On August 10, Go Gentle Australia co-director Andrew Denton addressed the National Press Club of Australia on the topic The Damage Done: The Price Our Community Pays Without A Law For Assisted Dying.
There he lit a fire, and officially launched our campaign for an assisted dying law in Australia with the release of our book, 'The Damage Done', which you can download here.
You can see the address on the ABC National Press Club website here.
You may download the full transcript as a PDF here.
The Damage Done: The Price Our Community Pays Without A Law For Assisted Dying
I’ve come here today to try and light a fire.
Let me strike the first spark by telling you the story of 90-year-old South Australian Eileen Dawe. As she was dying of cancer last year, Eileen kept a diary. Despite her clearly-stated wish to die she was forced to endure 17 painful weeks until the disease finally took her. Hoping to hasten nature’s course she began to starve herself to death. In her diary she wrote “My country’s laws decree ‘Death by a thousand cuts for me’”.
If you've ever dieted for a week you know how unpleasant that is. Imagine a month of it. Or more. Weaker and weaker, with all the unpleasantness of starvation PLUS the symptoms of her cancer. Weaker still, and still not dead.
How can our laws allow such a thing? Not just allow but insist on it. And why – despite polls which consistently show Australians overwhelmingly support a law that would have helped Eileen to die humanely - has no Australian parliament responded to the public will?
I’m going to come back to that, but first a quick rundown of how I get to be standing in front of you today. The two-times failed Gold Logie nominee now deeply engaged in what is literally a life and death issue.
Watching my father, Kit, die remains the most profoundly shocking experience of my life.
He was 67, and though clearly dying of heart failure, and obviously in great pain, dad was assisted to die in the only way that Australia’s law then (and now) would allow: He was given ever-increasing doses of sedatives, to settle the pain.
When your heart fails, fluid backs up in your lungs and you spend all day, every day, fighting for breath. Its like waterboarding - trying to suck air through a damp mask, drowning and being revived again. Of course Morphine couldn't relieve his distress. Not his and not ours. He never got a high enough dose to actually kill him. The images of those final days will never be erased.
That was 19 years ago. In the years since, whenever I’ve talked about it, I’ve been struck by how many respond with similar stories about people they love dying slowly, in pain, and, and sometimes terror, while being denied proper medical help.
So 18 months ago I set out to discover why good people are being forced to die bad deaths.
I travelled to places where laws to assist dying have been operating successfully for many years… to Belgium, The Netherlands and Oregon.
I discovered that, contrary to what I had heard in Australia, it IS possible to construct laws with strong safeguards and protections. I discovered that after up to 20 years living with these laws, they have strong and widespread public support; that the fears have not been realised. There is no slippery slope.
I discovered families profoundly grateful that, thanks to these laws, people they loved had been offered a choice, and the reassurance of control, over what would, otherwise, have been cruel, lingering deaths.
Perhaps most significantly of all, I discovered a golden rule that applies the world over: And that is most people do not want to die. They will do just about anything to stay alive, to be with family, to celebrate a grandchild’s birthday, to wake up and marvel at the beauty of a sunrise.
Take Oregon, where the number of people legally helped to end their life is less than 0.5% of all deaths annually. By law they must be dying of a terminal illness to be prescribed life-ending medicine. Yet nearly 40% of them choose, in the end, not to take it.
People give up only because the suffering or the daily loss of dignity they experience every day means they that for them there is, indeed, something worse than death.
I documented this journey of discovery in a podcast series called Better Off Dead -- 17 episodes in all, culminating in a call from Bob Hawke for Australia to introduce assisted dying laws.
It’s still available freely online but what’s changed since I launched the series earlier this year is that both Canada and California have enacted their own voluntary assisted dying laws. Meaning there are now over 100 million people in the world who have full choice about what happens to them at the end of their life.
None of them Australians.
It’s not that we lack the desire: polls show support for voluntary euthanasia in this country consistently runs at over 70 pc. It’s not that we lack the wit - I mean we’ve done it before. It was Australia which enacted the world’s first assisted dying law.
Many of you will remember - the Northern Territory, 20 years ago, and the first man to use it was a 66-year old Darwin carpenter called Bob Dent, dying from prostate cancer. Both his testicles had been removed, he’d lost 25 kilograms, wore a catheter and leg bag and, as he said himself, couldn’t get a hug in case his ribs cracked.
Under that law, Bob and 3 others got the release they so desperately wanted – but in less than a year, the Howard government overturned not the law itself, but the law which permitted Territories to make such laws. Just to make sure.
“One of the most effective political campaigns in recent history” is how Fairfax’s Michael Gordon described it at the time. “It is also the story of a network - all the principals are Catholics - its influential connections, its single-mindedness and the tactics it employed”
A network which kept its profile so low …”as to be almost subterranean”. This, Gordon wrote, was “an integral component of the strategy”
We’ll come back to those subterranean forces. As I have discovered – they are still with us, working against the clear popular will for assisted dying laws. Using the old, crude but sadly effective weapons of denial and deception.
But first, let’s look at the consequence of their work. Let’s face the truth about what’s actually happening across our country in the absence of such laws. The Damage Done – as we’ve titled this book – describes the landscape with shocking clarity.
The daughter whose dying mother beseeches her to end the pain … who actually picks up the pillow, and hovers above that loved face .. but reels away, unable to go through with it. We can name that daughter: she was TV journalist Tracy Spicer.
The grandfather so wracked by late-stage cancer he writes a farewell message on his “TO DO TODAY” pad before hanging himself on the clothes line behind the house. His name’s Ken. Here’s the note. The son who found his body has Downs Syndrome.
A woman dying of Motor Neurone Disease, desperate for release but too ill to fly to a jurisdiction with kinder laws “It’s so much worse than I imagined”, she scrawls on a blackboard, and asks her friend Elisabeth to make sure these words are seen. Her own contribution to law reform.
Just 3 of the 72 testimonies within. Written by the dying and their loved ones; detailing trauma and suffering on a staggering scale.
These testimonies come from people aged 14 to 100 and from all walks of life. They represent almost every Australian State and Territory. They are blue collar, white collar, devoutly religious, avowedly not. The diseases they have faced are mostly cancer, but also MS, Motor Neurone Disease and other medical horrors.
What brings them together is the cruel way they all suffered – or suffer still, with descriptions such as “akin to torture” and “like a horror movie”. What strikes the reader are the repeated expressions from those left behind of shock, anger, and helplessness, sometimes reaching back decades.
Perhaps bravest of all are the testimonies from doctors and nurses, some of whom openly admit to committing the crime of assisting a patient to die. The trauma many of them have had to deal with in the face of their patients’ suffering is palpable. The guilt others still feel because the law forbade them from helping, just as keen.
Had the abuses, cruelty, and harm inflicted by our laws, and so vividly captured in this book, happened within one institution, our politicians would surely have acted on them long ago.
But because they have happened in many places – palliative care wards, nursing homes, general hospitals, people’s houses – and because each has been a private tragedy, they have been invisible. Ignorable. Deniable.
What is undeniable is that desperate people take desperate measures. And here we turn away from anecdote and private pain to the formal findings of the cross-party Victorian Parliamentary Inquiry into End of Life Choices, the most extensive inquiry of its kind ever held in Australia, which reported in June this year. And which mirrored the anguished testimonies listed here.
It found repeated examples of inadequate pain relief and of deep suffering beyond the reach, even, of palliative care. It found doctors breaking the law and relatives being put on trial to relieve the torment of their patients and loved ones. Most shocking was the testimony of Victorian Coroner, John Olle, who detailed the horrific ways in which desperately ill Victorians were – are - taking their own lives to end their suffering.
His evidence rocked the Committee, and was so distressing the Coroner had to collect himself three times while speaking – including the case of a 90-year-old man with cancer who killed himself by repeatedly firing a nail gun into his head and chest. Coroner Olle went out of his way to stress that these were people without a history of mental illness, from loving families, faced with the slow, ‘irreversible decline’ of chronic disease.
He said his office saw no way of preventing these deaths, quoting directly:
“To my knowledge the people we are talking about have made an absolute clear decision. The only assistance that could be offered is to meet their wishes, not to prolong their life”
He estimated the number of elderly Victorians dying in this way - by suicide to escape the ravages of disease - at 1 a week.
Faced with such evidence, the Committee found that maintaining the status quo was unacceptable and this was a clear case for law reform.
Its recommendation, by a majority of 6-2, was that voluntary assisted dying - with strong safeguards - be introduced as another option at the end of life.
How, you might ask, can all this evidence – all these experiences, all this torment – not lead to a change of the law in this country? How can we turn our backs on what we know is happening, this terrible and widespread suffering?
Well, let us see how it happened last time.
~ - ~ - ~
The story of how the Northern Territory law came to be repealed by Parliament bears repeating, because the forces that stopped it then are still in play.
The joint operation was led on the Liberal side by a young Kevin Andrews – a leading member of the conservative Lyons Forum, dubbed by some the “God Squad” – who worked in tandem with rising Labor star Tony Burke. Only 25 and not even in the Federal parliament, Tony was an ambitious young foot soldier with the Shop, Distributive and Allied Employees Union.
They were supported by a grouping of conservative politicians, from both parties. Their campaign was also given significant extra-parliamentary support from two wealthy and well connected Catholic businessmen.
Looking back now, two things are striking.
First is that on the questions that are most fundamental to how we live, love and die, religious belief trumps everything. This is the theocracy hidden inside our democracy.
Second is that what Kevin Andrews and Tony Burke engineered was an outright denial of the will of the people of the Northern Territory, as expressed through their elected representatives.
It’s an issue where denialism is still rampant today. Denial of the public will. Denial of the evidence.
I learned first hand how this works when I attended an international conference hosted by the HOPE anti-euthanasia organisation in Adelaide last year. Convened by a one-time senior officer of the Catholic Archdiocese of Adelaide, the conference heard a lot about how to influence politicians. This was how former New Hampshire legislator Nancy Elliott, spelt out the tactics that had worked for her in the States.
“When you have lots of arguments,” she said, “if one argument gets blown out of the water, you still have more, and each argument will reach somebody else”
For instance, one way to oppose assisted dying is to suggest it is a threat to disabled people. I'll explain why this is untrue later, but as Nancy enthused: “Right now the disability argument is really kicking it. It's very powerful. 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.”
Citing elder abuse and suicide contagion as other possible arguments, she went on to say: “You only have to convince legislators that they don't want this bill. 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”
I call these tactics FUD….Fear, Uncertainty, Doubt. Sow one seed of FUD and you can reap a harvest of political inaction. Just scare the hell out of people. Without ever engaging with the evidence accumulated over 20 years in countries with assisted dying laws.
And here it is: ONE, the majority of the people who access these laws overseas are dying of cancer, and are in the last weeks, or even days of their lives.
TWO, the groups most in need of protection from abuse under these laws – the elderly and the disabled – have faced no increased risk under them.
THREE, these laws have not adversely affected the relationship between patients and doctors but in fact, its opposite.
And FOUR, that there is a powerful palliative effect in simply giving people the means of ending the horror. Some sense of control. Even if they choose not to use it.
This evidence is overwhelmingly accepted by the people, medical professions, media, courts, and parliaments in the places where these laws exist.
If you aren’t even going to proceed on the basis of evidence, what are you doing? You’re engaging in a deliberate strategy of denialism and the propagation of myths.
Myths that have been planted in the minds of many as the truth because, at face value, they sound plausible. I went to test them.
Myth 1. The slippery slope.
The idea being that, once you write a law to assist people to die, there is no way of controlling it. Let me take that face on. It’s such a potent and alarming proposition, I searched assiduously for credible evidence of it in countries with assisted dying laws - and found none.
Nor did the Victorian Committee, which travelled overseas to the same countries to speak with doctors, medical and legal experts, palliative care specialists, disability rights groups, and opponents of these laws, to see how they were working. Instead, they found:
rigorous safeguards, monitoring procedures and high levels of compliance sitting within robust regulatory frameworks focussed on transparency, patient-centred care and choice.
Instances of assisted dying are rare, they reported, and assistance in dying is, in the vast majority of cases, provided to people in what would otherwise be the final weeks of their lives.
They concluded: We found no evidence of institutional corrosion or the often cited ‘slippery slope’.
Neither did the Quebec Select Committee before them, which spent two years on its own investigation before recommending for a law on assisted dying. It reached the same conclusion as Victoria: no slippery slope … and tiny numbers of people using the law.
The numbers? In The Netherlands, according to official data accepted by their Parliament, those assisted to die comprises less than 4% of all deaths each year. In Belgium, it’s less than 2%. And in Oregon, remember, it’s less than half of one percent.
In all three places, after decades of operation, public support for these laws is in excess of 80%; opposition under 10%. All these numbers have been stable for many years.
So let’s say it clear, and move on: no slippery slope.
Myth 2. No law can be written to safeguard the vulnerable.
The most frequent dog-whistle used by opponents of assisted dying. The insinuation that those most vulnerable in our society, the elderly and the disabled, will be coerced to die under these laws because they have become a ‘burden’.
As Archbishop, Anthony Fisher, so cleverly put it at a public debate last year: Putting granny out of her misery so easily becomes putting granny out of ours.
As with the slippery slope, there is no credible evidence from overseas to support this. Rather, there’s a mountain of widely accepted, publicly available, peer-reviewed, evidence to disprove it.
Representatives of peak elderly and disability groups who I spoke with in Belgium, The Netherlands and Oregon reported no abuse – or threat of abuse – to their members in all the years these laws have operated.
Australian palliative care physician Dr Linda Sheahan used her 2012 Churchill Fellowship to explore how these laws work overseas. Not an advocate for assisted dying - but an advocate for an informed debate about it - Dr Sheahan concluded:
The Slippery Slope in terms of risk to vulnerable groups has not been demonstrated by the data.
Why? Because once you understand how these laws work you understand how they protect the vulnerable. More on that later.
Myth 3. If things get bad doctors will help you anyway.
They might and, as the Victorian Committee found, some Australian doctors do. I suspect many of us in the room know such cases. All these doctors are liable to prosecution and some - for ethical or legal reasons - refuse to take the risk.
And if they do help it must be done covertly. Which results in a terrible irony, the very situation anti-euthanasia campaigners seek to avoid. People despatched in secret - for who knows what motive? No supervision. No record. No regulation.
That is the current status quo. Patients have no right to insist on relief from their suffering. Doctors have every right to refuse. Its not only dangerous and murky, but also deeply unfair. Because, while the person in bed 2a may get that extra morphine, the person in bed 2b may not.
And what if the person in bed 2b is you?
Why should any of us be put at this risk? No one is protected. Not the doctor and not the patient. That’s why we need laws, and open, transparent decisions.
Myth 4. Powerful drugs and palliative care can eliminate pain and distress at the end of life.
Australia has one of the best palliative care systems in the world. We should be proud of it. Any serious proponent of assisted dying supports their work and agrees they should be better resourced. But all the resources in the world won’t address everybody’s suffering and Palliative Care Australia knows it.
In their own words they “cannot relieve all pain and suffering even with optimal care”. Their statistics, collected every year from 106 palliative care units around Australia, prove it. The Victorian Inquiry found the same.
This is not to criticize their work. The numbers of people truly beyond their help are small. But they exist. And their suffering, as recorded in this book, is savage. This is the reality of modern medicine. Yes, it can keep us alive longer. But it can’t always treat what comes with that.
It is also a statistical fact that those who might seek assisted dying aren’t all in hospital. Some are struggling to cope in nursing institutions and old-aged facilities. Others at home. In his evidence to the Victorian Inquiry, Coroner Olle stated clearly that many of those whose suicides he recorded, were people ‘unlikely to qualify for palliative care’
And, of course, there are others suffering with long-term, incurable illnesses, such as advanced MS and Motor Neurone Disease, whom no amount of palliative care will adequately help.
As to the argument made by some doctors that ‘powerful drugs at the end of life can treat all pain’: It’s a medical sleight of hand. True in most cases, but not in all. Here is Professor Richard Chye Head of Palliative Care at St Vincent’s Sacred Heart, Sydney:
I’m not going to say I'm going to control everybody's physical pain … because there will always be some patients who will have pain that is not controlled … but I also make sure that I tell patients ... I am going to help you live with that pain’.
But pain is only part of the story. Because the relevant word here is not ‘pain’, but ‘suffering’.
I don’t want to force you to sit through a litany of symptoms that can create suffering but they include panic brought on by suffocation, delirium, nausea and mental anguish.
Sometimes they overlap. Often they are compounded by multiple side effects from multiple drugs. The option most usually taken when they can no longer be controlled is palliative sedation - being put into a coma.
For many patients and their families this is perfectly acceptable.
But not every patient wants to die in a coma while their family watches on. And it neatly sidesteps the reality that this option is a response to suffering has already happened. Suffering that may have lasted days, weeks, even months.
And if this was your mother, your sister, your father, would that be enough? Would you want them to be ‘helped to live’ with that suffering - or should they be offered the chance to escape it? What would you want for yourself?
Everyone I spoke to in palliative care, whether they believed in a law or not, acknowledged the existence of ‘bad deaths’. Patients who they ‘wish they could have done more’ for.
And in these hardest cases no one is spared. As one palliative care physician told me: The dying are the witnesses to their family’s pain just as the family are witnesses to theirs.
~ - ~ - ~
The leadership of Palliative Care Australia opposes a law for assisted dying. This opposition is more than purely medical. Almost 60% of Australia’s palliative care services are provided by the Catholic Church. Their core ethos is to ‘neither prolong nor hasten death’.
Yet the conversation within palliative care is slowly changing, partly due to the research of Dr Sheahan. Her study of practices overseas show that in places where these laws exist palliative care services have actually strengthened.
Significantly, the Victorian Inquiry recommended strongly in favour of increased resources and funding for palliative care in conjunction with an assisted dying law.
It also highlighted the words of the ‘father of Australian palliative care’, Professor Ian Maddocks, who said:
Rather than fighting a rear-guard action, I suggest the proponents of palliative care join forces with advocates of assisted dying, and with mutual respect and dialogue ensure that laws are framed with a care and precision that allows no abuse and promotes best outcomes.
He’s right. The aims of palliative care – to alleviate suffering and make possible a ‘good death’, for the dying and their families – are also the aims of those who seek a more compassionate law.
It is important, in writing that law, that palliative care be brought to the table.
~ - ~ - ~
And then there’s disability communities, with their own unique concerns and divided opinions.
Some strongly oppose assisted dying. This comes from their lived experience of being viewed as having lives of less value. I have no doubt this experience is genuine.
Others are strongly in support. They want the same choices available to them as for anyone else.
Both rightly demand to have adequate safeguards in place so that a person is never pressured into ending their life. They, too, must be heard when writing a law.
~ - ~ - ~
So what might that law look like?
Based on those that have been successfully written overseas, it would have three bedrock principles:
To access it, you must be a mentally competent adult. This excludes children or those with dementia or Alzheimer’s disease.
Your request must be voluntary.
You must suffer from a physical illness. This excludes purely psychiatric suffering.
At a minimum, you should be diagnosed with a terminal illness. This is defined in Oregon as “an incurable and irreversible disease which will, within reasonable medical judgment produce death within six months". Though some, like myself, would argue against a time limit because some conditions have a longer prognosis but are nonetheless intolerable.
For example: There is a strong case for a law that will also help those suffering from chronic, degenerative illnesses such as MND and MS. The suffering which can last months or years in these conditions may be, in some ways, greater than that of an illness such as cancer. Almost half of the cases listed by Coroner Olle fall within this definition.
Before excluding them we have to ask ourselves ‘is that fair?’ If not, I would argue that the criteria for acceptance be an “irreversible and incurable physical condition which is unbearable to the sufferer”, a broader law closer to those in Europe and Canada.
The gates someone has to go through to qualify are the same in either case. They are many.
The first gate is you and your natural aversion to being dead. Only you can ask for assistance. And only if you are of sound mind.
The second is to convince two doctors, independent of each other - at least one of whom practices in your disease - that your symptoms are either terminal or irreversible, incurable, and unbearable.
As in the Netherlands, the first consultation should be without the family, so the doctor, usually your GP, can determine if this is, indeed, your considered wish.
The third gate is that a request for assistance to die must be put once in writing - independently witnessed - and twice orally.
The fourth: both doctors have to explore all treatment options with you, including palliative care.
The fifth gate is that should either doctor consider that any psychological disorder is impairing your judgement they will refer you to a psychiatrist, as happens in Canada, California, Oregon, Belgium and the Netherlands.
Once your primary doctor is satisfied you have met all the criteria, she will then write you a prescription for life-ending medicine, which you can drink.
Having received it, you have to complete a form attesting this is your decision and you fully understand its consequences. This to be included in your medical record.
All of which leads to the final gate: Again, you.
Only you can decide to drink the medicine. As Oregon shows, many choose not to. You can rescind your request for it at any time.
If your disease means you can no longer swallow, a doctor may legally inject you.
Your written requests and medical record, both doctors notes and, if required, the psychiatrists’, all go to the Coroners office and also a committee of review. In the Netherlands this consists of a doctor, lawyer, and ethicist. Both bodies have the power to call in doctors for questioning and to refer their conduct to police for prosecution.
That is what a law for assisted dying would look like. Not a license to bump off granny. A carefully written law you can access only if you have an extreme medical condition and which protects doctors from prosecution should they follow strict criteria.
I want to emphasise that what I'm proposing is a law to make legal a practice that’s already happening in Australia. But happening - as the Victorian Inquiry found - “without regulation, without support, without transparency or accountability, and from the evidence received, sometimes without consent."
~ - ~ - ~
In Australia right now, if you are dying and wish to end your suffering, by law you are allowed to commit suicide, with all the darkness and trauma that entails.
Also by law, you can opt for a slow exit, refusing treatment, including food and water, even if its life sustaining. This can take days, even weeks, and was described to me by a senior palliative physician as psychologically painful, both for the person going through it and their loved ones watching on.
How extraordinary is this, to live in a society where it is legally and ethically acceptable for a dying patient to endure a slow, tortuous death by dehydration and starvation – or to end their life violently and alone … yet it is legally and ethically unacceptable for that same dying patient to choose a quick and painless end to their suffering.
Yet this is the position that the Church and the AMA continue to lobby for. Not their constituencies, surveys suggest - only 29 pc of Australian doctors are actually members of the AMA; a majority of Catholics polled support assisted dying laws.
But their well-connected hierarchies are not for turning.
And those most affected by the power of these vested interests – the elderly, the sick, the grief-stricken, the traumatised – are, often, those least capable of pushing back. It’s an unfair fight.
So I have formed an organisation to fight for them. It’s called Go Gentle Australia. Our aim is to bring awareness to the suffering that is happening in our community and to galvanize that 70% of public support so that politicians can no longer ignore it.
We are being supported in this by people representing many groups – doctors, nurses, palliative care, cancer support, the disability community, the elderly, the legal fraternity, and politicians from all parties.
We don’t argue for a ‘right to die’. Death is not as a right. Death is a fact at the end of life.
We do argue for the right to have a choice about what happens to us at the end of our lives. Not to be coerced, when we are at our most vulnerable, into cruel and avoidable suffering.
Our first priority is to get a law properly debated – on the evidence - within every State parliament. Our second is to get a sensible and compassionate law passed. To stop this damage.
We have received financial backing from a number of organisations and some of Australia’s most respected business names. We’ll be saying more about them in due course, but I would like to mention one: Peter Joseph, Chairman of the Black Dog Institute and former Chair at St Vincent’s Hospital Sydney, who is here as our guest and has offered this statement:
"It's simple: a good life includes a good death. Just as we should live free from needless suffering, so we should die. In my opinion the suicide rate in this country would drop significantly if assisted dying was seen as part of assisted living ".
We are also working closely with a key medical group that officially supports an assisted dying law. Significantly, the one that see the suffering of patients daily and up close: Australia’s nurses’ union, the ANMF.
But we are under no illusions about the behind-the-scenes power, and deep pockets, of those who oppose reform.
This book is the first part of our campaign. We have also created this print ad. It’s full page and we can’t afford to run it, so this might be the only time it’s seen. But we’d be delighted if someone would like to run it for us.
~ - ~ - ~
The Damage Done is not intended as a critique of Australia’s palliative care services or the dedicated doctors and nurses who give of their best. Rather it reveals what happens despite their efforts.
It is intended, however, as a rebuke to those politicians who have been derelict in their duty these past two decades, when 28 attempts have been made in different State parliaments to pass an assisted dying law. Not one has got to a stage where even the detail of such a law could be debated.
By failing to properly examine the claim that ‘no safeguard can be devised to protect the vulnerable ‘, our politicians have failed, instead, to protect the people they represent.
After all, who could be more vulnerable or in need of protection than the dying and their families?
There is every reason to believe the damage and despair found unacceptable by the Victorian Inquiry exists across Australia. And will likely increase as our population ages.
That harm, and the testimonies collected here, ask hard questions of us.
Simply opposing laws on moral or ethical grounds is not an answer to these questions. Denial and manipulation of evidence is not an answer. This is a serious public health issue.
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 suffering, is a national tragedy.
And for all those who do end their lives, how many others lie in nursing homes and hospitals, wishing they could be helped, mercifully, to do the same?
How many patients are dying without enough pain relief because doctors are terrified to give them more?
How many doctors, confronted by the suffering of their patients, are being forced to break the law, knowing they have no protection?
And how many Australians are suffering years of chronic, unrelenting pain … while their families are scarred with trauma and guilt because they can do nothing to help the ones they love when they most desperately need it?
In the words of Coroner 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.
I believe that no compassionate society would knowingly support this.
We are a compassionate society. But we have not been aware of the scale of the damage.
That’s why I’ve come to light a fire.
A fire for all the people in this book and also for those whose stories we do not yet know. I invite them to come forward and make it bigger.
I invite those doctors and nurses who’ve seen this suffering, and know it to be wrong, to add to this fire and light it in their hospitals and their communities.
I invite all state coroners to build it higher by joining Coroner Olle in casting light on how our elderly are dying.
Let us make a fire so big no politician can ever again ignore it.
To those whose beliefs instruct you that only God can decide how a human being should die, I urge you, step aside. May your beliefs sustain you and those you love, but do not impose them on the rest of us.
To those doctors for whom ‘doing no harm’ means that you cannot, in conscience, participate, I urge you, too, to step aside. Do not stand in the way of other doctors who, in equally good conscience, see leaving a patient to suffer when they are beyond meaningful medical help as doing more harm.
Step aside and let no one question your right to do so. The very core of these laws is that they are voluntary. For doctors and nurses as much as patients.
And to those doctors who are sitting on the fence because you think it’s all being taken care of, or because you don’t understand how these laws work, educate yourselves.
The safeguards written into these laws protect, not just your patients, but also you.
To the politicians of South Australia, who, for the 14th time, have a Bill before them – and to those of Victoria, Tasmania and NSW, who can expect new Bills within the year – I urge you: Do your duty.
Debate these laws properly. Understand what they are. Look at the evidence from overseas about how these safeguards work. And read this book.
Enough copies have been printed for every State and Federal politician in Australia.
Should you continue to stand in the way of a law for assisted dying, let it be in full knowledge of the suffering taking place in our community because of that refusal.
Write this law. And right this wrong.