A few miles away between her home and the hospital embittered Josefa's last months in this world. With 76 years and a colon metastasis invading its organism, this neighbor of the municipality of Cuntis (Pontevedra) of fictitious name the Galician health service denied the specialized palliative care to which the law gives right because its domicile, the place where He waited for the end of his days, he was more than 25 kilometers away from the hospital center, located in the provincial capital. "It is outrageous to see that your mother does not have decent conditions to die just because of living in a rural area, it is an absolute discrimination," laments her daughter Pilar Campos.
If the patient lives somewhere in Galicia that is at a distance from the hospital of more than 30 minutes each way, the work to alleviate the suffering will not be in the hands of specialized teams but primary care personnel "who have not received training in palliative care ", explains Marcelino Mosquera, president of the Galician Society of Palliative Care. "There are people who die at home and die badly," admits Mosquera. "Not because the doctor does not go, but because there comes a time when that doctor says that nothing more can be done and what really happens is that he can not do anything else with the training he has."
Death is going to get worse in Spain. The Spanish Society of Palliative Care (Secpal) estimates that in 2015 there were 54,000 people They faced the final stretch of their lives without access to specialized care that reduce as much as possible his sufferings and those of his relatives, today that figure is around 75,000. In a society that ages at a forced pace and in which loneliness extends, health workers explain, public resources to alleviate pain in bodies that go out slowly are getting shorter and shorter. "There is a lack of means and inequality in the access to resources in practically all the sites," denounces Isidro García Salvador, palliative nurse in Valencia and vice president of Secpal.
Now that the PP promotes a state standard on palliative care In response to the regulation of euthanasia promoted by the PSOE, the Secpal explains that in these treatments what "are missing are means, not laws." In Galicia, the law on the rights of the terminally ill that was approved by the PP Xunta in 2015 at the proposal of the Socialists clearly guarantees "comprehensive quality" palliative care, either at home or in the hospital, as each one prefers, to all Galicians suffering from a serious, irreversible or fatally ill illness. Three years later, the reality of death beyond the official bulletins is very different.
Pilar Campos complains that the primary care staff who attended to her mother in Cuntis "did not measure up" and the family doctor "went home very early in the morning." "We felt helpless, we did not know what to do," she says about the anguish suffered by her and her brothers, focused on caring for her mother day and night during the four months that passed until Josefa died in 2017. "I was in terrible conditions because, although we cared for her with love, family care is not the same as the professional one ".
Regarding the lack of training of primary care professionals who denounce patients and scientific societies, the Department of Health of the Xunta de Galicia responds that in the community 390 "referring professionals" have been trained who are in charge of "supporting, advising and give support to other professionals of primara care in the field of palliative care ". In eight years, adds the Galician Government, 3,758 health workers have received courses "on different aspects related to palliative care", 85% of them from health centers.
"Tumbling" through the system
The home of each one is in most cases the ideal bed to say goodbye to the world and the one usually preferred by the sick. But it requires a palliative assistance service that can be used 24 hours a day. In addition, not all citizens live near a hospital and, like Galicia, other territories such as the Valencian Community or Aragon put limits on these care based on the postal code. According to the professionals of these devices, the Aragonese Government has palliative care teams at home that divide the territory to cover all the municipalities but, except for one of them that serves an area of Zaragoza, they only work in the morning and the At the rest of the time, attention is diverted to primary care or 061.
To resolve these discriminations, the experts demand that health center staff be trained in this discipline. "Distance is a problem; you can not do 100 kilometers to see a single person because it is not economically viable, "admits García Salvador from the Secpal. "What we are asking for is training in primary care so that they attend most of the cases and only the most serious ones fall on hospital equipment."
The scientific societies of palliative care denounce "great differences between the resources of urban and rural areas" and disparities of means between autonomous communities and even provinces. Not even the requirements to enter a specialized team are the same throughout Spain and only Andalusia and Castilla y León have taken steps to create the occupational category of palliative care. Many times, lament from the Secpal, teams "can not cope" and patients are referred to these treatments "very late", when they are already in the agony.
Dr. Marcelino Mosquera directs the Palliative Care Unit of the public hospital of Ferrol, a department where, as in the rest of Spain, only one in five patients suffers from cancer and in which it has had patients receiving these treatments for two years. Advocates that specialized care at the end of life extends not only to homes but also to all corners of hospital centers. There are patients, he warns, who die in the corridors of the Emergency Room because they are subjected to "absurd" protocols of evidence when what they need is help to be able to die in peace, either something that takes away the pain or a conversation that relieves them The anguish. They are patients with chronic diseases that "go tumbling through the system" because their specialist doctor no longer knows what to do with them.
Mosquera describes the case of patients with Chronic Obstructive Pulmonary Disease (COPD). At the end of life, the bronchodilator drugs prescribed by the pulmonologists are no longer effective and those bronchial tubes that the medications no longer open cause fatigue, insomnia and depression in the patient. The affected person ends up in a bed, with his family desperate and his doctor telling them that "there is nothing to do". "Yes, there is something to be done: palliative treatment," stresses the president of the Galician Societies of Palliative Care.
Gloria Rabanaque is a rural doctor in the Alto Palancia, a region of Castellón of 27 scattered villages and with a quarter of its 25,000 inhabitants carrying over 68 years behind her back. Many of them live alone, "suffer from multiple pathologies and are polymedicated", an end-of-life scenario that extends throughout Spain. As in the Valencian Community, hospitals also set limits on travel to provide palliative care at home, she has been concerned about training in this care because "accompanying in the last few days is important". "40% of people die in Spain with inadequate care," he says. "They die in one way or another depending on the training and attitude of the primary care professionals who serve them."
Rabanaque is head of the comprehensive health center of Segorbe, the county seat, a large ambulatory that, as she explains, has a palliative care guide and holds training sessions. "We are trying to reach all the sites," explains this doctor, who claims more investment in primary care and Continuing Care Points (PAC) because home hospital equipment can not replace it. For these treatments it is required, stresses, "aptitude and attitude" and "there is a high percentage of doctors who are not interested in the subject or do not feel prepared".