[WATCH] ‘I want to live, not exist’, ALS sufferer tells MPs during euthanasia hearing

Joe Magro speaks to MaltaToday following Family Affairs committee hearing

John Magro, who suffer from ALS, appeared in front of the Family Affairs Committee in parliament to explain why is demanding that parliament should legalise euthanasia for patients suffering from illnesses for which no remedy exists.

Magro, who is the first private citizen ever to have his issue debated in committee on his own request, has stated publicly that unless euthanasia is introduced, he would rather commit suicide than go through the latter stages of ALS.

“I want to live, not simply exist,” he told MPs on the committee, when invited to make an opening statement by committee chairman Godfrey Farrugia.

Magro said parliament should consider the individual’s right to choose to die, but stressed said choice should only be granted to patients of terminal diseases that doctors certify as having no possible cure.

“You, as politicians should consider a person’s rights. And this is my right,” he said. “What if it were your parents, or your children, who was asking you for this? Consider that.”

Farrugia noted that, as a practising doctor, he considered any patient’s reference to suicide as a cry for help.

“And I am very sorry when I hear you speak of committing suicide,” he told Magro.

Farrugia stressed that the committee was called to consider the issue before it on ethical principles, without bringing religion into the equation, and that the main issue in question was the dignity of life.

When replying to comments by members of the committee, Magro insisted that MPs had every right not to agree with his position.

“But you have no right to keep me alive at all costs,” he said. “If you don’t want to help me, then don’t. But why shouldn’t someone willing to assist me, not be allowed to?”

As to who would be able to chose euthanasia, Magro said a patient would need to have his mental faculties intact to make such a decision.

Joe Magro at the big table with members of the Family Affairs Committee

Otherwise, the principle of advanced directive could be introduced, instructing doctors how to proceed should the patient find himself without the capacity to make a decision.

Such a principle exists in various forms in other countries, and functions on the same line as drawing up a will, or deciding to have one’s organs donated after death.

Magro said that one should value life, and fight for life at all costs.

“But when you reach a stage, where doctors can certify that there’s no hope, and no cure, then you should have the right to choose to die with dignity.

All the members on the committee thanked Magro for appearing before them to explain his position. They praised him for his courage to bring such a topic up for nation-wide discussion, when such subjects had been taboo before.

Farrugia said that the issue will be discussed in a joint meeting of the committees of Health, Social and Family Affairs when Parliament re-opens after the summer recess next October.

The debate on euthanasia, which remains one of the last taboo subjects in a largely conservative society, intensified following an interview carried by MaltaToday with Magro in February.

Magro was diagnosed with ALS, a deadly neurodegenerative disease that affects nerve cells in the brain and the spinal cord, a year ago.

“I do not want to be a burden on anyone. I do not want to be dependent on my family to eat, drink, wash or simply go to the bathroom. I will live as long as I can but once it gets to a point where I cannot live life in dignity I will commit suicide,” he had said in the interview.