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.
Lucía Navarro Marchena
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).
Teamwork is essential …
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
EAPC Blog 
Hi, Greetings from the Himalayas. Looking at the pictures and reading through you post, made me think that you have achieved a lot comparing to where we are in Bhutan. Palliative care concept has not yet arrived in our country. There are stories of people banging their heads on the wall in pain, scratching their faces and cutting themselves because of pain, people wishing for an early death, some passing away with unfinished business believing they have a life to live because their relatives/families would not agree health care professionals to give the illness prognosis, some children suffering in pain. Bhutan is a small Buddhist country with strong Buddhist values which include things like pain is due to karma and that suffering in pain cleanses the bad karma resulting in higher rebirth. Such notions hinders the care and therefore brings other forms of suffering such as guilt among the family members, more severe and longer periods of grief and bereavement. Although I teach nursing in a University and my objective right now is to develop a module on Palliative Care to train inservice nurses and other health care professionals. I will work on the module and get suggestions/comments from experts to make it a very applicable in my country. Wish me luck folks!!! Thank you and good day.
Hello, Thanks so much for your interesting comments. Perhaps you would like to think about contributing a post to the Blog about the challenges and obstacles you have mentioned in your comment? Are you already in contact with Dr Suresh Kumar in Kerala who is a great support for neighbouring countries that are keen to introduce palliative care? I am sure you are in touch but if not please let me know and we will introduce you. You can also find some great free resources on the IAHPC website http://www.hospicecare.com (in the Resources section). Best wishes Avril and EAPC social media team.