Select an episode:
Episode 1 - The Invasion of Death
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Andrew Denton: My name is Andrew Denton. I’m a writer and broadcaster who lives in Sydney, Australia. Here, we have no law to help the terminally or the chronically ill die, which means that good people are being forced to die bad deaths. I want to find out why.
Who am I to be talking to you about a subject as complex as assisted dying? I have no medical qualifications so what would I know? It’s true, I have no expertise, other than the expertise too many of us share – I saw someone I love die badly.
My dad, Kit, used to joke that he wanted to go by walking into the shallow end of an Olympic-sized pool filled with single-malt whisky and just keep walking. Sadly, that never happened.
Watching him die remains the most profoundly shocking experience of my life.
With my sisters, Jo and Pip, I stood helplessly by as Death picked up this strong man and shook him out until he was nothing.
Dad did not go gentle. Although clearly dying of heart failure, and obviously in great pain, he was assisted to die in the only way that Australia’s law then – and now – would allow: He was given increasing doses of morphine to settle the pain.
But morphine never did settle the pain, not his and not ours. The images of those final three days will never be erased.
Andrew Denton: Well, Pip, what are your memories of Kit in those last few days?
Pip Denton: Him being wheeled down from the ward down to the palliative, ah, ward, room, um, and being zonked out on drugs but in obvious pain from the movement of the trolley, and distress, and not knowing whether he was still there inside when we spoke to him.
Andrew Denton: Jo, what about you?
Jo Denton: That sense of this is not going how he would've wanted it to. Um, and feeling helpless and powerless around that to a large degree.
Andrew Denton: And my memory in particular is, you know, because we took it in turns to be there at night, is that all through this time, waves and spasms of pain went through Kit, and he'd moan and groan and twitch. And I remember thinking at the time, “This doesn't look like sedation to me; he's in real pain”. Have I misremembered that?
Jo Denton: I don't think so, no. I think there were times when that was clearly what was going on and at that point the drugs weren't enough to cut through all of that.
Andrew Denton: Dad’s last days were filled with the kind of suffering he would never have wished on anyone. The end, when it came, was violent. I needed to know. Why did my father have to die like that?
You’re listening to Better Off Dead, a podcast dedicated to finding out the truth about assisted dying: how does it work, who is it for, and is it safe? To do that I’m going to travel to countries where laws to help people die already exist. And we’re going to hear from people on all sides of this question. I’m going to speak to doctors, nurses, activists, opponents and, most particularly, the dying and their families.
The first person I wanted to speak with was our old family doctor, Vic Dawson. I wanted to know why dad had suffered so much as he died.
Vic Dawson: I think even at that stage they were still trying to treat his heart failure and still trying to treat his liver and kidneys medically, and they were using almost that double-principle of, if they gave him too much they would kill him, so they couldn't give him enough to give him pain relief. And I've never seen the logic in that.
Andrew Denton: That's what I couldn't understand. When he went into unconsciousness, he was still clearly in pain, so there was no life left for him in any meaningful sense.
Vic Dawson: There should've been no reason not to give him quite strong pain relief that would have made him deeply unconscious and non-responsive to pain. I don't think there's any excuse for that treatment.
Andrew Denton: Listening to Vic, I couldn’t help but wonder to whose benefit was dad kept alive for three more days of pain? Wouldn’t it have been better, instead, to help him to die quickly and peacefully?
Kit died 18 years ago. In the years since, whenever I talk about it, I’m struck by how many respond with similar stories of family members dying slowly, in pain, and, seemingly, beyond medical help.
Every time I hear it I think, “Surely we can do better than this?”
Then a few years ago I read an article by Tasmanian writer Margaretta Pos, about the final days of her father, Hugo, who lived in the Netherlands.
Margaretta described receiving a phone call from her stepbrother in Amsterdam telling her that Hugo, diagnosed with cancer 18 months earlier, “is dying and has chosen euthanasia”.
He has three days of life left, she was told, “Please come!”
When Margaretta arrived she found her father conducting his own wake.
Margaretta: He was the host. It was almost like, you know – people were coming and they were chatting. I can remember one man, who I’d never met – it was the president of his tennis club, and I heard him say, “Well goodbye, Hugo, it’s been a pleasure knowing you and having you as a member of the club”. It was like my father was going off on a tour somewhere or to live elsewhere! Not that he was going to die. It was very civilized. I was completely at sea in this ritual of death, but in fact looking back on it, it was really rather beautiful that you really could say goodbye to people.
Andrew Denton: So he made it widely known that he was leaving on Saturday.
Margaretta: Yes, widely known and everybody knew. He rang my mother in Australia and said goodbye to her. They’d been divorced for decades and decades.
Andrew Denton: Hugo’s last night was spent just with family. They had a final meal and talked of inconsequential things – all the big things had already been said.
Margaretta: And then we sat down in the sitting room. It was a full moon I remember, so we opened the curtains and he wanted to listen to Mozart. It was like a farewell concert.
[BOY SOPRANO SINGS MOZART’S ‘ALLEGRI MISERERE’]
Andrew Denton: When Margaretta arrived the next morning, Hugo, freshly shaved, and in pyjamas and dressing gown, admitted that when he had first woken up that morning, he had forgotten it was his last day.
Margaretta: Then he said that he had no particular thoughts, no regrets, his mind was a blank, and then he turned around and he said, ‘This is like waiting for Godot!’ [Laughing] Which made us sort of all laugh.
Andrew Denton: The doctor came promptly at 10.00.
Margaretta: My father lay down, my stepmother held his hands, and he nodded assent, and the doctor gave him an injection, and my father just said something before he went to sleep. But it was a light-hearted, lilting tone. And he went to sleep. And a while later the doctor had another injection and he looked at us to nod assent, which we did, and that put my father into a coma, and then some time later he held up a third injection, and we all nodded, and he gave him an injection, and that stopped his heart.
Andrew Denton: Though Margaretta had come to confront her father’s death, what she found, instead, surprised her.
Margaretta: It was life-affirming. It was definitely life-affirming. And I mean my father in that sense had a great death, if you can say something is a great death. I mean, we’ve all got to die. We all know that, but we shy away from the subject, particularly in Australia, and I think that’s one of the reasons is so much anti-euthanasia talk, because there’s this terrible horror about death, which I understand, but we have to face it. And my father faced death in the eye, and he won.
Andrew Denton: Margaretta’s story lit a fire in my brain. How is it that the Netherlands can help people to die humanely, but in Australia we can’t?
[FRAGMENTS OF 1996 NEWS STORY ABOUT NORTHERN TERRITORY EUTHANASIA LAW]
Andrew Denton: A lot of people don’t know this, but Australia was the first place in the world to pass a law giving terminally ill people the legal right to be helped to die. That was in the Northern Territory in 1995. But, within a year, that law had been overturned by the newly-elected conservative Federal Government. Only four people had been able to use it.
Were people happy to see the law gone? No. Every opinion poll taken in this country over the last decade shows overwhelming public support – in excess of 70% – for assisted dying. 70%! That kind of number is like crack cocaine to a politician. A no-brainer of an issue to get behind. Or so you’d think. But not in Australia.
Since that law was overturned in 96, none of the 27 attempts to pass a new one here have succeeded. It doesn’t make sense. Why can’t we help people who are in great pain and beyond medical help to die? Why can’t they die like Hugo, and not like Kit?
Catherine Foster: But we are gathering strength against the invasion of death. The truth is winning out, and we’re fighting back on the battlegrounds.
Andrew Denton: That’s Catherine Foster, a litigation lawyer from the States. She’s on the frontline in the war against assisted dying. I had discovered that she and many of the world’s leading anti-euthanasia campaigners were about to gather in Adelaide, the first time ever in the Southern Hemisphere.
You’ve got the voice I always wanted.
Paul Russell: Sometimes! [Laughing]
Andrew Denton: The guy pulling it together was local boy Paul Russell, who had quit his job five years ago to set up HOPE – an organisation dedicated to preventing the very law I would like to see happen. I wondered: where did that passion come from?
Paul Russell: My father was a unionist in his early life on the waterfront here. I think I gained from him a sense of justice that has been probably a dominant force in my life I think, a real desire to further humanity and to protect vulnerable people, to stand up for those who can't, and I guess to make the world a better place generally.
Andrew Denton: I don't want to criticise, but it's not working, Paul. The world is not a better place.
Paul Russell: [Laughing] Well, perhaps it would be worse if we weren’t around. I don't know.
Andrew Denton: In seriousness, it is that question of vulnerability that particularly drives your opposition to assisted dying or euthanasia laws?
Paul Russell: Yes, it does, yes it does. I have a son with a disability as well, which I guess it intensifies some of my thinking, and it has given me a relationship, a wonderful relationship to the disability community, and where I see this as very, very real.
Andrew Denton: Even though I’ve confessed to being the enemy Paul has graciously invited me to the symposium to hear their arguments. Unsure of what I’m letting myself in for, I walk into a small conference room, in a mid-range hotel on the fringe of the Adelaide CBD, to find about 50 people, mostly older, some in wheelchairs. I am made to feel very welcome and, as I look at the glossy program, sponsored by groups like Doctors Opposed to Euthanasia and Lives Worth Living. I am curious about what the case against looks like. What happens next I can only liken to being hit in the face with a moral and philosophical shovel.
Brendan Malone: I think about my children, and I think they are going to be the generation left to deal with a culture where suicide is normalised and glamorised if this sort of legislation gets passed...
Father John Fleming: Once you breach the inalienable right to life, non-voluntary euthanasia follows voluntary euthanasia as surely as the night follows the day. You cannot control it.
Kevin Yuill: It divides people into people who are disposable and people who are not, and that is a real problem. The insistence that consent makes the act good or at least benign is entirely wrong.
Father John Fleming: It should be seen in the broader context, philosophical context, of the eugenic impulse to relieve the world of unproductive burdens.
Andrew Denton: By morning tea, I am reeling. That phrase “the eugenic impulse to relieve the world of unproductive burdens” is going round and round in my head. Is this really what they think Australia will turn into if we allow assisted dying?
At the small merch desk a book on Nazi eugenics is for sale. I snap up a copy, along with one called Exposing Vulnerable People to Euthanasia and Assisted Suicide. Its author is Alex Schadenberg, an intense Canadian, and clearly the alpha male in the room. Alex has spent the last 12 years travelling the world, fighting the good fight against assisted dying. Along the way, he’s made some impressive connections.
Alex Schadenberg: I was at a conference in 1995, and the reason I met the Pope was because I brought my baby with me, Peter. He is my autistic son. We didn’t know then he was autistic, but anyway. We were the very last ones in the line, and so we ended up having all these pictures and we spoke to him for, I don’t know – 35, 40 seconds, and it was sort of shocking, because John Paul II was different because he actually spoke to you. He is actually looking in your eyes and speaking to you. That did affect me. That does stick with you, whether you're a Catholic or not. That does stick with you.
Andrew Denton: Alex can see no circumstance in which someone should be legally helped to die.
Alex Schadenberg: Once you allow that, you're actually allowing somebody in law to be directly involved with the cause of one other person's death, and it's a serious problem because the intentions of the person involved in it – how are you going to prove that? There's many times we found ourselves in difficult times in our life. Is the answer now to help someone kill themself?
Andrew Denton: It’s a real eye-opener to learn how these people see the world, and in a word, it’s grim.
At lunch I get talking to a schoolteacher from Victoria whose 26-year-old son used euthanasia advocate Philip Nitschke’s online forum to source the deadly drug Nembutal and take his own life. It’s a terrible story. Tom, from Belgium, tells me his mother was euthanased without his knowledge. Henk, from the Netherlands, has a similar story about his grandfather. The warnings are everywhere about what happens when you allow a law to help people die.
Kevin Yuill: If you want to see the future of institutionalising a culture of assisted suicide, let's look at what happened in Belgium. Let's look at the fact that the two 45-year-old twins were given euthanasia because they were going blind and they did not want to live any further. Let's look at the 47-year-old woman who had tinnitus who was granted euthanasia.
We heard about that. There was a reprimand for that.
Andrew Denton : Listening closely, I fill page after page in my notebook with ominous statistics: Euthanasia deaths in the Netherlands are going up by 15% every year, psychiatric and dementia patients are now sharply on the rise. The slippery slope, it seems, has become a precipice. And no-one is in greater danger than the elderly – as Nancy Elliott from New Hampshire emphasises in her talk on tactics.
Nancy Elliott: Elder abuse? Elder abuse is excellent. There is nobody in the world that denies that there is elder abuse, and some of the people that are most concerned about elder abuse but might be against us, can be turned to our side by explaining that this gives a very final avenue, to abuse an elder.
Andrew Denton : The disabled, too, are prime targets.
Nancy Elliott: Right now the disability argument is really kicking it. It's very powerful. Now will it always be powerful? We don't know. Two, three, four years from now, that may have holes kicked in it, just for different reasons, so we have to be flexible. You know, when one of our arguments dies, we need to be ready to pick up another one.
Andrew Denton : From what I’ve seen, these people don’t seem to be running out of arguments. But it gets worse. Under the blanket of euthanasia laws, Alex tells me, elderly, vulnerable people are being murdered in their hundreds in Belgium and the Netherlands.
Alex Schadenberg: So where we're seeing abuses a lot in both the Netherlands and Belgium, it's highly oriented towards people who are incompetent to make decisions for themselves. So what you see in the data – it's very recent data, and that data made it quite clear that about 1.7% of all the deaths were lives that were hastened without request.
Andrew Denton: Alex, who is at pains to point out that his data is all based on original studies done by Belgian and Dutch researchers, estimates the total number of unrequested deaths in Belgium at about 1000.
So is it your assertion that those 1000 deaths, or the majority of them, were in effect a murder because they were not deaths that anyone had consented to?
Alex Schadenberg: Murder, manslaughter – it depends on how you define it in the law. Yes, they are. They're deaths that occurred – that is, the doctors admitting that they intentionally hastened those deaths.
Andrew Denton: I’d heard a lot of heavy stuff today but nothing as heavy as this. Could it be right that the elderly are being murdered by the score? If it’s true, then this seems to back up what they’ve been saying – that these laws aren’t safe.
It’s been a long day. As the sun sets, Tom from Belgium grabs me. He wants my email address so he can send me some links to Nazi euthanasia videos.
I came away from the HOPE symposium feeling shaken. Shaken because they had made serious accusations about what was happening in Belgium and The Netherlands that I knew couldn’t be easily dismissed. But also shaken by their dark and paranoid view of the world. I couldn’t square the Australia they were describing – where a law based on compassion would mutate into a society in which the weak are disposed of – with the Australia I know. We’re the land of Neighbours, not Nazis.
I thought again of dad and his joke about wanting to die by walking into an Olympic-sized pool filled with single-malt whisky. Few get to dictate the terms of their death. But I suspect the way we would all like to die is close to universal. If we had a choice.
When it's your time, how do you want to go, Pip?
Pip Denton: Quietly. I'm happy not to rage. I'd like to go to sleep and wake up dead, effectively. As long as the cats don't eat me.
Andrew Denton: Yeah, I wouldn't trust them if I were you. You know what they're like.
Jo Denton: [Laughs]
Andrew Denton: What about you, Jo?
Jo Denton: Well I would absolutely want to know when, so that I could, you know, speak to the people I wanted to speak to, and then I'd like to go to bed and wake up dead. That, for me, would be – have a lovely meal, have a, you know, galoshes full of wine [Laughing] um, and then go to bed and that would be the end of it. But what about you?
Pip Denton: Yeah.
Andrew Denton: Oh, I think, ah, like most people I'd like to be with the people I love. I’d like to have people with me. Music that I like, I think to be as fiercely reminded as possible of who I love and who loves me, and I think that's the most you can ask – other than perhaps Scarlett Johansson in a bikini.
There was one other thing from my day at the HOPE Symposium that stayed with me. Troubled me, in fact. Beneath the warmth of their welcome, and the sincerity of their concerns, lay something altogether harsher. It was a willingness to judge those who ask for help to die in the most brutal of terms.
Here is Kevin Yuill, from the UK, a self-described “liberal humanist”.
Kevin Yuill: It reinforces the ideas of human beings as helpless and pathetic, unable to act for themselves. Whereas I contrast that with the humanist idea of the robust, independent, self-reliant moral individual. If you create this into a medical procedure, you take away the moral choice, the moral responsibility that a person takes for taking their own life.
Andrew Denton: For the people at HOPE, to seek the choice of assisted dying is somehow to be a moral coward.
Liz Le Noble: Oh my gosh! That's cruel. That's really cruel! So you're going to persecute me again! So not only am I dying, not only am I in pain, but now you're going to call me a coward? Really? Get real. Insane!
Andrew Denton: For Liz, who’s dying of cancer, that choice – or the lack of it in Australia – is about something far more excruciating.
Next week, we’ll hear Liz’s story and find out what it’s like to have to live, and die, outside the law.
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
[CLOSING CREDITS]: Better Off Dead is produced by Andrew Denton and Bronwen Reid for Thought Fox and the team from the Wheeler Centre. Visit wheelercentre.com/betteroffdead to hear the series and subscribe, and to learn more about the people and ideas from each episode.
Episode 2 - How dare you want to end your life: Liz's story
[Prayer bell chimes]
[Ethereal female voice]: There is no death. There is only me, me, me who is dying.
Liz Le Noble: It’s my birthday tomorrow; I am 48.
Andrew Denton: Happy birthday!
Liz Le Noble: Thank you.
Andrew Denton: What do you get a woman who is losing everything?
Liz Le Noble: Who's got Nembutal![Laughing] Who's got Nembutal. You know what? You give her humour. Thank you.
Andrew Denton: OK.
Liz Le Noble: Invaluable.
Andrew Denton: This is Liz. She’s dying of cancer. Liz wants to have a choice about how she dies. But, in Australia, there is no law for assisted dying, so the only way she can have any say over her fate is to live – and die – outside the law.
What is it like to live in fear that your death may incriminate the ones you love? That the only solution is to die alone? Welcome to Liz’s world.
Andrew Denton: You’re listening to Better Off Dead. My name is Andrew Denton. I live in Sydney, Australia, and I want to find out why, in my country, good people are being forced to die bad deaths – and why we can’t have a law to help them instead.
How did Liz come into my life? My producer, Bronwen, had gone to one of Philip Nitschke, Exit International workshops in Sydney to find some people who could explain to us why they were seeking help to die.
Bronwen was talking to an older man about pain – the group was made up almost entirely of over-70s retirees – when a glamorous businesswoman in her 40s, sitting in the front row, turned around and said ‘they can’t control your pain, let me tell you. I’ve been there’.
When I first met Liz she looked nothing like a woman who was dying. Corporate stylish, whip-smart, and full of energy, Liz looked every bit the business high-flyer she is. When I suggested she might, in fact, be a cancer charlatan she let out one of her trademark huge laughs. But Liz is no charlatan. Her cancer is very real. And very rare.
Liz Le Noble: One per cent of the world's diagnosis of cancer is neuroendocrine, and I had a 1% version of it. It is a neuroendocrine carcinoma. It is not just a cancer; it is a carcinoma.
Andrew Denton: In actual terms though, what does that mean?
Liz Le Noble: It means that it is a non-well defined cancer and they can't control it; they don't know how it behaves. but more than likely it was going to continue to behave badly.
Andrew Denton: You’re even an over-achiever in cancer.
Liz Le Noble: [Laughing] I agree. I agree! I am here because I am an overachiever!
Andrew Denton: Liz was told there was no cure and that all treatment would be palliative. To keep her alive, they hit her with everything they had. They blasted her with chemicals. They took to her cancer with the knife.
Liz Le Noble: So the first one was a complete abdominal hysterectomy, everything – ovaries, cervix, everything; everything was gone.
Andrew Denton: The list of Liz’s surgeries is dizzying.
Liz Le Noble: A section of small bowel, lots of my peritoneum, gallbladder, appendix, half my liver and little bits of chunks of the other half that he’d left. It was huge, it was huge.
Andrew Denton: Liz’s terminal diagnosis was two years ago. Defying all predictions, not only is she still clinging determinedly to life, she’s putting together a business start-up to supply cannabis resin for gravely ill people like her.
But Liz knows – and the doctors know – that treatment is forestalling the inevitable: A painful death of cancer. So being the go-to woman that she is, Liz has researched ways she could be helped to die. The best solution, she discovered, lay in Switzerland, where the Dignitas Clinic offers assistance to foreign nationals with a critical need. To apply, she needed the support of her specialist.
Liz Le Noble: So I said, "I've been researching into Dignitas. You may have heard of that". And he nodded. I said, "I need two doctors to sign off on this. Would you be one of them?" And he just sat there and he said, "No". And there was a big pregnant pause, at which time I felt like Alice after just drinking the "Drink me" drink. I was about that big sitting on the chair. That's when the real patient-doctor "I'm the doctor; you're the patient" level of feeling came into the room. I was figuratively biting my fingernails, going, "Alright, Liz, go on. Do it. Ask him. Ask him". "Could I just ask, Doctor, why you wouldn't do something like that?" "Because it means I would have failed at my job". It was just those words exactly. So I found that curious that it had nothing to do with me.
Andrew Denton: I'm thinking of a word that rhymes with curious – “furious”. I would have felt furious that it was about him at that moment and not me.
Liz Le Noble: Alright. You're on painkillers, you're in pain. You're scared. You've got cancer. You're going through chemo. You're still trying to understand what's going on. you're being told by doctors – that you don't have much longer. And here is a doctor and he invoked his God powers at that time. "Who are you? How dare you!" That's how I felt. I felt judged. Very judged.
Andrew Denton: And what was the judgement?
Liz Le Noble: The judgement was "You would actually consider ending your life?" Which is actually incorrect judgement. I am not considering ending my life. Cancer's doing that for me. I don't have the choice in that. I just don't want pain. And you being the palliative expert – can't control it, and yet you want me still to die experiencing it. And you judge me because I don't want to do that.
Andrew Denton: Liz knows all about pain because she is one of the unfortunate people for whom even the strongest drugs that palliative care can offer barely touched the sides. Ever wondered what it’s like to be so doped up on pain relief that you can’t even tell people it’s not working?
Liz Le Noble: And be floating in a psychedelic-coloured cube where you can't speak because you have got locked jaw from the drugs, you know that you are writhing around on a plastic sheeted bed, your hands are like they're clenched and you can't talk. You can't talk, and you are completely vulnerable and at their mercy. And I was like that for days.
Andrew Denton: The image I get as you were describing that is that it was like you were locked in a scream.
Liz Le Noble: Yes! That's exactly right. That's how I felt. And the fear of that, the fear that you feel. Nothing takes that anxiety away. You still have it. So I think probably when you are in that dying stage, that is exactly what it's like.
Andrew Denton: I sense that fear just hearing you, and I don't know what I would be more frightened of – will this thing ever stop or am I going to die?
Liz Le Noble: Well even at that point you still don't want to die. … But I remember thinking, “Surely in modern medicine, modern science, I can't believe I'm actually experiencing this”.
Andrew Denton: Plan C was to try again, only this time from China.
Blocked by her specialist from applying to Dignitas, but still determined to have a choice about how she dies, Liz turned to Plan B. She joined euthanasia advocacy group EXIT International, bought a copy of The Peaceful Pill Handbook and, using that as a guide, ordered the lethal – and illegal – drug Nembutal, online, from Mexico.
It never arrived.
Along with my producer, Bronwen, I am at Liz’s place the day the package arrives.
Liz Le Noble: Push and turn. So the lid has come off.
Andrew Denton: That's a lot! That looks like a lot.
Bronwen Reid: It does, doesn’t it?
Liz Le Noble: Look how much is in here! We are holding a bottle that is...
Bronwen Reid: Is this your first sighting of it, Liz?
Liz Le Noble: Yes. Jesus Christ! Look, I have already got it on me. That is enough to make me go to sleep. I've just got a little bit on the tip of my finger. That just looks like, I don't know, what’s that – sherbet we used to get in the ‘80s.
Bronwen Reid: Ah yeah, yeah, yeah, yeah!
Andrew Denton: Liz has asked us to come over because she needs to test the white powder to make sure it is pure enough to kill her. Not a task she wants to face alone.
Liz Le Noble: This is ridiculous that governments make me do that. This is really ridiculous. Seriously guys, come on! We should have a pollie here.
Andrew Denton: For Liz there is an extra urgency. Two days earlier she admitted herself to hospital with severe vomiting.
Can you just quickly tell me about – I know you had more scans in hospital – what did they show?
Liz Le Noble: Well, I have got weeks to live. I just got the news this morning.
Andrew Denton: Faced with the prospect of her imminent death, Liz is terrified that the dying will run out of her control and has rung Melbourne doctor, Rodney Syme, for guidance. In defiance of the law, Rodney has assisted over 100 people with advanced incurable illness to die, most with Nembutal.
Rodney Syme: I would suggest you take 12 grams. It is an absolutely completely reliable dose. You could either mix it with something that will sweeten it or drink it and then follow it with a chaser of something sweet that you.
Liz Le Noble: Yeah, scotch chaser is what I was thinking.
Rodney Syme: Just use it to rinse your mouth and get rid of that bitter taste. OK?
Liz Le Noble: The other thing, Rodney, is because this is affecting my liver, and the reason I was hospitalised is I was uncontrollably, violently vomiting.
Rodney Syme: Well have you got anti-emetic?
Liz Le Noble: I do but the vomiting broke through the anti-emetic.
Rodney Syme: OK. You would want to preload yourself with whatever anti-emetic you've got that is working.
Liz Le Noble: Yes, and do I take that for a couple of days beforehand, Rodney?
Rodney Syme: Twelve hours would be sufficient.
Liz Le Noble: Right, OK. So It doesn't make you sick. That's important to know.
Andrew Denton: This is the end of Liz’s life they are talking about. In a reasonable society, this wouldn’t be happening as a clandestine conversation on the phone.
Rodney Syme: You can be absolutely confident that it will do what it should do and that you will die very peacefully.
Andrew Denton: As I listen in to Liz’s questions, I am keenly aware that she has a deeper concern than whether or not the Nembutal will work.
Liz Le Noble: Can I ask, Rodney, your… [tearful] Sorry, just give me a minute.
Can I ask your opinion about people that you have been with when they have drunk this – you have been with people when they have drunk this, yes?
Rodney Syme: Yes, I have.
Liz Le Noble: Have they had their family with them?
Rodney Syme: Yes. People are very worried that if they have their family with them, that the family will be in some jeopardy. Now that is completely wrong for a number of reasons. The first one is that nobody knows whether they are with them or not at the time. Who would know?
Liz Le Noble: Well it is just that I talked to my son about this, because that is one of the things that you do, you talk to people that you love and you tell them about what your plans are, and I started thinking about the people that…and I almost feel sorry for them …but in one way or another they are either going to be with me when I die peacefully or be with me in a hospice over days, weeks and months and...
Rodney Syme: When you die badly.
Liz Le Noble: And die badly, and that's more traumatic.
Rodney Syme: So what memory do you think they would have if you die badly, compared to that where you’ve [indistinct]...?
Liz Le Noble: Yeah OK, I have to just think of that.
Rodney Syme: we have to change the law, so that this can be done openly and without all this hoo-hah and secrecy and so forth. It shouldn't have to be. I t should be something, an option, which people can take or not take depending on their circumstances and beliefs, and it should be just that you could take it, you could tell your doctor you're going to take it, he knows, he has provided it, and he can be there and he just writes a death certificate.
Liz Le Noble: That’s right. Well thank you, Rodney. I'm going to go ahead and we’ll test all this. Should we have any issues with it, can I phone you back, please?
Rodney Syme: Of course you can – any time.
Liz Le Noble: And you would help me out?
Rodney Syme: Absolutely.
Liz Le Noble: Thank you very much, Rodney.
Rodney Syme: I wish you all the best. You are a very brave girl.
Andrew Denton: I found it hard to listen in to that call and hear the anguish in Liz’s voice. As if it’s not brutal enough that she is dying – and has to plan how to do it in secret – Liz has a 22-year-old son who is due to be married in 10 weeks. Where do you even begin with that conversation?
Andrew Denton: Does Callum know that you have obtained Nembutal?
Liz Le Noble: Nope.
Andrew Denton: Are you going to tell him?
Liz Le Noble: Oh he knows I've been – I've talked about it with him, yes, because that's one of the things.
Andrew Denton: Despite Rodney’s assurances, Liz is still deeply afraid of what might happen to anyone who is with her when she dies. Nembutal is an illegal drug. Her nightmare is that her son might be charged with assisting a suicide.
Liz Le Noble: Callum's a big, you know, gorgeous-looking boy, gorgeous heart, strapping. Bluff and bluster, you know – "Oh, Mum, don't talk about that! I've seen you stare down death". Blah blah blah, and do all of that. "Thanks, honey, that's great. But no, really, we do have to talk about this. Me getting this is illegal but, pfft! So what? But you being with me when I take that is apparently illegal."
And that's when Callum stopped his bluff and bluster. You could feel the change in the atmosphere of our talking. And he's looking at me and he said, "So what? What are we supposed to do? We sit there and we're there with you while you drink it and then we lock up and go home and sleep in bed knowing that you're dead in your bed and come back the next morning and go, “Oh, look at that. Mum's died,” and phone the police? The way he... It was pretty much like that and at the end of it he had such big tears in his eyes that... It's dreadful and there's no answer to that. I don't know what the answer to that is. Am I being cruel to him by..? That would be cruel. I think that would be cruel. And I don't know how to handle that.
Andrew Denton: So here I am, standing in Liz’s kitchen, on a brilliant, sunny, Sydney afternoon, watching as she and Bronwen carefully test the Nembutal to see if it will kill her. Using a kit Liz bought from Exit, a calculator, and scales borrowed from her hairdresser, the powder is measured, weighed, diluted, baked, then weighed again. The process – exhausting and exacting – takes six hours. An afternoon out of the life of a woman with maybe only weeks to live. Frankly, it seems cruel.
The only good news: the test is positive. The powder is pure. Now comes a much harder test – when to use it. I ask Liz if she knows.
Liz Le Noble: Only when I know – when the gate has closed and locked behind me and I am actively dying, that's when I will take it. What the nanny state country that we live in is making me do is take it probably a week or maybe a month earlier, if I am lucky to be able to work out when that is, than when I have to.
Andrew Denton: Because you have no professional help or guidance in this?
Liz Le Noble: No. Only me, only me, and I have to do my kitchen table medical degree determination of that. But it's the logistics now. We have done extraordinarily well. My stress has been relieved again significantly. We know what we have got; we have got the pure stuff. We know that.
Andrew Denton: Simply having the means to control her death has given Liz peace of mind. But three days later I get a call asking me to come around to her place. When I arrive she’s with her brother Jason. They have spent the morning shopping for coffins.
Liz Le Noble: I have chosen a coffin. We have done all like hard stuff today.
Andrew Denton: What was it like to choose a coffin?
Liz Le Noble: Yeah, that was a bit strange, wasn't it?
Liz Le Noble: We went to the one at Bondi Junction there and it is just downstairs in a big cavernous...
Jason: In the garage.
Liz Le Noble: Garage, with the $550, the $950, the $4000, right up to the $90,000 ones.
Andrew Denton: I'm sorry to digress but does the $90,000 one have a bar? What is it?
Liz Le Noble: I think it's the wood and the carving.
Jason: They didn't have those in stock at the moment.
Liz Le Noble: Yeah.
Andrew Denton: For $90,000 I expect another trip up top. Do you mind if I ask what you chose?
Liz Le Noble: I chose the second from the bottom but it just is not important to us. What was more important is, you know, the feeling, the venue, you know.
Andrew Denton: It is deeply weird to be talking about coffin-shopping, and – not for the first time – I marvel at this strong woman who seems to have said, “OK, Death, if you’re going to cohabit, these are the rules”.
But then Liz tells me her news – the real reason she has asked me over. The reason Jason is here too.
Liz Le Noble: The Prof finally phoned me back this morning – this is after days – finally phoned me back, and you could tell in the tone of the voice, it was very different, and he said, “Well, Liz, the lesions are growing enormously fast again, as fast as, if not faster than when we first discovered it”.
Andrew Denton: Liz has learnt that there’s a real danger of her bowel being blocked by the growing cancer. That changes everything.
Do you know what that means?
Liz Le Noble: A feeding tube goes in, and hence my inability to drink anything.
Andrew Denton: Which means no Nembutal.
Liz Le Noble: No Nembutal. And an undignified death in pain.
Andrew Denton: I hear something I haven't heard in your voice previously, which is fear.
Liz Le Noble: Yeah. Yeah. I'm starting to get fearful. So far, Andrew, I'm not fearful of death, still. I don't want to die, obviously. I am fearful of that end road to death when you are actively dying, I'm fearful of that. I know they can't control my pain. I know, I have been there enough; I have been in hospital enough.
Andrew Denton: Despite her fear of hospital, Liz has decided to undergo two more 21-day cycles of chemotherapy. At best, this gives her a 50/50 chance of avoiding a bowel obstruction.
So – just doing the maths here – 42 days, does that get you to your son's wedding?
Liz Le Noble: No, it doesn't. And in 42 days if it is not working, it very easily will block.
Andrew Denton: And if it's not working, that blockage could happen at any time?
Liz Le Noble: That's what he said, so that's what alarmed me this morning.
Andrew Denton: Liz is now faced with the terrible calculus of dying. Does she try and hang on till her son’s wedding and run the risk that she will suffer the death she fears? Does she say goodbye to everything she loves and take Nembutal? And, if she does, how can she do that without incriminating her family?
Liz Le Noble: I can't take it in hospital. So I’m going to have to exit hospital, and then where do I go? Do I have to go to a hotel?
Andrew Denton: As I listen to Liz and Jason talk it through, there is a rising sense of panic in the room.
Liz Le Noble: I was kind of strategising in my head well I would have all of my medical papers with me just laying very clearly out beside, I would probably even have a pack of sleeping pills there, prescription, with my name written on the front of it – strategising it down as much as I possibly can, and Jason, why are you smiling? Because...
Jason: I'm not smiling.
Liz Le Noble: You're not smiling but you're thinking that I'm giving this away, but I'm fucking trying to get a strategy together!
Jason: I agree, but I'm not sure that at this stage – we haven't got the strategy together. Once we have the strategy...
Liz Le Noble: All right, tell me then – what is the strategy?
Jason: Anyway, having tablets on the sideboard is not necessarily...
Liz Le Noble: A good one or a bad one, but it's one that we need to talk about, right?
Jason: Exactly. I agree.
Andrew Denton: And the tablets are there, you believe, as a mask for what has actually happened?
Liz Le Noble: Yeah, and meaning – I was strategising that it would be a full box, let's say of just something like Stilnox, so it is quite obvious that there is only one left in it. Talking that through as a decoy. But once I drink this, I have maybe 60 seconds – some people fall asleep mid sentence – 90 seconds maybe, and then I am asleep.
Andrew Denton: So you were thinking you are on your own when you drink this?
Liz Le Noble: Yes. Well, what do I do? Because there is CCTV in a hotel, isn't there, of someone slipping into a room and slipping out?
Andrew Denton: Again, that fear of what will happen if someone is with her when she dies. When Liz excuses herself to go to the bathroom, I asked Jason what he first thought when she told him about her plan to use Nembutal.
Jason: We have had some interesting discussions about it because I think it's a pretty extreme thing, but I've come around to the fact that I support her and I will do what I can.
Andrew Denton: You say you have come around. What was your first response?
Jason: You fight to the death; you don't give up in any way. I now see that that is not necessarily the smartest, it’s not the bravest, it’s not the most courageous thing, but if you look at all other options, and that is the option to go through, I’ll support her.
Andrew Denton: It’s terrible maths you have to do, and yet I have spoken with people who firmly believe that Elizabeth’s choice is an indication that she does not value her own life.
Jason: Ah yeah, I would say that that is patently bullshit. It is not a case of valuing life; it is a case of valuing the beauty of life. Life without quality is not life at all. It is a very simple thing. Elizabeth is a real fighter. She has been a fighter in business; she’s been a fighter in life. I'm proud of her. I'm proud of what she’s doing. What I wouldn't want is people to go too soon, to take an early option, but it's a fine line between an early option or leaving it one week too late.
Andrew Denton: For Jason, like Liz, there remains a fear about what his involvement might mean.
Jason: I have a wife, I have a family. I support her. What level do I go to, to be able to give her full support without – I'm not going to go very well in jail. So I don't know at this stage where the line is that I cross. If I was comfortable in my own head as to where we stand, that would be a different matter. But that’s what I’m saying, there's no real book that you go to that gives you the idea of, say, if you inject them, you are guilty, if you watch them drink three bottles of vodka and pass into a coma and die, you are not guilty, because you didn't do anything to stop it. If they take Nembutal and you didn’t stop them taking it, are you as not guilty as you were not guilty with the three bottles of vodka? That's the blurred line that nobody knows.
I don't think anybody should die on their own. They should be surrounded by the people who love her – love them.
Andrew Denton: When Liz rejoins us, something has shifted in her. Her anxiety has given way to anger.
Liz Le Noble: Do you know what, guys? I think I just made another decision. I think what I have just done is I have crossed the threshold of asking too much, and whenever I started this journey the thing I was angriest about was that I would have to drink it and be alone. But I should have just shut my fucken’ mouth and just gone, “I’ll do it,” and I’ll just do it on my own and I’ll curse the – make a few voodoo dolls of bloody – some politicians. Nup, I’ll just have to do it on my own.
Andrew Denton: It’s a terrible thing that’s being demanded of this dying woman – and her family. But it’s what happens when there is no law to help her. It’s probable that no charges will be laid against Callum or Jason for being with her when she dies using an illegal drug. But Liz can’t be sure – and why should she even have to ask the question?
Why should anyone be forced to die this way? I think back to when we first met and I asked Liz, in a perfect world, how her death would be.
Liz Le Noble: So if I was to have it in an ideal world, way down the track, I'm hoping, I can see myself laying in my bed with my son and my daughter in law, my brother- and sister-in-law just around me, maybe have a glass of Moet. And not prolong it. I don't want to have a meal or anything like that. It's just, like, got to do something and here we go – "I love you and goodbye!"
[Tearful] I imagine holding Callum's hand. I don't think, you know... I imagine holding Callum's hand and thinking about his birth at my death. That's it. I'd like it to be peaceful and I'd like it to be without the anxiety of fear of what's going to happen to these people that are with me now.
Andrew Denton: Liz made it to Callum’s wedding, where, in her own words, “This ex-Logan chick rocked it right”. Having fought fiercely against her disease for years, Liz died nearly four months later while under sedation in palliative care.
Liz was just one of a growing number of Australians illegally importing Nembutal. If you’d like to know more, head to the episode page at wheelercentre.com/betteroffdead .
Next episode, we’re going to meet the man who Liz turned to in her hour of need, Australia’s oldest outlaw, Dr Rodney Syme. For the last 20 years he has been publicly assisting people to die and challenging the law to do something about it. Why would a respectable 80-year-old surgeon run the risk of jail? And why does the law not stop him?
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
Episode 3 - The 80-year-old outlaw
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
[ABC 77 4 radio ID]
Jon Faine: Steve from Point Lonsdale's on the line. Good morning, Steve.
Steve Guest: Morning, Jon.
Jon Faine: What can we do for you?
Andrew Denton: On a cold winter’s morning in 2005, top-rating radio host Jon Faine took a call from a listener for which he was completely unprepared.
Steve Guest: I can't see any Christian compassion. I'm dying an awful death.
Jon Faine: You're what, sorry?
Steve Guest: I'm dying an awful death of cancer. I have cancer of the oesophagus, which means that I can't swallow. I'm as good as dead now, Jon. I've probably got less than a fortnight to live, at this stage. And for the past few months, I've had no quality of life whatsoever. I'm in pain 24 hours a day. I can't eat, I can't do anything; I'm as weak as a kitten. I can't even hang washing on the line, and I want my life to end. And that's all I ask. And these bastards who call themselves Christians, they won't let me have that death, Jon. And that's all I want now. I want a pill in the cupboard that I can reach for, and take it, and end this nightmare that I'm living at the moment.
Andrew Denton: As Melbourne listened to Steve Guest’s desperate wish to die, one man stepped forward. His name was Doctor Rodney Syme, and he is Australia’s oldest outlaw.
Andrew Denton: My name is Andrew Denton, and you’re listening to Better Off Dead.
A quiet, leafy street in one of Melbourne’s most exclusive suburbs – not where you expect to find a man who’s been openly baiting the law for over a decade.
80-year-old Rodney Syme believes that patients who are suffering unbearably, and who are beyond treatment, should be able to ask their doctors for help to die. Even though it’s illegal in Australia, for more than 20 years, he’s been providing that help. According to Canadian anti-euthanasia campaigner, Alex Schadenberg, this makes him a threat to society.
Alex Schadenberg: I think it's a complete injustice that they have not brought Rodney Syme to justice, and the reasons are very simple. These people by being wild cowboys – they're the worst of the worst.
Andrew Denton: So how did a respectable, 80-year-old urologist come to be a law-breaking cowboy, the worst of the worst? It began 40 years ago with his patient Betty, who was dying of kidney cancer.
Rodney Syme : She had neuropathic pain due to nerves being irritated and compressed, and it's the worst possible pain. Effectively you need an anaesthetic to relieve it. So I used to visit her every day and see what could be improved, and I could hear her screams as I entered the hospital foyer. She was on the first floor. And it was agonising. I would come to visit her and sit in my car – I can remember it well – for 5 minutes, trying to summon up the strength to go and see her. That was bad enough for me. Imagine what it was like for her and her family!
Andrew Denton: Impotent in the face of Betty’s pain, Rodney could have chosen to look away. But he chose differently.
Rodney Syme: I couldn’t get it out of my mind. I just felt that was the most appalling thing that could happen to anybody, and I thought to myself if I'd been in that pain, I didn't have the slightest doubt that I would have ended my own life rather than go on like that. And of course I knew that that was possible for me. I was a doctor and I had access to medication, I had colleagues who I knew could help me if I needed help. So I thought, “What’s ethical about me being able to end my own suffering but my patients have to go on?” And that really changed my whole life.
Andrew Denton: Three years later, Rodney was confronted by Len, a man with incurable bladder cancer, whose treatment was only prolonging his death.
Rodney Syme: And I made the urologist’s response of saying, “Well, we’d better put you into hospital and make you more comfortable,” and he looked me in the eye and said, “Isn't there something else we could do?”
Andrew Denton: Were you quite clear that was what he was asking?
Rodney Syme: I hadn't the faintest doubt. It couldn't have meant anything else.
Andrew Denton: Unable to ignore his conscience, this time, Rodney decided to act.
Rodney Syme: I wrote a prescription for sleeping tablets, the maximum quantity that was allowable, and I said to him, “If you go home and take these, you probably won't wake up”. And I knew it was the question he was asking because the change in his face was dramatic – from somebody who was being crushed by his illness, his eyes lit up and a smile of thanks came across his face.
Andrew Denton: That night Len took the tablets. But they were not enough.
Rodney Syme: The naivety of it was that the medication I was prescribing for him was not adequate to do what he wanted. He did go into a deep sleep. His daughter came and found him. The police broke into the house, and he was brought back into hospital and he actually did die essentially without waking up, but it took about a week for that to happen. So it was a very naive, impractical outcome. It was clear to me that it was potentially dangerous for me to have done that. I hadn't thought about it. Anyway it led me to think more deeply about the whole matter.
Andrew Denton: Rodney started to read widely about assisted dying. He spoke out publicly in support of it. Other patients came to him, and he assisted in what limited ways he could. It wasn’t until 18 years after his clumsy attempt to help Len that he was fully confronted by the magnitude of being asked to help someone die.
Andrew Denton: Can you tell me – when was the moment when you realised that you were outside the law and at risk of prosecution, and knowingly so?
Rodney Syme: I guess this happened with a woman who had multiple sclerosis. She was virtually completely paralysed. She had attempted to end her own life. This was before I met her.
Andrew Denton: Alice was in her fifties.
Rodney Syme: She was frightened to have another attempt, but eventually got in touch with me. And I visited her, and indicative of my fear at that time, I remember well, I parked my car about 300 metres away from her house so it wouldn't be recognised that I was actually visiting her, and I crept up the street into her house hoping nobody would see me. We had a long talk, and she had no medications that she could take which would reliably end her life. I said to her she should have a chat with her doctor and see what he might be able to do. He was not helpful. I said, “You could find another doctor”. She said, “No, there’s no doctor who will come and visit me”.
Andrew Denton: Rodney was unsure what to do.
Rodney Syme: Following that she sent me a letter which said how disappointed she was that I couldn't help her and was there anybody else that I could put her in touch with. It was clear that I had failed her, and I thought, “I can't just leave this woman in this dreadful condition”. When I met her she was lying on a trolley, she couldn't move any limbs, she was catheterised; she was in a very bad state. And again my conscience kicked in and said, “Look, this woman is chastising me for cowardice,” and it was. I wasn't prepared to stump up, and I thought, “No, I won't let that happen”. I had to make a really serious decision as to whether I was going to assist this woman to die. I had never done it before.
Andrew Denton: Rodney researched medication that would end Alice’s life. He then put her into hospital under his care until she died peacefully.
Andrew Denton: Assisting a suicide carries a maximum 5-year jail term in Victoria. But, to his surprise, Rodney found that the law didn’t want to get involved.
Rodney Syme: Because I was publicly saying that I was helping people I thought well maybe the police will get a search warrant. That never happened. I was interviewed by the police on up to nine occasions and they were sympathetic and apologetic and just going through the motions, so I gradually formed the opinion that really the authorities were just trying to evade this issue.
Andrew Denton: With each new public statement, more and more people approached Rodney for help.
Rodney Syme: They had powerful arguments for needing advice and assistance. I found I couldn't deny them the respect of talking to them and in some cases helping them. That is an interesting point, because in many, many cases just talking to them was powerful therapy, and many of them didn't need anything more than that.
Andrew Denton: It was 22 years ago that Rodney helped Alice to die. And since then?
Rodney Syme: It would be over 100, I would say – more than that, more than that. I've got no notches on my belt or anything like that. You do what you have to do.
Andrew Denton: If you've helped roughly 100 people to die, how many people would have requested your help, do you imagine?
Rodney Syme: Well, I have counselled well over 1500 people – not all of those would be wanting to die.
Andrew Denton: I’m curious. How does Rodney decide who to help and who not? In the absence of any guidelines, what criteria does he use to turn someone down?
Rodney Syme: You do get a wide range of requests, and some of them are clearly based on overreaction to the circumstances that they are in. For example, I can remember a couple of people with cancer which was eminently treatable, but people's minds just sort of freeze. They say, “Cancer – I can’t bear to go through that, I want to end my life”. The help they need is to be advised to reconsider their situation and undergo treatment. There are people with no physical illness whatsoever but have clearly got psychological disturbance. And they have tremendous suffering. But I have never assisted anybody in that category, simply because I don't have the training to make that sort of decision. I have had people who have lost all their money, you know. They are suicidal in fact. They need good psychological counselling. They have got a situation which can recover with the right treatment, so I advise them to get psychological help and point them to a good person. But they are not difficult to detect.
Andrew Denton: The people coming to Rodney were in unbearable and untreatable pain, patients for whom their doctors could – or would – do no more. The more he helped, the more Rodney learnt that even the offer of help was powerful medicine in itself.
Rodney Syme: I’ve had patients who’ve been absolutely distraught about their circumstances. You give them medication, involve them in a careful discussion, give them support and their whole demeanour changes. You relieve that terrible anxiety and sense of having no control. You give them control and the pain diminishes.
Albert Leonzini: My name is Albert Gabriel Leonzini. And my age is 70. And what do I do? Nothing.
Sandra Morris: [Laughing]
Andrew Denton: Albert Leonzini lives with his partner Sandra Morris. Faced with a crushing illness he has turned to Rodney for help.
Albert Leonzini: I do nothing – because since I was diagnosed, six months ago, I haven’t been able to do anything. And that's given me an excuse to be a bludger.
Sandra Morris: [Laughing]
Andrew Denton: Albert has a disease so ugly that, in Australia, it has its own nickname – “the bastard”. It’s motor neurone disease, and medical science currently has no way to cure it.
Albert Leonzini: Well it was very easy to research, very easy. Because basically it says, “We don’t know where it comes from, we don’t know what causes it, there is no cure, so go home and die”. So you have to accept it. There's nothing you can do about it.
Andrew Denton: For those that don't know anything about this disease, can you describe on a day-to-day basis what it's like to live with?
Albert Leonzini: Well it's restrictive. Because I can’t drive, I can’t walk. And, you know, everything's been affected. So my life constitutes of lots of rest in bed, lots of rest – up to 20 hours a day. I get up for breakfast – two hours for that, and I get up for dinner – another two to three hours. So nearly 20 hours a day in bed.
So that’s where I am. And it hasn't really killed me, in the sense that I don't sort of say, “Oh, what kind of a life is that?” I don’t say that.
Andrew Denton: You still seem very full of life to me, notwithstanding the routine that you have to live. What are the joys in your life still?
Albert Leonzini: Sandra. She’s my strength, she’s my carer. She’s everything.
Andrew Denton: Sandra and Albert have been together almost all their adult lives.
Sandra Morris: We didn't get married.
Albert Leonzini: Didn’t get married.
Sandra Morris: No. We chose not to be married – well we just never…
Albert Leonzini: I didn’t want to get married because I was waiting for the right woman.
Sandra Morris: [Laughing] That’s 45 years he’s been waiting.
Andrew Denton: So Sandra, you are – if I can put this romantically – you are a placeholder.
Sandra Morris: That's right! Absolutely. No, we, neither of us – it was just not important.
Andrew Denton: Albert had always believed in his right to control how he dies. But in Australia – because the law denies him that right – believing it, and knowing what to do, are different things. Then Sandra heard about Rodney Syme.
Sandra Morris: And so I rang up and made an appointment so he came here and he met Albert and me and chatted and put us at ease instantly about choices.
And from that moment we had – I mean you can say how you felt, Albert – but I felt the most incredible relief, right?
Albert Leonzini: Rod’s a great guy. He’s a great guy. Because when you’re told you're going to die the first thing you think about is the pain involved, right? And Rod made me feel very comfortable, because he said, you know, “We know what to do, it’s not going to be painful at all; you're going to be in charge. It's going to be your decision”.
Andrew Denton: So when the time is right he will supply you with Nembutal?
Albert Leonzini: Yeah.
Andrew Denton: And you will administer that yourself?
Albert Leonzini: He’s even told me how to do it, which is just swallow it.
Andrew Denton: How will you know the time is right?
Albert Leonzini: That's a good question. Rod said that I’ll know. You know when you become weaker and weaker, less and less energy, harder breathing, harder swallowing. Breathing and swallowing is the key.
Andrew Denton: Sandra, you’re entirely comfortable with this?
Sandra Morris: No. No, I agree with it, but I'm not comfortable with it, right? On the one hand I think, well that's the way it should be, because that's what he would want – to be self determining. He's been self determining all his life. And at the most important decision in his life he’s not going to be allowed to decide for himself? That doesn't make any sense, right? On the other hand, you know, as his partner to know that he could decide that and then I'd lose him, it's very scary.
Andrew Denton: Well when the time comes, Albert, will you share it with Sandra or will you do it quietly?
Albert Leonzini: No, no, no. Sandra will be in the middle of everything. She’ll be in the middle of everything. Yeah, that’s the deal.
Andrew Denton: There are those who believe that assisted suicide is not an act of bravery, it's an act of cowardice – that you're not valuing life as it was given to us. How do you feel about that?
Albert Leonzini: Well my answer to that would be: “Who gave us life?” – right? In my case, because I was born Jewish, my first question is: “Why did Moses have to climb Mount Sinai to speak to God and to get the Ten Commandments? Does God have a hearing problem?”
Sandra Morris: [Laughing]
Albert Leonzini: And if he did, and he created the world, he would have known where Mount Everest is, right? He would have said, “Sinai, yeah, but can you get to Everest? It’s easier to hear, it’s much easier to hear”.
Andrew Denton: [Laughing]
Albert Leonzini: So that was my first – when I was a very young child.
Sandra Morris: [Laughing]
Andrew Denton: Good questions.
Sandra Morris: So he's been irreverent all his life as well. You can tell, can’t you?
Andrew Denton: I can. And when you do pass on, and you meet God, what are you going to say to him, Albert?
Albert Leonzini: Oh, I’m going to say I’m sorry.
Sandra Morris: [Laughing]
Andrew Denton: Albert is deeply grateful to Rodney for offering him control over the grim death that MND would otherwise bring. What surprises him is that Rodney doesn’t want to hide what he’s doing.
Albert Leonzini: Initially I thought that he might manage it in secret, so that we were all breaking the law but, you know, we could keep it secret. Then I found out that it’s the opposite. He doesn't want to keep it secret.
Rodney Syme: Well the law is a blunderbuss. What it says in the Crimes Act is that it is a serious criminal offence to aid and abet suicide or to incite somebody to suicide. And for years and years and years that has been interpreted that if a doctor were to do what I do, that I am breaking the criminal law. What I have done is to help people to end their own lives. I've not ended anybody's life.
I want people to go on with their life as long as they possibly can, but if they reach a brick wall and there is nothing you can do to relieve their suffering and they are requesting, of sound mind and fully informed, they are requesting help to die, then I believe I have a duty to do that.
Andrew Denton: Rodney wants to provoke the law so that a new and more compassionate one can be written – one that allows people with unbearable and untreatable suffering to request assistance to die.
Rodney Syme: Opponents to change say, “Oh, we are making decisions about whether you will live or die”. Rubbish! You are making the decision. If you come to me and say, “I have intense suffering and I want help to die,” it is arrogant of me to say, “Well, no, you don't have enough suffering”.
Andrew Denton: Suffering. For Rodney, this is the key.
Rodney Syme: It is not a particular illness, it is not how long they have got to live. It could be, for example, somebody with multiple sclerosis – a chronic paralytic disease which lasts for years and years, and people can spend any number of years in the end stages in terrible suffering. There can be people with – chronic rheumatoid arthritis is another very good example, whose almost every joint in their body is riddled with arthritis and pain. They may not have a particularly obvious point at which they are going to die, but their suffering can be intense. A person, for example, who has had a profound stroke and is paralysed and speechless but can go on like that for years in intense suffering. Are these people to be excluded? I don’t think that’s fair. The critical point is suffering, intolerable suffering which is unrelievable.
Andrew Denton: Rodney wants to see a law written using safeguards similar to those that have successfully worked overseas. The first of these is that the person requesting help to die has to be mentally competent.
Rodney Syme: You need to establish that they are rational, that they are capable of making decisions, that they have carefully considered that decision, that they do in fact have circumstances which align with the concept of intolerable and irreversible suffering, that all of these things are given due consideration, and if all of those criteria are met, then you have to check those against a standard, and that is another doctor who is convinced of the same phenomena. And if either doctor considers that this person is actually depressed and it is affecting their thinking, then they should engage with a psychiatrist. And they could say, “Well, you will need to have treatment of this depression before we can make a decision”.
Andrew Denton: Rodney is well aware that the most common concern raised about such laws is that vulnerable people, such as the elderly and the disabled, may feel coerced into seeking an end to their lives. But, in his experience, people like this are easily detected.
Rodney Syme: You know, as an experienced medical practitioner I am talking to people all the time. I am exploring all the facets of their complaints, and it’s the easiest thing in the world to determine after 10 or 15 minutes of conversation what are the reasons that you are asking me for assistance and to suss out if there is an ambivalence or that somebody else is behind there giving a little push. And besides which, think about this: do you think I could persuade you to end your life if you didn’t think that was a good idea? People cling to life.
Andrew Denton: For Rodney though, the ultimate safeguard, one that has been dramatically effective overseas, is that the decision about whether or not to end your suffering is entirely up to you. This is medication, in the form of a drink, that you, and only you, can choose to take.
Rodney Syme: I think the provision of oral medication is by far the most effective thing to do, because the actual provision of the medication gives the person control. If you're giving lethal injections, the doctor has control. I think that's the wrong way around. If you give a person control, they may or may not use it. That's their decision, and they will not use it unless they are absolutely convinced that they cannot go on any further.
Andrew Denton: The law that Rodney advocates is called Voluntary Assisted Dying. It says what it means. It’s Voluntary. It is assisted by a doctor supplying medication. And it is dying. These words have been carefully chosen because, in this argument, words are bullets.
Catherine Foster: You cannot just put a nice word in front of an unpleasant one and change the meaning. What about assisted suicide, aid in dying, death with dignity — call it what you will, it is at its core an attempt to sugar-coat death and particularly suicide.
Andrew Denton: That’s US litigation attorney and anti-euthanasia campaigner Catherine Foster. She knows that a word like “suicide” carries a historically dark meaning. She, and others who oppose these laws, try to harness that darkness wherever they can. It is a tactic that rankles.
Rodney Syme: I get so annoyed when the word suicide is used in relation to somebody who has got unbearable suffering, terminal illness, wants to end their life not because they want to end their life but because they want to end their suffering. To me this is a totally different circumstance to what we usually see as suicide.
Jon Faine: You may have heard Steve from Point Lonsdale calling in last week. He called in on talkback, and told us a most remarkable tale. The tale continues…
Andrew Denton: A week after his call to Melbourne radio, a dying Steve Guest was invited into the studio. He told listeners that he had been helped in a way that had fundamentally changed the last days of his life.
Steve Guest: But I can tell you now that that anxiety that I referred to that derives from this uncertainty and that fear has now gone. Offers have been made to me. It has included, ah, offers of help with obtaining the drug that I believe I should be able to obtain under prescription from my general practitioner. It's now available to me basically at call. So that's one thing – that anxiety has gone.
Andrew Denton: Steve died eight days later, in the company of his two brothers, using the medication Rodney supplied him.
Andrew Denton: Rodney continues to demand a response from the law, admitting on national television in 2015 that he had given medication to help Steve Guest die.
Tony Jones, [Q&A]: Can I just put it to you like this – are you actually trying to provoke the police to prosecute you?
Rodney Syme: Yes, indeed.
Tony Jones : So you can actually have a test case?
Rodney Syme: Yes, indeed, because I would argue that I can produce and provide a person with medication which provides them with palliation, relieves the psychological and existential suffering which they have when they are facing a dreadful death and I believe that is a palliative act.
Andrew Denton: It is a rare man who risks his liberty on a point of principle. And if a court case were to happen?
Rodney Syme: I think I will win. I think I will win – A, because I have got a sound argument that what I have done, my intention is to relieve suffering. Secondly, I would be judged by my peers – I think they would support what I have done with Steve Guest, that I would not be found guilty. But even if they don't prosecute me, the fact that I am not being prosecuted, having broken what everybody would see was the interpretation of the law, and I am not prosecuted, what does it say about the law? The law is a bloody ass. I
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
Andrew Denton: If you’d like to hear how things turned out for Albert and Sandra head to the episode page at wheelercentre.com/betteroffdead.
In the next episode, we hear the extraordinary story of Tasmanian woman Cathy Pryor – who was sent to jail for the mercy killings of her grievously ill parents. And we look at the human cost to a country where there is no law for assisted dying – but where people are being assisted to die anyway.
Rodney Syme : On a very deep emotional level to me helping people come to a peaceful end is very rewarding as a physician, and sharing in their death is a very profound, deep experience, and you never forget it. You never forget it.
Episode 4 - It can never be perfect, so why try and improve it?
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Cathy Pryor: Well I went home and got rid of the syringes and the all rest of it and came back and he was still alive, I mean deeply unconscious but he was alive. So I put a plastic bag over his head and tied the bag around his head, and the noise was awful, because the breathing, the bag was going in and out of his mouth. And finally I put a pillow over his head until he died.
Andrew Denton: In the space of six months, Tasmanian nurse Cathy Pryor assisted both her grievously ill parents to die. She was charged with, and found guilty of, attempted murder and assisting a suicide. Cathy went to jail until a judge decided that both were clearly acts of compassion and allowed her to walk free.
The record shows Cathy is a convicted criminal. But should she ever have faced trial? What happens in a society where there is no law for assisted dying but people are being assisted to die anyway?
Andrew Denton: You’re listening to Better Off Dead. My name is Andrew Denton. I live in Sydney, Australia, and I want to find out why, in my country, good people are being forced to die bad deaths.
Here’s what our former Prime Minister, Tony Abbott, had to say when he argued against assisted dying laws on the grounds that it’s best just to leave things as they are.
Tony Abbott: We all know that, every year, thousands of people die surrounded by their families while doctors do their best to ease their pain. Sometimes, I suspect, pain relief hastens death and, for all we know, in some cases there may even be a private understanding between the doctor and the patient not to prolong things when the end is near. These are matters that should be left to the good judgement and common sense of individuals, their families, and the people who want the best for them. Let’s not try to improve a situation that can never be perfect.
Andrew Denton: Let’s not try to improve a situation that can never be perfect? Hmmm… That would mean – everything, yes?
People who oppose assisted dying want to leave things as they are because of the bad things they claim might happen if we did have a law. But what about the bad things that actually are happening because we don’t have one?
John Coldrey : I was very taken by Perry Mason but also his gorgeous secretary, Della Street, jangled a few juvenile hormones. I was very impressed by the way he never lost a case.
Andrew Denton: Meet Justice John Coldrey, retired. His two great passions are the law and the Essendon football club. Alongside those passions, sits a fair streak of compassion. In 2003, Victorian newspapers reported Justice Coldrey’s voice breaking as he handed down an 18-month suspended sentence to 56-year-old Alex Maxwell.
Andrew Denton: What is your recollection of the Maxwell case?
John Coldrey : He felt obliged to honour that bargain and using a book describing a method of terminating life, he helped her to die. It was done to honour the promise that he'd made to her and just to ease her suffering.
Andrew Denton: Maxwell’s wife, Margaret, had inoperable cancer. Alex had promised her that, when the pain got too much, he would help her to die. In their caravan on a block of land outside Melbourne, Alex kept his word. He helped Margaret asphyxiate herself using a plastic bag. He was charged with assisting a suicide.
Andrew Denton: I have read your judgement and there is that one quote that stayed with me, when he said, ‘Her last wish was to lie in nice clean sheets in a nice clean bed and cuddle up under the doona’. It must be hard not to be struck by the poignancy of that.
John Coldrey : Oh yes, I was quite emotional in sentencing him. I mean he was just a thoroughly decent human being. These are very challenging cases, and you wouldn't be human if you weren’t vastly moved by the situation.
Andrew Denton: A suspended sentence meant that, while a conviction was recorded, there was no further punishment for Alex.
John Coldrey : It gives lip service and gives some kind of recognition of the importance of human life. So you send out that message but you say, “OK that’s the message,” but in this case and in similar cases retribution – general deterrence really has no weight. These are unique cases, and the law doesn't need to imprison people.
Andrew Denton: This was not the first time John Coldrey had been faced with a crime of compassion and let the accused walk free. The media like to call them ‘mercy killings’. Looking through the files I found dozens of similar cases from around Australia over the last 30 years. For Coldrey, 6 years Victoria’s Director Of Public Prosecutions, they represent a law that should be reconsidered.
John Coldrey : I would like to see a regime where people who act in this way are not put at risk of criminal charges. It's really as simple as that. You act in this way in an intolerable situation. Often for these people they find themselves often initially charged with murder and put in the dock, and really I don't think that society needs or requires that.
Andrew Denton: It is illegal in Australia to aid or abet a suicide, no matter the circumstances. This is, rightly, so that people aren’t encouraged to take their own life when they are deeply vulnerable or for someone else’s personal gain. But it doesn’t take into account people like Alex Maxwell who was carrying out his wife’s last wish – to help her die – because the pain of her cancer was unbearable and there was no legal way to help her.
John Coldrey : These cases don't sit comfortably in a court setting because the person still goes out into the community labelled a murderer, and all they have done – their motive has been compassion and love.
Andrew Denton: A scar added to a scar. What does that feel like?
Cathy Pryor: I’m still angry. I probably didn’t realise until today how angry I am. I mean, it has faded. I’ve got on with my life, but at the same time I still have a conviction for attempted murder. There are a lot of jobs I cannot get.
Andrew Denton: Cathy Pryor was a nurse in her early forties in Tasmania, facing the twin calamities of a father dying of cancer and a mother with severe dementia. Her father, Peter, a doctor, had always been up-front about how he wanted to die.
Cathy Pryor: He had always said that he’d stored up something for when the time came, and that was OK.
Andrew Denton: One morning Cathy got a phone call from the private hospital where Peter was in care. He was unconscious and they couldn’t rouse him.
Cathy Pryor: I went round and finally when he did come round and regained consciousness he admitted what he had done. He had taken all his barbiturates. Unfortunately it did not kill him. And he was furious. He was very upset that it did not kill him.
Andrew Denton: Trapped in palliative care, Peter realised he had lost his escape plan.
Cathy Pryor: I used to go visit him every day, and he was really getting pretty distressed and I said, ‘Look Dad, do you really want to go that much?’ He said yes. He had some heart medication at home, and I said, “Look, do you want me to bring it in?” He said yes, so I did. Well it was a pretty horrible night, and the phone went the next morning and it was Dad on the phone, going, “It didn’t work. My pulse got down to next to nothing. I did not die”. It was like, “Oh no!”
Andrew Denton: Was he depressed; was he angry?
Cathy Pryor: [Sighs] I think he was depressed. I mean it must take a lot to say, “This is it, I’m going to go,” but he was adamant.
Andrew Denton: In his dying weeks, Peter became desperate.
Cathy Pryor: He started talking about trying to either drown himself in the bath or to try and wrap the bell cord around his neck, because by this stage his legs were swelling but he also had terminal hiccups, which is where you just hiccup for hours and hours on end, and it is just exhausting. It was horrible, because the other thing he was having was a thing called bronchial spasms, where your throat constricts and you cannot breathe and you choke. There is nothing they can do about that either. I went in one day and he said, “I so want to go. I just want to go”. He knew his death was going to be horrible. So I said, “Look, Dad, if you really want to go that badly, I’ll take you home and I will help you”.
We went home to his house, and we walked around the garden. He was so calm. We looked at all of his fruit trees and he told me how to prune the fruit trees to make sure people ate the apples and what to do with raspberries. It was quite surreal and finally he said, “No, I’ve had enough. Let’s go and have a glass of wine”. So we had a glass of wine, and I said, “Dad, do you really want to do this?” And he said, “‘I am so happy. This is wonderful. I am going”. He said, “You are so brave to help me do this”. And I just said, “Look, hopefully when my time comes, someone will help me”.
We had insulin, morphine, pethidine, and he showed me the vein. He injected some of it himself, and then I injected him, and I sat with him until he lost consciousness. And one thing he had said before he died was, “Don’t let me survive. Whatever you do, do not let me survive”.
Andrew Denton: To make it appear as though Peter had suicided, Cathy went home, then came back, expecting to find him dead.
Cathy Pryor: I got rid of the syringes and the all rest of it and came back and he was still alive, I mean deeply unconscious but he was alive. I just presumed that we’d give Dad all these drugs and he would die. And because he said, “Do not let me survive,” I put a plastic bag over his head and tied the bag around his head, and the noise was awful, because the breathing, the bag was going in and out of his mouth and finally I put a pillow over his head until he died.
I was so naïve, I just did not think of the consequences. All I saw was Dad suffering and for him to not have to endure a terrible death.
Andrew Denton: Distressed, Cathy rang the palliative care unit.
Cathy Pryor: I said, “Look, I’ve come back and he’s dead; he has committed suicide”. Next thing I knew the place was full of police, fingerprinting people, detectives, the doctor from the hospice, a nurse. I rang Malcolm and my brother, who came, and I admitted to them what I had done and they said, “Look, I think you should tell the truth,” so I did. And I was arrested for assisting a suicide.
Andrew Denton: Having just done the unthinkable as an act of compassion for her father, Cathy found herself in a jail cell.
Cathy Pryor: I was in shock. I’d just lost my dad, and I was in this police cell. ..
Andrew Denton: She was charged, then released, awaiting trial. And that’s when things got complicated. A few days later the police knocked again.
Cathy Pryor: Suddenly the detectives were back on my doorstep saying, “We want to talk to you”. I thought, “Oh, they’re just here about Dad”. I said, “Come in,” and I offered them a cup of tea, and they said, “No, we are here to arrest you for the attempted murder of your mother”.
Andrew Denton: Cathy and her mum, Anne, were close. Anne had watched her own mum die a lingering death after having a stroke. She had begged for help to die but there was no help to be had. This affected Anne deeply.
Cathy Pryor: Mum said, “Don’t ever let me be like that, don’t ever … If I end up demented, please don’t put me in one of those nursing homes”.
Andrew Denton: Anne’s fears came to pass. She fell ill with dementia and it was not the gentle kind.
Cathy Pryor: She was agitated and distressed; it was horrible. She was always pacing, she would cry and yell. You could not do anything to calm her down, and it was just so difficult to watch.
Andrew Denton: Her father, still six months from death, was visiting his brother overseas. Unable to care for her mother, Cathy put her in respite care.
Cathy Pryor: I would go and visit her and she’d be there trying to pull her hair out. She was violent. Because she was incontinent so they’d have to sedate her to change her. You could not leave her on her own. She would try to find the door and get out. It was awful. It was awful. And I adored my mum, so seeing her like that was just — it was just like, Oh my God! I cannot do this to her. I just can’t.
Andrew Denton: In desperation Cathy went to a doctor who was a friend of the family, for advice.
Cathy Pryor: And I basically said to her, “I’ve never been here, we’ve never had this conversation; I will never mention who you are or what you’ve said. What’s the best way to go?” She said insulin. So I had some insulin…
Andrew Denton: You had access to this because you were a nurse?
Cathy Pryor: Yes, and so I decided to end my mum’s life.
That night I let Mum have a few glasses of wine. She went to bed. I waited until she was asleep and I injected her. Unfortunately she didn’t die. She was deeply unconscious.
Andrew Denton: Panicked, Cathy rang the family doctor.
Cathy Pryor: She was just horrified. She rang some colleagues. They said, “Get your mum to the hospital. We will not treat her; we will let her go”.
Andrew Denton: It’s such an extraordinary situation. And there is no anchor here, is there?
Cathy Pryor: No. I just thought Mum would go and, this is my being naïve again, I thought I would say, “Oh, I found Mum dead,” and that would be the end of it. Like how stupid was I, you know? But unfortunately when you’re faced with this, you don’t think. All I could see was relieving my mum’s distress.
So then I went to the hospital, and my brothers both came to the hospital.
Andrew Denton: Did you tell them what happened?
Cathy Pryor: I did.
Andrew Denton: What did they say?
Cathy Pryor: They understood. My brother did not want Mum to go to a nursing home either. I spoke to the doctor and she said, “Look, I understand why you’ve done what you’ve done. I cannot condone it. Look, you could get into so much trouble for this, but I understand”.
Andrew Denton: Like her mother before her, Anne lingered for months. For Cathy, it was torture.
Cathy Pryor: I was so angry that I let her end her life like that. It was so hard and then finally [crying]… The day that she died they rang me and said, “Look, we think your mum hasn’t got long to go,” so I went in and sat with her for many, many hours and I just cried the whole time [crying]. I was glad she was gone because the end was awful. It wasn’t Mum, and it wasn’t fair. So, that happened.
Andrew Denton: Would you like a break for a minute?
Cathy Pryor: Yes, I would, thank you.
Andrew Denton: When she recovered Cathy explained that, while investigating Peter’s death, police had spoken to the family GP who’d given Cathy advice about the insulin. She told them of Cathy’s panicked phone call six months earlier describing the botched attempt to end her mother’s life.
Cathy was charged with attempted murder and all hell broke loose.
[NEWS BROADCAST DESCRIBING CATHY’S CASE]
Andrew Denton: Suddenly she was on the front page of the local paper and on TV as the daughter who had killed one parent and tried to kill the other. She had to resign her job as a nurse and take work picking fruit. Nearly two years later, Cathy came to trial.
Cathy Pryor: The jury wouldn’t look at me when they came in, and I thought, “OK”; they just wouldn’t look at me. They found me guilty. So then I got taken back to the cells. You get strip-searched. You get put in prison clothes. You then get taken in a police van in handcuffs down to Hobart to the maximum security at Risdon. I was terrified, absolutely terrified, thinking, “Oh my God, I’m going to jail. Am I going to get raped? Am I going to get beaten up?”
Andrew Denton: Cathy spent 11 days in maximum security while the judge considered his sentence.
Cathy Pryor: The day that they took me back to court for sentencing I was waiting down in the cells. My lawyer came to see me and said, “Look, I don’t think it’s gone well. I think you’re going to get at least 18 months up to 10 years”. I was just devastated. I just thought, “Oh no!”
Andrew Denton: But the judge, instead, met mercy with mercy. Cathy’s sentence was suspended.
Cathy Pryor: When he finally said, “You’re free to go,” I just sat there. It wasn’t till someone came up to me and said, “Cathy you can go,” and it was like, what? I was just in shock.
Andrew Denton: Tell me why you think he did not put you back in jail.
Cathy Pryor: I felt he really believed I acted with compassion and in total love of my parents in why I did what I did. He also, I think, felt that the community as a whole did not want me to go to jail. I think people want an answer. And I think it needs to be addressed. And for being loving and compassionate, I don’t think you should be punished.
Andrew Denton: Over the 8 months I’ve been making this podcast I’ve spent time with people who are desperately ill and looking for help to die. Because they are forced to look outside the law for a solution, every one of them lives in fear of what might happen to their families if the police get involved.
The uncertainty this creates for those trying to help them is agonising. Imagine caring for someone who is dying, and who is begging for your help, but being afraid to do so because you don’t know what might happen to you.
Coral Levett, a nurse, knows exactly how that feels.
Coral Levett: I would go the pan room and cry for 10 minutes because I didn’t know what to do or say. I knew I couldn’t do it. There was nothing I could do about it. Saying that to a patient who is begging you to die doesn’t help. It doesn’t change their view to tell them that it’s against the law and that there is nothing you can do. They don’t see anything other than their own distress and their own suffering. Sometimes you just had to sit there and hold the hand of the person dying so that they could squeeze it and ease their own pain.
Andrew Denton: More and more scars, right across Australia. A man who’s familiar with them is Melbourne doctor Rodney Syme. If you’ve just joined us, you can hear his full story in episode 3. Rodney knows only too well the chilling effect the absence of an assisted dying law has had on doctors’ good intentions.
Rodney Syme: The fear that somebody would make a complaint inhibits people. I'm sure it's a great inhibition in palliative care, where there are all sorts of people watching. That's why they all go so slowly about the process of aiding death. It's incredibly prevalent I think in nursing homes. It’s very, very hard for people in nursing homes who are near the end of life; they're just waiting to die. They very, very often have a lot of pain, but it is notoriously ill treated because of fear of being seen to have caused somebody's death by too much medication.
Andrew Denton: For over a decade now Rodney has been challenging the law by openly assisting people to die. He estimates the number of people he’s helped at over 100.
Rodney Syme: What I have done is to help people to end their own lives. I've not ended anybody's life.
For many, many years I thought, “Yes, I'm breaking the law; this is very dangerous”.
Andrew Denton: But, even though under the Crimes Act it is a serious criminal offence to aid and abet suicide, Rodney is yet to be charged.
Rodney Syme: I was interviewed by the police on up to nine occasions and they were sympathetic and apologetic and just going through the motions, so I gradually formed the opinion that really the authorities were just trying to evade this issue.
Andrew Denton: A law that no-one wants to enforce? What does a judge make of that?
John Coldrey: The fact that those sorts of actions can be taken and that there is no official response suggests this law is not working, and if it is regarded as unjust, inappropriate, pointless to enforce it, then let's change it.
Andrew Denton: So it would be fair to say it is out of step with community needs today?
John Coldrey: Well, it is hard for me to judge that.
Andrew Denton: You're a judge. You've got to judge!
John Coldrey: That’s right! [Laughing] I have been out of it for eight years. But I would suspect that the majority of the community would be sympathetically disposed to some kind of regime that allowed people suffering intolerable pain and incurably ill to be assisted to die.
Andrew Denton: Professor Margaret Otlowski, Dean of Law at Tasmania Uni, thinks the lack of response to Rodney Syme’s challenge underlines a deeper problem.
Margaret Otlowski: He's clearly wanting to provoke a reaction because he's so committed to having law reform, and he's really putting himself forward as a sacrificial sort of lamb to say, “Look, investigate me, I'm admitting this. Either prosecute me or change the law”. I mean I don't think it's really appropriate that society and legal authorities stand by and turn a blind eye to this. It really undermines the authority of the law.
Tony Abbott: For all we know, in some cases there may even be a private understanding between the doctor and the patient not to prolong things when the end is near and I say good on people for being so sensible about these very delicate situations.
Andrew Denton: When Tony Abbott argues, as many do, that a private understanding between doctors and patients about assisted dying is better than a law, what he’s really saying to patients – to us – is, when it comes to the one medical catastrophe we all know we’re going to face – our deaths – “good luck in finding the help you might need!”
As Marshall Perron, former Chief Minister of The Northern Territory and architect of the first law anywhere in the world to legalise assisted dying, points out, this leaves us wide open to abuse.
Marshall Perron: Today in Australia a doctor can assist a patient to die with no witnesses, no second opinions, no cooling off periods or whatever, so if you want to have a conspiracy with your doctor to put someone away, now is the time to do it, not when you've got a regime that requires two doctors, independent of each other, psychiatric reports and witnesses to the whole event and the whole thing done over a period of time with a specific procedure, all ending in reports to the Coroner and so on.
Andrew Denton: Surveys show that Australian doctors have been helping people to die for many years. Do we know that all of these assisted deaths were above board? That they were what the patient wanted? That no-one stood to make personal gain from them? No we don’t. We don’t know anything much about them because, unlike countries where laws for euthanasia and assisted dying do exist, there is no system here to tell us – and no clear rules for doctors to follow.
Margaret Otlowski: I think for me perhaps that's the most troubling part – in an environment where you can't rely on an open dialogue there is a greater risk, that doctors may tend to make decisions on behalf of patients, so in other words provide assistance in the absence of an explicit request and it seems that the incidence of that is greater in a country such as Australia where ostensibly euthanasia is prohibited than in countries where it is legalised, such as the Netherlands.
Andrew Denton: Fancy playing Doctor Lotto at the end of your life? Neither do I.
Tony Abbott: These are matters that should be left to the good judgement and common sense of individuals, their families, and the people who want the best for them.
Andrew Denton: Tony Abbott speaks for many politicians in Australia when he says that, with assisted dying, we should just keep things as they are – under the radar and off the books.
Let’s not try to improve a situation that can never be perfect...
But here’s another thought: Let’s admit that this situation – for doctors, the police, judges, families and, most especially, the dying – is so far from perfect that it demands improvement.
That a decent society doesn’t turn away from other people’s pain.
Andrew Denton: If you’d like to learn more, head to the episode page at wheelercentre.com/betteroffdead .
Next episode we’re going to find out what it’s like to live in a society where there is a law to help people die. The Netherlands is home to Europe’s longest-running euthanasia legislation. Often we are warned of the dark culture of killing that this has given rise to. But if the laws are that bad, why is public support for them running at over 80%? Perhaps there’s more to them than we’ve been told. Next episode the Dutch get their say.
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
Cathy Pryor: Look, if I could have my parents back at this table now I could look them both in the eye and I’m sure they would say thank you. I don’t have any regrets. I just regret that it was not allowed to happen in a legal way.
Episode 5 - The keys to life and death in someone else’s hands
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Alex Schadenberg : I'm not safe now when you have some doctor who actually thinks it's all wonderful, it's all good. It has become that human right. He has got that right to die. Isn't that wonderful? No, we have people who are going through terrible conditions. Yes, we all agree. How do we treat them? How do we deal with them? Do we care for them or do we abandon them to a lethal injection? And I say abandon them. That's what's going on.
Andrew Denton: The Netherlands is home to the world’s longest-running euthanasia laws. Or, if you’re a critic, home to a system of legalised killing that is running out of control. In Australia, we hear lots of dark things about the ‘culture of death’ that’s been created there. But we seldom hear from the people who work in the system to find out what they do – or from the people who use it, to find out why they support it in such vast numbers. Perhaps it’s time we did.
Andrew Denton: You’re listening to Better Off Dead. My name is Andrew Denton, and I’m hoping to find out why, in my country, good people are being forced to die bad deaths.
Theo Boer: Just like many of you, I consider the active termination of a human life to be intrinsically problematic.
Andrew Denton: This is Professor Theo Boer from the Netherlands, one of the star turns at the international anti-euthanasia symposium I attended in Adelaide earlier this year.
Theo Boer: What was once considered a last resort now becomes a default way to die for an increasing number of people.
Andrew Denton: Boer is a critic of the system. But not just any critic. For the last 9 years, he’s been one of the cogs in the system – a member of one of the five regional review committees that oversee all euthanasia deaths in the Netherlands.
Theo Boer: As of 2007, the number of assisted deaths has increased by 15% annually. The figures are well above the 5000 line in 2014.
Andrew Denton: Initially a supporter of the system, Theo resigned from the review committee in 2014 alarmed at what he saw as evidence of a ‘slippery slope’.
Theo Boer: My second concern is a shift in the type of patients. Whereas in the first year, hardly any patients with psychiatric illnesses or dementia appear in reports, these numbers are now sharply on the rise.
Andrew Denton: When I heard him speak at the symposium, in truth, I was a bit alarmed.
Theo Boer: One out of 25 people in the Netherlands now dies with the assistance of a doctor.
Andrew Denton: One in 25. That sounds like a lot. So I’ve come to the Netherlands to find out, first hand, how this system works – and if it’s working as it should.
Rob Jonquiere: The Netherlands is unique in the world. We have our Royal Dutch Medical Association who has been supportive from the beginning. Completely different from Australia, where the Australian Medical Association says, negatively, “Never – no legalisation”.
Andrew Denton: That’s Rob Jonquiere, Director of the Dutch right-to-die organisation, NVVE. It’s worth knowing that the conversation, here, about euthanasia goes all the way back to 1974 when a Dutch GP helped her suffering mum to die. When she was prosecuted her local community began a campaign saying “Our doctor is not a killer”. A groundswell of public support followed. The judge handed down a ‘symbolic sentence’ – effectively ‘decriminalising’ euthanasia if carried out by a doctor to end suffering – and the issue was brought into the open.
And there it has stayed. Ten years later the Royal Dutch Medical Association did something revolutionary: Recognising that doctors do end lives, they published a statement in favour of euthanasia and physician-assisted suicide.
Provoked, the Dutch Parliament began an inquiry to find out what exactly doctors were doing in end-of-life care.
Rob Jonquiere: It turned out that about 3000 times a year a doctor made a decision on the end of life. So even politicians could no longer say this is only an exceptional thing. This is something which happened 3000 times a year, and even we knew that some things are happening without request.
Andrew Denton: Faced with this reality, the Medical Association began preparing strict criteria that, if followed, would protect doctors from prosecution as they helped patients with unbearable suffering – who had requested that help – to die.
Rob Jonquiere: The Royal Dutch Medical Association has said right from the beginning as long as we know it happens – doctors do things – we better advise our members how to do it in the proper way – use the right medications, follow the right protocols.
Andrew Denton: Euthanasia became legal in the Netherlands in 2002. Under the law, physician-assisted death still is a crime, but doctors won’t be prosecuted if they follow the ‘‘criteria of due care’’.
Henk Reitsema: I would like to see the laws repealed, if I'm honest. I just don’t think that a euthanasia law, a law that legitimises active killing with lethal injection, I don't think it's a safe option. There's no way to safeguard it.
Andrew Denton: That’s Henk Reitsema, an ethicist with a focus on faith and science, who I met in Adelaide. He’s a charming guy and also one of many people who’s warned me about the ‘slippery slope’ in the Netherlands – that once you head down the path of legally helping people to die there’s no way of controlling where it goes.
But his claim, “There’s no way to safeguard it,” strikes me as odd. Isn’t the whole system built on safeguards?
Eric van Wijlick: Yes. First, the patient has to voice his request voluntarily and several times. He has to be very sure that, in a situation of unbearable hopelessness and suffering, he wants to die.
Andrew Denton: This is Eric Wijlick, a senior policy advisor at the Royal Dutch Medical Society.
Eric van Wijlick: The situation has to be unbearable and hopeless – unbearable from the perspective of the patient, and it is directly connected to the hopelessness of the suffering of the patient. Both should be convinced that there are no reasonable alternatives. Being convinced or getting convinced is really active; the patient has to show the doctor and to convince him that the suffering in this situation is really unbearable, and the doctor, based on those professional guidelines, has to be convinced that there no reasonable alternatives. So they have to convince each other. It is very active.
Andrew Denton: Presumably this is not a quick process.
Eric van Wijlick: Usually it takes a lot of time. It takes time to grow to each other, because doctors first want to alleviate suffering. They want to cure patients, and when that is not possible, they want to alleviate the suffering. At the end, when there is no realistic option, then killing a patient might be an option. It is very difficult. It is very, very difficult. So the patient really has to have strong argumentation to convince their doctor. Doctors are not willing to perform euthanasia; they will do everything to prevent death.
Marianne Hoffman: My name is Marianne Hoffman, and I'm 46. [Laughing]
Susan Hoffman: [Laughing]
Andrew Denton: [Laughing] That's a good start.
Marianne Hoffman: Well I am. And I am an entrepreneur.
Susan Hoffman: I am Susan, also a Hoffman of course, and I am a dental nurse, and I'm 49 years old.
Andrew Denton: Curious about what the system is like when it’s your family using it, I went to meet the Hoffman sisters in their semi-detached Amsterdam home.
Why did you laugh when Marianne said 46?
Susan Hoffman: Because that's...
Marianne Hoffman: Why did you do that?
Susan Hoffman: It's just the kind of humour we have.
Marianne Hoffman: [Laughing]
Andrew Denton: I had arrived expecting a sombre conversation about the death of their mother, Gret. Instead, I found two women bursting with laughter. It soon became clear where this came from.
[Laughing] So, I'll call her Gret, because that's what you call her. Tell me what kind of a woman was she?
Susan Hoffman: Well, she has a lot of humour.
Marianne Hoffman: Yes.
Susan Hoffman: She had really a lot of humour. That's what I miss. What we miss. Most.
Marianne Hoffman: The most of her.
Susan Hoffman: Yeah, yeah.
Marianne Hoffman: When she was somewhere she was 100% there with all her humour and love, and she has this perfect timing of making a remark or giving an answer. And she has the – how do you say it – the laughers on her side.
Susan Hoffman: Yes, yeah, yeah. [Laughing]
Marianne Hoffman: [Laughing]
Andrew Denton: Gret Hoffman had been treated for breast cancer 15 years before she died. When it returned in 2011 it had spread to her stomach, her bladder, her bones.
Marianne Hoffman: My mother was a very strong woman.
Susan Hoffman: Yeah.
Marianne Hoffman: She had no fear. No fear of that, no fear of life, and no fear of her illness. And she was not upset or angry about life or things what happened to her.
Susan Hoffman: No, no. That's right.
Marianne Hoffman: It was very beautiful to see that.
Susan Hoffman: Yeah.
Marianne Hoffman: Yeah, I really admired that part of my mother.
Andrew Denton: Even as the cancer got to work, Gret got on with life.
Susan Hoffman: Over three years, because for three years – I think, two and a half years – she had a reasonable life. She could cycle, she could walk, she was happy on her way – on her own way – and the last half year she really was getting down. The pain is getting more, she can't – starts to walk very badly.
Marianne Hoffman: Cycle – difficult.
Susan Hoffman: Cycle, she could not, yeah. It was difficult. She was ...
Marianne Hoffman: Tired. Always tired.
Susan Hoffman: Afhankelijk ?
Marianne Hoffman: Depending.
Susan Hoffman: Dependent on my father – my father has to be there always.
Marianne Hoffman: Yeah.
Andrew Denton: So very much the life she didn't want.
Marianne Hoffman: Oh no! No! Especially the – only the last half year.
Susan Hoffman: Exactly.
Marianne Hoffman: She didn't want to become another person than she was. She wanted to be able to do what she did during her life, and if she was not able to walk or cycle, she didn't want to have that life. It sounds perhaps simple, but if you knew my mother, you would imagine.
Susan Hoffman: Yeah, yeah.
Andrew Denton: How does that Paul Kelly song go –“Death doesn’t care just who it destroys”? For Gret, the moment to decide had come.
Marianne Hoffman: When she heard in the hospital that it was – there was no way back, so the treatment has its final point reached. She invited us to the hospital, and there we had this family conversation, and that was the moment, I think, she wanted – she said, “I want to go home,” because she loved her house.
And so that happened, we did it. And she came home, and then Dr Kimsma, her doctor, came and we discussed this with him, and he wanted to do it after the weekend, because he needed some time for himself, because he had this bond also with my mother.
Andrew Denton: So when you say you discussed it with him, you discussed your mum ending her life.
Marianne Hoffman: Yes.
Susan Hoffman: Yes.
Andrew Denton: And your mum discussed that with him as well.
Marianne Hoffman: Yes. We were together.
Susan Hoffman: I mean, she already told to him, “If my moment's come, and I don't get any better, I am just getting worse and I am not able to do the things I would like to do, then life has no meaning for me”. And he knew that.
Marianne Hoffman: He knows that, he knew that – yeah.
Susan Hoffman: Yeah.
Andrew Denton: And he had known your mum and treated her for many, many years.
Marianne Hoffman: Oh, yeah.
Susan Hoffman: Yeah, yeah.
Forty years, I think, perhaps longer.
Marianne Hoffman: Perhaps longer, yeah.
Andrew Denton: Was everyone in the family in agreement with her? Did everyone talk about it?
Marianne Hoffman: Yes.
Susan Hoffman: Absolutely.
Marianne Hoffman: Yeah, her sisters, our father.
Susan Hoffman: Yeah.
Marianne Hoffman: It was difficult for him, because he knew that he would be left alone.
Andrew Denton: To die with the help of her doctor, Gret Hoffman began the formal process that would enable her to end her life as she wished. Aside from the request to her long-time GP, under the law a second independent doctor had to be consulted. Eric Wijlick explains.
Eric van Wijlick: That is one of the due care criteria as well – that another independent physician has to check whether the due care criteria from the doctor who might perform the euthanasia are met or not. So he gives him advice – strong advice – to proceed or not. That is really a safeguard, because as a colleague you will be checked by another colleague, considering the situation of the patient and also considering whether as a doctor you have acted according to the professional standards and guidelines of palliative care.
Andrew Denton: The SCEN doctors, as they’re called, are also an important safeguard in ensuring that the request is made voluntarily, without coercion. They meet with the patient alone.
Andrew Denton: So the SCEN doctor came, is that right?
Marianne Hoffman: Yes.
Andrew Denton: And made an assessment.
Susan Hoffman: Yes, and we have to leave the room, because it was a female one. She wants to know for sure that my mother has made her own decision. That it was not the pressure from us.
Marianne Hoffman: That's the law in Holland.
Susan Hoffman: That's the law.
Marianne Hoffman: So, she needs to ask this question alone.
Susan Hoffman: And she said, “Yeah, your mother knows what she wants. She's so fed up with it”.
Marianne Hoffman: Yeah.
Susan Hoffman: Yeah.
Marianne Hoffman: Yeah. Yeah, totally, the peacefulness, the peace went over her. Really I admired her for that. And my father, our father, as well.
Susan Hoffman: So, yeah, and the funny thing. Well, that is for me, she loved her house, of course she loved her house, but the last days, you know, detachment of her stuff, of her things, of her furniture, of everything else. She couldn't care at last, she couldn't care more. She only looks outside, because she has a hospital bed near the window. She only looks outside and then she talks to us, and says jokes or something or memories, and then she looks again outside.
Marianne Hoffman: In her own mind.
Susan Hoffman: Yeah, in her own life, in her own way and own mind – of thoughts.
Marianne Hoffman: She was already saying goodbye.
Susan Hoffman: Leaving us.
Marianne Hoffman: Yeah, leaving us and the world.
Susan Hoffman: Yeah, yeah.
Andrew Denton: Gret’s request meets the Netherland’s legal ‘due care’ criteria: she’s capable of making the decision, her condition is irreversible, her suffering is intolerable, and two independent doctors have considered her request. While the support and understanding of her family is important, the law is clear: Gret’s wish to die is a private matter between her and her doctor. The request granted, Eric Wijlick explains what happens next.
Eric van Wijlick: Then the doctor who is proceeding has to contact a pharmacist, because you need the [INDISTINCT] to do it medically safely and to be sure that the patient will die. After that, the euthanasia, or the physician-assisted suicide, will be scheduled, and then it will happen. The physician who is performing, even when he is there with the medication, will ask a patient at the end, “If you're not sure, if you doubt, or if you really want to see out of it, it is not a problem. I will just go away”. So until the final stage, the doctor wants confirmation of his patient that this is really the request he wants.
Andrew Denton: There’s one more vital element in the euthanasia mix here in the Netherlands. It comes as something of a revelation, a concept I’ve never heard in the bitter, polarising debate in Australia. The doctor perceives his part in the euthanasia as an act of ‘medical friendship’.
Gerrit Kimsma: In the end I am convinced it is a good thing. But the fact that you end the life of a patient and the patient is one minute alive, and the next minute the patient is dead is a very shocking experience.
Andrew Denton: This is Gret’s doctor of 40 years, Gerrit Kimsma.
Gerrit Kimsma: And one I would not do voluntarily, but I feel that it is part of my obligations. Otherwise I would have the feeling that I would abandon my patient in the hour of need.
Andrew Denton: I think back to Canadian anti-euthanasia warrior Alex Schadenberg...
Alex Schadenberg: Do we care for them or do we abandon them to a lethal injection? And I say abandon them. That's what's going on.
Andrew Denton: What I’m hearing here strikes me as the opposite of ‘abandon’. In fact, to my surprise, I discover that Kimsma struggled to get himself emotionally ready for what he had been asked to do.
Susan Hoffman: So the doctor asked my mother, “OK, can we put it after the holidays? Can we put it…” That was...
Marianne Hoffman: Well, he wanted to postpone it.
Susan Hoffman: Yes.
Marianne Hoffman: So he can be used to the idea that my mother was going to die.
Susan Hoffman: Yeah.
Marianne Hoffman: And that's his good heart, his human heart. But my mother was...well, at this point we could talk with my mother just by looking at her, and I read in her eyes what she wanted. And I thought – I saw over the weekend it's too late, because she was really tired. She was totally ready for it.
Susan Hoffman: She also said it to Kimsma, “Oh no, Dear, please not!”
Marianne Hoffman: “No, not after the weekend”
Susan Hoffman: “Not after the weekend. No!”
Marianne Hoffman: So we arranged that it will happen this Friday at 5 o'clock, and why 5 o'clock? Because this family loves to have a drink with each other, and we started always at 5 o'clock, and then we eat together. So, 5 o'clock we thought it was a nice moment.
Susan Hoffman: Yeah, yeah.
Andrew Denton: So can you explain that moment to me, describe it to me?
Susan Hoffman: I'm not saying it wasn't easy. It's one of the most difficult things to do. Difficult but beautiful [Sniffs].
Marianne Hoffman: Beautiful.
Susan Hoffman: Yeah. It was all so peaceful. So quiet, so in harmony. And the doctor went – came at five o'clock? Yes.
Marianne Hoffman: And it was peaceful, I think. The situation was peaceful. My mother was content.
Susan Hoffman: Oh, and something I will never forget. It was half past five. …
Marianne Hoffman: Half past four.
Susan Hoffman: Half past four, and she looks at the clock, and she said, “Oh, that's funny. In a half hour I will be dead. That's funny, isn't it?”
Marianne Hoffman: Really, and it...
Susan Hoffman: And like, “OK, mum”. [Laughing]
Andrew Denton: Yeah, what do you say to that?
Marianne Hoffman: Yeah, that's funny. Well, we laughed.
Susan Hoffman: Yeah, we laughed.
Marianne Hoffman: Really.
Susan Hoffman: Yeah, and she said, “OK, take a drink. We'll drink to me”.
Marianne Hoffman: Yeah.
Susan Hoffman: “I don't want alcohol”. She only wants water, because she couldn't eat any more. She says, “I don't take alcohol, but please, you do”.
Andrew Denton: And did you take a drink?
Marianne Hoffman: Yes, we did.
Susan Hoffman: Of course.
Marianne Hoffman: Yes. Yeah, we cheered – we cheers – we cheered about her. And, well, that's the most beautiful of this whole process.
Susan Hoffman: Yeah, yeah.
Marianne Hoffman: That it would end for her.
Susan Hoffman: Yeah, as quickly as she – because she wants it also to be quick. That it be done quickly, beautiful but quickly.
Marianne Hoffman: “Please don't make a fuss of it,” she always says.
Susan Hoffman: Yeah, she really did.
Andrew Denton: And your father? What was he doing at this time?
Marianne Hoffman: He – he was on the pills.
Susan Hoffman: [Laughing]
Marianne Hoffman: That's only what I remember [Laughing].
Andrew Denton: What kind of pills?
Susan Hoffman: To calm him down only, because...
Marianne Hoffman: What kind of pills?
Susan Hoffman: Yeah.
Marianne Hoffman: Well, this is in Holland, you know?
Susan Hoffman: Not ecstasy.
Marianne Hoffman: Not ecstasy.
Andrew Denton: [Laughing]
Marianne Hoffman: And no... No, he was – it was calming.
Susan Hoffman: Yes, calming down.
Marianne Hoffman: And it's so strange, but the strength we all felt...
Susan Hoffman: Yeah.
Marianne Hoffman: Was almost touchable.
Susan Hoffman: In the room, yeah.
Marianne Hoffman: Even Kimsma told us, “I've never…”
Susan Hoffman: “I've never met this before”.
Marianne Hoffman : Experienced this.
Susan Hoffman: “Experienced this before”. It went so peaceful, so in harmony, so beautiful – nearly. He was amazed.
Marianne Hoffman: Yeah.
Susan Hoffman: He was just amazed. Yeah.
Marianne Hoffman: And still I feel this. It's strange, you know? Because I wish for everyone a perfect goodbye.
Susan Hoffman: Yeah.
Marianne Hoffman: A peaceful goodbye.
Susan Hoffman: And we – so, the moment that my mother was there, and I didn't notice at all, and then and suddenly, she said, “Oh, yeah”.
Marianne Hoffman: “I can feel it”.
Susan Hoffman: “I can feel it”. And then...
Marianne Hoffman: That was it.
Susan Hoffman: And that was it.
Marianne Hoffman: Because she fell...
Susan Hoffman: She fell to sleep.
Marianne Hoffman: She fell to sleeping.
Susan Hoffman: And sleep-like, like that because he really did his work – Kimsma.
Marianne Hoffman: The first injection.
Susan Hoffman: And it was so beautiful. She was really glad when she said it, “Oh yeah, I really feel it!”
Marianne Hoffman: “I feel it!” Yeah. Well, I watched Mamma.
Susan Hoffman: Yeah, yeah.
Marianne Hoffman: And she was looking at my father.
Susan Hoffman: Yeah, still.
Marianne Hoffman: And my father was looking at the vein situation...
Susan Hoffman: Completely on drugs [Laughing].
Marianne Hoffman: And my mother was looking at my father [Laughing]. So it was – yeah. And it only lasted minutes, but...
Susan Hoffman: It's terrible [Laughing].
Marianne Hoffman: Yeah, it's terrible, but it only lasted 5 minutes, but when I think back about it, it feels like a whole life, because it was – we had this humour and these jokes, and this pure love feeling in the house. Pure love – there was this.
Susan Hoffman: Yeah, yeah. Absolutely.
Andrew Denton: Well, you should, if you can, die as you lived. And your mum's life was full of humour and love and jokes and perhaps pills, I don't know.
Marianne Hoffman: [Laughing].
Andrew Denton: But all these things were there as they should be.
Marianne Hoffman: Yes. And I know for sure, and I can say with a hand on my heart, this is exactly how Mother wants this.
Susan Hoffman: Oh yeah, yeah.
Marianne Hoffman: And I'm sure – I don't know if you believe in life after death, or life after life; I do. And she is sitting on this wolk.
Susan Hoffman: Cloud.
Marianne Hoffman: Cloud, looking satisfied and very proud.
Andrew Denton: Listening to the Hoffman sisters it’s hard not to be struck by the civilised way in which their mother, who was facing a hard death, was given a choice about how hard it needed to be. It doesn’t seem to me that Henk’s warning...
Henk Reitsema: I don't think it's a safe option. There's no way to safeguard it.
Andrew Denton: ..stands up to close scrutiny, even less so when Eric Wijlick explains what happens after someone has been euthanased.
Eric van Wijlick : First, a doctor has to report. He has to warn the coroner. The coroner then immediately has contact with the public prosecutor just to be sure that there are no irregularities in the process. After that, the coroner will send the medical journals, the reports, the written requests from the patient, the reports from the independent physician and his own report all to the review committee, and they will judge on that whether the doctor met the due care criteria or not. If he did not meet the due care criteria, all the paperwork will be sent to the head of public prosecutions, and the minister of justice is directly involved. So every doctor tries to prevent euthanasia as much as he can, then has to act according to due care criteria. He is never alone. Also the pharmacist is involved. So you cannot do it without – there are always other professionals involved, relatives involved and nurses involved. So you have to do it really properly and report it.
Andrew Denton: So there is no way you could commit this act and not report it? You would be found out?
Eric van Wijlick : Everything is possible in life.
Andrew Denton: Yes, and people are devious at times.
Eric van Wijlick : Exactly, so we cannot exclude that. So let's be clear. But basically we know what is happening in our medical practice. Society, Parliament and even the Christian parties are really satisfied about what we are doing in announcing the system, and the results as well.
Andrew Denton: That’s interesting: And not only is there support for euthanasia across the political spectrum here, as well as from all the major medical bodies, but public support for it is at 85% – the highest in the world. Not what you would expect from a system that isn’t working.
Even the insider critic, Theo Boer, admits that the review system does its job well.
Theo Boer: The law on assisted dying has in fact led to a practice that is transparent. Review committees report a reporting rate of close to 100%. Practices that formerly took place in hiddenness are now more or less controllable. And despite the claim of some, the law has not led to a deterioration of palliative care. In fact, the quality of palliative care has considerable increased in the past decade.
Andrew Denton: He also notes an uncomfortable truth.
Theo Boer: In 14 years time, not one case has led to a prosecution.
Andrew Denton: Fourteen years. Not one. That’s quite something. I wondered how rigorous the review process is.
Gerrit Kimsma: Well, I would say it is quite rigorous. Everybody prepares the cases at home, then you meet.
Andrew Denton: Gerrit Kimsma sat on one of the committees for 12 years.
Gerrit Kimsma: There are cases that hardly warrant extensive discussion, but the few cases that raise questions you talk about quite extensively. The beginning is not that the doctor is a criminal but that a physician has gone through the steps of the law, had a consultation, was convinced that the suffering was unbearable, and you tried to find out really why – how the physician came to those conclusions and whether it was warranted or not.
Andrew Denton: But not a single prosecution in over a decade? How could that be?
Gerrit Kimsma: Well, that is an interesting question. You should ask a lawyer. Because I have sat on cases that we thought were not prudent, were not careful. They were sent to the medical inspectorate, the medical police, so to say, and they were sent to the prosecution, and the prosecution had their own idea. They said that the not careful nature was not of a nature that warranted a criminal procedure, so that is how the law looked at it. But I've seen what it does to physicians if a review committee says that a case has not been careful. That is psychologically so burdensome and the uncertainties are so large, whether there will be prosecution, that in itself is a terrible punishment, to be honest.
Andrew Denton: As chair of the review committees since their euthanasia law began, Willie Swildens has seen it all. Is she satisfied the safeguards are working?
Willie Swildens: Yes. I'm sure of it because we are very severe and doctors are not easy to say yes to a patient with euthanasia wish. Well, as you mentioned before there has not been any prosecution in all those years because the physicians are very serious, and we see that they do their job very carefully, and we do our job carefully too. So we see that the system works and that's the reason that I'm not afraid of slippery slope or how you will call it?
Andrew Denton: It all sounds solid. And yet, there is still that nagging statistic of Theo Boer’s.
Theo Boer: As of 2007, the number of assisted deaths has increased by 15% annually. The figures are well above the 5000 line in 2014. One out of 25 people in the Netherlands now dies with the assistance of a doctor.
Andrew Denton: One out of 25. That sounds like a lot. And then I think about it the other way around and realise that – wait a minute – this means that euthanasia laws don’t apply to 96% of the population. I asked Eric Wijlick what was the explanation for the rising numbers.
Andrew Denton: Theo Boer said that he thinks that any society that organises to kill its own citizens is running great risks. He talks about there being since 2007 on average a 15% increase in the number of euthanasia deaths in the Netherlands. Do you see that as underlining his point that this is a system which has perhaps become too loose?
Eric van Wijlick: No, I totally disagree because the risk for society without having a legal system or professional guidelines and safeguards is even more risk for society. My explanation for the rise – it is true, the 15% every year. It also depends on the number of people who are dying yearly in society, and that number is rising, and the number of patients who die of cancer is rising. So that explains partly why the number of reported cases are still ascending. But I think more adding to that is that doctors are more aware of how to proceed and how you might act according to due care criteria. They feel a little more sure on how to act within the framework. Also very important is that patients learn that we have a law, that they have the right to make a request – not that they have a right to euthanasia, but they have a right to make a request on euthanasia.
Andrew Denton: In fact, when you look at the official figures, not only is the number of deaths by euthanasia in the Netherlands less than 4% of all deaths –90% of those deaths are people with incurable diseases: cancer, neurological disorders, heart failure.
This hardly squares with Theo’s claim that…
Theo Boer: What was once considered a last resort now becomes a default way to die for an increasing number of people.
Andrew Denton: There’s another surprising figure too – one that Theo didn’t mention – the number of cases that are declined.
Eric van Wisjlick: What we know from research – and we have a long tradition of scientific research on this, so we know very well what is happening in practice – is that one-third of the serious requests will be granted, so two-thirds are not. In the group of two-thirds is because patients withdraw their request, the suffering is not unbearable, the suffering is not hopeless, a patient has died – all different reasons why the euthanasia is not granted at that stage.
Andrew Denton: Looked at closely, Theo’s figures appear less like evidence of a slippery slope and more like a picture of a system doing what it was designed to do: which is to help that small number of people, whose pain is beyond the reach of medical science, to die humanely.
I put Theo’s concerns to Gerrit Kimsma.
Andrew Denton: Theo says this is a criticism; however. He believes that it is a dangerous thing for this society that euthanasia is now seen as a readily available option.
Gerrit Kimsma : No, I think he is, he is – I disagree, fundamentally, because euthanasia is not an option to solve social problems. Euthanasia is an option for individuals who ask for it and who do not get it if they do not ask for it. And the fact that there are more people asking for it in itself has no moral significance other than that more people choose to have an end of life that they really want, which I think is a good thing.
Andrew Denton: A choice about the end of life you really want. That strikes me as being a very good thing. No wonder there’s such support for the idea in Australia – hands up all those who want to die a terrible, drawn out death? Didn’t think so.
And yet the Netherlands is constantly held up to us as a warning about what will happen if we get our own laws to assist people to die. “See?”we’re told, “It’s out of control. People are abandoned. You can’t safeguard it”.
From what I’ve seen here, the opposite is true.
But then – maybe – I haven’t been looking in the right places. Because there are other stories about the Netherlands: of mobile death clinics and of people being euthanased simply because they are tired of living. Of doctors becoming too used to killing, and of tinnitus being considered a good enough reason to end someone’s life.
Maybe that’s the “slippery slope” people talk about. If it is, next week I’m going to find out.
[SONG ‘FORTY-EIGHT ANGELS BY PAUL KELLY]
Marianne Hoffman: The life we live is so short, and the thing we know is we're going to die.
Susan Hoffman: Everybody does.
Marianne Hoffman: Everybody does. And this is the way our mother wanted it, and she was so peaceful with it.
Susan Hoffman: We all want – that you can choose the way you want to die. When you... understand?
Marianne Hoffman: Yes.
Susan Hoffman: Not if you're healthy, but if you are ill, and you know you're not getting better or you're going to die, then she don't want to wait, because she knows it's only getting worse.
Marianne Hoffman: Yeah, extending life for the people who love you is unnecessary.
Susan Hoffman: It's awful. It's...
Marianne Hoffman: Selfish.
Susan Hoffman: It's so selfish.
Andrew Denton: I'm smiling there, because in Australia those who oppose the thought of euthanasia always argue the opposite. They say that the people who wish to die are being selfish.
Marianne Hoffman: They are crazy.
Andrew Denton: [Laughing]
Susan Hoffman: No! You don't love somebody who is in pain, who you don't want to die. Then you don't love them. That's awful.
Marianne Hoffman: You can't speak about love.
Susan Hoffman: If you really, really love somebody, and it's close in your heart, like family or your partner or something like that, you want to help him in whatever way. And that is the way we wanted to help my mother, and we all stood behind it.
Marianne Hoffman: But I can really understand a little bit, because we people, and also in Australia, you have two types of living – in love or in fear. And I think people who say this is selfish to end your life, they live in fear.
Susan Hoffman: Yeah.
Episode 6 - Once you start killing you can’t stop: Netherlands part II
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Mariska Koster: I still see it. I can recall everything that happened as if it happened yesterday. I was standing in the corridor and I was shaking and sobbing, and the nurse took me away, gave me tea and sympathy and everything, and I was so grateful. That she supported me meant so very much.
Andrew Denton: This is Mariska Koster of the Netherlands, describing her memories of being involved in a euthanasia death six years ago. Mariska is not a family member recalling the passing of a loved one. She is the doctor who performed the euthanasia.
Mariska Koster: It goes beyond everything. You are treading into life and death, and you are trained to always stay on the side of life; death is a no-go area.
Andrew Denton: Doctors in the Netherlands have been treading in the no-go area of death and euthanasia for over a decade now. Most of the cases they deal with are people who are terminally ill. But a small number are not. Could it be that they have trodden too far?
Andrew Denton: My name is Andrew Denton and you’re listening to Better Off Dead.
Theo Boer: According to Dutch law, killing another person is a crime, but under certain conditions a doctor who kills a patient will not be prosecuted.
Andrew Denton: This is ethicist Theo Boer, speaking by video link to an anti-euthanasia conference in Adelaide. Theo knows Dutch euthanasia laws well. For nine years he sat on one of their Euthanasia Review Committees – each one made up of a doctor, a lawyer, and an ethicist. Their job is to review all euthanasia cases to see that they have complied with the law.
In 2014 Theo resigned, concerned, not just about the rising numbers of euthanasia cases, but also about their nature.
Theo Boer: Whereas in the first year, hardly any patients with psychiatric illnesses or dementia appear in reports, these numbers are now sharply on the rise. Many of these patients could have lived for months, years or even decades.
Andrew Denton: Theo’s concerns didn’t stop there.
Theo Boer: Euthanasia for a man with autism who fears retirement. Assisted dying for a mother of two suffering from tinnitus. In 2012 under the End of Life Clinic, a nationwide network of travelling euthanasia teams became active.
Andrew Denton: Mobile death units. Others had warned me about these. Just as I’d been warned that in the Netherlands there were people being euthanased without their consent, and that doctors had become desensitised to the idea of killing patients.
Put together, these warnings made a single allegation: that the Netherlands is a “slippery slope” whose euthanasia laws are now bent out of all recognition.
So I’ve come to see if the warnings hold true. To find out, if you’re a doctor working here, how slippery the slope is. And if it really is a slope at all.
Steven Pleiter : My name is Steven Pleiter. I will be 60 this year, and I am the chief executive officer of the Levenseindekliniek, which is quite a unique organisation in the Netherlands.
Andrew Denton: Can I refer to it as the Life-Ending Clinics? Is that a correct...
Steven Pleiter : Yes, that is right.
Andrew Denton: Steven Pleiter is a retired physician leading a team of 80 doctors and nurses. They specialise in the very cases Theo Boer is concerned about – where a person who may not be terminally ill is helped to die.
Steven Pleiter : Well, we're open now for over three years. We see at this moment about 1100 people a year, and there is a common red line in what we see. What we do and what we specialise in is investigating complex euthanasia requests.
Andrew Denton: Those who hold out the Netherlands as a textbook case of “slippery slope” point to a law originally designed to help the terminally ill that has now “slipped” to include, for example, those with dementia. But Dutch law wasn’t written to deal only with certain diseases. Guided by doctors themselves, it was deliberately created for people whose suffering is “unbearable and untreatable”. And that can mean many things.
Gerrit Kimsma: Psychiatric cases, Alzheimer patients, elderly people with a number of serious, let's say, functional limitations as part of becoming older.
Andrew Denton: Gerrit Kimsma is a doctor of 40 years standing. He was a member of the Euthanasia Review Committees for 12 years.
Gerrit Kimsma: According to the review committees, these cases for the past years have been deemed acceptable. And now you see that concerning cancer patients, you can say it is a 90% medical professional consensus. With respect to Alzheimer patients, it may be 50-50, psychiatric cases, the same. So, the Life-Ending Clinics actually fill that gap, so to say, where physicians feel they are willing to help patients die with cancer feel they are not willing to help patients die with psychiatric diseases.
Andrew Denton: The Life-Ending Clinics came into existence because of the Dutch Right To Die Organisation, known locally as the NVVE – 160,000 members strong – bigger than any political party in the Netherlands – they are essentially the patient’s advocates, advising them about their end of life choices and arguing for their rights under the law.
What the NVVE discovered was that, despite “unbearable and untreatable suffering” being the basis of the law, some patients were being refused their legal right to euthanasia. Some doctors refused on moral grounds. Others had a different reason. Stephen Pleiter.
Stephen Pleiter: The reason that these doctors hesitate to do the investigation themselves is that these cases are rare. So, a general practitioner cannot gain the experience in doing this investigation rapidly enough, and that is why he is hesitating.
Andrew Denton: So in 2012 the Life-Ending Clinic was established, working within the Dutch euthanasia law, to deal with rare and complex cases.
Stephen Pleiter: If it applies to the law, if we really understand from each person why this is the solution that this person is looking for, then we respect the choice of that person and are willing to help that person.
Andrew Denton: Just as patients are represented by the NVVE, doctors are represented by the Royal Dutch Medical Society. What do they think of the Life-Ending Clinic? Spokesman Eric Wijlick.
Eric van Wijlick: First is that we felt very hesitant about this initiative, because they started as a clinic, where they would help patients within a certain time to grant a request. What they are doing now is completely different. They have mobile teams because we also stated that most patients wanted to die at home, so if you want to take care of patients – they feel most comfortable in their own situations – then you have to be at the place where patients stay.
Andrew Denton: So these are the “mobile death units” I’d been warned about – established, as it turns out, because most people want to die at home. Nothing sinister here. Just a compassionate and practical response to a very human need.
Nonetheless, Eric explains to me that some Dutch doctors worry that, because the Life-Ending Clinic has only one purpose – to grant a patient euthanasia – they don’t establish a proper doctor-patient relationship. I put this to Stephen Pleiter.
Andrew Denton: I think the major criticism that I have come across is that this place is a one-stop shop, that all it sells is euthanasia. Do you understand that discomfort?
Stephen Pleiter : Yes, I understand, and I disagree, if you don't mind. Yes, we are a one-type-solution shop, if that is the situation. But it's like the dentist or the eye doctor or – there are many specialists in the world that are focused on one type of area or one type of solution. So what we do and what we specialise in is investigating complex euthanasia requests that are not being helped by other doctors.
We know we are being looked at as an organisation that works on the edges of the legislation in the Netherlands – by the way, we are not searching these edges, but the patients coming to the Levenseindekliniek bring us at the edges – OK, that is a fact. So, we need to be careful.
Andrew Denton: Indeed they are being looked at. One of the hallmarks of the Dutch euthanasia laws is how carefully they are scrutinised and how openly they are discussed. Gerrit Kimsma, for example, also expresses concerns that the nature of the Life-Ending Clinic may mean that the basic doctor-patient relationship is missing.
Gerrit Kimsma: They start with a request to be helped to die of a patient they have never met before. I find it problematic. That is not the doctor-patient relationship that originally accompanied the whole institutionalisation of euthanasia in the Netherlands. So, it is, I would say, it is the next step that I see some validity for because there are incorrectly refused euthanasia cases. But it worries me also, because it misses a basic element that I believe should be there.
Andrew Denton: What is interesting about Kimsma’s critique is that he is also a consultant to the Life-Ending Clinic. In airing his concerns, he underlines the strength of the system. Rather than being ‘slippery’, or devious, as some would imply, this kind of open conversation is exactly what you would hope for when dealing with such complex medical issues. In that same spirit, Stephen Pleiter responds.
Stephen Pleiter: We would say yes it would be better if the general practitioner would be doing this but since there are a number of general practitioners that are not willing to help a patient, we think the demand of the patient is that serious and that strong, then they should be helped. Instead of having a typical doctor-patient relation, we are having what I would call a trust relation. So if we come to a patient, we don't take our time to drink a cup of coffee or have a social talk. It goes on to the subject immediately. And a good relation, where trust is there, is established very rapidly. The contacts that our teams have are long-lasting; it is very common that we sit with the patient for one and a half to two hours – many times. It is a different type of relation. And I am absolutely confident that it is a good way of doing these investigations.
Andrew Denton: In 2014, the Life-Ending Clinic helped 231 people to die: Only a tiny proportion of the close to five thousand Dutch euthanasia deaths in that year, the total number of which is less than 4% of all the people who die in the Netherlands annually.
Still, even seen through this prism, the point is the nature – not the number – of cases.
Andrew Denton: You are dealing with cases which, by their very nature, are difficult sometimes to clearly define. They are, if you like, at the edge of the knowledge of medical science. With psychiatric illnesses, how do you assess untreatable suffering?
Stephen Pleiter : Well, the investigation first of all, takes more time but then the psychiatric patients that end up, and that we are willing to perform euthanasia on, those patients have been in psychiatric clinics, etcetera for many, many, many, many years, most of the time, for decades. They've had treatments, a lot of them, and only after a long-lasting wish to die and many, many treatments, we are willing to say OK, there is no treatment that makes any sense anymore, even though in psychiatry, always, there is another treatment, but at a certain point you can say it does not make sense. Like someone [with] cancer, some of the time you cannot do anything anymore. That occurs to psychiatric patients also. So that is the situation that we help them.
Andrew Denton: Psychiatric euthanasias are a very complicated issue and we will return to them in detail in when we look at what’s happening in Belgium. But what of the equally challenging question of patients with Alzheimer’s or dementia? If the basis of your law is that only a mentally competent adult can request euthanasia, how does that apply to patients like these?
Here, there is a tension between what Dutch law allows – and how that law is carried out in practice. Eric Wijlick from the Royal Dutch Medical Society.
Eric van Wijlick: The bill was discussed in Parliament and it says it really clearly that although law article part 2 states that a written request replaces the oral request, history shows also that you have to discuss this with your physician as well, because otherwise a physician cannot be really convinced that the request was done by a competent patient. How can you know? So it is not directly put in the law, but we learnt from analysing again that you really have to have an oral request because if a request was done 10 years ago, how do you know that the patient really does want this situation still?
That is what we think also from an ethical point of view. That is, most of our doctors say, “I cannot kill a patient if I never discussed all these kinds of topics”.
Andrew Denton: If the law says that it’s possible for a patient to be euthanased based on a written directive, how does the Life-Ending Clinic deal with that? Stephen Pleiter.
A number of doctors we’ve spoken to are uncomfortable with the idea that Alzheimer's patients be euthanased. And their main concern is how is it possible to show due care, which is that key criteria, to people who may not be mentally competent or even capable of communicating at the time of their death? How do you address that problem?
Stephen Pleiter: So, let me be absolutely clear in that – the Levenseindekliniek has not given any patient euthanasia that was not able to express their will. So, dementia, or Alzheimer, is a disease that takes quite some time before it is in the situation that you don't know where you are, you don’t know who you are, you don't know your relatives anymore. So the people that really think about this and don't want to get into that situation need to come to us early and ask for help in an early stage. So these people are compos mentis, so they know what they are asking. It's like Cinderella – you need to leave the party before midnight.
Andrew Denton: If you have Alzheimer’s or dementia, how is it possible to know – to really know – that you are at 5 minutes to midnight?
Meet Barbara Heetman, whose mother, Jeanne, did choose to “leave the party early”.
Barbara Heetman: My mother was an enjoying person, so if there was something – music or the grandchildren...
Andrew Denton: Jeanne Heetman had lived with Alzheimer’s for seven years. There was laughter and joy in her life still, but she told her three daughters she didn’t want to ever reach the point of not recognising her family.
Barbara Heetman: She knew with Alzheimer’s you will turn out to be a totally different person. But she said, “No. I don’t want to be another person. I had a good life”. I mean, she was 80, and she thought there will not be more new nice things or whatever, and it will only get worse.
Andrew Denton: Is it possible that your mother felt like she might be a burden to you and your sister?
Barbara Heetman: As a burden? No, no. I said, “You can live and sit and we will still come”.
Andrew Denton: So Jeanne Heetman went to see her local GP.
Barbara Heetman: She said, “Hello, I’m Jeanne Heetman. I have Alzheimer’s, and if it is getting worse, I would like to die”. And then the doctor said, “I cannot do that. I never did that and I do not want to do it. I don’t have experience with that”.
Andrew Denton: At her GP’s suggestion, Jeanne contacted the Life-Ending Clinic. Before they would meet with her, as Stephen Pleiter explains, she had to fill in a detailed application form.
Stephen Pleiter: It asks why the person wants to have help with euthanasia since that request is quite serious. So it is a long application form that they fill in. When we receive it the first thing that we do is that one of our doctors gives a call to the general practitioner of the patient in order to ask whether they know the request of the patient, what their own position with regards to the request is.
Also we ask the doctor for information from the medical files of the patient. That helps us to do a pre-investigation, which is a first step in helping us decide whether we need to send in a team or whether we need to have a psychiatrist at first to have an interview with the patient or whether we already can say, “This doesn't make sense, this will not apply for euthanasia, so we don't need to spend all the effort”.
Andrew Denton: With help from Barbara, Jeanne answered every question – but one.
Barbara Heetman: But then we come to the question: “Do you want to die now?” Then she said, “No”. I said, “OK, we stop”. So we put it aside. I said, “You call me if you want it”.
Andrew Denton: A few months later, Barbara received a call from the family GP. She said Jeanne had visited her again to talk about dying before she got lost in her disease.
Barbara Heetman: Then the doctor said, “Your mother is really going backwards and now she can still say it, and that is very important with Alzheimer’s, or with euthanasia or help with dying, because you have to be totally [Speaks Dutch]”
Andrew Denton: Competent.
Barbara Heetman: Competent. Competent.
Andrew Denton: So your GP, even though she certainly would not euthanise someone with Alzheimer’s and maybe did not even approve, she nonetheless saw the need in your mother and was prepared to help out.
Barbara Heetman: Yes, because my mother was asking.
Andrew Denton: Jeanne completed her application for the Life-Ending Clinic. For three months, while the Clinic investigated, the family heard nothing. Then a doctor’s visit was arranged.
Barbara Heetman: And he would just talk with my mother, just for seeing how is the situation. He said, “OK. I think this is a real question,” because he was asking my mother and she had difficulty to find the words, but then she could… If you say, “What is dying?”, then she said, “No, I just want to die at peace” – you know, putting her hands under her face like going to sleep softly or something.
Andrew Denton: At that first meeting Jeanne spoke to the doctor for two hours.
Barbara Heetman: But we had a good feeling, and then he said, “There will be a test. Your GP has to find a psychiatrist. That person, who is not known by anybody else, will come to your house and ask you questions to know if you are depressed or not and if you are competent”. Because if you are depressed and you want to die, no. You really have to want it with your deepest will, yes?
Andrew Denton: Once Jeanne had passed the psychiatrist’s tests, the Life-Ending Clinic began examining her request more closely.
Stephen Pleiter: After that, a team will be formed, based on the case, and that team will do the investigation. And that investigation takes as many interviews as the team requires to find out whether they can feel with the patients, why this request for this patient makes sense, and whether all criteria are met – as many interviews as it takes. It is up to the decision of the team. And the team are highly trained professionals – doctors and nurses who know exactly what they’re they are doing.
Andrew Denton: So this process could take several months?
Stephen Pleiter: Absolutely. All decisions are about life and death.
Andrew Denton: A few weeks after the assessment by the psychiatrist a second meeting was arranged between Jeanne Heetman and a team from the clinic.
Barbara Heetman: We want to do everything in the whole family, so we were sitting there around. But that was not how they wanted it, because my mother was too much looking to us when she was searching for a thing: “How old am I? Hmm, 80 — eh, how old am I?” You know, so she was asking. They did not like that, so they said, “OK, we had this talk, but we will come again”. They said, “We will come next week, and then we want to talk to you alone”.
Andrew Denton: It makes sense they wanted to do that because they also needed to know that this was your mum not you or your sister...
Barbara Heetman: My mother had to say totally from her own brain, heart, whatever, “I want this”. There was the three conversations with that doctor and that nurse, and it was also recorded, by the way. That was for justice of course, for later. So that you hear my mother say what she wants.
Andrew Denton: For Barbara, the whole experience felt somehow…unreal.
Barbara Heetman: Because we were nervous for our mother that she would pass all the exams, but then on the other hand what were we waiting for? For our mother to die. And that feeling I never had in my life.
Andrew Denton: Having satisfied her GP, a psychiatrist, and the Life-Ending Clinic that she was mentally competent, Jeanne still had one more test to pass.
Barbara Heetman: But then you know that there also had to come a second opinion.
Andrew Denton: The SCEN doctors, yes?
Barbara Heetman: The SCEN doctors.
Andrew Denton: SCEN doctors are specially trained to make sure that the due care criteria of Dutch euthanasia law are upheld. Stephen Pleiter.
Stephen Pleiter: Absolutely. That's one of the criteria that needs to be met. So we don't find friendly SCEN doctors who we know and we know how they think; we just go through the front door and a SCEN doctor is being allocated to our case, and it is not the other way around.
Andrew Denton: And do SCEN doctors sometimes say that it is not appropriate to go ahead with euthanasia?
Stephen Pleiter: Yes they do or they hesitate. Sometimes, they say, ‘Not at this moment, you need to do a little bit more or you need to do quite some more’.
Andrew Denton: For Jeanne Heetman, determined to die as herself, not as the ghost of the person she was, this last test meant everything.
Barbara Heetman: So then the SCEN doctor came, and she had to do it on her own. My sister came in and my mother was writing words: “Ik wil dood”. She put it on paper, and she was practising, because she said, “I have to remember those words”.
Andrew Denton: “ Ik wil dood” is “I will die”?
Barbara Heetman: I want to die.
Andrew Denton: I want to die.
Barbara Heetman: So the persons came, and they said in the end, “I think you’re clear. You made your point clear”. So they were making it more and more realistic.
Andrew Denton: Shortly after, a call came. Jeanne had fulfilled all the due care criteria. A date was set for her to die. December 4 – only a few weeks away.
Barbara Heetman: So we hang up. “What's this all about?” my mother said. “Yeah, it's about when you can die”. “Ah!” Then she said, “Bah, it has to be more than enough. It can happen” – you know? I mean – “I'm ready for it”.
That was a relief, so she gave the answer. We were all in panic, because of course then it becomes so real when you have a date. No, but she said, “Hey, listen. I did enough saying goodbye”. Because there was also in November a kind of party. So there were all her friends and people came.
Andrew Denton: So they knew your mum was going to die?
Barbara Heetman: Yeah, and still that was strange, because in the end it was all depending on my mother. Would she say yes or no?
And at 2 December we really had what you call the last supper. Then we were all drunk and we said toasts, and you see my mother all the time with the liquor and singing a song.
Andrew Denton: And your mum was happy?
Barbara Heetman: Ja. And the moment she knew that, one week before, she was the most relaxed. When she knew that the day would come she was most relaxed, and then I felt she was becoming almost an ambassador of the self-chosen end of life.
Andrew Denton: After seven years of living with Alzheimer’s, Jeanne Heetman had decided to leave the party before midnight. Still, despite all the care taken, Barbara had the slightest thread of doubt.
Barbara Heetman: We were in the flow of my mother. She was the leader, and it was good that she could say that in the end. And, but, I also felt, “Does she really want it?”.
Andrew Denton: But Barbara’s slight doubt was dispelled the night before Jeanne was due to die, when she overheard her mother reply to a question from the clinic nurse; would Gene prefer to die by injection or by drinking the medication?
Barbara Heetman: And then … my mother said, “Oh, no, I take the drink. I did everything myself in my life, so also I will do this”. So good to hear, because then you can see, my mother she is really competent. She knows what she is doing.
Andrew Denton: Despite advancing Alzheimer’s, Jeanne Heetman had been able to persistently express her clear wish to die. But are there others in Jeanne’s position who the clinic refuses?
Stephen Pleiter: Absolutely. We have a general rule – the team needs to be 100% certain that they do the right thing. If they hesitate on that, whether they think it’s 1% doubt in there, then they will not perform euthanasia.
Andrew Denton: It must be a hard thing to say no to patients, particularly after you've been through a long consultation process.
Stephen Pleiter: Yeah, that is difficult. We know that we are a kind of last resort for these persons applying for help of the Levenseindekliniek, or the End of Life Clinic. But that doesn't mean that we should step over our edges and over our borders.
The most critical thing is that we are 100% sure that any euthanasia request has been investigated correctly, and that for this patient this is the only solution available.
Andrew Denton: This caution in assessing whether or not patients are eligible is borne out by the fact that two out of every three euthanasia requests in the Netherlands are declined.
It is clear, listening to Jeanne Heetman’s story, that the criteria of “due care”, designed by Dutch doctors and laid down in law, are taken seriously.
But Canadian anti-euthanasia campaigner Alex Schadenberg doesn’t think this is necessarily true. He goes so far as to say that some Dutch – and Belgian – doctors are criminals – and that they’re hiding their crimes.
Citing official figures of 1000 deaths recently in Belgium, and a similar number in the past by doctors in the Netherlands – deaths which, he says, occurred without the patient’s consent – Alex makes a startling accusation.
Andrew Denton: Is it your assertion that those 1000 deaths, or the majority of them, were in effect a murder because they were not deaths that anyone had consented to?
Alex Schadenberg: murders, manslaughter – it depends on how you define it in the law. Yes, they are. They're deaths that occurred – that is, the doctors admitting that they intentionally hastened those deaths.
Andrew Denton: Not only, says Alex, are Dutch doctors killing people without their consent but they are hiding this fact because these deaths are not recorded as cases of euthanasia.
When he first told me this I thought, “If this is true, it surely throws into question the entire system”. I wondered how it could it be that doctors are killing patients without their consent – and then not reporting it? Gerrit Kimsma studied the same Netherlands data quoted by Alex.
What can you tell me about the circumstances of those unrequested deaths?
Gerrit Kimsma: Yes, well the 1000 cases were from 1991, actually. In 2010 they have been lowered to less than 200.
Andrew Denton: So they do exist. But why?
Gerrit Kimsma: The majority of the cases, patients had said before that they did not want to suffer extensively. The medical situations of these cases were all very hopeless. And most interesting, I found – and I hope your Canadian knew that too – that even in Australia there were more cases of life-ending without explicit request.
Andrew Denton: Can you explain that? Why would that be happening in Australia?
Gerrit Kimsma: Well, those are the patients who are in a hopeless situation, no cure is possible, are suffering extensively, and what physicians often do is they raise the morphine level. They raise the morphine level even beyond the level of treating excruciating pain. So they hope that a quick raise of morphine will really end life by taking away the breath.
Andrew Denton: So this is something that takes place largely within palliative care?
Gerrit Kimsma: It takes place in palliative care. If you look at the level of morphine used, you see that morphine was used mainly, mostly in countries who are heavily opposed to euthanasia and assisted suicide.
Andrew Denton: This I do know about. It’s how my dad was helped to die after falling into a coma – slowly, painfully, using morphine. These are the unrequested deaths Alex describes as murders. That they are not recorded as euthanasia cases is, according to Eric Wijlick, from the Royal Dutch Medical Society, absolutely appropriate.
Eric van Wijlick: We do not talk about euthanasia if there is not a request, so it is deliberately ending the patient without request. That's what it's about, and sometimes the areas are grey. In such situations, sometimes doctors hope that patients will die. They prescribe the medications – for instance, the medications for palliative sedations. They give you the medication. Do we give a lot of medication? Do you speed it up? Those are the questions we are talking about, and sometimes doctors think they killed their patients. They did not, if you look at the amounts and the speed of those. That is a grey area.
Andrew Denton: There is nothing hidden about any of this. The Dutch question and record doctors end-of-life actions more meticulously than any country on earth. That’s how they know the practice sometimes still happens, though far less now that euthanasia laws have been introduced.
Dutch doctors have been tagged killers because they are describing in detail the decisions doctors the world over make when their patients are dying. The medication they prescribe, the doses even if they hope, in their hearts, their suffering patients might die more quickly.
They tick boxes on death certificates and fill in questionnaires that shine light on the dying hours – an honest effort to be transparent – but one open to a cynical twist.
Andrew Denton: Even though doctors helped write Dutch euthanasia laws, that doesn’t mean they find them easy to carry out.
Mariska Koster, a pulmonary specialist, was profoundly affected by helping one of her patients to die.
Mariska Koster: I remember it as if it happened last week. Actually, it was – it is now over six years ago, but I remember it vividly.
Andrew Denton: Her first experience came when an elderly patient, hospitalised and dying, requested Mariska help her to die.
Mariska Koster: Her children adored her, her husband adored her, and she said to me, “What I am having now, this disease – which is wasting me; I feel my strength slipping away – it is so contrary to who I am, who I always have been, how I want to be remembered”.
For over a week every day after work hours I went to her. We sat together and we talked, and during that week – I saw her deteriorating, because she was severely ill. We came to know each other, in a way we became friends, and after a week I said, “Well, yes, now I see this. Giving you your death is the very last thing that I can do for you, and now I am willing to do this”.
Andrew Denton: Following the due care criteria, Mariska ended her patient’s life. What happened next caught her by surprise.
Mariska Koster: I was standing in the corridor and I was shaking and sobbing, and the nurse took me away, gave me tea and sympathy and everything, and I was so grateful. That she supported me meant so much. And the whole procedure was so emotionally uprooting, that I was really very grateful for this support from the nurses.
For doctors it’s very difficult to really accept that their patient is going to die.
Andrew Denton: When it came to the moment where you did what you were asked to do did your training take over or were you still very emotionally engaged?
Mariska Koster: Both. I really felt I am doing something that is huge, that is grand. I am going beyond what is normal medical care. That really cost me.
I still see it. I can recall everything that happened as if it happened yesterday.
Andrew Denton: And when you recall, what is the strong thing that remains for you?
Mariska Koster: The thing that I see in my mind is the moment when the family had left, and the nurse and I went back into her room to look at her for the last time. And it was an evening in the late summer. The light was golden, a beautiful sunset, and the light was on her face, and she was lying there so completely tranquil, so essentially at peace, so different from the days before, when she had actually been suffering.
Andrew Denton: For Mariska, suggestion that doctors in the Netherlands become desensitized to killing their patients couldn’t be further from the truth.
Mariska Koster: You don’t do this lightly. It is not something doctors like to do; they don’t. If you can get around euthanasia as a doctor, you will do it, because it costs you.
Andrew Denton: For some people, cases where patients who don’t have a terminal illness but who are helped to die will always be sensitive. Particularly if, like Theo Boer, you have a moral objection to euthanasia in the first place.
Theo Boer: Just like many of you, I consider the active termination of a human life to be intrinsically problematic.
Andrew Denton: But Theo’s is a minority voice. According to polling conducted by The Economist magazine in 2015 public support for euthanasia in The Netherlands runs at over 80%. And, to date, no other member of the Euthanasia Review Committees has joined him in publicly expressing concerns.
The fact that Theo has, simply highlights one of the great strengths of the Dutch system – that it is transparent and open to debate.
What his concerns do not illuminate, however, is a slippery slope. Instead, it’s opposite: a law, devised by doctors, to encompass the unbearably and untreatably ill. And a system where close scrutiny is not only demanded, but enforced.
When I asked Gerrit Kimsma about the slippery slope, he was emphatic in his response.
We have been talking about the more difficult areas of Alzheimer's and psychiatric illness. That is the slippery slope that some people choose to describe, is it not?
Gerrit Kimsma: No, I don't think so. Because the reviews on a case-by-case basis make it possible to control it. A slippery slope is something that even if you want to, you cannot control it.
We have the safeguards before and, what we are confronted with is within society different moral limits, different moral conceptions about a good death. The fact that Theo de Boer disagrees with it means only that he holds a different opinion about the rights of human beings, and he is a Christian. He believes that life is precious and is God's gift, and actually it's impossible to return the gift.
Andrew Denton: For Kimsma, and the overwhelming majority of his fellow citizens, it is about an entirely different view of the universe to Theo Boer: One where people have a right to determine what happens at the end of their lives.
Gerrit Kimsma: What we do see is that there is a shift towards autonomy, meaning that people get the deaths that they choose for, that they request. And in itself I cannot see that that is immoral unless it is a case that as a society we have failed to support an individual. But that is not the case.
We are being transparent and I think we have a good system. We should be proud of it.
Andrew Denton: Dutch people don't die more easily than anyone else. Death remains mysterious, grand. Dutch doctors weep and tremble when they help someone die. In Dutch homes families shake and blink at the unreality of it all – just like they do in ours.
But – unlike in ours – in the Netherlands, there are clear and comfortable conversations about the end, which, thanks to Dutch law, means that people don't need to die the lonely, fearful, agonising deaths they are dying in Australia.
And in those conversations is a word you don’t often associate with dying: "beautiful". Grateful children describe the beautiful deaths of their parents – eaten up by cancer, eroded by Alzheimer’s – who know that there is nothing left for them but suffering. Not people who don't value their lives, but people who can rationally see that, for them, their lives no longer have value.
Under Dutch law, they get the opportunity to choose their ending without shame or fear. Better – with joy and the chance to farewell the ones they love with nothing left unsaid.
And for those left behind, who have seen their loved ones die well, instead of the scars carved by that awful question: "Should we have done more?” There are just the gentle tears we all shed for the dead – and for ourselves.
As Jeanne Heetman’s story shows, even on the fringes – those cases so beloved of the slippery slopers, where many Dutch doctors simply will not tread but where the Life-Ending Clinic willingly go – great caution is exercised. This is a mature and sober conversation. Even if doctors disagree – and some do, and they always will – on the limits of their law, they all understand the seriousness and due care that must, and does, lie at the heart of their system.
Yes, it is possible to cite the rising numbers of Alzheimer’s and psychiatric cases as cause for alarm, but not if you keep it in perspective: These are still a tiny percentage of the roughly 5000 euthanasia deaths in the Netherlands last year – themselves less than 4% of all the people who die there annually.
But even if those numbers were to double, each one of them would still represent a human being with suffering so unbearable that they have asked for help to die.
Think about that. How terrible must things be for any human to reach that point where living has become harder than dying?
I'll say it again: This is a mature conversation, built on years of openness, and a willingness to look, straight on, at the reality of all societies, including ours: that there is a small percentage of every population who will suffer horribly before they die and who medical science can’t treat. Faced with the choice between turning away from this suffering, because their own morality instructed them to, or stepping forward with compassion and due care to help, the Dutch chose to step forward.
Is it possible that we might do the same?
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
Andrew Denton: If you’d like to know more, head to the episode page at: wheelercentre.com/betteroffdead .
Next episode, I’m heading to Belgium, home of the most liberal euthanasia laws in the world. Home, also, of Tom Mortier, a man who claims his mother was wrongly killed because of them. Tom’s story is being used around the world as a cautionary tale about the slippery slope of euthanasia. But is it a true reflection of a law, and a society, gone wrong?
Andrew Denton: Steven, you've explained things very clearly, thank you. I hope I’m never in this building again in my life. But don't take that personally.
Steven Pleiter : [Laughing] OK. You're welcome. And even if you change your mind, you are still welcome.
Andrew Denton: I'm not coming back, Steven. That's what I'm saying. [Laughing]
Episode 7 - The Killing Fields of Belgium: Belgium part 1
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Tom Mortier: That's the whole thing. Where are you going to stop? If you kill my mother, then you kill, can kill many, many, many more people.
Andrew Denton: Tom Mortier lives in Belgium, home to what are often described as the most liberal euthanasia laws in the world. Here, people of any age, even, in some circumstances, children, can be euthanased. In 2012 one of those was Tom’s mother – a death, he says, should never have happened.
Andrew Denton: My name is Andrew Denton and you’re listening to Better Off Dead.
If there is an epicentre for anti-euthanasia sentiment, it’s Belgium. Opponents ask “What kind of a place is this where people voted to allow euthanasia for children? Where twins can be granted the right to die because they are going blind?’
Allegations are made of a euthanasia culture that has become so uncaring, the elderly are regularly despatched without their consent. The word “murder” is sometimes used.
Yet, for all these claims, since its inception in 2002, there has been no procession of Belgians coming forward to complain about what the law has done to them. Which is why Tom Mortier’s story is so powerful. In alleging the wrongful death of his mother, he has put a human face on the slippery slope. So I decided to go there to find out how Belgians feel about their euthanasia law.
Andrew Denton: Godelieva De Troyer, Tom’s Mortier’s mother, had been in treatment for depression since the age of 19, before Tom was born. She had sometimes considered suicide and, despite more than 40 years of therapy, her psychiatrist acknowledged there was no cure for her condition.
At the age of 64 she applied for the right to be euthanased.
Tom Mortier: I received an email on the 31st of January, an email from my mother stating that my mother – “I am in a euthanasia procedure and I'm now waiting for the result”. It was more or less like, “OK, there is a team who is investigating my question,” and she was waiting for the result.
Andrew Denton: Godelieva had applied for euthanasia four months earlier on the grounds of “psychological distress”. Under Belgian law, permission can only be granted if “the patient is in a medically futile condition of constant and incurable physical or mental suffering that cannot be alleviated”.
Tom Mortier: Well, she was with a psychiatrist for 20 years, and this psychiatrist said to her that yeah, she would never be cured from her depressions anymore so she would be having depressions for the rest of her life, but yeah, I mean, it goes up and it goes down. I mean that's the whole deal with depression.
Andrew Denton: The law dictates that, when a request involving a non-terminal illness is made, two doctors, independent of each other, as well as a psychiatrist, make a rigorous investigation of that request and of all available alternative treatments.
Tom Mortier: I mean, he, has his team, he has a psychiatrist, I mean was really willing, I mean, she's stating that's she's really listening to people, like all the other psychiatrists aren't listening to people, but she's really listening to people. So after two conversations with my mother, OK, she said my mother can be helped to die.
Andrew Denton: On April 20, three months after his mother’s email, Tom received a letter from her written in the past tense telling him that her euthanasia had been carried out the day before.
Andrew Denton: Was anyone else notified or was there a requirement for anyone to be notified?
Tom Mortier: No. We have an ultra-liberal euthanasia law, which many other countries they are looking at. So, it's like the killer of my mother, he is the hero of absolute self-determination. It's all about self-determination.
Andrew Denton: This wasn’t straightforward for anybody. When Tom was five, his father had committed suicide. To lose his mother this way brought back painful memories.
Tom Mortier: This is my, I am now living with it. I have been living with this since I was five years old, with all this pain and all this frustration and not having a parent. I mean, like, for example, seeing the other kids talking about their fathers, well, you don't have a father, he committed suicide, and now it's just, well, it's a continuation of what I already experienced.
Andrew Denton: That his mother could chose to die, and that others would help her, without telling him was, to Tom, inconceivable.
Tom Mortier: When I received that email, it was a tough situation. Although I knew of course that my mother was depressed, she had many friends, so she was still going everywhere, she was still going on holiday, so in fact nobody, even not her neighbours, not her best friends, knew that she was going for that lethal injection.
Andrew Denton: Tom’s pain, when I met him, was palpable; his anger too.
Tom Mortier: “ Are you going to give me the lethal injection? I'm asking you to. This is my absolute wish. I don't want you to inform my children.” What are you going to say?
Andrew Denton: You're asking me to respond to that?
Tom Mortier: Yeah, what are you going to say?
Andrew Denton: As a human being, I would respond to you and say, “I think your children need to know”.
Tom Mortier: OK. Well, as a physician, I would say to this woman, “Although you haven't had contact for the last year, your children have the right to know your thoughts”.
Andrew Denton: And here lies one of the wellsprings of Tom’s anger. He hadn’t spoken to Godelieva for a year before she died. Both he and his sister were estranged from their mother, which also meant she hadn’t seen her grandchildren.
When Godelieva email arrived in January informing him that she had applied for euthanasia, Tom, aware that she had expressed suicidal thoughts before but that they had passed, decided not to reply.
The news of her death three months later came as a deep shock.
Under Belgian law, Godelieva wasn’t required to tell Tom – or anyone – if she didn’t want to, though she did email him her intention – an email that went unanswered.
Andrew Denton: Tolstoy wrote: “All happy families are alike; each unhappy family is unhappy in its own way”.
Tom sees what happened with his mother not as a breakdown in his family but as a breakdown in Belgian society brought about by euthanasia law.
Tom Mortier: It's all about absolute self-determination. So if you have this legalisation of euthanasia, and they're all looking at the Belgian euthanasia law, well, these are the facts. You don't have to be connected with people any longer.
Yves Desmet: I can understand that it must be very hard for him not to have been informed of his mother's wish.
Andrew Denton: This is Yves Desmet, former editor of the daily newspaper De Morgen.
Yves Desmet: But his mother repeatedly expressed her wish for euthanasia, and in that case it was reviewed even more fiercely because it was psychological, where you also have the consent of a psychiatrist before you can perform the act.
Andrew Denton: Yves has been reporting on Belgium’s euthanasia law since its introduction in 2002.
Andrew Denton: Was there public sympathy for him?
Yves Desmet: I don't think so. I don't think so.
Andrew Denton: Why not?
Yves Desmet: Just as my son and my daughters have no right to impose euthanasia on me, they cannot stop me neither. It's my will, it's my decision. It's the individual that is in the centre of the euthanasia debate, and that is the big, I think, ideological, theological, ethical divide – that it is the right of the individual to decide what happens with him that is put in the first place – not the church, not the sons, not the family, not a doctor, nobody else but the individual, and if you cannot live with that kind of philosophical preference for the individual, then you have a problem with the euthanasia law.
Andrew Denton: Public support for euthanasia in Belgium is phenomenally high. According to polling commissioned by The Economist in 2015, 85% of Belgians are in favour and only 5% against. Yves thinks this is not a picture the world sees.
Yves Desmet: What bothers me also is that 10 years of euthanasia with I think we are now at about 10,000 cases in Belgium, that every time a foreign journalist comes here, after four questions the question then of Tom Mortier falls. It's the only questionable case in 10 years, so the 10,000 who have never been in question, where there was no inquiry, where everybody has said – the vast majority in every opinion poll of Belgium people who say “Euthanasia – fine with us”. No, there's one guy who says, “Yeah but my mother was [INDISTINCT],” and that's the slippery slope and that's the reason why euthanasia – “Ooh, we're never going to take it in Australia”. I find that very poor argumentation.
Arsène Mullie : I have four cows, I have a horse. I have also a moose. I think you have them in Australia?
Andrew Denton: A moose? Ah emus! You have an emu?
Arsène Mullie : Yeah, two.
Andrew Denton: Where do you get emus from in Belgium?
Arsène Mullie : You can buy everything, so it’s a…
Andrew Denton: This wasn’t a black-market emu, was it?
Arsène Mullie : No, maybe. I don’t know.
Andrew Denton: I don’t know what I was expecting when I went to meet Arsène Mullie at his farm outside Bruges. Certainly not a beaming, white-haired man in shorts and t-shirt introducing me to his emus.
Now retired, Arsène was formerly one of the most senior palliative care physicians in Belgium.
What does a palliative care physician do?
Arsène Mullie : Well, it's taking care of the dying phase, the last phase – taking care, whatever it means.
Andrew Denton: Arsène is in his seventies. He trained in anaesthesia and emergency medicine, but the last 20 years of his life’s work was in palliative care.
Arsène Mullie : There's a science also palliative care. But besides the science there's also the soul for palliative care, which has caught me, so to say.
Andrew Denton: Uniquely, the push for Belgium’s euthanasia laws came from within palliative care – remarkable because, historically, there has been antagonism towards euthanasia from palliative care physicians who see their role as helping people at the end of their life, not actively helping them to die. In Belgium, too, it was a source of debate.
Arsène Mullie: There were tensions about that: “Will the palliative care world be open enough and accepting of euthanasia?” You had, “I'm not doing palliative care to give deadly injections,” so there was unhelpful thinkings of egos.
There was a lot of exchange and bit by bit we changed to accepting in a sense the normality of this act as a helping act, because you can also end up in all kind of discussions – is it a medical act or not a medical act? In palliative care there are so many things which are not purely medical. If you, for instance, if you sleep with the patient at night occasionally, that's also not a medical act. You have to do what you have to do.
Andrew Denton: The embrace of euthanasia came from an acknowledgement amongst Belgium’s palliative care physicians – some within Catholic hospitals – that, even with the best care, not every dying patient could be helped.
Medically speaking, what are the limits of palliative care?
Arsène Mullie : Medically speaking it is often – it may be pain, but also uncontrollable psychological symptoms, uncontrollable existential suffering. This is medically speaking. But of course it's the patient – palliative care is total – it's about total life. It's Life with a capital letter, and when a patient sees that and you work with him – not in the sense of judging him – but in the sense of dialoguing with him. And if it then awakes for him that the best way to die is with euthanasia, then it's very stupid not to help him die with euthanasia.
Andrew Denton: Doctors and nurses struggled with the sight of dying patients being kept alive, but with great suffering, by the brutal miracles of modern medicine.
Arsène Mullie: Medical futility is a big problem in medicine in general but in intensive care certainly. It's continuing to do what you know although you feel that it has no utility anymore. Still you continue to do because you don't want to accept, for your own pride, that it has no utility. You continue chemotherapy, you continue intensive care and so forth. It's a form of putting yourself above everything – over pride.
Andrew Denton: For Arsène, and many others, putting themselves above their patient's needs was unacceptable.
What does it mean to a patient to know that one of the options they have is euthanasia?
Arsène Mullie : It's a relief. You see patients, they don't know what is dying and they are afraid. So living together with them, when you can really say, “You will never be forced to live longer than you want to live,” it's a relief, it's a high relief.
Andrew Denton: Arsène is a doctor – but there are times he sounds more like a philosopher.
Arsène Mullie : So to me this act of euthanasia it’s a sacral act. It's a difficult act which demands from me to go to the highest forces in me to follow the patient with the – but it's an act from friend to friend, it’s a love act.
We don't have to – never make a patient live longer than he wants at the end of life. It's a crime, so to say, to force the patient to live.
Andrew Denton: Under Belgian law any palliative care physician who doesn’t agree with euthanasia can opt out, as long as they tell a patient requesting help at the outset that they will not do so. Others, though, have come to understand euthanasia as an integral part of what they do.
Arsène Mullie: With the patient it's often intertwined. I mean he has a phase of palliative care and after the end of his palliative care he still wants to die and then it's so intertwined that we believed very strongly that this should be locked together in one and the same medical science. Many palliative care physicians have this openness. There is more than half of the euthanasias are through palliative care or with the involvement of palliative care.
Andrew Denton: It’s a radical shift. I asked Arsène how Belgian palliative care had come to embrace euthanasia against its central philosophy, accepted the world over that “We shall neither prolong nor hasten death”.
Arsène Mullie: I don't know. Anywhere in the world I would ask why they do not accept euthanasia, because certainly palliative care is a good thing, a very good thing, but certainly it does not solve the issue for all patients when they are ready to die. How can you say that you don't want to help if you're in palliative care? What do you do then with patients who want euthanasia? How can you say to a patient who suffers, “Keep suffering. Tomorrow it will be better”?
Andrew Denton: So why has Belgium developed a reputation as the slipperiest slope of all? Do the numbers suggest things are out of control? Far from it. Of all the people who die in Belgium, less than 2% do so by euthanasia, a percentage that has barely shifted since the laws began. Of those, well over 90% are people with terminal or chronic physical diseases.
What’s more, these numbers are reliable. This is a country that has analysed figures on euthanasia – dare I say it – to death. It’s become a statisticians’ paradise, producing official reports, categories, subcategories.
And it turns out that these figures have become grist to the mill of the international opponents of euthanasia. In all this detail, they believe they’ve found the devil. Of all the people who died in Flanders, Belgium’s most populous region, 1.7% were in a category called “life-ending acts without explicit request”.
It’s this small number that is being turned into a big deal by anti-euthanasia campaigner Alex Schadenberg.
Alex Schadenberg: OK, so I've written a book about the evidence – what's happening in laws, and I went through the data. So where we're seeing abuses a lot in both the Netherlands and Belgium, it's highly oriented towards people who are incompetent to make decisions for themselves. What you see in the data – it's very recent data, and that data made it quite clear that about 1.7% of all the deaths were lives that were hastened without request.
Andrew Denton: Alex, who is at pains to point out that his work is all based on original studies done by Belgian and Dutch researchers, estimates the total number of unrequested deaths in Belgium at about 1000.
For my clarification, is request a formal term within these laws or when you say “by request” are you suggesting that people are just being dispatched without their even knowing they were going to be dispatched?
Alex Schadenberg: A fair number of them were certainly dispatched without knowing, if you want to say it that way, without knowing they were going to be dispatched, certainly.
Andrew Denton: And how can you be sure of that from that data?
Alex Schadenberg: So when a study is showing to you that 1.7% of all deaths are caused without request, and this is the data showing they're usually in a hospital, they're usually incompetent to make decisions for themselves and they're on average about aged 80, you have to shake your head a bit and read this, because you see this isn't my data. I didn't do the study.
Andrew Denton: Alex’s charge is that the patients who die like this are the hidden victims of a euthanasia law that’s spawned an uncaring culture.
Alex Schadenberg: Euthanasia's become commonplace, but what do you do with the person who looks like their life has no value. They're lying there, they're incompetent, but they've never asked for this. There's no proof of asking for it. There's no signed document. There's nothing.
Andrew Denton: Is it your assertion that those 1000 deaths, or the majority of them, were in effect a murder because they were not deaths that anyone had consented to?
Alex Schadenberg: Murders, manslaughter – it depends on how you define it in the law. Yes, they are.
Andrew Denton: Murder, manslaughter – these are serious allegations. Professor Jan Bernheim is one of the architects of Belgium’s euthanasia law and a respected researcher. He knows very well the studies to which Alex is referring and initiated research to investigate in detail the controversial “deaths without explicit request”. His team even scrutinised the doctors’ handwritten notes in the box at the end of the questionnaire about their patient deaths, their scribbled clarifications of intention.
Jan Bernheim: When we look at these closely, then first, in, I think it was one-third of the cases, there was a request. However, the patient was beyond being able to repeat that request, because he was too far gone. He was comatose or was no longer in a state to re-state his request to have his life ended. And therefore the doctor ticked, “No, this was not at the patient's repeated request” The next thing is that if you look at the doses that were given there, again you find that they were not life endings. Those were doses that were given to control symptoms. Like, agitation of the patient or possibly pain.
Andrew Denton: I do not understand – if they are called life-ending acts but they are not life ending, how do those things happen?
Jan Bernheim: They are called because the doctor ticked the box “I gave medication with the intention to shorten the patient's life”.
The intention of the doctor was not to end life. The intention was to treat the symptoms and probably that is what they did. However, because of the very strictly constrained labelling of the question, he did tick, “I did administer drugs with the intention, and this was not at the explicit request”.
Andrew Denton: So were doctors doing something underhanded here?
Jan Bernheim: No. When you then look at those cases which were without explicit request if you analyse the details of the clinical process which took place, then you see that those were not euthanasia or they were not life-ending – namely, the doses given were really the same as with palliative sedation.
Andrew Denton: To Jan, this is not something devious, as Alex is suggesting, it is what doctors should be doing.
Jan Bernheim: Every good doctor should do this, right? That is not upon request of the patient, because he cannot any more for whatever reason. So the point is Belgian doctors do that too. Except they get – every several years they get a survey to take where they are asked, “Did you give drugs that could shorten the patient's survival?” “Yes”. “Was it your intention to do that?” They say, “Yes”. And, “Was it at their request?” They say, “No”. So, you know, this is absolutely dramatic. They make a terrible fuss about this; but this is, of course, simply good practice.
Andrew Denton: Alex Schadenberg has taken his insinuations of murder amongst Belgium’s doctors around the world, including to his home country of Canada, as their courts grappled with the question of whether an assisted dying law could ever be safe.
Here, his arguments came apart under scrutiny. There was no body of evidence supporting the anti euthanasia lobby’s claims of a slippery slope in Belgium. The Canadian Supreme Court agreed as much in its unanimous 2015 decision paving the way for an assisted dying law in their country.
So how did Alex Schadenberg reach his conclusions? I asked the Dean of the University of Tasmania’s law school, Margaret Otlowski – an independent legal academic who has extensively studied end-of-life practices – to examine his claims.
Margaret Otlowski: What is absolutely essential is to go back to the sources of the actual peer-reviewed literature that he is purporting to analyse and through a systematic review of that what I could see coming through quite clearly is his very selective use of material. So deliberately, for example, leaving out parts of a quote that don't suit the argument that he wants to make about, for example, the slippery slope.
Andrew Denton: It’s a tactic as old as the hills – to put your research forward as scientific while in fact leaving out the bits that don’t suit your argument. Margaret cites an example – a 2009 article quoted by Alex from the New England Journal Of Medicine.
Margaret Otlowski: So he's quoting from Bilson but – and he quotes bits that suit his argument where Bilson and others had written, “We found that the enactment of the Belgian euthanasia law was followed by an increase in all types of medical end-of-life practices” but critically what he omits is “with the exception of the use of lethal drugs without the patient's explicit request”. And that's an absolutely integral part of the argument. Also an omitted part of what was a paragraph that he quoted some of. Bilson and others wrote, “No shift toward the use of life-ending drugs in vulnerable patient groups was observed".
Andrew Denton : Which is the opposite of what Schadenberg suggested.
Margaret Otlowski: Absolutely. Absolutely. It's just staggering that he can come to a completely opposite conclusion from that body of research.
Andrew Denton: Did you find more than one example of this in the book?
Margaret Otlowski: Yes, no. I found a number of examples where he takes an article at one level but then doesn’t look at the qualifying comments or the caveats that have been given or the possible other explanations.
Andrew Denton: In terms of painting an overall picture, would you call these significant omissions?
Margaret Otlowski: I would, I would, and my concern is that his work, as far as I know, isn’t peer-reviewed work. To get journal articles published there is a rigorous peer-reviewed process, so I’m much more inclined to accept the validity of the half a dozen or so articles that are in very reputable journals, New England Journal of Medicine, The Lancet and so on. The ones that have actually done the work in the Netherlands and in Belgium, overwhelmingly the message they give is that it’s not an uncontrollable practice; to the contrary, that it seems actually incredibly well regulated and that there has been a diminution in cases of unrequested euthanasia or assistance without explicit request.
Andrew Denton: For doctors who work in Belgium, the accusations of Alex Schadenberg and others cut deep. Luc Proot, 69, is a retired oncologist who is now part of a specialist team that deals with non-terminal euthanasia requests. Almost the first thing he said when I met him was “You think we’re all murderers”. I asked is that what he really thought.
Luc Proot : Yeah, sometimes, yeah. Some conservative parts of the world certainly see us as murderers.
Andrew Denton: And how does that make you feel?
Luc Proot : Badly, because it isn't true. Our act is so progressive, so well written, the conditions are well stated. We know the requirements, the whole procedure, so if you follow that, you know that it's about a patient in a terrible situation even if he is not terminally ill – they are in such a terrible condition that euthanasia for them is really a salvation.
Andrew Denton: Why do you think that people in other parts of the world have got that wrong? What is it they are not seeing?
Luc Proot : Of course we have done it through a whole process. They haven't. We are speaking about euthanasia in this country during more than 30 years now. For example, in the beginning there was a great opposition even for euthanasia and terminally ill patients, and there was an opposition from the palliative care physicians. but nowadays we see that it is accepted that in terminally ill – for example, cancer patients euthanasia is part of palliative care, and we see that more and more palliative care physicians are involved in that process.
Andrew Denton: Does it upset you when other people may think that you and your colleagues do not think enough about the act of euthanasia?
Luc Proot: Yes, because if I am speaking for the physicians here in Belgium, certainly when we are talking about non-terminally ill patients, you take your time for each case. It is much more than an act of euthanasia. You really try to understand the unbearable suffering of the patients, and I think that is important here.
Andrew Denton: Euthanasia for non- terminally ill patients was almost unknown in the early years of the law, but patients complained that they were being unfairly stigmatized: Psychological suffering, they argued, could be just as unbearable as physical pain. Like cancer patients, they were subjected to futile treatments that diminished their quality of life. Though few in number, it is these cases that have given anti-euthanasia campaigners fertile ground in which to sow the seeds of doubt. This is British academic and historian, Kevin Yuill, addressing an anti-euthanasia conference in Adelaide.
Kevin Yuill: If you want to see the future of institutionalising a culture of assisted suicide let's look at what happened in Belgium. Let's look at the fact that the two 45-year-old twins were given euthanasia because they were going blind and they did not want to live any further.
Andrew Denton: The story of the twins going blind is a favourite of the anti-euthanasia lobby; held up as a shining example of a society that has completely lost its moral compass. Not only did they not have a terminal illness but – so the story goes – they had to doctor-shop for two years before they could find one who would do the deed.
As with all these cases, the full story turns out to be infinitely more complex.
Marc and Eddy Verbessem, both deaf since birth, found themselves in their mid-40s faced with a suite of severe medical problems including the onset of blindness. Faced with a life where they would be institutionalised, cut off from the world, and unable to work and live together, they requested euthanasia.
Contrary to the stories, they didn’t spend two years doctor shopping. The family’s long-time GP, who had accepted the twins’ request, swore as much in evidence accepted by the Canadian Supreme Court.
And what these stories never mention is that while the twins’ parents and siblings tried to dissuade the boys, they ultimately supported their request to be euthanized – an act of understanding and compassion which says more about the twins’ suffering than any medical report ever could.
The Verbessem family rarely speak publicly about their son’s euthanasias. When we contacted them they preferred not to be interviewed but did want it known that they felt deeply distressed at how the twins deaths were being misrepresented as a “law gone wrong”. They believe in the law, they said, and were grateful for the serene and peaceful deaths it gave Marc and Eddy.
Tom Mortier: I have been living with this since I was five years old, so with all this pain and all this frustration.
Andrew Denton: No matter which side of the euthanasia debate you’re on, it is impossible not to be moved by Tom Mortier’s story – the man whose depressed mother legally ended her life and he had no say in it.
Tom Mortier: How hard is it? Well, it's really, this physician who did this, OK, he eliminated the problem with my mother, but he created another problem with me.
Andrew Denton: The physician Tom is referring to is Dr Wim Distelmans a champion of the individual’s right to choose, and a charismatic leading light of the euthanasia medical community.
Tom Mortier: Well, I think my mother went to a lecture of Distelmans', so the physician who killed my mother, he was giving lectures everywhere in Flanders, like, for the Free Humanists and talking about euthanasia and the right to do die.
Andrew Denton: Tom believes that Wim encouraged his mother to die. I put this to the former editor of Der Morgen, Yves Desmet.
One of Tom's central beliefs is that a charismatic, powerful doctor like Professor Distelmans...
Yves Desmet: Can talk people into their deaths?
Andrew Denton: Yeah, persuaded his mother to a course of euthanasia.
Yves Desmet: I know Distelmans personally. I know him for more than 10 years. I know a lot of his cases. I spoke with a lot of his patients. If someone is reticent about performing euthanasia, it's he. Tom is made to look like a guy who's waving around his needles: “Who's next? Who's next?” That is really – that's not the case. Would that be the case Distelmans would have long been in jail. Instead he's hailed by the whole Belgium society. He has won numerous prizes. He is one of the most respected intellectuals and doctors in Belgium.
So the fact that one son has very – a lot of psychological difficulties with the death of his mother from whom he was estranged – I can understand that, I can even respect that, but that gives him no right to defame a doctor who has never been accused of anything, who has never been convicted and who is, I think, the most controlled and the most regarded doctor in all Belgium.
Andrew Denton: It is the very respect accorded to Distelmans that, Tom believes, highlights what is wrong with the system.
Tom Mortier: For me, in my, from my point of view, my personal point of view, I find this completely insanity. But of course, pro-euthanasia lobby, they created for their purposes a very good thing, of course. So, the prize-winning physician who is constantly winning prizes in Belgium, he is the chairman of the euthanasia commission, he's killing many people. So he's reporting his own commission, and no report has ever been sent to the prosecutor. Someone has to tell me if this is OK or not.
Andrew Denton: As chair of the Federal Control and Evaluation Commission, Wim Distelmans is one of a group of 16 reviewing euthanasia deaths to ensure that doctors have complied with the law. His committee colleague, lawyer Jacqueline Herremans, explains that the Commission is made up of.
Jacqueline Herremans: Eight doctors, four lawyers and four people coming from the society, much more with experience of incurable patients. This commission is nominated by the government. When the Parliament has to review the nominations it has to be attentive to respect a balance between different conceptions. So it is not the question that you are going to find in the 16 members of this commission all people who agree with euthanasia.
Andrew Denton: I asked Jacqueline what happens when the Commission reviews a controversial case.
Jacqueline Herremans: If one member thinks that there is a problem with one declaration, he has to put that case open to the meeting and so say, “I disagree. I think that I'm not comfortable with,” for example, “the diagnosis, the prognosis, or there is no answer about the suffering,” and so on. So the task of the members of the commission is very, very heavy. If we arrive at the conclusion that the main conditions are not fulfilled, we have to take the decision by a two-thirds majority to send the file to the prosecutor.
Andrew Denton: Wim Distelmans’ handling of Godelieva De Troyer’s case was approved by the commission. Details that have since come to light about it include that he met with Godelieva at least six times in the 6 months before she died, and that more than one psychiatrist and the family priest were also closely involved in her case. Two weeks before her death, Distelmans asked if she would call her children. Godelieva, as was her legal right, declined.
Andrew Denton: Wim Distelmans did not accept our invitation to be interviewed for this podcast. I spoke instead to one of the psychiatrists who worked with him on Godelieva’s case, Lieve Thienpont.
Can I talk briefly about Tom Mortier, who I spoke to earlier this year, who believes that his mother did not truly want to die and that she was encouraged to euthanasia by Professor Distelmans, who, in Tom’s words, was “blinded by the tunnel vision of her madness” and I know you sat in a meeting when Tom brought his grievances to Dr Distelmans. Do you understand Tom Mortier’s anger?
Lieve Thienpont: I want to speak, first of all, more general. That many patients come from a dysfunctional family with a lot of problems since years and years, and it’s very difficult at the end of life to make bridges or – how can you say – repair the relations. Sometimes we cannot. We always try very hard, but as I said before, some patients have very good reasons to stop the attempt to make the bridges between family members. So that’s much important to know.
Secondly, we never, as you said, promote euthanasia. You said something in the beginning that Tom Mortier said, that Professor Distelman…
Andrew Denton: Encouraged, persuaded.
Lieve Thienpont: Yes, encouraged. We never encourage euthanasia. Never. We always encourage to stay alive, but we accept when the patient say it’s enough and then we try to help them die in a good way.
Andrew Denton: Tom’s story is being used around the world as the ultimate cautionary tale about the slippery slope of euthanasia laws in Belgium. When I met him he was one of the featured speakers at an anti-euthanasia convention in Adelaide.
There’s no doubting the pain that he feels. His is a tragic family history and it is impossible not to feel great sympathy for him. But is it a true reflection of a law, and a society, gone wrong?
Few in his own country support that view – not politicians, the media, the medical profession, or the public. They see what happened as his mother’s right, under law, to have sought an end to her lifelong suffering.
Perhaps most tellingly, his own family doesn’t support him either. Tom’s sister, who lives in Africa, did reply to Godelieva’s email announcing her intention to seek euthanasia, saying that, even though it hurt her, she would respect her mother’s decision.
She has not joined Tom in his complaint
For journalist and editor Yves Desmet, the ugly picture painted of euthanasia in Belgium is hard to take.
Yves Desmet : It's very confronting for us to see the way, the very harsh way foreigners look at euthanasia practice in Belgium.
Andrew Denton: Like the vast majority of Belgians, he sees no sign of the slippery slope.
Yves Desmet : We had 10 years of euthanasia practice. Every case has to be reported. Every case has to be – there have to be three doctors who have to give their yes before it is done. It is looked at after. Was it done properly? It has to say something that I think, with one or two exceptions, that of the thousands and thousands and thousands of cases we had in those 10 years, only one or two complaints were ever made.
If there was a slippery slope or if there was an abuse of the possibility, we would have long heard about it, I think. It's impossible that thousands and thousands and thousands and thousands of cases which we already had in those 10 years would all go unreported if there were cases of abuse. I don't believe that.
Andrew Denton: It is worth noting that, some months after our interview, Dr Marc Van Hooey became the first doctor to be sent for prosecution by the Federal Control and Evaluation Commission. His case will be heard in 2016 and, regardless of the result, it’s a reminder to all Belgian doctors about the serious consequences of not following the law.
Though Yves rejects the slippery slope, he understands that, at the furthest reaches of the law, there will always be debate.
Yves Desmet : The debate now is where you reach the boundaries. For example, nobody has a point against giving euthanasia to a physically suffering person. But what do you do when someone is suffering psychologically? That's another kind of thing.
Andrew Denton: It’s a good question. And, for me, it led to another – the most confronting of this whole journey and the focus our next episode: How can doctors know enough about the human brain to make life and death decisions?
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
If you’d like to know more, head to the episode page at: http://www.wheelercentre.com/better-off-dead
Episode 8 – Darkness visible: Marjorie, Edith & Laura
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Laura: I’ve had enough of all this. It feels like nothing gets to me anymore. It’s like I’m dead inside. I’ve tried, I’ve really tried. But I just can’t. It keeps feeling empty whatever I do, and pointless.
Andrew Denton: This is ‘Laura’. She lives in Belgium and, after years of mental suffering, her request for euthanasia has been granted. Laura is just 24 years old.
Andrew Denton: My name is Andrew Denton and you’re listening to Better Off Dead.
When I set out to learn about assisted dying, I told myself that I wouldn’t look away from any of it, no matter how hard. This determination was shaken when I learnt of Laura.
Immediately, alarm bells went off.
My gut reaction was, “A 24-year-old who’s not terminally ill? How can they be so sure they can’t help her? Surely there’s a point at which a society goes, “No, you have too much life ahead of you for us to help you die”?
If you asked me, “Where is the line where it got uncomfortable?” this was it.
To me, this seemed unacceptable. Dangerous.
The days that followed, talking with some of Belgium’s leading psychiatrists and physicians, were amongst the most intense I’ve ever experienced.
Emotionally, I couldn’t shake the thought, “This doesn’t seem right,” but intellectually I wondered, “Is there more here than I know?”
As I was grappling with it, I rang my wife in Australia. I told her about the young woman and what I had been learning about why doctors here thought it allowable she be granted the right to euthanasia.
To my dismay, she responded fiercely. “I support assisted dying,” she said, “but this is not right. You’ve drunk the Kool-Aid on this, Andrew”.
Sitting in my hotel room in Brussels, late at night, I wondered if she was right. Was my belief in assisted dying blinding me to something that was fundamentally wrong?
Maybe this really was the slippery slope?
To be honest, I toyed with not including this story in the podcast: It is so fraught with ambiguity and nuance that I feared it could easily be misunderstood and derail everything else I’ve been arguing.
But two things persuaded me to keep it in: First, that it was the people who were treating this young woman who had alerted me to her case. They wanted me to look at it – to try and understand. I realised that, if I was going to be honest about the case for assisted dying, then I had to give everyone the chance to hear what I had heard – no matter how confronting.
And, second, a meeting I had, two hours’ drive from Brussels, with a man whose sadness was so intense it was almost visible.
The story he told would change my understanding of the world.
Andrew Denton: Before we get to that story, and the case of Laura, a question: What if it turns out that the offer of euthanasia actually saves lives?
Marjorie Vangansbeke: My childhood was – actually a lovely childhood! Living in Oudenaarde, lots of green, lots of friends. Being playful, doing naughty things, building camps… actually a lot of things outdoors, lots of sports. Good people around you.
Andrew Denton: Margery Vangansbeke’s early years sound idyllic. As she grew up she took on the life of an adventurer.
Marjorie Vangansbeke: I'm a pilot as well. I do scuba diving. Now I've become a cook. It's interesting and it never stops, this constant curiosity. There are things you do – actually you can do by yourself; you don't need anyone else.
Andrew Denton: Doing things by herself was important to Marjorie because, from an early age, she struggled to connect. By her mid thirties Marjorie’s isolation from other humans had deepened to an alarming degree.
Marjorie Vangansbeke: I had no communication I think for six years. I lived completely by myself, no communication – so even the way you think, speak, isn't right any more, compared with your age.
Andrew Denton: Can you describe to me why you felt you had to spend those six years within yourself?
Marjorie Vangansbeke: I think it was the communication with other people didn't work, because each time you bump into walls and then it's like OK. You are very sad by yourself, and if you do it for so long you have no realisation anymore what you're really doing. So you hide really.
Andrew Denton: You get locked in your own sense of yourself.
Marjorie Vangansbeke: Yes.
Andrew Denton: How about your family? Were you able to talk with them?
Marjorie Vangansbeke: I had no communication with them.
Andrew Denton: You couldn't talk to them or you felt they couldn't talk to you?
Marjorie Vangansbeke: I think it's both ways. It goes both ways. I couldn't talk to them, and actually they ran away. Run away – yeah, that's a very good way of defence.
Andrew Denton: So they could see the change in you and they didn't know how to approach that?
Marjorie Vangansbeke: Yeah, that's it.
Andrew Denton: Marjorie couldn’t make herself understood to others and she couldn’t understand why they shunned her in turn. To help her break out of the cage in which she was trapped she sought psychiatric help.
Marjorie Vangansbeke: I was treated by a doctor between 34 and 40 years old. Evolution was just like going downhill and I said, “Well for six years you as a professional within your trade as a doctor, you cannot help me any further. So if you did, as a professional, everything you could, then we both know there is no hope and I will not accept to live”.
Andrew Denton: Did you have anyone you were close to in your life?
Marjorie Vangansbeke: Not in those six years. Before then, yes.
Andrew Denton: So by the end of that six years you had in some ways made yourself a ghost?
Marjorie Vangansbeke: Yes, I'm pretty good at that.
Andrew Denton: Marjorie was alive but hardly living – an invisible being alienated from her friends, family and community. If this was life, she’d had enough.
Marjorie Vangansbeke: I just went for, “OK, we'll do this – euthanasia. It's over and done”. Because if you are in that negative spiral, you don't see anything clearly, it's painful. It’s like my body hurt without any reason, because I wasn't ill. It was just ligaments, muscles, even your skin, like everything was “Ow”. Just mentally completely worn out, a wreck. Yes, a wreck. You don't want to live like that.
Andrew Denton: Do you remember the moment where you went from being in pain to thinking, “I want to end this”?
Marjorie Vangansbeke: Yes, I recall that, and it was like, “Phew, I have the address. I will drive there, ask for euthanasia, and it will be all fine. It's over”.
Andrew Denton: What happened next?
Marjorie Vangansbeke: So I went to ULteam in Brussels, a location where you can ask for euthanasia.
Andrew Denton: ULteam is a specialised medical unit that deals with difficult end-of-life requests.
Andrew Denton: When you applied for euthanasia, were you told, “Yes, this is possible, but first you have to do these things”?
Marjorie Vangansbeke: There was not a clear yes or no. It was just more an introduction the first time. I didn't speak much then. I remember it was Dr Thienpont asked me certain things, then I go, “Here, it's all written down here. Here. Just read that”. I said, “But I do want to have a conversation with you”. But if you don't speak for six years, it's – the way you talk is – it doesn't sound good. I mean you're slower in your talking. You have to think more. Also your structure in what you say is chopped.
Andrew Denton: Your own language has become a foreign language.
Marjorie Vangansbeke: It was. Yeah.
Andrew Denton: team psychiatrist dug deep into her life and psyche. The result was not the free pass to death Marjorie had been hoping for.
Marjorie Vangansbeke: She gave me a card with three points. One was research Asperger's syndrome; two was a psychologist to visit, kind of to speak about Asperger's to get more insight of it; and then there was a next appointment at ULteam in Brussels. I was really not pleased with them. Because it was like, “Oh no, there we go again, another title – from psychosis to Asperger's. And I looked it up – Asperger’s, OK – internet, library, some books, and it was funny. I really had so much fun reading it – because it was me.
Andrew Denton: Under the guidance of ULteam , Marjorie was sent to group therapy to better understand her diagnosis of Aspergers.
Marjorie Vangansbeke: And most of them are Asperger. I mean you recognise it like that. But I didn't go right from the start when I knew. It took six months to find out – because if you read it, it's funny, but what does that mean?
Andrew Denton: Marjorie learnt new skills to help her navigate the world.
Marjorie Vangansbeke: What do I have to avoid and not do is also very important. That's what I've learned the last year now – what not to do. So there are steps you have to do by yourself, and they worked.
Andrew Denton: So you came to ULteam , you were given Asperger's to research, you saw yourself there, you spent six months working on things that were suggested to you. Were you still interested in pursuing euthanasia?
Marjorie Vangansbeke: No, it's that time I went to the group, and I see all those other people and I was thinking, “I am not alone”. That's how it went and it worked out really good.
Andrew Denton: If you hadn't applied for euthanasia, which led you to the diagnosis of Asperger's and the chance to learn to be in control, what do you think might have happened? What do you think you might have done?
Marjorie Vangansbeke: I probably would have committed suicide.
Andrew Denton: Under Belgian law, permission for euthanasia can only be granted if “the patient is in a medically futile condition of constant and incurable physical or mental suffering that cannot be alleviated”.
In the case of psychiatric suffering, three doctors, one a psychiatrist, must independently come to the same view that the case is so intractable that the request for euthanasia can be granted. And this only after all possible treatment options are canvassed.
There is another important safeguard too – the patient has to be mentally competent to make a request. But how does that work when someone has severe psychiatric illness?
Lieve Thienpont: If we are not sure that they realise very well what they are asking for, then we are very, very careful of course.
Andrew Denton: Lieve Thienpont, 63, is a psychiatrist who works at ULteam.
Lieve Thienpont: And sometime, for example with patients who are psychotic or almost psychotic, we will not help with euthanasia. We have to be sure that they know exactly the consequences of euthanasia, the consequences of the question.
Andrew Denton: It was Lieve who saw Marjorie and who directed her towards a diagnosis of Asperger’s.
Lieve Thienpont: It's because of autism they have other problems. They are depressed. They have no social contacts, they are isolated – financial problems. And for autism there is no solution – a real solution. It's clear that most of them are very intelligent. So they know that there is not much prospects, and they don't want the quality of life they have. So after years and years of looking for solutions for their depression – being in hospital, a lot of medication, electro-shocks and so on, they want to die, they want to stop their looking for solutions.
Andrew Denton: Lieve has worked with ULteam since it was established in 2011 to deal with the most complex euthanasia requests.
Andrew Denton: What are the kind of psychiatric illnesses that people come here with?
Lieve Thienpont: All kind of illnesses, but I did research from 100 patients and all of them are chronic – long history of illness, many treatments, most of them have also problems – social, economic – so there is chronic suffering. Many of them are less or more therapy resistant. That's the most important problem.
Andrew Denton: Many of the patients Lieve sees have multiple problems that, collectively, make their suffering so unbearable that they request euthanasia. Even so...
Lieve Thienpont: Most of the people don’t want to die. They want to live, but they don’t want the life they have. They are alive but they don’t have a life. And they want to change it, most of them, and so some of them are very grateful afterwards, that they find another way.
Andrew Denton: Many, it seems, do find another way.
Lieve Thienpont: More than 50% of the people asking for euthanasia are finding other ways, and sometimes we can help to open ways because they can speak about their wish to die. It's totally different with suicide, because with suicide thoughts they are sitting in a corner alone. They don't want to speak about it. With the euthanasia question it's totally different. It's the opportunity to speak with them and to look together if we can find better solutions, and often we can.
Andrew Denton: Those who argue the slippery slope about Belgium, point particularly to the rising numbers of psychiatric euthanasia cases. From zero when the law first came in, in 2002, to a reported 58 cases in 2011 – a number that, in 2013, increased to 92. What those statistics don’t show is the number of people for whom the process of applying for euthanasia helped them find another path. People like Marjorie.
Marjorie Vangansbeke: In my case it was a gift. It's priceless, what happened there, just realising what your condition is. And it’s not just – the right diagnosis is fantastic, but then you have something to work on.
Andrew Denton: Marjorie’ s story gave me pause for thought but, still, I was confronted by the idea of 24-year-old Laura being legally granted the right to die. Even more, when I discovered a 2015 research paper Lieve had published in the British Medical Journal.
Andrew Denton: You say in the report here that “the concept of unbearable suffering has not yet been defined adequately and that views on this concept are in a state of flux”. Can you give me a sense of what the different views are within your profession about unbearable suffering?
Lieve Thienpont: Well I think one of the important questions is: is it something that we can make more objective?
Andrew Denton: How do you mean by objective?
Lieve Thienpont: It's not…
Andrew Denton: Something you can judge from the outside?
Lieve Thienpont: Yes, yes, and I believe we cannot. We cannot. So it's very subjective. It's – only the person himself, who can decide if the quality of life is acceptable or not. But we are doing now a new research just to describe unbearable suffering. How does that suffering look? For example, almost all of them will tell you that it's chronic, for example, or almost all of them will tell us that the consequences are very, very bad – social, economic, psychological. It's not only the illness but the consequences of that illness that makes the quality of life.
Andrew Denton: You say in this report in your conclusion that unfortunately there are no guidelines for the management of euthanasia requests on the grounds of mental suffering in Belgium and taking into account the ongoing fierce ethical debates, you say 'It is essential to develop such guidelines and translate them into clear, detailed protocols that can be applied'. What are your thoughts on the kind of guidelines that are needed?
Lieve Thienpont: First of all, if we offer a new therapy we must know that it can be or there is a big chance that it is successful, because in psychiatry you can always find something else to do but we have to know that it can be really successful for a long period, not for one or two days but for longer periods. So that's the first condition.
The second is that the patient – it must acceptable. The patient must have enough energy left to go that way for the new treatment and in a time that is acceptable for the patient. I give you an example. I am thinking about a young patient, about 30 years, was 10 years in the same hospital for anorexia. The hospital was not specialised in it, not at all. So after 10 years' hospital you can say – and we did it, “There are hospitals who are better, who are more specialised in your problem, so please try it, and try it but not for one month. It takes, again a year, two year, three year. We know it's a very severe problem”. So it depends on the patient. If there is energy left after all those years to try another way for, again, many years.
Andrew Denton: Because, as you said, there's not an agreement about what unbearable suffering and there's not clear guidelines about how to act...
Lieve Thienpont: No, you say it's not clear. I think it is clear – unbearable is what the patient can't bear any more.
Andrew Denton: OK.
Lieve Thienpont: Yes, so that's clear. But how that suffering looks like, that there is much more work to do to describe it.
Andrew Denton: Because this is such a critical – a crucial thing, life and death – that without clear guidelines it feels to me there is a danger there for you and for vulnerable patients.
Lieve Thienpont: Yes, let us say that in another way. Of course we are working very hard on the guidelines and we are developing them but till now they are not written down as guidelines. We are all working in a team – so a team with psychologists, oncologists, psychiatrists and so on, so we are all together working on those guidelines, but not – at the moment we don't have them written down.
Andrew Denton: Despite Lieve’s explanation about developing written protocols to guide physicians in these cases I remained uneasy. How can they know that a patient’s psychiatric suffering is unbearable if they don’t know what that looks like?
Luc Proot: We wanted to learn – what are the factors that can convince us that the physical or mental suffering of the patient is indeed unbearable?
Andrew Denton: Luc Proot, a retired oncologist, has studied unbearable suffering in both cancer and psychiatric patients. He is one of many professionals at ULteam responding to requests for psychiatric euthanasia.
Luc Proot: There are non-psychiatric physicians, like me, there are psychiatrists in the team, there are psychologists, there are lawyers, there are nurses, there are spiritual caregivers etc etc. It is a team of 12 to 14 people. We discuss all difficult cases again and again and again. It can take months, even more than a year, before we come to a final conclusion, certainly in that kind of patient, in a psychiatric patient.
Andrew Denton: Luc has been part of the team managing Laura’s case for the last 14 months.
Andrew Denton: There is obviously quite a lot of publicity and conversation about this young girl who is going by the name of Laura, who is 24. That, to the eyes of somebody outside of this country, seems like a very shocking thing – that a 24-year-old may wish to die and that that would be allowable according to the law. Can you explain something of this case and how that conclusion has been reached?
Luc Proot: It is an example of the terrible mental suffering that even young people can have, and certainly it started when they were very young. Even that young person is in treatment for more than 15 years, even that young person. And she has had all kinds of treatments and their physicians tell us that she is resistant to treatments. And today after many discussions the clarification is favourable, but if she will come to euthanasia I don't know.
Andrew Denton: By “clarification” Luc means the assessment of her case – one that led to her request for euthanasia being granted.
Luc Proot: Before taking this decision it took us a whole long process, it is not only about the medical history of the patient, it is also about his life history, and certainly, for example, in psychiatric patients, if you talk to them, you learn that they are treated for many years – 10 years, 20 years, 30 years – that they have all kinds of treatments, not only medication but also all kinds of psychotherapy.
They recovered, they relapsed, they start again the treatment, they recovered again, they relapsed again, but we see that the time between the recovery and the relapse shortens. And at a certain moment there is no recovery anymore and they are in a continuous state of mental distress, mental suffering, and that is the moment that the death wish is born. I am an oncologist from in my former life before I retired, and what I see – the difference between a cancer patient and a psychiatric patient is not very great. You see, in a cancer patient he recovered, relapsed. We give him a second line of chemotherapy, he relapsed again. We give him a third line of chemotherapy, knowing that his chance of recovering is smaller and smaller. And at a certain moment we have nothing any more, and we accept that that terminally ill patient may request euthanasia.
The difference between that cancer patient and the psychiatric patient is the outside. In the cancer patient who is terminally ill you see the patient. He is much thinner, he has pain. But the difference is the psychiatric patient has also pain inside. On the outside it's a normal person. And that's the difficulty. But the pain is sometimes worse than the pain of cancer patients. That's very difficult to understand and to say that to other people.
Andrew Denton: A key to recovery, experience shows, is reconciliation.
Luc Proot: We learnt that if we can reconcile the patient with her family, with her friends, with her life, that kind of rehabilitation is very important. They need a whole network around them. Because in their mental suffering they lose their social network, and that's one of the reasons why their mental suffering is so terrible.
Andrew Denton: But it’s a fine line: For vulnerable people like Laura, the possibility of coercion has to be considered.
Luc Proot: We have to be very careful because it could be, it could be an external pressure on her in the direction of euthanasia. And that we will avoid. We have discussed with her that she has much more to think about herself, let the outside world outside stay under treatment – it's very important for us – and try to find some courage and come to a final decision – tomorrow, next year, in 10 years – I don't know.
Andrew Denton: Is she comfortable with her decision right now, that that's what she wants?
Luc Proot: I don't know. It is up to the patient to decide whether or not they will have the euthanasia. And what we see now is that the whole attention given to her, gives her new courage, and I'm very happy for that, because perhaps she will wait, she will put her euthanasia on hold. From that point of view, I am happy that the world is looking to that case. She told me, “I am happy because people now will understand a little bit what mental suffering is”..And we work together with her psychiatrist and yeah, she is still in treatment. I think that we have still a chance to keep her ongoing.
Andrew Denton: Regardless of what a law says, should a society be letting a 24-year-old person go who doesn't have a life-threatening illness, a terminal illness?
Luc Proot: But it is a life-threatening disease, That's what the outside world don't understand. Psychiatric disorders are life-threatening diseases. That's what they call a taboo, still a taboo, and we try to, first of all, to other physicians when we were speaking with them to break open that taboo.
Andrew Denton: I think one of the things that people struggle with – probably I struggle with – is I accept that she has great pain in her 24 years of life, I do not doubt that, but what I struggle with is the thought of the life story that she may never have – of the life ahead with children, lovers, life changes. So that is a hard thing to reconcile to.
Luc Proot: Yeah, but that's your opinion. I mean that’s an opinion of a not psychiatric patient. For her, her future is only mental suffering. Mental suffering. No possibilities of a definite cure – also important. They know that. They don't think about children, a life with a husband and children. Some of our patients have been married but it was a disaster. Some have children but it was a disaster – for the children.
Andrew Denton: On one level, I understood what Luc was saying. But on another, as a parent, I struggled with the thought of my child choosing euthanasia when they had a non-terminal illness. I asked Lieve if she found it hard to reconcile that thought too.
Lieve Thienpont: Of course, of course. I also have children. It must be terrible, but I saw now parents – more than one, that they are saying, “Losing your child is terrible, but looking at your child in pain, year after year, if it’s possible, more painful”.
Andrew Denton: On a little laneway in the country, a couple of hours out of Brussels, lives a man who carries a sadness so palpable, it is as if you can reach out and touch it.
Pierre Pol Vincke has a special insight into what is meant by unbearable and untreatable psychological suffering. His daughter, Edith, committed suicide at the age of 36, after 18 years of just such suffering; on a scale that is frankly very difficult to imagine.
As we moved away from the buzz of the garden bees and into Pierre’s lounge room, we were enveloped by a profound and gut-wrenching silence – the silent hell of a father’s world, beginning when his daughter was just 17 and became anorexic.
Pierre Pol : My daughter didn't eat any more and she lost her kilos. From a nice looking young girl she was like a skeleton, and she didn't realise she was a skeleton. During some years my wife and me we tried to help her in anorexia, but we didn't realise that she needed help for something much worse than anorexia.
Andrew Denton: Was she able to explain to you or even to herself why she didn't feel good?
Pierre Pol : No. And that made her anxious. Because she told us regularly she felt as somebody else inside of her was deciding. She knew that a lot of things of self-mutilation she was inflicted herself, she knew that it was bad, but she could not resist the temptation of doing it.
Andrew Denton: As she grew older, Edith’s drive to self-destruction became overwhelming.
Pierre Pol : She first tried to suicide herself by cutting in her hands. She was 18 years old. At this time she sometimes told us that it was really difficult to stay alive because she didn't find a place in our life. Really quickly she told to psychologists or psychiatrists that she wanted to die. She asked me to help her die. It is really difficult to hear your own daughter asking you something like this, and she was then 18, 19 years old.
Andrew Denton: I could think of no harder thing than to be asked by your child to help them to die. What do you say in a situation like that?
Pierre Pol : Well it's really difficult because as a father you think you have to assist your children in a lot of difficult situations. I was educated in Christianity and I knew about Abraham but I was not ready to do what Abraham was asked to do with his son. I was not ready to help my daughter die.
Andrew Denton: In desperation Pierre Pol and Edith went to specialist after specialist.
Pierre Pol : A lot of psychiatrists and psychologists we met tried to catalogue her somewhere in the known psychological or mental illness, but no-one succeeded in this exercise. Then when she heard about the law in Belgium who allowed euthanasia in some specific cases, she read it and she told us, “I am eligible for euthanasia in Belgium,” but most of the medical doctors who followed her didn't follow her in her question.
Andrew Denton: So did you genuinely explore with doctors whether or not Edith could undertake euthanasia?
Pierre Pol : I made a big mistake, because maybe I thought Edith was too ill to really understand what was written in the law. I had a stupid behaviour because I was full confident in the medical doctors I met. Maybe I had to study further the Belgian law about euthanasia.
Andrew Denton: So you thought it didn't apply to Edith?
Pierre Pol : It could apply completely to Edith but in a lot of cases it is difficult for some medical doctors to allow that they can't help the patient any more. Then they say it's not allowed, but legally Edith was right.
Andrew Denton: How many doctors did you and did Edith talk to about euthanasia?
Pierre Pol : Edith did something around 20 and me maybe 15.
Andrew Denton: And they all said, “No, this is not right for her”?
Pierre Pol : They all said, “No, it's not lawful”.
Andrew Denton: So between you, you saw maybe 30 doctors. As this went on and on, did this make Edith more desperate?
Pierre Pol : Desperate in the sense that she spoke lesser and lesser about euthanasia, and maybe as parents we interpreted this as she was going better, but I think she didn't want to speak about euthanasia anymore because she was planning a suicide, and trying to euthanise herself.
Andrew Denton: How many years between her suicide attempt when she was 18 and when she did kill herself – how many years took place?
Pierre Pol : Eighteen. Eighteen years of heavy psychic sufferings, suicide attempts a lot, auto mutilation with razor blades, with fire, with cuttings everywhere on her body. It’s difficult to understand how it is possible. She told me that when she was cutting in her flesh it helped her feeling better because her psychic suffering was that heavy that in cutting or burning her own flesh was giving her the impression she was healing from her psychic sufferings.
Andrew Denton: It is extraordinary what the human brain can do. You said she made more than one suicide attempt. Is that right?
Pierre Pol : Yes. More than one. She was really angry, because she didn't succeed. The last weeks before she succeeded in suicide herself we phoned a lot to the doctors who were following her because she was in a psychiatric institution. We told them she is not going well and she is preparing something, and she cut her throat in the psychiatric institution where she was.
Andrew Denton: Had there been a genuine conversation about euthanasia with yourselves, with the doctors, what difference do you think that might have made?
Pierre Pol : The difference I only understood it afterwards – we are convinced that Edith asked a legal question and that maybe it had been important to discuss with her about euthanasia versus suicide, instead of trying to avoid this discussion. It's really important because when you speak with psychically suffering people about their question for euthanasia, more than 50% of them choose to stay alive. They find a kind of medication that their suffering is recognised and then maybe death is not a problem anymore, because they could receive help to die. In the case of Edith, more than 10 years medication, psychiatric institutions didn't help her. Most of the doctors knew she was incurable, that medicine couldn't help her anymore, so maybe it's time now to start avoiding this kind of discussion and to speak clearly with some patients about their suicides or their euthanasia. As a father, it's really difficult to read a police report describing what's happened to your daughter when she suicide herself. It's horrible. When I discuss with parents of people who are euthanased it seems so peaceful. Difficult to use words. It is beautiful, because they can say goodbye to each other.
Andrew Denton: For all your deep love for your daughter and care for her, is there a sense that you failed her even though you didn't know that you were failing her?
Pierre Pol : Yes. My feeling is that I failed somewhere because I cultivated my hope without understanding her despair. I thought we can solve everything in life with love or with parental care. But it is not true. There is a limit even to love and even to parental care.
Andrew Denton: Have you been able to forgive yourself?
Pierre Pol : Not every time. I sometimes still have doubts, but those doubts are especially – the way I communicated to my daughter. Maybe her sufferings were that much I didn't always spoke to her as if she was a healthy young woman, and she was indeed a healthy young woman with an illness. Her brains functioned fantastically good, she knew what was happening, she realised that with all those medicines she was only a shadow of the beautiful clever young woman she used to be. She realised that she was already dead, and whenever she asked for help for euthanasia the answer of the doctors was to condemn her to stay alive.
Andrew Denton: Do you understand why people struggle with the idea of euthanasia for people of a young age?
Pierre Pol : Yes, I understand. But the only advice I can give to those people who are hesitating – and I understand; it is really difficult – they should discuss directly with people in psychological sufferings. Not with the doctors, not with the parents of those people, but with the people in psychiatric sufferings. In Belgium every day – six suicides a day for psychiatric sufferings, and if you listen correctly to what those people are experiencing and if you communicate correctly about their dreams of suicide or euthanasia, maybe you can save more than 50% of them.
Andrew Denton: In a way no doctor ever could, Pierre Pol had described for me the true shape of the monster they were dealing with. Not depression, or psychosis, as I understood them, but something far deeper, darker, and unyielding.
Laura may only have been 24 but she, too, had been in treatment for years for extreme depression and complicated psychiatric disorders – since the age of 12 in fact. This had manifested itself in suicide attempts and other, consistent, acts of self-harm.
A few months after leaving Belgium, I found an interview with her online, conducted by a documentary maker working for The Economist magazine. The scars on her arms clearly visible, this is how she described her life:
Laura: I feel like there’s a monster behind my ribcage constantly trying to get out. Cutting makes you think, “I can cut it down”. And banging your head on the wall makes you think, “I can beat it”. But even slamming and hitting won’t stop it. That’s the hardest, picking yourself up every time, when you know 5 minutes later it’ll be back and you have to go through it all over again. That’s what makes it so unbearable.
Andrew Denton: Lieve, when you talk to Laura and she expresses “This life is not for me,” what do you say?
Lieve Thienpont: Well every time I see her or mail her or I hear her, we speak about life, and maybe, maybe there’s more possibilities to try something more, and that’s of course really my wish – that even now she can find a way out of her pain by another treatment, but at the same time I know she wants quietness or she wants the possibility to die in a good way and it’s like balancing those two. I want to offer her another way to live, and at the same time I want to offer her the peace so that she can die in a soft and good way.
Andrew Denton: Is there a concern that other young people who may be struggling with depression, they learn about a case like Laura's and they begin to think towards euthanasia as a solution to their problem rather than looking elsewhere?
Lieve Thienpont: Yes, but I hope so because it's like I said before, it's an opportunity to speak about their wish to die. Some of them already wish to die when they were very young. The first suicide attempts, they were very small already, very young already.
I always saying speaking about euthanasia is not dangerous. Not to speak about it is dangerous because then they are preoccupied only with the suicide thoughts. If you can take them away, there is more space and time and energy and quietness to look at their life.
Andrew Denton: It is a paradox I had never considered before: how embracing the prospect of death can hold out, instead, the possibility of life. In her interview, Laura confirmed that the offer of a gentle death has saved her from a violent one.
Laura: Without the option of euthanasia, years of suffering would have been compounded by a gruesome and lonely death. I would have killed myself.
Andrew Denton: Even so, I wondered if Lieve in any way doubted her course.
I respect the care and thought with which you go about your work but it feels to me that you are also on a very high tightrope. Are you certain that psychiatric science knows enough to make a call on life and death?
Lieve Thienpont: It's not a science who decides, I think. It’s the quality of life and the energy left that decides if people can go on or not. They decide, not the science.
Andrew Denton: Less than 2% of all deaths in Belgium are by euthanasia. In 2013 97% of those were people with terminal or chronic physical diseases; 3% were psychiatric.
Within the Belgian medical community there is ongoing debate about how best to deal with such cases. Some feel strongly that euthanasia is not appropriate. If you’d like to know more, head to the episode page at wheelercentre.com/betteroffdead .
For me, Laura’s story was, by far, the most confronting thing I found on this journey. It took me a long time to understand the true nature of her unbearable suffering and even longer to appreciate how the people at ULteam were using euthanasia as a way of encouraging her to live.
You may hear what I have heard and still think that their approach is wrong. But I came away with a respect for what they’re doing.
To truly seek to understand the unbearable suffering of others, to walk beside them into the darkest places searching for even a glimmer of light, and – should their suffering prove beyond endurance or treatment – to promise a loving way out, was, to me, a remarkable display of rational compassion.
I couldn’t help but wonder how many people in my country, suffering in this way and desperate for relief, might have been kept alive by the same approach.
And Laura? She had nominated last August to end her life by euthanasia but, as the day approached, opted not to. She’s in treatment still and – in her own words – is “holding her breath for the future”.
Andrew Denton: Next episode I travel across the Atlantic to the last place I expected to be discussing assisted dying: the state of Oregon in the God-fearing US of A. Not only do they have a law to help people die, but it’s the longest-running one in the world. How did something so controversial become law in such a religiously conservative country? And, 17 years later, why is there no controversy about it at all?
[SONG ‘FORTY-EIGHT ANGELS’ BY PAUL KELLY]
Episode 9 - Why should one church decide for all of us? Death with Dignity in Oregon
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Brittany Maynard, YouTube: I can’t even tell you the amount of relief it provides me to know that I don’t have to die the way it has been described to me that my brain tumour would take me on its own.
Andrew Denton: This YouTube video made by a young Californian woman dying of brain cancer has been viewed more than 11 million times. Its impact has been profound.
Brittany Maynard: I hope to enjoy however many days I have left on this beautiful earth and spend as much of it outside as I can surrounded by those I love. I hope to pass in peace.
Andrew Denton: Brittany Maynard was just 29 when she left her home state of California to go and live in Oregon, a state where the world’s longest running assisted dying law offered her a choice about her final days. Incredible to think that a religiously conservative country like the USA could give rise to such a law. Even more incredible, is that, 18 years later, more and more states are adopting it. Oregon’s Death with Dignity law re-wrote the map about assisted dying in America. Its success has left opponents with a big problem: how to discredit something that even its critics acknowledge, works?
Andrew Denton: My name is Andrew Denton, and you’re listening to Better Off Dead.
[AUDIO EXERPTS FROM 1996 NEWS STORY ABOUT NT EUTHANASIA LAW]
Andrew Denton: It’s 1997 and, in Australia’s Northern Territory, the world’s first experiment with a euthanasia law has just been snuffed out by a conservative federal government.
But across the Pacific, in the US state of Oregon, an end-of-life law is coming into effect after a long and bitter battle.
How it came to be, in religiously conservative America, stands as a master class in public policy – one that set the template other US states have since followed.
So I’ve decided to come to Oregon to find out how their law works, and to meet the two men who played pivotal roles in getting it onto the books. They are the Odd Couple of America’s assisted dying movement – one a careful lawyer, precise of word and deed, the other a retired British journalist, once dubbed “the Anti-Christ” because of his refusal to be quiet about how people really die.
Eli Stutsman: Well you have in this area, when you attempt to pass Death with Dignity reforms, you have a perfect storm of law, medicine and faith.
Andrew Denton: First, Eli Stutsman, attorney at law, with offices in Portland, Oregon, a primary author of Oregon’s Death with Dignity Act, and its lead political strategist.
Eli Stutsman: Really what I did at the time was I took an issue that was on the political left of the spectrum and I drug it to the political middle. It was a painful fight to get it there. Nobody is going to win anything on any issue as long as that issue is out on the ends.
Andrew Denton: What drew you to the issue?
Eli Stutsman: Undergraduate studies in religion. In an ethical course there was a case study that involved a patient, and he was end-stage renal failure, on dialysis, made a decision to withdraw life-support, and having made that decision, he was going to accelerate or hasten his own death, and the next question for him and of course the case study in the textbook, if he has made a decision to end his life by terminating support, why can't he go one step further and hasten his own death? And I thought that was a very fair question, and by the end of the case study the physician had convinced the patient that the patient was not only wrong but it was the wrong question to ask. And the patient in that case study actually apologised for having raised the question. And I took issue with that.
Andrew Denton: The spur for Eli Stutsman to fight for assisted dying was ethical. For expatriate English journalist Derek Humphry, it was completely personal.
Andrew Denton: Hello, Derek. Hello, Andrew Denton. What a beautiful part of the world! I've never been here before.
Derek Humphry: Yes, I thought you'd enjoy it.
Andrew Denton: Derek lives at the end of a road deep in the woods outside Eugene, Oregon.
This is what in Australia we call a man cave.
Derek Humphry: I call it the engine room.
Andrew Denton: Now 85, for 40 years Derek has uncompromisingly fought for laws to help people die more humanely – a passion driven by the lingering death of his first wife, Jean.
In 1975, after an exhausting and painful battle against breast cancer, Jean asked Derek to find the drugs to relieve her of her torment. Helped by a friendly doctor who insisted his name be kept out of it, Derek complied. Finally one morning, as Jean lay wracked in pain at home, she could take no more.
Derek Humphry: She was a very blunt spoken woman, a Lancashire woman, very straightforward. And she said, “I’ll die at one o'clock today” – straight like that. And we spent the morning together talking and playing our favourite music and going over the marriage and a couple of rows that we'd had. And she gave me permission to marry. And she said, “I’ve said to the boys they must accept whoever you choose to marry, if you do”. I was amazed when she said that. I burst into tears. [Laughing] Anyway we got to one o'clock and I thought, “If she doesn't say anything, then I'm not going to do anything. It's her decision”.
But at one o'clock she said, “Look at the clock – go and get it,” she said. So I went and got the drugs and mixed them into a cup of coffee, put in lots of sugar, in a mug, her favourite mug, brought it back, and put it on the bedside table. She said, “Is that it?” I said, “Yes, if you drink that cup of coffee, you will die”. Then I got on the bed and gave her a last hug and a kiss and we said goodbye, then I got off the bed and sat beside her so that she could drink properly, and she picked up the mug and gulped it all down. No hesitation whatsoever. And she just had time to say, “Goodbye, my love,” and she became unconscious. It worked that fast; It was very powerful. And I sat there in pure astonishment at her courage and the way she’d worked things out.
Andrew Denton: An investigative journalist for London’s Sunday Mail, Derek knew he’d broken the law and could be up for 14 years in jail. But as he checked the records he discovered that otherwise law-abiding citizens had been doing the same thing for years and not been sent to prison, even though they’d been dragged through the courts on a charge of assisted suicide. Sensing an injustice, Derek moved to California and set about writing the book that would turn the euthanasia debate on its head. Published in 1991, it was called Final Exit.
Derek Humphry: Well the universal truth is that everybody wants to die quickly and peacefully, but everybody wants to live as long as possible, of course, but the end comes for us all, and people think about “How shall that then be for me?” Now the vast majority of people do die in an OK manner, but there's some – I would say 10% of deaths are slow, undignified, distressing and those people want to know, in an intelligent fashion, how they can accelerate the end perhaps in the presence of their family and friends, non-violently, peacefully and quickly.
Andrew Denton: Derek was warned the subject was taboo and that a book advising people how to die would be abused. No publisher would touch it. So he published it himself.
Derek Humphry: And first of all nobody noticed it but one day after about six months, the Wall Street Journal did an article, on its Friday page, about Final Exit and who liked it and who hated it and who thought it was appalling. The next week it was a bestseller across the country. I kept on having to print 100,000 every week. I was staggered. I was called anti-Christ of the month and things like that, but I didn’t mind and it stamped up the sales.
Newsreader: The jury did not convict Jack Kervorkian of first degree murder, they opted for the lesser, second degree, charge. They also convicted him of illegally delivering a controlled substance, Phenobarbital without a medical license.
Andrew Denton: By 1994, Eli and Derek found themselves working side-by-side, campaigning for an assisted dying law in Oregon. Similar proposals had already been defeated in Washington and California, not helped by nationwide publicity for Dr Jack Kervorkian, dubbed “Dr Death” by the media for helping over 100 patients to end their lives.
Eli Stutsman: He was clearly a maverick and didn't recognise any limitations, and ultimately went to prison for it.
Andrew Denton: Eli Stutsman.
Eli Stutsman: He was a physician, but he didn't care for patients and certainly not terminally ill patients, and so he didn't speak with any credibility from his experience as a physician. And there was a side to him that was a bit odd, and then if you further understand that he had created a machine that suspended bottles from a small rack with an IV needle into a patient's arm. A patient could trigger the machine and bring about their own death. It was illegal, so he would do this, for example, in the back of a Volkswagen van in a public park. We would never do that as a matter of public policy. That's no way to practise medicine.
Andrew Denton: Derek Humphry had strong memories of Kervorkian too.
Derek Humphry : He phoned up and asked to see me. I'd heard of him. And he came into my office and he said, “I'm starting a suicide clinic. Will you send me the patients to die?” I said, “No”. And he was shocked. I said, “Look, I believe that this is something that's got to be carefully done, ideally in the home with the medical advisers, with family present”. I said, “Getting in a taxi and going to your clinic is going to hold us up to criticism; be ready for abuse”, and I said, “That's not what we are fighting for, I can't act unlawfully with you and at the same time try to change the law”. And he got up and shouted something, “Oh you're a shame, you don’t really believe it!” and stomped out of the office. He couldn't believe that I wouldn't help him.
Andrew Denton: Eli Stutsman saw the bad publicity around Kervorkian as an opportunity to distinguish their campaign from him. Whenever he was asked, he stated that under the law they were proposing for Oregon, Kervorkian would be thrown into jail.
Eli Stutsman: We did not repeal the assisted suicide law in Oregon. It is still a crime to commit assisted suicide. What we did was we created and passed a public policy that in narrow circumstances involving a dying patient that you might be able to allow the patient to hasten his or her own death. That’s very different than what Kevorkian did.
Andrew Denton: The Death with Dignity Act that Eli, Derek and others put to the voters of Oregon was based on very careful research into exactly what was happening with assisted dying in that state.
Eli Stutsman: The breakthrough was when we realised it was already happening and how it was happening. Then the task was to reduce it to written policy.
Andrew Denton: The Oregon team closely studied the failed attempts to introduce legislation in other states.
Eli Stutsman: The proposals in Washington and California would have allowed lethal injection or euthanasia. Advocates aside – I didn't discover one patient, one family member that wanted that. What I discovered was patients that were already obtaining medications on their own, sometimes with the help of their physician, sometimes by hoarding, but they were doing this, they wanted information, sometimes they were getting the information too. And that's what people really wanted. Once I understood that, and we had that experience uncovered, then we could write a law around it.
Andrew Denton: Inside the camp there were divisions over whether a patient should drink life-ending medication or a doctor should administer a lethal injection. Derek Humphry argued for injection.
Derek Humphry: I was wrong and he was right in the debate we had almost 20 years ago now – that doctors, certainly American doctors, don't mind this indirect way of ending the patient's life but they don't like the idea of injection of lethal substances into their patient in front of them.
Andrew Denton: It was critical to get this right – because if doctors opposed it, then that would mean the end of Oregon’s bill.
Leigh Dolin: As a group of doctors, the Oregon Medical Association is not a particularly leftie group. Doctors are pretty conservative.
Andrew Denton: Leigh Dolin had just been elected President of the OMA, Oregon Medical Association, when the debate engulfed Oregon’s doctors.
Leigh Dolin: So when we began the discussion about assisted suicide my prediction was that the OMA was going to come out against assisted suicide because I thought it is a conservative organisation. The people that introduced the resolution gave their initial comments and then we had, basically, a two and a half hour heartfelt discussion. And doctors who were pretty conservative politically started getting very personal. They talked about my mother when she was dying of cancer. I had this patient who I really loved, and his suffering was unbearable to watch. What they really said is that this is not an easy decision.
You can't just say, “Well, we are supposed to support life, at all costs,” because doctors know that isn't true. Relieving suffering, yes. But the issue of assisted suicide turns out, most of the doctors felt it was more complicated.
Andrew Denton: Leigh himself had reservations.
Leigh Dolin: I talked to the chief petitioner for the ballot measure and I said to him, “You know, doctors have been doing this for years but just not documenting it, why do you want to bring this out into the open? You’re just going to cause a lot of trouble. There are going to be people yelling and screaming at each other”. And he said, “Well, this is the right thing to do. It is not right to be dishonest and secretive. If we believe this is the right thing to do, then we should be open about it and we should discuss it.” And after two and a half hours of this discussion it became clear that we would not reach a consensus on the issue. And what we decided is to take no position.
Andrew Denton: What influence do you think that neutral position had on the law eventually being passed?
Leigh Dolin: I think it has a major position. I think the fact that the Oregon Medical Association, which of course people would think would have the expertise on the issue of dying patients. The fact that we took a neutral position on it meant it wasn't necessarily wrong to do it. I guess that is what it meant. The voters said, “Gosh, the Oregon Medical Association is not telling us this is a terrible thing to do. We need to think about it, we need to make our own decisions”. What the OMA was saying is the decision about assisted suicide is not a medical decision; it is a moral decision. And this kind of moral decision is not something where doctors have the answer.
Andrew Denton: For Oregon doctors, this was uncharted territory. Even those who supported a law had concerns: Would the law protect them if they helped a patient end their life? Would there be anonymity? What if you gave the medicine and the patient didn’t die?
Leigh Dolin: So there were all sorts of practical concerns. But once again, I think the doctors who felt it was the patient's right were willing to say that all these practical things can be worked out, ultimately, if we feel that the patient has the right to do this, we need to let the law pass and do our best to work with it to make it work as efficiently and as positively as possible.
Andrew Denton: Eli Stutsman and the rest of Death with Dignity team crafted and re-crafted their proposed legislation, building in safeguards to counter doctors’ concerns and their opponents’ objections – particularly about the elderly and the disabled being made vulnerable.
Eli Stutsman: Well the key factors are that it has to be a competent adult patient and they have to be able to make their own decisions, so no minors, and if you have lost your competency, nobody can make a substituted decision for you. You have to have an attending physician and a consulting physician, both practising in the area of the terminal disease. They need to reach a prognosis – the attending physician that you have six months or less to live, and the consulting physician needs to reach a similar prognosis. The point is we have purposefully limited the Oregon Death with Dignity Act to those circumstances where death is imminent and the patient is acting voluntarily and wilfully and is competent.
Andrew Denton: Derek Humphry explains how the law was designed to protect not only the vulnerable but also doctors and nurses who didn’t want to participate.
Derek Humphry: A person who is disabled or a person who is very old cannot necessarily use this law – not on those grounds alone. They would have to be terminally ill as well as old or infirm. And we have a conscience clause – we put in a conscience clause that doctors or nurses or pharmacists can walk away from this. They need not be involved, and there is no punishment or stigma by walking away from this on your ethical religious grounds or whatever grounds. You can just say, “No, I don't want to be involved in this, thank you”.
Andrew Denton: Other safeguards were built in. Any request had to be made orally and in writing. All other treatment options had to be explained to you. 15 days after the first request, a new, oral, request had to be submitted. And at the end of all that, if all the requirements of the law had been met, the doctor would supply you with a prescription for life ending medication, that you – and only you – could choose to take.
To become law and make history the proposal crafted by Eli, Derek, and others needed to win a popular vote at a state-wide referendum. The opposition was fierce.
Derek Humphry: The opponents said, “People will be flocking to Oregon to kill themselves”. They actually said there will be people dying in the parks and in the restrooms and people who don't really want to die will be pushed to an early death and that sort of thing.
Andrew Denton: Do you remember what their advertising said at the time?
Derek Humphry: That this, you know, is the start of Nazi-type euthanasia and that type of thing.
Andrew Denton: The language was that strong?
Derek Humphry: Oh yes, yes. It got into a very, very dirty fight.
Andrew Denton: Eli Stutsman recalls that one opponent stood clearly above the rest.
Eli Stutsman: Our opponents would like to suggest that organised medicine opposes Death with Dignity reforms, and I can assure you that if all we had to do was fight organised medicine, we’d have almost no fight at all. Our money and the battles that we fight actually come from predominantly the hierarchy of the Catholic Church.
Andrew Denton: Eli’s strategy was to treat the Church with respect, accept their moral objections, and not attack them head on. Research had shown, however, that the most trusted voice in the debate belonged to nurses. That voice was used to powerful effect.
Eli Stutsman: We had a line in one of our paid advertisements that was very simple, and the line was this: “When did we decide to let one church make the choice for all of us?” It was delivered powerfully by a woman by the name of Patti Rosen, who was a mother and a nurse, and she’d helped her daughter die – still, as you can tell, an emotional story for me to tell – and I was there when we produced this political ad. And Patti delivered that line, and we all fell silent – I mean just a hush went over everybody present – it was so powerful. We didn't mention the church by name – we didn’t have to. It was all we needed to do and say.
Andrew Denton: In November 1994 the people of Oregon voted in favour of the bill by 51 to 49%.
Derek Humphry: And then the day after it passed our opponents, the Right to Life movement rushed into court and found a judge, a (INDISTINCT) judge, and got an injunction and stopped it.
Andrew Denton: For three years the legislation was held up in court. In 1997 it went back before the voters of Oregon. This time it was passed by 60 to 40.
Eli Stutsman: The nice thing about this issue is there is truly majority support. I have not seen a survey in any state in this country or any others country surveyed where the citizens, the people had anything less than majority support. There is plenty of room for disagreement. And if those in the majority are modest in what they pursue in their reforms and they are considerate, and they allow the churches to disagree and the physicians to disagree, to opt out and make room, you have a great chance for success.
Kevin Yuill: Oh my goodness. Do we hear about Oregon in the UK? Oregon is the great darling baby that has turned out perfectly and has done so well and Oregon is: “Look, nothing you’ve said has ever taken place in Oregon!”
Andrew Denton: This is Kevin Yuill, an academic specialising in American history, addressing an international anti-euthanasia symposium in Adelaide in 2015. Like many opponents, Kevin finds Oregon to be an inconvenient truth.
Kevin Yuill: My basic line is: Don’t look at Oregon; look at Belgium if you want to see the future of institutionalising a culture of assisted suicide.
Andrew Denton: Perhaps Kevin doesn’t want to look at Oregon because, after 18 years in existence, the facts are impossible to argue. So tightly written is its law, applying only to terminally ill people with six months or less to live, that the number of people who use it is less than half of one percent of all the people who die there. On average, every year, that’s about 100 out of 35,000 deaths – a statistic that hasn’t changed in 18 years, and a nightmare for those who argue the slippery slope.
Desperate for purchase, they seek other lines of attack.
Alex Schadenberg: In fact we have seen a higher suicide rate going up in Oregon, so the reality of the assisted suicide it actually worked as a suicide contagion effect, so when you are arguing that argument, it is assuming that...
Andrew Denton: Alex Schadenberg is a Canadian opponent urging me to examine the phenomenon of “suicide contagion” in Oregon. It is an accusation also being talked up at the conference by former New Hampshire legislator Nancy Elliott.
Nancy Elliott: Suicide contagion is another very good thing to point out to your, you know, committees, and it has worked very well in the States. The statistics out of Oregon are consistent with a suicide contagion. We all know that when Grandma and Grandpa commit suicide, it makes it that much easier for their children and grandchildren to say, “Oh this is what you do when life gets hard”.
Andrew Denton: Litigation attorney Catherine Foster takes it one step further.
Catherine Foster : After Saddam Hussein was hanged, the rate of suicide rose. Young men were hanging themselves. And there is a link between prescribed suicide and regular suicide. Places that have legalised prescribed suicide have seen an enormous increase in deaths by non-doctor suicide. In Oregon the suicide rate has skyrocketed.
Andrew Denton: So have these laws led to suicide contagion in Oregon? Oregon’s State Health Officer is Katrina Hedberg. One of her duties is to report on who uses the Death with Dignity laws.
Katrina Hedberg: The Oregon Public Health Division was assigned the job of keeping track of the data and to issue a report. I give that background because it means that I really don’t take sides in the debate.
Andrew Denton: I put to her concerns about suicide contagion.
Andrew Denton: Something that Alex Schadenberg mentioned was the “suicide contagion effect” – the implication being that in some way the assisted suicide law here had increased or added to the increase of suicide in Oregon.
Katrina Hedberg: So we do track suicide, just like we track Death with Dignity, and suicides in Oregon have been higher than the national rate, but that’s been going on for...decades. We have not seen any change, if you will, in the statistics around rates of suicide in Oregon before or after the Death with Dignity Act took place. So what I would say is that in Oregon when it comes to suicide, the risk factors for suicide include a history of depression, of mental illness, of previous suicide attempts. We know who is particularly at risk – older men who might be widowed, their wife has died; veterans are at high risk of suicide. We have a number of groups, and they’re very different than the people who participate in Death with Dignity, who tend to be equal parts men and women, again the average age of 70, and many of them are married and they have all been diagnosed with a terminal illness by definition otherwise they could not participate. So I would say that there is nothing in our data to show that.
Andrew Denton: Fact. There is no evidence of suicide contagion in Oregon as a result of their Death with Dignity law. But this was not the only opponents’ claim I had come ready to explore.
Mr Schadenberg says there has never been a study that looked at all the deaths and showed you that the law was followed correctly.
Katrina Hedberg: I don’t understand the comment, because we do look at all the deaths in the state of Oregon, and we look at all of the reports from Death with Dignity, and we keep track and we match those, and when it’s a little unclear we call the doctor’s office back up. We have a whole team of people whose job it is to look at death certificates – they’re called nosologists – and to query any of the deaths that look unusual or things that they are not able to discern exactly what the cause of death and they call funeral homes, they call physicians and they make every attempt. So we have a pretty sound system of investigating.
Andrew Denton: To the question of the slippery slope, do you see any evidence of people being coerced, people who are considered vulnerable, such as the elderly or those with disabilities or those with economic issues?
Katrina Hedberg: That’s the other thing we’ve noticed is that it’s not people who are poor or disadvantaged; in fact it is the opposite. Those tend to be people not only who have gone to university or gone to college but actually have graduate degrees – so lawyers, professors, people who are very well educated who are really using this as a choice. So I have not seen any evidence that it has really changed from very well educated, again, average age of 70 years, primarily white and equal parts men and women. There haven’t really been any trends in who has participated over the past 18 years.
Andrew Denton: The more I learnt about the success of Oregon’s law, the more I began to understand the desperate nature of attempts to undermine it. Nancy Elliott again.
Nancy Elliott: The other thing that we point out is when suicide is a treatment option, all care goes down, because in Oregon, where it's legal, they have denied care to patients yet said, “But we will pay for an assisted suicide for you, we will pay for your lethal dose”. I mean that's just the tip of the iceberg, but once doctors say, “Oh this type of cancer – everybody goes for assisted suicide,” they are no longer going to want to give anybody treatment.
Andrew Denton: Has this been the experience in Oregon? Dr Leigh Dolin from the Oregon Medical Association.
Leigh Dolin: I'm not sure why people say that. If anything, it would be the opposite.
The first question is not to talk about assisted suicide but to say, “Well, what have you been taking for the pain? Tell me about it.” Or, “I’m such a burden on my family.” “Well, can we get you help at home?” I mean talk about what the real issues are.
Can we get you a visiting nurse? Can we get you a caregiver during the day? Does your daughter need a break?” So the doctor and the patient are encouraged to have all these discussions about the issues that people have when they’re dying, in order that the question about assisted suicide maybe won’t have to come up at all.
Andrew Denton: What impact has the law had on end-of-life care and palliative care in Oregon?
Leigh Dolin: The silver lining is, I think, that end-of-life care in Oregon, palliative care, has been far better since the assisted suicide law passed. Because patients are empowered, so the patient knows, “I can always bring up this assisted suicide question,” and the doctor knows that the patient can always bring that up, and the doctor doesn’t want the patient to bring it up. So the doctor and the patient are going to really work hard to do a heck of a better job with the patient at end-of-life in terms of comfort and all sorts of things so that the patient doesn’t have to bring up this issue.
Andrew Denton: If the law hadn’t been passed, how would Oregon be different today?
Leigh Dolin: I think we do a much better job because of this law.
It’s done exactly what it’s supposed to, and more. It’s allowed people to make the decision to end their lives when they have a terminal condition without being at the mercy of the medical profession and I think there’s an acceptance even among the opponents of assisted suicide that this is the law, it’s in place, the public has voted twice to approve the law and it’s just part of medical practice in Oregon. It’s just something that patients and doctors are allowed to do.
Daniel Lee : I am Dan Lee. I am the Marian Taft Cannon Professor in the Humanities at Augustana College in Rock Island, Illinois, and I am also the director of the Augustana Center for the Study of Ethics.
Andrew Denton: Daniel E Lee, one of the United States leading ethicists, was – and remains – an opponent of assisted dying.
Tell me about your moral reservations. What are they?
Daniel Lee: They come from a religious perspective. I believe that life is a gift from God – a very precious gift from God – to be treasured and preserved and that suicide, be it in time of illness or in any other situation, is to reject that gift of life.
I see many people who share my conservative views on physician-assisted suicide believing that they have the right to impose their views on other people, and I don't think that's the case.
Andrew Denton: Daniel has studied Oregon’s Death with Dignity law very closely.
Can I take you back to the mid-nineties, when this was first put forward as a proposition – did you believe at the time that it was a law that could be made to work, or were you concerned, as many people are, about the ability to safeguard the vulnerable?
Daniel Lee: Safeguarding the vulnerable is tremendously important, and what I was particularly interested in seeing would be how the vulnerable would be protected and safeguarded in this law. I also had concerns about the possibility of this being on a slippery slope, resulting in things such as involuntary euthanasia without the consent of the suffering individual. But as I saw how the law developed and I read the annual report on the Death with Dignity law put out by the Oregon health department and looked at the statistics, I have been reassured that there are adequate safeguards in the Oregon law to prevent abuses from happening.
Andrew Denton: Yes, you take more than a passing interest, don't you? You look at the statistics quite carefully each year. Is that correct?
Daniel Lee: That is correct, yes. It's an issue that I teach about in my classes and I have written about, so I do have a certain academic interest in the issue. The Oregon law, by limiting this to medications that can be taken by the patient if she or he wishes, places a firewall that keeps you from going down that slippery slope.
Andrew Denton: How do you respond to the suggestion that physician-assisted suicide can pressure the vulnerable into believing that they have “a duty to die”?
Daniel Lee: That is an excellent question. That is also a concern that I've had and one reason that I've been watching the Oregon situation very carefully. In the annual report they always include statistics on the reasons the people give for requesting the lethal medication, and I've watched that carefully to see what's at the top of the list. The top three are “losing autonomy”, “less able to engage in activities making life enjoyable” and “loss of dignity”. Those occur time and again, but the one I really watch for is “burden on family, friends and caregivers”, and that's down the list, with 91% of those requesting lethal medication saying losing autonomy is their major reason. If there is seen to be a perceived duty to die, then I would be very concerned about this, but I don't see that happening in Oregon.
Andrew Denton: What can Australians learn from the experience of Death with Dignity laws in Oregon?
Daniel Lee: I think it's important that Australians look at the record as to what has actually happened. The Oregon Public Health Division issues the annual report. It's readily available online. That ought to be distributed in Australia so that people can see the numbers as to what has happened. It would be good for people in Australia to know more about the Oregon law, with the safeguards built into it, and in particular the safeguard of not allowing lethal injection. When you see those features of the law, then it diminishes the fear of what might happen considerably.
Andrew Denton: And to be clear, for the record, you would say that there is no evidence of the slippery slope in Oregon?
Daniel Lee: That's absolutely correct; I see no evidence of that whatsoever.
Andrew Denton: There is one other thing about Oregon’s Death with Dignity law that comes as a surprise. Even though everyone using it is, by definition, within six months of dying, more than 30% of those who get the medication choose not to take it. I asked Leigh Dolin why.
Leigh Dolin: What the prescription has done is empowered patients. It has allowed patients at the end of their life to say, “This is not the doctor's decision about what's going to happen here; this is my decision”. And this empowerment of the patient, in many cases, in the 30 or 40%, was enough to make them feel OK enough about what was happening to the point where, with appropriate counselling and pain control and palliative care, they didn't really need to take the prescription. They were willing to die a natural death but they were very comforted by knowing that if they wanted to, if they felt that things were becoming intolerable, that prescription was there, and they could do it. So that is what that 30 to 40% is all about.
Andrew Denton: For Eli Stutsman, the success of Oregon’s Death with Dignity law is beyond argument.
Eli Stutsman : Twenty years later, this is the policy that works. It's been passed in Washington, it's been passed in Vermont; we now have a law in Oregon that's more than 20 years old with more than 17 years of experience. It's never been more popular. All the arguments that were made against it have never come to bear. To the extent that our opponents have something to say, they have said it, and they have lost it.
Andrew Denton: Eli measures the law’s success in the quality of life of those who’ve used it.
Eli Stutsman : If you are experienced in what happens here in Oregon, you understand that patients don't rush to do this; they make arrangements to do this, and if they need it, they take advantage of their arrangements, and they typically wait and avoid just the very last part, the most difficult part. And they enjoy life as long as they can, and very intentionally so. They surround themselves with their family and they revisit the things they want to revisit. And then when it gets to the point where the last and most difficult part is there, then sometimes they will hasten that. Other times they will not. Other times they will accept that too. But the point is it's their choice.
Brittany Maynard: I plan to be surrounded by my immediate family which is my husband, my mother, my stepfather and my best friend, who’s also a physician and probably not much more people, and I will die upstairs in my bedroom, which I share with my husband, with my mother and my husband by my side and pass peacefully with some music that I like in the background.
Andrew Denton: When Brittany Maynard moved to Oregon in 2014, stricken with aggressive brain cancer, she was given only six months to live.
She used some of that precious time to create videos calling for Oregon’s law to be taken up elsewhere.
My goal of course is to influence this policy for positive change, and I would like to see all Americans have access to the same health care rights, but beyond that public policy goal, my aims are simple and really do boil down to my family and friends and making sure they know how important they are to me and how much I love them.
Andrew Denton: So powerful were Brittany’s words that opponents scarcely knew how to react. Online, they branded her a coward for choosing to die as she wished. At the HOPE anti-euthanasia conference, they couldn’t even bring themselves to mention her name.
Nancy Elliott: Like I said, half of our states have a front this year, and a lot of it has to do with a young woman in the States – I am sure you have heard of her. I am not going to say her name because I'm not giving her a commercial, but she was co-opted by the opposition and they used her suicide to glamorise it…
Andrew Denton: That’s Nancy Elliott, spreading the love. For Brittany Maynard, having a choice about how she died also gave her the peace of mind to enjoy her final days.
Brittany Maynard: I hope to enjoy however many days I have left on this beautiful earth and spend as much of it outside as I can surrounded by those that I love. I hope to pass in peace.
Andrew Denton: Brittany Maynard’s wish came to pass on November 1 2014. She took the medication in her rented home in Oregon and died peacefully surrounded by close family and friends.
Debbie Ziegler: Good afternoon. I’m Brittany’s momma. She called me Momma, so I continue to go by that.
Andrew Denton: After Brittany died, her mother, Debbie Ziegler, carried her message on to the people of California.
Debbie Ziegler: My daughter was visibly relieved when she qualified for the medication. When she had the medication she took great comfort with assurance she was the sole decision-maker about how much pain she was going to endure. Her beautiful face softened. There was a peacefulness in her gaze. Please help me carry out my daughter’s legacy. Please help me assure that other terminally ill patients don’t have to face what we had to face. This bill will give terminally ill adults in California the option to choose aid in dying, and I thank you with my mother’s heart for doing this.
Andrew Denton: In 2015 the Californian legislature voted in favour of a Death with Dignity law modelled on Oregon’s.
Governor Jerry Brown, a lifelong Catholic and former Jesuit seminarian, had to decide whether or not to sign it into law.
Brown spent some weeks considering his religion and his conscience. He turned to Brittany Maynard’s family and even to South Africa’s Archbishop Desmond Tutu. Finally he put his signature to the bill. America’s most populous state, with 40 million people, became the fifth in America to allow terminally ill people to legally end their own lives.
Upon signing it into law, Brown said this: “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill”. He added: “And I wouldn’t deny that right to others”.
Debbie Ziegler, YouTube: Very near the end of her life, after some news trucks left I made banana pancakes. And the night that we sat eating banana pancakes and looking out the window and the rain driving against the pane she reached for my hand and she said, “Momma, given the hand of life that we were dealt, this is as good as it gets, Momma”. And it was. Thank you very much.
Andrew Denton: The success of Oregon’s Death with Dignity law puts into sharp relief two things: the increasingly desperate attempts of opponents to discredit them, and the truth they don’t want you to see – that this law works, and exactly as intended.
If you’d like to know more head to the episode page at wheelercentre.com/betteroffdead.
Next episode, having learnt how these laws work overseas, I head home to Australia to see how we compare. In Belgium, The Netherlands, and Oregon I had seen how palliative care and assisted dying go together – the ultimate offer of help for those beyond even the skills of the most dedicated nurses and doctors. Without an assisted dying law to guide or protect them, I wonder how Australian palliative care deals with those same kinds of patients.
[SONG ‘FORTY-EIGHT ANGELS BY PAUL KELLY]