Last year, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, we published a series of posts about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families. This week we bring you two more contributions from Ukraine and Spain.
Today, Lucía Navarro Marchena tells us about the work of the paediatric palliative care unit at the Hospital Sant Joan De Déu d’Esplugues, Barcelona, Spain.
After the death of a patient due to a neurodegenerative disease, his mother told us:
“If I had known that my child would have this disease, I would be his mother once and one thousand times.”
This feeling of love and support gives sense to our work and explains our aim of caring our patients until the end.
In Spain, about 3,000 children die every year. There are almost 400 deaths in Catalonia, and most of them are expected. Unfortunately, not all these children have access to a paediatric palliative care unit for symptom control allowing them to die at home with their families. (In Spain we do not yet have paediatric hospices, and there are not enough primary health resources to provide care at home. This makes death at home very difficult unless you have support from a paediatric palliative care unit. In our experience, most of the families we support prefer that their child is supported at home and our goal is therefore to support them in achieving this).
The Paediatric Palliative Care Unit at Sant Joan de Déu Hospital (Barcelona) was established in 1991, thanks to the initiative of the Brothers Hospitallers of Saint John of God, and is the first of its kind in Spain.
Our unit provides 24/7 care, 365 days per year, for children throughout Catalonia. We look after children at home and in those hospitals where patients have palliative needs (paediatric oncology, neurology, paediatric intensive care unit (PICU), neonatal intensive care unit (NICU).
In 2015, the unit developed a project that enabled an increase in staffing levels to three paediatricians, four nurses, and a full-time social worker and psychologist. Mostly because of this, last year we supported more than 100 families (see Figure 1 below). In addition, we have a spiritual advisor who works across the whole hospital.
Teamwork is essential. The health professionals make their assessments and then put them all together to design a comprehensive, therapeutic plan according to common goals. This enables us to look at the patient and their family as a whole unit and to give them the best possible care.
The paediatricians are responsible for controlling symptoms, making decisions, managing the information and prescribing. Part of the nurses’ role is to be aware of, and respond to, patients’ needs as well as making sure that their symptoms are controlled and providing healthcare education to our children’s families.
The role of the social worker is to manage the social context and family dynamics when a patient is admitted to the palliative care unit (family structure, support network, socio-economic and employment situation), by detecting all the social factors that could disturb the patient care progress.
The psychologist’s role is to help patients and their families to manage their emotional distress during the final stage of the disease.
We also provide spiritual support, helping the family and child to understand their inner thoughts, to give voice to their questions and meaning to their answers, and to find elements of hope for every difficult moment.
We work closely with healthcare services and schools, and because we try not to disrupt the children’s routine we can also visit them there.
We have a long way to walk – a lot of things to improve. But we’ll keep working hard, step-by-step, to give the best care possible to our patients and their families. Because they deserve it.
Links and resources