Daniel Eduardo Ostropolsky has been looking into the abyss for years.
At first he noticed the changes in his body gradually, week by week;
a sudden cramp, weakness in the right hand or some slowness when moving.
Now he experiences what, in a very calm voice, he describes as a "breakdown."
"Everything starts to fail, the muscles start with all kinds of pains and difficulties," he tells by phone from his studio in Mendoza, Argentina.
Ostropolsky was diagnosed four years ago with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
ALS kills motor cells, says Ostropolsky with a veiled smile.
And without these cells, the brain slowly loses the ability to generate muscle movements.
Why was the euthanasia of the Colombian Martha Sepúlveda canceled?
Oct. 11, 202102: 56
“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 that calms this feeling of suffocation, ”says Ostropolsky, 72, between snorts and fatigue.
While the body sinks, his brain continues to fly: he says that he takes every moment of pleasure out of music, reading and the luminous sunrises of his region: “The diagnosis so far redefines the value of life and amplifies the beauty and the will to live.
But that desire, that beauty, will be tarnished if you do not leave life with the same dignity and elegance with which you have lived ”.
Ostropolsky is a law man, an experienced lawyer who filters everything through 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 legislators, and the entire world, to the urgent need for a euthanasia law to be approved.
In his words, the absence of that law is an offense to the human condition because, both he and many other people with serious illnesses, sooner or later will be reduced to a state of "permanent pain and without hope of relief or improvement."
"We are sentenced to death ... in life," he laments.
Martha Sepúlveda's family claims to be willing to continue fighting to obtain the euthanasia of the Colombian
Oct. 10, 202102: 49
It is estimated that ALS affects 5 out of 100,000 people worldwide and, as of now, there is no cure.
It is known as Lou Gehrig's disease, a New York Yankees baseball player diagnosed in 1937.
It was suffered by Stephen Hawking, the famous British physicist.
And it is also the disease suffered by Martha Sepúlveda Campo, the Colombian who on October 9 was going to undergo a euthanasia procedure that was canceled at the last minute because a medical committee ruled that she does not meet the "termination criteria."
Sepúlveda requested the procedure in accordance with a recent decision of the Colombian Constitutional Court that this year eliminated the requirement to have a terminal prognosis.
“
God does not want to see me suffer, I believe that no one.
No father wants to see his children suffer
(…) 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, ”Sepúlveda, 51, a practicing Catholic, said in an interview with Noticias Caracol.
[Denying a dignified death to Martha Sepúlveda is "disrespectful" and "illegal": the family of the Colombian woman who asks to die reacts]
His case has prompted the debate on euthanasia in the region, where in various countries (such as Chile, Uruguay and Argentina) there are already bills that seek to decriminalize the procedure.
Worldwide,
euthanasia is legal in seven countries: Belgium, Luxembourg, Canada, New Zealand, Spain, the Netherlands, and Colombia.
The term euthanasia comes from the Greek
euthanasia
, formed by the prefix
eu
(which is equivalent to good, sweet) and the word
thánatos
(death), so its meaning would be the good death, sweet death, or easy death.
In both classical Greece and Rome it was a common practice and various philosophers wrote about it.
"It is preferable to take your life, to a life without meaning and suffering," Seneca reflected in the
Epistles to Lucilio
.
Currently, it
consists of causing the death of a patient by choice through the administration of drugs
or lethal substances.
Euthanasia is not synonymous with medically assisted suicide.
In general, in the case of medically assisted suicide,
the doctor provides the patient with the information or medication necessary to interrupt his life
by his own hand.
Terminally ill or chronically ill patients can fall into a situation of medical fury or therapeutic cruelty.
These terms apply when you continue to administer treatments that, according to medical data, are useless, in the hope of achieving some improvement.
In contrast, palliative care seeks to improve the quality of life of patients when they are facing life-threatening situations, with
treatments for pain and other
physical or psychological
problems
.
People with incurable diseases like Ostropolsky and Sepúlveda say they love life but warn that their lives are sinking into a spiral of limitations that takes away their dignity and exposes them to excruciating pain.
“A law will put a cloak of mercy on those who find themselves in dire situations, without any hope.
N
or doing so is prolonging the suffering that accompanies a very unjust agony
, "explains Ostropolsky.
Her name is Martha, she is 51 years old and she is celebrating that on Sunday she will die: they will euthanize her
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Colombia, the only exception in the region
In 1997, Colombia became the first country in Latin America to decriminalize euthanasia.
According to data from his Ministry of Health,
157 procedures have been performed
since then
.
Until this year it was only allowed in cases of illnesses with terminal diagnoses and a life expectancy of six months or less.
However, the Colombian Constitutional Court expanded that right in July, allowing the procedure "provided that the patient suffers intense physical or mental suffering from bodily injury or serious and incurable disease."
Four days later, Martha Sepúlveda requested permission to have a dignified death, which was granted on August 6.
"I am calmer since the procedure was authorized, I laugh more, I sleep more calmly," she said at the time.
Her relatives and the legal team that advises her
have described the cancellation of euthanasia as “illegitimate and arbitrary”.
And they have already taken action in this regard: they presented a guardianship to ask a judge for protection against the violation of a right.
"It should be a simple procedure, full of love and tranquility in the company of his family," said Lucas Correa Montoya, one of his legal representatives in conversation with Noticias Telemundo.
[He celebrated his death, but was denied it at the last minute: what happened to Martha Sepúlveda and the euthanasia that was not]
Adriana González, a Colombian lawyer who in 2015 was in charge of the case of the first legal euthanasia in Colombia, explains that it is normal for health entities to review a decision for fear of legal problems.
"Now, cancel it at the last minute, no: that is the unusual thing about these situations," he remarks in an interview with Noticias Telemundo.
"Submit a patient and say yes, we are going to euthanize him and a day before or half an hour before
they tell him that they are not going to apply it, that is an act of torture,
" he insists.
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In Mexico it has not yet arrived
Euthanasia and assisted suicide are illegal in Mexico, but in 2008 the Advance Willing Law was passed, allowing citizens to decide, in the event of a terminal illness, whether or not they want to continue with life-prolonging medical treatments ( with respirators, artificial feeding, operations and other methods).
More than 10,000 people have signed the advance directive,
but since it is not a federal law it is only allowed in Mexico City and 13 states.
A survey carried out in 2016 by the Association for the Right to Die with Dignity revealed that 68% of the adults consulted consider that a person with a painful illness, and in a terminal phase, should be able to decide if they want to die.
In addition, a consultation carried out by the Public Opinion Center of the Universidad del Valle de México in 2020 showed that
72% of citizens consider that euthanasia should be legalized.
“But we do not have euthanasia, which, in my opinion, is an essential means so that when someone reaches the limit of what they want to continue living due to their disease, they can ask for help to die and receive it from a specialist without having to be clandestine and without putting anyone at risk, "explains Asunción Álvarez del Río, a professor at the National Autonomous University of Mexico.
"It's about having a good death, without any pain,
" he says.
Álvarez del Río, 64, has already made his request and is emphatic when explaining his reasons.
“I am aware that I have the possibility of losing the ability to decide from one moment to the next and it is clear to me that there are conditions that I would not want to live in, even if I no longer realize it or if I am completely unconscious in a vegetative state.
When thinking about the possibility of being like this, it seems important to avoid it
”, asserts this doctor in bioethics.
Judge authorizes euthanasia for a psychologist with an incurable disease in Peru
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The process in Argentina
In 2012, the Argentine Senate approved a law authorizing the refusal of treatments that artificially prolong the life 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 reject certain medical, preventive or palliative treatments,
and decisions related to their health.
Euthanasia is illegal, although a bill is being prepared that seeks to regulate “the provision of aid to die with dignity”.
It is known as the Alfonso Law, in tribute to Alfonso Oliva, a 36-year-old man who died in 2019 and who, like Ostropolsky and Sepúlveda, also suffered from ALS.
For more than 40 years, Carlos Soriano has worked in intensive care rooms where he has seen it all.
From surprising healings, on the edge of rational explanations, to slow recoveries and failed suicides of people who do anything to try to end their suffering.
"
The absence of a euthanasia law pushes many patients to find themselves cornered, 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 living with much more terrible suffering ”, this doctor and specialist in bioethics warns in a categorical tone.
Although he claims to have seen it all, he cannot forget his first meeting with Oliva in 2019. By then, the man was no longer talking: he was confined to a wheelchair and used computer software to blink.
It was an infuriating way of speaking because of the slowness, but he had focused all his lucidity to prepare a letter, together with his lawyer, in which he advocated euthanasia.
“His life was like a nightmare but in reverse: at night he dreamed that he was running, flying, making love.
But
when he woke up he was living that cruel nightmare with terrible existential suffering
”, explains the doctor, who, after meeting him, hugged Oliva's relatives and broke down in tears.
Choosing how to die has to be a right of life ”.
Alfonso Oliva, Ela's patient
When the doctor asked him what he missed the most, the man did not hesitate and told him what to eat.
She had been feeding for years with a tube that went directly to her stomach.
“This natural thing that is putting bread in his mouth or having a bowl of soup, he couldn't do it.
They are practically intangible sufferings that many do not understand.
But it is precisely the people who do not live that who decide whether these patients can decide how to die.
It's crazy, ”he says.
"Choosing how to die has to be a right of life", is a phrase by Oliva that his family members often repeat in various interviews.
It's like a mantra that Soriano, who advises the bill team, also remembers.
Like Álvarez del Río, the Mexican expert, the Argentine doctor also has his advance directive request ready.
At 68 years old, he does not want unforeseen events that overshadow the lives of his relatives.
“I have it in my house and I gave it to my family.
These things must be discussed in advance to avoid controversies and suffering, if you leave it in writing there is no longer a possible discussion.
But there are people who cannot make this request, which is terrible.
That is why we must have a euthanasia law ”, he concludes.
Young psychologist requests euthanasia to die with dignity in Peru
Jan. 8, 202102: 42
Chile, one step away
In Chile, terminally ill patients can refuse treatment since 2012 and Congress is currently debating a bill on euthanasia and dignified death that has already been approved in the Chamber of Deputies and is now waiting in the Senate.
In a session of the Health Commission, held on August 31, the senators listened to a woman with a deep gaze and vehement verb who spoke about the torture she lives every day and the right to die that she demands from legislators.
“
I decided that euthanasia would be for me, I do not have the courage to commit suicide,
but the pain that I have should not be had by anyone.
That is why I am asking for a euthanasia law, not a good death, I do not want palliative sedation, I want certain death, "said Cecilia Heyden, a Chilean activist and social fighter.
Heyden, 55, has suffered from several haunting health complications that led to her being in a wheelchair.
In addition to presenting metastatic cancer and lupus, since 2019 she suffers from a blood disorder that forces her to undergo constant plasma transfusions every week.
Cecilia Heyder, a Chilean activist who is fighting for the approval of the euthanasia law in her country.
Heyder suffers from cancer, lupus and other diseases.Esteban Felix / AP
“It is a savage cruelty, it is torture to be aware that your body is no longer responding, and because I am not in a semi-unconscious or unconscious state, I have no right to euthanasia.
It is not normal to bleed from the nose and not be able to support myself or go to eat and vomit blood.
My joints tear inside and swell. The pain is horrifying, ”explains Heyden, who has three indwelling catheters and is given morphine every six hours.
The bill was introduced to Congress in 2014 by center-left MPs and establishes a legal framework for terminally ill patients to decide when their lives will end.
The document establishes that only people over 18 years of age 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 heyden euthanasia activist
Heyden has fought a legal battle in his country to push through the law because he hopes to see it passed before he passes away.
In 2006 and 2011, before falling ill, the activist had already supported several euthanasia bills that were not approved.
“
I have been on the streets for more than 30 years fighting for truth, justice and against impunity.
My father was executed in the military dictatorship of the bloody Pinochet and I have fought all my life for causes such as free and free abortion, medical and recreational marijuana and I also supported euthanasia, but I never thought I would need it.
Euthanasia is going to be my last battle because I desperately need it, ”he says in an interview with Noticias Telemundo.
Colombia debates whether a minor can decide whether to live or die
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An increasingly strong debate
Although Peruvian law prohibits euthanasia, in February this year a court ruled in favor of a request from Ana Estrada, a 44-year-old psychologist who has suffered from a degenerative disease for three decades and claimed her right to euthanasia.
Estrada suffers from polymyositis, a degenerative and incurable disease that chronically weakens his muscles, and in 2015 it began to affect his respiratory muscles for which he had to undergo a tracheostomy and a gastrostomy (he has tubes in his trachea and in his stomach to breathe and eat), and was under the constant care of nurses.
“
My body fails, but my mind and spirit are happy.
I want the last moment of my life to continue being 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 his euthanasia.
However, Estrada's case has yet to be resolved.
In May it was elevated to the Supreme Court that could ratify the February ruling with what would already be a final judgment or review the case.
What I want for myself, and for all people, is to have the autonomy of my body ".
florence salgueiro, euthanasia activist
Meanwhile, Estrada, like many other patients in Latin America, continues to wait.
In Uruguay there is a law known as advance directive or good dying, which also regulates the freedom of a patient to refuse treatment, including palliative care, in order to accelerate its final outcome.
But, as in other countries, a bill on euthanasia is also being presented that seeks to allow medical personnel to cause the death of a person "of legal age who is psychically fit and ill with a terminal, irreversible and incurable pathology" .
For Florencia Salgueiro, activist and member of Empatía Uruguay, an organization that promotes the decriminalization of euthanasia, the discussion of the law is a crucial issue for the future because she had to see her grandfather, her uncle and her father succumb to the rigors ALS, unable to do anything about it.
“What I want for myself, and for all people, is to have the autonomy of my body.
That is to say, that the decision is to live until the last possible second,
and that leaving before time is a possibility that is in my hands
because nowadays that does not exist ”, explains Salgueiro.
A survey by the Uruguayan Medical Union in May 2020 showed that 82% of citizens are in favor of euthanasia and 62% in favor of assisted suicide.
"There is a great opportunity because 82% of Uruguayans do not agree on anything, not even in football. Now is the time," says Salgueiro.
Other countries in the region have also developed similar bills or reforms that contemplate euthanasia, but they have not been approved, as is the case in El Salvador and Venezuela.
Paralyzed woman calls for death and fights for a change in euthanasia laws
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Latin American countries, in general, have populations that mostly profess the Catholic faith, so the frequent criticisms that religious prelates make about legal initiatives to institute euthanasia tend to influence the slowness or the dismissal of bills, according to say various experts.
"Religion should be respected as any type of belief, but it cannot be the only argument because what do we do with those Catholic people who want to die with dignity, or with atheists or people of another religion who do not agree with that? life belongs to God and that only God can take it away from us, "says Soriano.
As the debates continue, patients like Ostropolsky spend their days making the most of the joys of everyday events such as the aroma of a favorite dish or the delicate harmony of a musical movement.
The Argentine lawyer says that, despite everything, he does not abandon good humor.
A few days ago, she was accompanying her daughter in the garden.
While she was transplanting some pots, she was on the phone and asked someone to bring her some bags of soil.
Ostropolsky interrupted her, laughing, and said "not yet, daughter, hope that I get a little worse."
However, he is very serious when he talks about his last days.
“I walk my way thinking that this law will exist.
If that doesn't happen, who is going to protect me from so much unjust and cruel suffering? ”He asks with a grim face.
