What started in Helsinki doesn't stop there.
From 29 to 31 May, over 2,000 professionals from across Europe gathered in Helsinki for the annual European Association for Palliative Care (EAPC) Congress. With the theme ‘Ready for the Future’, the spotlight was on innovation, collaboration and global solidarity. Paediatric palliative care played a visible and meaningful role. What started in Helsinki does not stop there.
Compassionate technology
Philosopher and data scientist, Jan Romportl, opened the congress with a thought-provoking keynote on AI in healthcare. His message was clear: the question is not ‘Can we do it?’, but ‘Should we?’ In paediatric palliative care, technology only adds value if it supports compassion – not replaces it.
Christina Ramsenthaler presented the Children’s Palliative care Outcome Scale (C-POS), a tool that helps make what truly matters to children visible, reinforcing the human dimension of care. It’s a valuable instrument in a time of rapid technological development.
Knowledge sharing as a driver of change
Whether it’s ‘Off-label medication’ or’Innovation in education’ – better knowledge exchange is key. In a session on ‘Off-label medication’, Constance Remi and Carla Meyer-Massetti highlighted the urgent need for collaboration, clear guidelines, and international co-ordination to ensure safe and responsible medication use. The EAPC is currently exploring the formation of a taskforce. If you have experience, concerns, or ideas on this subject, now is the time to contribute.
Education is also changing. Virtual reality, e-learning and experiential learning methods help students and care professionals prepare to support families during the final stages of life. “End of life care is a universal responsibility,” said Sandra Rubbio Bernabe – a powerful call to embed palliative care structurally into curricula.
Relational care in practice: transition and communication
The transition from child to adult care calls for co-ordination, not handover. Dr Juho Lehto showed that young people with life-shortening conditions often experience long-term social and functional losses. He advocated for continuous, needs-based care that goes beyond the legal ‘under-18/over-18’ framework. His message resonated strongly during the evening session on transition, which notably attracted many professionals from adult palliative care.
Sessions on communication once again emphasised the importance of real, human connection. Shared decision-making, advance care planning, and working closely with children and parents are at the heart of quality care. Kristyna Polakova demonstrated how paediatric palliative care teams lead to better decision-making, stronger trust, and more support for healthcare providers. Tools like ComGuide and the VR Talks Project make difficult conversations more accessible. As Emily Harrop put it: “One hour of talk can save us lots of hassles.”
Global inequality: an uncomfortable truth
In a moving session on refugees and migrants, Mhoira Leng (UK) showed how dramatically unequal access to palliative care is worldwide. Globally, more than 21 million children need palliative care, yet 95% have little or no access to it (source: ICPCN).
Paediatric palliative care is most developed in the northwest of the world, where relatively fewer children need it. A clear ‘northwest vs southeast’ reality exists. While 90% of the European population has access to high-quality care, this drops to just 30% in countries like India. And although opioids are essential for pain management, they are unavailable in regions where most suffering children live – often due to conflict, poverty, or humanitarian crises.
Leng also highlighted the global research gap: 93.5% of palliative care research is produced in countries that represent only 15% of the global population. The remaining 85% of the world shares just 6.5% of research output. Education is similarly skewed, with most learning materials developed from Western perspectives and contexts.
Her central challenge: How do we bring knowledge from the northwest to the southeast in a way that empowers people and communities in their own context?
She emphasized education and community-based care as the cornerstones of sustainable change. Not just doctors and nurses, but also families and local networks need to be supported. “Implementation is key. Leadership, ambassadorship and political advocacy are vital.”
She closed with a striking quote:
“Modern hospitals are like fortresses. The poor can’t get in. The rich can’t get out.”
As a knowledge centre, we feel a deep responsibility here. We actively translate our tools and insights into accessible materials for global use, offer consultations to low-income countries, and contribute to initiatives such as the ICPCN e-learning, designed to meet local needs.
What will you take forward?
The themes at the heart of Helsinki – justice, technology, transition, communication – connect directly to daily paediatric palliative care practice. The sessions received outstanding feedback and confirm that we, as a network, are part of a wider global movement.
Do you have ideas or want to contribute to next steps? Join a working group, share your experience, or lend your expertise to ongoing projects. Reach out via: childreneapc@gmail.com or visit the website of the EAPC Reference Group Children & Young People.
The future of paediatric palliative care is something we build together, locally and across Europe.