Professor of Palliative Medicine Ilora Baroness Finlay of Llandaff from the United Kingdom visited New Zealand in late June and took part in various events, including media engagements and a panel discussion at Parliament concerning David Seymour’s End of Life Choice Bill. Baroness Finlay was accompanied by Robert Preston, the director of the Living and Dying Well Think Tank in the UK. Baroness Finlay is co-chair of that secular think tank. Both are opposed to legalised assisted dying, based strictly on the evidence.
NZ Catholic put some questions to both of them, asking initially how they would respond to common statements made in support of legalised assisted dying. These “person in the street” statements, and the responses of Baroness Finlay and Mr Preston follow.
NZC: A saying that might be uttered by a “person on the street” is “It’s my life and I should be able to end it if I want to”.
Robert Preston (RP): To which the answer is — you can end it if you want to. That’s not what is being proposed. What is being proposed is you should involve somebody else in assisting you to end your life. There is no law against taking your own life. There is a right to die. If you are seriously ill and you are dying, you have a right to say to your doctor ‘I don’t want any further treatment’. If that happens, you will not be abandoned.
Ilora Finlay (IF) : There is a duty of care, and if you say I don’t want treatment, then you must still be looked after, everything must be done to keep you comfortable, enhance your dignity, and you die of your disease. Quite interestingly, what sometimes happens when people decide they want to stop treatment, for whatever reason, is they actually feel better, because it was the treatment that made them feel really unwell. But that is their choice and that is right. As Robert said, the difference here is you are involving somebody else in being the vector of your death. So you are not the person who is actually in control at the end of the day, and in this bill, this isn’t as if you can get the lethal drugs off the shelf on demand. It is the doctor who is the gatekeeper on whether or not you get them. So it is an illusion.
RP: The law as it stands is in line with social attitudes, if you think about it. Society’s attitude to suicide is that people who attempt suicide should be treated with understanding and compassion, but suicide is not something to be encouraged or assisted. Now an assisted suicide law, like with Physician Assisted Suicide (PAS), basically says that if you are not terminally ill, we must do everything possible to stop you taking your life, if you are [terminally ill] we should be facilitating it, which is asking society to point in two directions. The same applies to Physician-Administered-Euthanasia (PAE) that there is a perception in society that it is wrong to take another person’s life, but here we are saying ah yes, but if you are seriously ill, perhaps it is right to.
IF: Perhaps the doctors will end your life, will kill you actually. This isn’t about a bit more pain relief, it isn’t about a bit of sedation to keep you comfortable — this is a massive overdose of drugs to kill you. That is what they are talking about.
NZC: A second thing a “person on the street” might bring up is “People shouldn’t have to endure unbearable suffering. We put animals out of their misery, why can’t we do the same for people?”
RP: Well, any vet will tell you that most people who bring their pets to be put down do so out of compassion, there are some who come to their vets and say I want my dog put down or my cat put down — why? It costs too much too feed, or for vet’s bills, or it’s a nuisance, or because I’m going on holiday. Now, I’m afraid there is this point — the trouble with the case for assisted dying is that the people who make it tend to be the people who would not do anything like this, they would behave perfectly properly. But there is a failure to realise that there are people in society who do this. Most families are loving and caring. Some aren’t. You have criminal laws, not because most of us behave decently, but because a small number don’t. I’m afraid that the vet analogy, if it points anywhere, it points the other way.
IF: The other thing is that nobody is saying that you should be left suffering, absolutely not. That is just straight negligence. No healthcare professional should leave you suffering. They should do everything they can to relieve your suffering. That is different from them killing you.
RP: The public’s perception of suffering here is people in agonising pain. If you look at the data from Oregon (which has legal physician-assisted-suicide), the reasons people give for having PAS have nothing to do with pain. Pain comes low down on the index. Right at the top is ‘I can’t enjoy life like I used to’; ‘I want to be in control of when I die’. This is existential suffering — and fear of the future.
IF: Also ‘I don’t want to be a burden’. Again, it is about what might happen in the future, not what is happening now. Or it may be because your family is pressuring to feel you are a burden, just like the dog they are going to get put down.
NZC: A third objection a person in the street might raise is “We are confident safeguards can be devised which will cover any anticipated difficulties with legalised assisted dying”.
RP: The safeguards that have been built into legislation in this area or that are proposed, for example in David Seymour’s bill, are not safeguards at all. They are a set of idealistic concepts — that you must not be pressured, that you must know what you are doing, that you must mental capacity, you must have a settled wish to die. There is no provision, there are no minimum requirements on a doctor to say — you must do this, this and this to make sure these criteria are met. It is very much left to individual judgement. Now, you can’t really call those safeguards. And a lot of the safeguards are actually very difficult to verify. The medical criteria are terminal illness, diagnosis, prognosis and so forth — tricky. But how is a doctor to know, on the social side, whether there is pressure taking place behind a request? Most doctors, certainly in Britain and I think probably in New Zealand, don’t spend their time doing lots of home visits. That’s where you pick up if there are some awkward family dynamics going on. Doctors often know very little of their patient’s lives beyond the consulting room. Worse still, in those jurisdictions where this has been legalised, most doctors won’t touch it. The doctors who end up doing the assessments are usually referral doctors who have never met the patient before and they know absolutely nothing about them beyond their case notes.
IF: The medical safeguards are not safeguards at all. You can’t predict who is going to live six months, you can toss a coin on it. You’ll be wrong, whatever you guess at. My biggest error, if you want to call it that, was in 1991, a man said he wanted euthanasia, I and three other senior doctors — four of us — thought that he would be dead within three months. He is still alive today and living well. And he just says — don’t go there. Diagnosis — well, we know that there are diagnostic errors, and the criteria in the Seymour bill are so woolly I don’t even know what they mean. RP: There are problems also with the doctor-patient relationship. When patients go to their doctors when they are seriously ill, they are not just looking for pills and scans and treatment, they are also looking for guidance. There is a power differential between doctors and patients, the doctor holds most of the cards, simply because he or she has most of the knowledge and experience. And patients will often raise with their doctor ‘give me something to end it all’, not because they mean it but because in most cases they are desperate and they want the doctor to say look, it is not as bad as that, let’s do something else to relieve it. But a doctor who says, under an assisted dying regime, ‘OK we will get the form out’, is sending the message, however unintended, ‘in my professional opinion the future is every bit as bad as you fear, death is the best course’. It is that unintended messaging, it is doctor-patient trust that is at the heart of this. Because patients trust their doctors, they will be guided by them. A doctor who favours this, who gets the form out, sends the wrong message.
NZC: A further statement from a “person on the street” could be “Objections to assisted dying are based on religion. This should not be a factor in decision-making in a secular state”.
IF: It isn’t, it is nothing to do with it. This is about the evidence of what is safe, what you can verify and what you can’t verify. Different people have got different views about the value of life and existential type questions like that. I think it is irrelevant.
RP: There is a religious case against it, but we don’t touch it. We are a purely secular organisation. But there is a religious case against it and it is slightly distressing, and I say this from a secular standpoint, it is slightly distressing to see religious beliefs marginalised. No-one would say ‘you would say that, wouldn’t you, you are a humanist’. It is very important that opinion shouldn’t be muzzled wherever it comes from. But as Ilora says quite rightly, the important thing here isn’t personal morality, it is public safety; it is evidence, and there is ample evidence that where the law has been changed there are serious problems.
NZC: Another position from a “person on the street” could be “Surveys say most people want assisted dying legalised. Shouldn’t Parliament follow the will of the people?”
IF: Well, if you did that, you would bring back capital punishment because there is a lot of evidence that when there has been a nasty murder, the calls for capital punishment go way up. I’m afraid that the way that you ask a question will skew the answer. The order in which you ask questions will skew the response you get. There actually have been some quite in-depth studies looking at the population, and the demand [for assisted dying] drops from this high level to much, much lower when they begin to understand something about it and realise what is involved, and then they begin to go ‘oh, I don’t like the sound of that’. The public think that either you are left to suffer, or you get lethal drugs. They think you get one little pill and then you slip away to sleep and it is all lovely. They don’t realise that you take a massive overdose of lethal drugs or that the doctor injects you with lethal drugs and actually, you asphyxiate. That’s the reality.
RP: Ilora and I quite often do debates in universities and so on and what very often happens is that they take a vote at the beginning — would you change the law? — and they take a vote at the end, and it always shifts substantially. The vote at the beginning is always massively in favour of changing the law, and against or very little in favour of changing the law at the end. The reason for this is we take time to explain to people what it means. If you look at these opinion polls, they use sugar-coated terms. David Seymour’s bill isn’t a euthanasia bill, it is an end of life choice bill. Oregon’s law is a death with dignity act. Only the Dutch — typically frank — have “The termination of life on request and assisted suicide act”. You have got to admire them really. The trouble is that people’s experience on most subjects is based on what they read in the press. And the press tend to go for the unusual because it is what sells papers. A good example is that safe landings of airliners is not reported, disasters are. I often say to people in debates ‘if all you knew about air travel was what you read in the papers you wouldn’t fly’. But we all know because we do it that it is safe. But there is a lot of unfamiliarity with death and dying today. People die in hospitals, they don’t die at home like they used to. So the actual process of death is quite foreign to people.
NZC: Some more general questions. Can you summarise what the decisive factor was in the overwhelming defeat of Rob Marris’s assisted dying bill in House of Commons (330-118) in the United Kingdom in 2015?
IF: In two words, public safety. The House of Commons looked at this and realised that you could not protect people from being caught up in it from inadvertently going for assisted suicide, euthanasia wasn’t even in that bill. And the evidence from Oregon was that there had been eight-fold increase in the numbers. If you translate that to New Zealand, you would be talking about 120 deaths a year. But the bill before you includes euthanasia as well, and because the numbers are so much higher — in Holland the numbers are one in 26 of all deaths, that would give you 1250 deaths a year in New Zealand. Those are big numbers of people being injected with lethal drugs without having criteria that you can say confidently that these are robust criteria. RP: To put those numbers in perspective, as New Zealand has a relatively small population at four and half million. In England and Wales, population 55 million, we would be looking at 2000 physician-assisted suicides, 21,000 euthanasias. There is also the point I think that the euthanasia lobby in Britain, getting back to why the Marris bill was defeated, are very resistant to tightening up their bills. We have told them again and again, this is an open invitation, so is that, the same bill has been presented for about the last 12 years, over and over again. They don’t go away and think have we got it wrong, maybe we need to tighten it, they go away and think we will wait for another period and then put the same bill forward. I think Parliament is getting wise to this. We are not going to go on considering the same bill again and again, and they just turfed the Marris bill out.
NZC: Turning to the David Seymour End of Life Choice Bill — what are its major flaws?
IF: I think the whole bill is deeply flawed, actually. It doesn’t have any proper safeguards, It’s all about process and ticking forms, it doesn’t really have anything to protect patients. I don’t think it has anything really to protect doctors either, because they are being asked in law to make statements about things about that they cannot confidently make statements about.
RP: It is a very wide open bill, astonishingly wide open. It applies not just to people who are terminally ill, with just a few months to live; it applies to people who are chronically ill, and who are not actually dying. But they have some declining capabilities. It has no serious competence clause either. It simply says as one of its requirements that you must know what assisted dying means and what the consequences will be. Nothing about whether you have mental capacity. And of course, it is not just physician-assisted-suicide. It is the much more lethal form of physician-administered euthanasia.
IF: It is a catch-all, it is death on demand, it doesn’t allow for the fact that people’s wish for death fluctuates, it doesn’t recognise that desire for death is linked with being given messages of hopelessness which may be inappropriate, or with depression. We know with the Oregon data that one in six of the people who passed all of their tests for physician-assisted-suicide had an undiagnosed, untreated depression. So basically, and we know that here [in NZ] you have a problem with suicide anyway, so basically what you are saying is — you want to kill yourself — OK fine. Do you want to close down your prevention policies? Because that bill is so wide open that I don’t see how you can say, actually we will work at preventing your suicide, but we won’t work at preventing somebody elses.
RP: There can scarcely be a street in New Zealand, where somebody wouldn’t fit in there. It is quite remarkable.
IF: There is another thing. Laws send social messages. And there is a message behind this bill that if you are not young, fit, beautiful, etc. that somehow you are less worth in society. And all of those cultures which venerate the older people, which have a sense of family duty to provide care and look after and work to enhance the worth of the individual, it actually tramples over their values. I think [the bill] is deeply utilitarian . . . You fundamentally change the nature of the doctor- patient relationship and the duty of care that a doctor has towards you if you say, right we are going over to a totally utilitarian model. Which is what that is. It is astonishingly broad.