Thursday, March 30, 2017

Liz Carr: Address to Victorian Parliament on assisted suicide

This article was published by HOPE Australia on March 26, 2017.

British actress, comedian, broadcaster and disability activist, Liz Carr is in Melbourne with her show: Assisted Suicide: The Musical. This is an edited transcript of her address to Victorian Parliamentarians who will likely debate assisted suicide later this year.

Liz Carr - Disability activist, British actress and comedian
I don't come at this from a religious point of view. I'm not coming here to tell you what to do.

I'm telling you what I believe and how it worked in the UK, because in the UK, in 2015, the Rob Marris Assisted Dying Bill that was defeated in the House of Commons.

I'm stunned we defeated it. I'll be quite honest, because much like in Australia as a whole, because I know different states this is coming up as an issue, this comes up in the U.K. all the time as a subject.

It finally got to parliament. The first time in 16 years that there was a parliamentary vote on it, and it was a private member's bill and on a Friday afternoon. You know what Friday afternoons are like. We have 650 people in the House of Commons, MPs. 448 turned up, pretty unprecedented to be honest. That's how important. This is life and death. It really is. That's not just hyperbole.

The vote went 330 against legalising assisted suicide, to 118 who were for it. Almost three times! We didn't expect it to be that strong; the defeat of the bill. Ultimately what swung I think, and what was the concern is that nobody, nobody, wants another human being or themselves to have a bad death.

Whatever we think on this subject and wherever we meet on the subject, I'm assuming we all want a good death for everyone. We'd be ridiculous if we didn't want that. I want that too. I just don't believe that we should legalise and get states and medical involvement in that, or a more formalised medical involvement in that. That's the only difference, and I think what swung it, and where a lot of MPs were is that yes, in some respects we want this.

The autonomy aspect is massively compelling, but the risks and the sufficient strength and robustness of safeguards is so difficult. It's difficult to prove and they're difficult to establish. Are the benefits to the few outweighed by the risks to the many? They were viewed not to be. That's where we're at.

People are still trying to change the law. Just today there's the Noel Conway case in the U.K., where they're trying to introduce it by the back door via the courts. This will keep raging. It's important. It should.

I also got the Churchill Travelling Fellowship and worked then with BBC World Service and made a radio documentary, and I visited all the countries where assisted suicide was then legal. The only place I haven't been to is Canada. I've been there and I know what's going on now, but I made a documentary on that. A little bit like your Andrew Denton, where we're two of the few people who visited, and interestingly he thinks its fine. I don't think its fine, and we presumably saw some of the same things. There you go. Of course that's going to happen, but I come at it as a disabled person, and that's relevant here.

Let me tell you in a minute why many disabled people are opposed, and why we figure in this debate quite strongly, because I think it's important to know that not all opposition is religious.

Opposition to these bills is usually marginalised as being religious and that's very useful to do if you don't want to listen to it, but actually if we want to introduce a bill like this, we have to listen to all sides of course, and we have to not diminish their view.

Liz Carr being interviewed on Australian TV.
It's usually religion, but actually disability rights activists have quite a strong voice, and certainly have in the U.K. I'm also gonna talk about assisted suicide, not assisted dying. That's partly because I think we should call it what it is.

Now assisted dying, many people will come back at me and go, but this is just for people who are at the end of their life. Therefore it's about they're dying anyway, but what we've seen in other countries is that's not necessarily true. The trajectory is not about that they're actually dying. That that could be many, many months or years off, but also they are choosing to take their own life. It's still that act, so it should have the safeguards that you get when you do call it suicide, which are prevention strategies as well.

And what we do know is that when you change the language, and you start calling it assisted dying, and you don't use words like euthanasia and assisted suicide, then you increase public support. Assisted dying is far more popular than assisted suicide. It's equally a political choice, what we call it.

Why am I opposed? Well, I'm not opposed to suicide. I don't want people to feel that they have to end their life. I don't want them to be in that position. I believe in suicide prevention, but ultimately that's an act for an individual. Where it gets tricky for me is the issue of state involvement, and the issue of changing the criminal law, changing the law, and the issue of medical involvement, on a formal level.

At the moment the law acts as a deterrent. It does in the UK. And that's really useful that it's a deterrent.

What happens when we introduce a bill and looking at what the bill might look like? I know we don't know what it looks like yet, because it's not been created, but looking at the recommendation 49 and seeing what that might be. What it does is it allows, it indemnifies doctors, and it takes it a way away from being a crime and that can be a good thing, but it means that there's very little investigation.

It means that it then happens behind closed doors. It's very hard then to prove anything, because if a doctor, and this happens in Oregon, if a doctor has supported a person through this, and ticked the boxes, they also then facilitate the prescription process and they also evaluate that process to the Oregon Health Board. Therefore the person doing it, and assessing is also the person accountable for it.

Of course we're not gonna see if anything goes wrong. Of course we're not, and I'm not saying that there's Machiavellian doctors trying to kill people. I'm not. I'm just saying that it is very compelling that if somebody wants to die and they approach a doctor that maybe sometimes they'll do what they have to do. That happens now anyway.

We can all argue about that to what degree, and I know that's one of the arguments for legislation is well this happens anyway, why not? That actually happens less than we imagine that, and it's still very different than actively taking that role.

I have met with disabled people all over the world in this issue. Why does it involve us? Because it's very easy to shut up disabled people, and go this is not about you. This is about terminally ill people. In the public perception, in the media, and in medical terms there is such a fine line between disability and terminal illness, that we become one in the same.

There was a documentary on this week on ABC. There are regular documentaries on your TV channels and in the UK that show people asking for assisted suicide laws, and the right to die, and most of those people are not terminally ill, and that is often very confusing. We see people that look like us. We see people that can't do certain things, can't wipe their own bum or can't get dressed, or are worried about those things. Well they're often things around disability.

They're often around loss of autonomy; loss of dignity. There are things that I guess is why disabled people feel that they can contribute to that, because we have lots of experience in that. We've probably lived a life of that. It is in a way, in many ways, about us, and it will be, because we've heard stories from many disabled people about how complete strangers can tell you that they couldn't imagine what it would be like to be you, and surely you'd be better off dead.

I know that if I went to the doctor and said that I was having trouble, regardless of the fact of what I do for a living even, I think it would be easy to convince them that my life was not worth living. Far more than my non-disabled partner, and that's a big thing for me.

If there was a non-disabled person at a railway bridge about to jump, what do we do? Do we go up to them, and go: in the name of autonomy and self-determination, you do this. If this is your choice you do it. I don't think we do that usually. We usually stop them. We usually prevent them from doing it. We usually put in suicide prevention. We question why they're doing it. We question their mental health. We would see it as a tragedy if it occurred.

Now if that person was impaired, was disabled on that railway bridge, would we act the same? Now you might say yes we would, but my bet is a lot of people would not act the same. They would go: if that person wants to end their life I understand why, because if I was like that I'd feel the same, and of course, because it must be difficult. Then we start to call it about choice. Then it's different, and for me if you even see those two people as different and those two situations as different that suggests we do have an unconscious bias and discrimination.

Legislation is therefore unsafe already, because not everybody already starts out as having equal value under the law or in the medical profession or in public perception. I guess, and I remember Stella Young talking about this a lot, can we have death with dignity, until we have dignity in life?

That's one thought that was really crossed my mind when I've looked at the end of life review from Victoria, is that there are 49 recommendations. It feels to me you can't get to 49 until you've done 48. All 48. Then think about 49, but not before. Why put all the resources, and this effort and all this time, into 49. Recommendation 49, until you've done the others. Then I think I'd feel happier.

Maybe lots of us would feel happier, because people are not having good deaths now. People do not have choice in how they live, and the support that they might need in life. Ill and disabled and older people are not getting what they need now resource wise, health wise, pain wise, pain management, palliative care, housing, NDIS - that's in a mess.

Until those things are sorted, can we really trust that the reasons that people give for wanting to end their lives are the real reasons, or that really it is about pain and suffering, or is it because we're not doing what we should be doing to support those people in life. It's too easy to go: do you know what, if I couldn't do that A, B, and C, maybe I'd want to end my life. I can't imagine. I'm rubbish with pain. I wouldn't want that. It's too easy to therefore assume that that's why those people might want to die. Maybe they just need decent pain control and support, and we need to make sure first, all of that's dealt with. Absolutely.

There's 48 recommendations. Plough into them. Come back in 10 years.

Then let's look at it. When I said about the person on the bridge, I guess there's that sense for me that it does feel like a discrimination. Look; I almost feel that if you're gonna legislate, legislate for everyone, or legislate for no one. I'm a bit all or nothing, but actually why choose one group of people? Why is one type of suffering worse than another? What if you lose a child? I mean that must be the worst pain. It's the worst pain I can imagine is losing someone. Losing a child must be dreadful. Now that's suffering, but we don't support them to end their life. We give them what they need; but when somebody becomes ill or disabled we far more understand and then support them to end their lives.

Why are we choosing these groups of people? I understand why. Its okay, you don't need to tell me. The response on that is rhetorical; but we are selecting a group. Why? I just put that out to you. Why that group of people? I understand it too. In the UK, and I know Stella had a very similar experience, most people will tell you, a similar experience in the medical profession and it's why for me I don't want to give that group of people even more power and control over my life. That's it. I think when you rely on the state for your life and your existence, you probably don't want to give them more power over your death as well.

I'm not sure they can be trusted. I'm sorry. Not that I think somebody's gonna maliciously kill me, but I think if I was in the right frame of mind, and I cost loads to exist... Let's not take this out of the economic vacuum. Rationing and decisions around cost are being made already. Around who we treat, around whether somebody's too old. Do we bother with an operation? Somebody's too fat. You've gotta lose weight. Already we're thinking about resource allocations in terms of medical treatments.

Baroness Jane Campbell
What about when assisted suicide becomes a medical treatment? How does that fit into that? Baroness Jane Campbell - she's in the House of Lords. She's a disabled woman on a ventilator. A very successful disabled woman. She's tiny like me. She looks frail like I do. I know I wear the trappings of being ill as a child and as a disabled person. She ended up with a chest infection. We lose loads of our people over winter. It's horrible, as a disabled community, we lose loads of disabled people, and Jane was very ill with a chest infection, and she ended up in A and E, and her husband was there, and noted that on her note, she has a do not resuscitate order. She had of course not decided upon that. She did not want that, and her husband had to go and basically make sure there was 24 hour support for her. There was always somebody there who knew who she was, but then put photos around the bed of her getting her degree, of her joining the House of Lords, of their marriage.

Don't just see this figure, and make assumptions over this life. People are far more than they appear, but those doctors had assumed a level of value of that life, and that's happening already, and that of course is what drives many of us to be very fearful of being in that position. Now, we can say well there are safeguards, and I think safeguards are interesting in terms of a piece of legislation. They are fascinating because the fact that we know we need safeguards means we acknowledge there's risk. This is not a process that's without risk, and that risk comes in terms of can we be sure that person voluntarily wants this? That they're of sound mind, that they're consenting, and that they're not being coerced?

Now some of the difficulties here are that we're asking again, doctors to do that. That very same doctor that made the diagnosis and prognosis have to do all this other stuff as well - and how do they know? I'm not giving you answers about how to work that out, but these are the questions with these types of laws: How do we know someone's not being coerced?

Coercion is not about being dragged to your death. Coercion is worse than that usually. It's usually social coercion, and it looks in the form of you decide yourself, because life's so poor, but that's not always physical or mental. It can often be because you've not got the support you need or because you're with a family that you don't want to burden; and even if they say you're not a burden, the fact that you've got the kids to look after or you've got work and you've got life, you can feel that. How do we unpack all of that?

I went to all the countries, as I said, where assisted suicide and euthanasia are legal. Some of the highlights for me: I met fascinating people. I loved who I met, on both sides of this debate. It's tough. The people who were driven to pass these laws have seen some horrific things. They've seen people that they love, dying. We've probably, many of us have seen that I think. Legislation won't change that by the way. Legislation doesn't get rid of bad deaths, and assisted suicide isn't also necessarily a good death. They can be ugly. They're not always, but they can be. They can take hours.

I met someone whose husband has taken 21 hours to die. They were still happy with that actually, but it's not quick necessarily. In the Oregon model it's lauded. Where people get prescriptions. Its 100 capsules and they can make you sick and sometimes they don't work. This idea of it being a beautiful death or an easy or a quicker death; well it can be in some ways but it's not always the most pleasant, and that of course is it: death is always gonna be messy, whether we have assisted suicide laws or not.

In the Netherlands, we know, the Netherlands are ubiquitous for going too far with everything, aren't they, and everything's legal out there! The latest, when we were out there, we were given a pack of tablets. Me and my partner went to a conference of assisted suicide supporters and they gave us the last will pill. It was a little pack of mints, because their campaign is around completed life or being tired of life. That's now people who are over 70, who have basically gone: I've done all I want to do in life. That's it. They're not terminally ill. They've just had enough. That's where they're going.

People talk to me about the slippery slope. Firstly I don't go with that phrase. I don't agree with that phrase, because it suggests panic and fear and things that are out of control. It's much more controlled than that; the extension of these laws. It's much cleverer than that. It's done in the name of equality. If you introduce a law in this state for those with only terminal illness, tell you what will happen next is people with other conditions will want to be included in that definition. They will. That's already happening. The law hasn't even been enacted to its full extent in Canada yet, but already people with dementia or impending dementia are calling for that extension. Some disabled people are calling for it. You've excluded us.

Again, whether you want it, just be fair. It's like calling it assisted suicide. Be very clear what you're getting, and be very clear where it's going to go because it will. People laud Oregon. Oregon currently have an amendment before their courts to extend their law to people with dementia. It happens everywhere. This is not just about Europe where it's out of control. No. This is about in the states too. By a natural extension, an incremental creep, it will extend as I say. It's discriminatory for it not to. People will take you to court, if they can't use a law that you've brought in. They want it if it's a right. It's either a right for no one or a right for everyone. That's where it goes.

We probably know about Belgium. Belgium where just for being old, where children... There was the first death of a minor recently from euthanasia. Last November, there was somebody with alcoholism based on that extension that I've just mentioned.

Let's talk a tiny bit more about Oregon before I start to bring it together. I know that it's talked about here, particularly in the older community maybe that people are ending their life before they have to. People are killing themselves. Is that gonna change if you legalise assisted suicide? Not necessarily, because what's happened in the states where it's legal in the U.S., remember its only six states out of 50 where it's legal. (It's already been not voted for this year in four states.) We hear about the ones where it is, but there's many that have opposed it as well, and the majority have opposed it.

Again, it's not like it's happening everywhere in the U.S. But the states where it has, and particularly Oregon, there has been a massive increase in suicide since it was legalised. That could be around the state that it is; it's very particular, very peculiar state anyway. It's also not about pain. It's very rarely about pain, and I think that's useful to know.

In the tick box forms that you fill in in Oregon, the reasons that people give, the dominant reasons are about loss of autonomy, loss of dignity, loss of the ability to do day to day activities. Pain is the second to last reason. It's in the 30% as opposed to the 80% and 90% where the other figures sit. This is really about loss of autonomy and dignity. The safeguards: two doctors that have to analyse whether someone gives consent, whether that's voluntary. That's there's no duress. That there's no mental health issues. That they have prognosis, the diagnosis. It's a serious incurable condition.

There are questions over that, whether that's with or without treatment. You might have kidney failure and if you stop having dialysis that would make it an incurable condition. If you stop taking drugs for chronic heart failure, that would qualify. There's quite a fine line with lots of these and you're not gonna know that until you get the final bill to look at.

I guess one of the things is we don't need to make a choice necessarily between suffering and suicide. There is a lot that we can still do in terms of palliative care and hospice care and support for people, and often when people tell me about bad deaths and I've gone to the people I respect in those worlds and said well what can we do? Can we alleviate all pain? For most people yeah, but there will always be some people that we can't.

But do we change a law for those people, and remove protection for the others, and is it as straightforward as that? Is it about the benefits to the few? Is it about the risks of the many?

Laws should be about protecting the majority and safeguards are difficult: the acknowledgement that we need safeguards is an acknowledgement of risk in the first place. This is risky. I've always felt, always felt, I feel that's a compelling argument.

I know lots of people would disagree, but I feel that even the risk of getting it wrong in one case is too much. What strikes me as bizarre is that in terms of something like capital punishment we don't have that for that same reason and that's a much higher degree of accountability. We have an investigation, a court case, police involvement, and still there are miscarriages of justice. We want to check is that person of sound mind, not being coerced, whatever all of the safeguards we're gonna put in, and we have that happening with two doctors with limited time.

It's also okay to oppose assisted suicide, and I say that as someone that struggles to remember that when she's getting hated for it. Now I acknowledge to the other side that if you support assisted suicide, then you may be called, the murderers. None of us are in a happy place. This is rubbish and a difficult situation, because ultimately we all want the same thing. We want good deaths for everybody. It's just how we make that happen and how we think that should happen, but opposing is also okay. To have concerns is okay.

Many disabled people oppose. Many certainly in the states and what I hear from around the country too, many indigenous communities. In the states black and African American communities often oppose more than other communities as well. People who were dispossessed. People that have had a negative experience of the state involvement in their lives often are more reticent about these laws.

The people who usually want these laws usually look more like the lawmakers and the doctors implementing them, funnily enough. Obviously you have, and I know it's complicated within Victoria, but currently nationally, the AMA opposes assisted suicide, and in the U.K. we have the same situation. We have the BMA, the British Medical Association. Most of the medical colleges, oppose as well, and they're the people who would be implementing. That's happening in Canada, that doctors aren't sure about their involvement.

No doctor's going to be made to be involved, of course. There's a conscience clause and no one will be forced to do it, but I think we do have to talk to doctors. We do have to talk to all these communities who are concerned.

The AMA said, there needs to be much greater investment in quality end of life care, especially nationally; including palliative care services. It feels to me and why I oppose, is: is this the right time? Are we mature enough as a society? Do we treat our elders, our people who are ill, our disabled people, our communities, equally? Do we provide the right or sufficient health care? Or too much? Do we provide the resources for people to have a quality of life while they're alive and a quality of death? Are we doing that now?

To make assisted suicide into a medical issue changes everything. I watch TV and I see compelling arguments and compelling cases and people and individuals who want what's called 'the right to die'. But one person's right to die becomes another person's feeling that it's a duty to die, and I know, and you can say it to me, but nobody's gonna be dragged there. If you don't want it you don't have to have it. It's not as straightforward as that, because once it exists it exists, and as I say some of the worst coercion is choosing it yourself, because you feel you've got no option.

I made the show, I made Assisted Suicide: The Musical because I have done all of the serious political debates on this subject on TV in the UK. I hate the way that the debate is polarised in many respects and how we very rarely get the chance to properly discuss it in a grown up way, and we don't. TV wants you to have two opposing views and it to be great TV. That's what they want. That's what debate programmes want. In some respects of course that's how parliament works too unfortunately. The interesting bit - and where it's essential - is this middle area.

This isn't easy. It really isn't. It can't be rushed and it's very, very hard to get it right. I decided in the end that I could do all the news programmes in the world but actually the voices of those who oppose isn't often heard as loudly, I don't believe, or as often. There's very few documentaries of those who don't want assisted suicide. It's not as sexy. It's not as sexy calling for a better NDIS or hospice care. It's just not.

I mean we've got many documentaries in the UK of people traipsing off to Dignitas. Loads of them. We can't get enough of them in the UK. Can't get enough. It's the same story, and I'm not saying it's not an important one, but what we don't say is the other side, and that's a voice that needs to be heard obviously, so I made show, and the show despite the fact that really quite serious about the subject matter, is a comedy, but it's also really thought provoking. You'll hear some of the things I've said, but I also just wanted to open up this subject in a way that we're not often able to do and to think about it in a different way, and have more information and have more space, and laugh about it.

That might sound bizarre and counterintuitive but deaths, some of the funniest things that have ever happened to me have been around people who have been dying. In the Silent Witness show I do, I'm in forensics. I'm not in real life, obviously. The laugh, the humour in the darkness. We need to connect through that and music, as well, really helps with that and opens that up.

That's why I made a show I guess. I want to leave with a question in the words of Katherine McKinnon: There was a big, big debate down in Bristol in the U.K., around whether we should legalise assisted suicide, and I just liked her. Her words spoke to me anyway. She said: I'm not saying that palliative care is a panacea. There are always going to be people who want to die before their bodies do; but on balance the risks of harm of changing the law to me outweigh the risks of harm of leaving it where it is.

We mustn't be duped into believing the mantra that autonomy is king; that we can have whatever we want. This is a recipe for a dysfunctional society, but I will leave you with a question. What is worse, killing someone who does not want to be killed? Or not killing someone who does want to be killed? At the moment on balance, I think the former is worse. I think that's a useful question and that doesn't help your job, because you've got a really difficult job here, but it's a useful question. That's what I would like to leave you with.

You can view the video recording of the address by Liz and the address by local Victorian Disability Activist, Jax Brown HERE.

1 comment:

Unknown said...

This is the best most articulate statement that I have read....we should not be agreeing to assisted suicide being made legal, when there is so much more that should be done to help people feel that they have a life worth living, and can have a death that is as comfortable as it can be