Liz Carr speaks at Victorian parliament about assisted suicide

Liz Carr speaks at Victorian parliament about assisted suicide


– In a way, you said who I am. As I say 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 U.K., because in the U.K., in 2015, was 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, and what we were hearing is
the Lords were dealing with it. 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. It is that serious, and 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. The safety issue of are
the benefits to the few, are they outweighed by
the risks to the many, and they were viewed not to be. That’s where we’re at. We’re still, 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. That’s who I am. 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 Denson, where we’re two of the
few people who visited, and interestingly he thinks it’s fine. I don’t think it’s 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 Jack
does, 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 go 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. 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, om a formal level. At the moment the law acts as a deterrent. It does in the U.K. And that’s really useful
that it’s a deterrent, and 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 a practise, in 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. Now, 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 feel, and 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 medial 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 U.K. 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 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. There is in a way, in many ways, it is about us, and it will be, because we’ve both told stories and 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 bi thing for me. This line of, 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 is 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 for 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 about 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. It feels like why are we choosing these groups of people? I understand why. It’s 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 U.K., 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 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. Neither are am I about
the medical profession. Not again 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. What about when assisted suicide becomes a medical treatment? How does that fit into that? Baroness Jane Campbell. She’s in the House of Lord. She’s a disabled woman on a ventilater. 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 resucitate 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 diagnosis and prognosis, or the two, have to do all this other stuff as well, and how do they know, and 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? And coercion, do you know what, that’s 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. That 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. It was, 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. It’s 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 got a pack of tablets. We went to a conference. 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 in the 70, 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, and Luxembourg when people say 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 it’s 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. In the U.S. 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 it’s 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 is it. 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 heath. That they have prognosis, the diagnosis. It’s a serious incurable condition. There’s 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 be. 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. Then you go, 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 and difficult and 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 it’s a compelling argument. I know lots of people would disagree, 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 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. Now I acknowledge to
apparently the other side, if you support assisted suicide, then you’re 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 colleges, of 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 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. They consider end
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. To take it from an individual issue, well isn’t it really a social issue and that’s it. 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 U.K., and been disliked for
doing it, and also not. People thanking me for opposing, and saying what I believe, but 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. Yay. Or hospice care. It’s just not. Somebody in the U.K., I mean how many documentaries we’ve got of people traipsing off to Dignitas. Loads of them. We can’t get enough of them in the U.K. 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. Really, because you’re gonna meet, in the show that 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, and it’s a question I had in a debate and the debate is by, I want to make sure I get her name right. Katherine where are you? 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 outwiegh 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. Yes she’s opposed, but 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. (audience applause)