A flood of people requesting aid to die is not expected when the euthanasia law comes into force, the experts consulted agree.
But for people who consider it or have thought about it at some point, only the implementation of the rule is already a “relief”, “a peace of mind” in the face of the uncertainty of how their disease or the suffering they suffer will evolve.
The law is clear in the requirements to access the benefit: be over 18 years of age, have full powers when requesting it, “suffer a serious or incurable disease or a serious, chronic and incapacitating condition”, have voluntarily requested it twice and in writing and give informed consent. If the plaintiff is not in full use of his powers, but meets the clinical requirements and has a prior living will where he expresses his will, he may also access the benefit.
But now that the day of entry into force of the norm is approaching (June 25), the doubts and inconcretions that the law raises are enlarged. The professionals consulted agree on two issues that generate uncertainty: on the one hand, how to measure the serious condition of the patient, how serious it is, how it is quantified; and, on the other hand, how the requests of people with mental health problems are dealt with, how it is discerned whether the demand is a deep will or the mental disorder interferes in decision-making. There is no clear answer, they value. Health prepares a manual of good practices with the communities within the Interterritorial Council that, foreseeably, will unify criteria and solve some of the controversies that the drafting of the law raises.
But beyond the technical disputes, people who have considered resorting to euthanasia at some point admit that the very fact of having a law that includes the right to receive aid to die, is already a qualitative leap.
The law states that this aid can be produced in two ways: the direct administration of a substance to the patient by a professional (euthanasia) and the prescription or supply to the patient by a health worker of a substance to be administered by the patient himself (medically assisted suicide).
Jesús Vázquez, sick with ALS, at his home in A Coruña.
Brais lorenzo
Jesus Vazquez Conde
A Coruña
57 years
Suffering from ALS for four years
"This law gives me hope of life"
In the summer of 2017 Jesús Vázquez Conde discovered on the beach with surprise that getting up from the towel cost him a world. He was 53 years old and what he attributed to ailments of middle age led to the diagnosis of a degenerative and incurable disease: amyotrophic lateral sclerosis (ALS). Since then, this neighbor of A Coruña has looked death and pain in the face and the euthanasia law has given him "certainty" not only in his last days. "This law gives me hope of life," he celebrates from the Monte Alto neighborhood where he lives with his wife and two daughters.
Vázquez Conde needs a wheelchair, two cranes and a lot of attention from his daughter Iria, his official caregiver. He is learning to operate the computer with his eyes and displays an ALS-proof sense of humor. He does not plan to exercise his right to euthanasia at this time, but knowing that he will be able to do so is an immense relief. In the irremediable evolution of his disease, with increasing difficulties to breathe, he already has a limit marked: "The tracheostomy [tracheostomy] is my border." Until now, after this complicated intervention to give assisted breathing, the ALS patient had only sedation left, which can “last, last and last”, as a doctor confessed to him. With the law, "they will give me a medicine and they will give me certainty," he explains.
With an ailment like ALS, the law offers Vázquez Conde “clear guarantees” that he will be able to pilot his departure from this world. “I take it or I don't take it, but I have it there. In other cases [the legal coverage] may not be so clear and I am also thinking of those people ”, points out this 57-year-old Galician. He trusts "
a priori
" in the correct application of the law by the Galician Autonomous Administration, but he will not be "completely calm" until he finishes registering his living will: "If you have it well prepared and accepted and you want to the law, there shouldn't be too much of a problem ”. He believes that the procedures are "excessive", but predicts that with the passage of time they will be smoothed out.
Vázquez Conde recalls the misunderstanding suffered by his countryman Ramón Sampedro, to whom a priest snapped that "if you wanted to die, stop eating."
He sadly relives the sufferings of María José Carrasco or Fernando Cuesta and does not forget the delayed promises and the slow parliamentary procedure.
He feared so much for the approval of the norm that in the last generals he published a video on social networks asking for the vote "for the parties that unequivocally support a euthanasia law."
"There were those who told me that they did not think to vote but that, after seeing me, they did it for me," he presumes.
Jesús Blasco, 88, in the living room of his home in Barcelona.Gianluca Battista
Jesus blasco
Barcelona
88 years
Throat cancer was diagnosed three years ago
"Before suffering, I resign from life"
The idea of euthanasia began to haunt Jesús Blasco's head when he was diagnosed with throat cancer three years ago.
“I had decided that, if one day I had cancer, that is not what I was going to die of,” the 88-year-old man now recalls from the living room of his home in the Sant Genís neighborhood of Barcelona.
But euthanasia was illegal and the pain was increasing, so he agreed, despite his initial refusal, to have surgery on the tumor.
"They sentenced me to five months without eating and I revolted," he recalls.
He could not resort to euthanasia, but without eating, he also did not want to live, so, against medical judgment, he began to take food.
Little by little, with food easy to digest and in small quantities, he recovered and abandoned parenteral feeding, says the old man while his wife, Ana María Pérez, 86, agrees proudly.
From those unfortunate days, Blasco has been left with a tracheostomy that occasionally clears his speech and the firm idea of resorting to euthanasia when he deems it appropriate. “As long as I hope to recover, of course not. I live very comfortable. Now, at any price, I don't want to live: if I can't eat or have pain that I consider to be uncomfortable, I want to go, ”he insists.
Euthanasia is not among his short-term plans, but he vehemently defends it. “I don't think about it now, but I defend that right. If I decide this tomorrow, the goal is to end pain, not life. It is not a suicide, ”says the old man. His blue eyes light up with the subject and he raises his voice to question the law of euthanasia: it gives him peace of mind, he says, but also mistrust. “Until I see it done, I don't trust anything. Will a committee decide if it hurts enough or not? I do not consent to it. That is up to me, ”he protests.
Blasco did not know school - "I don't know how I learned to read and write," he hesitates - but he knows a lot.
He was a farmer until he was 16 years old in Used, in Zaragoza, and then a taxi driver, and then a shoemaker for three decades in Barcelona.
Now, a friend of new technologies, he spends time reading news on his computer or uploading photos to Instagram and breaking his back in his garden in Cerdanyola del Vallès, where he grows tomatoes, aubergines and peppers.
He has rope for a while, he assures: “I have compared the subject of death with the child who, so that they do not see him, closes his eyes.
With this happens a bit.
When people talk about death, they close their eyes.
But death is there and no one escapes from it.
Well, let's take it with joy and if there is no joy left, with serenity ”.
Ana Jaén considers euthanasia as soon as the situation worsens.Gianluca Battista
Ana Jaen
Barcelona
70 years
He suffers from colon cancer and two mental health disorders: bipolarity and borderline personality disorder.
"I ask for euthanasia on principle, but I will disappear the day I want"
At the age of 24, Ana Jaén (Las Palmas, 70 years old) donated her body to science and since 2013 she has a living will collected in her medical history in which she says that, faced with a complex medical situation, she wants it not to be done. nothing.
Just let it go.
Jaén was diagnosed a year ago with colon cancer with lymphatic metastases and has also been living with two mental health problems for two decades: borderline personality disorder and bipolarity.
He does not know when, but he assures that he will request euthanasia.
"I ask for it as a matter of principle, but I am going to disappear the day I want to," this retired hematologist summarizes bluntly.
Last year, Jaén's life turned upside down in the midst of the pandemic: after 18 days with constipation and "unbearable pain," he says, he suffered an intestinal perforation and fecaloid peritonitis. She was transferred in a very serious condition to the hospital and they operated on her "for life or death," she maintains: they detected an advanced tumor and had to remove part of her colon. Now, you have to use a bag attached to your abdomen to expel the stool. "I was diagnosed with
shock
post-traumatic after waking up from the operation, with the bag and the consequences that all this has, "explains the woman, who assures that her will to" do nothing "in a serious situation was not respected. “If I have decided that I had to be dead, no one has to convince me otherwise. No one. Out of respect. Because I don't tell anyone to kill themselves, ”he protests.
Jaén knows that mental health disorders, although he assures that he has them "controlled", will weigh on his record when he goes to ask for euthanasia. “The law is a vindication. What I do not agree with is that family, friends and witnesses have to intervene in it and a team of doctors decide if I can die or not. But who are you? I am going to argue that it is due to incurable cancer, although mental disorders are also incurable. But not their minds because then… I have to simply fool them and say that it is because of colon cancer ”, he admits.
In fact, the approach to people with mental health problems within the framework of this law is one of the issues that raises the most concerns among professionals.
“Having a diagnosis does not mean that the person cannot request euthanasia, but it is necessary to assess whether this disorder is affecting their decision-making capacity.
There are many situations in which the person is stabilized and their ability to make decisions is fine ”, clarifies Manuel Martín Carrasco, vice president of the Spanish Society of Psychiatry.
Ana, however, is clear about her plans: “I don't want to be aware of a relapse or carry the bag.
Living with mental health disorders is enough.
I do not know when I will ask for euthanasia: when I get sick of the situation or I feel bad, it will be enough ”.
Rafa Botella, a tetraplegic, claims his right to die with dignity.
Monica Torres
Rafa Bottle
Valencia
36 years
Tetraplegic due to an accident two decades ago
"Now I want to live, but I may need the euthanasia law"
It is animated.
The project of shooting a short film inspired by his life that will allow him to return to a
hardcore
music concert
in his wheelchair and meet some of his
DJs
favorites stimulates you. The possibility that a Colombian friend, who he met through the internet, participates in Adán Aliaga's film, excites him. Noticeable. But Rafa Botella, 36, a quadriplegic due to an accident when he was 16, does not forget either. He continues to feel excruciating pain, but he has learned to live with it a little better. He does not know until when. Two years ago he called the Right to Die Dignity association for help. His face became visible and public when he demanded the approval of a euthanasia law that was then a promise and demanded his right to decide on his life, on his death. Finally, on June 25 it will come into force in Spain.
Rafa says he is relieved, happy because he considers it a fair right. “When you talk about euthanasia, you always think of people who are very bad, very bad, who can hardly speak, with a negative attitude. Well, I have it positive at the moment and I am not cowed and I can say that yes, I have pain and I am a quadriplegic, but now I want to live and I also want the law to exist because I may need it, not just me, anyone. Sometimes I show my best face, but inside no one knows how I am ”, he explains lying down from his bed, in the adapted house of his town of Simat de la Valldigna. His mother advises that he is going to the pharmacy. A niece comes in to say hello.
Now he gets back into his wheelchair, with which he has more independence. He left her a few years ago because of the pain. Today [last Wednesday] he awaits his "in-laws", the parents of his girlfriend Cristel, who died in that fatal accident, with whom he maintains a relationship only interrupted by the worst months of the pandemic. He thanks Javier Velasco, the president of the Right to Die with Dignity, first for his help and then his friendship, and stands firm in his defense of the euthanasia law, but now he has other plans: “It is a vindication of a just law, a Third, I cannot tell you: 'You cannot and will not die because my voters do not want you to die and I owe myself to my voters.' Wanting to die is still taboo. There are those who prefer to have you as a vegetable or suffering the unbearable all your life. I do not get it".
Ana Mosquera, sick with ALS, together with her husband, Juanjo Uria, poses in the living room of their house in Zarautz (Gipuzkoa). Javier Hernández
Ana Mosquera
Zarautz (Gipuzkoa)
53 years
You were diagnosed with ALS 16 years ago
"I know what the end will be like: hugging my family"
Ana Mosquera (Zarautz, Gipuzkoa, 1967) finds it difficult to speak.
The expression on his face, however, is clear and transparent, it says it all.
It is Juanjo Uria, her husband, who verbalizes the feelings and thoughts that Ana keeps silent.
She hardly ever loses her smile.
Since 16 years ago he was diagnosed with ALS (amyotrophic lateral sclerosis), every day he has done a vitality exercise: “I want to live every second to the fullest.
The disease is not going to be able to me ”.
He says he has "a lot to live for."
16 years ago, the neurologist summoned them to communicate the diagnosis. Juanjo remembers that they received the news “out of the blue” and acknowledges that the world fell on them: “It was a very hard blow. He told us that life expectancy was two to five years. Our daughters were then five and eight years old. What do you do in that situation? Life goes on since then for this family that, as Ana says, does not think about the future: “The important thing is the day to day. You have to enjoy today because tomorrow I don't know how I'll be ”. Happiness is in the little things, in the expressions of affection that are exchanged, in the union of the family, in the support they receive from friends ...
Ana goes out into the street in a wheelchair. A coffee, shopping, sunbathing… they make you feel good. “She likes to always be well groomed, with painted nails and a little makeup. She is gorgeous and very presumptuous, ”says her husband proudly. Ana has received help from a psychologist for several years and she copes with the pain without externalizing it. His speech has begun to fail. "She doesn't complain much," says her husband; "She tries to do almost everything by herself, but I have to be very vigilant because any trip is a fall and it can do a lot of damage."
This couple registered the advance directive document two months ago.
Ana will turn 54 on June 25, the same day that the euthanasia law will come into effect.
Its approval by Congress was celebrated as "a very important and gratifying step."
Juanjo comments that they speak of death "naturally" and they have assumed that "that day" will come, although they still see it far away in time: "There are times when she is ill, sad, in pain ... Then the topic of the death, although it is not common.
We have it internalized ”.
With integrity and great courage, Ana admits that she wants to “live with dignity and also die with dignity”.
Where is the limit?
"When I can't express myself in front of my family and I can't swallow."
Juanjo pleaded "guilty" two years ago when, without the euthanasia law being approved, he said that his wife was not going to "let her suffer."
She lets out a knowing smile, offers her hand tenderly ... Ana talks about the end: “It will be very hard, but I already know what that moment will be like: I will be hugging my family.
We will say goodbye together ”.
Credits
Coordination and format: Guiomar del Ser and Brenda Valverde
Art and design direction: Fernando Hernández
Layout: Itziar Amor and Alejandro Gallardo