Nothing they do is easy because they only act in extreme situations. In the three years that they have been working as a team, have witnessed 17 deaths of children and adolescents. So crude, so hard is the mission of the pediatric palliative care unit of the Central University Hospital of Asturias (HUCA). Two paediatricians, a nurse, a psychologist and a social worker make up a group that tries to help in situations "for which no one is prepared", as they themselves admit. They help others, but they are also privileged witnesses of unforgettable lessons: "What many families do in those circumstances is incredible," they point out.
“In these three years we have been configuring the work dynamics better and it is now when we present it to our colleagues in the health field and to the whole of society”, explains Antonio Hedrera Fernández, a pediatrician specializing in neurology. He was part of the team that launched a similar unit at the Río Hortega University Hospital in Valladolid. The estimate is that in Asturias there are between 100 and 110 children amenable to pediatric palliative care.
"We want to be with the families in times that are hard for them and for us"
Although it may be thought that oncological pathology is predominant in this type of patient, the reality is that 70 percent of patients present pathologies of neurological origin. "Right now we are treating 34 patients with their families," says Dr. Hedrera. And he adds: “We want to identify all those who can benefit from our work. The idea is that the unit covers the entire autonomous community. This will require networking with Primary Care and SAMU services”.
Lorena Pérez López, a nurse specialist in pediatrics, comes from the HUCA pediatric ICU. She is the one who carries the pager of the group, which makes it the "gateway" to the team and the recipient of every need. “The day to day of these families is very hard. No one is prepared for these situations. The unit is born from the need of many families in complicated situations, with fragile patients, highly dependent, with difficult life situations in which they can be very alone”.
"Unlike adults, they are more heterogeneous patients and they can live not months, but years"
In these contexts of maximum complexity, “Our job is to help and accompany you on this journey”. The work of the nurse is focused on helping families in the management of the boy or girl: cleaning, feeding, managing some devices... “And also serving as a link with the Primary Care network, to ensure that there is continuity in attendance and no information is lost”, specifies Lorena Pérez.
Ana de Lucio Delgado is a pediatric oncologist at HUCA. In his opinion, "This unit represents a great advance for Asturias". Part of its added value is that "we work with a broader concept than usual", which is not limited to providing care in the final phase of life. “Our commitment to children is much broader. Unlike adults, they are more heterogeneous patients and they can live not months, but years. We want to integrate all those cares and needs that go beyond the classics to guarantee that they receive them. They may continue to need care from other specialists, and our mission is to integrate that as well.” Unit members want families to avoid unnecessary trips to the hospital: “If necessary, we will go to their homes. And we try that, if they have to come, they can have all the consultations on the same day”.
“We offer support so that they can express all the emotions that such a strong blow arouses in them”
The work of María Teresa Álvarez Bermejo, clinical psychologist of the Mental Health service, focuses on the gigantic emotional impact that a child whose life is extinguished causes in a family. “We accompany them throughout the adaptive process that this type of diagnosis entails. We offer support so that, from the first moment, they can express all the mixed emotions that such a strong blow arouses in them.”
María Teresa Álvarez invites us to reflect on the drama experienced by children and their families: “Expectations in raising a child change radically. The family has to adapt to extreme conditions, because their life projects falter”. In this type of case, "sometimes there is a single person who assumes a large part of the care, and the concept of caring for the caregiver seems extremely important to us, so that all the members of the family have their space and their leisure time, and can normalize as much as possible such a complex and chronic situation that supposes continuous stress”.
"The day to day of these families is very hard, with fragile patients and difficult life situations"
The needs of patients and their families are not limited to health aspects, emphasizes Nazaret Cordero García from her role as a social health worker. His task is based on a tragic diagnosis. “The family suffers a shock and needs an interdisciplinary intervention. They are situations with many faces. We social workers influence the difficulties in personal life, in family reconciliation, in the lack of social resources...”. Nazaret Codero points out: “It is not that until now these families have not received answers, but they usually need even more than usual. We intend to improve the quality of life not only for the patient, but also for their family and their environment”.
"The family suffers a shock and needs an interdisciplinary intervention to improve their quality of life"
What is the main contribution of the HUCA pediatric palliative care unit? Antonio Hedrera emphasizes "something that families are very grateful for: the closeness of treatment always with the same professionals of reference". And also in accessibility: “They have our phone, they can call if they have any questions, send an email. They know that if they need a consultation at home, we will be there. We want to be there in times that are hard for them and for us."