Celebrating 10 years of Children’s Palliative Care in Portugal with Care and Art

In 2023 Portugal is celebrating 10 years of awareness and service development in paediatric palliative care. It seems like yesterday when e-hospice reported on the stakeholder meeting which started it all (https://ehospice.com/inter_childrens_posts/landmark-ppc-meeting-held-in-lisbon-portugal/).

Back in 2012, though there were a few trained professionals and dedicated services, Portugal did not have any recognized PPC activity and talking about PPC was done behind closed doors.

In 2013, with support from both the Portuguese Association of Palliative Care and the Portuguese Society of Pediatrics, and backing from the Directorate General of Health, a group of committed professionals came together to jumpstart things. Maybe the moment was ripe, as these efforts were very well received into both the paediatric and the palliative care communities.

From the first day, we relied on ICPCN to guide us and to help amplify our voice. Throughout the years we’ve shared and celebrated our victories and have accordingly been moved from level 1 (2012, no recognised activity) to level 4 (generalised provision, legislation, education, and training).

To celebrate a decade of achievements, a growing number of friends (aren’t we all in palliative care?) gathered in the beautiful town of Amarante, for 2 days in September (21-22).

In the pre-event workshops, we planned the usual much needed symptom control sessions, but this time we also offered a very special treat for those who dared it: a full morning working with clown doctors about the art of improv! It was a unique experience and it will need to be back in other events by popular demand.

During the meeting we spoke about our shared history and the challenges ahead; we discussed practical issues and ate a lot of local sweets! In the closing session Dr Richard Hain, from Cardiff, demonstrated that paediatric palliative care does indeed make a difference for those who receive it.

 

 

 

 

 

 

 

 

 

 

But these two days weren’t just about science and food, art was also a big part of the celebration.

When thinking about a way to bring people together, the organising committee devised a quilt – we sent teams a 1x1m piece of cloth for them to express their essence. In the end, it was impossible to sew the squares together (too big, too heavy!), and we just hung them with clothes pin. It was impressive to see how different teams are, some happy, some sad, some proud, some worried. Most squares had beautiful designs and careful craftsmanship and we are now devising a way to preserve this occasion before returning them to their owners for keepsake.

 

 

Yet that’s not all. A longtime friend who is an art curator, Luiza Teixeira de Freitas, had always wanted to do something in the field. She was finally able to do so, as the town of Amarante houses a beautiful small art museum (which celebrates the work of one of Portugal’s most beloved early 20^th century artists, Amadeo de Souza Cardoso: https://www.amadeosouza-cardoso.pt).

Luiza was able to curate a special exhibition out of drawings from her family collection, which she titled From the delicate toil of the needle. This exhibition, which will be open until January 29, 2024, features works from prominent artists from around the world and takes viewers around the walls of a cloister, in a journey from life to death or vice-versa (you can choose which way to go).

The final paragraph of Luiza’s introductory text reads: Reminding us that care is a universal and timeless aspect of human experience, present in the intricate tapestry of relationships and that cultivating this idea in our personal and professional lives contributes to a more compassionate and harmonious world.

Indeed, this is what we have been learning about and realising in Portugal – that through delivering paediatric palliative care to the children and families who need it, we are weaving a tapestry of love that transforms the world we live in.