First year of the euthanasia law: an act "of courage and generosity" and at the same time a right "in diapers", according to the families

"We were watching the news. They had just passed the euthanasia law and, in a moment of lucidity, my mother looked at me and asked us to include [ese derecho] in her last wishes", points out one of the daughters of Ainhoa ​​(fictitious name). A few months later, and with a very advanced cognitive deterioration caused by Alzheimer's, this woman exercised her right to die with dignity.

She is one of 180 people that have been covered by the regulations that it complies with this week its first year in force. There was talked about this topic for years with her daughters, long before Congress gave the green light to the euthanasia law. Ainhoa ​​had been a caregiver for her mother, who was also suffering from Alzheimer's, and she feared an end of life like the one she had had to accompany.

When addressing when she would want to exercise her right to euthanasia, with the law already in force, Ainhoa ​​was descriptive. "At the moment when I continually do not recognize my loved ones or myself or know where I am and may be causing my daughters suffering, that is where I want it to be applied." This is how this Basque woman left her wish in writing.

Congress gave the green light to the law in March, but it did not go into effect until June. That June 25, 2021 has become a historic day for many activists who have spent years defending the right to die with dignity. One of them is Ángel Hernández. His case grabbed front pages and headlines and put euthanasia back on the media agenda.

Three years ago, Hernández helped his wife, María José Carrasco, who was terminally ill with multiple sclerosis, die. With the entry into force of the law, the Prosecutor's Office withdrew the accusation for cooperation in suicide and the open case against him was filed. In December 2018, Hernández and his partner began to address this situation, given "the pain and suffering" that the neurodegenerative disease was causing María José.

His wife came to ask for help from the palliative care professionals who came to their home. "They told him no. As soon as they left, María José told me: 'I can't wait any longer, I'm having a terrible time.' Given the refusal of these professionals and the lack of legislation, Hernández located sodium pentobarbital. It is a substance that produces a coma in five minutes and a cardiac arrest in 30 minutes. It is used by doctors in countries where euthanasia is legislated, such as Switzerland or Belgium.

Three years later, Hernández recognizes the risks they took and which the application of the euthanasia law puts an end to. For example, he describes not knowing for sure what he was supplying to his wife. When they obtained the product, they assumed "the possibility" that the acquired substance "was something rare."

With the regulations already in force, Hernández hopes that the law is maintained and that the Constitutional Court does not overthrow it, after the appeal presented by the PP. "It is still in its infancy. It has a long way to go. The important thing is that the law is upheld," he adds. The approved norm determines that in order to exercise the right to euthanasia there must first be to go through several filters. First of all, the request has to be evaluated by the doctor responsible for the applicant. Subsequently, a second doctor will also be consulted and, from there, the case goes to the Guarantee and Evaluation Commission; this body has the capacity to approve the request.

When Ainhoa's cognitive impairment due to Alzheimer's approached the description she had made months before, her family went to the family doctor who had cared for this woman for years. "She told us yes, that she believed it was the moment she had asked for," her daughter recalls. In the same line, the doctor of the second filter, who was a neurologist, took a position. And she finally got the approval of the committee.

In the balance sheet of the first year of validity of the law carried out by the association Right to Die with Dignity (DMD) highlights the territorial inequality. Catalonia, Navarra and Euskadi are the communities "where euthanasia works best" in our country. "At the other extreme, Madrid and Andalusia stand out," indicates this platform in a statement.

These two autonomies are in the queue because "they were the last to create" the Guarantee and Evaluation Commission, "an essential body to process euthanasia, depriving its citizens of this right for months."

In addition, referring to the two communities governed by the PP, from DMD they point out that "an effort is needed" to "develop the model of references to support professionals, train more health workers and promote protocols in Primary Care, hospital, residences and private health that are giving good results in other autonomies".

The final assessment made by Ainhoa's family on the operation of euthanasia in the Basque Country is positive, although they do highlight a couple of corrections that they would like to be taken into account. As they point out, they would have liked to have more contact with the Commission during the days in which they were deliberating. "There were a few days that were very long for us," recalls this family member, who recommends that there be "a little more continuity in the relationship with relatives" at those times.

As it was one of the first cases in this autonomy, they point out that they only found "confusion" in the application of "deadlines" and "protocols". A little over a month passed from when Ainhoa's family requested the right to die with dignity until it was executed, recalls her daughter.

She and her sister accompanied their mother to the hospital. "The entire team from the commission attended us. The professionals were a joy, there were a lot of people looking after us," she explains. Her mother faced this "calm" process and they had time to say goodbye to Ainhoa.

The family of this woman has requested that her name not be published because "the subject of death is a taboo." "It makes me sad that I cannot say what my mother's name is, who she is and what she has done, because society is not prepared," highlights another of her daughters, who says that in some environments she has not felt "free" to Tell how your mother died.

"With the bad thing that was going on, I didn't want people judging me or her at that moment. What I needed was help and not people rowing in the opposite direction," concludes her daughter. For this reason, although anonymously, she values ​​Ainhoa's decision: "That she has chosen this is an act of courage and generosity for the family. We have seen her suffer so much that it is tremendous."

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