It was Friday night, Oct. 8. Martha Sepúlveda had 36 hours to live after she was approved to die by euthanasia, a decision that would allow her to rest from a painful illness, as well as make history in Colombia and the rest of the region.
But her plans were changed the next day: In a letter, the health center where the procedure was scheduled to have taken place announced in writing that it had been canceled.
The health center's statement didn’t include a reason for the decision or the names of the doctors who made the call. Sepúlveda was left in “a hopeless and sad state,” her son told the local media the next morning — the same morning she had been scheduled to die.
The family has appealed to the courts, but in the meantime, there are questions about whether media exposure in the heavily Catholic country played a role in the last-minute reversal.
An incurable disease, a nonterminal diagnosis
Sepúlveda, 51, who is Roman Catholic, was diagnosed in 2019 with amyotrophic lateral sclerosis, or ALS, a severe, incurable and terminal neuromuscular brain disease. ALS causes the progressive death of motor neurons, and the muscles consequently progressively lose their functioning.
“In a fairly rapid period of time, people with ALS tend to lose the ability to speak, swallow, move and breathe,” said Fred Fisher, the president and CEO of the U.S.-based ALS Association Golden West Chapter. Some patients live for months or decades, but in most cases, the progression is, on average, two to five years from diagnosis to death.
Sepúlveda told her doctor that she wanted to undergo euthanasia in March.
Colombia, a pioneer in the right to a dignified death in Latin America, decriminalized euthanasia in 1997, but only when a person has a prognosis of near-death or a life expectancy of six months or less — which wasn’t the case with Sepúlveda.
On July 22, Sepúlveda got good news: The Colombian Constitutional Court issued a ruling expanding access to euthanasia to patients who “suffer intense physical or mental suffering, stemming from bodily injury or serious and incurable disease.” Sepúlveda had the opportunity to make her case.
The justification for the judicial decision was based on respect for human dignity. “A person cannot be forced to continue living, when he suffers from a serious and incurable disease that causes intense suffering, and has made the autonomous decision to end his existence in the face of conditions that he considers incompatible with his conception of a dignified life,” the ruling said.
In less than a month, Sepúlveda requested authorization to undergo euthanasia under the new guidelines, and it was granted. Since Aug. 6, she said, she has breathed easier and laughed more, because she knew she would finally have the chance to end her pain. “In the state that I'm in, the best thing that can happen to me is to rest,” she said in an interview with Colombia's Caracol network.
As her ALS has progressed, Sepúlveda can't walk without assistance, and she is in intense pain. “She requires assistance to dress, shower and for intimate hygiene,” according to the most recent medical report released by Caracol, dated Oct. 6.
Federico Redondo, her son, has witnessed his mother’s suffering and has supported her decision. “It diminishes your dignity — you are not living. You're surviving," he recently told Colombia's La W radio.
But experts say that the disease doesn’t have the same progression in all cases and that it's difficult to establish a fixed prognosis.
“It does not affect everyone in the same way,” said Fisher, who said there are resources to mitigate symptoms. “Our goal is not to help people die from ALS but to help people live with it — it's about helping them to live fully beyond the state of the disease or its progression."
"It is not up to us to intervene in what is the most personal of the choices that there can be," he said.
Did media exposure doom her planned death?
Sepúlveda was happy to be the first patient in Colombia without a terminal prognosis to be allowed to undergo euthanasia. Her 11 siblings support her. Sepúlveda's mother said she respected her decision, although she wouldn't do it if she were in her position.
The priests at her church asked over and over why she wanted to do it.
“God does not want to see me suffer," Sepúlveda said when she was questioned about the possible contradiction with the Roman Catholic belief that people shouldn't decide about life, only God.
Sepúlveda said she had no doubts about her faith and was “totally calm” about the prospect of dying. She said she even decided to die on a Sunday because it is the day to “go to church, to mass.”
“I know that the owner of life is God, yes. But I’m suffering, and I believe in a God who doesn’t want to see me like this. In fact, for me he is allowing it,” she said in the television interview that could have changed the course of her case.
The report was broadcast on Sunday, Oct. 3, and in a matter of hours, Sepúlveda’s story and the ensuing debate had spread to social networks and other media. According to the Pew Research Center, about 80 percent of Colombians are Catholic.
The same week, the Colombian Episcopal Conference called for a national prayer chain for Sepúlveda, describing euthanasia as “homicide” and leaving a message for her.
“I invite you to calmly reflect on your decision,” Monsignor Francisco Antonio Ceballos Escobar said in a statement days after Sepúlveda's televised interview.
Her position didn’t change, despite the uproar in the media. Neither did the questions from her church.
“We respect that from the religious sector they are invited to reflect. Indeed, we respect that someone believes that whoever practices euthanasia is going to be condemned to hell — as funny as it sounds, people have the right to think that and say it,” Sepúlveda's son said in an interview with La W radio.
Even though it is a majority Catholic country, there is high approval for dignified death in Colombia: More than 72 percent of those surveyed in an opinion poll agreed with euthanasia.
‘They erased her smile’
Freddy Quintero, the manager of the Instituto Colombiano del Dolor, where the euthanasia procedure was to have taken place, denied that the Health Ministry or religious entities influenced the determination and emphasized that experts can review and reverse cases. “The decision of the medical committee was autonomous,” he told La W radio.
However, the medical committee took into account a factor that didn’t exist when Sepúlveda was authorized to undergo euthanasia on Aug. 6: images of her smiling and celebrating on television.
That may have changed her chances to die.
“What is paradoxical and inhumane about this episode is that Doña Martha requested the right to a dignified death and received with joy the authorization of euthanasia and the end of her suffering,” said Jaime Córdoba Triviño, a former magistrate of the Constitutional Court. But then, “in a surprise letter, they erased her smile and the design of her own will with a stroke of the pen.”
The medical panel members' decision, based in part on the Martha Sepúlveda they saw on screen, reversed the right they had given her.
But capturing a person in a moment of joy and satisfaction doesn’t give a complete picture of what patients with ALS experience in their daily lives, experts said.
“It does not necessarily mean that they are not also devastated by their diagnosis and that they are not afraid of what will come next,” Fisher said.
Sepúlveda’s family and attorneys said the cancellation was “illegitimate and arbitrary.” They are appealing before a judge, saying her rights were violated.
“It should be a simple procedure, full of love and tranquility in the company of her family,” Lucas Correa Montoya of the Laboratory of Economic, Social and Cultural Rights, one of her legal representatives, told Noticias Telemundo. “But it has become a violation of fundamental rights by the Colombian health system."
The medical committee that reversed the euthanasia decision ruled that Sepúlveda doesn’t meet the “termination criterion.” But her attorneys say she requested euthanasia under the court’s most recent decision, which removed the requirement for a terminal prognosis.
The burden of ‘the first case’
Adriana González, a lawyer, said Sepúlveda carries the burden of being “the first case.”
González was in charge of the first legal euthanasia case in Colombia, in 2015. Ovidio González Correa, 79, was deformed by a tumor in his face and suffered from trigeminal neuralgia, also called suicidal disease, because of the intense pain it causes.
González Correa’s case, which wasn’t as high-profile even though he was the father of a famous cartoonist, has some similarities to Sepúlveda’s. It was also canceled after it was approved — in his case just 20 minutes before he got to the medical center for the procedure.
Even though González Correa was affected by his disease, his attorney said that, as with Sepúlveda, he had an expression of joy in his eyes — which disappeared when he got the news that his procedure had been canceled.
González said it is normal for a health entity to review a decision for fear of legal problems. But it isn’t normal to cancel it at the last minute.
"That is the unusual thing about these situations,” she said. To tell patients that they can undergo euthanasia and then cancel a day before or a half-hour before, "that is an act of torture."
González Correa was finally granted euthanasia after he appealed — the same action that Sepúlveda’s attorneys have initiated. A resolution is expected in the next few days.
“We are going to continue fighting for the dignity of my mother,” Sepúlveda's son said, adding that she takes everything, even the setback, with the best attitude and "has always been a very strong woman."