Unlike adults – who are usually cancer patients in the last phase of the disease – 80% of palliative care children have neurological problems such as cerebral palsy and are not expected to die in the short term.
A pediatrician cares for a child.
The complaint does not come from now. Spain is at the bottom of the ranking of the 51 European countries when it comes to palliative care: it ranks 31st, at the same level as Georgia or Moldova. But if the issue concerns children, the situation is especially bloody. This was evidenced this Thursday by Dr. Olga Escobosa Sánchez, a specialist in the area of Pediatric Palliative Care and Home Care at the Virgen de las Nieves University Hospital in Granada, at the 69th Congress of the Spanish Association of Pediatrics (AEP), which is held until on June 3 in the Andalusian city. The pediatrician has called for “interest and sensitivity” in the face of a very uncomfortable reality: some 25,000 Spanish children are candidates for pediatric palliative care. But only between 15% and 20% receive them.
At the press conference to kick off the AEP Congress, the pediatrician recalled that palliative care is multidisciplinary. It addresses physical, psychological, social and spiritual aspects. “The center of care is the sick child and their families, paying special attention to siblings,” he said. They are care that begins from the very diagnosis of a disease and the teams accompany their little patients throughout their lives. And beyond. Because, later, they also deal with the mourning of those who remain.
“We didn’t get to them. The geographical dispersion makes it unattainable at this time with the resources we have”, the specialists point out.
“The mission is that each and every one of them is properly cared for in their valuable lives,” said the specialist, who complained about the shortage of multidisciplinary teams: palliative pediatricians, pediatric nurses, psychologists, social workers or, if necessary, physical therapists or spiritual agents. He admitted that, in recent years, much progress has been made in the palliative care map, but, he warned, these resources are still insufficient. He gave the example of his city, Granada. They only have a nurse and two pediatricians, and they do not have a psychologist or social worker on the team, which they consider “essential”.
“There is no care in all provinces. We do not reach them. The geographical dispersion makes it unattainable at this time with the resources we have. Many more professionals and units are needed. That there is at least one per province”, pointed out Dr. Escobosa Sánchez who, on the map, placed the Community of Madrid and Catalonia as the communities with the most resources, compared to the scarcity of them in others such as Castilla-La Mancha and Castilla-León, with a much more dispersed population.
In addition, the specialist differentiated the concept of palliative care in the field of pediatrics: while in adults it is mainly received by cancer patients in the last phase of the disease, in the case of minors, 80% of the children given to them have neurological problems such as cerebral palsy and are not expected to die anytime soon. He explained that care is provided to people who have incurable illnesses that are limiting or life threatening. “In the pediatric units we treat children who can live 10, 15 years or even more,” he clarified. For this reason, he said, training is basic. Pediatric palliative care is one of the 22 pediatric specialties that still do not have a defined and official accreditation, which makes it difficult not only to train professionals, but also to provide specific positions for this area, he complained.
The lack of pediatricians
At the meeting, how could it be otherwise, the pediatricians will also talk about the situation of Primary Care. Coinciding with the electoral advance, the AEP has proposed ways of improvement to those responsible who have attended the regional elections and will do so again when the general elections are called, they have pointed out from the scientific society. “The Spanish pediatric model is in danger,” said Dr. Julio Romero González, head of the Pediatric Society of Eastern Andalusia, Ceuta and Melilla (SPAO).
In the four provinces of Eastern Andalusia (Almería, Granada, Jaén and Málaga), he broke down, there are problems common to the rest of Spain: a large percentage of children and adolescents without a pediatrician assigned to Primary Care and difficulty in filling places in rural areas . In Malaga and Granada the situation is somewhat better, with 16% and 18% respectively of children without a pediatrician assigned to Primary Care. However, in Jaén this percentage increases to 52% and in Almería, to 65%, he explained.
At a general level, the president of the AEP, Dr. Luis Carlos Blesa, spoke of the “critical problem” that Primary Care is going through. «The toilets are not chewing gum. Either the demand for care is adapted and the public system is reinforced by providing it with new resources, or we will see the collapse of the first level of care and the rest of the levels by extension”, remarked Dr. Blesa.
The deficit will grow since the retirement of one in four primary pediatricians is expected in the next five years, warn professionals
It is estimated that up to 30% of children are cared for by professionals who are not paediatricians due to the lack of at least 1,300 pediatric professionals in health center consultations. The deficit will grow since the retirement of one in four primary pediatricians is expected in the next five years. “It is a problem of great depth”, highlighted the pediatrician in the framework of a meeting in which, also, the experts will analyze, among others, the advances in the investigation of pediatric diseases and cutting-edge treatments, the mental health of children, food allergies or childhood insomnia.