Paula Diaz is 19 years old and already wants to die.
This young Chilean woman, originally from the city of Talca, in the south of Santiago, has suffered since the end of 2013 a strange condition that, until now, the medicine of her country has not been able to diagnose conclusively.
According to the family, for more than four years and, increasingly, Paula has presented involuntary movements, loss of consciousness, paralysis of her limbs and, above all, a pain that the young woman describes as unbearable.
A video uploaded by his mother and sister earlier this month to social networks shook Chile and reverberated beyond its borders.
— #JusticiaParaPaula (@DescansoParaPau) February 2, 2018
In it, Paula, in a desperate way, asks President Michelle Bachelet to authorize euthanasia (banned in the country), because she no longer resists the pain, because she does not want to continue living like this.
” I have no rest, it’s something so terrible that I can not rest, neither day nor night (…) I can not stand my body anymore, I can not stand not being able to support it My body is torn, I can not support any part without it hurting or not break, how can they not understand that I can not anymore, “he says in his message to the president.
It is accompanied by other videos with images in which the young woman is seen, apparently, before presenting these symptoms and, in others, twisted in a bed, with her limbs jammed and almost always hospitalized and with an afflicted expression.
In a few days, the videos went viral. More than a million people have seen them and the opinions were divided and put on the table again the issue of euthanasia in the country, where already in 2014 a similar case of a girl who asked Bachellet’s death had impacted on the opinion public.
The issue came again to the Chilean media and other countries, and even to the agenda of some politicians, who have used the case to renew the debate on the legalization of assisted suicide in the country.
However, unlike the case of 2014, Paula’s has also generated uncertainty for other reasons.
The vagueness of the information about his condition, the absence of a conclusive diagnosis and a medical opinion that attributes a strange psychiatric disorder that would generate the symptoms he claims to feel, have made the traditional controversy over euthanasia in Chile this time unexpected nuances.
Vanessa Díaz, Paula’s sister, explains to that everything started at the end of 2013, when the young woman was hospitalized for symptoms that doctors associated with a convulsive cough.
The mother and sister of the young woman have a theory about the possible causes of what happened.
“We as a family tend to relate that Paula in 2013, a little before falling in hospital, received a trivirical vaccine that covers three types of diseases (diphtheria, tetanus and convulsive cough) and my sister fell precisely hospitalized first by a supposed cough convulsive, “argues Vanessa.
He adds that they, and “some doctors who did not write it, but they said it”, consider that a virus of the vaccine lodged in the marrow of Paula and caused the current condition.
The accusation of the family against the vaccine has also generated questions in Chile, where immunization is mandatory.
Dr. Miguel Kottow, head of the Bioethics Unit of the School of Public Health of the University of Chile, assures that there is no record of something similar in the country, but considers that it is a delicate accusation.
“It is an issue in itself very serious, since any decision taken in this case puts into question the issue of mandatory immunology,” he told.
According to the sister, after the vaccine and hospitalization, Paula’s situation worsened .
“From then on, she began to present a series of symptoms that were not associated with cough, she lived through a series of hospitalizations, she was in many clinics hospitalized and began to lose mobility in her legs, arms, her legs were stiff, hands, lost mobility, sensitivity in some parts and in others feels a lot of pain, “he explains.
Since then, according to Vanessa, Paula has been attended by dozens of specialists without having found a cause for what she claims to feel.
“His last diagnosis was in 2015, in which he said he has neurological damage and is also degenerative , but we have never been told it is because of a certain disease or what causes it,” he says.
According to the Chilean newspaper El Mostrador, the certificates from the different clinics that the young woman went through since 2013 read diagnoses ranging from obstructive bronchitis, pneumonitis, laryngeal erythema to others such as major depressive syndrome, hearing loss, scoliosis, ataxia, conversion syndrome severe or postvaccine encephalitis .
Hence, the family considers that Paula has been the victim of poor medical care.
“What we demand is justice for my sister because we know that there have been negligences involved, we demand that an investigation be opened to find out what happened to her that she was a completely healthy girl and that she is now in a deplorable state he who asks to die, we want to know what caused her to have this brain damage, “Vanessa asks.
The truth is that the family has not shown to date the medical diagnosis test that attributes the degenerative neurological damage that they argue and the clinic where apparently it was diagnosed is forbidden, for reasons of privacy, to reveal details of patients’ illnesses .
That is why, according to Dr. Kottow, one of the ethical dilemmas of this case is that the information surrounding him is very ” vague and precarious “.
“Until now, what we have is what the family says, but what they are saying is not showing it, we do not really know what happened in these medical services, whether there was negligence or not, if there were disagreements between the family and the family. treatment, if there was this diagnosis or what conclusions the specialists came in. These are factors that must be taken into account before arguing whether medical care worked or not, “he says.
The diagnostic dilemmas
But the uncertainty about the diagnosis of brain damage increases with another of the medical reports that the young woman received at another renowned Chilean hospital.
“In her third hospitalization, at the Bicentennial Clinic, she was given a series of tests and the conclusion was that there was no neurological damage and we were informed that my sister had a conversion syndrome and that she was causing her same body those symptoms, “says Vanessa.
The syndrome or conversion disorder is a strange psychiatric condition that generates a symptomatology that resembles a neurological ailment, although it does not come from any known physical disease.
According to the American Psychiatric Association, one of the main difficulties for their treatment is that neither the patient nor the family members recognize the condition, which can lead to social isolation, delay in schooling in children, and, in some cases, complications such as prostration and contractures.
In the hospital, after that diagnosis, they offered to refer her to a psychiatric clinic for treatment, but the family rejected him for not agreeing with the opinion.
“We know my sister, she was a healthy girl and she did not have any problem, we know it’s not a psychiatric problem,” says Vanessa.
The family, she adds, has refused to submit the girl to new medical studies since 2015 and decided to support her now in her euthanasia application.
“We are respecting the will of Paula and we do not want to continue forcing her to go through hospitalizations, because as she was a supposedly psychiatric patient, in many moments she was questioned about what she had, she was treated like crazy or out of her mind and she does not want to go through the same thing again, “he says.
“She has been bedridden for more than four years, enclosed in four walls, and is no longer able to sit in a wheelchair to move and move from her room, what she is living is not right, seeing her body fail every day even more and he already has so much pain that he just wants to die, “he says.
She also alleges that due to Paula’s situation, her mother was forced to abandon her job and now the family suffers from economic shortages.
“My sister sent a letter to the president in late 2017, but we did not get an answer, so my mother asked for help from a senator from the Republic who read the letter in Congress and despite that we did not receive much response, just that he was going to be provided with a monthly grace pension, “he explains.
The debate on euthanasia
The truth is that the case has reactivated the debate on the issue of euthanasia in Chile, where abortion was previously approved on three grounds and the reinstatement of the death penalty is also discussed.
The deputy of the Liberal Party Vlado Mirosevic has been one of the standard bearers of the debate on the issue of assisted suicide in the country in recent times and the case of the young woman has been one of the examples she has recently used to legitimize the need for analysis of the topic in the Congress.
“The point here is to respect the right that Paula or any of us has to a death with dignity, first of all a right, where the decision of the individual must be placed above that of society,”
“But it is also a humanitarian issue, one of compassion, of putting oneself in the other’s shoes.” Put in those circumstances, each one must make the decision about euthanasia, and not a law that uniformly and authoritatively leaves no room for dignified death, “he adds, although he acknowledges that he had no information about the young woman’s psychiatric diagnosis.
Dr. Kottow, although he considers that the debate on euthanasia in Chile and its approval is not only ” relevant but necessary “, dismisses the need to value or take as an example the case of Paula, as is happening, to want to legitimize the approval of this medical practice in the country.
“In this situation we would be talking about a case of medical euthanasia, that is, that should be executed by a doctor, and if there is no diagnosis, as with this girl, the whole case collapses ,” he explains.
“Before thinking about an extreme solution, which is not possible because it is not allowed by the Law and neither the president has the authority to allow it , first it would be to determine what it has in reality, whether or not it is treatable, whether or not it has a negative prognosis. , and based on what the application for euthanasia is being considered, “he adds.
According to the also member of the Board of Directors of the Chilean Society of Bioethics, it would be “very bad precedent” to open a path to assisted suicide with this case, given the number of unknowns and irregularities in access to information about Paula’s situation.
“So far, the only information we have is videos on social networks, but this is not something that will tell us much about the real situation.” Based on a video and a family opinion, no conclusions can be drawn, although be only ethical, without legal force, this is a case that we must analyze beyond goodwill or compassion, “he says.