Since I became involved in the campaign for voluntary euthanasia, I have been overwhelmed by the touching personal stories that members of the community have shared with me. These people have been compelled to share their stories after watching a loved one needlessly suffer excruciating pain before their death. Particularly poignant was the story of Sarah Edelman describing her father’s experience in palliative care following his diagnosis with incurable cancer. “The cancer that was growing inside of him caused him severe pain whenever he ate, so dad was limited to tiny quantities of soup,” wrote Edelman, who was shocked to discover that her father was not exaggerating when he said he was eating less than a two-year-old. Edelman was quick to praise the attentiveness of nursing staff and the facilities of the palliative care centre that her father was admitted to weeks after his diagnosis. Unfortunately, her father’s condition quickly declined. She wrote:
It is impossible to describe the weakness and fatigue that beset my father in those last few weeks of his life. The fatigue was utterly debilitating—incomparable to anything I have ever imagined, and with it came deep despair. The weakness increased daily, progressively robbing him of every capability. As even tiny amounts of food caused stomach pain, dad gave up on eating. On their daily visits doctors … had nothing to offer for dad’s weakness and malaise.
Two weeks later, Edelman wrote that her father no longer had the strength to leave his bed, he was no longer able go to the toilet and he was too weak to locate the call button. Shortly after, Edelman recounts, her father developed oral thrush from not eating, causing painful inflammation of his mouth which made it almost impossible for him to speak. Unable to swallow anything, her father tried to drink which resulted in fluid pouring into his lungs. Edelman reflects:
I suspect what made dad’s experience particularly difficult was that he was mentally alert, and so aware of every aspect of his degeneration. As dad’s quality of life diminished, he started longing for death. Repeatedly he told doctors that he could not bear it anymore and that he wanted to die. He described the process as “torture” and he wanted it to end “today”. On one occasion he told the doctor “I never imagined that dying would be so difficult”. The best the doctor could offer him in response was “it shouldn’t be too long now” … Dad had never previously been interested in euthanasia, and if there had been any quality of life to extract over the next few days he would have seized it.
This difficult story does not stand alone. Ronda wrote to tell me the story of her husband, Wayne, a successful businessman and marathon runner who after being diagnosed with an incurable brain disease recognised he would progressively be unable to walk, talk, write, eat or see properly, that he would eventually be unable to stand, and that this would typically be followed by death by choking. While he still possessed the ability to do so he obtained the Nembutal drug—dubbed the peaceful pill—and ended his own life months, perhaps even years, earlier than he would have had to if voluntary euthanasia were available. Wayne’s decision to die was not recognised within our justice system and as a result Ronda was subject to a police investigation that lasted nearly a year and ended with an autopsy of her husband.
Val wrote a similar story of her 94-year-old mother, a former barrister facing her own mental and physical degeneration, who decided to starve herself to death over a prolonged four-week period. Shirley retold to me a story of her husband, Russ, who was diagnosed with an advanced tumour in his left lung. At 78 years old he decided to decline chemotherapy on the grounds that he had been fortunate enough to have lived a good life. Only months later, as his family was struggling to cope with the debilitating effects of his diagnosis, Russ attempted to take his own life by taking a large dose of morphine and slashing his wrists. After this, Russ was rushed to hospital where he told specialists he had had enough of the pain. It then took Russ several months to die at his local hospital.
Beth told me about how she and her children watched her husband, Frank, suffer a series of strokes. After living a very poor quality of life for a year, Frank suffered his third stroke. By this point Frank was in a great deal of pain, having lost all bodily movement, rendering him unable to speak or swallow and causing the restriction of his bodily functions to the extent that he had no dignity left at all. In hospital Frank refused a drip and pointed to letters on an alphabet board saying, “Had enough, no more”. Beth watched the gradual dehydration and starvation of her husband over the next few weeks, an experience she describes as horrendous.
The Rights of the Terminally Ill Bill 2012 to be introduced to Parliament next year will hopefully bring an end to tragic stories like these. It is a fundamental right that individuals die in comfort, in dignity and at the time of their choosing if they so require. These stories that have been shared with me are a pertinent reminder of just how personal is the choice for voluntary euthanasia. The religious, ethical and personal beliefs of others should no longer be permitted to prolong the suffering of the terminally ill.