The song of the birds of the mountains of Madrid seeps through the windows of the chalet, softened by the constant cadence of the respirator that blows air into the lungs of Fernando, lying on the sofa. Neither he nor Carolina, his wife, no longer notice the machine. They have been living with that sound at two speeds for four years, although their illness began much earlier, 16 years ago.
Fernando is 50 years old. He was just 34 when a stiff hand gave way to weakness in his left arm. A false diagnosis came, lost tests and trips to public and private hospitals to find a name for what was happening to him. That name is Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease without cure or treatment whose diagnosis carries a sentence: a life expectancy of between three and five years. Having broken that statistic and already in a terminal phase of the disease, constantly connected to a respirator, with oxygen requirements, feeding through a gastrostomy tube, totally dependent and with a notable difficulty in speaking, Fernando has decided that it’s enough. He wants to die with dignity. He wants to avail himself of the right to euthanasia. His palliative doctor, an objector, offered him two “less aggressive” alternatives: stop eating and die of malnutrition, or remove his respirator.
In ALS, motor neurons die. The information does not reach the muscles and they weaken and atrophy, leaving the patient without the ability to move, swallow, speak or breathe. The body, little by little, becomes a prison. The end is written in the diagnosis. And Fernando was always clear that he wanted to control that ending. “Throughout the development of my disease I always thought about maintaining control of my life. As there was no euthanasia law, I thought about how to end it. Simply knowing that I could do it, to maintain that control. I did not see it as an immediate measure, but I did need to know that, if necessary, I could end my life. ” Carolina, his wife, caresses his forehead.
On March 18, 2021, Spain became one of the pioneer countries in approving this right, even with the vote against PP, Vox and UPN. That vote was a “relief” to Fernando’s physical and emotional suffering. When the time comes, he could decide. And that moment came this summer, in the middle of August. “I saw that my conditions had dropped a lot, that I was not able to enjoy the little things that until that moment I had been able to enjoy.”
The whisper of water lightly hitting the surface of a pond that Fernando built on the plot joins the birds in a huge cage that occupies the porch of the house. Going out on that terrace was one of those little things he enjoyed. This summer, Carolina says, she has barely been able to go out five times. A simple postural change takes a lot of effort. Sitting means breathing worse and lowering your blood oxygen saturation.
“He has never said he was going to fight, because you can’t fight against this, but you can adapt.” A pro filmmaker by profession, his hands were his work tool. With them he worked in films such as Tirante el Blanco. “I only made bad movies,” jokes Esteban, his brother, while serving coffee. He liked to fish, but he no longer had the strength to pull the rod, so he built a leather belt to support it on. He smoked, but the disease progressed and he couldn’t hold his cigarettes well. “I had no choice but to smoke them whole, so I made myself a kind of ashtray-bib so that the ash would fall into it.” And he liked crafts. In the garage at home he made knives. When he could no longer do it with his hands, he learned to do it with his feet.
“Fernando has always been positive about the disease.” Carolina does not take her eyes off him. It repositiones the blanket and helps him remove any secretions that make it difficult for him to speak. “He has very firm principles and has always been clear about what he wanted at all times. He has maintained for 16 years not only a physical, but an emotional situation that has been what has held him and those around him.” Therefore, your decision is well thought out. “Make the decision from total lucidity. It is not a desperate impulse, it is the decision of a person who has fought a lot and who has all the right in the world to decide how far he wants to go,” Diana Vasermanas, psychologist, tells elDiario.es from Adela, the association of ALS patients, for 15 years.
Carolina remembers, excited, how she received Fernando’s decision. It was a summer Sunday, having breakfast. “For us it was a long-term option that I wish had been contemplated before, not only by us, but by all the people who have needed it. I was shocked, although I knew that at some point it would come.” They communicated this to Diana, his psychologist. Fernando had compiled all the necessary information about the process. “There I collapsed, because I saw that he was serious. But I do not want to see him suffer and I understand him. We have been together as a couple for 21 years. We have known each other since we were 18. For me, apart from my husband, he is my friend, my partner. everything.” Take a breath. “And I’m going to miss a lot, but I don’t want to see him suffer anymore. I don’t want him to reach a state where he doesn’t want to be.” Fernando looks at his wife. Carolina caresses his forehead.
Support and obstacles
Once the decision was made, they transferred it to Antonio, their family doctor, from whom they received full support. “I asked him if he was an objector – Fernando says – and he told me that whether or not he was an objector was his problem, but that submitting to euthanasia was a right that I had and in which he was going to help me.” Antonio activated the mechanism. Aware of the bureaucratic obstacles that can be found in the process, he decided to request different reports to put together the case for the case. One of them to social services, who would come to his home this past Monday. They canceled the appointment at the last minute and postponed it to November.
With Fernando’s firm decision, they communicated it to the palliative doctor who visited him once a month. “He offered me two alternatives. In verbatim words, ‘less aggressive than euthanasia’, but which seem much more aggressive to me, especially for my loved ones. They would cause me to die a bit more violently. The first was to stop eating. until I was so weak that they had to admit me and sedate me. ” He didn’t even consider it. “One does not know how long the sedated body will endure, how long the family member will have to wait for me to finish … Besides, I think it would be a suffering to go without food until then,” he reflects.
The second alternative Fernando had already considered it at some point, and even came to consider it many years ago to his pulmonologist when making the living will. She dismissed it outright. “It would be a question of asking to sedate me and remove my respirator. This, he explained, would almost certainly produce a cyanotic state, turning blue, because my heart would probably continue beating. A suffering for the one who accompanies me and perhaps also for me. “.
The objector doctor put these two alternatives on the table after the approval of the euthanasia law. “It seems outrageous to me. There is a law that offers me the possibility of a painless and fairly quick death, what it proposes is not at all less aggressive, quite the opposite.” The respirator continues to sound, accompanying your inspirations and exhalations.
“The idea of withdrawing the nutrition – Carolina tells them that the doctor told them – is that the disease runs its course. But it has already run its course. And it has been very cruel,” she replies. “Withdrawing nutrition in a patient like Fernando is an abomination. It would mean malnourishing him and he is already weak enough. It is a cruel death. He did not consider it. And, of course, I don’t have to have to withdraw that diet myself.”
The fear, the times, the certainties
Fernando is calm, but he is afraid of one thing: “I am afraid that something will happen to me before I can carry it out the way I want. I am constantly exposed to choking, drowning … It is not a death that I want neither for myself nor for my wife or my brother. I don’t want to leave that memory to my loved ones. ”
As soon as your GP presents the documentation, the deadlines will begin to run, waiting for the Community of Madrid, where you reside, to publish the regulation that regulates the Euthanasia Guarantee and Evaluation Commission, made up of doctors, nurses and jurists, in charge, in the last instance, of giving the approval to the cases. At that time, the law will be effective in Madrid, more than three months after the expiration of the term established by law, approved on March 18. Madrid approved the decree this Wednesday, one day after this interview was held. The community chaired by Ayuso, Extremadura and Andalusia are the three laggards who have not met the established deadlines. Extremadura approved the decree last week and Andalusia has not yet set a date.
“Unfortunately politics is being done with this issue. There is an ideological and religious background. I don’t have to wait for people that I neither know nor accept to be the ones to decide for my life,” whispers Fernando. “Just yesterday I had to see how a political leader – he says in reference to a speech” in favor of life “by Pablo Casado at the National Convention of the PP in Valencia – promised that, if he came to the Government, he would repeal this law to implement the Palliative care. It made me quite furious. ”
The law, Fernando affirms, “is tremendously guaranteeing. People should read it to themselves and find out to realize that no one is being forced. No one is going to be taken out of the way. It only gives people the opportunity not to continue suffering. “. The same is defended by her psychologist, Diana Vasermanas: “The law has mechanisms to assess that this decision is not the result of an outburst, pressure or conflicts that require other types of approaches. That is why it has generated expectations in people who are waiting for its implementation to access an already recognized right “.
Even with current national legislation, the ball is in the autonomous communities. In Spain, according to information from the Right to Die with Dignity (DMD) association and there is still no public data, 10 euthanasias have already been performed. In the communities where it is not yet possible, denounces Fernando Marín, president of DMD Madrid and doctor, “the defenselessness is absolute.” “There is only the resource of continuing to insist.”
Carolina, always on the lookout for Fernando, takes one of the blankets from him. It is somewhat warm in the living room. “He has always faced ALS with a lot of positivity and has adapted to everything. I would not like that what his disease has not achieved, a bureaucratic procedure can achieve.”
He accompanies what his partner says explaining the reasons why he decided to grant the interview: “It is interesting that the point of view of the people who choose this right is known, which I think is a fundamental right. that we suffer from this type of disease, “he defends.
Fernando will not tolerate either of the two alternatives proposed for palliative. Carolina and Antonio, her doctor, will continue fighting to ensure that a right that is already legally recognized in Spain is fulfilled: that of dying with dignity. She caresses Fernando’s forehead again. He responds with a smile.