Dying with dignity

By Gideon Cordover | 11 Feb 11
From right: Gideon, Robert and Michael Cordover, taken a few weeks before Robert's passing.

I come from a very noisy family. My dad spoke six languages and told jokes in all of them; he was the family storyteller. My mum grew up in London traffic and I am the youngest of five outspoken children. When I was eighteen years old, the stories stopped. The valve between my dad’s oesophagus and windpipe was the first part of his body to become faulty and it strangled his voice.

Have you ever watched someone die from a terminal illness? Now that I have, I do not want a needlessly drawn-out, bad death. Hopefully, by the time illness strikes me, the law in this country will have been changed to allow voluntary euthanasia. I mourn for those who have suffered a bad death, forced on them by a system that undervalues human rights – a system that does not listen. The current legislation banning voluntary euthanasia is a relic of a religious past and has no place in a pluralistic, secular democracy. When you meet someone in the process of dying who has been denied control over their own suffering, it makes you think that the status quo is barbaric and needs to be changed.

Access to voluntary euthanasia is fundamentally about choice and harm minimisation. In On Liberty (1859), John Stuart Mill explains that “over himself, over his own body and mind, the individual is sovereign.” In a just society, the individual should be able to express autonomy without government interference, so long as it brings no harm to others. The logical corollary of the right to life must surely be the right to death.

The logical corollary of the right to life must surely be the right to death.

Respect for individual autonomy and bodily sovereignty is a core tenet of a civilised society.

In June 2009, my father took his own life. For six months he had observed the symptoms of motor neurone disease eat away at his body. Motor neurone disease is a terminal illness that causes muscular degeneration, trapping the sufferer, with brain intact, inside a progressively less functional body.

The suffering associated with motor neurone disease is not only physical, it is existential. My dad had seen his mother die from the same disease and was aware that the average life expectancy after diagnosis is less than three years. When a painful end became a certainty he was faced with the options of suffocation, starvation (after being “palliated” into a coma with analgesics) or suicide. It seemed only fair that my father should have been given the support to end his life painlessly, with dignity, at a time of his choosing, with his family by his side in accordance with his wishes.

The principle of voluntary euthanasia law is simple:

If a mentally-competent terminally ill adult decides, without coercion, that their quality of life is not sufficient to meet their personal benchmark of contentment then they should have the option to be granted assistance to die a good death. This, of course, takes place under the proviso that there are responsible, sympathetic doctors available who feel willing to acquiesce and facilitate that patient’s wish to die.

In this country, today, there are such doctors and there are such patients. Suicide is not illegal and denying help to those without the physical capability to suicide is discriminatory. Despite fear campaigns to the contrary, all proposed voluntary euthanasia legislation contains checks and balances in order to stifle abuse and enshrines a legal framework within which doctors are able, with legal impunity, to minimise suffering.

All proposed legislation in Australia to date has been specifically tailored to meet the requests of mentally competent, terminally ill adults. Scenarios involving myriad other cases such as Alzheimer’s, Schizophrenia or terminally ill children, for good or for bad, fall outside the field of this discussion.

According to the legislation, the sufferer must be assessed by two independent doctors: one with experience in treating that specific terminal illness and the other a qualified psychiatrist. This ensures both that the patient has no chance of recovery and that the request comes from a place of rationality, not as a result of treatable depression. The sufferer must be informed of every palliative and psychiatric alternative available. The sufferer must have been a resident in the state for more than 12 months to avoid hypothetical “euthanasia tourism”. At no stage can the patient have given any indication that they have changed their mind, and a “cooling off” period is included after signing the certificate of request. Only then will the sufferer’s request be granted.

Detailed records and assessments must be included to ensure that no financial or other gain, direct or indirect, will be attained by either the doctors or those signing the certificate of request. A health care provider is not under any duty to participate in the provision of euthanasia. If one were to break the law in any way then they would be charged, convicted and imprisoned in accordance with our criminal justice system.

These were some of the robust safeguards included in the 2009 bill presented before the Tasmanian parliament. As the bill was being debated, a short drive away, my dad was dying. The bill would have allowed him to hang on a few more weeks or months without worrying that his window of opportunity for a dignified death would close. The bill did not pass.

Since my father’s death, I have been compelled to defend his decision in the face of needlessly hurtful, fear-based opposition campaigns. The fact is, no matter what your religion or moral code, there is a civic imperative to prioritise human rights and tolerate the beliefs of others.

Voluntary euthanasia will always be voluntary, and criminal behaviour will always be criminal. I do not believe that reform will lead to an erosion of civic values, a society where elderly people are seen as expendable, or where you have to worry about your doctor killing you. Based on the evidence from the ten countries where voluntary euthanasia laws are already in place, the “slippery slope” argument is one without validation. To suggest that voluntary euthanasia law is dangerous because it encourages the taking of life is like saying that hospitals are dangerous because they encourage sickness.

Day by day, my dad’s body lost functionality. He could only correspond through sign-language or writing. Once his arms stopped working he would no longer be able to communicate. It is humiliating to cough and splutter in a music recital or at a restaurant. So he stopped going out. He had tolerated the toileting and bathing. He had tolerated his children tying his shoes. Trapped, he would not even be able to tell us how much pain he was in. For my dad, quality of life was more important than sheer survival. He had a benchmark of basic contentment beyond which he felt existence was intolerable.

When he wrote in a notebook that we should take him out to the bush and let him wander into the forest to die I thought he was joking. He started writing the same thing more and more frequently and it became clear that it was a serious consideration. Suicide by exposure to the elements is legal. A messy, violent suicide is allowed. However a safe, painless physician-assisted death is forbidden.

My father did not want his wife or children to be charged with manslaughter for assisting his suicide. A law was not in place that would allow him to have help taking his own life after he became incapacitated. As a result, he had to die early by his own hand while he had the mobility to balance a spoon between his thumb and forefinger.

Robert Cordover, at age 69, died peacefully, albeit early, with his family at his side, at his home in rural Tasmania. He had a good death: fearless and pain-free because he was able to procure life-ending medication from a Melbourne physician. Although he had no medical supervision, luckily, everything worked. He had lost his voice, could barely swallow or move his arms, but his brilliant mind was as active as ever right up until he closed his eyes for the last time. He scribbled jokes on a napkin that evening, laughed with us, hugged everyone, smiled and waved goodbye. I can’t think how our family could have made better of a bad situation.

I’m proud of the way he conducted himself and how his family supported him. His choice was the most important thing. And although it hurt to say goodbye on that final evening, we were all together and he was happy. It was his life and it was his death. Other Australians are out there facing a bad death. They are asking for choice, compassion and understanding. It is time we listen.