10 years ago Eskarne had recorded in her living will her wish to be euthanized. On July 23, he died at his home with his family and with the help of doctors, as he had requested. He was the first person to be euthanized in the Basque Country after the approval of the law that regulated it. If Eskarne had registered his advance living will in Andalusia or Madrid, he would have had to ratify it. And if she had been incapacitated, she would not have been able to fulfill her wish, being unable to do so. These are the only two communities that require an update of this will so that a dignified death can be applied to them, although the Ministry of Health insists that this ratification process is unnecessary. Madrid and Andalusia are also the last –October 19 and 7, respectively– in having approved the decree of development of the law to constitute the Guarantee and Evaluation commissions that have the last word in this process.
The ratification of the living will required by Madrid and Andalusia shows the regional disparity in the development of the norm. Since its entry into force, the effective exercise of euthanasia has advanced at various speeds depending on the postal code and, although some regional governments – such as Catalonia, the Basque Country or the Balearic Islands, among others – accelerated the development of the circuits attention and hurried the training of health workers, other autonomies have lagged further behind. A month after the entry into force of the law, social entities denounced the lack of training of professionals, bureaucratic obstacles and administrative delays. Six months later, the first euthanasias have already been performed and applications are being studied in several communities. But in others the stumbling blocks persist.
In their respective web pages where they detail access to this service, the Junta de Andalucía and the Madrid’s community They offer the same wording on the invalidity of the request to benefit from euthanasia made before the entry into force of the law. “In those cases in which you have expressed the will to request euthanasia in certain circumstances, before the publication of this law, you must update the prior instructions document to record and update said will.” In Andalusia, according to the registry of the Ministry of Health, there are 45,232 filers with prior instructions, and in Madrid there are 35,702. In Spain there are a total of 357,486 people who have registered this document.
From the Right to Die Worthy Association (DMD), its spokesperson in Andalusia, Eva Camps, does not understand this blockage and draws attention to the problems that may arise in cases in which the person who registered his advance living will is already incapacitated to modify your wording because you suffer from dementia, Alzheimer’s or another degenerative disease. “We understand that they cannot invalidate the content of advance living wills and even less if they are registered in a timely manner,” indicates Camps.
DMD appeals to law 41/2002 on patient autonomy, which in article 11 regulates prior instructions and which in section 3 states that “instructions contrary to the legal system, to the lex artis, or those that do not correspond to the factual assumption that the interested party has foreseen at the time of expressing it ”. Camps interprets that “this warning implies that the law allows you to put anything, but warns that it may not apply if it is illegal, but when the living will must be applied, not when it was written.” “The Andalusian Government ignores the pain of others and the wills and freedoms of citizens and forgets that the Euthanasia Law is the last link in patient autonomy, which was born in 1986 with the General Health Law, continues in 2002 with the of Autonomy of the Patient and in our community in 2010 with our law of dignified death. In all of them, the will of the patient is placed at the center of medical decisions, ”says Camps.
The Ministry of Health of the Community of Madrid explains that the requirement for ratification is due to the fact that until June “the law did not exist, nor did the requirements it establishes”. The president of the Bioethics Committee of Spain, Federico de Montalvo, endorses the decision taken by this community and the Andalusian. “Faced with a decriminalization like ours, people have been able to change their criteria. The living will starts from a presumption of what happened in the past, but we do not know if it is the current will, what determines is what the patient wanted, not what he wants, that is why it is important that after the law he ratifies again that will ”, he affirms. “The request for euthanasia before the entry into force of the law is invalid because at that time it was an illegal act because it was prohibited in the legal system”, abounds.
The Ministry of Health, however, is forceful: “The framework established by the euthanasia law gives full, full and effective value to the prior instructions registered before the entry into force of the rule,” says a spokesperson. No ratification of the living will is necessary. In fact, this spokesperson adds, the ministry has not found “any norm where Andalusia and Madrid” regulate the need to update the advance directive document: “The information that appears on the website, for example, of Andalusia (in the section of frequently asked questions) does not have legal value that conditions in a real and effective way the consolidated right to the provision of aid to die ”, ditch.
David Rodríguez Arias, Professor of Bioethics at the University of Granada, warns that, in many cases, when a person signs their living will, they are perfectly informed when they express their will to undergo euthanasia in anticipation that the law changes and this person is without powers. “The euthanasia law does not establish that retroactively these decisions can be invalidated,” he says. In Extremadura or Navarre, For example, it is expressly established that the will expressed in the living will will be respected if the applicant is not currently in full use of his or her powers.
Rodríguez cites international studies on the change of mind in those patients who have requested the withdrawal of medical therapies in cases of degenerative diseases. The conclusion is that in 75% of the cases the majority do not change their opinion about the reduction of the treatments in an interval of 18 months and that in the case of the remaining 25%, the majority that modify their intentions do so in favor of may the moment of his death be expedited. “In the cases in which that will has been established in a will, their preferences remain more stable,” he points out.
The professor considers, however, that in cases of Alzheimer’s, where the physical suffering may not conform to the parameters of the euthanasia law on “unbearable suffering”, it would be possible to require the patient to ratify, but in cases of other degenerative diseases such as sclerosis, forcing the person to confirm their wishes “is very cruel.” “Legal clarity, data availability and ethical reflection are necessary,” says Rodríguez.
Miguel Melguizo is a family doctor and associate professor at the University of Granada specialized in End of Life Care and Advance Decision Planning and has registered his living will. “Each autonomous community has a different way of processing the advance living will, in Catalonia it is done before a notary and two witnesses, in Andalusia before a public official who enters the citizen’s statement in an electronic register. The important thing is to grant the maximum legal guarantee for the patient ”, he says.
Melguizo considers that modifying the will to ratify the will to undergo euthanasia does not pose a big problem for those who are in full force, but that it must be publicized so that the interested parties are informed. A different case is if the person who has to ratify it is no longer in possession of their physical or mental faculties. “I think this would be one of the cases that the Guarantee and Evaluation Commission should solve. The experts should determine if their family members are qualified to carry out the ratification or if what was previously stated is valid, ”he says. An opinion supported by the president of the Bioethics Committee.
In Andalusia, however, they would also have to wait. The decree regulating conscientious objection and the guarantee commission was approved on October 19, six months after the deadline stipulated by law. Board sources allege that it was due to legal adjustment issues. Once the regulations have been published, it will be necessary to wait another 15 days to know the name of the members of the commission and a month for the regulations. In this time, 10 people have been interested in the procedure, but DMD has advised them to wait for the Board to develop the pertinent legislation.
With information from Isabel Valdes, Mikel Ormazábal and Jessica mouzo.
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