The Bernal family had the date on which they had decided that Julio would die.
They were all together, even those who lived outside the country had arrived in Santo Domingo de los Tsáchilas, a province that is three hours from Quito, to say goodbye.
The seamstress had delivered the long-sleeved white suit that her mother had ordered to be made to dress Julio at her wake.
The funeral home had scheduled the mass, the flowers and the entire funeral ritual for March 20.
But a few days before the scheduled date, the doctor said that he would not perform the euthanasia.
He was the third to refuse to do so in a country where euthanasia has been decriminalized since February 5 following the ruling of the Constitutional Court of Ecuador that declared this right constitutional for people who, due to their illness, cannot lead a dignified life.
The judges limited access to an assisted death for those who suffer intense suffering due to a serious and irreversible bodily injury or a serious and incurable illness.
It has been a historical milestone for a conservative and religious country like Ecuador, and only a handful of countries have walked towards this.
The magistrates also allowed this right not only for patients who can express their will to decide when to end their suffering, but extended it to those who can no longer do so, granting that right to a family member or legal representative.
That is the case of Julio, bedridden with a 98% mental and physical disability.
His diagnosis is post-cardiorespiratory arrest anoxic encephalopathy, a type of brain death.
Ten years earlier, on March 30, 2014, 29-year-old Julio Bernal had arrived home after visiting his parents.
He was lying on his bed to sleep when the pain in his chest suddenly woke him up.
He was suffering a heart attack.
His girlfriend took him to the hospital, but after midnight the doctors gave her the tragic news, Julio had died.
Fifty minutes later, he began an unexpected movement in the emergency room of the Santo Domingo hospital.
Doctors were carrying out resuscitation maneuvers in July.
Outside the room, the entire family was crying without understanding what was happening.
The doctors returned with another news: Julio has actually been alive.
There were no further explanations of the consequences of that, they were only told that they had to take him urgently to a hospital in Quito.
By dawn they were already in the capital and the doctors explained to them the consequences of his brain having been left without oxygen for so long.
Julio was alive, but he was no longer him, nor would he ever be again.
They could see his body, but his brain had suffered irreversible damage.
“The doctors told us we could disconnect it, but as a family we held on to a miracle,” says Amanda Bernal, the older sister and legal guardian.
The Bernal family presented a petition to euthanize Julio.
Santiago Arcos
A priest, an evangelical pastor, a shaman and a witch passed through the Bernal family house.
Everyone promised that Julio would recover, that he would walk, that he would have children and would dedicate himself to evangelizing about his miracle.
They all nourished hope in the parents who only found in time the resignation to accept that their son had already died the first time, on that hospital stretcher.
“Until we saw Paola Roldán's story,” recalls Amanda, the woman with ALS who sued the State to legalize euthanasia, “with her story we understood that it was the way out for my brother to stop suffering,” says the sister.
The family supported Paola's lawsuit before the Court, exposing the case that her brother is suffering from.
Paola died on March 11, a month after the judges issued the ruling in favor of her petition.
Although she was able to see the fruits of her struggle, her family has not confirmed whether her death was due to euthanasia.
With the legalization of euthanasia, the door was opened for the Bernal family who decided that ten years of Julio's suffering were enough and began the procedures to request it where they have encountered all kinds of obstacles.
“We went through six notaries in Santo Domingo to legalize the request with the support of the medical diagnosis that confirms that what happened to my brother is irreversible and that he suffers, they all told us no without further explanation,” says Amanda.
When they finally managed to get a notary from Quito to receive and sign them, they now face the Ministry of Health appointing a doctor to carry out the procedure, which consists of an injection of several medications that quickly and painlessly produce death.
The judges' ruling specifies that decriminalization is immediately applicable;
That is, a doctor should not be prosecuted if he or she attends a death within the parameters established by the Court.
However, doctors who are willing to do so prefer to wait for the protocol that must be issued by the Ministry of Health.
The draft regulation for the application of euthanasia is already in the hands of some doctors for review, confirms Fernando Arroyo, president of the Ecuadorian Society of Bioethics.
"It is being analyzed and observations will be made, which we hope will be taken into account so that the document can be ready in the time dictated by the Court," adds the doctor, who assures that "the document will establish the entire procedure to prevent "Doctors do not be afraid to apply euthanasia."
Margarita and Hernando help their son Julio do exercises several times a day and thus avoid pain.Santiago Arcos
Julio turned 39 in January and in a few days it will be ten years since he stopped being the young athlete and worker.
He is the most spoiled son of Margarita and Hernando.
The one who cared about everyone.
The neurological damage caused a blackout in his brain, burning a large part of the talus, where all the capacities of consciousness are housed.
Julio opens his eyes but doesn't see.
He doesn't listen either, nor does he have any notion of time.
He doesn't know when it is day or night.
He does not feel hungry, although he is tube fed.
He has a tracheotomy through which they insert a very fine tube to filter the saliva that he cannot swallow on his own.
“He drowns, that's why I have to be at the foot of the bed, I sleep with him, with one eye open and one closed to inhale the phlegm as soon as I hear him drowning,” says Margarita Jarrín, his mother.
The 72-year-old woman's life revolves around Julio's palliative care.
“In one day he can change his diaper about eight times.
Another 30 times we have to change his position, right, left so that he doesn't get bruises on his back, because that turns into bedsores, but his skin is clean because we take great care of him," adds the mother, with a gesture. of tiredness.
—Were you able to sleep?
-No.
I was breathing in the phlegm all night, maybe I slept for three hours.
This is like this every day.
It's been my life for the last ten years.
Margarita has confessed to her other four children through tears and despair that she has thought about suicide.
“My mom says that death would be something better for her, that she is tired, that she can't take it anymore.
The whole family is going through this,” says Ernesto, the youngest of the brothers, who has been in charge of documenting 10 years of Julio's illness so that the judges of the Court would know his case.
“Julio is imprisoned and it is horrible to see him suffer, it is like Munch's painting The Scream, he makes the same expression, when he gets stuck, you can hear his voice shouting “ahhh”, it is exasperating,” he adds.
Ernesto Bernal watches his father and a nurse while they provide care to his brother.
Santiago Arcos
In the mornings a nurse helps care for Julio.
Together they do the therapies to prevent further atrophy of her fingers and toes.
It is a work of strength.
He bends and straightens his leg, massages his toes.
He repeats the exercises on his arms and hands.
Margarita, who is no taller than 1.60.
She ends up exhausted, breathes heavily and ends the moment with the phrase that she always repeats to herself “I must be strong.”
The routine of Hernando, her 82-year-old father, also begins in the white room that was set up in the house especially for Julio.
“I greet him, I say good morning to him and I tell him stories in his ear,” says the father, and a few tears fade down Julio's cheek, with an expression as if he were silently screaming.
“We don't know if he is in pain, because he has that reaction at any time,” continues Hernando, who looks at him tenderly, “he was my best friend,” says the father.
“We know that the day my brother leaves will be very hard for the whole family, but we have to stop Julio's agony, because he has not had a dignified life, at least we want to give him a dignified death,” says Amanda.
The Bernal family is waiting for a response from the Ecuadorian State, which increases the anxiety of a decision that took time and pain to accept to let their son go.
Everything is already prepared: the shroud, the flowers, the grave.
Julio is ready to leave.
Portrait of Julio Bernal (left) before the cardiac arrest that would leave him with 98% physical disability and brain death. Santiago Arcos
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