This is the second part of the report on progress in paediatric palliative care (PPC) in Portugal after the1st Paediatric Palliative Care Meeting held in Lisbon at the beginning of October. The first article covered an outline of the event.
A series of roundtables were held , the first one was devoted to the “Discussion of the Portuguese strategy for the development of PPC”. Ana Lacerda led the presentation, commented on by the presidents of the Portuguese Society of Pediatrics and the Portuguese Association of Palliative Care, a representative of the GPs and the national coordinator of the National Pediatric Health Program (Directorate-General of Health).
Dr Lacerda presented a print version of a 20-page brochure for caregivers and the launching of a Portuguese website dedicated to information about PPC.
The brochure, to be distributed nationwide with the help of the Directorate-General of Health, was developed through the joint efforts of the two groups that Dr Lacerda coordinates, the Taskforce of Continued and Palliative Care of the Portuguese Society of Pediatrics and the Pediatric Group of Portuguese Association of Palliative Care. The work was supported by the Portuguese League Against Cancer and by Happy Brands. A donor that wishes to remain anonymous generously offered to pay for the printing.
Attractive brochure design
In a simple language, an attractive design and photos and statements from several Portuguese families, the brochure informs carers about the purpose and true meaning of PPC. Together for Short Lives was kind enough to allow the inclusion of two parts of their booklet “A Family Companion to the Together for Short Lives Core Care Pathway for Children with Life-limiting and Life-threatening Conditions” (3rd edition, 2014), which was translated and adapted. Several Portuguese families and healthcare professionals reviewed it for appropriateness and clarity. The brochure can now be downloaded from ICPCN’s website for use in all Portuguese speaking countries.
New website
The development of the website www.cuidandojuntos.org.pt by the same groups, was only possible due to the efforts of aTTitude, a Portuguese NGO dedicated to social entrepreneurship, which recently embraced the cause of PPC with a project named “Vamos cuidar”. Alongside the site, aTTitude also prepared a 10-minute video to introduce the theme to families and professionals.
Turning point
The other roundtables (which included the participation of families) were also very lively, especially the one on peri and neonatal care, which raised many questions and touched many hearts. It was especially touching to hear a mother of twins, one dead in utero, the other to be born premature, speaking of how she was approached in the delivery room, when she was asked for details of her son’s funeral.
The audience expressed a strong desire for another meeting with the return of passionate and knowledgeable speakers. The overall feeling was that this represented a turning point from which there is no return, and that PPC will really take off in Portugal. Everyone who attended left with the certainty that he/she must do something in their workplace to meet the needs of children with complex chronic conditions and their families.
Little Stars Movie
The following Monday, October 5, as a way to start the celebrations of the Palliative Care month at the Lisbon Centre of the Portuguese Institute of Oncology, there was a public exhibition of the Little Stars movie.The film had Portuguese subtitles translated by the Taskforce of Continued and Palliative Care of the Portuguese Society of Pediatrics and the Pediatric Group of Portuguese Association of Palliative Care.
Around 70 healthcare professionals and volunteers attended, most not related to children. The film was considered very touching and realistic, and very clearly highlighting the added value of palliative care to the life of people with life-limiting or life-threatening illnesses, not only children. It was suggested it should be mandatory viewing in many settings, including high schools, undergraduate and postgraduate healthcare schools and as many as possible public locations.
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