Pediatric palliatives: ‘May the time of this life be the best it can be’ – EFE News


Oviedo (EFE).- “Let the time that life lasts be the best possible”. The Pediatric Palliative Care Unit of the Central University Hospital of Asturias (HUCA) works for this purpose, a service provided by a multidisciplinary team that offers care and support to 48 children and adolescents and their families.

The work of this group of professionals – made up of a pediatric neurologist, a pediatric oncologist, a pediatric nurse, a health social worker and a clinical psychologist – will be honored today by the 5th Humanization of Healthcare Award, granted by the Royal Academy of Medicine and Surgery of the Principality of Asturias.

May no child be left without this type of care

The unit, presented this year, but which began its first work in 2018, has treated more than seventy patients, including twenty who have already died and five transferred to adult palliatives at their majority.

“There would be approximately 112 patients who would be eligible to receive this type of care per year. The goal is for people to know better that we exist so that no child with these needs is left unattended,” underlines neuropediatrician Antonio Hedrera in an interview with EFE.

The specialist maintains that, contrary to general perception, only a third of the pediatric patients they follow are oncological, given that the majority suffer from serious neurological pathologies, such as cerebral palsy and other encephalopathies.

It is thus a question of specific support which can last for weeks, months or years and which is provided by a unit which provides a telephone service, every day from 8:00 a.m. to 3:00 p.m., at home, for those who “cannot move”. around gravity”, and hospital, in case of admission or in outpatient clinic.

“This availability is a plus that promotes follow-up for better patient care”, specifies Hedrera, after pointing out that this care is possible thanks to networking with the various services and units of the health complex, with the rest of the care facilities of the Principality Health Service (SESPA) and with other hospitals in Spain.

Give every family what they need

The doctor explains that pediatric palliatives have “very big differences” compared to those received by adults, since it is a care for patients with a “very variable” age range and in a process ” scalable”, and with “radically different drug and therapy possibilities.

Also the way in which this process is faced varies according to the age of each patient: “When they are younger, they know they are sick, but perhaps until the last days they do not know what is going on. acts. Older boys are more aware of the dying process…”

Hedrera points out that, generally, families prefer to receive help at home in this last phase, because it is a “closer” place and where the little ones can be surrounded by their “brothers and sisters, their objects of attachment, their toys…”, although there are others who choose to remain in hospital.

Thus, he emphasizes that, from a “spiritual or psychological” point of view, this coping “varies a lot from one family to another”, because the most important thing is to give everyone what they need.

At this point, he highlights the role of the team to address “all dimensions” in each case, from meeting “emotional or psychological needs” to helping families with bureaucratic processes or other types of support. related to social services. .

An accompaniment that goes beyond the illness and reaches the stage of bereavement: The team is present in the moments “closest to death”, but also “in the longer term during the first year”.

“For the needs that may arise in this difficult time,” says Hedrera, who claims, as a main demand, that the unit has a full-time pediatrician.

The specialist values ​​the importance of making this type of situation visible so that society “become aware”, offers its support and protects those affected by an infant death, for many, still a taboo.

“The most important thing about receiving this award is not the award itself, but that society in general knows that this problem exists. I wish pediatric palliative units weren’t needed, but children are dying of diseases that have no cure,” he says.

“You think you’ve done something worthwhile”

The director of the Pediatric Clinical Management Area of ​​HUCA, Corsino Rey, points out that this type of unit is born from the “enthusiasm” of health professionals, who must fight to “develop and equip them” .

The health worker acknowledges the hard work they do there, but when patients “receive adequate care, it makes up for everything”.

“Often the most difficult patients are the ones that give you the most satisfaction. That a family, after the death of a child, comes to the hospital to thank you… It makes up for everything,” says Rey.

Hedrera expresses himself in the same sense, evoking the moments of “sadness” that this type of situation entails for his team. “But the families are very grateful. You think you’ve done something worthwhile.” EPE

Web edition: Gorka Vega.


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