The 1st Portuguese Meeting of Paediatric Palliative Care, held in Lisbon on 2-3 October 2015 was a huge success! With more than 400 delegates from over 90 different institutions (and including participants from Germany, Mozambique, Brazil and Spain) you could feel the enthusiasm and warmth for children’s palliative care.
The Global Atlas of Palliative Care, published 2014 by WPCA and the WHO, listed Portugal as the least developed Western European country, lacking in organised service provision. For this reason it was considered urgent to raise public awareness of unmet needs and educate and train healthcare professionals across the country and this meeting was long overdue.
The organisation, led by the Portuguese League Against Cancer (Southern section) with the collaboration of the International Children’s Palliative Care Network (ICPCN), the Pediatric Taskforce of the Portuguese Association of Palliative Care, the Continued and Palliative Care Taskforce of the Portuguese Society of Pediatrics and the Portuguese Directorate-General of Health, was highly praised by all present, for providing this unique opportunity to develop competencies and networking for quality care of children and families with palliative care needs.
The venue, the Great Auditorium of ISCTE – University Institute of Lisbon, was considered outstanding. It must also be noted that the two translators (there was simultaneous translation (English – Portuguese and Portuguese – English) offered their work pro bono on Saturday.
The meeting was preceded by four very well-attended workshops, (160 people in total), lead by well-known international experts as well as local teachers.
The workshops held were as follows:
- Ethical questions in palliative care: Richard Hain and Joana Mendes (neonatology nurse, PhD in Bioethics)
- Social and spiritual accompaniment: Manuela Paiva and Fernanda Ferreira (paediatric and adult oncology social workers)
- Communicating with the child and family: Joan Marston (ICPCN’s Chief Executive), Silvia Ramos (nurse, MSc in Pall Care, currently a PhD student) and Inês Alberty (psychologist, mother of a 4 yr child with a life-limiting illness)
- Team development and support: Danai Papadatou and Helena Salazar (psychologist, MSc in Pall Care)
Little Stars Film opened the meeting
The opening session, on October 2, was attended by several of the major stakeholders in Portugal. Ana Lacerda, head of the organizing committee, substituted her opening speech by one of Little Stars short movies “Why should children suffer” – the room just fell silent, overwhelmed by the need and the responsibility.
Secretary of State for Health
Joan Marston introduced the Hats on 4 CPC campaign, and everyone in the table wore a hat! This included the Portuguese Secretary of State for Health, Dr Fernando Leal da Costa, who gave an enthusiastic speech about what he sees as the current needs of Portuguese children and families and what he hopes will happen in the near future, fueled by the recent publication of a report he commanded in 2014 soliciting a national strategy for the development of paediatric palliative care services in the country.
The report recommends a governance model sustained by four pillars: education and training of all professionals involved in the care of children with life-limiting and/or life-threatening illnesses, provision of homecare services, reorganisation of existing paediatric beds (as a more sustainable and appropriate alternative to the development of stand-alone hospices) and effective communication between all healthcare providers.
The Secretary of State praised the quality of the report, completely agreeing with its conclusions and recommendations. Furthermore, he announced that he has already given instructions for immediate implementation of education and training, as well as homecare services.
The meeting’s two days were packed with conferences and roundtables. In the conferences, the audience was captivated by the passion and expertise of the international speakers.