Living at the mercy of a degenerative disease that could lead to complete paralysis, Joe Magro tells Kurt Sansone why he would like euthanasia to become legal.
Just over a year ago, Joe Magro stood bewildered in front of the bathroom mirror unable to shave his face as he had always done.
He had no explanation for the sudden impairment. Medical tests later confirmed that he had developed problems in his central nervous system.
The harsh news followed: he probably had ALS, a neurodegenerative disease, and his condition would progressively get worse.
I meet the 56-year-old at hospital, accompanied by his wife, Marlene, who is two years older.
We sit at a table in the cafeteria of Mater Dei’s foyer. Joe has just been discharged after undergoing a surgical intervention unrelated to the neurological disease.
We meet a day before Joe is set to appear before Parliament’s Family Affairs Committee, where the debate on his request for euthanasia to be legalised will start. That meeting will be held tonight.
Since last year, Joe’s condition has degenerated further. He is unable to apply deodorant and has had to quit the daily walk he used to enjoy with his wife.
“I also had to stop working at the ironmongery, because it was becoming more difficult to serve clients,” he tells me.
Joe can walk, but his step is wobbly, which has caused him many times to bump into things. He laughs: “People think I am drunk.”
I ask him what his first thoughts were when doctors broke the news of his disease to him. “The single biggest concern was what will happen to me when I am unable to function independently any longer,” he says.
Marlene looks at him and interjects. “He is a perfectionist and it is very frustrating for him to know that one day he might have to depend on somebody else for all his daily needs.”
It is this frustration that has pushed Joe to campaign for a law on euthanasia.
He believes that he should not be forced into living an undignified life, as he calls it. And when that moment comes, Joe believes that he should be allowed to take the decision to end his life.
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MPs to hear request for euthanasia
Joe Magro will make his case for the legalisation of euthanasia when he speaks before Parliament’s Family Affairs Committee this evening.
Mr Magro will tell MPs of his yearning to live in dignity and which he fears will be taken away from him when his neurodegenerative disease leaves him totally paralysed.
Euthanasia is illegal but 12 per cent of doctors surveyed recently said they had received requests for assisted suicide from their patients.
Mr Magro’s request, to be heard by MPs, was taken up by Family Affairs Committee chairman Godfrey Farrugia.
“This is possibly the first time that a parliamentary committee has been convened to hear the request of an individual and not a representative organisation,” Dr Farrugia said.
But Dr Farrugia pledged the debate will not stop with this evening’s sitting. He intends convening a joint meeting of Parliament’s health, family and social affairs committees over the coming months to debate ethically contentious issues like euthanasia and the morning after pill.
“The debate will not end with this one sitting, also because there are various issues that require debate such as the impact of euthanasia on relatives,” Dr Farrugia said.
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“I feel my life will lack dignity if I am totally paralysed and dependent on others, which is why I would like to have the possibility to die in a legal way,” he says.
Patients like him are very likely to lose the ability to move muscles all over their bodies, while their brains remain functional and lucid. “I respect those in my condition who would still want to continue living despite succumbing to total paralysis, but I ask for my right to choose death to be respected,” he says.
Euthanasia is illegal in Malta, and anybody who assists a patient in committing suicide, or attempted suicide, is deemed to be an accomplice.
Elsewhere in Europe, some form of euthanasia is allowed in Belgium, Luxembourg, the Netherlands and Switzerland.
Joe acknowledges the debate is ethically charged, but he believes that the influence of the Catholic Church is the biggest hurdle in Malta.
His observation is backed by the findings of a survey on end-of-life decisions published in the Malta Medical Journal last month. The results showed that, in terms of guidance, the recourse for most doctors would be their religious beliefs.
The findings showed that 90 per cent of doctors would never consider euthanasia for their patients.
“The Church is right to have its teachings and I respect those who want to live by them, but it has no right to impose those beliefs on others. A law allowing euthanasia gives people like me the option to choose a dignified death.”
The Church is right to have its teachings and I respect those who want to live by them, but it has no right to impose those beliefs on others. A law allowing euthanasia gives people like me the option to choose a dignified death.
What about those who lose the mental ability to make such a decision?
Joe says the law should make provisions for people to be able to leave instructions in their wills on how they should be treated if they ever end up in a vegetative state.
He insists the decision in favour of euthanasia should always be made by the individual and not be taken by others on their behalf.
“I am not advocating a law that makes it easy for anybody to choose to die, but a patient should have a right to end his life or have it ended for him if the disease is crippling,” he argues.
And for him, it is not just a question of withdrawing lifesaving treatment, which would hasten death. In Joe’s case, there is no treatment for the disease and so nothing to withdraw. “I will need someone to end my life,” he says.
Marlene holds his hand and squeezes it. It is not a prospect she likes to think about but understands her husband’s fears.
She notes how he got frustrated over the past week because he needed help to wash up because of his operation.
“He has a very independent character, which makes it all the more difficult for him to fathom a situation of total dependence, but if I were to end up in a complete state of paralysis, I would probably be talking like him,” she says.
Joe says that his grown children also agree with his point of view, as have doctors and some politicians, who spoke to him on a personal basis.
Although Joe has become somewhat of a face for this nascent debate in Malta, he is not alone in contemplating euthanasia. The survey of doctors showed that 12 per cent had received requests for euthanasia from their patients.
Joe argues that a law allowing euthanasia would give him peace of mind. It may not be an argument many will understand.
As he senses my apprehension, Joe tells me he loves life.
“I want to live. I don’t want to die but I do not fear death. I enjoy going out, eating at restaurants and having fun. I intend living my life to the full, but when that is no longer possible, I want to have the choice to die.”
Marlene nods in approval. This is about freedom of choice, which will harm no one else, she adds.
This is the argument Joe will be making when he steps into Parliament this evening.
“I do not want to simply exist,” he tells me. We stand up from the table and shake hands.
His grip lacks strength, but Joe is determined to preserve his independence even as it is slowly being taken away from him.
MPs will listen to his story, but whether his wish is fulfilled before his condition worsens remains unclear.
kurt.sansone@timesofmalta.com