As a child, Susana Moreira did not 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 past two decades, the 41-year-old Chilean has spent her days bedridden due to 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 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 Chilean 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.
Photo: AP
“This disease will progress, and I will reach a point where I won’t be able to communicate,” Moreira said at the house where she lives with her husband in southern Santiago. “When the time comes, I need the euthanasia bill to be a law.”
LONG-TIME ISSUE
In April 2021, the Chamber of Deputies of Chile approved a bill to allow euthanasia and assisted suicide for those older than 18 who have a terminal or “serious and incurable” illness. However, it has since been stalled in the Chilean 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.
CALL FOR HELP
When she was eight 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 Boric last year, Moreira revealed her condition, detailed her daily struggles and asked him to authorize her euthanasia.
He made her letter public to congress and announced that passing the euthanasia bill would be a priority in his final year in office. However, hope soon gave way to uncertainty. Almost a year after that announcement, multiple political upheavals have relegated Boric’s promised social agenda to the background.
“A sick person isn’t certain of anything; the only certainty they have is that they will suffer,” Moreira said. “Knowing that I have the opportunity to choose, gives me peace of mind.”
MOOD CHANGE
Chile began to debate euthanasia more than 10 years ago. Despite being a predominantly Catholic population and the strong influence of the Church at the time, Chilean Representative Vlado Mirosevic presented a bill for euthanasia and assisted dying in 2014.
The proposal was met with skepticism and strong resistance. Over the years, the bill underwent numerous modifications with little significant progress until 2021.
However, Chilean public opinion has shifted, showing greater openness to debating thorny issues.
Recent surveys show strong public support for euthanasia and assisted dying in Chile.
According to a survey by Cadem last year, 75 percent of those interviewed said they supported euthanasia, while a study by the Center for Public Studies from October found that 89 percent of Chileans believe euthanasia should “always be allowed” or “allowed in special cases,” compared with 11 percent who believed the procedure “should never be allowed.”
RIGHT TO CHOOSE
Boric’s commitment to the euthanasia bill has been welcomed by patients and families of those lost to terminal illnesses, including Fredy Maureira, a decade-long advocate for the right of choosing when to die.
His 14-year-old daughter Valentina went viral in 2015 after posting a video appealing to then-Chilean president Michelle Bachelet for euthanasia. Her request was denied, and she died less than two months later from complications of cystic fibrosis.
“I addressed Congress several times, asking lawmakers to put themselves in the shoes of someone whose child or sibling is pleading to die, and there’s no law to allow it,” Maureira said.
Despite growing public support, euthanasia and assisted death remains a contentious issue in Chile, including among health professionals.
“Only when all palliative care coverage is available and accessible, will it be time to sit down and discuss the euthanasia law,” said Irene Munoz Pino, a nurse, academic and adviser to the Chilean Scientific Society of Palliative Nursing.
She was referring to a law enacted in 2022 that ensures palliative care and protects the rights of terminally ill individuals.
Others said that the absence of a legal medical option for assisted dying could lead patients to seek other riskier, unsupervised alternatives.
“Unfortunately, I keep hearing about suicides that could have been instances of medically assisted death or euthanasia,” psychologist Monica Giraldo said.
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