Chilean woman with muscular dystrophy becomes face of euthanasia debate
as bill stalls in Senate
[May 03, 2025]
By NAYARA BATSCHKE
SANTIAGO, Chile (AP) — 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.
But 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 change in mood
Chile, a country of roughly 19 million inhabitants at the southern tip
of the southern hemisphere, began to debate euthanasia more than ten
years ago. Despite a predominantly Catholic population and the strong
influence of the Church at the time, Representative Vlado Mirosevic,
from Chile's Liberal Party, first presented a bill for euthanasia and
assisted dying in 2014.
[to top of second column]
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Susana Moreira, 41, a degenerative muscular dystrophy patient, looks
at her husband in her bedroom in Santiago, Chile, Thursday, April
10, 2025. (AP Photo/Esteban Felix)
 The proposal was met with skepticism
and strong resistance. Over the years, the bill underwent numerous
modifications with little significant progress until 2021. “Chile
was then one of the most conservative countries in Latin America,”
Mirosevic told the AP.
More recently, however, Chilean public opinion has shifted, showing
greater openness to debating thorny issues. “There was a change in
the mood, and today there is a scenario where we have an absolute
major support (of the population) for the euthanasia bill,”
Mirosevic added.
Indeed, recent surveys show strong public support for euthanasia and
assisted dying in Chile.
According to a 2024 survey by Chilean public opinion pollster Cadem,
75% of those interviewed said they supported euthanasia, while a
study by the Center for Public Studies from October found that 89%
of Chileans believe euthanasia should “always be allowed” or
“allowed in special cases,” compared to 11% who believed the
procedure "should never be allowed.”
Suffering, ‘the only certainty’
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-President Michelle Bachelet for
euthanasia. Her request was denied, and she died less than two
months later from complications of cystic fibrosis.
The commotion generated both inside and outside Chile by her story
allowed the debate on assisted death to penetrate also into the
social sphere.
“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," said Maureira.
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,” Irene
Muñoz Pino, a nurse, academic and advisor to the Chilean Scientific
Society of Palliative Nursing, said. She was referring to a recent
law, enacted in 2022, that ensures palliative care and protects the
rights of terminally ill individuals.
Others argue 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,” said Colombian
psychologist Monica Giraldo.
With only a few months remaining, Chile’s leftist government faces a
narrow window to pass the euthanasia bill before the November
presidential elections dominate the political agenda.
“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."
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