Report on 4th Global Gathering Maruzza Paediatric Palliative Care Congress in Rome

Dr Franca Benini and Sylvia Lefebvre D’Ovidio at the opening ceremony for the congress

Education Officer for ICPCN, Alex Daniels, attended the recent 4th Global Gathering Maruzza Congress on Paediatric Palliative Care held in Rome. She shared the following report back on the congress with ehospice.

Recently I attended the 4th Maruzza Congress held at Auditorium Antonianum in the city of Rome, Italy. It was my first visit to the Congress and following a full day of pre-conference activities, the tone of the opening ceremony in the evening of Wednesday 24th, prepared me for a memorable gathering. Nearly 400 delegates from over 40 countries and 5 continents gathered in the Auditorium to be warmly welcomed by Franca Benini and Silvia Lefebvre D’Ovidio on behalf of the Maruzza Lefebvre D’Ovidio Foundation.

Thinking outside the box

In keeping with the conference theme “Thinking outside the box”, Ross Drake commenced the evening’s programme by facilitating a fascinating double interview with the incredible Caterina Albertini and Stefano Spigler on “The Importance/Meaning of Time”.   The illustrious Joanne Wolfe received the Vittorio Ventafridda Award and in her key note address she discussed CPC as a game changer for paediatrics as a ‘disruptive innovation’.  Another CPC milestone was reached with the launch of “Integrating Palliative Care and Symptom Relief into Paediatrics “, a WHO guide for health care planners, implementers and managers.  Cho Hee Kim received the No pain for Children Awards 1st prize winning abstract for “ Pediatric death attributed to life-limiting conditions in Republic of Korea: exploring the nation-wide pediatric palliative care needs “ and the best video children’s hospice was awarded to Nino Kiknadze for Firefly World.

The following day delegates were treated to a range of engaging poster presentations and informative break away sessions. In the morning plenary session, David Steinhorn traced a fascinating history of Galenic medicine and traditional remedies. Stephen Connor contextualised the global CPC issue: over 21 million children requiring palliative care of whom 98% live in LMIC – these figures came up repeatedly throughout the conference. In his presentation on drug routes and approaches, Sat Jassal encouraged delegates to work in a collaborative form and stressed the need for good quality research. Finella Craig and Myra Bluebond- Langer raised important considerations around the needs of young adults and transitioning. The opportunity to network, share and learn from each other was highlighted by Julia Downing in a breakaway session entitled Networking to increase access to CPC: the ICPCN experience. Stefan Friedrichsdorf ‘s networking session was the cherry on top of a perfect day, he hooked his audience, shifted attitudes , provided new knowledge and skills in an engaging presentation on Preventing or Reducing Needle Pain for Hospitalized Children.

Day two

Alex Daniels with her poster presentation at the congress

Day two of the conference offered delegates more high quality research with poster and oral presentations but once more it was the plenary sessions that stood out for me. Daniel Garros highlighted the significance of getting to grips with the life values of each patient and their families in the PICU setting. In an outstanding session on PPC and Paediatric specialities which provided plenty of food for thought. Richard Goldstein raised the issue of uncertainty in children without a diagnosis and disclosed that grief and bereavement was worse in those families where there was no diagnosis. Michelle Meiring drew attention to the poor distribution of doctors across the globe, the devastation chronic communicable diseases still caused in the developing world and the need for collaboration with infectious disease specialists to address this issue.  Ana Lacerda raised the need for palliative care education and training in all areas of paediatric oncology and the understanding of culture as fundamental to collaboration between paediatric oncology and paediatric palliative care practitioners.

Final morning

On the last morning of the Congress in an informative presentation entitled The Representation of end of Life: Media and PPC, Matteo Asti encouraged us to consider how we advocate and promote PPC.  In the final session of the morning facilitated by Ann Goldman and Justin Baker what was new in PPC was examined. A range of both personal and professional perspectives were shared by an interesting panel of individuals notably Omar Leone who shared his touching and insightful personal journey. In addition Kevin Kajitani and Akira Fukabori, young innovators in the aviation industry explored avatars as real live physical systems with seemingly endless opportunities to expand human experiences.

Despite a full Congress programme which served to increase knowledge, expose delegates to new experiences and innovative approaches in the development of paediatric palliative care, networking over refreshment breaks was perhaps the Congress’s greatest strength. I thoroughly enjoyed meeting new people from all parts of the globe whilst sampling a variety of delicious Italian food and drink. Thank you to the organisers for a great Congress!

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