Pediatric Palliative Care Unit
OBJECTIVE
To provide comprehensive, quality care to children facing serious, life-threatening or incurable illnesses, as well as their families. This care focuses on relieving physical, emotional and spiritual suffering, with a focus on improving quality of life rather than curing the disease.
RELEVANCE
Palliative care is essential to ensure that children with serious illnesses and their families receive the necessary physical, emotional and spiritual support during difficult times, thus contributing to compassionate, quality care.
333 patients attended
STATUS AND SCOPE
ACTIVE
The program is developed at the Sant Joan de Déu hospital.
PROJECT START: 2019
BUDGET
270.000 €
(in 2019-2020)
Dr. Sergi Navarro Vilarrubi, Coordinator of the Palliative Care and Complex Chronic Patient Service of Barcelona's Sant Joan de Déu hospital.
"In palliative care, we combine science and compassion to alleviate suffering and improve the quality of life for children and families with serious illnesses."
ASOCIACIÓN ANITA WITH THE PEDIATRIC COMPLEX CHRONIC AND PALLIATIVE CARE UNIT
There are times when research does not arrive in time, or when there are no effective treatments, and young patients and their families must face a very complicated situation, where a cure is not possible and all attention and care is focused on maximizing the dignity, well-being and quality of life of both the patient and his or her family. At such a difficult time to accept and cope, being accompanied and guided by a palliative care team is fundamental to ensure that all these needs are met.
For this reason, because we have lived it in first person during the illness and in Anita's farewell, because they helped us in a way that we will never forget, for Asociación Anita it is a priority to support the Palliative and Complex Chronic Care Unit of the Sant Joan de Déu hospital, with the financing of innovative projects that reach their homes, such as Telemedicine, Music Therapy and Physiotherapy, and also in the Universitari Vall d'Hebron hospital where we finance the projects of Art Therapy and Music Therapy.
"I never, but never, thought that one day I would need their help, and now, I cannot imagine the end of life of a child without the continuous support of the palliative care unit. We met them when we were told, after countless treatments and operations, that there was no longer an option to cure our daughter. We spent more than a year receiving their care.
Thanks to them, Anita was able to receive the treatment she needed at home, she was able to stop going so many times a week to the hospital, and above all, in the last months and days they supported us, supported us, listened to us and provided us with the necessary tools so that... something that should not happen, but does happen, would pass in the best possible way. Our daughter, at only 5 years old, was able to die at home, in our arms and surrounded by her loved ones. And for what all that has meant to us to this day, we will be eternally grateful."
- Carolina Amado and Fernando Sanchiz (Anita's parents)
Anita at home with Marta and Cris, her nurses from the Pediatric Palliative Care Unit at Sant Joan de Déu hospital in Barcelona.
WHAT IS PALLIATIVE CARE?
"Palliative care is usually related to death, but it is quite the opposite, it is well-being and quality of life, not only at the final moment, but throughout the entire process of a serious and incurable disease."
Pediatric palliative care is a specialized form of care, provided by multiple professionals, for children and their families facing incurable illnesses that will lead, sooner or later, to death.
They consist of active and total assistance to the child's body, mind and mood. They focus on the prevention and relief of symptoms, pain and stress, as well as on supporting the psychological, spiritual and social aspects of the patient and family, and guiding them to receive all possible help in the subsequent grief.
Through continuous and individualized care, pediatric palliative care guarantees the best care and attention to all these children, teenagers and their families, in one of the most crucial moments of the life of every human being, the assumption of death.
This incredible team of professionals strives to meet all the physical and emotional needs of the patient, trying to keep the family "functioning" as normally as possible, including support services for siblings and facilitating rest times for the whole family, as well as promoting beautiful moments of unforgettable bonding, as in the music therapy or art therapy sessions.
HOW IS PALLIATIVE CARE FINANCED?
This Unit has been financed for years thanks to the support of private companies, foundations and patient associations like ours. In 2019, we donated 270,000 € to finance its maintenance and improvements.
In October 2020, CatSalut launched an integrative pediatric palliative care network, formed by the three reference hospitals (hospitals Sant Joan de Déu, Vall d'Hebron and Parc Taulí).
It is a relief to think that funding will not have to be sought each year to guarantee this fundamental right to all children who need it, but the reality is that in Spain there are more than 25,000 children who require palliative care, but only 15% receive it.
Very few Autonomous Communities (State Governments) have this much-needed care.
For this reason, Asociación Anita will continue to collaborate and support this Unit so that they can reach more and more children with more and better care.
