In a powerful op-ed in the Irish Times on 12th April 2011, an Irish man with degenerative motor neurone disease (MND) has revealed how he was heavily pressured by the medical community to refuse the ventilator that is keeping him alive.
After having been admitted to intensive care for pneumonia, a common complication for paralyzed patients, Simon Fitzmaurice began receiving assisted breathing and a feeding tube. Shortly after being admitted, Fitzmaurice said, a doctor came in and told him it was rare and expensive for patients to have a ventilator at home.
According to Fitzmaurice the doctor told him, with his wife and mother present, "That it is time for me to make the hard choice. He tells me that there have only been two cases of invasive home ventilation, but in both cases the people were extremely wealthy."
"He looks at me. 'This is it now for you. It is time for you to make the hard choice, Simon.' My mother and my wife are now holding each other, sobbing."
But Fitzmaurice's instinctive reaction was for life: "While he is looking at me, my life force, my soul, the part of me that feels like every part, is unequivocal. I want to live. It infuses my whole body to such an extent that I feel no fear in the face of this man."
Two days after this encounter, he wrote, he and his family were informed that the home ventilator he needed was covered by Ireland's national health insurer, the Health Services Executive (HSE), and that the home care package needed to run the machine could be covered by the HSE and his family.
Fitzmaurice recounts that was later asked by a neurologist why he wanted to live, even though he had a degenerative disease that would eventually kill him. His answer: "Love for my wife. Love for my children. My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live. Is that wrong?"
"Motor neurone disease is a killer. But so is life," continued Fitzmaurice. "Everybody dies. But just because you die, just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to take my own life. Or to endorse euthanasia. I refused."
Experts say that Fitzmaurice's experience is not uncommon and that incidents like these are becoming a trend in medical practice – a trend that has become nearly universal in developed countries, especially those with nationalized, government funded health care.
"Sadly, his story is all too common," said Alex Schadenberg, head of Canada's Euthanasia Prevention Coalition.
Schadenberg said that philosophical trends away from traditional medical ethics, combined with massive tax-funded health care systems, have given rise to a new utilitarian-based ethical paradigm in treatment decision making.
Under this paradigm, called bioethics, Schadenberg said, "value judgments and negative attitudes toward people with degenerative conditions have led to imposing death on people who are vulnerable."
Hospital bioethics committees now routinely decide to withdraw treatment that could save lives, based on the principle of "patient autonomy" that holds it is in the patient's "best interests" to be "allowed to die," often by the withholding of food and water.
These decisions are increasingly being taken without the consent, and sometimes actively against the will, of the patient and his family. In some countries such as Belgium and the Netherlands, the new ethical system has led to legalized euthanasia and widespread abuse of the legal "safeguards" surrounding it.
Recent studies out of Belgium have shown that 32 percent of all legal euthanasia deaths are committed without request or consent by patients or families and only 47.2 percent of all euthanasia deaths are reported. In the Netherlands, the number is 550 deaths without request or consent each year and at least 20 per cent of all euthanasia deaths unreported.
Everyone needs to be aware, society is already imposing death on vulnerable people and if euthanasia or assisted suicide becomes legal then it will simply be done in a quicker and quiet manner.As for Fitzmaurice, he writes: "I do not speak for all people with motor neurone disease. I only speak for myself. Perhaps others would question whether or not to ventilate. But I believe in being given the choice, not encouraged to follow the status quo.
"I am not a tragedy," he said. "I neither want nor need pity. I am full of hope. The word hope and MND do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That's hope."