Few of us can put the case for such legislation as powerfully and as eloquently as Gideon Cordover in his email of 1 May 2013 to the members of the NSW Parliament for their current debate on the Bill, Rights of the Terminally Ill. We reproduce that email below with the permission of Gideon and with the support of his mother, Nica, brother Michael, and sister Tamar.
This is Gideon’s story:
My father, Robert Cordover, was suffering from Motor Neuron Disease, a terminal illness, when he took his own life on June 22, 2009. I was 19 years old. Robert did not want a lingering death and figured he had to act early whilst he still had the mobility to die alone, before the impending total paralysis. Had assisted dying been legal my father could have survived for weeks or months longer. I would have done anything to have had just a bit more time with him. That is why I write to you now.
Robert was fully informed about his palliative alternatives (withdrawal of treatment, medical dehydration, induced coma). The average life expectancy for sufferer of this disease is less than three years. No one in history has ever recovered. A scientist, my dad knew the odds of him being the first. His mother had died from the same illness and he knew what to expect.
Robert was a man who had loved his life and was not prepared to suffer needlessly or waste away slowly without any of the quality he once enjoyed. He felt ready and I respect his decision. The law did not.
Had assisted dying been legal my father could have survived for weeks or months longer.
I am heartbroken that in order to protect his family from being implicated in his death and prosecuted, he took steps to die early. I feel upset that no-one would listen or respect his rational request to die on his own terms. He should have had more options rather than being condemned to select from the Hobson’s Choice of a lonely suicide or a drawn-out, undignified death.
Robert’s physical pain was unbearable. Fasciculations, involuntary muscle spasms like never ending pins and needles all over, kept him awake and since the valve between his esophagus and windpipe was faulty he could not eat or drink without choking. He was fluent in half a dozen languages but could no longer speak at all. He was once an intervarsity wrestler and had worked outdoors all over the world as a marine biologist but now he was weak and hungry and breathless. He loved the Reef and taught us all to snorkel from an early age so together as a family we went to the Great Barrier Reef for one last hurrah but he could not join us in the water. He had to sit on the boat.
He could barely use his arms anymore. Each day was getting worse, more difficult, more frustrating. The ‘natural’ death he had to look forward to was suffocating on his own saliva after a prolonged period of being trapped inside a functionless body, his mind still racing. He described the ordeal as torture. Unrelenting torture. And for all our best efforts, he still was having no fun.
He described the ordeal as torture. Unrelenting torture.
Physical pain is actually not the contingent factor for many sufferers’ rational requests to die. Existential suffering is often more profound.
I remember once, in the early stages of his illness, helping dad tie his shoes. I thanked him for letting me help him. I said that I appreciated this opportunity to care for him as he once cared for me. I remember him tying my shoes as a child. I was pleased to be able to reciprocate that kindness, patience and tenderness that he showed me. He smiled, a sad, hollow smile.
Later he scribbled on his notepad ‘It might be okay for you, but it’s not okay for me’.
For more than six decades, Robert had cleaned, toileted and tidied himself. He was a fast-moving, fast-talking, loud-laughing, towering pillar of strength and self-sufficiency. He was brave and dynamic and rich with stories and good memories. And this disease took it all away from him.
We could have turned him in bed and stroked his hair as we fed him. We could have laughed with each other by his bedside or told him stories about our pursuits for days, weeks, months or years into the illness but that was not what he wanted. That kind of palliative care was not enough. He wanted to be able to engage. And once he could no longer, he was satisfied enough to call it a day.
On Robert’s journey towards his inevitably difficult death, he was turned away by many doctors who were unwilling, for fear of prosecution or bad reputation, to even talk about end-of-life options. Concomitantly, his suicide was risky. It lacked any medical mediation and so anything could have gone wrong. Many people, turn to more violent, ultimately traumatising, methods.
The majority of the five elderly Australians that suicide each week achieve their desired result by hanging. Rope from a hardware store is accessible and cheap. For the terminally ill, getting balanced, honest information from a doctor is not so easy.
However, once Robert had the life-ending medication in his possession his mood entirely shifted. He became much more positive and productive; like a great weight had been lifted. He had peace of mind. After nearly sixteen years researching the effects of the Death with Dignity Act, the Oregon Health Authority supports my anecdote. There, more than one third of people prescribed life-ending medication do not use it.
Robert’s suicide went unreported but in hindsight it was illegal because he was assisted by a sympathetic doctor. Had he instead hanged himself, jumped off a cliff or shot himself then his actions would have remained within the letter of the law. The fact that he was given access to a painless, life-ending drug was the problem according to the current, broken, system. It is discriminatory that an able-bodied person can suicide legally but someone without that physical capacity cannot.
We should all be entitled to exercise our autonomy. Allowing people to suffer against their will is cruel and needless. My terminally ill pet can be euthanised, humanely, and he cannot not even ask for it. My father, who made repeated, informed, rational requests was denied that same degree of compassion.
Assisted dying law reform is just one more extension of the democratic good.
The majority of the community, nearly 80%, support this reform. It is unfair that such a slim minority viewpoint should continue to hold a disproportionate political power and stifle social progress on this issue. Not everyone has to use voluntary euthanasia legislation but it is not fair that those who do not want to use it can deny other Australians their right to individual sovereignty and bodily autonomy.
For too long, these groups have been spreading fear, uncertainty and doubt; deliberately utilising misinformation campaigns and promulgating slippery-slope arguments that have no basis in fact.
From Oregon, Washington, the Netherlands, Belgium, Luxemburg and Switzerland, we now know that there is no legitimate evidence to indicate the exploitation of vulnerable groups after the introduction of similar laws overseas. Why should it suddenly happen here?
There is now a profusion of evidence accumulated by jurisdictions overseas that supports the possibility of successfully implementing assisted dying provisions.
The logical corollary of the right to life must surely be the right to death. Death is an inevitability. Recent technological advancements have greatly increased our life expectancy but not our apoptotic potential. Most of us hope for a quick, painless ‘natural’ death but the reality is sometimes very different, like it was for my dad.
Allowing people to suffer against their will is cruel and needless.
When it comes to end-of-life care, the current status quo that denies choice and prosecutes loved-ones for their compassion represents a fundamental departure from the civic values promoted by a pluralistic, secular democracy.
Please, for my father and my family; for those currently suffering and those pleading for choice; I implore you to vote in support of dying with dignity legislation.
Gideon Cordover Sydney NSW 2033, Australia