regulations on how the medicine is stored, in a locked box. There is a person who is nominated in all Australian jurisdictions as responsible for the return of that medicine if it has not been used. It is for the responsible person to let the state review boards know when and how it has been used. It is exceptionally heavily regulated. There is a nominated individual who is responsible for the return of anything that is unused, for the one third who end up not using the medicine, and is also responsible for informing the review board once it has been used. The patient’s doctor has a responsibility for that as well.
Q109 Dr Johnson: That is really helpful; thank you. The other question is about demographics. In Oregon, when we visited we talked about the groups that were most likely to use the medication as a proportion of the number of people terminally ill. The number of people who used it was small, predominantly elderly, predominantly white and predominantly wealthy. Do you see any particular demographic patterns in the use of the medicines in Australia?
Kyam Maher: I am not aware of any demographic pattern. As I said, in Victoria—the jurisdiction with by far the longest experience—as of the middle of last year there were 900 permits issued and 604 people ultimately used the medicine. I am not sure of any demographic breakdowns as to how that might apply. My guess is that it would be reasonably reflective of the overall population. I am not sure that you would see a very strong skewing towards a particular demographic that was not represented in the same sorts of percentages as the overall Australian population. That would be my guess as to how that analysis should be done.
Q110 Dr Johnson: You said that 604 people used the medication. How does that compare with the number of people who have an expected death, who could have used the medication? Is it a high or low proportion of those people? Do you have an understanding of why those who do not use it do not use it?
Kyam Maher: The estimates from when Western Australia brought it in were that about 5% of reported deaths were as a result of voluntary assisted dying, but I want to check that. Maybe I can get back to the Committee with that information.
From my experience, certainly the will to cling to whatever life is left is such a strong one. Someone might be in pain that they cannot tolerate, but the desire to see what comes next and to cling to whatever sort of life is left is really strong. For the third of people who do not use it, the evidence tends to show that they are given some relief by the fact that they have the medicine even though they choose not to use it in the end. They are comforted by the fact that should their condition deteriorate even more, or they want to use it, it is there to use with dignity, and they do not have to take matters into their own hands. My guess is that some have an intention to use it, but pass away from whatever the underlying illness is before they have a chance to.
Q111 Dr Johnson: The other question I have is probably for Professor MacLeod. Earlier, you talked about the difference between active euthanasia, passive euthanasia and the withdrawal of care, and the relative understanding among the population of that. Could you expand on the difference between passive euthanasia and the withdrawal of active treatment?
Professor MacLeod: I do not recognise the terminology of passive euthanasia. I think it was discussed maybe 20 or 25 years ago in the palliative care literature quite strongly.
It is all to do with intention. If the intention is to end somebody’s life, that is a euthanistic act. The difference is in withdrawing life support, refusing medical treatment or allowing a natural death. In euthanasia and assisted dying, the intention of the doctor or the patient is to immediately end that life; that is all. I do not recognise the term “passive euthanasia”. I do not think it is helpful. It clouds the issue.
Q112 Dr Johnson: Professor Owler, you too are medically qualified. What experience have you had of the differences between actively ending someone’s life and perhaps turning off a life support machine in the full knowledge that that will end someone’s life? One is currently legal in the UK and one is not. How do you define the differences between the two?
Professor Owler: They are very different issues. Withdrawal of treatment has been recognised for a long period of time. That is very different from actively consuming medication or administering medication with the purpose of ending someone’s life. The two things are very different. I don’t think it has come up as a discussion point in any debate, or that the two have tried to be merged in any way. I think people have been able to recognise the difference between them fairly easily.
Q113 Dr Johnson: Kyam Maher, you talked at the beginning about regulation, saying that the way doctors manage end-of-life palliative care was not very regulated. In what way would you want to regulate it?
Kyam Maher: Professor MacLeod said, as did Professor Owler, that you can prescribe medication, even as a doctor, knowing that it will have the effect of hastening death or bringing about death sooner if the primary function is to relieve pain. Certainly, from the evidence we took in our Select Committee, that was something people talked about in relation to end-of-life treatment. Sometimes there is a difficult line, particularly with some patients. Some of the evidence from our medical experts today talked about pressure to do something to relieve the pain that would hasten death. Having a legal, dignified alternative to medication to relieve pain but that would have the secondary effect of hastening death provides another option. Certainly, in our inquiries there were some who gave evidence that it would make it an easy route for doctors at the end of life rather than having to weigh up those judgments.
Chair: Gentlemen, one colleague wants to ask a question before we close. Thanks for bearing with us. Our second panellists from the US are in the waiting room, so they can hear this. We will be with them very shortly.
Q114 Taiwo Owatemi: My questions are to Professor MacLeod and Professor Owler and are about the conscientious objection clause in both Australia and New Zealand. How are healthcare professionals supported if they choose to oppose assisted dying as a matter of conscience? Secondly, especially for those who see it as being at odds with their professional values, what support are they given if they have concerns? What is the process for them to raise it?
Professor MacLeod: I can only speak about hospices, where I have some knowledge. When people are conscientious objectors, they are very well supported by their colleagues. The hospices have set up fairly robust systems of support. In fact, medical directors of hospices tell me that they spend a lot of time coping with what is termed “moral injury”, where staff see something happening with which they feel uncomfortable.
There have not been very many assisted dying episodes in hospices. The vast majority have been carried out in people’s homes. Of course, hospice staff visit people’s homes. They do not abandon people. They continue to support them as best they can, but they sometimes find that it is very challenging when they experience what is widely termed a moral injury. The hospices are very well set up to try to support that.
Q115 Taiwo Owatemi: Professor Owler, what is the Australian perspective?
Professor Owler: There is no formal system for supporting people who conscientiously object with the provision of counselling. As Professor MacLeod said, there is peer support. It is very important to be clear that, when someone conscientiously objects, they do not have a responsibility to refer. There are two types of processes when it comes to conscientiously objecting and providing medical care. One is when you say, “No, I don’t want any part of that,” and that is to be respected. That is fine. The second option is that you say, “Okay, you can conscientiously object, but you have a duty to refer on to someone who you know has a reasonable chance of providing care.” The second is not the argument or the line that has been taken in Australian jurisdictions. It is just to support people who conscientiously object, and to say that that is certainly their right.
Taiwo Owatemi: Thank you.
Chair: Thank you very much. That concludes our first panel. We overran, but that is because my colleagues found what you had to say very engaging and informative. Thank you very much, Professor Owler, Professor MacLeod, Minister Maher and Dr Cheung for giving us the perspective in Australia and New Zealand.
We are going to bring in some other people and jump across the globe to the United States. You are very welcome to mute and listen to the second part of our session, gentlemen.
Witnesses: Professor Lydia Dugdale and Dr Chandana Banerjee.
Chair: I welcome our second panel. Dr Lydia Dugdale joins us from New York. She is director of the Centre for Clinical Medical Ethics, Columbia Vagelos College of Physicians and Surgeons, Columbia University. Dr Chandana Banerjee is associate professor of hospice and palliative medicine at the City of Hope National Medical Centre. She joins us from California where I believe it is 3 o’clock in the morning. It is only 6 o’clock in the morning in New York, so you had a lie-in, Lydia; Dr Banerjee not so much.
We are incredibly grateful. We have not been able to connect with Dr Mark Komrad from the University of Maryland. If he can connect, he will join the discussion, but right now we cannot bring him online. We thank you so much for joining us. I must say that you look very spritely for that time of day—more so than I would. Talking of looking spritely, we will bring in my colleague, Lucy Allan, who is going to start the questions.
Q116 Lucy Allan: Thank you, Chair, and thank you, Professor Dugdale and Dr Banerjee, for joining us. We appreciate it. Dr Banerjee, you are a specialist in hospice and palliative care; could you tell us a little bit about what it is actually like to provide this service to someone who asks for it?
Dr Banerjee: Absolutely. First of all, thank you. It is an honour being here talking to all of you. I have practised hospice and palliative care for over a decade. I have been involved in medical aid in dying, as it is known in the United States, or the End of Life Option Act in California, since it got approved in California in 2016.
In my field, especially working with the cancer population—extensive and really late-stage cancers as well—death and dying are part of the process of goals of care, with advance directives, discussing where treatments can be in their care plan and when treatments are not curative. With the advent of medical aid in dying, given that it is a voluntary, optional aspect for patients, I feel that it is something that gives patients a lot of peace of mind in the event that their symptoms or their disease is refractory to the regular modalities for end-of-life care here in the United States.
For example, I am sure you heard from the previous panel that we have continuous sedation, compassionate sedation and comfort care, as well as voluntary stopping of eating and drinking. A lot of these modalities require the patient, when they go that route, to be in the hospital. Many times, the medications are administered by physicians, and patients still linger. I have seen in my own practice that death lingers on for a while. It is painful for not only the patients themselves but the families as well.
With medical aid in dying, we use some of the same medications that we use in continuous sedation or comfort care, but we allow the patient to make the decision only when it is necessary for them to do it. Looking at my practice and at the trends in California over the last X number of years, we see that patients are very conscious of using this appropriately. There has not really been coercion or abuse seen. Many of the patients who choose to use it do so because their disease is so debilitating that it cannot be palliated with the regular modalities. Most of the patients do not use the prescriptions or medications, but the option of having them—in the event that their end of life in the last six months, when they are eligible for them, will be terrible—is a huge relief for them.
I feel that it is a very necessary modality. I consider it a medical practice. Unlike some of my colleagues here, or in the United States, I see it sitting in the medical practice of the other end-of-life options that are available. It is an optional practice, not a mandated practice. It is a highly regulated practice, which makes me comfortable in participating as a provider. I know that there are multiple checks and balances along the way to make sure that patients are using it appropriately, that they are eligible for it and that it is not available to people who are not eligible for it.
Q117 Lucy Allan: Do you feel that, by being able to offer your patients that choice, even if they do not opt for it, you are actually offering a better end to their life?
Dr Banerjee: Absolutely. I have seen in my own practice that it has allowed me to have conversations on a much deeper level with them, understanding their views on end of life and how their disease is progressing. The majority of my patients are cancer patients, and cancer is the No. 1 diagnosis for which medical aid in dying is used in the United States—70%, as the data shows. It is an option that allows them peace of mind. It is an option that allows them dignity, should they need it. It allows them and their family to plan for things rather than wait for the disease to get so debilitating that they cannot enjoy their life in the last six months.
Most of the time you feel that patients who are educated enough to have access to this option start the process at the five-month mark. The sad part is that, as much as we have evolved, most patients do not even get to the option when it is available to them towards the end of their life. Many of them do not even get to complete the process because of the multiple steps and the guard-rails around it. Having it there, for those who can afford to have it and those who are eligible for it, makes me feel that I have helped them die peacefully, if they choose to use that option.
Q118 Lucy Allan: Would you say a bit more about the impact on families? Presumably, there must be scenarios where it creates tension with a family if a patient opts for assisted dying but the family does not want it to happen. Have you seen that in your practice?
Dr Banerjee: Yes, I have seen it multiple times. I have even seen it when family members are physicians who come to me when their family is looking into the option. It definitely opens the conversation and communications around what the end of life looks like with the patient. I have found that in most cases that I have dealt with since 2016—if not all the cases—it allows for families and patients to come together and start understanding where the patient is coming from. Families only see the patient suffer, especially in my world. They see that the patient has gone through multiple treatments and many trials. Their symptoms have debilitated them. It is often just a matter of the family understanding what medical aid in dying is, and what it is not.
Most people commonly still have the belief that medical aid in dying in the US is for anybody and everybody. That is not the case. It is really highly regulated for those who have a prognosis of six months or less and have sufficient capacity. For me, as a provider, when I have patients and families come in where the patient wants to pursue this option, and the family is at odds, my job, and my obligation, is to describe and go through the process of what it is and is not. In all these cases, once the family member understands that it is a regulated practice, they come to terms with it. They actually respect the fact that the patients are looking for it.
Q119 Lucy Allan: Dr Dugdale, thank you for joining us. Could you tell us a little bit about whether the fears of people who opposed the change of law in California have had those fears realised? Or were they unfounded?
Professor Dugdale: Thank you for the invitation. To Dr Banerjee’s point, there have not been enough cases to be completely clear on whether some of the fears were founded. Specifically, people are concerned that there is no oversight once the drugs are dispensed. This is true. In states that track what happens to the drugs, we find that about 30% to 40% of the drugs are unaccounted for: the prescriptions are written and the drugs are dispensed, but no one is reporting on follow-up. That is particularly true in Vermont, where they have disclosed it in their annual reporting. It means that there are lethal drugs out there, and we are not sure who takes them or if anyone takes them. In contrast to some of our colleagues from New Zealand, there is no lock-and-key method for keeping the drugs. Once the drugs are dispensed, they can go anywhere and there is no one accounting for them.
Overall numbers are still quite low. In 2021, only 486 people died by physician-assisted suicide in California. My sense is that that is partly kept in check by the fact that euthanasia—direct injection—is not legal. An interesting fact is that California legalised physician-assisted suicide in 2016 and Canada legalised MAID, which also includes direct injection, in 2016, so we have the same timeframe. We have the same population of about 40 million, and there were only 486 in California in contrast to more than 10,000 in Canada who died by euthanasia in 2021. There is a way in which limiting it to the requirement to self-ingest and to obtain the pills and create an elixir on one’s own has a protective effect.
Having said that, we know that there have been multiple attempts to push physician-assisted suicide over into euthanasia in the US. There have been at least two Bills put before Oregon, one before California and I believe one before Hawaii—four attempts to my knowledge—to try to make euthanasia a reality. Why? It is partly because of the disability lobby and the recognition that if a person is unable to use his or her arms to self-ingest, it is a violation of disability rights and therefore euthanasia should be permitted. To date those Bills have failed in the United States.
As I am sure the Committee is aware, physician-assisted suicide is only legal in 10 states and decriminalised in one. We do not have abuses reported. We also do not have terrific oversight. In contrast to Dr Banerjee, I suggest that there are not copious checks and balances because there is zero oversight once the drugs are dispensed.
Q120 Lucy Allan: Do you think there is a conflict between being a good doctor and offering assisted suicide to a patient?
Professor Dugdale: That gets to the question of what medicine is for. Going back to antiquity in the west, medicine was for health. It was for the health and the restoration of good functions leading to human flourishing, if you borrow from Aristotle. That is the view that I have always held. It is consistent with the Hippocratic oath and the language of orienting towards good and not harm. I, along with many physicians in the US, have a very difficult time understanding how deliberately inducing death is the same as working towards the health and restoration of functions leading to human flourishing.
I completely understand the desire to relieve suffering. I am a GP, and the majority of my patients are elderly. I have walked with them for decades and walked with them to the end of life. In my view, deliberately making a patient dead, or hastening a patient’s death deliberately—I heard the last comments, and this is not the removal of life support to allow the underlying processes to take their natural course; this is hastening death deliberately—is not consistent with the classically held view of what the ends of medicine are. I therefore do not see it as consistent with being a good physician or with what medicine should be about.
One way to think about providing this service would be where it is removed from the house of medicine. In jurisdictions that are interested in legalising, that would be a much better way to go. You have a third party who is responsible for dispensing the lethal drugs, but it has nothing to do with the physician. In fact, I have always practised in areas where we have, in the US, many under-served patients—racial and ethnic minorities—who have historically suffered at the hands of physicians, often receiving inadequate or no healthcare and often being the victims of experimentation. Those patients are very concerned and are often much more hesitant to partake in something like physician-assisted suicide because, historically, their people groups have not been treated well by the medical establishment. Pushing such patients over to death, even if it is their autonomously stated wish, is concerning for many.
Q121 Lucy Allan: Do you not think that the right to choose to end your life in a dignified manner without unbearable suffering is something that people should have access to?
Professor Dugdale: That is interesting. In Washington State and Oregon, the vast majority of people who elect lethal drugs are not concerned about pain. You have to ask, “What do you mean by dignified?” If by dignified you mean suicide, suicide is legal in every US state. If by dignified, you mean a sanitised, medicalised suicide, no, I do not think that is consistent with the goals of medicine; nor do I think it is consistent with a physician’s practice.
Anyone may end their life. It gets very confusing because, as a society, we have taken a strong stand against conventional suicide, yet in Oregon and Washington—the two states that have legalised the longest in the United States—the number of patients who are screened for depression is less than 1%. In fact, in the last couple of years in Washington it was negligible. That means we have a practice where we have taken a societal stand against conventional suicide, yet if you go into the house of medicine, it can be permissible if certain criteria are met, but we are not asking people if they are depressed.
As a GP, I can tell you the literature shows that GPs miss about 50% of cases of major depression. These are patients I know well and that I have taken care of for years. If I am missing major depression, and you have a physician who has only recently met a patient because the patient is seeking a doctor who will prescribe lethal drugs, it is highly likely that we are missing cases of mental illness or mental disorder that could be treated, and thereby prevent deaths. It is worth nothing that in some states you do not have to have a long-standing relationship with a physician in order to obtain lethal drugs, and that raises additional concerns.
Q122 Rachael Maskell: Thank you for joining us. In the last session we heard that, while training was available for clinicians, they did not necessarily need in-depth expertise in either psychological assessment or palliative care in order to provide options to patients. Dr Dugdale, could you set out the experience in the US?
Professor Dugdale: Are you asking about the experience of training in palliative care or the experience of actually providing the lethal drugs?
Rachael Maskell: Around counselling in the process of assessment for assisted suicide/assisted dying.
Professor Dugdale: A group of our psychiatrists at Columbia University in New York looked at the assessments that have been proposed in various states, if they choose to screen. In the United States, Hawaii is the only state that requires psychological screening. That psychological screening, looking for mental illness that can be reversed prior to providing lethal drugs, can be performed by almost anyone. In fact, Hawaii is currently considering a Bill that would expand that. It can already be a psychologist, a psychiatrist or even a social worker. Now, Hawaii is attempting to expand it much further so that almost anyone who is clinical could perform the psychiatric assessment and evaluation. Why? We have a grave shortage of mental health clinicians in the United States. It is seen as preventing or prohibiting the rapid enactment of physician-assisted suicide if patients do not have access to someone who can perform their psychological testing.
It makes sense that there would want to be an expansion. Having said that, we know that, apart from Hawaii, almost no one is doing psychiatric testing. When our psychiatrists at Columbia, who I should say on the whole are in favour of legalisation, evaluate from a professional standpoint the psychiatric tools that are being used, they find them woefully insufficient to get a good sense of whether patients are suffering from mental illnesses that could be reversible—namely, depression and anxiety that would lead to hastening death. Does that answer your question?
Q123 Rachael Maskell: It is incredibly helpful. Dr Banerjee, after listening to that response, how would you see the situation?
Dr Banerjee: I have a couple of points in answer to Dr Dugdale’s point. This is a new practice. Like medicine that has gone on for multiple years and centuries, it is an evolving science, as with other things in medicine that are also evolving.
There are a couple of things to state. First, as a practising physician in medical aid in dying, and not physician-assisted suicide, as you choose to call it, I believe that it is a much safer practice. From what I have seen in what we have practised and the censuses of what other physicians have practised, it is a much safer law and much more regulated than guns are in the United States. There you go for taking life.
The other thing is that something like continuous sedation, which is also terminal sedation, is not with the intent of palliating a symptom. It is with the intent, ultimately, of ending life. The difference between medical aid in dying and all the other things that Dr Dugdale is discussing is that all the other options put it in the physician’s hand to end or alleviate a patient’s life as they near death. I want to be very clear that medical aid in dying is for people who are already dying, in six months or less. I can assure you of this much. In my patient population, not one of them has not been depressed knowing that they will die in the next six months and leave their loved ones. Depression is always going to be there as a baseline for someone who is terminally ill and will die in the next few months, if not sooner.
At the City of Hope we are very conscientious. It is not that we see our patients just for this; we have walked with our patients for years on their cancer journey. We have social workers and psychiatrists who are involved in working with our patients. Our supportive medicine department is comprehensive and works with patients who choose to look into medical aid in dying. We need to distinctly understand that medical aid in dying in fact de-medicalises the practice, as Dr Dugdale was saying. It takes it out of the physician’s hands and puts it in the patient’s hands. That is important. The autonomy of the patient is important. Even medicine in general is moving to looking at patient autonomy when it comes to certain things in medicine, in collaboration with the physician. That is what medical aid in dying allows you to do.
I cannot speak for places where there is no oversight. I can speak to how it is done at my institution and the other institutions of which I am aware in California. It is highly regulated. We walk through multi-step processes with patients, families and medical providers. I, personally, have said no to prescribing medications to patients who I found were not eligible. That is what a good physician does. If it is not meant to be for someone, or someone does not qualify for it, you do not push them or influence them towards it. You educate them on what it is and what it is not.
I have seen endless suffering at hospices and in my patient population. For me, the most important thing for someone who is already dying, where their disease is something like neuroblastoma, and seizures are inevitable, is that the last two weeks of life that they have are peaceful and they can pass away peacefully. I see that as being a good physician.
Q124 Rachael Maskell: Could I pick up on that final point? Two weeks is very different from six months. How does that work out with the practice of the legislation?
Dr Banerjee: Those of us who actually practise have seen many patients in this situation or in terminal disease, and see that, especially in the last six months of life, some patients really rapidly decline. Some cancers, especially in my world, are rapidly declining cancers in the last six months, and some are not.
I have had patients who have gone through the process but during the process, which takes multiple days—even though the waiting period has been reduced to two days in California, it takes a longer time for patients to go through the entire process—they have lost decisional capacity, at which point we halt the process. Prescriptions are usually only dispensed when a patient requests them. We hold the prescriptions at pharmacies and the patients can request them. It is not that we are going through the process, sending the prescriptions, having the patient dispense the prescriptions and then patients are left just to no one. For every patient that we write prescriptions for, we follow up, even after a while. We follow up during their death. We follow up with bereavement, and we follow up to see what has gone wrong and what has gone well.
Patients in the last two weeks are the saddest cases. I know that there are some patients who could have used the prescription if they had applied for the process sooner, but that is not always what happens. This is life. You cannot plan everything, much as you want to plan it. It is the same thing with medical aid in dying. It is not something that you just pick up one day and say, “Oh, I want to partake in medical aid in dying.” It doesn’t work that way. You still have to go through a very regulated process with those who practise it.
Rachael Maskell: Thank you very much.
Q125 Chris Green: Dr Banerjee, which state in the United States, or which jurisdiction around the world, would you say has the best approach to assisted dying?
Dr Banerjee: This is me at this point in my life in my practice and having dealt with a lot of families that have gone through a lot. I feel like the guardrails that the United States has are the best. I do not think I am a believer yet, or will ever be, of euthanasia or the Switzerland way of doing things where it is available to everyone. Canada changed it so that everyone is allowed to partake in it.
I am of the firm belief that this is something that should have guardrails. It is a very conscientious choice on the patient’s part, if they are eligible for it. What makes me comfortable as a physician who can practise with morals and a clear conscience is that the guardrails are there to protect patients as well. It should not be something that is the same as suicide or euthanasia, just free for everybody. That is not what medical aid in dying is. The people who take that approach in the United States and call it suicide confuse the picture for normal people. They confuse people or other physicians who are trying to learn about it. They confuse it for the law out there. Clearly explaining it, as it is, is the most honest approach that we can have as human beings, so that people can have the option if they choose to take it or not. It should be an option.
Q126 Chris Green: In any state or any country that brings in an option of assisted suicide or assisted dying, depending on your preference for language, it will only be done after huge national debate and the legislators really considering what they are doing, why they are doing it and perhaps using evidence from around the world.
As was highlighted before, California has had attempts to change the legislation there. We can see in Canada, the Netherlands and Belgium that the legislation changed after the initial law was brought in. Is that suggestive of a thin end of a wedge, with people getting the principle established and then opening up more broadly? Or does it perhaps suggest that society, culture and values shift over time so that, even though at the beginning people would not want that, five or 10 years down the line they would? What is your take on that?
Dr Banerjee: I was actually involved in talking to the council in the House and Senate when it came to revising the End of Life Option Act in California, which first came into effect in 2015 and then was looked at again and revised in 2021-22. What has changed with the legislation is not that it allows for the use of this particular law but, rather, that it just reduces the waiting period from 15 days to two days. That is one change that took place. That was specifically for the kinds of patients who have such rapid decline. We do not want patients not to have decisional capacity when they—
Q127 Chris Green: Can I question that? We understand and appreciate that people can have ups and downs. People have mental health concerns and the question of a slightly longer period of time may allow someone to rebalance and become more positive in their mental health, so reducing that time can perhaps create problems. This is one of those concerns whereby you can bring in the initial legislation and people think, “Okay, this allows people a release that they need,” but there are also some safeguards in place. This is a reduction of a safeguard.
Dr Banerjee: I do not think it is a reduction of a safeguard because the eligibility of six months itself is a very stringent safeguard. You are not eligible for this unless you have been prognostically given a lifespan of just six months or less. If you see patients who have used this, and you see the disease progression, you understand that the two days allows patients to get the prescription sooner if they need to, in the case of diseases that are really rapidly declining in the last couple of months.
Like I said, with that six-month safeguard we do not get patients coming to us at the six-month mark saying, “I want to participate in medical aid in dying.” I have patients who start the conversation with me or social workers or providers at least a year ahead of time. They have heard about this. They are just not eligible for it. They know that they have diseases that are going to be rapidly declining or debilitating or with refractory symptoms, because they have done their research. They are educated enough to do that research. I feel that is where the reduction in the waiting period would help. No one uses it just to end their life, and no one wants to die. They choose to end peacefully. That is what we look at with this law.
The other thing that the law has done in California is to help people to understand medical aid in dying a little bit better. It is required that institutions post their policies. Physicians are required to transition care to other providers if they themselves are not willing to participate in medical aid in dying. It also allows for patients to have conversations about the full scope of end-of-life care in the last six months of their life. I think it has done a lot of great things.
Q128 Chris Green: Dr Dugdale, I take it that if I were to ask you the question about which state or which jurisdiction in the world you think has the best policy on assisted suicide, you might say none of them.
Professor Dugdale: On the last question, it is worth stating clearly that in every jurisdiction where either euthanasia or assisted suicide has been legalised, it has expanded. To answer your question, it has never been just contained. If I were to answer that question as someone who is not in favour and does not think it coheres with the goals of medicine, I would say that Switzerland and the United States are the best. Not going the route of direct injection has a protective effect in terms of the number of people.
It is worth stating that Canada reported 1,721 euthanasias delivered for loneliness in 2021—more than 1,700 were euthanised for loneliness. Once you can directly inject, it runs amok. It never stays contained. To your original question to Dr Banerjee, yes, it will expand. That is what we are seeing worldwide.
Q129 Chris Green: This is a distinct point. The United States of America has a very different healthcare system from the United Kingdom. Whether in inclusion or discrimination, are there any concerns about how assisted suicide might be practised at the moment? Might there be concerns over time about how it might develop in the United States?
Professor Dugdale: As I mentioned, there have already been multiple attempts to expand euthanasia, and I think that is a concern. In terms of who is receiving it, on the whole most of the jurisdictions where it is practised are largely white. California is the most diverse state. You have to ask, “Are we discriminating or is it a problem of access if more black and brown people are not partaking? Are they wise to reject being made dead, because of historical reasons and ethical reasons?” That is something that remains to be parsed.
What is interesting is that in the United States the language is always that we are going to legalise for this very narrow set of reasons with these safeguards, as Dr Banerjee said, of 15 days’ waiting period, and so on. It is interesting that you do not release the drugs until patients are ready to take them. That is not true anywhere else. That is an institutional requirement.
As soon as it is legalised it expands. The language shifts; it goes from “guardrails” to “lack of access”. That is very pernicious. Guardrails are there to protect society more broadly and to keep us from becoming a death-inducing state. It is interesting that in some regions of Belgium as high as one in seven deaths is by euthanasia. What kind of society do we want to live in where we solve the problems of ageing, lack of access and poverty by euthanasia? That is what we are seeing happen in Canada, and they have not had it legalised for that long. People cannot pay their rent; they get euthanised. People cannot afford their medicines; they get euthanised. People need a wheelchair lift and the veterans affairs office offers them euthanasia. Those kinds of stories are replete in Canada. To the extent that we can keep guardrails—namely, not progressing to euthanasia—we are in a safer place. I think Dr Banerjee and I agree with that. Having said that, no one keeps it contained.
Q130 Chris Green: Perhaps not in the United States, but you are suggesting that in Canada poverty is a push for people to go down this route.
Professor Dugdale: Yes. There are so many stories coming out of Canada right now. It has made me become more vocal on the subject. Many colleagues in Canada say that it used to be that if a patient said, “Doc, I just don’t want to go on any more,” you would then sit down with the patient and say, “What do you mean you don’t want to go on any more? Do you want to be discharged? You don’t want more cancer treatment? What do you mean by that? Are you depressed? Do we need to get a psychiatrist in here? What is going on?” Now, there is almost a reflex: “Let’s just call the MAID team.”
Q131 Chris Green: Professor MacLeod in the last panel made the point that the law, in a sense, prevents concern for the individual as opposed to just getting them to follow the procedure that they have asked to go down.
Professor Dugdale: I have one more point. I understand wanting to have people die peacefully. I understand that impetus. I understand the compassion and the sensitivity that is behind it. But the longer-term progression of this is not the kind of world I want to live in. I do not want my children to say, “Mom, it’s time for you to move on because I have a career and we can’t take care of you in your old age. Why don’t you just go ahead and end things?” That is happening, especially in Canada. It has happened so quickly since legalisation.
I also think that because the United States healthcare system is rather unwieldly, as is the case with Canada, if we were to legalise euthanasia we would very quickly go the route of Canada, in my opinion, in contrast to the smaller and more closely regulated social systems that we see in western Europe.
Chair: We have 10 minutes and two colleagues. We are doing the maths, as they say.
Q132 Paul Blomfield: Dr Dugdale, you were making some fairly extraordinary suggestions about the way in which assisted dying might be offered to people because they were living in poverty or because their children felt that their useful life was over. I do not want to debate that now, but there are lots of wild allegations that circle around this debate. Could you provide written evidence to the Committee of those sorts of incidents? We have read fairly widely on the issue and have no evidence of it in our experience.
Perhaps I could ask you a different question. We have already heard in our inquiry, even from the strongest opponents of changing the law to allow assisted dying, that even the best palliative care cannot provide a peaceful and comfortable ending for everybody. There are some for whom death will always involve great suffering. Do you agree with that?
Professor Dugdale: I agree with that, with a caveat. There is almost no pain that our current regimen of palliative care medicines cannot treat. Are there extreme cases where pain is absolutely refractory? Yes. In those very rare cases—I underscore that they are very rare—deep sedation is a possibility. You can sedate to unconsciousness. Does that hasten death? There are then questions of whether you provide artificial nutrition and hydration while the patient is in a state of deep sedation.
In my mind—colleagues from New Zealand alluded to this—the principle of double effect has been in practice in medicine since the middle ages. It aims at the good of relieving suffering and it does so in a way that is proportionate to relief. It always has to be proportionate. If the pain is so extreme that patients cannot get relief and be conscious, it is not unethical to sedate to the point of unconsciousness. If that hastens death, it is considered historically ethically acceptable because the intention and the aim are both good, and the escalation in pain medicines is proportionate to the need of the patient. Again, I want to underscore how very rare that is because our medications have advanced so well. It is true that, on occasion, it happens.
Q133 Paul Blomfield: Thank you for that answer. I think there is probably a debate about how rare it is. What are the consent mechanisms around sedating people through the end of their life? There is lots of consent in relation to assisted dying, but how does it apply when physicians are making a decision to sedate people in the way you have described?
Professor Dugdale: Informed consent is a bit of a loaded subject in the world of medical ethics, and I am an ethicist. There is a question of whether anyone is ever truly informed. Can a non-physician—a non-medical practitioner—really understand the ins and outs of everything that is being done? We have to do our best to inform patients and answer their questions. In the United States, when a patient himself or herself is not able to speak or engage, by law there is an appointed family member or a friend in an order stated in state law, or a patient can choose to identify a healthcare proxy who is a legally appointed individual to make the decisions. Informed consent is never perfect. It is always a matter of debate.
In all aspects of medicine where we require a patient’s permission to do something—and this would certainly be one of them—we do our best to help patients and their families or appointed loved ones to understand the ins and outs, or the risks and benefits as we say, of a given intervention. Palliative sedation would certainly be one of those.
Q134 Paul Blomfield: Can I ask you one final question before I move on to Dr Banerjee? You talked about taking doctors out of the process in one of your earlier answers. Obviously, there is complete respect that people such as you would have ethical objections to assisted dying and should be given the opportunity conscientiously to stand aside, but to actually take the entire profession out of the process would be quite extraordinary, wouldn’t it?
Professor Dugdale: My idea on this would be similar to medical marijuana. When medical marijuana was first legalised, I was practising in Connecticut at the time. My boss decided that he did not want to participate in the dispensing of medical marijuana. We had enough work. If a patient requested medical marijuana, the patient could come to us and say, “I have a condition that qualifies. Will you write a letter that gives my name and that condition?” I could say, as Mr Smith’s doctor, that Mr Smith had condition X and sign my name. That was the extent of my involvement. Mr Smith then could or could not take that letter to a marijuana dispensary and receive it there.
I have often thought that that would be a much better approach. In a sense it preserves the distinction between helping my patients towards health and not killing my patients. I have often thought that a dispensary approach would be better. I am no expert on Switzerland, but I understand that it is not physicians who dispense the lethal drugs when someone pays €10,000 to go to Dignitas: it is a nurse or even an assistant who gives the drugs. If, as democracies, we want to move to having the right to die, which is an interesting question politically, I do not think it should be the physician who engages.
It does not mitigate some of the other social ills. We see a concomitant rise in conventional suicide in jurisdictions where physician-assisted suicide is legal. Washington and Oregon have graphs of it going up completely in parallel and analogous to the rise in physician-assisted suicide. We see a rise in conventional suicide. The normalising of making oneself dead is problematic in society. I think it is very problematic. Having an assisted-suicide dispensary does not mitigate that, but it would at least keep the lines clear about what medicine is for and what medicine is not for. That would be particularly helpful for some patients who have suffered at the hands of medicine.
Q135 Paul Blomfield: Dr Banerjee, you were looking fairly puzzled at some of Dr Dugdale’s remarks. Would you like to share your thoughts?
Dr Banerjee: I feel it is ethically wrong having suicide dispensaries, as you are claiming them to be, just pop up. It is very different from marijuana clinics, which are legal in California. You are talking about really potent, lethal drugs that are specifically written for easing someone’s end of life in the last six months. I do not equate that with marijuana, and I certainly do not feel that physicians should be removed from it. Physicians can be removed in the sense of giving the patient autonomy, but they should be involved. Not every lay person understands medicine. Going through medical aid in dying, having medical professionals involved, allows patients to truly understand everything that is there about end of life and the various options and choices available to them. They can be part of a conversation.
If I was to send my patient off to a dispensary that dispensed end-of-life drugs, first of all I have no idea who would hold the DEA licence for that, and I would be afraid that they would abuse them. There is a reason why there are guardrails. I absolutely agree with Dr Dugdale in one way: this should not move to euthanasia. It should not move towards that in certain ways that Canada and other countries do it. It should stay within the realm of having guardrails so that the practice is not abused and is ethical.
Q136 Paul Blomfield: Earlier in your answers you talked about assisted dying giving people peace of mind. The earlier evidence we heard this morning from Australia was that many who had requested the opportunity to have drugs that they might use actually never used them at the end of the day because the suffering was not so acute that it led them to take up that option. Has that been your experience too?
Dr Banerjee: I have always had patients who used this in the last six months of life. Most of my patients have used it in the last month when they are rapidly declining, and their seizures are taking over. It is not pain, as Dr Dugdale says, but there are always other refractory symptoms that cannot be cured by current medicine, as much as it has advanced. They know from their own research and from what they have seen of the disease that very soon they will start losing the ability to do anything and become vegetative.
Most people in their right mind, if they were to choose to die peacefully versus die a vegetative death that cannot be controlled, where they are dependent on somebody for every aspect of their day in the last two weeks of their life, would choose to relieve the burden on themselves and others, and have peace of mind that they are dying well. Most of the patients I talk to or treat tell me, “Dr Banerjee, it is a matter of two weeks or a month. I’m not getting cured. I’m not going back to living a healthy lifestyle, let alone even being able to walk out of my wheelchair, because of the way this disease is going. I would like to have the option, when things get really detrimental and the symptoms just cannot be controlled, so let me have the opportunity to die peacefully.”
The other thing that is important to understand is that most of the people who request medical aid in dying are already receiving hospice care. We know that sometimes, even though hospice care is the best of care—I am also a hospice physician—it is just not enough to refract all the symptoms and the torture that patients go through due to their disease.
Q137 Paul Blomfield: I have one final question. We are obviously debating a potential change in the law in the UK. You have practical experience of seeing how that law might operate. In jurisdictions in the US that have gone down the route of offering assisted dying to people with a terminal diagnosis, do you see any concerns that have emerged leading to a desire, either from the general public or in the medical profession, to turn the clock back? Or are people broadly accepting of where they have got to?
Dr Banerjee: You will see, at least in the medicine world, that data suggests that now there is about 55% support from physicians versus 46% 10 years ago. There is a very small but gradual increase in physicians supporting it.
The concerns come about because of, first, not understanding the process well, and secondly, seeing how rapidly the movement can easily change from just medical aid in dying to something like assisted suicide or euthanasia, as it is in other countries. When countries like Canada expand the law, those become concerns, but I am speaking for the United States where I think, in the jurisdictions where it is legal, that it has a process to follow. Those processes have been put together with massive guardrails. That is why it is not the same as what happens in Canada or Switzerland.
Some of my concerns are not with how the law comes about or expands. My concerns are more with the opposition to the law. There is misinformation about what medical aid in dying is and the way it is explained and put out there for the common public. In general, medicine is hard for them to follow. That is what creates the confusion around it. I have had patients with a prognosis of five years who said, “Well, I thought this was available to us.” I, as a physician, have had to educate them and say, “No, this is not what medical aid in dying is. Medical aid in dying is very specific, and this is what it involves and who it is for. There are other options that, if you are really in pain and suffering, you can use while you go through your treatments and procedures.”
The concerns I have are more about the objections to medical aid in dying because of the misinformation that is spread around it. It belittles the practice. I feel like my obligation as a physician and as a human being is to say that, if the UK was to look at implementing some form of it, they should do it the way the United States has done it, with the appropriate guardrails in place. As I said, you don’t just wake up one day and say, “I want to take part in medical aid in dying.” That is not what it is for. Let’s not make it suicide or euthanasia. Let’s keep it what it is. Let’s keep it true to what it is supposed to be.
Chair: Thank you. This is a really interesting panel and there is lots of thinking going on, which is exactly what we wanted there to be. We will try to finish at a quarter past the hour. Finally, I will bring in Dr Caroline Johnson.
Q138 Dr Johnson: Thank you to both witnesses. I appreciate that it is very late or early, depending on how you look at things.
Dr Banerjee: I have my coffee.
Dr Johnson: Excellent. Hopefully the next couple of minutes will be okay.
I want to ask you how good doctors are at predicting when people will die. We hear stories in the papers all the time about people who have confounded medical expectation and live for a decade or more after they were given a very short-term diagnosis. Indeed, when we were in the States recently, we met a woman who has lived more than 20 years since she was considered, in her state in America, for assisted dying. In the end she declined to have it. What data do you have that would indicate that when someone is told they have less than six months to live, without the institution of medically assisted dying or euthanasia, that is roughly right?
Professor Dugdale: Physicians are not wonderful prognosticators. There is one case in Oregon where a patient lived more than 1,000 days after receiving the lethal prescription—more than three years. At the same time, in Dr Banerjee’s case, when patients are full of cancer and refractory it is usually much clearer.
One other point worth bringing up is that in the United States one can stop one’s treatment for chronic diseases and qualify as having six months or less to live. For example, if a patient has diabetes and is dependent on insulin for his diabetes, stopping insulin will lead to certain death within weeks, if not sooner. That would qualify. It depends on what the parameters are as to prognostication but, in general, doctors are not great prognosticators, especially in cases where death is not obviously imminent, as in the case of advanced cancer.
Q139 Dr Johnson: Dr Banerjee, earlier in this discussion you used the word “afforded”. How much does it cost?
Dr Banerjee: It depends. It used to be much cheaper when Seconal, or secobarbital, was available; it was maybe $15 or $20. What has happened is that drugs have been put out of the market and it has become expensive. It can cost, depending on where you are getting these medications—which pharmacy or formulary you are using—anywhere from $400 to sometimes $1,000 or $2,000, so it is expensive.
What practising physicians have tried to do is work to find the right kind of cocktail that will allow for it not to be an access issue if the patient is truly eligible for it. Dr Dugdale made the point that access to healthcare is something that is notoriously looked at in many countries, not just the United States. I feel privileged to practise in the United States, where at least you have morphine available to those who need it. If you look at my home country, India, where I was born, access to morphine is almost negligible.
One of the things that medical aid in dying has also done is that the debate about access to healthcare and health equities has been brought to the forefront. Usually what happens is that access to any kind of care mirrors the national picture of what is happening. Just like in the US, there are issues with barriers and obstacles to healthcare for minorities, the under-represented and coloured people, and the same holds true of medical aid in dying. Access is an issue. They cannot afford even to pay their rent, let alone find access to healthcare. The drugs are an issue. In a system like yours in the United Kingdom, that is something you may want to consider. How do you approach the aspect of access? What are some of the guardrails you want to have there? Part of national healthcare is the responsibility of the Government; they are publicly responsible. Here, patients are responsible for buying their own medications because the insurance companies do not cover them.
Q140 Dr Johnson: Thank you; that is really helpful. The other question I want to ask is about the side effects. When we were in Oregon, they talked about how there were significant side effects to the drugs. The image created of medically assisted dying is that one sips a cocktail, falls into a gentle sleep and drifts off into the next world. What we were told when we went is that it is not quite as simple as that. It might be the case with injected euthanasia, as we heard from the Australians earlier on, but when you are taking a drug cocktail that you have to drink yourself, you may find yourself with intractable vomiting, seizures or other side effects of the drugs themselves, which may be worse than the symptoms you were experiencing before you took them. Is that your experience in practice? Does that happen?
Dr Banerjee: As a frontline person, I would say I follow up with 90% of my patients who partake in this. Usually, I or a social worker will follow up with 100% of the families as to how the experience was and how the process went. What we have found is that it is not just injection of the cocktail. The injection aspect in the law says it is anything from the mouth to the rectal system, so you are not putting it via IV. When you cannot swallow the medication, which is true for a lot of people who have various types of cancers, and absorption issues even if it is not cancer, you might choose to take rectal administration through a plunger and catheter. It works the same way, or it can go through the G tube or the G-J tube.
I find very rarely that something goes awry. The most disturbing one for me, as a physician, was a rectal administration: the time of death was a little prolonged compared with oral ingestion of the cocktail. I have had some patients who have not taken the whole medication immediately. You are supposed to have it within a certain timeframe so that it is really ingested. Some patients take a little longer, or they have not followed the protocol of what we have told them: “Don’t have fatty foods the night before. Make sure that you refrain from certain things that will impact the absorption.” There, we have seen the time of death prolonged.
I have very rarely seen things like seizures in my patient population. When you guide patients appropriately to take the medications in the way they are supposed to, they work the way they are supposed to work. I have heard of cases where patients have had seizures. That is probably because of inappropriate ingestion of the medication. That is what physicians have said. They have not followed the process and sometimes they have had seizures. It is a scary thing. I don’t think there are patients sitting there with their cocktails. If they were healthy individuals, they would not be in the position of wanting to take that cocktail. Obviously, their symptoms are so bad, at least in my population, that that is their relief in the last few days of life that they have.
Chair: That was really fascinating. Thank you very much for joining us. I guess you can get a lot done today, Dr Banerjee, seeing as you have already done an hour and it is 4 am.
Thank you very much to Dr Banerjee in California and Dr Dugdale in New York. We really appreciate your joining us and giving a really thoughtful hour or so of evidence. That concludes today’s session.