While Portugal makes the first step towards legalising euthanasia, writer Beatriz Ferreira spoke to a patient who has already decided he wants to die on his own terms.
From the moment Tiago Antunes was born, all he has ever known is pain and suffering. He was diagnosed with Arthrogryposis Multiplex Congenita and the doctors gave him a life expectancy of only three days.
“I was the second case of the disease in Portugal and the first one with cognitive abilities. I remember my mum telling me how she could barely look at me because she was grieving with the idea of losing her son anytime soon,” Antunes explains.
His disease affects the development of his muscles which means he has limited movements and lacks strength. He walks with the help of a crutch, or a wheel-chair when he is at home. He can’t climb stairs and neither can he raise his arms from a certain point. Besides that, Antunes who is now 34, keeps surviving.
“I try to be a normal guy, maybe other people will do something in three steps and I will need five, but that’s okay. I don’t want people to look at me with pity,” he says.
Antunes was never able to find a job due to the lack of opportunities in his hometown for individuals with disabilities. He graduated from university with a degree in architecture but now spends most of his time, being occupied with hobbies such as driving, reading and writing.
“I have an automatic car which was adapted to my limitations and I love to drive and explore the beautiful places around the country. I also have five nieces and nephews and I live the most I can with them. I try to create beautiful memories to show them how life should be lived and so they never remember me as the the ill uncle,’’ he says.
Although Antunes still lives with his parents in a rural area of Portugal, since age two he has spent much time in the capital to receive treatment for his condition. “My disability has also been a blessing in some aspects. Being in Lisbon opened my mind to a huge amount of information and different life experiences,’’ says Antunes.
“At the hospital, I started learning a lot of medical terms with the nurses and doctors. I asked a lot of questions. The doctors used to tell my parents: ‘he is phenomenal, he asks a lot of difficult questions’. I was very curious.’’
At the age of 10, Antunes was introduced to a new medical procedure that has been never explained to him previously – euthanasia. He remembers the moment clearly.
‘‘I watched a documentary on Discovery channel about euthanasia and from that moment on I was hooked, I wanted to learn everything about, and how it could help me,’’ he says.
“This may not be a normal interest of a 10-year child but I was different because I knew I was living with a disease which was only getting worse.”
After many years of research, Antunes is sure euthanasia will be his best option when his body can’t handle more pain, something not everyone can understand, he says
“I thought a lot about it, for many years, I measured the pros and cons, I’m conscious that my death will cause a lot of suffering to my family but it’s inevitable. When someone dies you can grieve and try to move on. But when I’m in the hospital I know everyone suffers with me. Prolonging this suffering, when we know I won’t get any better, that’s torture,’’ he says.
Although his older sisters who he considers his most supportive people, accepted his decision, his religious parents were and remain strongly against it.
“Ohhh…it was so bad for them. My parents believe God has the final say with everything and I understand because I grew up as a Catholic. I don’t believe in God anymore because… I prayed a lot, and it didn’t change anything… But I understand my parents,’’ says Antunes.
“What I try to do is make sure they know I’m only getting worse. From last year to now, I have lost the ability to do some movements, I’ve lost strength, I have more pain, I’ve had crises more often.’’
‘‘They know that at one point I will be living in a hospital bed, completely unable to move, so when that time comes, I want to be able to decide on my own death.’’
At the moment, Antunes would need to travel from Portugal to a European country permitting euthanasia for terminal patients. However in February 2020, an extraordinary shift happened and for the first time, the Portuguese Parliament voted in favour to decriminalize assisted suicide under some conditions. But since then, the Constitutional Court has ruled the new law as ‘unconstitutional’ claiming it was too ‘vague.’ However, the court left the door open for the parties involved to agree on more specific conditions under which one can decide to end their own life.
Although this may sound like bad news, Antunes believes this last year has been crucial to winning public opinion.
On a viral Facebook post, which led to several invitations for national television appearances and interviews, Antunes wrote: “I enjoy watching people who don’t have any health problem or diseases, making pro-life protests. How can you represent me if you have never been through the pain I go through every day? How can you know how it feels to spend days, weeks and months stuck in a hospital bed where the only thing that sticks with you is the pain and suffering?”
He has also written a letter to the Portuguese President asking for a meeting, which has been declined.
“On that same day, I saw him on tv discussing euthanasia with religious leaders which I simply don’t understand. Those people will probably never need to use it, but I will! They can easily be against it because they won’t be the ones at the hospital bed with pain all over their bodies,’’ says Antunes.
Antunes will continue to advocate for what he believes is his right: deciding the terms of his death.
“Euthanasia is the last free choice that a suffering person deserves. It’s our only chance to die under our conditions, when we are still able to say goodbye to our families,’’ he says poignantly.
“I imagined the day of my death many times. I’m always at a big party with all my family, I take the pills in the middle of the party and fall asleep… So people see me asleep and think I was just tired, nobody notices that I’m going away.’’