Fri. Apr 19th, 2019

I can not live with this disease anymore. I want to die | Society

I can not live with this disease anymore. I want to die | Society


-It is what it is. This is not going to last long.

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Whoever has come with him or her, his eyes are red. Cry Then the two break.

The light sifted by a white blind bathes the room that looks at the anarchic human tide of Kilometer O in unreality. It is a space where death is shown naked, oblivious to the great taboo of doors outside. "Here all the demons are put on the table," says doctor Fernando Marín, president of DMD Madrid, the largest association, which brings together 2,700 members from 7,000 of the country.

María José Carrasco, the multiple sclerosis patient who committed suicide a few days ago assisted by her husband, she filled out the papers to become a member with her still skillful hands and asked that a member of DMD, in this case Marín, move that space of "impure death" to her home. It was six years ago. "She still enjoyed movies and times with her husband. But I wanted to die, "recalls the doctor, also a specialist in palliative care. 16% of consultations to DMD Madrid in 2018 were from people who wanted to take their own lives.

"I want to die, what do I do?", They come to say. In a country whose citizens massively support euthanasia (85%, according to the latest Ipsos survey of 2018), the answer is still shaded by clandestinity. The bill for its decriminalization promoted by the PSOE was blocked in the Mesa del Congreso by PP and Ciudadanos this legislature. DMD has a short publication (40 pages) only available to members with more than three months old, full mental faculties and if they expressly request it, such as Carrasco. In the Voluntary death guide updated information on the methods to take your own life, analyzing them according to your safety and absence of suffering, "the most important". Also according to the ease of getting medication, rapidity of effect or long-term expiration date. "There is no magic solution," warns the guide, "no method is infallible."

DMD only analyzes two: a cocktail of drugs and sodium pentobarbital, the one chosen by Carrasco. A medication, stresses the manual, "exclusively for veterinary use and not marketed" in Spain. It is the employee to practice euthanasia to animals. She got it online, risking a fine for committing a fault, since buying any kind of drug on the web is prohibited, as the guide recalls, which informs of all the legal implications of the decision to die voluntarily. If it had been the husband, Ángel Hernández, who had acquired it for her would face up to three years in prison for supplying a harmful substance that "can cause havoc".

From the solitude so many times, and with the weight of the law in the neck, the sick face terrible doubts: Will the bottle arrive in exchange for the 450 euros I have paid? It will work? "There are many scams, websites that pretend to be associations for dignified death or asking for insurance for customs 600 euros more. We inform promptly, following the guide TI have peaceful pill, of [la ONG] Exit International, of the websites or emails that must be avoided. There are about a hundred, "explains Marín.

A detail of the room where the consultations are made in DMD Madrid.
A detail of the room where the consultations are made in DMD Madrid.

Last year DMD delivered 300 guides throughout Spain. "Can you imagine the people who did not dare come and have sought life?" Asks Borja Robert, one of the people who offers advice in Madrid and in charge of communication. Many of those who approach mutter before starting: "It has been hard for me to come ...".

"We believe that of those who requested the guide, 200 had decided to commit suicide. Of the rest, half wanted to get the medication in case they need it in the future. The others ask for it out of intellectual curiosity, "says Marín. Use it or not, it contains recommendations to avoid problems. "We suggest you write a letter to the judge or record a video saying that you have made that decision in a free way."

DMD insists that for many people have a plan B, an emergency exit in case the disease becomes unbearable, is a source of serenity that helps support the process. "As happens in the countries where it has been regulated, many of them fail to make the decision to die and die naturally, as a result of their illness," says Marín.

The telephone rings on the other side of the short library and video library with photos of Ramón Sampedro and other patients who fought for euthanasia and gave testimony of his chosen and inevitably clandestine death. Carrasco's has triggered membership sign-ups. One hundred in a week, when the average is five.

Here they find five people who welcome them. A hundred, the socio-activists, they go out into the street and confront in associations and institutes the taboo that makes up to 80% of the patients who are going to die have not been informed because the family does not want to. Or that only six out of every 1,000 people have signed a living will, that document that specifies how far treatments should go when they are not able to make decisions.

Now it's the telephone. You never know if the caller just wants to know more about the living will, the most frequent. Or if he will report that his insane, terminal father has a nasogastric tube placed in the residence and they refuse to remove it. Doubts about health law and the end of life account for 15% of consultations.

It may be that whoever has decided to come is one of those ladies who feel betrayed by their children in their desire to decide before the end of life. "They want to die before being dependent," says Marín. Or someone who lives without a single moment of the pain-free day. Like that woman already subjected to five operations that committed suicide against what her family wanted. The husband denounced DMD, the only space where she could speak freely of her desire to die.

Or perhaps whoever goes up empty their tragedy on the table by kneading a soaked handkerchief.

Woman, over 60 years old, university

The consultations. In 2018, the right to die right association DMD Madrid counted 579 queries. They estimate that they received double. For the rhythm of some days, not all are recorded.

About what. Information on living will, 52%. Voluntary death, 16%. Health law and decisions at the end of life, 15%. About DMD, 17%.

How. 48% were face-to-face, the rest, by telephone (41%) or via email (11%).

Who. The majority of the consultations were from people not associated (74%).

Partners DMD has 7,000 members in Spain. The majority (2,754) in Madrid.

The profile It is usually a woman (80%) older than 60 years with medium-high socioeconomic status and university studies (80%), who has had a bad experience with the death of a loved one (33%), ideologically wishes to exercise the right to decide at the end of his life (33%) or has decided to die voluntarily (33%).

Financing. DMD is fully supported through membership fees (from 42 euros per year) and donations. In 35 years they have received half a dozen legacies, but they know that many associated people have included them in their will.

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