Daniel Eduardo Ostropolsky has been staring into the abyss for years. At first he noticed the changes in his body gradually, week by week: a sudden cramp, weakness in his right hand or some slowness in moving. Now he experiences what, in a very calm voice, he describes as “crumbling.”
“Everything starts to fail. The muscles start with all kinds of pains and difficulties,” he said by video call from his studio in Mendoza, Argentina.
Ostropolsky was diagnosed four years ago with amyotrophic lateral sclerosis, or ALS, a progressive, terminal neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It’s estimated that ALS affects 5 out of 100,000 people worldwide, and there is no cure. It is known as Lou Gehrig’s disease for the New York Yankees legend who was diagnosed with the disease over eighty years ago.
ALS kills motor cells, Ostropolsky said with a veiled smile. Without those cells, the brain slowly loses the ability to move muscles.
“Asphyxia is a sensation that begins to accompany the patient who suffers from this disease. No device, invasive or not, and no operation of nature calms this feeling of suffocation," Ostropolsky, 72, said amid snorts and fatigue.
Ostropolsky, an experienced lawyer, filters everything through the law and jurisprudence — that is his way of facing the abyss. On May 30, he wrote a long statement on his Facebook account to draw the attention of Argentine lawmakers and the international community to the urgent need to approve a euthanasia law in his country.
Ostropolsky said the lack of such a law is an offense to the human condition, because he and many other people with serious illnesses sooner or later will be reduced to states of “permanent pain and without hope of relief or improvement.”
“We are sentenced to death ... in life,” he wrote.
The recent case in Colombia of Martha Sepúlveda Campo, another ALS sufferer whose euthanasia procedure was canceled at the last minute — has renewed the debate in Latin America. There are already bills in Chile, Uruguay and Argentina to decriminalize the procedure, which causes the death of a patient by choice through the administration of drugs or lethal substances.
Worldwide, euthanasia is legal in seven countries: Belgium, Luxembourg, Canada, New Zealand, Spain, the Netherlands and Colombia.
People with incurable diseases like Ostropolsky and Sepúlveda say they love life but warn that their existences are sinking into a spiral of limitations that robs them of dignity and exposes them to excruciating pain.
“A law is going to put a mantle of mercy on those who find themselves in a dire situation, without any hope whatsoever. Not to do so is to prolong the suffering that accompanies a very unjust agony,” Ostropolsky said.
Colombia, the region's only exception
In 1997, Colombia became the first country in Latin America to decriminalize euthanasia. According to data from the Health Ministry, 157 procedures have been performed since then.
Until this year, euthanasia was permitted only in cases of terminal illnesses with life expectancies of six months or less. However, the Constitutional Court expanded the right to seek the procedure in July, allowing it “whenever the patient suffers intense physical or psychological suffering, resulting from bodily injury or serious and incurable illness.”
After the ruling, Sepúlveda requested permission for a dignified death, which was granted Aug. 6. Her relatives and her legal team have described the last-minute cancellation as “illegitimate and arbitrary.” They have filed an appeal.
Adriana González, an attorney in the country’s first legal euthanasia case, said the last-minute cancellation was “an act of torture.”
The process in Argentina
In 2012, the Argentine Senate passed a law authorizing the refusal of treatments that artificially prolong the lives of patients with terminal or irreversible symptoms. Since 2015, a modification of the Civil Code allows people to formulate advance directives; that is, they are able to allow or refuse certain medical treatments, preventive or palliative, including authorizing another person to make healthcare decisions if they’re incapacitated.
While euthanasia is illegal, a bill is being prepared to regulate “the provision of assistance to die with dignity.”
It is known as the Alfonso Law, in homage to Alfonso Oliva, 36, who died in 2019 and who, like Ostropolsky and Sepúlveda, suffered from ALS.
For more than 40 years, Dr. Carlos Soriano, a physician and bioethicist, has worked in intensive care wards where he has seen it all — from amazing cures on the edge of rational explanation to slow recoveries and failed suicides by people who will do anything to try to end their suffering.
“The absence of a euthanasia law pushes many patients into a corner, between a rock and a hard place, so they buy a gun, a box of phenobarbital or some ant poison, and the worst thing is that sometimes they are left alive with much more terrible suffering,” Soriano said in a categorical tone.
He can’t forget his first encounter with Oliva in 2019. By then, Oliva no longer spoke: He used a wheelchair and communicate through computer software by blinking his eyes. It was an exasperatingly slow way to speak, but he had focused all his lucidity to prepare a letter, along with his attorney, in which he advocated euthanasia.
“His life was like a nightmare but in reverse: At night he dreamed he was running, flying, making love. But when he woke up he was living this cruel nightmare with a terrible existential suffering,” said Soriano, who recalled that after he met Oliva, he embraced his relatives and burst into sobs.
When Soriano asked him what he missed most, Oliva didn’t hesitate and said eating. He had been feeding himself for years with a tube that went directly into his stomach.
“This very natural thing of putting a loaf of bread in his mouth or eating a bowl of soup, he couldn’t do it. These are practically intangible sufferings that many people don’t understand. But it is precisely the people who don’t live through that who decide whether these patients can decide how to die. It’s crazy,” Soriano said.
“Choosing how to die has to be a right of life” is a sentiment Oliva’s relatives often repeat in interviews. It is like a mantra that Soriano, who advises the legislation’s team, also remembers.
Soriano has his own advance directive application ready. At 68, he doesn’t want unforeseen events to overshadow his family members’ lives.
“I have it at home, and I gave it to my family. These things have to be discussed in advance to avoid controversy and suffering. If you put it in writing, there is no more discussion possible. But there are people who cannot make this request, which is terrible. That is why we must have a euthanasia law,” he said.
Chile, one step away
In Chile, where terminally ill patients have been able to refuse treatment since 2012, the Senate is debating a bill about euthanasia and dignified death that has already been approved in the Chamber of Deputies.
In a session of the Health Commission on Aug. 31, senators listened to a woman with a deep gaze who spoke about the torture she lives with daily and the right to die that she demands from legislators.
“I decided that euthanasia would be for me. I don’t have the courage to commit suicide, but the pains I have should not be for anyone. That is why I am asking for a euthanasia law, not a good death. I don’t want palliative sedation. I want a safe death,” said the woman, Cecilia Heyder, a Chilean social activist.
Heyder, 55, has suffered several health complications that torment her and led her to use a wheelchair. In addition to metastatic cancer and lupus, since 2019 she has suffered from a blood disorder that forces her to undergo plasma transfusions every week.
“It is a savage cruelty, it is torture to be aware that your body no longer responds, and because I am not in a semi-unconscious or unconscious state, I have no right to euthanasia. ... My joints tear inside and swell. The pain is horrifying,” Heyder said. She has three indwelling catheters and is given morphine every six hours.
The bill, which was introduced in 2014 by center-left lawmakers, would establish a legal framework for terminally ill patients to decide when their lives will end. The measure would establish that only people over 18 who “have an incurable, irreversible and progressive disease, without the possibility of responding to curative treatments and with a limited life prognosis, will be able to enjoy this right.”
Euthanasia is going to be my last battle, because I desperately need it.
Cecilia HeydeR, euthanasia activist
Heyder has waged a legal battle for the law because she hopes it passes before she dies. In 2006 and 2011, before she became ill, she had already supported several euthanasia bills that failed.
“I have been in the streets for more than 30 years fighting for truth, justice and against impunity. My father was executed by [Augusto] Pinochet's bloody military dictatorship, and I have fought all my life for causes such as free abortion, medical and recreational marijuana, and I also supported euthanasia, but I never thought I was going to need it,” she said. “Euthanasia is going to be my last battle, because I desperately need it.”
Still waiting in Mexico
Euthanasia and assisted suicide are illegal in Mexico. In 2008, the Advance Directive Law was passed in the state of Mexico City, allowing people to decide, in the case of terminal illness, whether to continue with medical treatments that prolong their lives (such as respirators, artificial feeding, operations and other methods).
More than 10,000 people have signed the advance directive, but because it isn’t a federal law, it’s allowed only in Mexico City and 13 states.
A 2016 survey by the Association for the Right to Die with Dignity found that 68 percent of adults who were surveyed in Mexico agreed that people with painful illnesses and in terminal phases should be able to decide whether they want to die. In addition, a survey by the Public Opinion Center of the Universidad del Valle de México last year found that 72 percent of people believe euthanasia should be legalized.
“We do not have euthanasia, which, in my opinion, is an indispensable means for someone who’s reached the limit of wanting to continue living due to their illness, to be able to ask for help and receive it from a specialist, without having to be clandestine and put anyone at risk,” said Asunción Álvarez del Río, a professor of bioethics at the National Autonomous University of Mexico.
“It’s about having a good death, without any pain,” she said.
Álvarez del Río, 64, has an advanced health care directive and is emphatic when she explains her reasons.
“I am aware that I have the possibility of losing the capacity to decide from one moment to the next, and it is clear to me that there are conditions in which I would not want to live, even if I am no longer aware of it or if I am completely unconscious in a vegetative state,” she said. “When I think about the possibility of being like this, it seems important to me to avoid it.”
‘Who’s going to protect me from cruel and unjust suffering?’
Although Peruvian law prohibits euthanasia, in February a court ruled in favor of a request by Ana Estrada, 44, a psychologist who has suffered from a degenerative disease for three decades and claims a right to euthanasia.
Estrada suffers from polymyositis, a degenerative and incurable disease that chronically weakens her muscles. In 2015, it began to affect her respiratory muscles, so she underwent a tracheostomy and a gastrostomy (she has tubes in her trachea and her stomach for breathing and eating), and she was left in the constant care of nurses.
“My body is failing, but my mind and spirit are happy. I want the last moment of my life to continue to be like this, in freedom, with peace, tranquility and autonomy. I want to be remembered like this,” Estrada said in an interview shortly after the decision authorizing her euthanasia procedure.
However, Estrada’s case hasn’t yet been resolved. In May, it was elevated to the Supreme Court, which could ratify the February ruling or review the case.
In the meantime, Estrada, like many other patients in Latin America, continues to wait.
In Uruguay, a law known as the advance directives or good death law also regulates patients’ freedom to refuse treatment, including palliative care, to hasten their final outcomes.
As in other countries, a bill on euthanasia is in the works to allow medical personnel to bring about the death of a person who is “of legal age, mentally fit and ill with a terminal, irreversible and incurable pathology.”
Florencia Salgueiro, an activist and member of Empatía Uruguay, an organization that promotes the decriminalization of euthanasia, said the discussion is crucial for the future, because she saw how her grandfather, her uncle and her father succumbed to the ravages of ALS — without being able to do anything about it.
“What I want for myself, and for all people, is to have autonomy over my body. That is to say, the decision to live until the last possible second and leaving early a possibility that is in my hands, because today that does not exist,” she said.
A survey by the Uruguayan Medical Union in May 2020 found that 82 percent of people are in favor of euthanasia and 62 percent are in favor of assisted suicide.
“There is a great opportunity, because 82 percent of Uruguayans do not agree on anything, not even on soccer. This is the moment,” Salgueiro said.
Other countries in the region have developed similar legislation that contemplates euthanasia, but the bills haven’t been approved, as in El Salvador and Venezuela.
Latin American countries, in general, have mostly Roman Catholic populations, which influence the resistance to pro-euthanasia bills, experts said.
Soriano said, “Religion should be respected as any other type of belief, but it cannot be the only argument, because what do we do with those Catholics who want to die with dignity or with atheists or people of other religions who do not agree that life belongs to God and that only God can take it away?”
While the debates continue, patients like Ostropolsky spend their days making the most of the pleasures they can enjoy, such as the aroma of a favorite dish or the delicate harmony of a musical movement.
He said that, in spite of everything, he still has a sense of humor.
A few days ago, he accompanied his daughter to the garden. While she was transplanting some pots, she was talking on the phone and asked someone to bring her some bags of soil. Ostropolsky interrupted her, laughing, and said: “Not yet, daughter. Wait until I’m a little worse.”
He gets serious when he talks about his last days. “I think the law will exist. If that doesn’t happen, who is going to protect me from so much unjust and cruel suffering?” he said.
An earlier version of this story was originally published in Noticias Telemundo.
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