Portugal has been classified as a level 1 (no provision) country regarding provision of paediatric palliative care, the only in Western Europe to be so. While it is true that no official provision exists (there are no specialised paediatric teams or hospices) and that the development of paediatric palliative care services is not specifically envisioned in the current national palliative care policy, it is not fair to state that Portuguese children are being completely neglected. In the past years several Paediatric Departments have developed isolated initiatives to help children with complex chronic conditions and their families.
At the Paediatric Department of the Portuguese Oncology Institute – Lisbon Centre, since 2005 Dr Ana Forjaz de Lacerda has been leading an interdisciplinary team that focuses on continuity of care and holistic support from diagnosis, not just at the end-of-life stage. It has developed a network of collaboration with the regional hospitals and GP practices, as well as the existing adult-focused home care teams. Efforts are put on education of healthcare providers and family carers, regarding both palliative and oncological care. This work has been supported by the publication of several Portuguese language handbooks for all involved. The November 2012 edition of the family’s palliative care handbook was also distributed to the other three Paediatric Oncology Units in the country. At the 1st European Congress on Paediatric Palliative Care held in Rome in November 2012, Dr Lacerda presented the results of this work. For the children that died of progressive disease from 2007 to 2011, enrolment in the palliative care programme meant a significant increase in the odds of dying at home (OR 2.6) or at the local hospital (OR 5) compared to those that were not enrolled. The length of last stay, when dying at the Oncology Unit, was also decreased (median 5.5 vs. 8 days). This work was launched by a grant from Fundação Calouste Gulbenkian and continues to be supported by Fundação Rui Osório de Castro.
Similar work has been in place since 2009 at the Oporto Centre of the Portuguese Institute of Oncology, under the co-ordination of Dr Ana Maia Ferreira. In Oporto, the team has been able to count on help from at-home volunteers from Acreditar (the parent’s and friends association for support of children with cancer) – project Arco-íris (Rainbow). It is expected that during 2013 Arco-íris will also be in place in Lisbon.
Valuable work providing hospital-at-home for children with other severe chronic illnesses is provided by several Paediatric Departments, with financial and logistic support from Fundação do Gil. These mobile units (UMAD’s) work in Greater Lisbon – Hospital de Santa Maria, 2006, Hospital de Dona Estefânea (Lisbon Children’s Hospital) and Hospital Fernando da Fonseca, 2009 – and more recently also in Oporto – Hospital de São João, 2011.
In the past few years there has been a growing interest from several sectors to increase knowledge and practice about paediatric palliative care and putting this into practice. For instance, Dr Lacerda has been invited to speak about her Department’s experience to GP’s, to nurses, in Masters sessions, at post-graduations, etc. Paediatric and adult healthcare providers are very interested in replicating the holistic approach from diagnosis and to change attitudes about caring for terminally ill children. The time is ripe to advocate for the development of formal paediatric palliative care services, since the national palliative care law is to be discussed in the next months.
Ana Forjaz de Lacerda is a paediatric oncologist at the Portuguese Institute of Oncology – Lisbon Centre; she has developed a special interest in palliative care and is currently a student at the King’s College London / Cicely Saunders Institute where she is studying for a MSc in Palliative Care.