Chilean woman with muscular dystrophy becomes face of euthanasia debate as bill stalls in Senate
As a child, Susana Moreira didn’t have the same energy as her siblings. Over time, her legs stopped walking and she lost the ability to bathe and take care of herself. Over the last two decades, the 41-year-old Chilean has spent her days bedridden, suffering from degenerative muscular dystrophy. When she finally loses her ability to speak or her lungs fail, she wants to be able to opt for euthanasia — which is currently prohibited in Chile.
Moreira has become the public face of Chile’s decade-long debate over euthanasia and assisted dying, a bill that the left-wing government of President Gabriel Boric has pledged to address in his last year in power, a critical period for its approval ahead of November’s presidential election.
“This disease will progress, and I will reach a point where I won’t be able to communicate,” Moreira told The Associated Press from the house where she lives with her husband in southern Santiago. “When the time comes, I need the euthanasia bill to be a law.”
A debate spanning more than 10 years
In April 2021, Chile’s Chamber of Deputies approved a bill to allow euthanasia and assisted suicide for those over 18 who suffer from a terminal or “serious and incurable” illness. But it has since been stalled in the Senate.
The initiative seeks to regulate euthanasia, in which a doctor administers a drug that causes death, and assisted suicide, in which a doctor provides a lethal substance that the patients take themselves.
If the bill passes, Chile will join a select group of countries that allow both euthanasia and assisted suicide, including the Netherlands, Belgium, Canada, Spain and Australia.
It would also make Chile the third Latin American country to rule on the matter, following Colombia’s established regulations and Ecuador’s recent decriminalization, which remains unimplemented due to a lack of regulation.
‘As long as my body allows me’
When she was 8 years old, Moreira was diagnosed with shoulder-girdle muscular dystrophy, a progressive genetic disease that affects all her muscles and causes difficulty breathing, swallowing and extreme weakness.
Confined to bed, she spends her days playing video games, reading and watching Harry Potter movies. Outings are rare and require preparation, as the intense pain only allows her three or four hours in the wheelchair. As the disease progressed, she said she felt the “urgency” to speak out in order to advance the discussion in Congress.
“I don’t want to live plugged into machines, I don’t want a tracheostomy, I don’t want a feeding tube, I don’t want a ventilator to breathe. I want to live as long as my body allows me,” she said.
In a letter to President Boric last year, Moreira revealed her condition, detailed her daily struggles and asked him to authorize her euthanasia.
Boric made Moreira’s letter public to Congress in June and announced that passing the euthanasia bill would be a priority in his final year in office. “Passing this law is an act of empathy, responsibility and respect,” he said.
