Neonatal palliative care is developing in Portugal. Although there is still a lack of institutionally recognised programs, there is more political support for palliative care.
Awareness activities among professionals, as well as perinatal modules in paediatric palliative care education programs are spreading around the country.
Around 50 professionals coming from the Northern region of Portugal (Oporto, Coimbra and Aveiro) participated in highly interactive sessions.
The audience was multidisciplinary: half were physicians (neonatologists, paediatric pulmonologists, neurologists, oncologists, primary care physicians, internal medicine and medical students), but also NICU nurses, social workers, philosophers and chaplains.
In the first session, Dr Carmen Carvalho guided a discussion about the importance of palliative care in Portuguese NICU, based on the results of a web based survey with a response rate of 70%.
The data gathered underpins the importance of palliative care in the NICU and the need for improvement in professionals’ training and education in this field.
Education and research were underlined as a top priority in the development of neonatal palliative care.
Other sessions included: ‘What do we know about palliative care?’ ‘The importance of education’ (Lincoln Justo da Silva), ‘When should we start palliative care?’ (Joana Mendes) and ‘Research to better understand’ (Ana Lacerda).
Universal basic education for all professionals involved in the care of families during pregnancy and the neonatal period was considered a gold standard to overcome myths and improve collaborative work and advance care planning.
In this second edition of the workshop, the Portuguese Neonatal Society gave a special spotlight to the psychological and spiritual dimensions of care, focusing not only on the family needs but also addressing the importance of self and team care.
Sessions included: ‘Communication – the first step’(Susana Magalhães), ‘Relation-centred care and support’ (Maria José Ferrão), ‘Compassion in Palliative Care’ (Hermínio Araújo), ‘We are all part of palliative care – interdisciplinary approach’ (Bárbara Gomes), ‘Symptom control at the end of life’ (Nuno Farinha) and ‘The family as a place of anguish and emotional chaos’ (Marta Brites).
On the second day, case discussions were facilitated and an innovative role playing took place, based in a real end of life situation.
This activity allowed a safe place to meditate, confront personal, interdisciplinary and institutional constraints, explore different approaches, needs, expectations and feelings and explore how to improve the outcome to families in real life scenarios.