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Episode 10 – Neither hasten nor prolong death: palliative care in Australia, part 1
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Nancy: People deal with it with anger, some people deal with it with just acceptance and some are in the middle. Some are angry but somehow they are resigned to the fact that they are going to die. And some people just want to get it over and done with.
Andrew Denton: That’s Nancy, an Australian palliative care nurse. Speaking to doctors in Belgium, The Netherlands, and Oregon, I’d learnt that, in their countries, palliative care and assisted dying are seen as things that go together – assisting a patient to die, the ultimate offer of help for those beyond even the skills of dedicated palliative nurses and doctors. Back home in Australia, the law forbids assisted dying. Without a law to protect or guide them, I wanted to find out how palliative care here deals with those same kinds of patients?
Andrew Denton: My name is Andrew Denton, and you’re listening to Better Off Dead. I should warn you – the next two episodes may make you consider your own last days far more deeply than you ever have before.
When I asked Professor Richard Chye, the director of Sacred Heart Palliative Care Unit at St Vincent’s Hospital in Sydney, if I could spend a week with full access to learn what it is they do, I was upfront with him. I told him I believed there should be a law for assisted dying in Australia – not a subject often raised within their walls, and that it would be one of many things I’d like to discuss with him and his team. To my surprise – and to his credit – he agreed. I started with nurse Therese Compton.
Therese Compton: I have worked at Sacred Heart for coming on – this is the beginning of my 11th year. And I’ve been a nurse since I was 17. I've always had an interest in – I really like looking after people who need care.
Andrew Denton: I walked past one of the wards today and I just noticed a woman stroking somebody's hair.
Therese Compton: Yes.
Andrew Denton: And that was a lovely thing to watch. It felt like a universal thing to see.
Therese Compton: Very much so, yes. I like people's hair to be done. I like people in pyjamas, like, their own clothes rather than a gown. And if they haven't got one, well we find something. I like the person to remain the person inasmuch as they can.
Andrew Denton: I want both my hairs done when it comes time.
Therese Compton: [Laughing] We'll see to that, Andrew.
Andrew Denton: People come to palliative care for many reasons. It might be cancer. It might be an autoimmune disease. It might be renal failure. It might take days. It might take weeks. Patients might even leave and then return. But they only come here because their days are numbered.
That’s what makes palliative care different to any other branch of medicine. The aim is not to cure you but to make you as comfortable as possible as you head into death.
Andrew Denton: Can you give me some idea of the human parade that comes through here – the different lives that you see?
Therese Compton: You see everything from High Court judges to homeless people who have lived in the park for 20 years.
Andrew Denton: I suppose what you also see here is the truth of these people.
Therese Compton: Absolutely. Because you only come here if you need care. You've got to a point where you need your symptoms well managed, and you need some proper care. You need to be reviewed. You need to be managed, and things need to be put in place whereby the end of your life can be quality.
Andrew Denton: It’s hardly surprising that, when people first arrive here, one of their strongest emotions is fear.
Therese Compton: People are afraid for a number of reasons. A lot of them it's their symptoms. They've got pain. They're feeling nauseated. They're exhausted. They're not managing their activities of daily living, so they're anxious about losing their independence. But they are anxious about – you know, the bigger questions of life and “What have I done with my life?” And “Has it all come to this?”
You can pretend for a little while, but reality hits. So everyone has to face that big question, you know – this is it.
Andrew Denton: By day, the palliative care wards are surprisingly full of life: beepers going off, constant chatter, phones ringing, trolleys and staff bustling. But, like the sea at night, in the small hours of the morning it all feels darkly different.
What time is it? It's 1.30 in the morning on a Saturday morning. It seems pretty quiet in here. Is it always this quiet?
Fran: No, not always. That depends on how many difficult patients we have.
Andrew Denton: I’m on the night shift with Fran, a registered nurse and 24-year veteran of Sacred Heart.
Andrew Denton: What is a difficult patient?
Fran: Someone who is climbing out of bed, who is restless, who is jumping all around the place.
Andrew Denton: Do you have nights sometimes where there are multiple patients who are difficult patients, where you are run off your feet?
Fran: Yes, we do, quite often.
Nancy: If you were here last night, we were run off our feet.
Andrew Denton: With her is registered nurse Nancy. She’s called these wards home for 11 years.
Nancy: I got someone trying to get in and out of bed. It's a high falls risk. Then I got someone dying in another room, and I got someone who was quite short of breath and coughing quite a bit last night and needing a bit of attention. So nothing like this, like tonight. It was so busy we didn't have time to sit down.
Andrew Denton: As we speak, I can hear the occasional unearthly moan from somewhere in the ward. It is unnerving and I think to myself: So this is what dying sounds like.
Andrew Denton: Are you surprised sometimes at the tenaciousness with which people cling to life?
Fran: Absolutely, yes. They'll do anything to be here for another day, to see a grandchild who is coming in a week or an anniversary coming up. You can see them pushing to live.
Andrew Denton: Like everyone here, Fran and Nancy have witnessed the extraordinary human moments that occur in the final days of life.
Nancy: Just a couple of years ago we had a young woman here who was diagnosed, obviously, with a terminal illness. She wanted to be married before she died, and we sort of managed to get her that wish. She knew she only had a week or two left, so she brought her wedding forward. She already had a date. Funnily enough, after she had her wedding she deteriorated very quickly. They had their own – just like a hens party in here, but it was just sitting together at the bedside and all that. After the wedding they managed to stay in one room, with the husband staying in there for the wedding night as well. It was lovely. It was like almost a big ceremony for us as well, preparing her for the wedding, making sure that her lines were not going to show out of her dress. She had full make-up.
Andrew Denton: By the lines, you mean the medical...
Nancy: She had some subcut lines, like when we give them medication. We made sure that she had this medication before she goes down so that we wouldn't have to interrupt the ceremony.
Fran: It was lovely. She was only 28 or something.
Andrew Denton: That's a beautiful story, but I also find it kind of heartbreaking.
Fran: It was.
Andrew Denton: The balancing act required to work here – of being empathetic to your patients needs, but of not being overwhelmed by them – is quite something. Even so, it’s not always possible to keep a lid on emotions.
Fran: I find that when people die at night-time and the family are leaving, that will bring me to tears. They give you a hug and say, “Thank you so much”. It breaks me up sometimes.
Andrew Denton: I asked Fran how they help people who are afraid of dying.
Fran: Depends. A lot of people are afraid of being in pain, so we tell them that we can help them with that. They don't want to be alone. We help them with everything.
Andrew Denton: What's everything?
Fran: Everything they need. You know, if they have lost control of bodily functions, we can help them there, but they want to keep control of something else. A lot of people don't want to take morphine, because they think that's going to kill them, but everyone here explains it all in a good way, don't we?
Andrew Denton: I get the sense that that is important for a lot of people – to have some control over what happens at the end of their life.
Fran: Absolutely, because they have lost control of everything else.
Andrew Denton: We’re used to seeing people die in the movies with a gentle sigh or a heroic look. In real life, it’s not like that. The human body breaking down is a complex business.
And I’m starting to learn that words that mean one thing to the rest of us, in the language of palliative care, take on a completely different meaning.
In here, being restless doesn’t just mean you have trouble settling ... it means you are writhing, sometimes thrashing around. Shortness of breath doesn’t just mean puffing when you walk upstairs … it means struggling for every single breath you take, simply while lying down.
Having seen it all, Fran and Nancy know what they would not want for themselves:
Nancy: I think shortness of breath would be my worst nightmare.
It's just that the feeling of suffocating and not being able to breathe is quite scary.
Fran: I think I would like to be knocked out if that were happening.
Nancy: Yes, but what would be your worst symptoms?
Fran: That would be. Not being able to breathe would be the worst thing, yes. But looking after the worst, I don't like vomiting. I hate vomiting.
Andrew Denton: But you're a nurse! You're meant to be good at that.
Fran: It's awful. You haven't seen the vomit here. Some of it's horrible. It's huge. It's just everywhere, and that I don't like to see. But for me, breathing, you're right. Shortness of breath would be the worst thing.
Andrew Denton: It must be very confronting as a nurse when you see a patient who is not responding to medication.
Fran: It is, and sometimes that's the doctor's order. They are not ordering enough, and we have to ring them in the middle of the night to get them to order something, because nothing's working.
Fran: Some people are in excruciating pain at the end, and the family is watching, so we have to get the right medication for them.
Andrew Denton: That's a very difficult situation diplomatically for you guys, I would have thought.
Fran: It is.
Andrew Denton: That's a very diplomatic answer!
Is there a small sense of loss each time somebody dies, or is it the opposite – a sense of “We've done our job well”?
Nancy: Yes, I think it's the opposite. It's just like you've done your job. But there's also sometimes a sense that you feel, when they didn't die a nice death, like you have not achieved what you wanted to achieve by giving them the most dignified and comfortable death, not because you didn't do your job properly but because some symptoms are really difficult to manage, regardless of what medication you use or whatever intervention you try, and they die in that state.
Andrew Denton: Do you ever have patients in that situation ask for help to die?
Nancy: Occasionally, yes. They say, “Why can't I just die now? Why can't it happen soon? How long have I got left?”
Andrew Denton: And how do you respond to a request like that?
Nancy: It's a difficult question to answer, but you just have to give them the reassurance that they are not alone. We are here to help guide them through their last days and give them the assurance that they will be as comfortable as they can be.
Andrew Denton: As Nancy said, you sometimes wish you could do more. Is that also common in your experience?
Fran: It does. It happens, not very often, but there are some for whom nothing works, and it's horrible to watch, yes.
Andrew Denton: I would imagine that is the toughest part of your job.
Fran: It is. When we've got them nice and comfortable and that, that's all lovely, but it's when we can't control their pain or their angst – and a lot of people get terminally restless. It is not nice to watch. They just struggle the whole time, and you do wish you could do something, but there's nothing you can do, really. Nothing works, does it?
Andrew Denton: Do you get people who ask you sometimes, “Please help me to die. I'm ready to go”?
Nancy: Not many.
Fran: No, maybe one or two.
Nancy: One or two, but it's very rare. Maybe it is their understanding that they are here to die, so they don't ask, but there are people who very occasionally would say, “Help me. Just give me something”.
Fran: “I can't stand this. Just give me something,” but, you know, you say, “No, I'm sorry. We can't”.
Andrew Denton: The compassion and skill of the staff at Sacred Heart is something to witness. They are deeply engaged, not just with their patient’s needs, but those of their families as well. To support this, a team of specialists – including dieticians, occupational therapists, psychologists, speech pathologists, chaplains, and physiotherapists – are on standby.
They include people like Ken Webb, who gave up a corporate career because he wanted to do something for the soul.
Ken Webb : I'm 23. No, I’m not. [Laughing] I'm 48, and I am the nursing unit manager.
Andrew Denton: Ken makes sure all the systems are working properly to help care for the 35 or so people who are typically on the ward. He likes that Sacred Heart was on the frontline in dealing with HIV that ravaged Sydney’s gay community in the 80s.
Ken Webb: I liked the contrast of a Christian organisation they do not necessarily agree with that lifestyle, but when some of that group of people became vulnerable and their lives were being devastated, they were in the front of the queue saying, “Come in”. They opened up all the beds – I think we had 100 beds at one stage. I am proud to be associated with an organisation that has that dexterity.
Andrew Denton: Like most of the people I speak to here, Ken is very welcoming if a little wary about my agenda.
Ken Webb: I think one of the interesting things is there has been a lot of suspicion around why someone would be coming up here to rock the boat or be asking at all to rock the boat.
Andrew Denton: What makes Ken different to most of the people I met here is that he is upfront in his support of assisted dying.
Ken Webb: There are two people having this conversation with you, and that is somebody who has a personal belief about assisted dying and then a respect for the organisation that I work for.
Andrew Denton: That’s an interesting thing. Assisted dying, euthanasia – how much is it normally discussed within this profession or within this place?
Ken Webb: It’s not. It’s not proactively discussed, but then there are patients who will ask or relatives will ask, and they will raise it and usually it’s talked down. Like the times I have seen it: “We don’t talk about that here”. Or “That is not an option that we explore,” you know. People are polite about it, but they close it down. Not because we work for a Catholic organisation – my most recent memory of that conversation was at the Prince of Wales. It is just not entered into.
Andrew Denton: Assisted dying is not legal in Australia, so perhaps it’s hardly surprising that it’s not discussed in palliative care. But the fiercest opposition to it, around the world, comes from the Catholic Church, so resistance to it here at Sacred Heart comes, for many, from a very deep place. That’s why I’m all the more impressed at being allowed in to talk about it.
There is no question there is exemplary and extraordinary care here, but there is that percentage of people that can't be helped because people die differently and people are different. How difficult are those sort of cases in a unit like this when they occur?
Ken Webb: My personal views might conflict with – in terms of assisted dying – with the organisation, but I believe in the organisation's mission and values. So I think we do provide dignity and good care and the majority of the time symptoms are managed well. But there are occasions when a symptom isn’t controlled or someone has a rough journey, for whatever reason, you know, and you do think about that.
Sometimes I wish people were unconscious before they were not able to swallow and they started being incontinent, because I mean the loss of dignity involved with losing control of those functions, of no longer being able to nourish and nurture yourself and talk and communicate – I wish people would just be unconscious earlier sometimes.
It is the chronic, long, slow death that can really be awful. There must be a point where you should be able to say, “I have no quality of life, I am now not able to care for myself, not have meaningful interactions with people”. For myself, for my family, for my loved ones, I would want them to be able to exit when they wanted to.
Andrew Denton: You have probably almost defined the moment where, if those people are competent, it seems reasonable that they should be able to request something which means they do not have to die that way.
Ken Webb: Well, to be honest, probably the reason I want them to be unconscious earlier is so I don't have to see their loss of dignity, but also so that I don't feel discomfort about their discomfort. You know what I mean, like if somebody is a very proud person, and they are suddenly required to wear a nappy because they're bedbound, but they have still got all their brain happening, that is when I think it would be better if they were unconscious. I don't have any problem washing someone, being involved in their care and make them feel better about it, but when somebody – it is so horrible.
And I don't think that is a reason to euthanase somebody. And we would never medicate them to be unconscious – just to be clear. Just sometimes it is a relief when they are slipping in and out of or into unconsciousness.
Andrew Denton: The term “death with dignity” is a live one in the debate about assisted dying. Nurse Therese Compton has her definition.
Therese Compton: So, death with dignity is that the person who is dying feels very at home within themselves. All the existential angst is gone, the big questions, the mistakes they've made and the achievements. Everything, you know? All their regrets, they've come home to a place of peace about it. And their symptoms are very well managed – they're comfortable. Very beautiful to see family around, like loving family around. They've come home to a sense of their own spirituality. And so all those things connected is dying with dignity, I think, yes.
Andrew Denton: It’s a loving definition. But if you’re that patient in a nappy, no matter how loving your environment, it might not feel like dignity to you…
Philip Redelman: I think if they are desperately ill I will make them comfortable. I'd like to think that that's what I do well.
Andrew Denton: Dr Philip Redelman is a visiting medical officer at Sacred Heart. He immediately got my attention at the weekly team meeting with his frank way of speaking.
Philip Redelman: Look, I am realistic to know there is a small percentage whose pain we never get control of, there are people who have anguish and things like that, and we try work hard to do it. And I don't mind giving people more and more drugs if that makes them comfortable. I'm quite happy to do those things. I say to people, “If you like, I can offer you medications that may make you drowsy and more peaceful. Would you like that?” But my aim is for their comfort and it is not to end their life. I separate in my own mind my thoughts and it is very clear that I don't believe I have ever prescribed a drug with the intention that this will end their life.
Andrew Denton: Do you think you have done that and unintentionally ended someone's life?
Philip Redelman: OK, hold on. So the drugs I give people I am well aware may end their life, but it is not my intention.
Andrew Denton: Philip has just given a short master class in what is known as the Doctrine of Double Effect – a way of thinking introduced in the 13th century by the Catholic philosopher Thomas Aquinas.
What it means is that if you are tending to someone who is dying, you can give them medication which may have the unintended effect of helping them die more quickly but only if your actual intention is to ease suffering. What you must not do – ever, because only God giveth the hours and only God taketh away – is give them medication with the intention of helping them die. Even if only death will end their suffering – and even if the patient is begging for such relief.
Today, that idea is boiled down into the central tenet of all palliative care: “We will neither hasten nor prolong death”.
I'm fascinated with this and I’m really interested to hear you say how do you work that out in your head?
Philip Redelman: Well, for example, there was a patient who obviously was a doctor. The son was a doctor, who was a neurologist, and she was having a fit, and he was there too. So we wanted to stop the fit so we gave some IV dex– Valium – that's fine. You give 10. That didn't seem to stop it. So you gave 20, which is now getting a big dose without resuscitation equipment. And didn't stop fitting. So then I looked at him, he looked at me and we gave her another one.
Now that is really being a sportsman but you have a high risk that they may stop breathing. But that was never our intention, and so I think you can have – you might say you take risks but you do things for comfort care, with the consequence that I know that sometimes people can die from that. But my intention has never been – I have never drawn up a dose and said, “Give them that,” which I believe would 100% shorten their life – not shorten their life, kill them. I have often drawn up doses that I think may shorten their life but they need it for their comfort care, and that has always been my intention.
I will give everything to relieve their suffering. Not to be mean. I would take the risk for them that they might die, fair enough, but I wouldn't hold back saying with my thoughts, “Oh I might kill them”.
Andrew Denton: It's such an interesting Chinese wall that you build in your own head.
Philip Redelman: Well, mate, we do. That's the only way we can survive too. That might be how we think and that's what we do.
Andrew Denton: What does this mean in practice? Because people die differently it means different things.
For most patients in the expert hands of a palliative care team, medication delivered with the intention of easing suffering, but not to hasten death, is sufficient. Their pain is controlled, nature takes its course, and they die “a good death”
For a small number of patients, with particularly difficult symptoms to manage – agitation, existential distress, shortness of breath – the only way their symptoms can be controlled is by terminal sedation, a slowly-induced coma which, if managed right, you will not wake up from. It has been dubbed “pharmaceutical oblivion” and even this can’t address all suffering.
And for that ‘small percentage’ whose pain, as Philip said, they can “never get control of?” Therese Compton.
I have no question that you do everything you can to manage pain, but not all pain can be managed.
Therese Compton: That’s right. That’s right.
Andrew Denton: Even Palliative Care Australia says that.
Therese Compton: Yes, that is right.
Andrew Denton: When you reach those cases and there is a limit to how much pain relief you can give – because you do not want to be intentionally ending someone’s life – how do you deal with that?
Therese Compton: Dr Chye would tell you that that is probably only about 4% of pain that you cannot manage, and I have only seen that in Sacred Heart about three times in 10 years – and that is difficult. It's extraordinarily difficult, and you feel at your wits end. It is difficult, yes.
Andrew Denton: That small number – 4% – of people whose suffering is beyond the reach of even the best palliative care can offer, squares with the numbers from overseas, where those helped to die make up a tiny percentage of the population. In Australia, we offer that 4% nothing, primarily because the law forbids it – but also because a religious idea from 800 years ago still informs our medical practice. Yet as Belgium, a predominantly Catholic Country, has shown, it is possible to find a way for 13th century religious thinking to sit alongside 21st century medicine.
Andrew Denton: I spoke to a beautiful man in Belgium called Arsène Mullie, who is a senior palliative surgeon there – physician, and their euthanasia laws came out of their palliative care system, and he said his philosophy is: “If the patient sees there is no solution and I as their doctor see there is no solution other than death, how can I not help them?” Why is it not possible to have that philosophy in practise here?
Philip Redelman: I just see that as murder; that's all I can say. I wouldn’t be part of that, I just couldn't be part of that.
Andrew Denton: Even at the patient’s desperate request?
Philip Redelman: Yep, that's right.
Andrew Denton: Palliative Care Australia acknowledges that there are some patients who persistently and rationally request a hastened death. They say the numbers are few. Beyond the law, Philip Redelman offers another reason why this might be.
In your experience, how common is it that people request a hastened death?
Philip Redelman : Look, you have to understand that it goes something like this in the hospice – you meet people and they say, “I wish it was over tomorrow”, and they say, “But you wouldn't do that anyway”. I've already got my excuse before I even open my mouth.
Andrew Denton: That is true though, isn't it?
Philip Redelman: Well it IS true. We don't do that. Once you come into hospital you lose control; you can't do anything about it. We are in a unit where we see 50 patients. Last week it was exceptional – there were four; normally it is one or two, so it is not a high thing that we see, but there might be a bias in it. Already they're thinking about that we won't do it, so why bother wasting their breath?
Andrew Denton: Why should a competent adult who is dying who requests help to die quickly be subjected to a slow death?
Philip Redelman: I guess maybe it might be because the doctor isn't going to do – you know, shorten their life in a way. I just – I guess I say in some ways that's their destiny. Your number’s up, your number’s up. I'm sure I can tell you of cases where within that slow death there was good came out of it, even though I would never – kind of it's hard to rationalise that, but I have seen families pull together, and it has been good for the families. But still I understand that it always is a slow death. It is just as hard sometimes for the doctors to go in each day and you think, “How can this person still be alive today?” But that is how it is, and I'm not going to change the status quo.
The people I am thinking about are the people who just get weaker and they lapse into a coma but they don't die straight away,
You shouldn't colour it with saying they had great pain and things like that, because that's not good.
Andrew Denton: No, no, no, I'm not suggesting all patients.
Philip Redelman: Can I say – I don't think it's the patients that are suffering. I think they are unconscious.
Andrew Denton: That is certainly not the testimony I have had.
Philip Redelman: Isn’t it? The most problems I get is with the families. They say, “If it was a dog, you would shoot him,” and it is just that the family are so distressed that this person keeps lingering on.
Andrew Denton: I don’t doubt, for one second, Philip’s position. Ninety-nine times out of 100, if I were dying, I would want him in the trenches with me. But if I were that 100th person? Part of that 4% whose suffering they can’t get hold of? What’s it like to be one of them?
Spencer Ratcliffe’s partner, Deb, was 50 when she was diagnosed with adeno carcinoma and, later, the lethal lung cancer, mesothelioma. After 43 cycles of chemotherapy, her fight for life led inevitably to palliative care, at another hospital in NSW. But in Deb’s case medication was no match for the searing pain of dying.
Spencer Ratcliffe: I'll give you an example of one night which was probably in the last 10 days of her life when I was on night duty, so to speak, with her. The doctors can only administer, as you would know, morphine – certain amount over certain hours otherwise that can put the patient to sleep permanently, and obviously that's not allowed. So as much as the patient may want that, the doctors are understandably – and nurses – scared stiff of overdosing their patients. The pain was getting so intense on this particular night that Deb sort of called out to me and said, “Spencer I need to walk. I must walk. I've just got to do something” We walked around the corridors of this hospital for six hours until she was allowed to have more morphine and during those six hours – I've probably still got the marks – her nails were clawed into my back through sheer hell.
We just walked past doors wherever they were leading into, you know, utility rooms, and she'd just scratch at the door. She had to do something to alleviate, the horrendous pain she was in. I've never seen pain like it. I've been a journalist for 49 years; I've seen people in pain all over the world in wars and whatever else. I have never seen anybody in such pain that she was in that night.
Andrew Denton: What kind of pain relief did you ask for? Did you speak to the nursing staff and ask for help?
Spencer Ratcliffe: Constantly, constantly. That little red buzzer that you press, my finger was on it almost all the time, and of course they are busy people, the nurses, especially on night duty, so I was forever walking out to the nurses’ station looking for nurses, searching for them.
Andrew Denton: Why were they reluctant to provide extra pain relief?
Spencer Ratcliffe: Because they were scared that they would overdose her.
Andrew Denton: Did they say that directly when you asked them?
Spencer Ratcliffe: They said we can only – we're not allowed to give any more for another two hours and 14 minutes or whatever. It's all written down on the chart. "Why not?" I'd say. “Because that's the amount,” the doctor says. “We're not allowed to give any more than that.” “Why not?” “Because it's the legal limit that we're allowed to give.” She was only allowed a certain amount every hour or two hours or whatever.
But because the pain just keeps growing and growing and growing, but the amount of morphine grows too but not in accordance with the pain. It's very hard to measure that, but you can tell when someone's screaming in pain and they're just crying. “Please can she have some more?” “No”. I said “How can you just tell me that? How can you sit and watch her in such pain and tell me she can't have more morphine?”. “Because the doctor says I can't”.
Andrew Denton: Did you ask directly for them to do something more?
Spencer Ratcliffe: Yes, I did. I asked directly one night to the head of palliative care. I took him aside and I said, “Look, this is crazy. You can see the pain she's in. What can you do to help her?” is how I worded it, because I knew how delicate the conversation was. “We can do no more than we are doing, Spencer”. And I said, “You know, what are we supposed to do? Just sit and watch her scream herself to death in pain?” and he said, “Well we're not allowed to do any more. Euthanasia is not legal”. And you just shake your head and go, “What the hell can you do?”
Andrew Denton: Did she at this time express a desire to be put out of her pain?
Spencer Ratcliffe: She did. She did. She said, “Spencer I don't want this anymore”. And that's when she said, “Can you find out for me what's necessary to take?” and I did. I said I had it and she said would I help her, and I said I can't do it. I just couldn't do it.
Andrew Denton: Why couldn't you do it?
Spencer Ratcliffe: Because I loved her. So where's that line between loving someone so much to put them out of pain and loving them so much that you can’t put them out of pain. For three years I'd thought about it, but when you get there it's a different thing. It's a different world entirely, Andrew, and I still will probably never know whether that was the right answer or the wrong answer. But what it did make me feel was everybody – every doctor in the hospital knew she was dying. She was in the room where you go before you die. Should a relative be left to do that? You know do you put a paper bag over someone's head? Do you inject them with something? Do you shove tablets down their mouth?
Andrew Denton: How hard do you think it is for nursing and medical staff in that situation to see somebody clearly in excruciating pain but the rules tell them they can't help them, much as they need it?
Spencer Ratcliffe: I think it must be horrendous for them. I would think they must go home at night and never bloody sleep. And all they want to do is perhaps help, but they can't. They've got their hands tied behind their back because of the law.
Andrew Denton: With days left to live, Deb demanded to leave the hospital so she could die at home. As I listened to Spencer’s anguished retelling of Deb’s last days, I thought of the way they help people die in Oregon – the way, I had increasingly come to believe, we should adopt here – which is where someone like Deb is legally prescribed life-ending medication that they can choose to swallow or not. No doctor needs to be involved at the end. It is entirely the patient’s choice. I asked Spencer if he thought that would have worked for Deb.
Spencer Ratcliffe: Absolutely. Far better. If she'd been able to take a drink that could have put an end to it all, I have no doubt she would have done so. I have no doubt at all.
Andrew Denton: So why is the acceptance I found within the medical profession overseas – that palliative care and assisted dying can work together – so hard to find in Australia? Perhaps it is partly to do with the information they’re getting. I asked Ken Webb if there was any understanding of what happens in places like Belgium or the Netherlands or Oregon.
Ken Webb : From a personal perspective I thought I knew a little bit, a bit, and then talking to your producer, Bronwen, I realised how little I knew. In general I think we are informed by media and sort of the very dramatic situations of someone having treatment removed and that somehow being construed as euthanasia, and it is all that sort of stuff that informs our knowledge, so I don't know.
Andrew Denton: If you want to take the most conservative example – Oregon. The conditions are you have to be terminally ill with six months or less to live, in intolerable pain. Two doctors have to agree on that, you have to make an oral and a written request, you have to have all your options discussed with you – palliative care, all the other options – plus you need to indicate that you fully understand what it is that you're asking for. Then 15 days later you have to reapply for that process, and then if the doctors agree that you meet the medical and all the conditions, then and only then, will you be written a prescription for the medicine, which is entirely up to you to take, and 40% of people that are given it don't take it, which tells you a lot. The percentage of people who die in Oregon, to whom this law has applied in the 17 years it has been going is less than 1%. It has never changed.
Ken Webb: Wow! I didn't know that. I mean that is what I assumed would happen. When you talk to people about having the option it is about having the option, not about taking it. And from what you’re saying people don't necessarily go there.
Andrew Denton: Well ironically they have discovered that almost the greatest benefit of assisted dying medication is it is in itself palliative. It removes anxiety. It allows people to focus on those things at the end of their life which we would all want to focus on – our own thoughts, our own families, our own farewells, the existential questions, without being in a panic about what is going to happen at the end.
Ken Webb: I get that. Personally, I would like to have that option in my drawer. I might not ever use it but it would be comforting to me personally.
Andrew Denton: Philip Redelman’s understanding of how the laws work overseas was even more revealing.
Philip Redelman: But overseas, right, once – I don't know how they do it, I haven't looked at the fine details or anything like that – but if you’re a palliative care doctor and you worked in a hospital and I said to them, “Here is the bit of paper that says it’s OK, the legal document,” like that, then the nurses would say that's fine. If you wrote it, they would give it.
Andrew Denton: No. No, that's not how it works.
Philip Redelman: They wouldn't…
Andrew Denton: No, no. First of all, the nurses can't do it. It takes two doctors to sign off on it...
Philip Redelman: Yeah, alright.
Andrew Denton: And it happens over a period of time. It is not like a two-week thing, and usually what they find with this is they spend a lot of time with that patient counselling them, and one of those doctors is almost always their family doctor so they already know them. So it is never quick, it is never easy, and it is never done easily.
Philip Redelman: OK, fair enough. Well what about the person with some dementia – they are not mad, and the family say, “Look, I think this is a good idea,” and things like that. “Look, Mum, things are tough at home”. How does that happen over there? What protection do they have there?
Andrew Denton: They have to be able to competently request it and the doctor – and more than one doctor, and in the case of psychiatric in Belgium it is three doctors have to sign off – they have to agree that this person is competent, this is a competent and rational decision. So it is not an advanced directive that they read five years later and just knock them out.
Philip Redelman: Fair enough. I mean you just need such guidelines.
Andrew Denton: And they have spent years, the medical profession, working out these guidelines. And yes, there are people who have strong moral objections who will not participate, and that is as it should and will always be, but it doesn't mean the system isn't very carefully thought through, and there are a lot of safeguards.
Philip Redelman: Maybe it is working, but in all fairness, I haven't studied this recently or anything like that. That's really the situation.
Andrew Denton: The reason I raise it is because it was doctors in the Netherlands that designed the system there, it was palliative care doctors in Belgium that did it, it was doctors in Oregon who took a neutral position – so didn't oppose it but made that law possible. So it feels to me that doctors such as yourselves, who don't ever need to agree with it, nonetheless, is it not your duty to perhaps pay closer attention to what the arguments are so that you can say in the end, “Look I take a moral stand and I don't agree with it, but I realise that these slippery slope arguments are not necessarily true, that it is possible to create a system which is policed”?
Philip Redelman: I guess that's right, at the end of the day, but when it comes to looking, well, I will look a bit harder, but at the moment it is not high on my agenda of topics.
Andrew Denton: The men and women who work in palliative care are asked to provide services that are so much more than purely medical. That’s because dying is more than a medical experience. It’s spiritual. Existential. And – ultimately – deeply personal.
Two things struck me about the doctors and nurses I spoke to at Sacred Heart – one, their deep commitment, and compassion towards their patients, and two, the universal acknowledgement of how hard they found it when a patient was beyond their help.
It seemed to me that if they understood better how their counterparts overseas had embraced a way to assist those unfortunate few to die, they would not be so resistant to the thought of doing the same here – or at least allowing others to.
But the deeper I dug, the more I found that this resistance was not only implacable, but its implications for some patients deeply troubling.
Next episode, join me as I talk with the director of Sacred Heart, Professor Richard Chye, and ask: Whose life is it anyway?
Ken Webb: Personally, I would like to have that option in my drawer. I I might not ever use it but it would be comforting to me personally.
Andrew Denton: Well I have decided after being here just for a week that I want to be hit by a comet while having sex.
Ken Webb: [Laughing] Yep, we'll arrange that for you.
Episode 11 – Whose life is it anyway?
[PRAYER BELL CHIMES]
[Ethereal female voice]: There is no death. There is only me, me, me who’s dying.
Richard Chye: I’m not going to say I'm going to control everybody's physical pain – no, I'm not going to be able to do that, because there will always be some patients who will have pain that is not controlled. And I accept that, but I also make sure that I tell patients, “This is the best I have done, this is as much as I can minimise your patient's pain, but I am going to help you live with that pain”.
Andrew Denton: Professor Richard Chye is the director of the Sacred Heart Palliative Care unit at St Vincent’s hospital in Sydney. He’s invited me to spend a week with his team to see what they do and, also, to discuss the subject of assisted dying.
Two things have been obvious while I’ve been here: the compassion and care from the staff, as they help people to die in, often very complex circumstances. And just as apparent: a deep resistance to the thought of assisted dying. Exactly how deep, I didn’t realise until I sat down to speak with Richard.
Andrew Denton: Richard Chye is a gifted physician and teacher. He is also a hugely influential figure in palliative care in Australia. Apart from being a member of various state and national committees he’s a board member of Palliative Care Australia, the peak national organisation.
So what does the expression “death with dignity” mean to him?
Richard Chye: Death with dignity means that patients have died comfortably, from a physical and existential point of view, that they are not thrashing around as they die, that love is still expressed by all between patient and family, and that patients are able to slip away in their sleep when it is time and therefore it is not for me to say when that is because it is the patient and his or her maker that decides when that will happen.
Andrew Denton: What symptoms are most difficult for you to control?
Richard Chye: The most difficult symptom is existential
Andrew Denton: That's interesting. What is that? How do you define it?
Richard Chye: It’s distress, a patient's distress about their condition, their illness, what it is doing to them. That I think is the most difficult symptom to try and get over. Because it is not a physical symptom like pain or nausea, vomiting; it is an acceptance, it is a mental anguish.
Andrew Denton: And that is entirely understandable distress.
Richard Chye: Yes. And therefore what I try to do is to try and say to these patients, “These are the medications that we can use to help your pain, to prevent nausea, and these are the people who can help you to the bathroom and make sure that things are still very dignified for you and that we are here to help you understand what the illness is doing for you”.
Andrew Denton: Palliative Care Australia acknowledges that even with optimal care not all pain and suffering can be relieved. What are the kind of cases where you see a situation like that?
Richard Chye: I think there will always be patients who will have very difficult pain, Thankfully, they're actually very unusual, very rare, very commonly we’ll need to resort to more than medication, so you may actually have to do a nerve block, we may have to do an epidural into the spinal cord to numb everything. So very, very few patients die in physical pain, and I think that is important to know.
Andrew Denton: Of course all pain is mental. Whether it’s physical or existential it is your brain that processes it. And, if it’s your pain, then the question you are most likely asking yourself is: “can it be stopped?” According to Richard Chye, not always...
Richard Chye: I’m not going to say I'm going to control everybody's physical pain – no, I'm not going to be able to do that, because there will always be some patients who will have pain that is not controlled. And I accept that, but I also make sure that I tell patients, “This is the best I have done, this is as much as I can minimise your patient's pain, but I am going to help you live with that pain”.
Andrew Denton: Although palliative care is a place for the dying, Richard’s focus is very much on how people can get the most out of the end of their life. That means walking a delicate line between doing everything to make the patient comfortable, but not prolonging their life unnecessarily. It is the credo of palliative care: “We will neither hasten nor prolong death”. I ask Richard what this means in practice.
Richard Chye: In terms of prolonging death, it is to make sure that we give the right treatment to the right patient at the right time, I think that if the chance of surviving the disease is very poor, then giving treatment to prolong that by a couple of weeks is prolonging death.
Andrew Denton: So what is the difference between not prolonging death but not hastening it?
Richard Chye: Not prolonging death is allowing the disease to develop naturally, with a view of not prolonging suffering, with a view that patients are comfortable for the time that they have left … and yes, I recognise it is not an easy thing to differentiate to say why is it different from hastening somebody's death by giving them an injection, a lethal injection. And I think that's not an easy concept. But then again, it is normal to have those feelings as well, it is normal for me to say, “I wish I could give you something that will kill you earlier so that you don't have to go through that suffering”. That is a normal emotion to have. And again, I think if you don't have this emotion, then I think I will be worried about myself and how I look after my patients.
Andrew Denton: Have you been involved in cases where you have unintentionally hastened a patient's death?
Richard Chye: I don't think so. I can't think of any instance where I have, when you say, unintentionally hastened a patient's death.
Pain medication is given every four hours, so there will be a small percentage who will die at the end of a needle, and people will say, oh, the morphine has caused it, when in fact there was always going to be a chance that some patients will die at the end of a needle. And some people then foresee, “Oh well you have given a needle, it has caused the death; you have euthanased them”, when in fact they were going to die anyway.
Andrew Denton: And as you say, your primary intent is to manage pain. If, however, the medication isn't capable of managing the pain, is there a limit to the amount of medication you will give?
Richard Chye: Yes. More doesn't mean better – only in the Chinese culture it is. [Laughing] But more opioids, just increasing the dose, doesn't mean the pain will get better. I have to actually think of other ways of controlling pain, like other nerve medications, neuropathic agents – methadone, for example. I have to think about whether a nerve block or an epidural, that we talked about, has a role, because more of the same I think is not likely to work.
Andrew Denton: And if that combination of things doesn't work – I know we are talking about a small percentage but that percentage exists – what then?
Richard Chye: I walk with the patient. I say to them, “Yes, we have done our best to control your pain, yes, the pain is still there, but I will help you live with that pain”. The patients who have committed suicide on my watch were not in pain, not in physical pain. The patients who committed suicide on my watch feared that they will have pain.
Andrew Denton: That is a jolting thought – that some people are so frightened by the prospect of dying they would rather kill themselves. All the more disturbing in a place where they know they have come to die. And what of those who actually ask for help as they near the end?
Andrew Denton: Palliative Care Australia acknowledges that there are patients who make rational and persistent requests for a hastened death. In what situations would that occur?
Richard Chye: I think in patients who don't want to live the way they are, who have not accepted that their lives have changed.
Andrew Denton: And when a competent adult makes a rational and persistent and sincere request for a hastened death, how do you respond?
Richard Chye: I would say to them that from my own morals I would help them with their symptoms and their fears, to the best of my ability, but I would not see it as, my moral role and my ethical role, to end that patient’s life; because I don't believe in that. Law doesn't guide me. It is my ethics and my morals that guides me more.
Andrew Denton: Bang. So there it is. Clear and unblinking. No matter the authenticity or desperation of a dying patient’s request, Richard’s medical response will ultimately be decided according to his morals. And this is not just anybody. This is the man in charge of palliative care.
It makes me wonder. Whose life is it anyway?
Andrew Denton: Richard Chye is a powerful voice in the Australian palliative care community. But he is not the only one.
Ian Maddocks: I'm Ian Maddocks and I'm retired. I was a palliative care physician for the last 28 years and I'm now losing sight and hearing and unable to be useful to people. So here I am.
Andrew Denton: Professor Ian Maddocks is known as the father of palliative care in Australia. He was first Chair of Palliative Care at Flinders University, first President of the Australian Association for Hospice and Palliative Care and first President of the Australian and New Zealand Society for Palliative Medicine. Now retired, he sees the question of assisted dying from a very different perspective to Richard.
Ian Maddocks: I think that you try to do the loving thing in whatever situation you land, and while the Catholic debate will talk about love as being the most important and God’s love can keep you, love has got many ways of operating I think and I believe that assisting someone to die can be a loving act.
Andrew Denton: Can you explain to me in practice what the central tenet of neither hastening nor prolonging death means?
Ian Maddocks: So what does it mean to those people who practice palliative care? It’s a defence against any accusation that they are using drugs that will shorten life. It’s a defence also against thinking that they’ve got too strong an emphasis on continuing life, because they don’t want to have that either. On either count I think it’s a bit of a defensive sort of stance.
Andrew Denton: Is there some suffering that can, in truth, only be relieved by death?
IM: It’s tricky but usually you can do something for physical suffering. It’s the social suffering of the family and the patient together, the grief – these are the things that are telling and...
Andrew Denton: Is this what’s referred to as existential pain?
Ian Maddocks: I suppose so. I don’t use that term much myself. It’s personal discomfort that you really have to try and tune in to and understand, and again, it’s why you need to walk beside people and you need to walk with the family as well. Because then you get a better picture I think of the whole thing that we’re facing, and the strategies that you try to design need to take into account all those sorts of things.
Andrew Denton: From the patient's point of view though there might not always be something you can do. It may be to a point where they don't want something done.
Ian Maddocks: Well they don't want to, that's right, and they quite rightly, and you've got to respect that. “Look, I can do this and I can do that”. “Oh stuff that, why don't you just finish this?” And that’s where the drugs sometimes do too much and they make people too asleep. They’re too comfortable in a sense. And some people will tell you, “Look, I don’t mind a bit of pain but let me just be awake”.
Andrew Denton: Have there been any occasions where being entirely honest with yourself you know that your actions helped hasten somebody's death?
Ian Maddocks: Yes, yes, yes, and very rarely. They've usually been situations when I said if you take this and this and this, or I've given an extra dose of medication because the whole thing was hopeless and the family are saying, “Can’t you do something?” But it's very uncommon in my experience.
Andrew Denton: And the fact it's uncommon reflect absolutely what happens overseas where these things are legal. It's a very small number of people.
Ian Maddocks: It’s not going to be huge flood of people requesting and wanting, I think. People want to live, on the whole, and sometimes they want to live when you say, “For God’s sake, why do you want to live?” But they do.
Andrew Denton: Is this something that you also know of your colleagues, that they have been in similar situations?
Ian Maddocks: It happens. It must be happening because if you’re doing sensible things for particular situations, there will occasionally rarely be things where you feel that this is the right thing to do, I think, and unless you’ve got an absolutist point of view, which some people have, then you will probably try to do something sensible.
Andrew Denton: Ian is right. Even without a law, doctors in Australia have been assisting people to die for years. Not only did I get this anecdotally from many doctors I spoke to, surveys confirm it.
In 1997, national research into the decisions doctors make while caring for dying patients found that euthanasia, including physician-assisted death, accounted for nearly 2% of all Australian deaths.
In 2001 a national survey of general surgeons revealed that more than 20% had hastened death by giving more medication than was necessary – without the consent of the patient.
And, in 2007, a survey of Victorian doctors showed that, of those who had experienced requests from patients to hasten death, 35% had administered drugs with the intention of doing so.
So Ian Maddocks is just one of, perhaps, thousands, of doctors in Australia who have practiced assisted dying. Only we don’t really know how many. Or whether they’re doing it well, or for the right reasons, or with the consent of patients – as they do overseas – because the absence of a law here means we have no guidelines, no reporting mechanisms, and no system of review. Everything has to stay in the dark.
All we have is doctors doing what they believe is best, depending on their moral view of the universe. Which brings us back to Richard Chye. Even if his morals allowed, Richard doesn’t believe a safe law for assisted dying can ever be created.
Richard Chye: What I fear most is whilst legislation safeguards whatever is put in place to help an individual right to be assisted to die, what my fear is that it will lead to – because of bad apples – to people who are put to death or assisted to die without their consent for somebody else's gain. And I think that whatever safeguards that you have in place, or that the government has in place, is going to not prevent those things from happening. I see that commonly, that it can be misused for personal gain or somebody else's gain.
Andrew Denton: When you say you see it commonly, what do you mean – here?
Richard Chye : In Australia. Yes.
Andrew Denton: Can you give an example?
Richard Chye: I remember a case where it actually went to court, about someone in the northern beaches who – I think that two ladies – and I can't remember them – admitted that they actually "euthanased", in inverted commas, their loved one for personal gain.
Andrew Denton: And I'm sure the law dealt with them.
Richard Chye: The law dealt with them, but unfortunately that patient died.
Andrew Denton: Absolutely. But you see that is happening without any scrutiny.
Richard Chye: What I fear, however, is its implications.
Andrew Denton: Meaning?
Richard Chye: Meaning if I do give something, a lethal injection, to end somebody else’s life, what are the implications for the next patient? How am I going to look after the next patient, who doesn't deserve, doesn't want it?
Andrew Denton: That would be a fair question, but under a law, it would be very, very clear, because only the patient could request it.
Richard Chye: Yes and no.
Andrew Denton: Well, yes – that's how it works.
Richard Chye: Patients can request it, yes. I think the difficulty is what do we accept as a patient want?
Richard Chye: One in 20, 5% of my patients, will express to me that they have had enough, that they wish they died, had a good innings, don't want to live longer than they should, but does that mean they all want to die there and then? And I think that is a thing that can be misconstrued very, very quickly.
Andrew Denton: Ian Maddocks sees a law as, not only desirable, but clearly workable.
Ian Maddocks: I have said on a number of occasions that I would like to have an assurance that if I did something sensible with loving care and without haste and transparently, that I would not be guilty of a criminal offence. But I think it would be possible to write not a law that tries to define the circumstances in which you may kill somebody but says that if doctors have done it without haste and for clearly reported and explained suffering, then the doctor is also given the excuse, but he has to report it, he has to have perhaps some oversight.
You’ve got to be transparent about it, you’ve got to write it all down, you’ve got to have – after you’ve done it, you should report it to the coroner and say, “This is what I’ve done and here are my records to go through”.
Andrew Denton: The business of dying is as complex and individual as the people who come to palliative care. No-one knows this better than Richard Chye, who, despite his opposition to assisted dying, is nonetheless a believer in patient autonomy.
Richard Chye: We doctors don't give control to our patients, because we want to treat, and I think that is something that we haven't yet taught our doctors yet – you have to listen to your patients, you have to ask your patients what they want and what they don't want, especially the parts about what they don't want.
Andrew Denton: In the name of autonomy, Richard confirms that there is one way – in fact it is Palliative Care Australia policy – where it is OK to assist a patient should they wish to bring an end to their life more quickly.
Richard Chye: It is part of the principle of autonomy that patients have the right to refuse treatment even though that treatment may prolong their life.
Andrew Denton: I see. Are there people who refuse treatment, all treatment, including food and water, because they wish to die?
Richard Chye: Yes they do.
Andrew Denton: How long does that take? If you have gone off food and water, how long does it take a human body to shut itself down?
Richard Chye: That's a very good question, and I have seen patients go in two or three days and I had a patient who went after three weeks, so it varies, and it is according to how much – what I would call, in inverted commas, “reserve”, how much reserve they actually have left in the body that can keep them going, so how much food have they consumed or were given just prior to stopping.
Andrew Denton: My sense is that to refuse food and water is a painful way to go.
Richard Chye: I think not physically but psychologically I think it is a very painful way to go, and I remember a patient who committed suicide who decided to stop eating and drinking and then because she was told, “If you do that, you will be dead in two or three days”. She committed suicide because it hadn't happened after two weeks.
Andrew Denton: Wow, that is a terrible thought! So Palliative Care Australia will accept patient autonomy when it comes to refusing food and water...
Richard Chye: Yes.
Andrew Denton: but they won't accept patient autonomy when it comes to requesting a faster and more merciful death. Why is that?
Richard Chye: I think Palliative Care Australia, and I guess also from my point of view, we are very keen to understand what patients want. So if a patient wants to stop treatment and die as a result of their illness, then that is something we would be very happy to accept, especially when the treatment, was likely to cause more burden than benefit, then yes, by providing good palliative care, by providing good psychosocial and symptom management, then that is the right thing to do for that patient. I think for a patient to actively say, “Put me to death, kill me now!” I think that is a fundamentally different thing, because whilst my intent in palliative care is to keep patients comfortable as they die, my intent is not, definitely not, to kill patients.
Andrew Denton: Yeah, no, I certainly understand that. From the patient's point of view, though, I would imagine there is zero difference – you know, “I want to die, I don't have the option of dying quickly because it is not available here, so I will die as quickly as I can” –which unfortunately might be two or three weeks.
Richard Chye: Thankfully that is very rare, that two or three weeks, but yes, I think it is uncomfortable for these patients to think that they are taking longer to die, and it is also uncomfortable for families to say they are taking too long to die.
Those patients who are waiting a long time to die, those families who are waiting for their loved one to die who are taking a longer time, what it means for us is, “Yes, I acknowledge, we acknowledge that it is taking longer, but we are still going to provide you with the best care that we can”.
Andrew Denton: And I don't doubt that, but to me it still sounds very tough. That patient who is beyond any medical help, who has determined that they wish to die but whose only choice is to have a longer, slower dying – two, three days – two, three weeks – to whose benefit are they being kept alive?
Richard Chye: I think that patients who live do provide some benefit for the rest of the family and for themselves.
Of all the things that I learnt during the making of this podcast, I found this to be the most shocking: That it is ethically – officially – acceptable in Australia for a patient to choose to die slowly and painfully by means of dehydration and starvation. But it is ethically unacceptable for that same patient to choose a death that is painless and quick.
Since that conversation I received a letter, unprompted, from Jason in Queensland. He wrote of his dying wife, Melanie:
“At the moment, she’s lying next to me in her hospital bed slowly dying from pancreatic cancer. It has been 10 days without any food or drink and she has now deteriorated to just a shell of the woman she used to be. She’s not in pain … but it’s hardly dignified – she would not have wanted to go out like this.”
Jason wrote to me again a week later. He wanted to emphasise the heroic work of the palliative care team in caring for his wife. But he added this:
“The last five days or so were particularly bad. There were very few signs that Melanie was conscious at all, and letting her lie there gasping for air just seemed cruel.”
Melanie was just 38.
Andrew Denton: I was talking with Dr Redelman about this the other day, and he referred to euthanasia or assisted dying as murder. Is that how you see it?
Richard Chye: If there’s the intent of actually killing a patient, then yes, it is murder, because murder is the intention to kill.
Andrew Denton: See, this is where I am really interested, because you and he are both really intelligent, compassionate men. Do you not see a distinction between an unrequested act of violent aggression and a sincerely requested act of medical compassion?
Richard Chye: But the intention is still there. The intention doesn't change.
Andrew Denton: No, the intention is the patient's intention. It is not an intention from someone else to murder someone; it is a request for help from a patient to help me die. Do you not see a significant difference there?
Richard Chye: No, I think there is a difference, because it is what I do to hasten a patient's death. It is my intention. It is not a patient's intention I am talking about.
Andrew Denton: OK, that is kind of at the heart of it, because you were saying before doctors need to be better at listening to their patients, so isn't this about the patient's intention?
Richard Chye: It is the patient's intention to want to die, yes. But for me to assist in that is also my intention, my personal intention as a doctor, to actually enact that.
Andrew Denton: On one level, I have no argument with Richard. His morality is his and he is entitled to hold to it. But should his be the only view allowed? Death is much more than a medical experience. As one poet described it “Death is the last intimate thing we do”. Shouldn’t the patient’s wishes about this deeply personal act also be considered?
In Oregon, the Netherlands and Belgium the law allows doctors and nurses with moral objections to assisted dying to refuse to participate. There is no need to explain. No question or censure. They simply opt out.
Those who see assisted dying as consistent with their medical duties act, also, according to their conscience.
In Belgium, I met a Jesuit priest who was also a palliative care doctor. He had ethical objections to assisted dying and so he would not perform it. But, if a patient of his chose the option within palliative care, then he would do everything to prepare them, physically and spiritually, up until their final moments before putting them into the care of another doctor who would legally help them to die.
Everybody’s conscience remained clear. But it was the patient’s wishes that were considered to be the most important thing.
Every year Wollongong University’s Health Services Unit collects data from the 106 Palliative Care units across Australia. The most recent showed that one fifth of patients in the last 24 hours of life endured moderate to severe pain despite the best efforts of palliative care;
30% of families watching their loved ones die also experienced moderate to severe pain.
Shayne Higson knows this pain all too well. Her mother, Jan, contracted an aggressive form of brain cancer. At first she was nursed at home by the family, with help from palliative care teams.
Shayne Higson: Well Mum ended up – her quality of life had deteriorated to a point where she couldn't read, she couldn't write, she could hardly speak, she was bedridden, she'd lost all feeling down one side and she would try to describe what it felt like. She felt that her body was already half dead.
Andrew Denton: In her last months Jan began to suffer terrible seizures.
Shayne Higson: And she was seizuring for – I don't know how long – well over an hour, maybe couple of hours. She said it was like a giant thrashing around in her body. The brain, as you know, it creates all sensations so things were happening in her.
She kept shaking, and of course in the back of my mind was that was what she feared the most – was having another seizure. She said “Whatever you do, do not let me have another seizure”. And so I knew that through the whole six months that was what she feared the most, because of how dreadful it felt to her. And she kept shaking. When she didn't stop shaking, we said, “Can you give her more? It's not working”. He said, “I can only give her this amount and every 15 minutes. I'm not authorised to give her any more. If I give her more, it might end it”.
Andrew Denton: Like many people, Jan had always believed that when the time came and the pain of her cancer became too much, doctors would “do something” to prevent her suffering.
Shayne Higson: She was very clear what she wanted and she'd said it right at the beginning as well. But they're not allowed to. That's the thing. once she went into hospital, that's when I really realised that it's just not allowed. It's not allowed. The terminal sedation which is the best option that we have now, does not guarantee a peaceful end.
Andrew Denton: When you spoke to the medical staff –when you spoke to them, you said to them clearly, “My mum wants to be knocked out”. Do you recall clearly what they said to you in response or was it a vague sort of obfuscation?
Shayne Higson: No they actually said, “I think your Mum might have depression”.
Andrew Denton: So I've got this picture clear. She was in a couple of weeks of death at this point.
Shayne Higson: Yes.
Andrew Denton: She had a major brain tumour.
Shayne Higson: Multiple.
Andrew Denton: Multiple tumours, was clearly in pain and her body was shutting down all over the place, and they said she may have depression.
Shayne Higson: Yes. Mum didn't really like when the palliative care doctor came because – I don't know – Mum wasn't religious, and just the manner, the sort of questions that were being asked, and I know that he meant well, but coming in and saying, “Well, Jan, how are you feeling?”, and she'd say how she was feeling. This was early on when she could talk. And when she started asking and saying, “I just want to be knocked out,” and he said, “Why?” she said, “Because I want to stop thinking. I want to stop – shut down what I'm thinking”. And he said, “Well, what are you thinking about?” I mean she just sort of looked, you know. If she was the sort of person that would swear, I think she would have sworn at him, because like what do you think she was thinking! I think that's what she said – “What do you think I'm thinking about?”
Andrew Denton: With days to live, Jan was moved into the palliative care unit at a private hospital. She was in such pain that her family begged she be given something to knock her out.
Can you tell me about Jan's last days because there was still a lot of pain ahead, wasn't there?
Shayne Higson: Yes, it was sort of a bit of a really difficult time because she was having trouble swallowing and all her medication was in tablet form, and it was such a battle. She stopped eating.
Andrew Denton: As the end approached Jan spiralled into greater pain.
Shayne Higson: They did say that at the end if they go off the medication it ends it quicker but it's not pleasant. Just seeing Mum so – the one side of her that that was okay, on the second night she was thrashing her head from side to side, and the leg was going up and down, up and down, up and down.
So it's like seeing someone thrashing around but only with half their body. And again you know we called in the staff and tried to get medication that would ease that suffering and the distress and agitation. And it took, again, ages before they were able, because they're not allowed to give – they're so frightened of giving doses that may end it.
Andrew Denton: So the best that they were prepared to throw at it clearly offered no genuine relief?
Shayne Higson: No, no. I thought that terminal sedation – not that I knew that that's what it was called, but the way that the GP had described it – and I've heard it described now – where they put you into a sort of an induced coma, I was picturing, where there would be no suffering, but that's not right.
Andrew Denton: So how many nights did this go on altogether?
Shayne Higson: Five. Five days. She went in on Thursday and she died on Tuesday morning.
Andrew Denton: So five days of largely unrelieved pain and distress for her of course – also for you – and at no point was anyone prepared to go, “We can do more”.
Shayne Higson: No. No, not a nurse or doctor anything.
Andrew Denton: The strong sense I get as I'm listening to you is that you must have all felt –and above all your mum – completely powerless and helpless in this situation.
Shayne Higson: Yes, completely powerless and angry, really, really upset that at such a terrible time that you are sort of battling this. It just shouldn't have to be like that. At one point my older sister, she said to the GP, “What are we meant to do? Go down to Kings Cross on the street and try and score heroin or something? What choice – what are you saying? What choice do we have?” We just couldn't believe what was happening at that end stage.
Andrew Denton: Did your mum get any peace before she died?
Shayne Higson: I wouldn't say so. It wasn't peaceful and the look on her face at the end, yeah, showed it was not a peaceful end. And if that's the best that they can offer sort of thing, it’s not – we can do better than that.
Andrew Denton: What happened to her mother spurred Shayne to stand for the Senate as a candidate for the Voluntary Euthanasia Party.
Shayne Higson: I'm happy to speak to any of the opponents and say, “Tell me what happened to my mum is right, is humane, is compassionate – because it wasn't, and they can't deny what happened to Mum. I mean I've recorded it and it happened. The doctors can't deny what happened.
They can't really say that it wasn't good palliative care because actually Mum had the best palliative care.
Andrew Denton: What Shayne’s mum went through was far removed from anyone’s description of death with dignity. The scars it left behind, for Shayne, may never heal.
Shayne Higson: That last few weeks, I felt like I let her down and I didn't get the love and the goodbye that I would have liked, that I think everybody deserves when you love someone like a parent and you've taken care of them. But she would have felt let down. She sort of said things like, “Why are they torturing me? Why are they so – meaning the doctors – why are they so cruel? This is torture,” and it was. It was torture to force her to endure that end.
Andrew Denton: Shayne’s story, and others I had heard like it, were very much in my head when I sat down for my last conversation with Richard Chye.
Andrew Denton: I have spoken with people who are still alive who have been through palliative care in Australia, for whom the pain relief hasn't really touched the sides. I have spoken with families who have seen their family members die in palliative care units in Australia begging for more medication and being told that there wasn’t more or there wasn't more scheduled right now. Who could be more vulnerable than these people and why shouldn't they be protected?
Richard Chye: They are vulnerable patients, they are vulnerable people, and yes, if they are not getting the adequate symptom management, then it is a health system issue that we need to try and solve. So if someone’s...
Andrew Denton: But you know why it is happening – we have discussed it – because there is a limit to how much in some cases pain relief you will give. You said so yourself the other day. And that limit effectively is: “I want to die, I need to die; I can't stand this anymore”.
Richard Chye: Part of the provision of palliative care is understanding, yes, the reasons for wanting to die. If pain is a very difficult symptom and it has led to a patient saying “I want to die,” then it invokes in me the need to do better, to try and improve that pain, and if I cannot improve that pain, then I try and help that patient live with that pain.
Andrew Denton: That’s very tough if you are that patient, Richard!
Richard Chye: It is very tough, but I am not going to leave that patient. I am not going to leave the patient in pain...
Andrew Denton: But effectively you are. I am not saying you personally but effectively that is what you are doing. For those patients that can't be helped, that is effectively what you are doing.
Richard Chye: No, I don't agree with that. I think that I am not leaving that patient in pain. I...
Andrew Denton: Who are these people screaming for help that I have spoken to?
Richard Chye: That is a systems issue that I think we need to examine why patients are, as you said, asking for pain relief and being told it is not due yet.
Andrew Denton: It is your system though, Richard. And again, I am not saying you,
Richard Chye: I am saying it is palliative care, it is end of life care; it is your system.
We are not perfect.
Andrew Denton: Of course not.
Richard Chye: We are not perfect in the palliative care system.
Andrew Denton: And you can't be. And no-one suggests that you can or should be because there are some things which can't be managed, which are beyond all your efforts and skills.
Richard Chye: But I think we need to look at – I think if someone is saying that I am in pain, we need to be able to look not only at the treatment but look at the system as well. Why is that patient not able to get pain relief? Is it because we have staff, not only in the palliative care arena but also in the hospital, arena, in terms of are they adequately trained? Do they have the resources to manage them? And I am saying at the moment no, I don't think we have all the resources that palliative care in Australia requires to be able to provide the best care that we can at this point in time, and that includes educating the rest of the non-palliative care health system about how to look after our dying.
Andrew Denton: And they are all good questions, and they should be asked and asked consistently; however, Palliative Care Australia says that even with optimal care not all pain and suffering can be relieved, and so for those few people, that small number of people that you can't help, you offer nothing. It is not a systemic failure; it is a deliberate decision. Let me ask you this – is it true that there is some suffering that can only be relieved by death?
Richard Chye: In medicine we never say never.
Andrew Denton: But in reality?
Richard Chye: I don't know.
Andrew Denton: Richard – this is the only time where I thought you were being disingenuous. I think you do know.
Richard Chye: I would feel that there will be times, and I think it is normal me to feel if I haven't controlled your pain or I haven't controlled your depression or your mood, yes, you are probably better off dying earlier than now. But that is not going to stop me from trying. It means that I acknowledge that the problem is difficult. It means I acknowledge to myself, to my team, to my patient that it is difficult, acknowledge that it is not easy to look after a particular symptom, acknowledge that I am going to be trying my best to help that patient, acknowledge that I am going to be with my patient to try look after that patient and try to minimise that suffering as much as I can.
Yes, in my heart I would think that this patient may be better off dying earlier, but that is a normal reaction, normal emotion for me to have, and I think that if I didn't have that emotion, I have to worry about myself, but it doesn't absolve me from abandoning my patient and trying.
Andrew Denton: Which is admirable, but with respect, what I hear there is about you but not about the patient.
Richard Chye: No, I also acknowledge with the patient that it is hard, acknowledge that the patient is going through a very difficult period, going through a lot of suffering, yes, acknowledge that. And that is part of that acknowledgement with the patient who understands that they are suffering. Yes, they will say this suffering is very hard for them and they would prefer to die, and I would say to them, “Yes, I acknowledge that you are feeling that way but I will continue to try and make you feel better so you don't have to feel that way”. So I don't see – it is not for me to say or not my practice or not my ethics or not my morals to say, “Because I can't look after you, you are better off dead, and I will pursue that end”. No, that is not me, and that is not palliative care.
Andrew Denton: And nor should it be. And as you know, under these proposed laws, it would never be you saying that; it would be the patient requesting it. I’ll finish with Palliative Care Australia's statement that it accepts quality care at the end of life as a basic human right. Does that human right stop with somebody requesting to end their life by their own timing?
Richard Chye: I think quality care is providing the best care that we can, so that the patient is provided with good end of life care. I don't see providing euthanasia as part of the quality care, and I don't think Palliative Care Australia sees euthanasia as quality care.
Andrew Denton: There are others, perhaps many, working in palliative care in Australia, who share Ian Maddocks’ view that...
Ian Maddocks : Euthanasia should be done the way we do palliative care and palliative care physicians should be ready to be part of it if they are allowed to and they feel able to. They should do it with love.
Andrew Denton: Make no mistake. To assist someone to die who is otherwise beyond medical help and who asks for that assistance is not an act of murder. They are already dying. What they seek is a compassionate choice about how it happens. Far from murder, it is an act of love.
Palliative Care Australia’s official line, whenever the subject of assisted dying comes up, is to deflect it by arguing that the way to provide better care for their patients is through giving palliative care greater funding and more resources.
While no-one would argue that this is a bad idea – palliative care provides an important and admirable service – it deliberately skips over those patients who they cannot help, either by law, by the limits of medicine, or by the boundaries of their own morality.
It makes invisible Spencer Ratcliffe’s partner, Deb, clawing the walls in pain and being told she has to wait for her next medication. It makes invisible Shayne Higson’s mum Jan, thrashing in agony for 5 nights with a brain tumour because she was told “We can do no more”. It makes invisible 38-year-old Melanie who took 15 days without food and water to die, the last 5 of which her husband Jason described as “cruel”. It makes invisible those patients who have committed lonely suicide within palliative care rather than endure the slow grind of death. It makes invisible those 20% of their patients who – according to their own statistics – endured moderate to severe pain in the last 24 hours of their life despite the best efforts of palliative care. And it makes invisible those families who’ve had to stand by, helplessly, and watch as their loved ones die slowly and in pain.
My question is: “Why?”
Everyone I spoke to in palliative care acknowledges they exist – the “bad deaths” who they “wish they could have done more” for. Why aren’t these patients the ones Palliative Care Australia are doing everything to help?
Why do they continue to reject any thought of assisted dying even though they must know that it would provide the relief they can’t?
How can they already accept, in principle, that a dying patient has a right to hasten their own death, but reject that they have a right to choose how?
How can they claim to support patient autonomy yet, at the same time, allow the personal morality of their doctors to determine the choices of their patients?
And why do they continue to push the line that legalised assisted dying would detract from palliative care when overseas experience has shown that, in those countries where such laws exist, palliative care services have improved as a direct result?
If palliative care is truly – as Palliative Care Australia claims – about quality care at the end of life, then as long as patients are dying like Deb and Jan and Melanie, it is fair to question that claim.
In the 1980s, the nuns of Sacred Heart set aside their morality and threw open their doors to Sydney’s HIV-ravaged gay community. It was a powerful demonstration of the love and compassion that lies at the heart of palliative care.
Assisted dying is love and compassion extended to those who are most desperately in need.
I hope that, on this, Palliative Care Australia will look again, with clear eyes and honest hearts.
[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.
In our next episode we travel on the long journey with Ray Godbold, a palliative care nurse who is dying of cancer – but who doesn’t want to die in palliative care.
That’s because Ray knows what some doctors prefer not to admit: That, even in palliative care, not everything can be taken care of, that a patient’s choices about how they die are very limited, and that, sometimes, their dying involves a wildness no-one can predict.
What Ray can’t know is that his own death will turn out to be everything he was hoping that he and his family would be spared.
Episode 12 – Velvet Ray
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is dying.
Ray Godbold: I've decided that with the experience I've had in my life that the only way that I can manage my own death is to become quite active and take things into my own hands and not have a stranger come into my life in the last 24 to 48 hours dictating what I should and shouldn’t be doing as far as my own death is concerned.
Andrew Denton: Ray Godbold is a palliative care nurse faced with terminal cancer. But he doesn’t want to die in palliative care.
Ray knows what some doctors prefer not to admit: that, even in palliative care, not everything can be taken care of, that a patient's choices about how they die are very limited, and that, sometimes, their dying involves a wildness no-one can predict.
What Ray doesn’t know is that his own death will turn out to be everything he was hoping that he and his family would be spared.
Andrew Denton: My name’s Andrew Denton. You’re listening to Better Off Dead. And this is the story of Velvet Ray.
Ray Godbold: My name's Ray Godbold. I only get called Raymond when I'm in trouble. I’m 59 years of age, turn 60 next January. I've been a registered nurse for 34 years, and gradually at the end of my career I graduated towards cancer care and the palliative care field.
Andrew Denton: Ray earned the nickname “Velvet” from a patient grateful for his gentle way with the dying. Now Ray is dying too.
Ray Godbold: I was working as the clinical nurse consultant for Darwin city in May 2012 when I was diagnosed with stage 4 cancers.
Andrew Denton: There had been no symptoms. Just a bad bout of indigestion. But there it was – an 8 cm tumour that started in Ray’s stomach, moved to his oesophagus, and was still on the move.
Ray: He pulled the scan up and he said, “There it is. It's in your liver already”. So once it's spread, you're not an option for surgery, which is the only curative measure you have.
Andrew Denton: It’s March 31, 2015 and I’m sitting in Ray’s backyard in the Victorian seaside town of Inverloch. There’s a lovingly-tended vegetable garden that backs on to the bush. Birds are everywhere. Ray, a tall man with a dry sense of humour, tells me about how he first met his wife, Robyn.
Ray: It was a very hot day and at the end of it there was a dam there and we all went skinny-dipping, and I must say she caught my eye then.
Andrew Denton: Was that a similar moment for you Robyn?
Robyn Godbold: Probably. I can't remember – I don't...
Andrew Denton: I think you're obligated to say yes.
Robyn: Not as vivid as Ray's memory, but yes, definitely.
Andrew Denton: They’ve been together for 33 years. Robyn, too, is a nurse. Has been since she was 17. I wonder if it’s a good thing to know so much about what they’re facing.
Robyn: Yeah. I think it's – from Ray's perspective it's given him this sort of calmness about it all and a very intellectual approach I suppose to it, which has been really nice. It's helped us a lot.
Andrew Denton: Ray’s illness sounds like everybody’s nightmare.
Ray: See, the other problem I have – I'm perfectly healthy. My lungs, my heart, my liver and my kidneys, even now with this disease process inside me, are all within normal range, so that's just going to prolong… To achieve death that's what you need to happen is for your organs to, you know, to cease.
Robyn: He knows – we all know that his prognosis is very poor and that at some stage he will deteriorate and he's not going to have a long life.
But I suppose being nurses, this is how we're compartmentalising things a little bit, so we're just trying to make it enjoyable now and not worrying about what's ahead, but we are having in the back of our mind – like Ray's made plans and all that sort of thing.
Andrew Denton: Despite being a palliative care nurse, Ray’s plans do not involve dying in palliative care.
When did it become clear to you, Ray, that you wanted to take control of your own death?
Ray: When I got home and I started thinking about my situation, because I've had so much experience with other people dying and sometimes there is no total control of somebody's death. You know, there's ways and means that palliative care administer death and that being slowly with what we call M&Ms – the morphine and the midazolam scenario, and one quarter of all people with advanced cancers die from a catastrophic event like a huge bleed, a heart attack, pulmonary embolism, pneumonia.
And then I realised there's quite a margin of error for something to go amiss, you know, because we are in the country here and I haven’t got the full facilities of being in a large centre, you know?
So I came to the conclusion that I should have a bottle of Nembutal on my shelf and see what happens, you know. It would only be used if I was suffering intolerable pain, and that could even be psychological pain. I would never ever use it lightly but having that reassurance that I don’t want to be dependent and I don't want my family to have any trauma with my passing, because I don't think there needs to be. I think it can be quite peaceful and comfortable.
Andrew Denton: Was it an easy conversation between the two of you about Nembutal and taking that step?
Robyn: Nurses tend to, because they see some not so nice things happen. But it's different when you're discussing it as this theoretical thing in the future to when it's actually something that, you know, could happen any time.
Andrew Denton: The illegal drug Nembutal will offer Ray a painless death. But in answering the question of “how to die” it asks an even bigger one: “when to?”
For me that would be the cause of greatest fear – that despite your desire to control what happens you may not be able to.
Ray: The timing of the Nembutal is going to be very important for me because, like I say, I don't know which way the disease process is going to go, with having perfectly healthy organs.
Andrew Denton: It strikes me that you have a very difficult choice ahead of you as to should you take action and when do you take action.
Ray: Yeah, exactly, and this is the nutshell of the whole argument. We’re forced to make choices right through our lives until we get to – the other most important thing in your life is your death, where those choices are taken away from you, and this is what the whole argument is about.
Andrew Denton: Ray calls the Nembutal his “back pocket plan”.
Andrew Denton: When you get the Nembutal home, where are you going to put it?
Ray: That's a good question. It's a very good question.
I'm not telling you.
Andrew Denton: [Laughing] I'm not going to come and take it!
Ray: No, I know you're not. I'm going to keep it at a friend's house. I've got one confidante out of my family group. Because you need to have another person outside your group.
Robyn: We’ve got children running around the house, so that’s a consideration.
Andrew Denton: Why not here though?
Ray: Just in case we get raided early.
Andrew Denton: Ray’s decision to source Nembutal means he has to allow for the possibility that the police will want to investigate his use of an illegal drug.
Ray: So that's the other thing – if I was to administer that medication to myself that my family wasn't present or had knowledge of that.
Andrew Denton: How is it for you, Robyn, that you may not be able to be there to farewell Ray?
Robyn: We'll be there. I'll be there.
Yeah, I want to support him in his – I believe in having a choice. I don't want to sit by the bed for days, 5 days or 10 days – he will get to a stage where he won't be able to swallow or eat or drink, and where he is in the disease process when that happens, we don't know.
Ray: No, that’s it.
Andrew Denton: In the debate about assisted dying in Australia, Ray Godbold’s voice carries extra weight – a palliative care nurse who doesn’t want to die in palliative care. I wondered why.
Andrew Denton: Ray, in your line of work as a palliative care nurse, you would have seen people go through this disease.
Ray: Yeah. I've looked after people with both stomach cancer and oesophageal cancer.
If I was to choose a cancer to have, I wouldn't pick this one.
Andrew Denton: And Ray, you working in palliative care, did you also have a strong view about euthanasia?
Ray: Yeah well I did personally, but it's not something that you would voice when you're working in the palliative care field. You know, I think everybody – if we all sat down on a Friday night and had a few drinks together and people were honest on what their beliefs were, a lot of them would come out and say, “Look, that was a shocking death, we should have done something else to help,” you know. But you've got the legal boundaries, the medical professional boundaries are all, you know, they've got you surrounded and you can't step out or be seen to step out because the next thing you could be accused of using excess morphine or...
But my own personal belief was that I fully supported it because I've been there when lots of people have had terrible deaths that – no matter what palliative care people say, the last 24 to 48 hours of somebody's life can be completely unexpected, you know? And the only options you've got is to make that person unconscious and then you've got the family's sitting there looking at this person who's been in terrible suffering, is now unconscious, and is going to take hours or days or weeks to die. So that's not acceptable I don't think.
Andrew Denton: I asked Ray if there was one particular death that stayed with him.
Ray: The one that sticks with me the most was a gentleman who had existential distress, and he was definitely going to suicide. And he had a very similar cancer to mine actually.
He came into the hospice and he made it quite clear that he was going to kill himself. So they decided on terminal sedation for him, and his wife sat beside his bed for five days. Five days it took him to die, each day having little increments of his morphine and midazolam and his haloperidol, you know – what they could legally give them. You're just waiting for one of his organs to fail – like for him to have a heart attack or respiratory arrest or something like that, but five days is a long time to watch someone die, you know, and to just administer medication. That happened in the hospice.
That's where I think voluntary assisted dying would have been of great benefit, because I was very close to this gentleman's wife, you know, because I'd been supporting them at home for quite a few months, and to see her on a daily basis slowly getting worn down and worn away by sitting there and being a devoted wife, you know – they’d been married for 50 years or something like that...
Robyn: And that final memory of that person, it can be hard to obliterate that. What you remember of that person is that last moment. That might be absolutely awful, whereas if they have a more controlled death, then the final memory won't be as traumatic, so you won't have to deal with that side of it.
Ray: See this goes against the palliative care philosophy that you should not hasten death, but that's exactly what the whole situation was – hastening his death. But it took so long for him to die that I think he was the perfect candidate for active euthanasia.
Andrew Denton: The guiding philosophy of palliative care Ray was referring to – to “neither hasten nor prolong death” – continued to puzzle me. If people die in such unexpected ways, how do doctors know the line to tread between easing somebody’s pain but not assisting them to die? Surely, in the end, it comes down to a doctors’ judgement call?
Ray: It is, and it's totally unjustifiable, and that's where the doctors and everybody have to turn their back, because they are making that decision on the clinical information. Palliative care does a really good holistic admission to the service. They do. They look into your different – if you go to such and such church and you've got all this – they’ll do their best to get the social worker in. But the last 24 to 48 hours with the terminal sedation, that's where I feel it all goes wrong, because you can't – it's up to the person themselves to let you know what is happening, and they put them in a position where they can't express yourself and give your decision because you're unconscious and you're waiting to fade away.
Andrew Denton: What did you mean when you said that’s where the doctors have to turn their back?
Ray: “Thou shalt not hasten death.” Well you're looking at a person who's clearly dying, and say they've got morphine 30 and midazolam 5, in their syringe driver, the little green book tells them that they can only increase that by such and such an amount otherwise the clinical picture becomes too much.
Andrew Denton: Presumably that level of treatment, regardless of the guidelines, varies depending on the individual beliefs of the treating doctor.
Ray: Of course. There’s still doctors that won't give the after morning pill to different people and the doctors have all got their own beliefs, and a lot of them have got religious beliefs, and that comes into the clinical area at times. I’ve seen it. You can't trust a man in a white coat.
Andrew Denton: I don’t think I want to hear that!
It was to be two months before I saw Ray again, in early June. He was noticeably thinner but still, it seemed, very much in control of his life.
So tell me what's happening with your body.
Ray: Well slowly there's signs and symptoms the cancer metabolism is taking over control of my body, so I feel more of a patient now than a person dealing with cancer. I feel that, you know, it's still going to be weeks to months away, I hope, but I'm getting to that stage where I'll need more and more medical attention.
Andrew Denton: Is there a sense of being betrayed by your own body?
Ray: No, there's a sense of being cheated or robbed of a few years, you know. Because I had no indication at all that I had a GI tract problem. I was getting my lower end checked regularly and all this around you is in preparation for me – for my retirement – to enjoy my music, to enjoy the books, to enjoy the garden. That's what I've been striving for – that everything could be nice, you know. So yeah, I do feel robbed of 20 years I reckon. But that's part of understanding that we're only mortal and we're part of the coil that goes round. A friend of ours they had a little baby girl this morning at the Children's Hospital. I'm just making way for them. Yeah.
Andrew Denton: Ray’s most recent visit to his GP had confirmed that all his organs were still functioning perfectly. This was not good news. To die, Ray would need one of his organs to fail – which suggested that the path ahead of him was going to be long and painful. I asked if he had a sense of when – or if – he might take the Nembutal.
Ray: Not a clear sense, obviously. My objective is not to use it, but I’ve got this alien in my stomach and it decides – the problem is once I cease chemotherapy altogether how malignant this alien is, so how quickly it wants to spread to my other organs and help me with the demise.
Andrew Denton: At what point is it right for you to stop chemotherapy?
Ray: Once I know that the drugs aren't working any longer and I say, “We'll stop it now”.
Robyn: His chemotherapy is palliative chemotherapy, so it's not curing. It's just about balancing and making him more comfortable until the disease takes over. And it's helping with eating and that sort of thing. That's why he's having it. People think he's having active treatment, but it's not.
Ray: W e live in hope that I don't cough one day and it is bloody.
Andrew Denton: Because that means you have to go to hospital.
Ray: It means that I have to take the Nembutal, because it's dependent on me hopefully having a patent GI tract for it to be effective, you know.
Andrew Denton: Of course, yes.
Ray: If I haven't got a patent GI track, the Nembutal, it's not in the game. I've got to get it into me as quickly as I can then.
Robyn: So the decision-making with this type of cancer that Ray's got is critical, if he does want to take it, because if he obstructs, then he won't be able to.
Andrew Denton: So how do you make that decision, because you can't foretell what’s going to happen, can you?
Robyn: You just have to go on the symptoms.
Ray: Yeah, when I physically really can't look after myself, when I become totally dependent on other people, and with no disrespect, I'm starting to look like somebody from Changi anyway, you know, during the war, and I'd be mortified if my kids saw me naked and had to look after me. That would mortify me.
Andrew Denton: You said earlier that you might not take it and that in fact – I think you said, “I hope I don't take it”.
Ray: I'm hoping not to, yes. I'm hoping not to, yeah. But like I said, I don't know. We've got to assess as we go from stage to stage, and I know that I'm slowly getting pushed along the line.
Andrew Denton: Ray and Robyn’s children are Rory, 27, Tara, 32, and Ella, 30. As Ella explained, her parents were pretty well known in the district.
Ella Godbold: They have a big reputation in this community. They did work at Wonthaggi Hospital for 23 years together, and nurses are very social people. Like growing up, we'd always have a nurse end-of-year party here and it was always really fun and wild.
Rory Godbold: The rug would get rolled up at one stage of the night. I had a little position in the kitchen where I'd make cocktails for everyone. Dad would get a cocktail book and put all the spirits out, and I'd make it.
Tara Godbold: It was fun. They had lots of fun.
Andrew Denton: A ll the children support Ray’s decision to give himself a choice about how he dies. This is Ella.
Ella: I absolutely understand where he's coming from and where he wants to be. He's been exposed to people dying and he knows the way that he wants to go out, and that’s absolutely fine with me. I mean I know Dad's not going to do it too early, where he's still got stuff to give us, and I trust in his decision. Because that's what scares me is that time is taken away, but I trust that he'll do – he knows when the end is the end.
Andrew Denton: Tara gets it too.
Tara: One of the ladies at my work's mother had the same cancer. She was much older. But she wouldn't even talk to me about what happened in the last stages. She said it's still too distressing for her to be able to talk about.
So I've got a bit of insight from that as well, and then also – and we've had that conversation with Dad – about these are the scenarios, these are the certain things that could happen, and it’s horrific. And we have to live with that as well. Like that's the thing. It’s also not just about him. It's about what we have to live with for the next 50 years as well, and I think in some ways it's a protective measure for us too.
Rory: It's interesting because I think Dad sees it as, “Thank God, I've got this for my family!” and we think well thank God he's got that for him if he wants it, like it's kind of crosses in the air or something.
Ella: And also he always emphasises that him and Mum make the decisions together. It’s not just about him and what he wants, like they’re kind of on the same page about it, and they will talk about it and make sure they're both happy with the scenario.
Andrew Denton: Are you proud of Ray?
Tara: Of course. Absolutely.
Ella: We will be proud forever, you know.
Andrew Denton: When I next saw Ray, only three weeks later, the change in him was shocking. He was painfully thin, moving slowly, bruises and cuts were clearly evident from multiple falls, fluid was dripping from his nose, and deep lesions were on his fingers, as though the cancer was trying to eat its way out of his body.
Ray: I've obviously deteriorated quite considerably and had three falls, but I've also got these wounds that are coming from the inside to the outside of my body, which are causing me great pain. There are splits in the creases of my fingers. It's another sign of progression of my disease. The first step is I get dyspnoea and then I get secretions.
Andrew Denton: What's dyspnoea?
Ray: Dyspnoea is difficulty breathing. And I've got SOBOE, which is shortness of breath on exertion. My voice changes, my nose drips – dah, dah, dah. Lots of secretions. They're coming out.
Andrew Denton: So your body is just falling apart.
Ray: Yeah, yeah, it’s falling apart. Yeah, I'm dying. I'm falling apart really.
[FAMILY TALKING AN LAUGHING OVER LUNCH]
Andrew Denton: As I sat with the Godbolds at lunch, the good-natured conversation and humour was in stark contrast to what we could all see – a man almost literally disintegrating in front of our very eyes.
After lunch Ray told me that he’d just reached a critical moment in his treatment. He’d decided to have the intravenous line, or PICC, delivering his chemotherapy removed. It was a decision even his oncologist struggled with.
Ray: He looks after a hell of a lot of people in Gippsland, and he came out to the waiting room and he yelled out “Raymondo”, which was highly unusual for him. So I went in there and Robyn was with me and we had the conversation and he was going to offer me whatever he could, and then I decided, no. And he turned around and he had tears in his eyes, and I was really quite surprised.
Andrew Denton: Just what does removal of PICC mean? Why was he responding to that?
Ray: It means that all treatment's over. That I would be purely in palliative, and that would be, you know, waiting for me to die.
Robyn: It's a little bit scary, really, I find. You know, the treatment...
Ray: Well it is, if you have no intravenous access to your body.
Robyn: And knowing that that's it. What's going to happen? How quick?
Andrew Denton: Because I remember you saying to me when we first met that once you decide to discontinue chemo that things most likely cascade pretty quickly. Is that still your understanding?
Ray: Yeah, well if I'm right. It's definitely a top-three malignancy – and then the way that it spread before I was even aware of it, you know. But I'm hoping that I get five to seven days from the chemo and then I get a period of time where I'm a little bit better – but that's a day -by-day hope.
Robyn: Yeah. You’ve got nothing left in the tank though. You’ve always had a little bit in reserve.
Andrew Denton: You're talking weeks though?
Ray: Weeks, yeah. I'm only talking weeks, yeah.
But as you can see, I'm really quite alert psychologically and I'm not ready to hop into bed and say, “I'm ready to die”. So it's looking more and more like Nembutal will be an option for me, because I'm just going to starve to death otherwise and be in pain.
Andrew Denton: I guess that’s the other part of the equation for you – how it is for the family?
Ray: Yeah, that's right, and that's where I've got to have that discussion with them, because it's purely not my decision. It's their decision as well.
Robyn: I sort of know that when we get to a certain stage it is going to be discussed, but ultimately it's Ray's...
Ray: Yeah, it's going to be harder. It's going to be harder than what I imagined but...
Andrew Denton: Why do you think it's going to be harder?
Ray: Because saying goodbye, leaving someone permanently is very difficult I think. I've always had my goodbyes but I've always had that, “But I know I'll see you in the future”. But as you can see, I deeply love my family and home, so I'm going to find that a lot more difficult than what I thought. The pain, suffering, whatever that comes to, that's what it comes to, but making the decision that I have to permanently leave all this is going to be more difficult than what I imagined.
Andrew Denton: Despite the pain, and the awareness that his time is running out, Ray’s focus is on something else – a tropical holiday.
Ray: Robyn's really keen to go to Palm Cove, and I'm keen to take her.
Andrew Denton: Tell me about the Palm Cove plan, Robyn.
Robyn: Well, when we first started going out, back in the 80s, on our first holiday we went up to Far North Queensland and we camped at Palm Cove and it was beautiful. And so we just want to escape for a little bit and experience some warm weather. So we decided that we'd go back to Palm Cove.
Ray: Really I've got the one goal, and the goal is to get Robyn up north for a little while. And I bought my board shorts. The lady came to help me and she had to send me to the boys section to get my board shorts. I've gone from a 34, 36 waist to a 14B, whatever that means.
[CHILD SQUEALING WITH PLEASURE]
Andrew Denton: Watching Ray push his grand-daughter Ivy on a swing in the backyard I thought back to something he had mentioned at our first meeting – of how the dying sometimes struggled with existential despair.
Later, when it was just the two of us, I asked if he could describe what that felt like.
Ray: Just, I don't know – despite our conversation and despite everything that Robyn does for me, which is exemplary, it's still a lot of a solo journey. You’re still alone while you're doing it and when you can't – even though I know that whatever I'd ask Robyn she'd do for me or my children or stuff like that, it’s still a lonely experience.
Andrew Denton: Five weeks later, in early August, a text arrived from Ray: “The sooner we speak the better. Getting syringe driver tonight. We should round things off with one last talk so you can understand how indecent this disease is”. Unsure of what to expect, I rang him.
When I got through, Ray told me that a few hours earlier he’d been in a very bad way, delirious and distressed. Because he could no longer swallow, a nurse was called to connect him to a syringe driver that would supply him with medication.
Andrew Denton: So I was a bit alarmed at your text. I could, I wasn't quite sure how to read it but where were you at five hours ago?
Ray: Oh, I was struggling to talk and you know, struggling to get by. Had to have people lift me up to stand up and I could only walk about 10 metres and I'd fall back and, you know, so there was all – it's been a big mess, really.
Andrew Denton: When I last saw you, your body was degenerating pretty rapidly. Has that continued?
Ray: Yeah, I, I'm down to 44 kilos, so...
Andrew Denton: Whoa! Yeah.
Ray: It's, it's pretty thin on my frame.
Andrew Denton: Yeah.
Ray Godbold: So um, I yeah, I don't look good.
But the way that I've picked up over the last three hours, it's turned me round really. But I'm still, way out of the deep hole I was in. And even my kids, we've all had a tear session today.
Andrew Denton: Mm hmm.
Ray: Because we thought that, you know, it's 48 hours at the most, because I couldn't do anything for myself.
Andrew Denton: Despite his rapidly deteriorating condition, a few weeks earlier Ray and Robyn had somehow managed to get to Palm Cove. I asked how it had gone.
Ray: Yeah, well, Palm Cove was a little bit disappointing. It was great seeing our parents – parents! It was great seeing our friends.
Andrew Denton: [Laughing] That's the delirium again, isn't it?
Ray: It is the delirium. It was fantastic seeing them. But there was a weekend when all of Australia got a cold snap of weather. It was freezing and I had to watch everything I did and had to walk about slowly.
Andrew Denton: Oh! I just had this picture of you lying on a deck chair somewhere actually soaking up some rays.
Ray: Yeah, with a great big pair of white plaster across my nose.
Andrew Denton: Yeah, yeah.
Ray: I'll have to send that picture to you.
Andrew Denton: [Laughing]
Andrew Denton: At the airport, on his way to catch the plane to Palm Cove, Ray had a fall – one of many, this one so bad it nearly derailed their plans.
Ray: I went splat, straight onto my nose and my knees.
Andrew Denton: Did you break your nose?
Ray: Oh, yeah, I've got a little bow in it, yeah.
Andrew Denton: Oh.
Ray: I feel it's a little bit too late in life to get it straightened out.
Andrew Denton: Maybe.
Ray: It wasn't exactly, um, a romantic look.
Andrew Denton: A few minutes later, Robyn came on the line. Between the delirium and the constant danger of falls, Ray had become increasingly challenging to look after.
Andrew Denton: It sounds like it's been a pretty emotional day?
Robyn: Yeah, yeah, it's been a really big day, yeah.
Andrew Denton: And how are you coping?
Robyn: Yeah, no, I'm coping alright. I just feel like I'm in a bit of a parallel universe to some degrees. It's real but it's not real, you know?
Hang on I've just got to help Ray get out of bed. He just has trouble from sitting to standing.
Andrew Denton: Sure.
Robyn: Do you want me to help you up, or...?
Ray: [muffled] It's alright.
Robyn: No, he's alright. He'll just stay put where he is for a minute.
Andrew Denton: God I'm tense just listening to this, because this sense that Ray's been falling over so often is very disturbing.
Robyn: Yeah, yeah, it's been – did he tell you about the airport?
Andrew Denton: Yeah.
Robyn: Yeah. There's a good photo of him at the airport after they'd patched him up, with bandages all over his face. It's pretty funny.
Andrew Denton: I told her Ray was planning to send me the photo. I also wanted to know how the last 24 hours had affected their thinking.
Have you discussed the Nembutal at all or is that kind of out of the conversation now?
Robyn: Yeah, we have discussed it, quite a bit lately. And um, yeah, it's still there if he needs it.
Andrew Denton: Is that good to know?
Robyn: Yeah, yeah, it is. And probably, I mean – well when he got confused and had the chest infection and was quite unwell. I thought, “Well that window of opportunity has passed,” because he wouldn't be able to do it. And now his swallowing and his oral intake’s not very good so I don't know even if he could keep it down.
But then, you know, it may be possible, maybe not, but he's just going to see what happens. It's interesting, though, because all these ideas that you have, coming up to this stage, you know, yeah, I don't know, it's just different when you're actually in it. You know, like with Ray getting confused – that wasn't something that I had considered. I'd considered his physical demise but not that mental side.
Andrew Denton: Yeah. No, I was going to say I just, I really – my thoughts are with you for the days ahead because they're not going to be easy days.
Robyn: No, no. It's not going to be easy at all. But we'll get through it I suppose. Everyone does.
Andrew Denton: When Ray came back on the line I asked what his thoughts were about the Nembutal.
Ray: Robyn and I have decided we're going to keep it here and we'll see how this clinical pathway goes, and if the pain or the vomiting or whatever got too severe, I would still be open to taking it, but if I can control the pain and the other symptoms on the palliative care pathway, I'll continue on that, as we can.
Andrew Denton: Knowing that the Nembutal's there, what does that mean for you?
Ray: Oh yeah, it's still a comfort, you know?
Andrew Denton: If you’re having trouble swallowing, which is I believe part of the reason you got the syringe in, is that going to be an issue if you decide well maybe it’s time for Nembutal.
Ray: Well possibly because I don’t think you can go much lower than 44 kilograms, on my frame. But I've just got to go with what I feel is the right thing for me and I think that's a reasonable stance, you know?
Andrew Denton: Well that's the whole point isn't it? About choice.
Ray: Well yeah, it's all about choice. We don't know what's going to pan out in the end. I still could have something catastrophic happen to me.
Andrew Denton: Are you scared? Are you...
Ray: No, not scared. Like I said, I've got good children I can talk to, you know? I feel like I'm very well supported. I've come to the conclusion that it's just inevitable.
Andrew Denton: I'm going to go because I'm mindful that you probably need to just rest up, but I'm not sure when we'll talk again, but in case we don't, it's been really good talking with you and ah, my love to you.
Ray: Yeah, no worries, mate. Thank you. It's been fantastic talking to you as well.
I'll send the photo of me at Tullamarine airport, alright?.
Andrew Denton: [Laughs] OK. It was good talking to you.
Shortly after I hung up, the photo arrived. It shows Ray, sitting in a wheelchair, a jaunty hat for the tropics on his head, sticking plaster all over his nose and forehead, and a big smile on his face.
Two weeks later, Ray died. He was 59.
Andrew Denton: Four hundred people turned up to farewell Velvet Ray. The three kids spoke and some of Ray’s beloved blues music filled the room.
A fortnight later, I sat down with the family one last time.
Andrew Denton: Robyn, as you got into those last couple of weeks what was the thinking about Nembutal?
Robyn: Um, well, he got quite acute delirium, which meant that he was quite confused. He came in and out of it, but um, yeah. And then, you know, we had quite lucid discussions and stuff, and he felt that if he was comfortable with palliative care, he was happy to take that approach. He wanted to die at home. He wanted to die in his bed. So we did discuss Nembutal. He said, “That's my backup plan, but I'll try and go with the system as it is”. And I think probably because of the repercussions, because he wouldn't be here to have to deal with any flack.
Andrew Denton: What was he concerned about?
Robyn: Well, I think he was concerned about the legal ramifications and, looking back in hindsight, I just feel that when he was well enough to take the Nembutal he didn't want to, and I think Ray, as much as he, you know, came across as being prepared – he was prepared mentally, when it actually confronts you and you actually are dying, he didn't want to go.
So it's been interesting. It hasn't changed my view on having a choice at the end of life but it's made me realise it's so complex. It's a hard thing to end it by your own hand – to get that Nembutal out yourself, which is what he would've had to do, otherwise we're assisting him. It's hard. It's really hard to do, no matter how you've processed that thought intellectually; it's extremely hard.
Andrew Denton: As you said, there's nothing simple about this. There wouldn't be a more experienced person in these matters than Ray. But even for him, there was absolutely no way of knowing how things were going to unfold.
Robyn: Yeah. And things cascaded and, yeah, it sort of was out of his control.
He was quite disorientated and then, the day before he went to hospital, we sat down and we had to have the conversation with him. We all were there and said, “Do you realise that you're dying?” Like, “That it's you that's dying?”
Tara: Because he thought he just had a chest infection and he was going to get better, and he said that a few times. But then he said something and I was just like, “Do you know what's happening, Dad?” And he just said, “No”.
I went and got Mum because I was like, I don't want to do this. And then we were like, “Do you remember?” And he was like, “Yeah. Oh yeah!”
Rory: But it was difficult to say that to him.
Andrew Denton: To tell him he was dying.
Rory: I found that moment really hard and I had to keep leaving the room, because to say, “You've got cancer; you're going to die. We’re trying to make you comfortable”... And you were saying things like, “It's OK, it's OK to go to sleep, it's OK to let go”. That was really – the reality of that for me was really...
Robyn: Y ou know how he used to talk about existential distress, well we did get to see a very classic demonstration of that. And at one stage – you know how he talked about not wanting to be cold, well he, in the end he couldn't keep his clothes on. And the poor kids one day were exposed to him. He pulled everything off, and his breathing – and we were just having trouble getting enough drugs into him, and he was wandering around the house and he had to – Rory said I was a ninja trying to get the drugs....
Rory: He was walking down the corridor and Mum was getting the syringe in and...
Tara: And I had a dressing gown trying to cover him up, and he's like, “No!”
Andrew Denton: Yeah. Geez, not a scenario you could ever have imagined happening in your lives.
Robyn: No, and the last little bit before he went to hospital was the most distressing thing I've ever seen in my life.
Andrew Denton: Can you tell me about that?
Robyn: He woke up at five o'clock in the morning and he was really agitated, and he just kept trying to get up but he couldn't really walk that far.
He was so short of breath. It was just horrendous. Absolutely horrendous. And I was just giving him medication and the kids got up. And, you know poured so much, and I was giving him double, triple, and nothing seemed to work and that's when he asked for the Nembutal.
Tara: “Get the Nembutal! Get it! That brown bottle up there.” Oh it was awful!
Rory: Yeah, it was the moment for him.
Tara: Yeah, he was ready. He wanted to.
Andrew Denton: Was he – do you think he was lucid when he said, “Get the Nembutal”?
Tara: A hundred percent.
Rory: Because I had to explain to him that he wouldn't be able to drink it, and he understood.
Andrew Denton: Because he couldn't swallow?
Robyn: He just kept regurgitating any – he could get a mouthful of water down, but you have to kind of take it when you're in control, and that's why I think the law, that's why it brings it home about the laws. Because if we could've given him something intravenous or by some other form if it was legal, then we could've relieved that distress.
Andrew Denton: Yeah, even a syringe driver which he could control.
Robyn: Yeah. But if it's legal then, and you've expressed the wish and all the forms are done and whatever, hopefully someone else could administer it. Is that how it works in...?
Andrew Denton: Look yeah, that's how it works in Belgium and the Netherlands.
Robyn: Yeah, which would've been ideal for Ray. That would've been the time.
Ella: It was very stressful. Like we were all trying to comfort him, and it was – I had to walk out of the room at one point because it was so hard to see. It was awful! I will never forget the look on his face, ever.
Rory: He knew he was dying that morning but because he was so short of breath I think he was really distressed. He was like, I don't want to die in this way. I don't want to suffocate to death.
Robyn: I have seen a lot of people die, in my career and he was the most distressed of anyone I've ever seen.
Andrew Denton: He's like the living example of why there should be a law.
Robyn: In some ways it's solidified all our beliefs about why he was fighting.
Andrew Denton: In the end, having tried everything to help him, the decision was made to take Ray to hospital.
In an ideal world, in specialised palliative care, one of the suite of options they offer to somebody like Ray who is in his last hours is the option of a peaceful death.
Robyn: Yeah. In the end, he basically had terminal sedation, which is they just upped everything to max. He had the biggest dose of morphine they've seen at the hospital
Andrew Denton: How much better do you think it would've been if this was legal and it could've been openly discussed and you could've had your GP with you if need be, that it could've been something there'd be no questions about would there be police involved afterwards. How much difference would that have made to the conversation with all of you, do you think?
Robyn: Oh, much, so much easier. Yeah. We could've, yeah. Because I think that was a concern for him because he would, you know, he would've been gone and if there was any consequences of him taking the Nembutal, then the family had to deal with it and not him
Ella: I understand it a whole lot more now – what it means, why we should be talking about it and why we should be advocating for it.
I will always look back and think Dad always died with dignity, because I remember him in himself and not the way he died, although it will haunt me. But I absolutely understand the point of what it means to die with dignity and how every case is so different. It's not just a matter of saying that this is the law; it's just about having choice. It's not going to suit everybody. But there are certain circumstances with how people die that are quite awful and often it won't apply to a lot of people, but in circumstances like Dad's, it would've been so comforting for it to have been applied to him.
Robyn: I think the medical system intervenes, we intervene at every stage of life, constantly intervening. And it's bizarre how we can't do it. And in the end we gave Ray terminal sedation, you know. They just upped the morphine, and it was a dose of morphine really, in the middle of the night, that caused him to die.
Andrew Denton: Ray Godbold wanted to die at home, in a dignified manner that he could control and that would spare him and his family the worst of his dying. In the end, he got none of those things.
While the knowledge of having an illegal supply of Nembutal did provide him with comfort in his dying months, ultimately it wasn’t enough.
Had Ray lived in Oregon or The Netherlands or Belgium, their laws for assisted dying would have meant he could have had the best that palliative care could offer, with the clear understanding that should the suffering become too much, he would then have had the option of dying peacefully and as he wanted.
Instead, because there was no law in Australia to protect him, he had to plan his own death in secret. And when his dying ran out of control, there was no-one that Ray and his family could legally turn to, to help him in his last wish.
Instead of being able to farewell his family, the only option offered to Ray was to die in a medically induced coma, the memories of his dying hours leaving those he loved with an indelible scar.
Doctors who oppose assisted dying in Australia like to reassure us that there’s no need for it because everything can be taken care of by palliative care. But as Ray knew – and as his death tragically shows – that is not always true.
None of us know how our own death is going to be. All we know for sure is that it’s our own. And because it’s our own, what Ray sought – and many others like him – is a choice about how we face it, not to be told by others that we can only die in ways that satisfy them.
If you’d like to know more, head to the episode page at: wheelercentre.com/betteroffdead
Andrew Denton: In the next episode of Better Off Dead: FUD. Fear, Uncertainty and Doubt – the three seeds sown by opponents of assisted dying that have been reaping them a rich harvest of political inaction for years. For the first time, we’re going to pick apart those little seeds of FUD and reveal the tactics still winning the hearts and minds of Australian politicians today.
[SONG ‘FORTY EIGHT ANGELS’ BY PAUL KELLY]
Episode 13 - Now They’re Killing Babies
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is dying.
Anthony Fisher: Thank you, Mr Chairman and my alma mater, Sydney University and its Catholic society, and Peter Singer.
Andrew Denton: I’m in Sydney Town Hall listening to a debate about voluntary euthanasia. Arguing the case for is the well-known Australian ethicist, Peter Singer. And against is the Archbishop of Sydney, the Most Reverend Anthony Fisher.
Anthony Fisher: There is bracket creep in euthanasia. First we’re told it’s for competent informed consenting adults only. Then it’s extended to the incompetent, the unconscious, babies.
Andrew Denton: As Fisher speaks it soon becomes clear that what I’m listening to is a master class in FUD – fear, uncertainty, and doubt – the seeds sown by opponents of assisted dying to great effect down the years.
But what lies inside those little seeds of FUD? Today – for the first time – we’re going to find out.
Andrew Denton: My name’s Andrew Denton. You’re listening to Better Off Dead.
There are no more committed opponents to assisted dying than the Catholic Church. They have thrown resources, and the full weight of their political influence, against it wherever it has been proposed. Look closely at many of the websites, blogs, research institutes, and organisations, fighting assisted dying around the world and you will most likely find the fingerprints of the Catholic Church there somewhere.
Which is why the words of Archbishop Fisher, one of Australia’s most senior Catholic clerics and a man who commands the ear of many politicians, are worth listening to.
Anthony Fisher: There is bracket creep in euthanasia. First we’re told it’s for competent informed consenting adults only. Then it’s extended to the incompetent, the unconscious, babies. First it’s for those who judge their own lives to be too burdensome for them. But how quickly societies that go down that path start making the judgment that those lives are too burdensome for others. Putting granny out of her misery so easily becomes putting granny out of our misery. That’s exactly what’s happened in Holland and in Belgium. In Holland it was supposed to be for people in extreme suffering, consenting adults, but after ten years of that experience it became legal to do it for. Having classed the frail, the elderly, disabled as expendable the community is likely to do less for them and leave them feeling worthless.
Andrew Denton: It’s powerful stuff. A slippery slope that takes in the weak, the non-consenting, the elderly, the disabled, even babies. But, as I listen, I can’t help wondering… where have I heard this before?
Nancy Elliott: Elder abuse? Elder abuse is excellent. There is nobody in the world that denies that there is elder abuse,
Andrew Denton: That’s Nancy Elliott from New Hampshire speaking at an anti-euthanasia convention I’d attended in Adelaide earlier in the year. Nancy is explaining what lines of argument work best when trying to influence politicians.
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.
Andrew Denton: Nancy has lots of suggestions for good arguments to run.
Nancy Elliott: Suicide contagion is another very good thing to point out . . .
…Doctor predictions - they can be wrong…
The other thing that we point out is when suicide is a treatment option, all care goes down fade down…
Andrew Denton: Nancy knows that the quality of the argument is less important than the quantity.
Nancy Elliott: When you have lots of arguments, if one argument gets blown out of the water, you still have more, and each argument will reach somebody else.
Andrew Denton: Experience tells her that even one seed of FUD, properly sown, can be very effective.
Nancy Elliott: You only have to convince legislators that they don't want this bill. I mean you don't have to win their hearts and minds; all you have to do is get them to say, “Not this bill,” and then you have got your win.
Andrew Denton: Over the eight months I’ve been listening to the arguments against assisted dying, it’s clear that Nancy’s playbook, focussing on the elderly and the disabled, is being put to good use. Here’s US litigator, Catherine Foster.
Catherine Foster: Prescribed suicide creates broader opportunities for elder exploitation and the abuse of individuals with disabilities.
Andrew Denton: And here’s Australian doctor, Nick Cooling, explaining how his home state of Tasmania narrowly avoided adopting a law for assisted dying.
Nick Cooling: Our messages were that we had very vulnerable people in Tasmania, particularly the elderly and those with disabilities. They were at great risk in this particular legislation.
Andrew Denton: Certain ideas occur regularly too. For instance, that assisted dying laws make people think some lives are "not worth living".
Alex Schadenberg: Once you legalise it, some physicians are going to say "I agree your life is not worth living. That's reasonable to me", but you can't separate the prejudices or the attitudes of the person when they're agreeing that your life is not worth living.
Andrew Denton: That’s Canadian Alex Schadenberg. And this is Father John Fleming who played an important backroom role in overturning the Northern Territory’s euthanasia law in 1997.
Father John Fleming: We have to penetrate into the mentality that gives rise to it, and that is that there are some lives that are simply not worthy to be lived...
Andrew Denton: Sometimes, key phrases are regularly trotted out. Father Fleming again.
Father John Fleming: "I begin to suffer with my mother who is seriously ill’, and then it is, "Please put Mum out of my misery"…
Henk Reitsema: The temptation can be there to try and put somebody else out of our misery because it is so hard to see them.
Andrew Denton: Which brings us back to the Most Reverend Anthony Fisher.
Anthony Fisher: Putting Granny out of her misery so easily becomes putting Granny out of our misery.
Andrew Denton: It’s FUD. Fear. Uncertainty. Doubt. Words and phrases that, taken at face value, sound alarming.
Let’s go back to Archbishop Fisher’s speech and see if we can spot the seeds of FUD. This little bell (Ding!) will help you identify them.
Anthony Fisher: There is bracket creep in euthanasia. First we’re told it’s for competent informed consenting adults only. Then it’s extended to the incompetent — the unconscious (Ding!) babies (Ding!) First it’s for those who judge their own lives to be too burdensome for them. But how quickly societies that go down that path start making the judgment that those lives are too burdensome for others (Ding!) Putting granny out of her misery so easily becomes putting granny out of our misery (Ding!) That’s exactly what’s happened in Holland and in Belgium. In Holland it was supposed to be for people in extreme suffering, consenting adults, but after ten years of that experience it became legal to do it for babies (Ding!) Having classed the frail (Ding!) elderly (Ding!) disabled (Ding!) as expendable (Ding!) the community is likely to do less for them (Ding!) and leave them feeling worthless (Ding!)
Andrew Denton: When you listen to that in one go it sounds deeply sinister. The strong impression Reverend Fisher wants you get is of a law that allows people to kill babies, grannies, the unconscious, the incompetent, the disabled, the vulnerable and the worthless. And, once they are doing that, who knows where they will stop?
But what happens when you look at this string of emotive and unsupported allegations more closely?
Let’s unpack those little seeds of FUD and see what’s really inside them. First up…
Anthony Fisher: First we’re told it’s for competent informed consenting adults only. Then it’s extended to the incompetent… (Ding!)
Not true. The very foundation of all these laws, wherever they exist or wherever they have been proposed, is that you can only be eligible for help to die if you are mentally competent.
Then it’s extended to the incompetent, the unconscious … (Ding!)
Andrew Denton: Misdirection: The use of the word "unconscious" suggesting that patients are being killed without their knowledge or consent. Yes, sometimes unconscious patients are given, what appear to be, life-ending medications by doctors in Belgium and the Netherlands - just as they are in Australia. The numbers are small, and what careful, peer-reviewed research has shown is that they refer to patients who are in their dying hours, who are no longer able to communicate because they are in a coma, and whose distressing end-of-life symptoms doctors treat with increased doses of drugs – not to kill them, but to try and relieve their suffering, exactly as palliative care physicians do around the world. Nothing sinister to see here.
But back to the seeds of FUD…
Anthony Fisher: How quickly societies that go down that path start making the judgment that those lives are too burdensome for others (Ding!)Putting Granny out of her misery so easily becomes putting granny out of our misery (Ding!)….
Andrew Denton: More misdirection. To suggest that we might judge granny’s life as so burdensome that we would put her out of our misery, is to imply that others are deciding whether or not granny should die. The central point about euthanasia and assisted dying laws — one that opponents will do almost anything to distract you from – is that they are voluntary. No-one can decide that you should die but you. You have to ask for help to die. Even then, because the safeguards are stringent and you have to have a compelling medical case, you may not be granted that help. In the Netherlands, for example, two-thirds of all euthanasia requests are declined. And, if you are granted the right, you can still change your mind. More than 30% of people in Oregon who are given life-ending medication, in the end choose not to take it.
Here’s another seed of FUD.
Anthony Fisher: In Holland it was supposed to be for people in extreme suffering, consenting adults, but after ten years of that experience it became legal to do it for babies (Ding!)
Andrew Denton: Omission of facts. Designed to create the impression that euthanasia laws in the Netherlands have been extended to allow doctors to kill babies. This is a significant piece of FUD-ing and I’ll come back to it later.
Finally, this scattering of FUD seeds.
Anthony Fisher: Having classed the frail (Ding!) elderly (Ding!) disabled (Ding!)as expendable (Ding!)...
Andrew Denton: More misdirections. That use of the word "expendable" designed to plant the idea that others are deciding who will die and who will not – once again, completely overlooking the voluntary nature of these laws.
Anthony Fisher: ..the community is likely to do less for them (Ding!)
Andrew Denton: No evidence there at all, just a completely unsubstantiated claim.
Anthony Fisher: …and leave them feeling worthless (Ding!)
Andrew Denton: Another unsubstantiated claim. What proof is being offered that it is these laws making people “feel worthless”? How are they doing it? Who are the people being made to ‘feel worthless’? One thing that became crystal clear when I spoke to doctors in the Netherlands, Belgium and Oregon is that, when someone requests help to die, very careful steps are taken to rule out the possibility that they may be being coerced, or made to feel a burden, by others .You can hear more about this in earlier episodes.
But pay close attention to the groups named by Reverend Fisher as being made to feel worthless and expendable - the frail, the elderly, and the disabled.
Nancy Elliott: Elder abuse is excellent. The disability argument is really kicking it.
Andrew Denton: As Nancy Elliott has shown us, it’s no accident they’re the ones being singled out.
Let’s start with the disabled.
Kevin Yuill : Dignity or dignified death. That means I would rather die than live like a disabled person. That is what they are really saying.
Andrew Denton: That’s academic Kevin Yuill addressing the anti-euthanasia convention I attended in Adelaide. At the time, I was puzzled to see people there in wheelchairs. To that point, none of my research indicated that people with disability were in any way singled out, or threatened, under these laws. Clearly I was missing something. So a few months later, I sat down with the warm and darkly humorous, Joan Hume. A member of the anti-euthanasia advocacy group Lives Worth Living, Joan has been in a wheelchair since she was 23.
Joan Hume: It was in November 1971…
Andrew Denton: Joan was a teacher running late to get back to her school. Rather than catch the bus like she normally did, she got a lift with a colleague.
Joan Hume: We were about two blocks from the school. He wasn't paying attention. He was too busy yacking, and I said to him, “John, the s- ...” and that was all I managed to get out, because he had gone through the stop sign. The car hit him, kind of T-boned him. Our car spun around. I was thrown sideways, and my neck was broken instantly, and I was instantly paralysed.
Andrew Denton: And does that moment replay in your head often?
Joan Hume: Not so much now, but it did for many years. I have to say that I have never lost the sense of great loss and grief.
Andrew Denton: Not only had Joan’s world changed forever, but the way the world saw her changed too.
Joan Hume: I first of all had to get used to being stared at, and that was something that I had never had to deal with before. I absolutely hated it with a passion. I could not bear the way people looked at me, and I was very defensive and angry: "What? You've never seen anybody with three heads before?!" Or, you know, like silly kind of childish remarks, but it was a way of lashing out. And I still get angry. I mean most of the time I don't.
Andrew Denton: Tell me about Lives Worth Living, what is that group?
Joan Hume: There is a group of us with quite severe disabilities who were very concerned that the whole kind of language and propaganda around the so-called right to die with dignity was completely ignoring the disability voice, and our arguments are based around the fact that there is a lot of blurring of the lines between terminal illness and severe physical disability and definitions of profound suffering, Because all of us in our lives had encountered experiences where people have said – things like, "Well if I were you, I would have committed suicide", based on no knowledge about me, and I have had many people say to my face that my life is of less value than somebody else, and this is the reason I am so opposed to euthanasia.
Andrew Denton: Joan does not believe there can ever be a safe law for assisted dying.
Joan Hume: Look, you can put every safeguard in under the sky, and you will find that there will be somebody who will abuse it – if somebody wants to commit suicide, fine, go ahead, and do it. But it is when you give permission to somebody else to do the dirty work for you and you legislate to have that happen, there are bound to be abuses, and who are the people who are most vulnerable? People who are very aged and who have dementia, and people like us who have disabilities.
Andrew Denton: Describe to me the kind of society you fear will unfold for people with disability should this become a law.
Joan Hume: I believe because it is caught up in the health system it irrevocably corrupts the relationship between the patient and the doctor.
Andrew Denton: In what way?
Joan Hume: Well the Hippocratic oath is about aiding people to live and curing people. This is about helping people to die for whatever – and it is not even, when you say assisted dying it is not necessarily that they are in a state of terminal illness. We have only got to see what happens in Belgium. I mean, they are extending it to children, to people with psychiatric illnesses. In fact, they are virtually extending it to a kind of euthanasia on demand for whatever reason that you choose to have. So it is not as if it stops at somebody who is terminally ill.
Andrew Denton: It’s worth noting that, even though the vast majority of people who use the euthanasia laws in Belgium are terminally ill, they were never written only with terminal illness in mind. The entry point to be eligible for help to die is defined as ‘unbearable and untreatable suffering’, which could include, for example, anything from multiple sclerosis to a severe stroke. I put this to Joan.
In Belgium and the Netherlands their frame of reference is unbearable and untreatable suffering.
Joan Hume: Correct, and when it becomes unbearable suffering, this is where terminal illness is conflated with disability.
Andrew Denton: By who?
Joan Hume: Well, not only by legislators but by people who are ignorant about what actual disability means. I mean, there are people who look at me and look at other people with disabilities and think our lives are lives of unbearable suffering.
Andrew Denton: Let me ask you a question then. Let us say the option of euthanasia was available to you, would you take it now?
Joan Hume: No.
Andrew Denton: Can you see yourself taking it at some point in the future?
Joan Hume: No.
Andrew Denton: Isn't this the central point? It is entirely your choice as to whether or not you apply for the right for euthanasia.
Joan Hume: Yes, but you see, I don't know whether if in, you know, another 10 or 15 years' time or however long I've got, you know, that I might not have a form of dementia and other people make decisions about the value of my life, because I know that there are doctors in hospital in emergency rooms and in intensive care who are making value judgements about the lives of people with disabilities.
Andrew Denton: To your knowledge do people with disabilities in Belgium and the Netherlands and Oregon, is their experience the kind of experience that you are afraid will happen here? Is it one where they are devalued and coerced and where they are encouraged to die because they are less productive/worthwhile members of the community?
Joan Hume: Well, from what I have read, I certainly feel that people with disabilities are – if not so much in Oregon, but in America – through Not Dead Yet, which is where I get the literature from and they are very opposed to it for a whole range of reasons. Some of which I have outlined today, and they kind of see it as a kind of creeping cancer, in a way.
Andrew Denton: There was no doubting Joan’s fears were genuine. Based on her lived experience of being made to feel devalued in the eyes of others, I could understand why she felt that way. And looking at the Not Dead Yet website where much of her information was coming from, it was easy to see how those fears might be amplified. But there was nothing I could discover, in either the official figures from overseas or from talking to doctors in Belgium, The Netherlands or Oregon, which supported those fears - the opposite in fact.
Knowing that Joan was unlikely to be receptive to the voices of doctors working within a system she fundamentally mistrusted, I told her about the people I’d spoken with, instead, who are facing exactly the same challenges in life she is – representatives of peak disability groups in Belgium, The Netherlands and Oregon.
If anyone could tell her whether or not people with disabilities felt threatened living under these laws, it would be them. This is what they had to say.
Illya Soffer: My name is Illya Soffer. I am the director of the Dutch umbrella organization for people with disability and we are called [Lederin] and it means something like “everyone in”. Our organization represents 250 organizations for disabled people.
Andrew Denton: Anti-euthanasia groups argue that a euthanasia law means that the disabled may feel coerced into ending their lives early so as not to be a burden on carers or the wider society. Has that been the experience of The Netherlands?
Illya Soffer: No, I do not have that suggestion. People might feel pressured in our society or might feel that they are not being considered of value in our society, but that is not different from their feeling before or after the euthanasia law. I think this law has got nothing to do with it.
Andrew Denton: Are there adequate safeguards in the law in The Netherlands to ensure protections for disabled people with euthanasia?
Illya Soffer: I think the most important protection in this law is this issue on your own judgment but there’s also, another protective element is that it should always be in a dialogue and there’s always a second or maybe even a third opinion of an independent doctor so someone else other than your own practitioner must assess the situation and look if all conditions are set.
The other protective issue is, there must be a case of unbearable suffering. And the unbearable suffering must also be, without a perspective on improvement.
Andrew Denton: Cannot be treated.
Illya Soffer: Yes it cannot be treated and it will not improve at all. So there must be really proof for unbearable and not improvable situation, and this must be assessed by two or three doctors and also the family around and the person itself. If you look in the Netherlands I think you see more people complain on how strict the procedure is than on how coercive it might be for people who are vulnerable to these kinds of practices.
Andrew Denton: No complaints from the disabled in The Netherlands. Next up, Belgium.
Pierre Gyselinck: My name is Pierre Gyselinck. I am president in Flanders of the Catholic Association of Persons with Disabilities, and from there on I have been elected as the president of the Belgian Disability Forum.
Andrew Denton: Do you have any sense that since the law was introduced here over a decade ago that people with disabilities have felt more vulnerable?
Pierre Gyselinck: I have not, and we do not have any knowledge about it because otherwise our members in the annual general assembly would have said to us, 'Please act against something because we have heard that rumour'. But I am sure, in my opinion, and in the opinion of BDF, we have no fear that people with disabilities are more vulnerable since that law was installed.
Andrew Denton: Is there any evidence that the availability of euthanasia is seen as a cheaper option than providing quality care for disabled people?
Pierre Gyselinck: No, frankly, no.
Andrew Denton: Is there any evidence that some disabled people see euthanasia as an option rather than feeling that they may be a burden on someone else?
Pierre Gyselinck: Of course that's a personal view. For example, I, Pierre, at a certain moment I feel that I can't go on any further with my disability, and I am in a terrible situation, psychic and painful distress, and I decide now, here, that it is going to stop. Then I can confer with my doctor and see what I, Pierre, can do. That gives me a possibility, but if I do not feel that if I am not up to do that, why should I do it? No, I don't think that's really an issue.
Andrew Denton: Do you believe that there are enough safeguards in the law as it stands for people with disability?
Pierre Gyselinck: I am not a lawyer so I do not know the laws from A to Z, but I know for certain that it is not something that with some click you can get. When there is the demand for help to go to the end, then you have to see a doctor. That doctor he has to agree to do it
No, it's something that is very elaborate. It's very safe, I am sure.
Andrew Denton: No concerns from the disabled in Belgium either. Finally, to Oregon.
Bob Joondeph: I am Bob Joondeph. I am the executive director of Disability Rights Oregon,
We are funded to represent the civil rights of people with disabilities in Oregon.
Andrew Denton: Has there been any sense since the law was introduced in 1997 that disabled people have become more vulnerable?
Bob Joondeph: The data would not bear that up. Since the law has been passed we have not received a complaint from anyone, other than a complaint from a person who was paralysed who was concerned that the law discriminated against them, because the law requires a person to self-administer medication and they were physically incapable of doing that. But in terms of a person complaining about being exploited under the law, that has not happened.
Andrew Denton: Is there any sense that people with disabilities feel their lives are in some ways devalued by the existence of this law?
Bob Joondeph: I think some people feel that way - certainly symbolically, and that again is a legitimate concern because people with disabilities have systematically been devalued by society. However, I just have not seen the evidence that this particular law has been applied unequally.
Andrew Denton: Do you see any evidence that people view death with dignity as a cheaper option than providing quality care for people with disabilities?
Bob Joondeph: Not in Oregon. One of the, very convincing arguments for our death with dignity law has been that palliative care has improved tremendously in Oregon since its implementation, so that people have better choices to make. If you are giving people reasonable options in terms of how to deal with the end of their life, then I think there is less opportunity for abuse.
Andrew Denton: Is there also something about the suggestion that disabled people are more vulnerable under these laws - that they somehow have less control over their lives than other people – that is a little patronising?
Bob Joondeph: It is a lot patronising, and one of the ironies within the disability community, which many have pointed out, is that on the one hand choice is a very important premise for disability advocacy: that people should have meaningful choices in their lives; but of course this is a choice that some people think should not be offered to people with disabilities, and their argument is that those people may be more vulnerable.
Andrew Denton: Three peak disability groups, in three places where laws for assisted dying exist, none of them reporting any abuse or coercion of people with disabilities. A very different picture to the seeds of FUD planted by Reverend Fisher.
When I put the responses from these three disability groups to Joan she was a bit taken aback.
Joan Hume: Well, I am sorry you have kind of thrown this at me without – obviously you have done a lot more homework than I have done.
Andrew Denton: And, look, I am not saying this to one-up you, clearly. Your concerns and questions are entirely valid. Your lived experience I would not deny for a second. I think the sorts of things you are raising need to be heard, which is one of the reasons I am very happy to talk to you. But I also think that you need to hear these things.
Joan Hume: I am certainly happy to.
Andrew Denton: B ecause they are absolutely relevant to you.
Joan Hume: Yes, yes. Well, I would like to get those names and contact details and certainly be in contact with them, because I am open to arguments that would reassure me in other ways, and if the people with disabilities living in Belgium and in the Netherlands feel that way, certainly you have managed to seek them out. I have not as yet, and so that is more of a comment on me, I think.
Andrew Denton: I respected Joan for being prepared to keep an open mind. But I also appreciated how difficult that must be for her and, doubtless others, in the disability community. Even though there is no credible evidence that the disabled are being in any way coerced or made to feel vulnerable in places where laws for assisted dying exist – in fact there’s a great deal of evidence to refute it - nonetheless that’s what some in the disability community are consistently being told.
Fear. Uncertainty. Doubt. Once they take root, those little seeds of FUD are very hard to dig out.
Having seen that the disabled are not under threat, what of the elderly?
Remember Archbishop Fisher’s list of those who would be ‘classed as expendable and made to feel worthless - the frail, elderly, disabled? How did he put it?
Anthony Fisher: Putting granny out of her misery so easily becomes putting granny out of our misery.
Andrew Denton: Let’s put aside, for the moment, that no evidence proving a link between elder abuse and assisted dying laws is offered by Reverend Fisher. Let’s ignore the reality that it is often the elderly - wishing to avoid the worst of their dying - who are most grateful that these laws exist. And let’s pretend that these laws aren’t voluntary and that we could, indeed, decide that granny should die. Let’s just assume that Reverend Fisher is right – that "putting granny out of our misery" is the inevitable consequence of these laws.
If that’s true, then it follows that the elderly in Belgium, The Netherlands and Oregon must be leading very precarious lives.
Once again, when I asked those charged with running the systems in these places about the incidence of elder abuse under their laws they reported no signs of it – and clear measures to prevent it.
But, to be sure, I decided to get a perspective from people who aren’t partisan in the assisted dying debate, but who are entirely partisan to the needs of the elderly – representatives of the elderly themselves.
Joeri Veen: My name is Joeri Veen.
Andrew Denton: Joeri Veen is the spokesperson for ANBO, one of the three big organisations representing seniors in the Netherlands.
Joeri Veen: We represent about 180,000 senior citizens. We try to represent them in the political field but also in society as a whole.
Andrew Denton: Speaking specifically to euthanasia laws, opponents of the laws say that there is a danger that once you legalise a way of dying that the vulnerable, the elderly, may feel that this is an option they should take, that they should end their lives early. Do you see any evidence of that amongst the elderly?
Joeri Veen: No I do not see that at all and I think that before taking stances like that you should really look at how the law is arranged. Some conditions have to be met before somebody is allowed legally to end their lives by euthanasia law – a doctor has to investigate and really has to prove that someone is suffering .
It's not like â€‘ sometimes we get the feeling that people think that, "Okay, I'm done with this. I'm done with life. Just give me a pill". It doesn’t work like that at all. There are strict laws and it's really difficult to do that.
What's very important here is that nobody else is in control of that decision but the person themselves. They decide and they have to convince a doctor that is they that they decide, that it is their will. Also we train doctors to be very wary of for instance family that is pressurising people into making a decision like that. We have a lot of research and this. It's almost unheard of that this happens.
Andrew Denton: Since the law was introduced in 2002, do you get any sense at all that the elderly feel more insecure because these laws exist?
Joeri Veen: No, the opposite is true. Imagine that you feel like you're in a lot of pain and misery or you get ill. People feel stronger now because they can make these big decisions for themselves and they have a lot of control in that. So no, I think it's almost unheard of that the elderly feel more as a burden and the opposite is true. They feel empowered by this, it strengthens them.
Andrew Denton: So, in the Netherlands, the elderly are actually being empowered by these laws. Perhaps it’s in Belgium that they’re being abused?
Mie Moerenhout: My name is Mie Moerenhout, and I'm the director of the Flemish Council of the Elderly.
Andrew Denton: Mie Moerenhout’s organisation represents the elderly from Belgium’s most populous region, Flanders.
Mie Moerenhout: And we have many organisations who are members of our organisation.
Andrew Denton: Do you detect any concerns from older people that they feel vulnerable or a burden on their community or on their families because of these laws?
Mie Moerenhout: We have no signals that are problems for the elderly since the beginning of the law of euthanasia. There are no claims of that.
Andrew Denton: Is there any evidence that you have seen of elderly people in Flanders being pressured or forced to consider euthanasia?
Mie Moerenhout: No, we don't have any signal that people are forced to make a choice for euthanasia, and it's only the person himself who can take the decision, not the family, not the professionals.
Andrew Denton: We are often told here in Australia that the elderly in Belgium are being made to feel vulnerable and under threat from these laws but you are saying that is not the case.
Mie Moerenhout: No, we have no signals of that there is no signals that there is a problem, that there are a burden for the - to the elderly people, the sick elderly who (INDISTINCT) end their life, no. They have no, no, no signals.
Andrew Denton: Do you think the euthanasia laws in Belgium have enough safeguards in them to protect the elderly of Flanders?
Mie Moerenhout: We think it sits in order especially for the elderly. It's a choice of the elderly and we know, yes, we know no problems.
Andrew Denton: No problems reported by representatives of the elderly in Belgium, either. But what about Oregon? Their laws have been operating for close to 20 years. Plenty of opportunity for elder abuse there.
Cherrie Broustein: My name is Cherrie Brounstein, and I am vice president currently of the board for Elders in Action. They help advise our mayor, our county and city governments, and the state legislature about laws that impact older adults.
Andrew Denton: Specifically on the question of vulnerability, does Elders in Action detect concerns that the Death with Dignity laws have encouraged older people to feel they are a burden on the community or on their families?
Cherrie Broustein: I don't think so, and it really does not impact either the medically fragile or people with disabilities or older adults, because it really impacts people that are terminally ill.
Andrew Denton: Has the death with dignity law contributed to a cultural change in Oregon in which older people think their lives are not as valued?
Cherrie Broustein: No. I do not think so at all. And one of the things that I have looked at and that had been a concern in Oregon before the death with dignity is the rate of suicides, and Oregon has a high rate of suicide for men over the age of 85, which has nothing to do with death with dignity. It preceded that and it has not changed
Andrew Denton: Opponents of such laws say that legalising assisted dying would lead to the elderly and the vulnerable feeling pressured into ending their lives early. Does Elders in Action have concerns or any knowledge that this is happening to elderly people in Oregon?
Cherrie Broustein: No, and we have an advocacy service that is free – and that has not been an issue. In fact I would say, as someone that's older, I would say in some ways there is a reassurance – that if you have an illness that is going to cause enormous suffering, that that suffering can be relieved in a way that is humane.
Andrew Denton: Interestingly, when Oregon’s citizens voted on the assisted dying laws at a referendum 20 years ago, Cherrie was opposed.
Cherrie Broustein: I voted against it at the time. I think because I had a number of these fears that were not based in fact or understanding of how the law would be administered. As I dealt with ageing people, I have seen how it actually provides a comfort both for the family of the people that are seriously ill, and many people that actually opt for the option of being able to end their lives with some sort of dignity never use it. They just want to have that there if the pain or suffering becomes unbearable.
Andrew Denton: So would say that since the introduction of the law, which you originally opposed, you have completely changed your view about how it works and the fact that there are enough safeguards in it to protect the elderly?
Cherrie Broustein: Yes.
Andrew Denton: Again, three peak groups, in three places where laws for assisted dying exist, saying that they cannot report any sign of abuse or coercion. Instead they report that the elderly are comforted – even empowered – by laws that are there to help them should they be in desperate need.
And yet the Most Reverend Fisher assures us that …
Anthony Fisher: Having classed the frail, the elderly, disabled as expendable the community is likely to do less for them and leave them feeling worthless.
Andrew Denton: It’s FUD. Fear. Uncertainty. Doubt. The deadly seeds of misinformation designed to poison the public debate about assisted dying.
And there is one particular seed of FUD that is more poisonous than the rest.
Tony Jones, Q&A: Thanks, Ana, for setting that out for us. Now, our next question comes from Luke Formosa.
Andrew Denton: Late in 2015 I was a panellist on the nationally broadcast Q+A program, discussing how we die, when a question came from the audience.
Question: Findings from the Netherlands euthanasia report in 2014 indicate 550 newborn babies with diseases or disabilities were killed. My question is how you propose Australian laws which protect the vulnerable when examples in Belgium and the Netherlands showing the exact opposite?
Tony Jones: Andrew.
Andrew Denton: I completely dispute and question your assertion that 550 babies have been killed. I don't know where you got that figure of 550 from...
Five hundred and fifty newborn babies euthanized in one year? Officially documented? If not true, this was a mighty seed of FUD sown in front of a viewing audience of a million people.
After the broadcast, a fact check of this claim was made by the independent academic website, The Conversation. They found that there was“no credible evidence to support the claim that 550 babies were killed last year under Dutch euthanasia laws. They went on to say: “ While this claim does appear on some websites, it is not backed by reliable official data.”.
There’s a link to it, and the episode of Q+A, on our website.
Luke Formosa, who made the claim, was forced to concede that he couldn’t provide an accurate figure but ventured that, “it is also impossible to know for sure how many cases have been unreported”.
When I checked to see what websites were carrying this claim, the most lurid of many was an American site called Lifenews.com – operated by right to life activists and promising real stories about real Catholics – with a headline that screamed “Doctors Euthanize 650 Babies Under Assisted Suicide Law in the Netherlands”.
And then, of course, there’s Australia’s most senior Catholic cleric, the Reverend Anthony Fisher.
Anthony Fisher: In Holland it was supposed to be for people in extreme suffering, consenting adults, but after 10 years of that experience it became legal to do it for babies.
Andrew Denton: What Fisher was referring to was the rather sinister-sounding Groningen Protocol, published in The Netherlands in 2005 but not as part of their Euthanasia law, which had been passed three years earlier.
Instead, it was developed, by Dutch paediatricians, to guide doctors in providing end of life treatment to severely ill babies with – quote - a 'hopeless prognosis who experience what parents and medical experts deemed unbearable suffering”.
The Groningen Protocol is often cited by opponents of assisted dying as proof of the slippery slope. After all, what could be worse than killing babies? Determined to understand it better, I sought out one its authors, Dr Eduard Verhagen from the University Medical Centre Groningen.
He told me about the suffering of a tiny number of newborns, born with a rare and excruciatingly painful skin disease, a disease impossible to treat.
Dr Eduard Verhagen: The only two cases that we've had were cases of children that had the disease that was called EB, Epidermolysis Bullosa, it is a skin disease that may be mild but it also may be extremely severe and those two babies had the extremist form of EB.
Andrew Denton: Can you describe to me what the symptoms of that are?
Dr Eduard Verhagen: Yeah, that disease is a disease where the skin is not attached well to the body, so where, wherever you would touch that skin it would come off and leave a kind of a burn wound or scar. It wouldn't heal and not only is the skin involved. Also the mucus membranes. For instance, of the gastro oesophagus, which makes swallowing and eating very difficult. The problem of this disease is twofold. One is that it is very, very painful and it cannot be cured, so we do not have possibilities medically speaking to improve the disease.
Secondly, because of all those wounds and problem of feeding the children well, they die early so most of them somewhere between the first and the second year of life. And it is in those babies that the parents may come up to the physician and say "OK, we know that you cannot cure the child, we know that there is pain that you cannot alleviate well. Could you please stop the suffering?" So those are the cases in the last few years that we've seen where the Groningen Protocol was used.
Andrew Denton: And, just so I'm entirely clear, all of the cases of babies who've been euthanised under the Groningen Protocol, They were terminal conditions. These babies not going to live beyond, what, a couple of years?
Dr Eduard Verhagen: Absolutely. So the criteria of the Groningen Protocol are clear, in the sense that the diagnosis and outcome must be hundred percent sure. There must be a disease that is, not treatable and incompatible with life. So all children are expected to die in the near future. Generally we would say somewhere between a few days, weeks or months rarely years. The second criteria that is extremely important is the unbearable and untreatable, hopeless suffering.
And, in the cases that I have just talked about, the EB cases, I don't think there would be any person in the world that would, say that those babies aren't suffering. So, it is only when we're all convinced, parents as well as healthcare providers and other experts, that there is extreme suffering, that would make a patient a candidate for neonatal euthanasia.
Andrew Denton: I think the key there is when you say the parents, because the last people in the world that wish to see a newborn die are the parents of that newborn.
Dr Eduard Verhagen: Absolutely. Neonatal euthanasia in Holland can never be performed if the parents are not fully consenting, asking for this procedure. So basically what we do is we offer a possibility for parents in the context of unbearable and hopeless suffering. They may want to choose this option but they also may choose not to have neonatal euthanasia. And this is I think very important and totally in line with how end of life care is organised in our country. It is sad, it is terrible, but knowing that your baby will die, we would say, please allow parents a say in how they would die.
Andrew Denton: Eduard, you must be aware of how this is sometimes portrayed in other parts of the world. I've heard it described here in a sinister way, as you're killing babies. As though there are some less compassionate motive. How does that make you feel?
Dr Eduard Verhagen: I think what bothers me most is that the facts that are given about Groningen Protocol hardly ever are correct, so the nuances, the details of it, and the huge weight that is given to the assessment of the parents as well as the assessment of the physicians and the rarity, the fact that it is only used for extreme situations is not always acknowledged. So the fear of the slippery slope, I think, we've demonstrated is totally needless,
Andrew Denton: Due largely to the introduction of prenatal screening, the latest data shows that since 2007 there have been only two reports of babies being helped to die by doctors using the Groningen Protocol.
Not 550 babies; 2. Both of them faced with a life full of pain that might, at best, have lasted a couple of years.
It is these rare and tragic cases that the Protocol was written to address. An honest, cautious, and humane response from doctors to an awful medical problem faced by every society, including ours.
But if you’re Archbishop Fisher? Much easier just to say “Look! Now they’re killing babies!”
Fear. Uncertainty. Doubt. FUD. It’s been said that, "A paranoid is someone who knows a little of what’s going on".
So when somebody like Archbishop Fisher says …
Anthony Fisher: Finally, who dies in a euthanasia culture? The weak, the frail, elderly, the sick, the handicapped, the depressed, babies.
Andrew Denton: ..what he’s really doing is hoping to make you feel a little more paranoid about assisted dying.
In deliberately creating the impression that "the elderly, the disabled, babies and the frail" will be "singled out" and "made vulnerable" under these laws – a suggestion, unsupported by facts, and clearly refuted by the disabled and the elderly who live in these countries – Archbishop Fisher, and others who claim to have the welfare of the vulnerable at heart, are only serving to increase their sense of vulnerability instead.
Now you know what those poisonous seeds of FUD look like, next time you encounter one, do your best to weed it out.
[SONG ‘FORTY EIGHT ANGELS’ BY PAUL KELLY]
Andrew Denton: If you’d like to know more, or hear the full debate between Archbishop Fisher and Peter Singer, head to the episode page at wheelercentre.com/slash better off dead.
Next episode, we’re going to look more closely at the vulnerable elderly in Australia and shine a light on our country’s dark little secret. Why is it that, in the absence of a law for assisted dying, such a disturbing number of our elderly are choosing to kill themselves in lonely and violent ways? And why have some of Australia’s coroners chosen, for the first time, to speak out publicly about it?
Episode 14 – Australia’s Dark Little Secret
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is
Annette Upton: Well if Mum had a broken back or neck, was a paraplegic, I would use a
pillow and try and stop her breathing totally.
Joan Upton: Yes, well, but I am told that I would struggle manfully to not be - apparently
that's the reaction. They all struggle if you're cutting off their air, so you'd have to be at all
your best strength and have a good hearty breakfast first.
Andrew Denton: This is Joan Upton – She’s 90 – advising daughter Annette to have a big
brekkie before attempting to cut off her mother’s oxygen supply.
It’s known as rational suicide. Some deny that such a thing exists. But amongst older
Australians it’s happening at a disturbingly high rate.
Why are our elderly killing themselves in often violent ways? Perhaps it’s time we talked
about Australia’s dark little secret.
Andrew Denton: My name’s Andrew Denton and you’re listening to Better Off Dead.
Joan Upton lives on the north coast of NSW on the family farm at Walcha, which she still
helps run in partnership with her son.
She has no history of mental illness, neither is she depressed.
Joan Upton: I feel really alive. This is the trouble. I mean mentally I'm interested in
everything. I like to hear the news. My head feels good, but my body - my bones are very
fragile. I've got to be very careful how I move around.
Andrew Denton: Despite being confined to a wheelchair by a genetic disorder that has
weakened her bones, Joan is strongly independent.
Joan Upton: I can go to the toilet myself. I can get a meal if I want to. I've got a carer
because I've got enough finance to stay at home.
Andrew Denton: It is Joan’s fragile bones that are the source of her fear.
Joan Upton: I'm frightened I'll go over backwards and break my back or my neck and be left
lying there for two or three years. That's why I want to have some way out.
Andrew Denton: Like many Australians, Joan’s fears about what might happen at the end of
her life are fuelled by what she witnessed when she was younger.
Joan Upton: My own mother lived for eight years as a complete vegetable. She was a highly
intelligent woman. We didn't even know the word “Alzheimer's”.
She had no idea who I was. And then you see them lying there and they're just getting thinner
and thinner and their little wrists are like a little bird's.
It's just atrocious.
In the end she got pneumonia and died after eight years. It was everything she wouldn't have
Andrew Denton: If you could have found a way to release your mother from that, would you
Joan Upton: I would have helped her to end her life.
Andrew Denton: Scarred by her mother’s lingering death, Joan joined the voluntary
euthanasia movement in 1973.
Joan Upton: W e did have big one meeting in Tamworth, and it was completely and utterly
stacked by the Catholic Church. Every nun and priest was there! The only person who spoke
in favour of the medical world was a local doctor, and he said that he had a patient who'd
walked into the water with stones in his pockets and he would have much preferred to be able
to help him die. But that was about all the support - the meeting was badly outvoted by the
whole Catholic Church there.
Andrew Denton: Have you seen many of your friends who would have liked to have a role
where they could make choice about how they die?
Joan Upton: I think they all would - all of them. I don't know any of them who wouldn't like
to have a law that would allow a doctor to end your life when you feel you have had enough
and you're too frail to be able to enjoy any of the things you did.
Andrew Denton: How to take her own life is something Joan has thought about carefully for
Joan Upton: If I've become incapacitated and there's no pleasure in the things that I'm left to
do, I would like to be able to die in a peaceful way. I don't want to have to put myself through
Andrew Denton: Have you spoken to your local doctor about this?
Joan Upton: I haven't said to him I would willingly commit suicide if it was the right way,
but he knows I don't want to be kept hanging on, but I don't think he'd be any use.
Andrew Denton: So you can't really have the conversation with him.
Joan Upton: No, I can't. Not really.
Andrew Denton: That word “suicide”. You know that those who oppose any kind of assisted
dying or euthanasia, they use that word very strongly – as in: “Suicide is morally wrong”.
How do you see it?
Joan Upton: I think that the person to make that decision is the person who owns the life,
and if they want to end their life, I think they've got the right to do it and that's it, and I don't
want anyone's opinion except mine.
Andrew Denton: There would be people who would hear you say that and say, “Well you're
just depressed,” or “There are things we can do to make you value your life more”.
Joan Upton: Well I'm not given to depression. I was born with a very even temperament.
Andrew Denton: So it is that Joan has gone about – rationally – planning her own exit.
Joan Upton: For a while there I had some tablets and in actual fact I do have a cylinder of
nitrogen, but I would want somebody to oversee it when I used it, and that's putting
somebody at risk.
Andrew Denton: If you can't do it, who would help you?
Joan Upton: Well that's something I can't say.
Andrew Denton: OK, but you have discussed it with...
Joan Upton: Yes, yes. It's been discussed.
Andrew Denton: And are there people willing to help you?
Joan Upton: There are people who are willing if you pay them.
Andrew Denton: So this is not your family?
Joan Upton: No, no it's not. But there are people around who will. But I would much prefer
just to plain die.
Andrew Denton: How much harder is it for you that you have to be secretive about this?
Joan Upton: Well I'm not secretive about euthanasia.
Andrew Denton: But secretive about what you may ultimately choose to do?
Joan Upton: Oh, well the chap that I got the nitrogen from said, “You don't ever want the
ambulance to come. They want all sorts of paperwork,” and he gives you about six things to
be careful to do so that you're just dead and there's not a lot of questions asked.
Andrew Denton: Joan has even explored going to Mexico to source the illegal drug
Joan Upton: I'd have to say I don't really want to go to Mexico and die there. Because it's a
hell of a nuisance getting bodies back and all that sort of thing. So I would say I'd rather the
Nembutal came to me.
Andrew Denton: You've got three children. Have you discussed with them your wishes?
Joan Upton: All the time. They all know exactly what I think and they're quite happy about
it. They would help me in any way.
Andrew Denton: Joan’s daughter, Annette, has been listening in. If asked, she has every
intention of helping her mum to die.
Annette: I just think if that's the way Mum wants things to go, that's exactly what I would do.
I have got my secret little posse hole in my apartment where I have got all the information,
and I have got names and numbers of various people that may or may not be able to help at
I know exactly where to go to when I need it if Mum wants me to accompany her.
Andrew Denton: Would it be better if there was a law whereby this could be done openly
and you could be together if that's what everyone chose?
Annette: Oh totally, totally! I think the way the laws are structured at the moment are
appalling. I mean to see some of these people that are in so much pain, they have not got any
quality of life.
I don't know why we can't have clinics, you know, specialised clinics. Then it would be legal,
it would be done properly, people don't have to go around behind everybody else's back.
Andrew Denton: The conversation Joan and Annette are having is far from unique in
Australia and it raises an uncomfortable question: Should an older person who may not have
a terminal illness but who has other conditions that make life unbearable be given the option
of assisted dying?
Marshall Perron: To me, if there was ever a time in your life when your wishes should be
paramount, over everyone else's wishes, it's on your deathbed. Simple as that – not the doctor,
the church, your wife, kids; nobody else should be able to overrule you on your deathbed, if
you are a competent adult, and so that's the path I legislated for and it was successful.
Andrew Denton: Marshall Perron is the former Chief Minister of the Northern Territory and
architect of the first law anywhere in the world to legalise assisted dying.
Marshall Perron: I'd been in politics for 20 years. Most of the actions of government, in my
view, are really administration, and I just began to feel that as a legislator you ought to be
really making a difference socially.
I remember getting to a paper by Dr Helga Kuhse from Melbourne – Monash University –
and her paper stating the case for voluntary euthanasia was so profound. I remember ending
the paper and saying to my wife, who was alongside me, I said “I'm going to do something
about this. I can win this argument”.
Andrew Denton: What was in that document that you found to be so profound?
Marshall Perron: Just the sheer logic of it.
That a competent adult's decision about themselves, providing they were not adversely
affecting anyone else, was really a fundamental right that we all have, and that's absolutely
true. What we don't have is a right to access what I call the keys to the medicine cabinet,
which is what the entire voluntary euthanasia debate is about – not whether or not you're
allowed to kill yourself; it's whether you can access the means to do so in a peaceful and
Andrew Denton: In 1995 Marshall put forward a law that would help the terminally ill to
Marshall Perron: What I was proposing was if there are terminally ill patients who wish to
end their suffering by accelerating inevitable death, and there are sympathetic doctors who
are willing to help them die with dignity, then the law should not forbid it. It was that simple
and I've always seen this issue clear as a bell. It's about the rights of an individual, a
Andrew Denton: Marshall Perron’s law existed for two years before the Federal government
controversially overturned it. But he’s kept close to the issue, collecting stories from around
Australia of people who a law like his would have helped.
Marshall Perron: I had an example in Queensland, of a fellow who sent his wife down to
the shops to get her out of the house. She comes back and finds him with his feet sticking out
of the swimming pool. He had tied a weight around his neck - he was an elderly man - and
dropped into the swimming pool. So he sent her out of the house so that she wouldn't be
implicated in any way. There's no goodbyes. She spends the rest of her life remembering the
last vision of her husband was his feet sticking out of the swimming pool.
I just think that politicians are blissfully unaware of what's happening in the suburbs of
Australia. Because all you see in the paper is “Died peacefully in his sleep” or some such
words in the death notice. All he will be is a statistic in two years' time when the ABS publish
suicide statistics. Instead of 2300, it will be 2301. That's all we will know about this great
man who felt compelled to take his own life violently because he couldn't talk about it to his
doctor and get some assistance to die peacefully in the arms of his family.
Andrew Denton: Marshall knows all too well why elderly Australians are taking such
Marshall Perron: Even people with lots of friends and family – from my own experience
and talking to some very elderly people, including one recently of 95 – a 95 year old woman,
life has simply lost any real meaningful pleasure – immobility, pain on and off, which can be
controlled with massive doses of opiates which put you in a bit of a stupor and generally give
you a disinterest in world affairs. And even people with close family – and this woman did
have in fact close family living in – just felt that she'd run her course, and I'm sure that's not
unusual. And she was seeking a way to die peacefully and calmly with her family around, the
one thing that she is denied.
Actually she's denied more than that. In this case, this woman would find it very difficult to
take her own life otherwise. She wouldn't be able to move fast enough to jump in front of a
car for example. Gruesome as all this sounds, people are doing this and they're doing it
regularly because they feel they don't have another option.
And I'm thinking, you know, what are our politicians doing about protecting our interests in
these cases? They just don't want to talk about it, and these things are happening in our
suburbs, down the street.
Andrew Denton: In an effort to bring this to the public’s attention Marshall tried something
left of field.
Marshall Perron: So I wrote to the Coroners to say this is happening regularly in Australia.
We don't know how regularly; you do These tragic stories need to be told so that our
legislators who are supposedly there to make society a better place, to monitor what's
happening and make changes where necessary – I mean I still am a little bit staggered that
politicians haven't really examined this issue fairly closely on behalf of their constituents and
taken some action.
Andrew Denton: Out of six state and two territory coroners, one wrote back.
Mark Johns: Well I agree that it is important to shine a light on the elderly taking their own
Andrew Denton: Mark Johns is the state coroner of South Australia.
You responded to a request from Marshall Perron for information. What is it that you are
Mark Johns: Well it is certainly not uncommon to have octogenarians and nonagenarians
taking their own lives. That doesn't usually fit with the lovely old lady or the nice old
gentleman that you see, who has lived a full life and clearly isn't clinically depressed, and
clearly is rational and lucid but makes this decision to end their lives.
And I think that it is the elderly engaging in this practice that the public doesn't get to hear
Andrew Denton: Can you give me a sense of the prevalence in South Australia, and if it's a
trend that is increasing?
Mark Johns: Every single reportable death in this state, and that includes all self-harm
deaths, go over my desk or that of my deputy, so we have a very good awareness of the
prevalence of suicide. And it is quite a common thing that would be in the order of maybe
half a dozen such deaths in a given year.
Andrew Denton: For Mark Johns, each of these deaths represents a human tragedy.
Mark Johns: I have seen a hanging in a 92-year-old in what appeared to me to be a situation
of desperation driven by what must have seemed a very hopeless situation, with a wife who
had been in a terrible situation of dementia, and they were attempting to live together at
home, and I think she had been quite violent and was removed from the situation, and very
shortly after that this 92-year-old gentleman did in fact hang himself.
Andrew Denton: You have observed that many of these deaths happen in isolation. Why is
Mark Johns: Many of them are planned and quite clearly thought out, and the person then
makes in advance a decision that they are going to do it but they know that they have to do it
by themselves because of the criminal laws around this issue. And so it is not possible for a
person who is engaging in that exercise to have some near relative with them to comfort
them, or if they do, they are putting that near relative at risk of prosecution.
Andrew Denton: It doesn't seem right that somebody who has led a full life, who has
contributed fully to this society, should have to die such a lonely death.
Mark Johns: Well I agree with you. It really greatly troubles me, and it is a very sad lonely
isolated event in a life otherwise perhaps well lived.
Andrew Denton: I know it is not your role to advocate for any particular law, but would you
like to see the kind of information you have put on the public record lead to a more open
discussion about subjects like voluntary assisted suicide and euthanasia?
Mark Johns: Well, yes. And that is why I am talking to you.
Andrew Denton: And what do you think the chances are of that conversation happening?
Mark Johns: I’m not optimistic.
Andrew Denton: Why is that?
Mark Johns: I think it is in the too hard basket, it is a difficult area, and unfortunately the
difficult areas are the ones that are left unaddressed too often in Australia these days.
Andrew Denton: I asked Mark if he thought what was happening in South Australia might
be repeated in other states.
Mark Johns: This is not an uncommon phenomenon by any means, and I would be amazed
if the situation was any different in other jurisdictions.
Andrew Denton: Mark Johns is right – a fact confirmed brutally in late 2015 by Victorian
Coroner John Olle.
Appearing before a parliamentary inquiry into end-of-life choices, he wanted to bring to light
a very particular group of people: older Victorians with no history of mental illness and with
loving family relationships, who, in his words, were taking their own lives in “desperate and
According to the Coroner, what these people had in common was that each was suffering an
“irreversible decline”, either from a terminal disease, multiple, chronic illnesses, or
permanent physical pain. He stressed that these were people of rational mind.
While giving evidence, Coroner Olle had to pause three times to collect himself, so
distressing were the stories he told. As you listen to them now your instinct may be to turn
away but I would ask you not to: As a nation, we have been turning away from this dark
secret for too long.
First, he spoke of the 82-year-old woman, with a close and loving relationship with her kids,
suffering from multiple illnesses and no longer able to do the thing she loved most, which
was to read books. She bled to death in her lounge room, after slashing her wrist with a knife
Then there was the 89-year-old man, married for 61 years and with a long and loving family
relationship. No history of mental illness, but his lucidity, memory and eyesight were failing.
Unable to listen to music, watch TV or read, he died alone after grinding up pills and taking
Next, was the 75-year-old man, who had close, loving relationships with his daughters, also
with no history of mental illness. Diagnosed with prostate cancer, which had not responded
well to treatment, he clearly expressed that life would be so much better if somebody could
help him die. He shot himself in the chest. His body was found by his family.
Finally, a 90-year-old man, also with a close and loving family, no history of mental illness
but many debilitating conditions, including chronic pulmonary disease. Shortly before his
death he was diagnosed with brain cancer. Depressed and angry he told his family that he
would rather end it straight away. He took his life with a nail gun.
Olle spoke of other cases before him: the lovely lady who stepped off the platform and in
front of a train, a man who tied a hessian bag full of sand around his waist and walked off a
Opponents of assisted dying like to assert that people like these “don’t value their own
lives”– implying that if others could just help them find that value, they would never consider
ending them. Others argue that, with more resources for palliative care, their needs in their
dying days could be met.
But on these, Coroner Olle was clear.
He said that his office saw no way of preventing these deaths, nor, in his estimation, were
they people likely to qualify for palliative care. He went on to say:
“To my knowledge the people we are talking about have made an absolute clear decision.
They are determined. The only assistance that could be offered is to meet their wishes, not to
prolong their life.”
John Olle spoke of his motivation for bringing this to public attention. Would
he want a member of his own family to die under the circumstances of loneliness, fear and
horror of some of the cases he was privy to? The answer was a resounding no. He went on to
“What seems to be a common thread through the family is this absolute sense of respect for
someone they love [and] this absolute sense of helplessness. They know this person is
screaming for help, but no-one is going to answer the call, not in this society. So they have to
He estimated the number of elderly Victorians dying in this way at close to one a week.
After hearing from Coroners Johns and Olle I approached the National Coronial Information
Service to see if they could give me a sense of the national picture. Their estimate: that two
people over the age of 80 are taking their lives in Australia every week.
The most common method? Hanging.
It’s been almost 20 years since Marshall Perron’s law helping the terminally ill to die was
snuffed out by Australia’s Federal Government. Since then, none of the 27 attempts in
different states to pass a new law have succeeded. In fact, only one has got to 2nd reading –
which means it’s never even been seriously discussed, much less a workable law considered.
Faced with no legal options – and no prospect of change – many older Australians have
turned for help to this man.
Philip Nitschke [YouTube video]: This is the point: I don’t want you going home tonight
and killing yourself [Laughter]. Or if you do, don’t link it with this show by leaving some
stupid note saying “Oohhh, I got home and he made it seem so appealing I couldn’t help
[LAUGHTER AND MUSIC]
Andrew Denton: Philip Nitschke – the Australian doctor who, under Perron’s law, became
the first in the world to legally assist someone to die – appeared at the 2015 Edinburgh
Comedy Festival, performing his show Dicing with Dr Death.
Philip Nitschke : We've got 25 shows and it's quite stressful, I suppose. As they say, you
know, dying's easy, comedy's hard. I'm finding it hard going, but it is - it's a steep learning
Andrew Denton: How are you getting the comedy out of euthanasia?
Philip Nitschke : Well, look, I'll tell you the younger audiences are really intrigued about the
lengths that people will go to, to try and get access to the best end-of-life drug, which is
Nembutal, and, ah, so when I tell them the story about how some people have gone to the
trouble of having affairs with vets, so that they can get the vets to help them get this drug –
the line I usually use in the show is “That's one strategy you might use”. And I say, “I see
half of you out in the audience are saying, ‘Look, I really want this drug but I draw the line at
that, I'm not going to fuck a vet just to get the drug'”. That always gets a good laugh.
Andrew Denton: And why do you reckon that makes good theatre?
Philip Nitschke : Look it's two things. I mean, everyone is intrigued by the topic, and I mean
I have a section in the middle of the show where I get quite reflective and I say to people,
“Look, what, people ask me all the time – ‘What's it like going around to someone's house
knowing that when you leave in an hour's time the person will be dead?’ And I, and I reflect
on that, and I say, “You can't but help feel like something of an executioner”. The audience
is, ah, it's dead quiet. You could hear a pin drop. And I think what I'm, hoping to achieve here
is to try and get, in predominantly a younger group, to just put their feet into the shoes of
someone who's going through that difficult time and reflect a bit on your own mortality.
Andrew Denton: Nitschke is the founding director of Exit International - an online
euthanasia advocacy group founded in 1997, which claims a membership of over 3000
Australians, average age 75. On their website, they say:
“Exit sets itself apart from other aid-in-dying organisations in that we take a non-medical
approach to a person’s right to determine the time and manner of their passing.’
This reflects Nitschke’s own journey over the last 20 years, one that has taken him far from
his original position of a law with safeguards and medical oversight.
This is from your book Damned if I Do: “I believe that every rational adult should have
access to a reliable, peaceful and lethal pill that one keeps at home”. Is that still your
Philip Nitschke : Yeah, very much so. I used to believe that a terminally ill person should be
able to get lawful help from a doctor to die. Now because I keep meeting people who come
along with good reasons as I can see it, to die, which were non-medical, I thought the only
consistent philosophical position is where you accept the fact that this must be seen as
effectively as a human right.
Andrew Denton: Would you still like to see this pill, as you once said, being available in the
Philip Nitschke : I think that a more measured response would be that it should be much
more readily available. Now, the question is: When do you give this drug to people? And
there's a feeling that you should have some life experience before you make the decision to
get rid of your life, and so, we sort of effectively ended up with saying, well, everybody over
the age of 50. But it's a little bit arbitrary.
Andrew Denton: How do people access it?
Philip Nitschke : Well, there's been a suggestion you should effectively be able to go and
apply and get your, ah, and get your drug, like the state-sanctioned issuing of the drug to
people over 50. We're going to see more of this being discussed as we move more away from
just an option for the terminally ill to a much broader option.
Andrew Denton: Does anyone qualify for any reason who is above the age of consent?
Philip Nitschke : Yes, there's two criteria. You can't be a child, and so the issue of age comes
in, obviously. But the other issue is that you must be of sound mind, and that opens up a
whole Pandora's Box – well, what the hell does that mean? But generally, you must be a
person who has capacity to make decisions in what you perceive is your best interest.
Andrew Denton: Who determines the sound mind?
Philip Nitschke : We do it now. I mean if you go out in the street and start looking like you're
acting in a dangerous way to yourself or others, you will rapidly have that decision made for
Andrew Denton: Sure, but if you're, if you're....
Philip Nitschke : If you make a mistake...
Andrew Denton: If you're applying for a peaceful pill, you're not necessarily acting in an
aberrant way but it may not mean you're of sound mind, so who determines that?
Philip Nitschke : Well, it may though. I mean, what I'm suggesting here is that if you're not
of sound mind, it will have been noticed. Now, you're saying that, well, someone might slip
in under the radar screen here, and I guess that's true, but it's not a reason why the idea should
be thrown out as irresponsible. The idea of giving people this option, I think, leads us towards
a more responsible society where people are encouraged to take responsibility for all manner
of their decisions, including the most important of all decisions – do you want to live or die?
Andrew Denton: Don't people sometimes, sometimes often, shift in and out of rationality,
not just to themselves but towards others? What's to stop somebody at 50 who may have had
a bit of a breakup or lost their job taking their own life when if they'd lived another 20 years,
they might have lived to see a second marriage, and another fulfilling career?
Philip Nitschke : But isn't it the same argument as saying, well, why don't we just say that noone
can have this option because their situation might change? What about the terminally ill,
they might have a cure tomorrow...
Andrew Denton: I think that...
Philip Nitschke : for your cancer? And, sorry?
Andrew Denton: Is that, but there's a significant difference between somebody with terminal
cancer and somebody that's going through a bad period in their life. I guess the point I'm
making is that isn't it a communal and social and human thing to do, to want to try and help
people through a bad period – particularly one which may in all likelihood be only transitory
– rather than give them an easy way to end their own life? Which is going to cause certainly...
Philip Nitschke : Yeah, look, I don't...
Andrew Denton: ...certainly distress to those around them.
Philip Nitschke : I'm not suggesting... Yeah, look I'm not suggesting that one abandons those
strategies that you've suggested. Of course we should be applying those compassionate
measures that a humane society would, and of course we should be helping people through
this difficult time. What I'm saying, though, is that if we do all of that, and that person
persists with this idea, then again it needs to be acknowledged and respected.
Now, ah, you're saying well if they had a pill in the cupboard, hell, as soon as things got bad
they'd just be going straight to the cupboard and taking that pill, and there'd be a pile of
bodies mounting up if we were to adopt some of the suggestions that you've made. But I, I
don't quite see it that way, because what I see, and I see it a lot, is that people who get access
to this drug – and of course it's pretty widely available now thanks to the internet – find
themselves immediately empowered by it. And because they're empowered, they feel happier
and better. Now, you're saying, well, some people will take it prematurely and die and that
will actually shorten their life.
Clearly. But I see more often than that, their feelings are lifted by access to this drug,
knowing it's there safely stored, that they are prepared to withstand many of the slings and
arrows of life, and go on to live longer lives.
Andrew Denton: Nitschke’s shift from medically-controlled safeguards to a lethal pill being
available for people over 50 began almost 12 years ago when he was confronted by a woman
called Lisette Nigot.
Philip Nitschke : She was the French academic who came to one of my workshops, came up
after and she said to me, “I'm going to die in four years time”. And I said, “Why, what sort of
disease is this?” thinking she had a very clear-cut trajectory and she said, “Oh, I'm not sick,”
“but I'll be 80 then, and 80’s the time to do”. And I thought, “Mmmm, I don't believe this”. I
thought this is just a story people say.
But every year I went back to Perth to run a workshop, she was there and it was four years,
three years, two years, and then I started to realise that she was serious. And about a year out,
I said, “For goodness sake, you're not even sick, Lisette, why don't you go on a world
cruise?” And she just looked at me, really cool, and she said, “Why don't you just mind your
own business?” She said, “What I want from you, Doctor, is technical information. If you're
going to come along and give it to me with a sermon, forget it. I want information, and you've
got it, and what gives you the right to have it, and what denies me access to it?”
And I mean, I was seriously challenged by that, because this idea that I could run around the
world or the country dispensing my information about the drugs and how to get them to the
privileged few who satisfied my criteria, there's no ethical basis to that, and what gives me
the position to judge other people's reasons? And she said that – “Don't come around here and
impose your template on what is a life worth living on me. I make that decision, not you”.
And anyway, I was so challenged and rattled and shaken by the whole experience, that I of
course fell apart and gave her all the information and when she was 80 she died.
And so nowadays I'll accept anything. I mean if people come along and say, “Look, I've
thought it through, and I want to die for the following reasons...” And we've seen a range of
them – like, “I'm going to prison for 30 years and I want to die,” or ah, “My husband is dying
and I've been with him, been with him for 40 years, and I want to die with him. I'm not sick
but I don't want to live on”. Now, you can't just run around and rule all these people
ineligible, but they would never satisfy any of the, ah, any of the criteria of legislative models
Andrew Denton: What’s been noticeable about Philip’s trajectory over the last 20 years is
his increasing disaffection with his own profession.
Why are you as a doctor so at odds now with a legal framework that enables the patient and
more than one doctor to have a series of careful discussions before a request for assistance to
die is granted?
Philip Nitschke : I think the idea of sitting down and discussing this with a panel of doctors
effectively disenfranchises the individual, I mean the medical profession has got a long track
record on this issue of being unable to cope with it. As a profession, I find them rather
disappointing, and I don't think they've got anything particularly profound to say on the issue
of death and dying. Death and dying is a natural phenomenon and in many ways we're all
experts, and I would not be handing the control of that process over to a profession with such
an abysmal track record.
Andrew Denton: You know the scenario often put up, though, that the elderly, ah, parent,
could be pressured by their family to end their life, for many reasons. It could be financial, it
could be personal. Are these people not worth making an extra effort to protect? Isn't that a
legitimate social concern?
Philip Nitschke : Well it is, but that's the same argument about why right now the people that
are being pressured to live should have their wishes respected and the tyrannical children
should be called aside. This idea that you've got, you're sitting – some poor, vulnerable,
dying, elderly person is being pressured to take another round of chemotherapy they don't
want – that should be stopped. And they should be encouraged to say, “No, I don't want the
chemotherapy, I want a peaceful death and that, and the palliative care facility should now be
brought into swing to allow me to die peacefully, not pressure me to try some new and exotic
Andrew Denton: Going back to what you said about doctors not being the experts on death,
A lot of death involves medicalisation, whether we like it or not. So, do they not have a
significant role to play at the end of life?
Philip Nitschke : Look, I think, yeah, they have a significant role to play, but there's a sort of
an acceptance that they are the arbiters. In some ways people almost feel you've got to have
someone with a white coat to give you permission to die.
Andrew Denton: There are many doctors who are highly skilled, very compassionate, have
longstanding relationships with their patients, sometimes with their patients' families, and
there are many people who find the process of dying extremely scary and who wish to have a
doctor there. Do you acknowledge that?
Philip Nitschke : Yeah, of course, and, of course, everything you say about that's true. I
mean, when I start talking about the profession there are so many, ah, examples where that's
not the case, and I'm certainly not trying to in some ways paint every doctor in that way, but
the profession as a whole I think has got a poor track record.
Andrew Denton: The antagonism between Nitschke and the medical profession goes both
In 2015, the Australian Medical Board, which had tried to de-register Nitschke previously,
invoked its emergency powers to suspend his medical registration.
The action was triggered by the suicide of 45-year-old Perth man, Nigel Brayley, who had
approached Nitschke at an Exit workshop, and later in emails, saying he wanted to die. When
asked why he hadn’t referred Brayley to a psychiatrist, Nitschke said Brayley had not seemed
depressed, and had made a rational decision to die, which he had no right to stand in the way
of. He said he did not know at the time of his correspondence with Brayley that he was a
suspect in the death of his former wife and the disappearance of a former girlfriend.
The Medical Board of Australia argued that, even though Brayley was not his patient,
Nitschke had an obligation to refer him to a psychiatrist.
Nitschke stood his ground, saying he believed the prospect of going to jail was behind
Brayley’s decision to die, supporting his argument that Brayley had made a rational and
Darwin’s Supreme Court agreed with Nitschke that he was not obliged to refer Brayley to a
psychiatrist because he was not his treating doctor and overturned the suspension of his
But the Medical Board persisted with a further 12 charges against Nitschke. They issued him
with an ultimatum: Stop endorsing or encouraging the suicide of any member of the public or
give up his license to practise.
In an act of public defiance Nitschke, 68, burned his medical registration and ended his
Nitschke’s willingness to, as he puts it, “accept anything” has, not for the first time, put him
offside with others who support the cause of assisted dying.
Dying with Dignity Victoria, one of the peak groups fighting for voluntary assisted dying in
Australia, make a point on their website of saying they have no affiliation with Nitschke.
Marshall Perron is also torn about Nitschke’s role.
Philip Nitschke, do you think overall he's been a positive or a negative to the conversation in
Marshall Perron: That's the hardest question, Andrew, to answer. There are times when I
have cursed him, along with the rest of the movement. As to some of the things that he's
done, I'm not sure. Philip is a hero to a huge number of Australians, and they would turn to
him in their hour of need – and not a lot of politicians can say that. However, he has damaged
the cause at times severely, and so he's been a mixed blessing I guess.
Andrew Denton: Whatever Perron’s reservations, he understands that, as long as attempts to
create a new law in Australia are blocked, Nitschke’s will remain a powerful voice in the
debate about assisted dying.
Marshall Perron: There's a whole movement in Australia of attempts to find alternate ways
to take your own life than the violent ones, and that movement will grow as long as the
blockage remains, and what our opponents I don't think understand is if the search is
successful one day for the legendary peaceful pill – the means to take your own life that
governments can't stop – there will be no need for legislation.
Andrew Denton: Philip Nitschke agrees.
Philip Nitschke: By opposing the introduction of legislative moves, what in some ways
they've done is that they've driven the technological developments which ultimately are going
to make their moves, I think, a failure.
Andrew Denton: He sees that the increasing availability of Nembutal has, for many, already
made the need for an assisted dying law obsolete.
Philip Nitschke: There's more of this drug available now than there's ever been, and it's
because of the way we're having the debate now that's brought on, if you like, this flood of
Nembutal coming to the country. You don't need any help to have a perfectly easy and
straightforward death; you've just got to make sure you're in position to take that step.
You've simply got to go out and get the drug and then you can die peacefully whenever you
like, and it won't matter whether the laws change or not.
Andrew Denton: Philip makes it sound easy and, perhaps for people who are healthy and
unfazed by the possibility of prosecution, it is. But I think of the people I’ve met who are
desperately ill, or desperately scared, and for whom the thought of breaking the law in search
of a peaceful death is more than they can handle.
Currently, people if they want to get Nembutal, have to act outside the law. There is a certain
amount of fear and chance involved with that. It's not necessarily an easy thing to do. So
wouldn't a legal framework make this whole situation from the patient's point of view, the
person who's suffering, wouldn't it make it a lot better and a lot less anxious for them?
Philip Nitschke: I'm not opposing the idea of legislative change. I'm saying of course we
should bring in laws. I'm simply saying that it won't be enough in the long run.
Andrew Denton: Even if a law were to pass, says Philip, it would be too limited.
Philip Nitschke: To be eligible to any of the currently-existing pieces of legislation that are
around the world or about to be passed, perhaps one day in Australia, you're going to have to
be just about dead to qualify. And you're going to have to go and submit yourself to
interrogation by a panel of doctors to determine that you make the cut. Now, what I'm
suggesting is that as more and more people coming along and describing their situations to
me which aren't even medical and wanting to die, they would never make the cut, so
legislation is becoming increasingly narrow and it's only going to apply to very, very few
people, and I think the issue's much broader than that, especially if we start to describe it in
terms of being a human right, and people who do have these non-medical reasons for wanting
to die, which should be respected, shouldn't be having these obstacles placed in their way.
Andrew Denton: What do you think is the likelihood that politicians and the medical
profession in Australia will embrace ideas like the peaceful pill, available for, well, an
indeterminate range of people?
Philip Nitschke: We can't even, in Australia in the last 20 years, pass laws that would allow
a person who was just about to drop dead to speed it up by 5 minutes. So it's going to be very,
Andrew Denton: There is a terrible irony about Philip Nitschke. The man who has helped so
many older Australians take control over how they die feels powerless to help the person he
would most like to – his mum, Gwen.
Finally, Philip, your own mum, she's still alive, yeah?
Philip Nitschke: Yeah, she's 96 in a nursing home in Adelaide, and every time I see her she
always says the same thing: “How long is this nightmare going to go on for?” And she says,
“Most of my friends are gone and I just want to die. Why isn't it happening?” She's one of
these people who just lives on, unhappy.
Now, I've said to her, “Look, if you had the drugs, when would you take them?” And she
says, “Yesterday”, and she says, “Why don't you get me the drugs?” and I'm sitting here
feeling somewhat pathetic really, because my belief is that she should have access to those
drugs and she should be able to take them, and I think it would be a very joyous occasion for
her, and she says, “It's too dangerous for you, for you to do this,” and I think she's probably
right; it would be a dangerous course to go down, but heavens, she just keeps living on in
what seems to be this twilight existence of suspension and she hates it.
Andrew Denton: I'm curious why it is that you, of all people, haven't been able to help her?
Philip Nitschke: Yeah, because I'm a cowardly person, Andrew, because I should be in there
giving her the drugs. Look, I've been trying to work out some smart way of doing this. I know
full well that the minute she dies there will be autopsy on her, and the minute that that
happens and the, shall we say, Nembutal is found – I've already had my place raided and torn
apart by the police on three occasions, I've already been interrogated quite often by the police
and had all my computers and mobile phones confiscated, so it's a bad time and I don't want
to go there. And being in prison doesn't help anyone. So if you've got any ideas, I'll be glad to
hear them and if anyone is out there and wants to help Gwen Nitschke, in the nursing home in
Salisbury, please go ahead, and you'll get my little stamp of approval.
Andrew Denton: Like many, I feel conflicted about Philip Nitschke. I agree he has been a
hero to older Australians in offering them help, and hope, where our law offers them none.
I believe that when he argues it is an individual’s right to decide how they die that he speaks
for millions – and, most likely, the majority – of Australians.
Perhaps one day his belief that a lethal pill should be distributed to all competent adults over
50 will be adopted here. But it seems far-fetched to imagine that will be any day soon. Even
in the Netherlands, where they have been openly discussing assisted dying for more than 40
years, the idea of a peaceful pill remains on the fringes of public debate.
As Philip so pithily puts it, in the last 20 years we haven’t even been able to pass laws “that
would allow a person who was just about to drop dead to speed it up by five minutes” .
But that doesn’t mean a law won’t happen.
And when it does, I have no doubt that the advice of organisations like Exit will continue to
be accessed by older Australians as they assert their right to be in control of what happens on
But I also know there are many Australians – patients, doctors, and nurses – who seek, and
deserve, the comfort of a law that regulates how assisted dying is done, who for, and for what
reasons. If lethal drugs are going to be legally dispensed to assist people to die, then it is not
unreasonable for a society to expect that it be done according to agreed rules and with
I agree with Philip that dying is more than a medical experience. But, for many people, the
two are inextricably linked. I believe that doctors are an essential part of any law for assisted
dying and that, as overseas experience has shown, their involvement will only improve their
skills in dealing with patients at the end of their lives.
But after 20 years of inaction, how to make such a law happen?
I asked Joan Upton to imagine I was a politician. How would she help me to understand the
need for such a law?
Joan Upton: Well, I'd say if it was your father or your mother lying there for years, how
would you feel? If they had that happen to their family, I think they'd wake up, but unless it
happens to them they don't seem to know how to handle it.
Andrew Denton: The repeated call by opponents of assisted dying is that the elderly and the
vulnerable must be protected from coercion. In this, they are right, and there are many
protections built into existing laws overseas that do exactly that.
But what of the elderly described by Mark Johns, Marshall Perron and John Olle? Rational
men and women, from loving families who, faced with an irreversible and painful decline
into death, are searching for a loving way out? If the law offers them no choice other than to
take their own lives violently, who could be more coerced than them?
And yet, on these vulnerable Australians – beloved mothers, fathers, partners and
grandparents – the opponents are silent.
This silence needs to be challenged.
That elderly Australians are killing themselves violently at the rate of more than one a week
because there is no other way they can be legally helped to end their lives is a national
And for all those who do take their lives, how many others lie in nursing homes and
hospitals, faced with nothing but pain, indignity, and sorrow for a life they can never get
back, and who wish they could do the same?
Opponents point accusing fingers at the Dutch and Belgians because, under their laws –
written to help those with “unbearable and untreatable suffering” – the desperate elderly
described by Coroners Olle and Johns can seek help to die.
“It’s a slippery slope,” they say, “proof of societies that have lost their moral compass”. But
who is more moral, the society which steps forward to help those at their most vulnerable to
find a peaceful death or the society that looks away as, faced with no choice, their elderly die
lonely, violent deaths instead?
In the words of Coroner John Olle:
“There is a cry for help. It may be muted, it may be veiled, but it is there nonetheless. And
they all know it – including doctors. They know that this person is screaming for help but no
one is going to answer this call. Not in this society. So they have got to die alone.”
If you’d like to know more, head to the episode page at wheelercentre.com/betteroffdead.
Next episode we’re going to consider the most heartless of all the arguments against assisted
Kevin Yuill: Choice or autonomy. You already have a choice. Suicide is legal. Why do you
need assistance to do something that you can do yourself?
Andrew Denton: And we’re going to meet father of two Lawrie Daniel, 50, and stricken
with MS. What does it mean to him to be told, “Suicide is legal – go kill yourself?” And how
hard is it to even contemplate that without the help, and support, of others around you?
[SONG ‘FORTY EIGHT ANGELS’ BY PAUL KELLY]
Episode 15: Lawrie’s Story
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is dying.
Andrew Denton: Of all the arguments against assisted dying, the most heartless I’ve heard is this.
Kevin Yuill: Choice or autonomy. You already have a choice. Suicide is legal. Why do you need assistance to do something that you can do yourself?
Andrew Denton: That’s Kevin Yuill, a British academic, effectively saying, "Suicide’s legal. What’s stopping you?”
This from a man who, like his approving audience at the anti-euthanasia conference he was addressing, claimed to be "protecting the vulnerable".
Every time I heard that thought expressed – and I heard it more than once while making this podcast – I was astonished at the ease with which those who said it managed to completely overlook the suffering of the people they were talking about.
Today we’re going to meet one of those people and find out why he hopes for a law that will give him a choice about ending his suffering based on compassion, rather than indifference.
This is Lawrie’s story.
Andrew Denton: My name is Andrew Denton, and you’re listening to Better Off Dead.
Every inch of Lawrie and Rebecca Daniels kitchen, from the Bakelite radio to the enamel and chrome ‘Supermatic’ stove, is lovingly recreated from the 1940s and 50s.
Lawrie Daniels: Becky – her thing is the 1940s and 50s, and so when we had the opportunity to build the house it was just a bit of romantic whimsy I guess.
I had to design all the kitchen cabinetry and we found a cabinet-maker who could actually get his head around building from that era. I found the old 50s press-button catches and just a few elements sort of came together.
Andrew Denton: Rebecca, who Lawrie built the kitchen for, has a 1940s hairstyle and wardrobe to go with it.
Rebecca Daniels: All my clothes are vintage. It never quite feels the same if it isn't the true article. Yes, just something that started when I was a teenager, and it's a phase I never grew out of.
Andrew Denton: From their kitchen window Laurie and Rebecca can see kangaroos in their backyard and the sun hitting the escarpment that marks the western edge of the Blue Mountains. It’s the Australian landscape at its most beautiful.
Lawrie Daniels: Well it's funny. When I was a young man I'd seen this exhibition called ‘Golden Summers’. And it was the Australian artists - guys like Arthur Streeton and Fred McCubbin, and there were these amazing landscapes and this incredible light. I thought, “Gee, wouldn't it be nice to live in one of those paintings?”
Andrew Denton: Lawrie and Rebecca met 26 years ago as flatmates.
Rebecca Daniels: All I knew was that the man in the house was a biker who smoked cigars, so I thought, "Ooh, I don't know about this". Anyway I met him of course and he was the loveliest person ever, and he wasn't really a biker who smoked cigars. He smoked Gudang Garams, the kretek cigarettes.
Andrew Denton: Oh yeah, the clove cigarettes! Well you were never going to lose him.
Rebecca Daniels: It's a nice smell! I was actually out here from England on a two-year visa, and that was sort of coming up to the end of the two years, and Lawrie I think thought, "Well I think I have to ask her out before she goes". So I thought, "Why do people do that? You're friends, everything's nice and then you get asked out", and I'm glad he did.
Andrew Denton: How long had you been thinking, “I should ask this woman out”?
Lawrie Daniels: For quite a while. You know I'd been waiting for the lady obviously who sets your heart on fire and makes your pulse race, but you know, someone you can admire and respect, and Bec was always just a really admirable person and always has been.
Andrew Denton: What were the chances of that women moving into the house you were in? You got the lottery.
Lawrie Daniels: The thing about share-houses is they generally tend to fall apart once you start labelling things in the fridge. We just got along so well, and I thought if we can live in a share-house together, perhaps we can spend the rest of our lives together.
Andrew Denton: Two years after meeting, Lawrie and Rebecca got married. But in 2009, everything changed.
Lawrie Daniels: I was diagnosed on my birthday in 2009. Hell of a birthday present.
Andrew Denton: Laurie was forty-four. The diagnosis was Multiple Sclerosis.
Lawrie Daniels: I knew what it meant because I have an uncle that was lost to MS.
Andrew Denton: Is that a moment that just stops you dead?
Lawrie Daniels: The problem with MS is there's no known cause or cure. You know, it's been identified as a disease for well over a hundred years. There's been billions of dollars spent on research and we're just really no further forward, and that's what's scary. So yeah, it's just a terrifying experience, and you're just an ordinary person with no special qualities, and you've just got to try and deal with it.
Andrew Denton: In 2013 Lawrie’s illness began to worsen.
Can you take me inside what it means to your day to day life when a disease like this accelerates?
Lawrie Daniels: Well I'd sort of been battling on, and I was able to get up in the morning and groom myself, put on my clothes, go to work, do a day's work – with enormous difficulty, drive a car, be a husband, be a father. I couldn't do the wonderful things that I'd hoped to do with my kids growing up. So you know Darcy, for example, loves camping. She's a real outdoorsy sort of girl. And I would have loved to have done all that stuff with her, but I just couldn't do it.
Andrew Denton: Why couldn't you do it, because I don’t understand the disease very well. Is it physical incapacity?
Lawrie Daniels: It's the physical incapacity. From left foot drop, I then started to develop this incredible fatigue, so after a little bit of walking I would no longer be able to move my muscles. Eventually that fatigue just takes you over more and more. You know sitting at a desk for seven to nine hours a day was just excruciating, and I just thought everyone experienced a little pain doing that kind of work. And I quizzed my friends and they said, "No, we don’t feel pain sitting at a desk all day" whereas I was in absolutely agony.
Andrew Denton: Where was the agony?
Lawrie Daniels: It was muscular skeletal, so it felt like my spine was on fire, all the muscles in my neck and head, basically right down to the base of the spine. And then eventually I just couldn't work. I couldn't do a full day's work. And so that was awful. I had to go through this terrible period of separation from work. I was shattered because I couldn't contribute anymore. And it wasn't just contributing by going to work. I couldn't do any of the things that a husband should, you know, to be part of that team. Suddenly Becs was doing everything, and I just felt terrible about all that.
Andrew Denton: When the man you love has lost something so important above and beyond the pain, what is there that you can say?
Lawrie Daniels: I really focused most on trying to stay positive and as happy as possible because that's one thing I could do for Lawrie and for the children and then focus on the small details, which I think often worried Lawrie because I think he didn't see that I was looking ahead to the future catastrophe as it were, and I sort of think, "Well yes I know that's there, but I'm dealing with this right now".
Andrew Denton: What in your head is the future catastrophe? What does that look like?
Lawrie Daniels: Well I'm worried that I'm going to go the way of my poor uncle, you know, who became bedridden. He went off to hospital, and then he got pneumonia and he basically drowned in his lung fluid. You know there's so many dimensions to MS, and it takes things away from you bit by bit â€‘ particularly I was a very active man, so you know, my thing is gardening and home development and all that sort of thing. I just can't do that. For example neuropathic pain it's not like normal pain. It's pain that arises in the central nervous system in the brain or the spinal cord peripheral nerves. You can get burning or tingling or numbness. So it's in my fingers and I'm sitting here â€‘ and you want to scream inside because of what's happening in your hands but you've got to carry on a normal conversation and you can't be screaming all day long.
Andrew Denton: You're feeling that now?
Lawrie Daniels: Yeah, never lets up, not for one second and the only time it does is when you're asleep. Other things you get – sometime it's like a bruised sensation in your muscles like you’ve been cooked or you get the sensation like little ants crawling through your skin and muscles, and it's just, it's really horrible. And it doesn't let up and there's nothing you can take for it. They can give you these drugs but often the cure – I mean there's no cure but the medication can be worse than the disease sometimes because there's so many bad side effects to the medications they give you.
Andrew Denton: The pain you were describing, which you’re feeling as we speak, how do you keep your equilibrium is that is an absolutely constant drum beat in your day?
Lawrie Daniels: You just have to deal with the unthinkable. You just have to live with it every day.
Andrew Denton: Lawrie and Rebecca have two children under the age of 14, Bert and Darcy.
How do you explain this to the kids? Have you taken them into your confidence or are you trying to protect them from what’s happening?
Lawrie Daniels: early on when there was obviously something funny with the way dad was walking and he couldn't do the things that he could before, we just explained to them, you know, that there's no known cause or cure, but we also explained that, at the time, everyone's course of MS is different, like we've said, and we just didn't know how this was going to pan out, so don't worry about it, and no matter what happens we still love you.
Andrew Denton: Becky, what is the hardest time for you with Lawrie's disease?
Rebecca Daniels: Trying to help him at his lowest moments when the pain is just so great and nothing is helping and all the symptoms have just worn him down and there's sort of despair.
Andrew Denton: Because it's right at the centre of his system, isn't it?
Rebecca Daniels: That's right and that's a very, very frightening thing. He doesn't have the light at the end of the tunnel with the ending of these symptoms, you know, the tingling, the numbness, the burning. So I might give him a massage and I can tell he's thinking this is not going to do any good and then if it does this wonderful feeling of 'I did something' which - you can't always get that feeling of achievement because you can't always make a difference but you always hope that whatever you do â€‘ even if it takes up just a sliver of the level of pain and discomfort or if I can make him feel that he's not alone.
Andrew Denton: I think that's - if nothing else - just that human presence, another human being - 'I'm here to share what I can - that's what every human being wants, in a crisis.
Lawrie Daniels: You put your finger right on it because I was going to say that often it's just being present. She doesn't turn away. She's got this tremendous courage which I'm sure I wouldn't possess in the same circumstance. She's just present, and you know I have to say Andrew, one of the feelings you have is tremendous guilt. You know this person that I absolutely adore, I've brought this into her life. I'm the cause of so much difficulty for her as well, and I'd give anything to change that.
Andrew Denton: As I looked at Lawrie in his wheelchair, I struggled to shake the image of ants crawling through his skin and muscles. In a life of relentless suffering I asked what was the hardest time.
Lawrie Daniels: Waking up in the morning and it all just hits you. You wake up and you come back out of that oblivion of sleep, and first of all the pain hits you. You remember who you are. You remember the circumstances of your life, and this is another day to face.
Some days are worse than others and that's when you become despairing. And there's no rhyme or reason to MS.
Andrew Denton: Does desperation come with this â€‘ a sense that I need to find a way out?
Lawrie Daniels: It's like straws on camel's back. It's like, OK, first of all you can't walk a little bit, then you're walking with a limp, then you're walking with a walking stick, then you're walking painfully with a four-wheeled walker, then you're confined to the wheelchair. That produces in itself different kinds of pain because you're stuck in the same position all the time. Then you're dividing your time between a wheelchair and bed. You've lost so many things. You can't drive any more. You can't go out. You're pretty much housebound. Yeah, you get despairing and there's this overlaid pain and fatigue thing with everything.
Andrew Denton: You don't want to die the way your uncle died, so what are the kind of options you believe are available to you or that you would like to be available to you?
Lawrie Daniels: I would like when the time comes to have a discussion with my family, obtain their understanding of where I'm at, what I'm feeling, why I think I'm ready to go, and if they're comfortable with it, I'd like to be able to end my life at a time of my own choosing and preferably before things got so horrendous that I wasn't able to do it for myself.
Andrew Denton: Do you have a sense of what that time will look like?
Lawrie Daniels: I think it's different for everyone. For me, you know, I feel I've already lost so much and life so difficult, you know, that time might be now, but really can't say. It depends on how bad things get and how you feel about it.
Andrew Denton: I asked Lawrie if he understood why, sometimes, people in his situation might consider taking matters into their own hands?
Lawrie Daniels: Absolutely, yes. I've thought about that myself many a time, and unfortunately the way the system is, we don't have a nice way of going. If someone has reached that stage where it's preferable in their own mind for them to die rather than to continue living - and that's quite a point to reach because innately we have this fear of death. And I completely understand having lived the experience why people reach that point, either in terminal illness or intolerable chronic psychological or physical distress.
Andrew Denton: I had a senior doctor who works in palliative care say to me the other day that people who suicide are so selfish. What's your view on that?
Lawrie Daniels: This is something I struggled with. Are they being? It depends on people's circumstances. I think in some circumstances perhaps a person is being selfish but we don't know what it's like to walk in that person's moccasins. I don't think it's selfish if particularly people around you are struggling, and you're causing them a lot of grief and trauma with what you’re having to go through. I mean I've never heard a word of complaint from Becky and I'm sure she would nurse me to the bitter end, but I don't know what kind of stress and trauma emotionally I'm putting the family through either, and perhaps it can be a very generous act to terminate your own life.
Rebecca Daniels: Can I just say that I think the word 'selfish' is very interesting, because I'm actually not quite sure exactly what he means, that it's just all you're thinking about is yourself - I'm assuming that's the context. From my point of view I think that the people around you, the family and friends or loved ones who … I think they're probably the ones who are going to be more likely to have selfish thoughts in - you know basically "I don't want you to go. I want you to stay. I don't want my life without you" and I think that that is probably selfish when you consider that the person who has said "I've had enough, and I can't take it anymore" has reached that point.
Andrew Denton: One of the other words which is thrown into this debate is burden – the vulnerable will be made to feel a burden. They will be pressured to end their lives.
Lawrie Daniels: Well it's a question for the family, and this is where the selfishness comes into it, because I think with voluntary euthanasia there will be a discussion with the family. This is not going to happen without the understanding at least of family members. I think it's going to be something that is going to be decided amongst the team, amongst the tribe, amongst the family.
So the idea that your ordinary GP's going to be put in a terrible moral dilemma is not going to happen. There will be people who work with the dying as they do now, who will be specialists in this field, and they will have a discussion with you about why you want to end your life, and if there is any hint that you are ending your life because you feel you are a burden, I think that would start another chain of events, because it's not that people ending their lives because they're a burden. It's because they've reached end of their rope.
Andrew Denton: What Lawrie has just described is exactly how laws for assisted dying work overseas. There are multiple safeguards, including two doctors working independently of each other, to ensure that the patient’s request is based on either terminal illness or unbearable and untreatable suffering. Being a burden, on its own, is not sufficient reason for someone to be helped to die. More than that, all other treatment options have to be canvassed. If the doctors are not satisfied these criteria have been met then they will look for other ways to help the patient. In The Netherlands, for example, two-thirds of all requests for euthanasia are declined. But, in Australia, Lawrie doesn’t have that option.
What's more frightening for you right now? Dying or living?
Lawrie Daniels: Probably living. Living is a very frightening experience . Through MS, I've pretty much lost my fear of dying because sometimes I think there are things that are worse than death. Bec, would you mind getting me a blanket off my bed. I'm starting to get the irrits â€‘ these uncontrolled tremors.
Andrew Denton: Just explain what you're feeling at the moment.
Lawrie Daniels: I can't therma-regulate, so in the heat my nerves just shut down and in the cold a similar thing, so at the moment I'm just getting these controllable tremors…. 01:20:02 … And that's the other thing with MS. There's very little that you can do for yourself particularly once you're in a chair.
Andrew Denton: I guess one of the few advantages is if you're a fan of Dr Strangelove, you can do impersonations.
Lawrie Daniels: [INDISTINCT] and I should get the white cat too. "Today Little Hartley, tomorrow the world".
Andrew Denton: Sitting in the kitchen Lawrie built for Rebecca, their love and mutual respect for each other is powerfully clear. For Rebecca, this makes addressing the unthinkable even harder.
Rebecca Daniels: I have to say that the first few times that he would talk about this I actually got - it was just sort of a wave of fear goes through your body and a taste I must say in my mouth. And I suddenly thought there's a phrase, “the taste of fear”, that I'd never understood. And that was quite strong at the start because it was that feeling of "No, don't think like that. Don't talk like that. I don't want you to go". But as we've talked about it more and I've understood more.
Andrew Denton: Which must be very hard because you know absolutely what he means when he says that. It's not him giving up. It's a reality – another day.
Rebecca Daniels: Yes exactly, and it's very, very hard to reconnect someone with any elements of joy when they are in that much pain, and the sort of playful, humorous Lawrie that I always knew often disappears and it's wonderful when he resurfaces again. And sort of being the optimist that I am I immediately think, "Oh good, you're feeling a bit better and this is a wonderful sign," but yeah, underneath you are realising that it is a big courageous effort on his part.
Andrew Denton: Lawrie said that when the time comes he wants to have that discussion with the family. I presume you've already had the discussion between you.
Rebecca Daniels: Yes. And like I said you know I wouldn't want it but I would want him to be - I want him to do the right thing for himself and for his particular circumstance, and I think it's better to be able to discuss it with family and friends and really talk it through and say goodbye. If you have the option of doing it peacefully and making it something that actually could be quite beautiful, yes, sad but it could be something that's in your control rather losing all control and having your final months or years in absolute misery.
Andrew Denton: Overseas, I’d spoken with people who had been with their loved ones when they had been assisted to die. They described those deaths – at a time of the patient’s choosing, only when the suffering was no longer bearable, and with their families around them – as ‘beautiful’. I asked Lawrie if he had a sense of what a beautiful death might be.
Lawrie Daniels: Well I suppose one that's quick and painless and ideally surrounded by your loved ones and just being able to apologise for anything that you may have done wrong - if someone harbours any grudges against you to ask for their forgiveness, to tell people what you mean to them, and have them, if they wish, to say what you mean to them. But mainly just to be able to know that when it's too much you can go. That's beautiful in itself. Being generous enough as a country to say well we're not going to force you to stick around against your will.
Andrew Denton: Opponents of assisted dying are fond of referring to those like Lawrie as people who don’t value their own lives; as if, somehow, with the right support and encouragement, they can rise above their pain and indignity and find meaning in being alive. I asked Rebecca what she thought of the idea that Lawrie doesn’t value his own life.
Rebecca Daniels: Yes I think that's missing the point, because I think they valued their past life, who they were previously. I think they value themselves to the degree that they know that they're acutely aware of everything that they can't be. But I think there comes a point of when the realisation is that you are being robbed. You are constantly being eroded â€‘ who you are and what you can do. It's hard for me to say, but I… Lawrie absolutely values who he can be and what he can be and what he can contribute. The memory that the children will have of him – he doesn't want to be, as he put it, a broken down decrepit sort of old man who can't manage anything. He doesn't want that to be their experience of him.
Andrew Denton: I put to Lawrie the suggestion that, perhaps, he doesn’t value his own life.
Lawrie Daniels: Crikey. No, there's not a suicidal bone in my body. I'm married to the girl of my dreams. I've got two wonderful children. I'm living in that Heidelberg school painting â€‘ a house I designed myself. It's like life â€‘ it's the best of times, it's the worst of times, but no, that's all I can say.
Andrew Denton: There is a terrible irony that, for a man without a suicidal bone in his body, Lawrie has had to think long and hard about how he might, one day, bring an end to his suffering.
What do you see as your options?
Lawrie Daniels: In the absence of voluntary euthanasia, well they're pretty bleak. In order to terminate your life you can't involve anyone else so it's got to be lonely. You've got to go off and do it by itself. And then you need to work out what you have to do to kill yourself. We can't get hold of Nembutal easily. You'd have to go and download eBooks and try and get drugs from overseas, and a lot of people aren't in that position. Then you've got to think, well how do you kill yourself? So either there's the sudden trauma or you have to stop the blood flow to the brain in some way or you have to stop the airflow in some way and unfortunately. To be certain you have to do it generally speaking a pretty violent say.
My brother-in-law works on the motorways in England as an emergency response person and he sees this all the time. These terrible ways that people end their lives. Your mind can go to terrible places and this is the reality. There's no easy way to kill yourself unless there is medical assistance.
Andrew Denton: And in your case even harder because you are physically capable of a very small range of things.
Lawrie Daniels: The single car accident is out. I was lining up gum trees along the side of the road that I thought I might be able to use but I can't even drive a car any more. It becomes even more difficult.
Andrew Denton: Do you have a sense of helplessness about this?
Lawrie Daniels: Yes, and anger too, that still in this day and age this just isn't a regular human right.
Andrew Denton: The life-ending drug Nembutal may offer Lawrie the best prospect of a merciful end at a time of his choosing. But it’s illegal. This adds another dimension to an already excruciating dilemma.
Lawrie Daniels: Well you worry about the repercussions. If, for example – you know, you can't involve someone. She can't hand you the pills or she can't help you in any way. But you even wonder, if you were to organise the Nembutal and you gather everyone around and you have the ceremony, is assisting suicide not preventing suicide? Would they be in trouble because they didn't call an ambulance while I was dying? You just don’t know the legal ramifications.
It's all right for you. You talk about selfishness – well that would be selfish if you're OK, you're out of your suffering but then you've created a whole range of problem for the family, which is perhaps expensive and traumatic. The whole point is to avoid the trauma, and then when you start thinking about suicide and it's going to be lonely, then you think, 'Well, who's going to find the body. What condition will my body be in when it's found? Who's going to have to go to the morgue to identify it? What other people am I going to traumatise? Is it going to be the policeman who turns up or the fireman or the other emergency services? It's ghastly, thinking through that process.
Andrew Denton: Rebecca, have you thought through this process? The way Lawrie just described it?
Rebecca Daniels: It's very difficult. Yes, I'd be worried about the ramifications because knowing his thoughts and his wishes, that side of me would be saying obviously I must step in, but the part that sort of wants to help and do the right thing would be thinking well, I have to call the ambulance, and then you're thinking, "Well I don't want to then be charged" if he's gone and I'm somehow charged with being an accessory or in any way enabling him, does that mean that I then won't be able to be the mother I have to be to our two children. And then also how do you say to them, "Yes, oh by the way, yes I knew this was going to happen and I didn't do anything. How's that going to affect them? Are they going to blame me for the rest for their lives?"
Andrew Denton: But from what you were saying you would definitely have had the family conversation before anything like that would happen?
Rebecca Daniels: Yes I think this is where if it was a properly sanctioned act that could happen and you're actually allowed to do this you wouldn't have any of these worries. This is the whole point.
Lawrie Daniels: The other thing you've got to think about it is what if it goes wrong, You can have there's this failed suicide attempt that actually leaves you worse off physically with more organ damage or whatever or you could end up in a psych ward being assessed for seven days or whatever it is, and even if you did it in the family home and something went wrong what would be the repercussions then because Becky would have to call the ambulance and then potentially the police are involved. It's just a nightmare.
Andrew Denton: No matter which way you look there's a terrible arithmetic that [INDISTINCT] with the progression of your disease, there's no clear or easy set of options and many of the options that you might take carry great risk.
Lawrie Daniels: Yes, and I just want the option. I want the choice. I'm not saying I would avail myself of it immediately. I would just love to know it's there. In terms of - I'm almost in a palliative care situation now, which - you know, I've only just turned 50. I've got 17 years before I even reach retirement age, and so I'm looking potentially at least 17 years of palliative care just trying to keep on top of the symptoms. And I just like that to be part of my palliative care options, and I think just knowing that it was there would be palliative in itself. It would be such a comfort, Andrew. I can't tell you. And I've even heard that a lot of people with the option don't use it. It's just this wonderful comfort to know it's there.
Andrew Denton: Lawrie is right. In Oregon, for example, I had discovered that more than 30% of terminally ill people prescribed life-ending medicine, ultimately chose not to take it.
I now want to do the impersonation of a very patronising human being and say to you, "Lawrie, are you sure you're not just depressed?"
Lawrie Daniels: This is a funny argument, because what are we saying, that only a happy person can terminate their life? Or are we saying you can't be depressed in order to end your life, but by very definition if you want to end your life you must be depressed so therefore you can't end it.
Andrew Denton: Catch 22.
Lawrie Daniels: To my mind if some one's got a terminal illness or they've got a chronic illness and they're in incredible psychological or physical distress the doctors can't address, and that person was happy and not depressed or anxious, that in itself would be the mental illness. That would be to me what is unusual.
But I think once we have the process up and running, the process will filter out people who are just simply depressed and who could benefit from treatment rather than ending their life, because that's the thing with suicide - a lot of people who suicide are in the moment. They can't see a way out, and they're not being addressed, but if they had somewhere where they could go and say, “Look I'd like to end my life, because I'm in chronic turmoil”, then hopefully we'd filter those people out.
Andrew Denton: Again, Lawrie is right. In Belgium, the Netherlands, and Oregon, simply being able to talk openly with your doctor about wanting help to die immediately leads to questions about why. If mental illness is thought to be a significant factor then, by law, psychiatric help must be sought. As a consequence, lives that might have been lost to suicide are saved.
When people like Kevin Yuill say …
Kevin Yuill: Suicide is legal. Why do you need assistance to do something that you can do yourself?
Andrew Denton: ..what they’re really arguing is that, to help Lawrie die, even at Lawrie’s request, would be a moral failure by the rest of us to protect society’s vulnerable.
Yet who could be more vulnerable than Lawrie? A man with a degenerative and cruel illness, for which there is no cure and no effective treatment, and who seeks the option of a compassionate way out, should he choose?
There are thousands of people like Lawrie in Australia today; chronically and terminally ill people of all ages from whom our politicians continue to turn away. Too many of them ultimately take Kevin Yuill’s advice and end their lives, violently and alone, because they see no end to their suffering under our current laws.
Even so, Lawrie remains hopeful that Australia won’t always be like this.
Lawrie Daniels: Australia has led the world in so many socially progressive ways. People from all over the planet want to flock to live here. We've got something special and we had the first voluntary euthanasia laws in the world, in the Northern Territory and it was squashed. And yet the majority of Australians want this. They want to talk about it. There are - Europe has laws, America has laws. I think South American countries have laws. Canada's high court has just determined that it's a basic right. And I feel sad for our country because we used to be the forefront of social progress and we're lagging behind now, but I think it will be inevitable, and why make it so difficult. People are suffering. People can't wait for this. I can, but there's others who are in desperate circumstances who would love to avail themselves of this tomorrow if they could.
Andrew Denton: If you’d like to know more head to the episode page at wheelercentre.com/betteroffdead.
Next episode, after travelling around Australia and overseas seeking the truth about assisted dying, I go back to where this journey began and sit down with Paul Russell, founder and director of the HOPE anti-euthanasia coalition, who had invited me to attend their international convention in Adelaide earlier in the year. I had left the convention armed with all sorts of dark warnings about what is happening in places where laws for assisted dying exist. Now, several months later, I’m keen to take him through what I’ve learned to hear how he responds.
[SONG ‘FORTY EIGHT ANGELS’ BY PAUL KELLY]
Episode 16 – Abandon Hope
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is dying.
Andrew Denton: My name’s Andrew Denton and, you’re listening to Better Off Dead, my search for the truth about assisted dying.
It began when I was invited to attend the HOPE anti-euthanasia convention in Adelaide, featuring speakers from around the world. Here I heard dire warnings about what was happening in Belgium, The Netherlands and Oregon where laws to help people die already exist: I heard of the vulnerable being made expendable and of people being killed without their consent. I heard of blind twins being euthanased after having to shop around for two years to find a doctor who would do it.
And I heard of a slippery slope where the number of people seeking to die was sharply on the rise.
Above all, I heard two key accusations: That the he safeguards don’t work; and that the elderly and disabled were threatened. I took careful note of it all, then took off overseas to see if their warnings held true.
Now, many months later, I sat down with HOPE’s director, Paul Russell, to talk through what I’d learned.
Andrew Denton: We’ll start with the easiest question. Can you give me your name, your age and your official position?
Paul Russell: My name is Paul Russell, I am 57 years old, and I am the director of an organisation called HOPE: preventing euthanasia & assisted suicide.
Andrew Denton: Can I just say I have extreme envy. I just heard your voice in the headphones. You have got the voice I always wanted. [Laughing]
Paul Russell: It happens sometimes.
Andrew Denton: You have got a radio voice.
Paul Russell: [LAUGHING] I have got a radio head too I think.
Andrew Denton: Paul Russell is a welcoming, avuncular, man with a ready laugh and an appetite for a fight. Formerly a senior officer for the Catholic Archdiocese of Adelaide, he quit full-time work 4 years ago to take up the battle against assisted dying.
Andrew Denton: On the question of euthanasia/ assisted dying, if you look at Canada, you look at the States, even New Zealand, there seems to be an increasing momentum for people to want to know more about and have more choice about what happens at the end of their life. Do you have a sense that maybe you are swimming against the tide of contemporary history?
Paul Russell: [Laughing] I guess that's possible. I sort of hope not obviously. Yeah, it may well be the case. But being motivated by my sense of what justice is, ultimately I am not going to throw in the towel because there is a tsunami coming. I am not going to stop advocating. That is just who I am.
Andrew Denton: And I should preface the conversation we are having by saying I think all the questions that you raise and that are raised by those who oppose these laws are valid questions. They should be asked and must be asked about the vulnerable, those who may be threatened. How if you have these laws do you make them safe? So I genuinely respect the conversations that you raise. My question is more about how those conversations are held.
Paul Russell: Mm. No, that's fair enough. I think there’s sometimes frustration on the polarised nature of debate
Andrew Denton: At the symposium one of your guests by video link was Theo de Boer, the Dutch professor ethicist, who had resigned from the euthanasia review committee and become a critic of the system. . He talked about euthanasia becoming a default option for dying cancer patients and he particularly talked about the annual 15% rise in euthanasia deaths in the Netherlands as being very alarming. Why do you find that alarming?
Paul Russell: Well a number of things. Now we must recognise that the law in Belgium and the Netherlands was broadly written, and that was for people at the end of life, for whom pain management wasn’t sufficient in subjective terms, that there would be a way out for them in terms of euthanasia or assisted suicide. You are really looking at a ceiling of probably somewhere in the order of 2, maybe 5% at a stretch, of people that that would have affected, so I would have thought by now we would have reached a sort of ceiling or a plateau in the numbers of deaths. Well that is clearly not the case; it is clearly still escalating.
But what that points to I think is really a sociological matter that could be used to draw a conclusion that the societies there have become very blasé about accepting this. And I think what concerns me most is the stuff that you almost can't prove, you know – how societies change, how people's views of other peoples change. Are we going to be sort of translating in some way, perhaps in some incremental way, a view of people with disabilities, people who are ill, people who are ageing, people who have all sorts of issues, who aren’t perhaps contributing to society in the way the rest of us do, for example, are we going to be translating that sort of view writ large across our community in some way? And I think the figures suggest that in some way.
Andrew Denton: That 15% figure though when you put it in context becomes something different because it represents a population which, like ours, is getting older. The vast majority of these cases have always been and still remain cancer, heart failure, neurological, and the number is less than 4% of the people that die in the Netherlands every year. Which seems to me to be quite a long stretch from the idea that the genie is out of the bottle, that this society is somehow in freefall.
Paul Russell: Well you know that was Theo's call. I'm not sure I would have used that form – I can't, I’m not there. He's the one who is seeing it. I wouldn't say Theo is now a spear thrower or a banner carrier for our side of the argument – not by any stretch.
Andrew Denton: The interesting thing is that the Dutch themselves overwhelmingly support their own laws. I think it is 85% to 5% opposed, the medical professions are on board with it; no mainstream party has attempted to repeal or amend the laws.
Paul Russell: That’s right. Mmm hmm.
Andrew Denton: They are very comfortable and confident with how their laws are operating. So when I hear suggestions, which are often made, that the Netherlands is a society which is losing it, I think that's a misrepresentation of how they themselves see what's happening.
Paul Russell: Well, I mean you could turn that around and say the fact they don't see there is a problem is a self-evidence of the problem. [Laughing] I mean where do you go?
Andrew Denton: Well that that is a little bit patronising, isn’t it? I mean...
Paul Russell: I'm saying you could suggest it; I'm not saying you should, by any means. None of this is exact science. So there are a lot of studies that look at the figures, and I think that is a really important thing to do, and there are from time to time horror stories that come up, and it is important to explore them as well. And look, I could be accused if you looked at my blog of being polemic at times with some of the data etc. You might say well in a sense that is my job, and yes, we want to win, but at the same time you have to take the time to look at the truth of all this. And really it is not so much that there is an empirical framework to the deepest reasons of why I think the way I do; it's more what I think is an understanding of the human condition, the fact that injustices do happen, the fact that the law cannot always fix problems, nor can it contain problems, that perhaps we need to find better expression for the sense of compassion that we have. Yeah, so it is not sort of measurable in that sense.
Andrew Denton: In truth though, there is no law that would ever pass muster for you because you fundamentally object to the idea of there being such a law.
Paul Russell: No, I'm sorry that's a slight misrepresentation of my views, but you are not to know otherwise.
Andrew Denton: No, look, please tell me I'm wrong. Tell me the law that would pass muster for you.
Paul Russell: I don't think there is one. That's the point. Sometimes I have looked at bills and I have thought, ‘Hey, wow, that is pretty good’, but when you look at them there are some fundamental things that can’t be addressed in the black letter law. My friend Craig Wallace talked about this in the Senate enquiry last year. He was saying, “Well what is terminal illness? Give me a definition of terminal illness”. And his point was that many of his friends in the disability community have situations that, other than for some support or other, actually are terminal. So how do we write a framework that works?
I think also the problem is once we cross a boundary that has been in existence for many millennia, we have already got to pause and say, “Well OK, we have held the line on this for so long now, there is a reason for that”. And I think was it Chesterton who said something about before you move to knock down a fence perhaps you should ask why someone put it there in the first place. They're big questions.
Andrew Denton: But there is another way of looking at this, which is that all societies face the terrible reality of people that die awful deaths that are beyond the help of medical science, so the other way to look at it is: well, as a society, knowing what we know with our vast improvements in medical knowledge, is there more we can do to help these people, which is yes, you could say that is centuries of tradition that we are turning against, but societies always change. 3000 years ago Spartans were throwing babies off cliffs. As human beings grow and learn more, we also change what it is we do, based on our knowledge.
Paul Russell: Look, that is self-evidently obvious, but it still doesn't change the fact that it is an incredibly serious matter. You mentioned there about people we can't help. I don't think that's the case. I mean unpack what “can't help” means. We can help; we certainly can help. We can keep developing. I wonder too whether sometimes the whole process of innovation and development of society is because we are banging up against the wall and we decide how are we going to stop that? Do we knock the wall down? Or do we allow that creative tension to move us on in the fields of science?
Andrew Denton: Or do we create a ladder which allows some people to go over it?
Paul Russell: Ah, well, you go changing my metaphor. [Laughing]
Andrew Denton: Improving, improving your metaphor.
Paul Russell: [Laughing]
Andrew Denton: You talked before about shocking cases, individual cases. One which I know that HOPE talks about, and a lot of people talk about, is the deaf Belgian twins Marc and Eddy Verbessem. What do you know of that case?
Paul Russell: That's a really hard case. You know, you had the story of these two twins who had twin ailments, and a beautiful story of them having a life together. And they're going blind, you know. They were deaf and they had other difficulties, so their sight was obviously critical to them, and I have every empathy with that situation. But they looked for two years to find a doctor who would agree to euthanase them, because essentially the presenting story is that we have two people here going blind. I mean you can't – I find that – in my head I have a conflict in a sense with that because you could headline – look, I may have even done it – “Twins euthanased because they were going blind”. I mean [INDISTINCT] der! That is ridiculous! We have to accept that there was a back story and it was a very difficult back story, but at the same time it is not a terminal illness. They had other degenerative illnesses certainly.
But I struggle with this idea that you can go to a doctor –I don't know whether it was their regular doctor or whatever, and he says no, and then you say, “Well I will go and find somebody else,” and this process of taking two years. So even in that society clearly at least for whatever number of doctors they saw who said no, there was some sort of recognition that, “No, no, no, this is not where our law is intended; this is not the solution for you,” whatever. And then they found – well they always were going to find someone who would do it. To me that is one of the problems with these laws. Having to sort of go to two doctors is not a roadblock for someone who is just simply suicidal; it’s not.
Andrew Denton: Can I unpack a few of the things you have said there. Not a terminal disease, but as you know, under Belgian law, that is not the criteria. It is unbearable and untreatable suffering. The second thing is this idea of doctor shopping. Their GP, the family’s GP – and the GP is always the first port of call in these cases. He said – and he swore this in an affidavit to the Canadian Supreme Court – that there was no doctor shopping. So I would be inclined to believe his version of events.
Paul Russell: So would I. I actually hadn't heard that. But that was as it was reported – that they had looked for two years.
Andrew Denton: I think maybe you need to change the story on your website.
Paul Russell: [LAUGHING] Perhaps I do! You know that is a difficulty, that is a real difficulty in this stuff, and you know there are those that sort of pick at when people get things slightly wrong that that, but...
Andrew Denton: Well, but I raise this because I think it is important.
Paul Russell: Oh, it is important, but to me again, as I went back earlier, from what I saw about that story, it was an example of a problem that I perceived. It wasn’t proof. You know what I mean?
Andrew Denton: Yeah, but it is held up – you know that the personal stories are the most powerful ones in these arguments. I am sure you are aware that the parents and the siblings of the brothers supported this choice, which puts another complexion on it too – the compassion they showed to support what would be the hardest choice anybody could ever make.
Paul Russell: Agreed. Yes, no question. I definitely knew of that.
Andrew Denton: As research for this podcast we contacted the family of those boys and they expressed to us their great distress that anti-euthanasia coalitions, including HOPE, would be using their story as an example of a law gone wrong, and you know, you are a very decent guy, does it bother you that you are adding to their already considerable anguish by making stories like this, which you have already said you don't know all the details, making stories like this into, if you like, a bullet to fire in the war?
Paul Russell: OK, that is a really good point. I certainly don't want to add to anyone's distress personally. It does upset me to think that I may have. I do get polemic at times. I don’t doubt that. And I think in terms of talking about life and death and justice etc I think it is quite visceral. There is a tendency to that.
I'm not justifying it. I was not aware of that. But from this distance it is hard to check. I am quite sad to hear that that is the case.
Andrew Denton: Let's talk about disability. I spent some time the other day talking to Joan Hume, who is fantastic. It was really disturbing and eye-opening to me to hear the genuine place of concern from which she comes, and which I am sure you share, which is there are attitudes expressed in this society towards disabled people which are probably, to put it mildly, dismissive of them.
Paul Russell: Hm. No, that's true.
Andrew Denton: At the symposium Nancy Elliott from New Hampshire got up and spoke about, you know, ‘If you are arguing this publicly, you need to have several lines of attack, particularly if one of them gets knocked over. And she talked about disability abuse as being a particularly strong thing and to get disabled people to speak. In fact I think she used the expression, ‘The disability argument is really kicking it right now!’
Paul Russell: [Laughing]
Andrew Denton: Which was a very American expression.
Paul Russell: I suppose it is.
Andrew Denton: The clear impression I got from the HOPE symposium, was that people with disability were going to be more vulnerable under these laws, and perhaps were more vulnerable under these laws in this country.
Paul Russell: Yep.
Andrew Denton: So when I went to the Netherlands, Belgium and Oregon, I went to the peak disability groups in these three countries to ask them, and I put to them in a neutral way, I said, “These are not my questions, I’m going to ask you a whole range of them – about coercion, vulnerability, about being made to feel less valuable, about there being pressure because it is more economically beneficial for the country”. I asked them a suite of these questions, and unanimously they said, “No, there is no issue”. I will read you a couple of the quotes.
This is Pierre Gyselinck, who is the president of the Belgian Disability Forum: “I have not and we do not have any knowledge about it” – this is vulnerability or insecurity – “But I am sure, and in my opinion and in the opinion of the BDF, we have no fear that people with disabilities are more vulnerable since the law was installed”.
Illya Soffer from Ieder(in) in the Netherlands, who represent 250 disability organisations, when I asked about safeguards, she said: “I think the most important protection in this law is this issue of your own judgement. The other protective issue is there must be a case of unbearable suffering. This must be assessed by two or three doctors and also the family around and the person themself. So I think that procedure, which is a very strict procedure, if you look in the Netherlands, I think you see more people complain on how strict the procedure is than on how coercive it might be for people who are vulnerable to these kind of practices”.
And Bob Joondeph, the director of Disability Rights Oregon, said: “Since the law has been passed we have not received a complaint from anyone, other than a complaint from a person who was paralysed who was concerned that the law discriminated against them because the law requires a person to self-administer and they were physically incapable of doing that”.
It bothers me that the impression given to the disability community here in Australia is they have something to fear, whereas the lived experience of peak disability representatives in these countries suggests quite the opposite.
Paul Russell: You will find – I mean a disability group is not a homogenous community by any stretch of the imagination; they are incredibly diverse. You will find, even in Britain, there are some disability activists who sort of see, “No, I don’t think there will be a problem”. All I can really say is that we don't dismiss these concerns. Just as much as Belgium and the Netherlands are different societies, we should be striving to work hard to ensure that people with disabilities are respected, valued, an integral part of our communities in every respect.
Andrew Denton: I agree entirely but should you be amplifying those concerns? Which is what I think you do.
Paul Russell: Oh well I am interested to hear that. I am not amplifying them. I'm very conscious of the fact that disability people need to speak for themselves in the disability community. I let them speak for themselves. They are the ones saying this.
Andrew Denton: The information people here in Australia people are getting is a very fear inducing picture of terrible things that are going to happen to them, but in the places where these laws exist those terrible things haven't happened.
Paul Russell: They are different societies. That is the only comment I can make about that, and also the fact that these people in Australia are making it in their context. They're not talking in the Belgian context. They are saying, ‘If we brought a law in here right now, this is the way we experience life here. This is what we fear’. Now whether those fears are actually, again, empirically able to be proven or not, I don't think it really comes into it. It's their story! [Laughing] Leave them speak for their story.
Andrew Denton: The other thing I noticed Nancy talked about – and why this is relevant is she was guiding people about how to prosecute the argument in public.
Paul Russell: Yeah.
Andrew Denton: And the list of things – Another one was elder abuse. Similar thing – that the elderly in our society and in any society are vulnerable. So a very, very fair question to raise in the context of assisted dying. Probably affects them more than any group. So again I went to the peak elderly groups in these three countries to ask their view on these questions of vulnerability and coercion, and again, across the board it was, ‘We do not see any evidence of this’. In fact it was interesting, they went further. They said, ‘It is the opposite’. They said that, “This has empowered our members, and for those who face the prospect of a terrible death it has given them comfort”. So I question the assertion from someone like Nancy, who was at your symposium, that the elderly are facing abuse, when the lived experience of the people in these countries is the opposite.
Paul Russell: Again, I come back to you and say, look, they are different societies. I don't know that we can compare them. Again, it is encouraging. But the point you made about sort of people feeling empowered by having this knowledge. There is truth to that; there is no question about that. But what I would question in turn is also that I think if people had a lot more understanding about their ability to exercise their autonomy in the framework of a good care plan and with good quality palliative care, absent of euthanasia, I think there is every chance that they would find the same reassurance, and that is the problem I have with it. You know, elder abuse is a modern phenomenon that is of serious concern, and again, I tend to point to the fact that this is evidence of this concept that people are vulnerable. They are vulnerable, they are in difficult circumstances, and the connection between euthanasia and assisted suicide therefore, though not proven entirely, is definitely worth considering.
Andrew Denton: Definitely worth considering, but based on their words I think it is fair to argue that by their assessment it is possible to create a system where elder abuse is not an issue.
Paul Russell: Well, absent the human condition perhaps. I don't think you could...
Andrew Denton: But they are human beings.
Paul Russell: No, no, no. I’m just saying I don't think you can be that absolute about it.
Andrew Denton: No, but it is certainly possible to say that in their countries they were capable of doing that, by their assessment.
Paul Russell: No. I mean I take you at your word on that. I haven’t...
Andrew Denton: So Paul – Aussie, Aussie, Aussie, Oi! Oi! Oi! – where is your faith in us? Why can’t we do this?
Paul Russell: Perhaps we can. Perhaps we can. But I don't think we can fall into the trap which I think is quite utopian really, in saying that we can actually create a law that works. To think that every doctor is going to always work ethically, that there is going to be no circumstances where someone's consent to a euthanasia or request for assisted suicide isn’t influenced by all sorts of sub-currents of thought, suggestion, pressure – I don't think we can do that, and again, that is the point, when you think of disability, when you think of elder abuse, where these things can occur. More than that, simple little nuances of words or thought – “Oh it’s your decision, Grandma”. It sounds like a good thing just to affirm someone's autonomy and say, “It is your decision”. But what does Grandma hear? You don't know. There is a lifetime of experience in between those two persons that informs what Grandma hears when you say, “It’s your decision”. So I really don't think when we are talking about difficult circumstances and interplay between all sorts of personalities, that we can actually do something in terms of a law that we can sit back and say, “That works”. I just don't think it's possible.
Andrew Denton: No, I think the overseas experience would disagree with that.
Can I talk about something which I think is more problematic, which is I think about clear misinformation, and it's Alex Schadenberg, who I had a long conversation with at your symposium. And I bought his book, Exposing Vulnerable People to Euthanasia and Assisted Suicide, which I think is still for sale on your – is it a good seller?
Paul Russell: It has been actually, yeah. Yeah.
Andrew Denton: Is it peer reviewed, do you know?
Paul Russell: Well what is it doing? Just citing studies that exist, which I imagine because they come from journals are themselves peer reviewed, yes.
Andrew Denton: That's correct. They are peer reviewed. His big claim is that this is not just his opinion but that he has gone back to the original surveys done by medical and other authorities in Belgium and the Netherlands to see what it is they're doing, and he said in this book that this is proof that no assisted dying or euthanasia law can protect vulnerable citizens. For example, he went to the New England Journal of Medicine 2009, an article called ‘Medical End of Life Practices under the Euthanasia Law in Belgium’ – it is a page-turner, let me tell you. And what it is looking at is the unreported cases of euthanasia, or those deaths occurring without explicit patient request. Now Alex's conclusion was this: “Most people who die by euthanasia without explicit request are from a different demographic group to those who request euthanasia, and that this group is more vulnerable – that is, they are elderly, often incompetent patients with cardiovascular disease or cancer, often dying in hospitals”. On the face of it, that is a pretty scary conclusion. That is basically saying that there are doctors there who are killing elderly, vulnerable patients.
Paul Russell: Yes.
Andrew Denton: So when we went back to the original articles, which are peer reviewed, as you said, we found that he had omitted the conclusion of the article, which directly refutes what he is saying the article is about. And what he omitted was this: ‘We found that the enactment of the Belgian euthanasia law was followed by an increase in all types of medical end of life practices with the exception of the use of lethal drugs without the patient's explicit request. No shift towards the use of life ending drugs in vulnerable patient groups was observed’. That's a pretty significant omission, wouldn't you say?
Paul Russell: I would have to go back and fully re-read it myself, but – no, look, I need to have a close look at that, and I will.
Andrew Denton: It really worries me, because we found almost half a dozen instances of this, and if I may, I will give you one other clear example, and I will take you through to my final point about it. Another article he says that he has been through is the ‘Physician Assisted Deaths under the Euthanasia Law in Belgium’, a population-based survey which was in the Canadian Medical Association Journal of 2010, peer reviewed. His conclusion was, and I quote: “that vulnerable people die by euthanasia in Belgium, and these are not being reported, making it an invisible crime”. An invisible crime – that is a serious allegation. But again, he hasn't included the conclusions that the authors of this article draw, which absolutely disagree with what he is saying is their conclusion. This is what he left out: “As was shown in other research, no evidence was found to support the fear that once euthanasia is legalised the lives of elderly patients would be more likely to be ended with the assistance of a physician. Older patients thus seem not to be at higher or increasing risk of euthanasia after legalisation”. I mean this is really – not to put too fine a point on it, it is intellectual dishonesty, isn't it?
Paul Russell: Again, I would have to go back and have a look at it. I have read those reports but it was some time ago.
Andrew Denton: Really what Alex is doing here by carefully picking the information he needs is trying to paint a picture of a cold and uncaring medical community committing invisible crimes. Isn't that right?
Paul Russell: Well, that is your opinion of it. Um...
Andrew Denton: It is hard to draw another conclusion.
Paul Russell: Well I know Alex quite well. I don't imagine he would intentionally do that at all. Um...
Andrew Denton: Significant omissions though. What would explain them?
Paul Russell: I really can't comment. I wish I could. I am slightly dumbfounded by it, I must admit. And yes, I mean you make the point I do sell the book, and so there is an association there. I really would like to have a look at that further.
Andrew Denton: The fact you sell the book is one thing but what is of more interest to me is that there are half a dozen endorsements from different Australian politicians, who are clearly happy to disseminate what I think most politely you could call is highly compromised research, and my question to you is: these are serious questions, they should be raised about how safe is the system, who is vulnerable and how do we safeguard them. Wouldn't it be better if the information in the public square was not muddied with this kind of distortion?
Paul Russell: I think the information in the public square should be as accurate as possible. In terms of the endorsement by a number of members of Parliament, I think it is easily understood that they read the book and thought, ‘Oh OK’. And so I don't imagine they would have gone back and checked every last dot and tittle, as they say. So you know I think that is perhaps drawing a little bit of a long bow. But yes, you know, I think you are right
Andrew Denton: Let's finish on probably the most difficult area of all with this, because it is such a grey area. What is called the LAWER cases – life-ending acts without explicit request, which is where they look at the clinical practice of doctors dealing with patients in their last 24 or 48 hours of their lives. Now, I am assuming you are aware that there was a study published in the Canadian Medical Association Journal last year which revisited those something like 1000 cases that have become so controversial. Because I know that, as HOPE puts it, and as I think Schadenberg also puts it, that these were undeclared euthanasia deaths. They were not reported. Is that right?
Paul Russell: It depends on which study you were talking about. There were a number, there were some that went back to the death certificates and...
Andrew Denton: The number that is generally thrown around is about 1000 cases, which is a lot.
Paul Russell: I guess it is quite significant, yeah.
Andrew Denton: Of unreported deaths. – so they revisited it all to try and examine to what extent they truly did represent the non-voluntary termination of life, and the report found that while doctors reported the measures they took as life-ending acts without explicit request, they perceived their actions in terms of symptom treatment; they did not classify their acts as euthanasia. Does that make sense to you?
Paul Russell: Yeah, it does. There were some – I think it was a study, again going back from death certificates, on the incidence of unreported deaths in I think it was the Netherlands, where they sort of looked at them and said, “OK, some of these clearly the doctors didn't think they were euthanasia but for some reason the researchers did”. There were some where there was some confusion about it. There were some where it had been clear that people had earlier identified that they would want to be euthanased. So it is not a category – you can't turn around and say, “Well, you know, there is 1000 murders for you!” You just can't do that. But when you consider the fact that consent is one of the hallmarks of both Belgian and the Dutch legislation, I mean evidence of it is an important factor.
Andrew Denton: I agree, and when I first read this I was really confronted, and like you, and like I think any reasonable person, I went, “What the hell? How could that be?” But as I have looked more closely at the studies, what it is describing is doctors increasing combinations of drugs, in particular opiates, which aren't a euthanasia drug, in response to pain and the very distressing symptoms of people who are dying, and they didn't have the explicit request of the patients because they are in the last hours of their life, at most the last 48 hours – in fact almost 60% of them had had a conversation prior to that. But that this was a compassionate and decent act of medical care at the end of life, the kind of act which happens in palliative care units around the world and in Australia on a weekly basis. Isn't that right?
Paul Russell: In terms of opioid use, yes, that is exactly right. They can't be classified as euthanasia in those cases, so life-ending without consent – I mean someone has determined that the life was ended by that action. In terms of double effect principle, if the intention is to relieve pain, to relieve symptoms, and a known side-effect is the possibility of hastening death, that is not an unethical act. It is not euthanasia.
Andrew Denton: No, that is correct. And what they found with that survey last year, when they went back to it, is that almost 90% of the doctors said that that was their primary intention. So it was indistinguishable really from what is accepted, and I believe by HOPE and others as supported practice in palliative care.
Paul Russell: It is a supported practice in palliative care. I mean there has been raised at some point in time, “Oh well, you can't know what a doctor's intention is”. Well, you know, I think you can measure it in many, many ways. Certainly the fact that you mentioned that it was by use of opioids tends to suggest that it wasn't – that those cases weren’t euthanasia cases, should never have been reported as euthanasia cases and were in fact good medical ethics. It tends to suggest that. Because as Dr Paul Dunn says, a palliative care specialist, and others, when you are on an opioid regime for pain management, you can't just simply sort of up the dose with the deliberate intention of killing anyone anyway. Because you have a tolerance in your system to it, it is almost impossible, and it would be clearly discoverable on the medical charts that you brought in a semi-trailer load of opioids to do it. That doesn't work.
Andrew Denton: And that is an interesting point. You know, everyone in the medical profession, unless they are being ignorant or in denial, knows that patients are being hastened, their deaths are being hastened around Australia in different circumstances quite commonly. It is an open secret.
Paul Russell: No, I don't think it is. I don't think they are being hastened at all.
Andrew Denton: I have on the record, doctors – including a senior palliative care physician – talking openly about hastening death and also talking about that they know that this happens within the medical community.
Paul Russell: Are you talking about cases where they deliberately...
Andrew Denton: Yeah, knowingly hasten death.
Paul Russell: No, there is a difference between knowingly and deliberately.
Andrew Denton: Mm hmm. Same thing.
Paul Russell: No, it's not the same thing.
Andrew Denton: No, no, no. As in, they knew what they were doing and they knew why they were doing it.
Paul Russell: It's still not – was their intention to kill the person?
Andrew Denton: Yes, yes, their intention was to hasten their death.
Paul Russell: So their intention was to kill.
Andrew Denton: Their intention was to hasten their death, yes.
Paul Russell: Come back again – their intention was to kill?
Andrew Denton: Ah, I am always interested in the use of that word “kill”. As one palliative care physician at St Vincent’s said to me, “It is murder”. And I said, “But you are an intelligent man, surely you see that there is a significant difference between an aggressive and unwanted act and a sincerely requested compassionate act”. He said, “Nope!”
Paul Russell: Again, it goes back to intention. Was the intention to kill?
Andrew Denton: No, the intention was to end that person’s suffering, and as palliative care themselves acknowledge, there is some suffering that can ultimately only be alleviated by the death.
Paul Russell: Again, we are talking about – you said the intention was to end their suffering, yes? That is not the intention to kill.
Andrew Denton: I would suggest you are splitting hairs here.
Paul Russell: No, I am not. It is a well acknowledged moral distinction and ethical distinction.
Andrew Denton: And what sits on the other line of that ethical distinction, as I have discovered, because it is very strong within palliative care, is a whole group of patients screaming for more pain relief who are refused it. And that to me is a real problem.
Paul Russell: They should not be being refused pain relief.
Andrew Denton: Look, their own survey of the 106 palliative care units in Australia last year showed that 22% of their patients died in moderate to severe pain, so by their own admission they simply can't control all pain.
Paul Russell: Look that makes sense that they would say there were some cases, because if they were to say, “We can fix it all, you do not have to worry at all,” they are going to open themselves up to some pretty massive lawsuits probably.
But yes, I agree. We cannot always help all people. I mean I can't sit here and say, ‘Don't worry; your end is going to be just fine’. I don't know that. I can't confirm that. But I do know there are people who believe they have the expertise and have used their expertise over many years that have achieved that. What we can see clearly, however, is there is a need for improvement in that area.
Andrew Denton: I don't think anybody is arguing that there should be less resources put into palliative care or that it doesn’t serve a valuable service or that the people in it aren’t deeply impressive and doing very hard things. But equally within palliative care themselves there is the reality that just as people live in complicated ways, they die in complicated ways.
Paul Russell: Oh indeed.
Andrew Denton: And it is simply not possible to manage all peoples’ deaths in a way which everybody would like, and it is that small group – and it is always a small group – that avail themselves of these laws, that small group who these laws are designed to help. What I see is there is a compassionate and rational way to do this.
Paul Russell: I see that absolutely we should be compassionate. I think we can do much better. There are some people for whom the slightest bit of pain is difficult; there are some who can manage amazing amounts. I've seen that variation. So we are in many respects talking about a subjective thing. We are in terms of the law anyway. We are talking about unbearable suffering. That is totally subjective. But I just don't see how a blanket law that puts other people at risk can be justified by that. I think what that demands of us – we can't just say, “Oh well we feel really sorry for that little group but we need to draw this line”. We can't do that. It can never be that. But I think we do actively cause ourselves a problem when we identify that problem and then jump to this solution, because I think there are other solutions. I am certain there are other solutions.
Andrew Denton: Whereas I guess I would put it the other way, which is I think it is demonstrable you can create a system which gives sufficient protection to those you are worried about. That to me is a far more moral thing to do than to say, “No, it is too hard, it can't be done,” and to turn your back on the people we know are suffering in horrible ways in our country every week.
Paul Russell: Yeah, well you have just made the juxtaposition with something I fundamentally don’t agree with anyway, and that is just leaving them there and saying we can't do anything. No!
Andrew Denton: But it's not that people don't want to do anything. As we have just agreed, there is a point at which medical science, there are groups of people – it is not one particular disease, although if you were to name one, where they all say, “It is beyond us,” it is motor neurone disease – but where groups of people can't be helped because people die differently.
Paul Russell: You’re saying can't be helped. I don't agree that they can't be, so that is where I think there is a divergence of paths, but look, in terms of what do we actually create when we create a law on euthanasia, my argument is this: that we create a right. It is called the right to die after all, and we are saying at the beginning we are going to have it and it is going to be for people with six months or less to live etc etc etc, and we are going to say there is the safeguards package, let's go! What happens, I believe naturally, is that people will see that for what it is. They have created a right and then they have limited it to a small group. And so what we will see is people outside of that group ultimately say, “I want my right too”. And they would have every reason to ask that. They can say, “Oh it is discriminatory. All right I have got 12 months to live but I really am suffering. I want to go now. Why are you making me wait six months?” I think that is inexorable, and whether we talk about a slippery slope, you know people will say, “Oh the law in Oregon never changed”. Well you know it was only last year that an MP there was trying to push it out to 12 months, from 6 months.
Andrew Denton: You would have to work very, very hard, Paul, to find problems with the Oregon legislation – a pitifully small number of people within very narrow definitions, and that society may look at that and go, “Yeah, we realise now this has worked and we realise there is a whole group of people who are suffering needlessly from 12 months rather than 6 months”. They may make that decision in an intelligent and informed way based on their 17 years of experience. When you talk about rights, there was a beautiful response from EricWilleke, from the Royal Dutch Medical Society, their policy officer, and I asked him about this right to die and he said, “There is no right to die. Death is just a fact at the end of life”. He said, “What there is, is a right to request help to die, but that is the only right”.
Paul Russell: Oh OK! Well that is an interesting way of putting it. Yes, but this whole question of choice comes in then, doesn't it? You know so that is the point where I have made a conscious decision to request it and then it is up to a doctor or a number of doctors to agree, and again we come back to this question about what that does, and we can reflect this back into the disability community again, when someone, effectively those doctors, is saying, “Well, OK, you have made this request, you have said your life is unbearable, you don't want to go on. We agree with you”. To me there is a little difficulty there that some people, the people in the disability community I know, recognise as being a key point that someone else is also agreeing your life is not worth living. That is different from agreeing that you’re in pain, it is different from agreeing that you are in difficulty. It’s gone beyond that. It’s saying – it’s subtly perhaps even saying, “If I was like that, I wouldn’t want to live; if I was like you, I wouldn't want to live”. And that is the kind of rhetoric that people in the disability community say they hear intrinsically on a regular basis.
Andrew Denton: As I listened to Paul returning to one of HOPE’s favourite themes – that a law which is entirely voluntary, and which can only be accessed by people with untreatable suffering, would somehow be used to persuade disabled people to their deaths – I was suddenly reminded of an old cartoon from the 60s.
Do you remember Milton the Monster? Do you remember that cartoon?
Paul Russell: Vaguely, vaguely.
Andrew Denton: It’s this ridiculous cartoon where he creates a monster, but in it he puts in – it’s like six drops of terror...
Paul Russell: Essence of terror, five drops of sinister sauce.
Andrew Denton: Five drops. And that is kind of how a lot of what I think...
Paul Russell: [Laughing] It’s all coming back to me.
Andrew Denton: Very good! that’s what a lot of the arguments I see, with respect, HOPE puts – that seems to be a lot of what it is about, which is if we just put in the drops of terror, the sinister sauce and we can really scare ourselves about it. And looking at the Schadenberg examples...
Paul Russell: Yeah, yeah, OK.
Andrew Denton: I think there is a lot of sinister sauce in there.
Paul Russell: OK, fine, well I appreciate that. It’s sort of an outsider looking in perhaps. That’s fair – I would say it is not fair comment but I’ll...
Andrew Denton: And on one level it doesn't surprise me because if I am trying to win a fight, these are probably tactics I'm going to employ.
Paul Russell: Well tactics, tactics, talking points – we all do it. Everybody who is pushing an issue or defending against an issue does exactly that. That is part of, I suppose, the game of it. Because it is a moral and ethical thing and because it is for me [INDISTINCT] justice, sometimes it touches deeper places. And sometimes it is about winning, sometimes it is.
[MILTON THE MONSTER OPENING]
[NARRATOR]: On top of old Horror Hill in a secret laboratory, Professor Weirdo and Count Kook were in their monstrous glory.
[Professor Weirdo sings]: Six drops of the essence of terror, Five drops of sinister sauce….
Andrew Denton: I’m indebted to Paul and the speakers at the HOPE convention for their invitation. It was their warnings about the many failings, even crimes, to be found in Belgium, the Netherlands, and Oregon that guided my inquiries. I used their accusations as my framework for questioning how these laws work overseas and, repeatedly, I found those accusations wanting.
It’s worth noting that, at the time of recording this podcast, four months after my conversation with Paul, Alex Schadenberg’s book was still for sale through the HOPE website.
[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.
In our final episode, I’m going to lay out what I think a law for assisted dying in Australia should look like.
And we’ll hear from the one group of medical professionals who officially support such a law – those who see the suffering of patients daily and up close, Australia’s nurses.
Episode 17 – Why do I have to go through Hell to get to Heaven?
[PRAYER BELL CHIMES]
[ETHEREAL FEMALE VOICE]: There is no death. There is only me, me, me who is dying.
Bob Hawke: I think it is absurd that we should say that it is illegal that a person who is suffering terribly and is in an irremediable condition should be forced to continue to suffer. It doesn't meet any requirements of morality or good sense.
Andrew Denton: This is Australia’s former Prime Minister Bob Hawke. When he says …
Bob Hawk: It is absurd that euthanasia is not legal within this country.
Andrew Denton: ..he is speaking for the overwhelming majority of Australians.
By the end of 2016, over 100 million people on three continents will have access to assisted dying laws – an idea that first became reality in Australia back in 1995. But our law, brought in by the Northern Territory government, was controversially overturned by our Federal Government after just two years.
Since then, nearly 30 attempts to create a new one here have failed. But as the tide of history turns in favour of assisted dying, how much longer can our politicians continue to ignore the call for change?
Andrew Denton: My name is Andrew Denton and you’re listening to Better Off Dead. Since I started working on this podcast over a year ago I’ve spent hundreds of hours talking – and listening – to people with deeply passionate, and often divergent, views about assisted dying.
Three of the people I’ve spent time with – Albert, Liz and Ray – have themselves died, each differently, only one of them as they had hoped.
If there is one, unassailable, truth I’ve gleaned from it all, it’s this: Death is complicated. People sometimes die in ways no-one could anticipate – beyond, even, the help of dedicated doctors and nurses.
In this final episode I’m going to tell you what I think a law for assisted dying in Australia should look like.
But first, let’s hear from those who – other than their patients – would be most affected by that law, doctors.
First up question – who are the worst kind of patients?
Cathy: The “heart sink patients” we call them in the trade.
Vic: The heart-sink patients.
Andrew Denton: Which ones?
Cathy: Heart sink. When you see them in the waiting room, your heart sinks.
Andrew Denton: To discuss assisted dying and euthanasia I invited five doctors – four GPs and a specialist – to dinner. Their views on the subject ran the range.
Cathy: I am not really in favour of euthanasia although I am very in favour of as doctors assisting people to die with dignity.
Andrew Denton: This is Cathy, a long-time country GP, married to my old family doctor, Vic.
Vic: I'm cautiously against euthanasia.
Andrew Denton: That’s Vic. And this is their friend, Newcastle GP Andrew.
Andrew: My position is I am cautiously in favour.
Sarah: I would say I am – it's a cautious for euthanasia. And we can discuss that more, I’m sure.
Andrew Denton: No, that's all we need. Thanks, Sarah!
Sarah: Later on. [Laughing]
Andrew Denton: That’s Sarah, from rural Victoria. She’s been a GP for almost 3 years.
Andrew Denton: Good, there's a lot of caution here tonight. I think that's good.
Cathy: We're doctors.
Andrew Denton: Yeah. [Laughing]
Paul: So I guess I'm not for or against; I'm against everything. [Laughter]
Andrew Denton: Wow!
Paul: Or question everything.
Andrew Denton: And that’s Paul, physician and Professor of Medicine at Monash University in Melbourne.
Paul: I don't like the concept of euthanasia. I think it's problematic. And I am very cautious, like everyone else, about the idea of assisted dying.
Andrew Denton: I wanted to know if any of them had been asked to assist somebody to die. Here’s Vic.
Vic: Yes, yes, of course.
Andrew Denton: And here’s Andrew.
Andrew: Absolutely. I am aware of medical practitioners who hasten death to various degrees, and sometimes to a large degree and sometimes to a slight degree. It wasn't done on the sly, and it was done well, and the outcomes that I have seen were, I would say, quite satisfactory.
Andrew Denton: Is what Andrew is describing other people's experience?
Vic: Not as directly as that, no.
Andrew Denton: This is Vic.
Vic: More of a smaller-scale “This patient is very uncomfortable, death is likely to be in three or four days, I think she should have stronger pain relief now and not let her suffer longer,” etcetera – that sort of conversation.
Andrew Denton: Andrew suspects the incidence of doctors hastening patients’ deaths may be more widespread than many think.
Andrew: I think it is far, far more prevalent than we know about, basically because of the illegality of it, so it is very hard to find statistics or do surveys when you're asking people to admit to an illegal act, so you’re not going to find many figures about it.
Andrew Denton: Andrew is right. What surveys do exist; however, confirm that, even without a law, Australian doctors have been assisting people to die for years. But with no law to guide them, how do they know whether or not they’re doing the right thing? Here’s Vic again.
Vic: I guess you have your own moral standards, and that's where you make your decisions, based upon your standards, your expectations and your compassion for the person or the family suffering, so you make your decisions on that first, and the law second.
Andrew Denton: Which is great if you have a dedicated country GP like Vic. But how can you be sure your doctor is as experienced – or as principled? Paul, who doesn’t advocate a law for assisted dying, can nonetheless see the problems our current law is creating.
Paul: Where there is uncertainty in the law, where people are not certain that they would be protected, even when they are acting in accordance with accepted practice, then there are real risks that they will do things surreptitiously, and we have got no idea of the scale, we have got no idea of the detail. That's why it is important to change the law so that the people who are carrying out these acts are accountable.
Andrew Denton: Andrew agrees there is a problem.
Andrew: The fact that it's done by relatives or friends or people themselves trying to commit suicide in messy, ugly ways or physicians or GPs are doing it or surgeons are doing it, you know, without protocols or guidelines I think that's all very messy, and I think that's quite unacceptable.
Paul: It's messy and it's dangerous and...
Andrew: And it's dangerous and I think...
Cathy: Professionally it'd be much nicer to have some firm ground.
Andrew: We need to have something better than that.
Cathy: Not being pro-euthanasia, but having legislation that makes it clearer would certainly I think ease a lot of doctors' minds about what they can and can't do with their patients.
Andrew Denton: In spite of that, Cathy is uneasy about the thought of legalised assisted dying.
Cathy: I am sure most people around this table would not approve of capital punishment – “Ooh, we don't want governments to kill people”, and yet we are talking about giving them the legislative power to kill people.
Andrew Denton: Vic has different reservations.
Vic: At this stage it's their choice to kill themselves because they are in pain or they have terminal cancer. What if they choose to kill themselves because they are a nuisance to the family or they are holding up the inheritance or they feel like they're a waste of space because they are really depressed or whatever, and they get through all the medical systems and they are allowed to do that. The broadening of the definition really does worry me.
Andrew Denton: This is not an easy question for any doctor. And when Andrew throws up a hypothetical where he gets the incurable disease ALS it becomes even more complicated.
Andrew: If I develop that, I'd like to be able to ask somebody that I trust immensely, such as Victor, to assist me before I get to the stage where I'm choking or starving, where I've decided by some signal that I can give him that, you know, I want to finish it. And I feel as though I should be entitled to be able to make that decision without someone coming and saying, “Yes but we can do this, this and this”.
Andrew Denton: Do you think what Andrew's saying is reasonable?
Vic: Yes, yes, I do. Absolutely, and it is the dichotomy that I have to deal with in that I would be sorely tempted to help him out as a good friend – law or no law. And it would be better to have protection of the law.
Andrew Denton: Sarah, as you've been listening to this, what are you thinking?
Vic: Would you give him the green dream?
Sarah: I would find it difficult to come up with a good reason why I shouldn't help do something to help in that situation. I think one of the things I feel a little bit uncomfortable with is the power that the medical profession potentially holds in this discussion – I'll relieve your suffering, yet it's the patient who defines that suffering but it's us who decides how that suffering can be relieved and to what extent we can provide that.
Paul: It's not the job of the doctor to exercise power
Andrew Denton: This is Paul.
Paul: It's a risk and it's often an error that the doctors are guilty of, but again that's part of the appropriate ethical training of the medical profession to avoid that error.
Andrew Denton: Andrew, for you it seems to me to be very much about your rights as a patient.
Andrew: Absolutely. I'd like to have that right to make that decision and not to have someone exercise that power over me and that feels quite important to me. I may never exercise that option but I’d like to have the right to decide that. I'd like to have it for my loved ones, for my family, even for the wider community.
Andrew Denton: Surveys of Australian doctors down the years show that support for assisted dying runs at over 50%. However many of their representative bodies – the AMA, the Royal Australian College Of Physicians and Palliative Care Australia – remain steadfastly against.
But there is one national medical body that does officially support a law for assisted dying. Tellingly, they’re the ones who see the suffering of patients every day and up close: They’re the nurses.
Coral Levett: In our recently reviewed policy we support the change to legislation that would facilitate assisted dying.
Andrew Denton: Coral Levett is the former president of the Australian Nursing Midwifery Federation. For a decade and a half she worked in a coronary care unit where she saw hundreds of people die each year.
Coral Levett: People’s bodies at end of life do amazing things. Bones break. Organs fail. Even our neural receptors, our pain receptors are hypersensitive, so we may have apparently little reason for pain but yet feel it and experience it, and often we see at end of life no amount of pain relief can relieve that, and people will ask the question. They ask you to help them end it, to finish it, to kill them. They will use all sorts of language but there is no mistake about it. People know when they’ve had enough. It can be very difficult for the nursing staff around them to, I guess, experience that imploring and begging to assist them to end their suffering when it happens.
Andrew Denton: Are you aware of occasions where patients have been knowingly assisted to die within the system?
Coral Levett: Yes, I think so, but very carefully. It’s a very fine line and not a measurable one about how much is enough to relieve pain and how much might be enough to cease breathing. That is different for every single person, and it’s not black and white. It’s so grey it’s hard to tell. So morphine or other opiates are administered and it would be very hard to know then whether life was shortened as a result.
Andrew Denton: Dying is complicated. Sometimes the pain relief itself can become a problem.
Coral Levett: I have seen quite a number of people who did not respond to opiates or morphine. Indeed morphine and opiates can make some people worse. It can increase their suffering. Although that is not a lot of people, that is an awful thing to see when you think you are giving somebody pain relief and you make them worse.
Andrew Denton: For nurses like Coral, faced daily with suffering, the expression “death with dignity” carries a visceral meaning.
Coral Levett: Many of the deaths I’ve seen are extremely undignified. I can assure you starving to death or dying of dehydration is not dignified. It’s just not. And the levels of pain – people can scream for the last hours of their death in agony despite very high doses of opiates, morphine and other forms of relief. It’s less than dignified I think when you’re in a public place surrounded by people that you may not know very well, when other people can hear you, hear your trauma, hear your suffering, and you’re generally in a strange environment. To me that’s not dignified.
Andrew Denton: That some patients do die screaming in pain is a confronting thought. For some, it is also problematic. Here is Dr Karen Hitchcock, an outspoken opponent of assisted dying, on ABC TV’s Australian Story.
Karen Hitchcock: Physical pain towards the end of life is treatable. We have very, very powerful drugs available to us. I have never in the 13 years that I’ve been practising in big hospitals had a patient die screaming and in pain: never. I’ve never had a single patient beg me for death towards the end of their life.
Heather Bell: I mean I’ve never seen a house on fire but I know that it happens.
Andrew Denton: Heather Bell is a 21-year-old medical student with a fiercely different perspective to Dr Hitchcock’s.
Heather Bell: She’s a singular doctor in a very large community of doctors in a world full of patients. That she’s never seen it I’m glad that she hasn’t had that experience, but it doesn’t speak to the rest of us.
Andrew Denton: Heather’s view about treatable pain at the end of life was shaped by the death of her mother Allison.
Heather Bell: She was a very intelligent woman and because she was diagnosed with a neurodegenerative illness and it was terminal, she knew that it would be very slow and very undignified and that it would sort of reduce her to a bit of a shell of who she was, and she struggled very much with that.
Andrew Denton: Heather was just 11 when Allison was diagnosed. She watched as, bit by bit the disease ate her mum away, attacking her body, her memory and, finally, her emotional core.
Heather Bell: She said multiple times that she wanted to die. She asked my father. He was a medical professional. He absolutely couldn’t and told her that. She asked me – I spoke to my father about it – and he said, “You can’t help, Heather. You’ll be on a murder charge. You’ll never be a doctor”. And I knew I couldn’t. She told the nurses. They called me and told me regularly that that was the state she was in. She voiced it frequently and often. And when I couldn’t do it because of the criminal implications and she couldn’t do it because of the emotional implications it would have on me, no-one could do it because of the euthanasia laws or lack thereof. So we were just boxed in on all sides. But it was something that no-one had any illusions about whether or not she wanted it. She was very clear.
Andrew Denton: Clear and rational?
Heather Bell: Yes. She said these things about euthanasia from about the time I was 13, so it was a long time ago.
Andrew Denton: By the time Heather was 20, Allison’s condition had deteriorated to the point where she was moved to a nursing home for full-time care. Then, one day, Heather got a call – her mum had developed a fever.
Heather Bell: So I went there and my mother in the space of two weeks had become completely bedbound. She couldn’t eat solid foods at all. She was struggling to speak and she was being put on a lot of painkillers. So for the next seven days I slept on the floor next to her bed. She became in steadily increasing more pain and came to the point where we needed to put in a butterfly clip for morphine, and then of course those morphine injections became more and more frequent until in the last few days I had an alarm set on my phone every 2 hours that was titled “morphine”, and I would wake up every two hours to my mother’s screaming in pain. And we would rush around finding the one registered nurse in that whole building. She would have to come and bring the morphine and I would spend 15, 20 minutes trying to soothe my mother, stop her screaming, stop her crying, stop her writhing around while the morphine kicked in. And then she would sort of go slack-jawed for another 2 hours, moan a lot in her sleep. So I’m not under any delusion that she wasn’t in pain during her sleep; she certainly was. And then sort of just lie there for the next 2 hours and wait for it to start again.
Andrew Denton: And this went on for how long?
Heather Bell: That was about seven days that this whole injections of morphine thing went on.
Andrew Denton: Do you think there’s any way in that last week where your mother could’ve been helped and not had any pain?
Heather Bell: I can absolutely tell you – my father’s a doctor; I’m a medical student – we were surrounded by the absolute best doctors, the best nurses. No-one wanted her to be in pain. If there was anything that could have in this world been done to alleviate her pain even the tiniest bit more, it would have been done.
Andrew Denton: If it could’ve been accessed, do you believe that Allison would’ve wanted help to die at that point?
Heather Bell: Absolutely.
Andrew Denton: For Heather, the experience of her mother’s death has left deep scars.
Heather Bell: I was standing there watching my mother take her last breaths and groaning even as she did so, and I watched the grey creep up her fingers until her entire body went grey. And then I came back half an hour later after they’d removed the catheters and everything was bleeding and there was conjunctivitis – just layers of pus – around her eyes because her body was just so susceptible to infection and nothing could be done. She couldn’t close her eyes for the last week. They would never close even when she was sleeping. You can’t put into words the toll that it takes on someone to see anyone in that state, let alone, you know, the person who brought you into the world.
Andrew Denton: To whose benefit is someone like Allison kept alive in that situation?
Heather Bell: It’s not to anyone’s frigging benefit. No-one benefited. The nurses were horrified, and they obviously will go through it again and again. I certainly didn’t benefit. My mum didn’t benefit. I can’t think of a single person who got anything out of that except for maybe the proverbial man on the moon who got a kick out of the fact that my mother didn’t take her own life and so she’s not a sinner, I suppose. I mean is that who we’re running this little show for?
Andrew Denton: Can all pain at the end of life be dealt with by drugs? No. This was confirmed, when I spoke to the director of the Sacred Heart Palliative Care unit at St Vincent’s hospital in Sydney, Professor Richard Chye.
Richard Chye: I’m not going to say I'm going to control everybody's physical pain – no, I'm not going to be able to do that, because there will always be some patients who will have pain that is not controlled.
Andrew Denton: Across the board, palliative care physicians I spoke to acknowledged that the most difficult symptoms to treat are what they call “existential”. Here, again, is Professor Chye.
Richard Chye : It’s distress, a patient's distress about their condition, their illness, what it is doing to them. That, I think, is the most difficult symptom to try and get over. Because it is not a physical symptom like pain or nausea, vomiting; it is a mental anguish.
Andrew Denton: To think of this issue only in terms of physical pain is to overlook what lies at the heart of it, which is not pain, but suffering.
Often the worst of what is being endured by someone dying is a mixture of many things – loss of dignity, loss of independence, or loss of control – as well as physical pain. Suffering is the key. In the case of someone like Heather’s mum, Allison, it can last for many years and cannot be controlled by drugs, however powerful.
Many Australian doctors would know this intimately. Yet, as a profession, they have remained mostly silent on the question of assisted dying.
One thing that Belgium, the Netherlands and Oregon have in common is that their laws came from the same place – an honest acknowledgement by the medical profession that doctors were already making decisions to end patients’ lives and that maybe it was better to regulate this, so that patients were better protected from malpractice and doctors from prosecution.
In each place, the medical profession played a key role in making these laws happen. In the Netherlands, the guidelines for their euthanasia laws came from the Royal Dutch Medical Society. In Belgium, the drive for regulation came from palliative care. In Oregon, after open debate, doctors voted to take a neutral position on the issue. As Leigh Dolin, former president of the Oregon Medical Association, told me:
Leigh Dolin: 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: As in Oregon, many doctors here have strong moral objections to helping a patient die and I totally support their right to hold that view. But there are other doctors who see assisted dying as a profound expression of their duty of care. Their questions about how laws might work deserve to be honestly and openly discussed.
As a representative of the next generation of doctors, Heather Bell would like to see that happen. I asked her how she thought other doctors could be encouraged to join the conversation.
Heather Bell: I think if a medical student is going to risk coming out and saying it, then maybe they should hike up their pants and do it too. I think the ball has to start rolling with doctors. And nurses, and you know, OTs and everyone. They all see it, they are all there at the end of it, they all should get involved and speak up, and then just realise that it’s not meant as a finger to the medical board; it’s meant as helping the patients and helping the doctors do what they need to do and what they should do without fear of reprisal.
Andrew Denton: Former nurses president Coral Levett has her own thoughts about persuading doctors to engage.
Coral Levett: As a nurse how do I change a doctor’s mind on this? I nag them, I keep on at them. There are plenty of doctors that have a similar view to our position on this, so you start with them. They’ve got to grow their own. And maybe we give them an out. We make sure they realise that they don’t have to do this, convince them that this is a choice thing. It’s a matter for people to determine their own end-of-life situations, and if you don’t want to be part of that then simply don’t. Don’t. But let those that do want to be part of this progressive change for better Australia, let them participate.
Andrew Denton: In 2016 the Australian Medical Association is reviewing their policy on assisted dying. For guidance, they might like to look at the Canadian Medical Association who in 2013 decided to take a leadership role on the issue by conducting an open conversation with their members, and the public, on end-of-life care.
Like their compatriots in Oregon they discovered that Canadian doctors were divided in their views on assisted dying. Acknowledging this they took a leaf out of the Oregon Medical Association’s book by taking a vote on whether doctors should have the right to act on this question according to their conscience.
The vote was passed in favour – with 91% voting yes.
The spur for this podcast was an invitation from Michael Williams, the director of Melbourne’s Wheeler Centre, to give a speech there about assisted dying.
Now, halfway through the 17th and final episode – way more than either of us ever envisaged – I’m going to hand the interviewer’s microphone over to Michael so he can quiz me about how I see a law for assisted dying working in Australia.
Michael Williams : One of your starting points was the question: “Why can't we have a law that stops good people dying bad deaths in this country?” Are you any closer now, 17 episodes and 13 months in, to having an answer to that question? Why can't we?
Andrew Denton: There is a small but powerful conservative largely but not entirely religious minority that wield sufficient power in this country, and is sufficiently able to sow seeds of doubt amongst wavering politicians to block this wherever it is proposed. I don't think it's more complicated than that.
The thing I hadn't expected to find is that the medical profession itself, their leadership have made very little effort to genuinely explore this.
And on any other medical issue, if there was extreme concern expressed from patients about “We really would like some help here,” you would expect doctors to step forward, but on this, as far as I can see, the leadership of medical bodies have not stepped forward; in fact they've closed the door.
Michael Williams : How did the experience of going to other countries and seeing their laws change the way you were framing this debate and this investigation?
Andrew Denton: I found the experience particularly in Belgium and the Netherlands intellectually incredibly intense. These are countries that have been having this conversation, ah both in theoretical and practical terms for many, many years. So all those questions people throw up about the elderly and disabled people, about people being coerced, they deal with this on a daily basis and seeing the deep level of thought and care that had gone into it was very, very impressive so I came back, disappointed really at how little we know here about what happens in those countries
Michael Williams : So you've – you haven't done all this work just to come up with the diagnosis that people are dying badly. You must have a prescription. Dr Denton.
Andrew Denton: We're very lucky, I think, in Australia, in that there's over a decade of experience in Europe, there's nearly 20 years in America, of hugely well-documented systems. We can see absolutely what's happened. So we can pick what we think works, and for me, what clearly works is a combination of what happens in Oregon and what happens in Europe.
And the key thing I would take from Oregon is what's called voluntary assisted dying, whereby, should you pass the criteria which enables you to be legally assisted to die – and they're very specific criteria – then you are prescribed a medication, a drink, which only you can take should you choose to take it. That makes it the most voluntary of all possible models. There are two things at the core of these laws. One is that they're voluntary, and secondly, that you have to be a competent adult to request it.
Michael Williams : So from Oregon I would take that you have to drink it, and the only exception to that is if, like Ray in episode 12, who in the last hour of his life when he desperately wanted to take the Nembutal but couldn't swallow because of his cancer, then if that person's still competent and can request it, then the doctor could inject you. But that would be the only exception.
Michael Williams: But from your perspective, the Oregonian laws are too rigid in terms of who they're available to – is that right?
Andrew Denton: The Oregon laws are deliberately narrowly written and they apply to people who have a terminal illness with six months or less to live. Now that does deal with the majority of people these laws encompass.
But I prefer Belgium and the Netherlands, where their criteria to use these laws is “unbearable and untreatable suffering”, because as with the story of Heather Bell's mother, Allison, suffering can go on for many years. If you've got something like Motor Neurone Disease or MS – which Lawrie, who we met in episode 15 has – or if you had a stroke, you can suffer unbearably for many years. To restrict it to that six-month window excludes all those people and I think unfairly.
Michael Williams : How does your version of the laws fall back on the doctors? How do they determine this question of unbearable suffering?
Andrew Denton: Doctors are presented with these kinds of questions all the time, and they do what they're trained to do, which for a question as serious as this – a request for help to die – is a long series of consultations. They go through not just the patient's symptoms but the patient's history, their biography.
And they work with the patient to try and determine if their claim for “unbearable” matches a doctor's understanding of what unbearable may be. But remember it's not just unbearable, it's untreatable. So under the laws I'm proposing, a doctor has to go through with the patient all other reasonable treatment options, including palliative care.
Um, and if all those are exhausted, then and only then if they agree that it's unbearable and if it is indeed untreatable, then they, ah, could be legally eligible to be assisted to die. Um,
It surprises me when I hear doctors in Australia seem to imply that doctors here couldn't possibly do that. We are entrusting them to life and death decisions all the time. So where do we draw the line on that? Should we be withdrawing them from our hospitals because we can't trust them with other life and death decisions? It's a nonsense, but it's one of those debating points which sound plausible on the surface of it.
Michael Williams : Do you see the voluntary nature of this thing being an opt-in thing for doctors and an opt-out for those who don't want to be part of it?
Andrew Denton: Absolutely essential. One of the cores of this is that any doctor or nurse that doesn't wish to participate can opt out. And indeed, overseas there were some doctors and nurses that chose not to participate, but who eventually came around to thinking, “I see this is a good and safe thing to do”. And there are others who did participate, and then decided, “That's too emotionally hard for me. I don't want to do it again”. And that's as it should be. Voluntariness is at the core of this for everybody concerned.
Michael Williams : You've said the people who want to tear down this argument again and again point to the vulnerable in society, the way in which they will be either directly or implicitly coerced into seeing themselves as a burden and opting out if you like. Do you think there are sufficient checks and balances in your law to prevent that?
Andrew Denton: Everything I am proposing is based on models that have worked very successfully overseas. The safeguards are these. First of all, you have to apply, not just to one but two doctors, independent of each other. One of whom, under my proposal, should be a specialist in what you're presenting with. So if it's cancer, that's an oncologist. You have to convince both of them independently of each other that your suffering is unbearable and untreatable.
As I said before, you have to go through all other possible treatment options, including palliative care. If they believe that there is a psychiatric driver to this, then, by law, a psychiatrist has to be brought into the mix and they too have to agree that what you are presenting is unbearable and untreatable. And that's why when I hear this scenario – that some poor granny whose kids want the inheritance are going to encourage her to go and apply for euthanasia – it's almost impossible for Granny to get through the gates of this because feeling depressed or coerced or vulnerable – all of which, I freely acknowledge, may be valid feelings and, you know, elder abuse is a real issue in Australia – but to present to two doctors independent of each other who are looking for something that’s unbearable and untreatable, as a depressed, coerced, vulnerable older citizen, you're not going to meet their criteria.
And what's the jeopardy in that for the doctors? To apply for this law, a person has to do it both in writing and orally and 15 days later they have to reapply orally again. So a case note exists from the patient explaining why they are applying. The doctors have to keep case notes, which by law they have to submit to a committee of review, a committee of their peers. It also goes to the Coroner. The committee of peers, if they have any questions about how this case was conducted by the two independent doctors, who could be measured against each other, they can call either or both of those doctors into question. As can the Coroner. If there are genuine concerns about this, it can be sent to a prosecutor.
So there is great risk for a doctor in not following these laws. They can be struck off. They can be sent to jail. What, a lot of people don't think about when they say “Oh are these laws safe?” is that we're in a country right now where assisted dying is happening. We know it's happening. There are surveys down the years which support that view. Doctors said it to me throughout the series. But we have no laws at all. We have no idea what doctors are actually doing in this country when they hasten somebody’s death.
Michael Williams : There's a lot of red tape in your version of law. Does it become too hard for people to get the care that they need?
Andrew Denton: There are complaints about that overseas. You know, the peak disability group in the Netherlands who I spoke to actually said that that was the number one complaint from their members. These laws were harder to access than they wished them to be, quite the opposite of what's suggested here – that the disabled are being coerced.
There would be many – Philip Nitschke is one – who would argue that yes, this is much too hard and doctors shouldn't have this much power in the equation. But the questions raised about how safe these laws are and the need to protect the vulnerable are very genuine questions. They are the right questions. And in the end, because we're talking about literally life and death, society must take this very seriously. And I believe that the way they have dealt with this in Europe and in America, by and large, helps those people that most need to be helped. But remember one of the truths about these laws is that the number of people that use them are tiny.
You've got to be in an extreme condition to seek somebody's help to die. So it's always going to be a small number of people. And as that Oregon doctor Peter Reagan put it beautifully, he said, you know, referring to the tiny percentage of people who use this law in Oregon, which is less than half of one percent: never changed, in 17 years and he said, “I just can't imagine why anyone would think there'd be an avalanche of people wanting to use these laws”.
Turns out that people just don't want to die, and I'm constantly amazed at the way other human beings are so quick to judge that people who aren't them would just give up on life. It's an incredible assumption and a deeply offensive assumption to those who are going through this level of suffering. People cling to life. Just as you or I would cling to life.
[FRAGMENTS OF 1996 NEWS STORY ABOUT NORTHERN TERRITORY EUTHANASIA LEGISLATION]
Andrew Denton: The 1995 Northern Territory law giving terminally ill people the right to ask for help to die lasted less than two years before it was controversially overturned by the Federal Government. Only four people had been able to use it.
Since then, despite overwhelming public support for such a law, none of the 27 attempts to pass a new one have succeeded. In fact, only one has got to second reading – which means it's never been seriously discussed, much less a workable law considered.
There is no other social issue on which Australian voters have been so comprehensively abandoned by their elected representatives as this. Like many, Marshall Perron, former Chief Minister of the Northern Territory and the architect of that 1995 law, thinks it’s inexcusable.
Marshall Perron: We see regularly in Australia examples of people who are appealing to politicians to legislate on this subject, who are living horrific lives and face an awful demise and are begging for someone to help, and it all seems to fall on deaf ears all because the kids might put Granny down if the legislation is in place. I mean I still am a little bit staggered and disappointed that politicians haven't really examined this issue fairly closely on behalf of their constituents and taken some action.
Andrew Denton: It is a disgust shared by one of Australia’s best-known political figures.
Bob Hawke : I think it is absurd that euthanasia is not legal within this country.
Andrew Denton: This is Australia’s former Prime Minister Bob Hawke.
Bob Hawk: I think it is absurd that we should say that it is illegal that a person who is suffering terribly and is in an irremediable condition should be forced to continue to suffer. It doesn't meet any requirements of morality or good sense.
Andrew Denton: The bottom line sense I get of those who suggest we can't do this in Australia is they don't trust our medical and legal system to be able to create something that is safe and workable. Does that surprise you?
Bob Hawk: Yeah, it does surprise me, and I don't think there is any ground for that apprehension.
Andrew Denton: The injection of fear into this debate is very potent. How influential is that in terms of the way politicians think about these issues?
Bob Hawk: Well politicians are by and large not the bravest of creatures. They have a pre-eminent interest in retaining the seat they hold in Parliament, whatever Parliament it is, and if they detect that there is no support and a degree of antagonism against this particular proposal, you won't detect much courage there.
Andrew Denton: When I wrote to you I said that to the best of my knowledge very few public figures of any stature in this country have come forward to say that we think these laws should exist. Does that disappoint you?
Bob Hawk: Ah yes, I think it is a bit disappointing, and I'm more than happy for my name to be associated with a clear statement of belief that the time has come when we in Australia should be getting legislation on our books which makes euthanasia not illegal.
Andrew Denton: Do you think about your end of life options?
Bob Hawk: No, I just have a sort of understanding with Blanche that something I could not stand would be to lose my marbles. And if that were in fact to happen, that something is done about it.
Andrew Denton : [Laughing] I hate to think what “something is done” means.
Bob Hawk: Well I don't expect it to be a pillow pressed exuberantly over my unwilling nose [Laughing], but I'm sure she could organise something with the family doctor.
Andrew Denton: As I write, it is March 2016. Right now, assisted dying legislation is before the South Australian parliament for the 14th time. A bill to restore rights to the Northern Territory and the ACT – including, should they choose, the right to legislate assisted dying – is being debated in Federal Parliament. Later this year, proposed legislation will again be put before the Victorian and Tasmanian Parliaments.
The old arguments that have held such sway over our politicians – about the elderly and the vulnerable being unsafe under these laws – no longer hold.
Over a decade of experience in Europe, and nearly 20 years in America, has shown us that the safeguards do work, that good laws can be created to help the few and protect the many.
The radical idea which started in the Northern Territory in 1995 – that you could write a law to assist those in unbearable pain to die – is now embraced in The Netherlands, Belgium, Luxembourg, Columbia and much of the west coast of the USA.
In coming months, California, America’s most populous state, and Canada will also embrace it when they introduce their laws for assisted dying.
Twenty years ago, four dying people in the Northern Territory were able to access a law to help them die more mercifully – before the law itself was extinguished. By the end of 2016, over 100 million people on three continents will be able to access such laws.
The trajectory of this debate is clear. The question is: Will our politicians finally engage with it?
In encouraging his fellow parliamentarians to do so, South Australian Liberal MP Duncan McFetridge urged them not to reject the assisted dying legislation now before them based on “furphies”.
Don’t be a coward,” he said. “If you have problems with this legislation, take it to the committee stage [where legislation is debated in detail] ..so we can answer your questions. Have the courage to do what 80% of South Australians want – they want a choice”.
Andrew Denton: It’s been intriguing, over this last year, to observe the tactics of those who oppose assisted dying. The strategy I’d heard laid out – at the anti-euthanasia convention where my journey began – by former New Hampshire legislator Nancy Elliott, was clearly evident.
Nancy Elliott: W e have to be flexible. You know, when one of our arguments dies, we need to be ready to pick up another one. When you have lots of arguments, if one argument gets blown out of the water, you still have more, and each argument will reach somebody else.
You only have to convince legislators that they don't want this bill. I mean you don't have to win their hearts and minds; all you have to do is get them to say, ‘Not this bill’, and then you have got your win.
Andrew Denton: Just as Nancy advised, the arguments I heard against were many and varied – suicide contagion, babies being killed by the score, palliative care degraded, trust in doctors destroyed, human lives devalued, patients killed without their consent, the elderly and disabled coerced to die.
Yet, when looked at closely, these arguments were not supported by the facts. Often, they were directly contradicted by them.
So what is the latest argument they are picking up? That it’s things we can’t even see or hear which make these laws bad.
Here is Dr Hitchcock raising concerns about “unspoken coercion”.
Karen Hitchcock, Q&A: T here are people in our society who rely on the care of others and I think that those people are vulnerable to unspoken coercion.
Andrew Denton: And here is leading anti-euthanasia campaigner Paul Russell also warning about things that can’t be backed up with evidence.
Paul Russell: I think what concerns me most is the stuff that you almost can't prove, you know – how societies change, how people's views of other people change.
Andrew Denton: Or this, from Bob McCoskrie, National Director of Family First NZ, in his submission to that country’s parliamentary inquiry into assisted dying:
“Perhaps the most ominous change is one that cannot be proved. There will be an irreversible alteration to the way society and medical professionals view the demise of the elderly, the disabled … and the terminally ill”.
Opponents are fond of saying that the burden of proof is on those who advocate these laws to show that they are safe. Yet in the face of volumes of heavily-scrutinised evidence from overseas which does exactly that, they want us to accept, instead, their counter-argument of “stuff that cannot be proved”.
Unable to explain away the overwhelming support for these laws in places where they exist, this is what their case against boils down to – an unprovable claim, a hypothetical of harm, a drumbeat of fear, anything to convince a politician “not this bill”.
Andrew Denton: If you’ve been listening to this podcast since the start – and, boy, do I respect your commitment – you might remember Liz, from way back in episode 2.
Liz Le Noble: 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: The Nembutal Liz bought and tested sat unused in her home when she died earlier this year, sedated and in palliative care. In the end, for reasons only she could know, Liz chose not to use it. But the relief of knowing it was there meant a great deal to her.
The point of changing these laws is not about forcing an outcome on anyone. It's about giving them a choice – a level of control – when illness and suffering is robbing them of other choices and control. It's about the comfort of having options.
And it’s about respecting other people’s choices too. Those who disagree are free to live, and die, as they choose. Doctors and nurses who feel the same way have every right not to participate.
A law for assisted dying is not about a right to die – as one Dutch doctor put it to me “death is not a right; death is a fact at the end of life” – but, instead, a right to ask for help should the suffering become unbearable and untreatable.
A basic human right not to be subjected to torture. Not an act of abandonment or murder. Rather, an act of compassion and love for those most desperately in need.
I didn’t know it at the time but this podcast began almost 20 years ago when I watched my own father die slowly and painfully.
One of the things Dad always used to tell my sisters and I when we were growing up was that “There is nothing more powerful than an idea whose time has come”.
The time for this idea in Australia has well and truly come. If you think the same, don’t keep it to yourself – and don’t leave it to others. Tell your doctor. Tell your local member, state and federal, and encourage others to do the same.
Change happens when we make it happen. If you want to make a difference on this, you need to make a noise.
[SONG ‘FORTY EIGHT ANGELS’ BY PAUL KELLY]