Barely a week after the close of this remarkable meeting, I am already missing the vibrant energies that pervaded those five unforgettable days in Manila. Almost 400 delegates (both local and international) attended the proceedings, that included preconference workshops and the main conference itself. The chosen theme of the conference “Milestones and Horizons” was both apt and timely – inviting stock take while inspiring future visions. If you missed this wonderful outing, I shall provide interested readers a vicarious tour from my lens as speaker and participant. Let us begin.
As chair of the Specialist Interest Group for Paediatric Palliative Care at the Asia Pacific Hospice and Palliative Care Network (APHN), I was privileged to be involved in planning and rendering this paediatric palliative care conference with many friends and colleagues from across the world. Yes, it truly was a global assembly of sorts, conferring regularly before showtime in different working committees. I firmly believe collective efforts from everyone involved had led to many wins and overall success of the event. This spirit of ‘collaboration and partnership’ kept coming back to me as I reflected on my own experience and lessons learnt in the past week. A few streams of consciousness to follow.
The International Children’s Palliative Care Network (ICPCN) held three previous editions of this Paediatric Palliative Care (PPC) conference, moving from India to Argentina and then South Africa. After a long hiatus, no thanks to the COVID pandemic, Professor Julia Downing, the Chief Executive Officer decided that it was time to return to Asia. That got me excited immediately. Holding a massive event like this, specifically within the Asia-Pacific region, is significant to us for several reasons: heralding precious opportunities for advocacy and advancement of PPC at both country and service levels across this region. Many meetings and negotiations followed. Eventually, a union between The Ruth Foundation (TRF) from the Philippines and ICPCN occurred. I particularly appreciate the courage and leadership of Dr Rumalie Corvera (President of TRF) in making it a reality, despite initial jitters. The APHN is certainly proud to see one of its first Cynthia Goh Palliative Care Fellowship awardees helming the wonderfully organised conference alongside our ICPCN partners.
A very special preconference workshop was customised and designed by the St Jude Global Alliance, after their successful first run in Morocco (6-8 November 2024). The ‘purpose’ outlined was aspirational yet targeted: “To strengthen the capacity of interprofessional leaders in Asia to advance PPC through education, advocacy and collaborative planning, aligned with the World Health Organisation (WHO) framework for palliative care development. Again, the APHN was honoured to be a collaborating partner in this venture, and for very good reasons too. The goals embedded within the purpose for this workshop are very much aligned with ours in the PPC special interest group (SIG) at the APHN. Fully sponsored by the Alliance, participants that included policy makers, healthcare professionals at the front line, and representatives of civil society and foundations met to exchange ideas and prioritise actions with one common objective – to accelerate PPC development at community, institutional and national levels. On the second day of the leadership workshop, with the guidance and support from Dr Justin Baker from Stanford Children’s, the SIG ran its first Education in Palliative and End-of-Life Care (EPEC – Pediatrics) Professional Development Workshop (PDW) in Asia. I am heartened that through a series of engaging sessions across three pillars (education, advocacy and collaboration), a very diverse group of PPC champions from the Asia-Pacific were able to co-create a PPC agenda for meaningful impact. Judging from the chats within the WhatsApp group initiated during the workshop, these grateful sentiments are not just mine alone.
Finally, yet another fruitful collaboration realised within the fulsome week. APHN and The Global Treehouse (TGT) held an in-conference workshop: “From Insight to Action: Strengthening Children’s Palliative Care Services through the Magnify Tool.” The SIG first worked with TGT earlier this year to introduce the package to colleagues in the region. In essence, this user-designed tool demystifies data collection and analysis, effectively enabling services to use routinely collected data to good end, like advocacy or quality improvement. Ms Erin Das, the Practice Lead at TGT helmed the experiential workshop, with me as co-facilitator and supported by a few of my colleagues in the region. Alumni from our virtual runs of previous workshops shared early experience using the tool within their settings. We also heard from Ms Camara van Breeman (Canuck House, Canada) how her team tapped other benefits beyond reporting process data, like supporting service research. Everyone that attended left with something to bring home. Clearly, this would not have been possible without the generous support from TGT.
Personally, other than meeting old friends and making new ones as highlights, I continue to process what I heard at the expert panel on the last day of the conference. Sitting on stage together with Professor Julia Downing as chairs, the powerful and compelling discourse deepened my understanding about advocacy in general and policy in particular. On the hot seats were the who’s who in the industry: Dr Mae Dolendo (Paediatric Oncologist at Southern Philippines Medical Centre, Philippines); Professor Gayatri Palat (MNJ Institute of Oncology, Hyderabad, India); Ms Carmen Auste (CEO, Cancer Warriors Foundation, Philippines); Dr Stephen Connor (Executive Director, Worldwide Hospice and Palliative Care Alliance); Dr Megan Doherty (Two Worlds Cancer Collaborative and WHO, Switzerland). It would be impossible to precis all that were said but I shall attempt to crystallise key takeaways to close.
- Think about partnerships – To become bigger, to do (BIG) things for ‘small persons’
- Watch the weather – Go where the sun shines, to save efforts and optimise gains
- Take someone else’s bus – Don’t hesitate to ride along with adult palliative care folks. We are simply too small.
- Don’t say, just do – even with policies in place, nothing happens without actual implementation
Much food for thought I am sure for anyone pushing the PPC agenda to improve the lives of children and young people with serious illness and their families. Together with fellow colleagues in the SIG, and most of all, the collaboration and partnership with like-minded global advocates, we will continue to better little lives!
Poh-Heng Chong
Co-chair, Paediatric Palliative Care Specialist Interest Group
Asia Pacific Hospice and Palliative Care Network