Written by Alex Daniels – ICPCN Education Officer
On a crystal-clear morning in September, 43 largely jet lagged individuals converged on the Inspiration4Advanced Research Centre at St. Jude Children’s Research Hospital in Memphis, Tennessee. The group of professionals, primarily doctors and nurses, represented 26 countries and 6 WHO regions. The team at St. Jude Global Palliative Care Transversal Program had worked tirelessly to prepare an enticing programme and the moment for lift-off had finally arrived. The focus of the 6 -day programme was for participants to acquire EPEC- Paediatric ‘Train the Trainer’ skills; to join a Paediatric Palliative Oncology Virtual Symposium; and to learn Paediatric Massage Therapy skills. This was my first visit to Memphis and, following a warm welcome and vibrant round of introductions, coordinated by the inimitable Dr Justin Baker, it became clear to me we were being set up for a memorable experience.
The EPEC- Paediatric component was for participants to learn how to teach Paediatric Palliative Care (PPC) in their location/region. Prior to this event, participants had acquired PPC knowledge through various, forms including their own clinical practice, engagement with EPEC- P material and during the training we were consistently reminded to listen with the view to teach. Over three days, esteemed faculty covered a range of PPC topics geared towards expanding our knowledge and skill set. Dr Ximena Garcia suggested that if we learn to navigate uncertainty, we could help families navigate uncertainty. Dr Mike Mc Neil shared details of an innovative Comfort Promise Package, currently underway at five global sites, aimed at improving procedural pain management in children. We ploughed into an interesting exercise that required team collaboration challenging us to connect with creativity to express our mission, vision and value in relation to caring for our patients.
Dr Baker reminded us that our ears, our hearts and the team are our three most valuable tools to address the total suffering of our patients. ICPCN’s Chief Executive, Prof. Julia Downing, tackled a topic many professionals find particularly challenging and emphasised the critical role communication plays in caring for the imminently dying child. In an excellent session on self-care, Dr Alejandro Nespral left us with a clear message: ‘it can happen to you’. Dr Daniel Bastardo and the team from Together. St Jude – a multilingual online resource for families – facilitated an interactive session reflecting on global needs and regional priorities. We heard from Lisa Clark about the role bereaved parents play in the St Jude Bereavement Program and the breadth of bereaved parent involvement is impressive. Bereaved parent involvement includes: focus groups, mailing programme, virtual advisory platform, parent to parent stay in touch programme, as parent advisors, facilitating day of remembrance, podcast series and parent mentor programme. We had the huge privilege of engaging with bereaved parents directly in their role as global academy educators and, in our intimate small group discussions, parents invited us to ask them anything (and we did). Andrea Cuviello led a brilliant session on communication, and we got to role-play with real life bereaved parents – a rare opportunity indeed with so many valuable lessons learnt in one afternoon!
On day 4 we joined > 1000 online participants to attend the Next Generation Peadiatric Palliative Oncology PPC Oncology symposium chaired by Dr Justin Baker. A range of experts covered a host of subjects, including new updated American Academy of Paediatrics (AAP) guidance on end-of-life care, PPC in Humanitarian settings, communication and collaboration in childhood cancer care, ethical issues/conundrums, integrative medicine and advanced pain management.
The last two days were a special treat as we got to meet the magnificent Tina Allen who joined us via zoom from Tokyo. It was inspiring to hear about the work Liddle Kidz Foundation are undertaking to train and develop paediatric massage internationally. Under Tina’s guidance, and with the help of her team on the ground, we got to practice innovative massage techniques and experience the benefits of paediatric massage therapy. It was interesting to observe how enthusiastically the group responded to massage with no shortage of volunteers willing to experience the pleasurable benefits of nurturing touch. Subsequently, it has been particularly heart-warming to hear from participants (through our vibrant Global Academy WhatsApp group) who have already begun to integrate these new skills in the care of children and families with positive effect.
Over the six days, learning continued out of the classroom as we got to know each other, and our diverse backgrounds made for rich, interesting discussions. I soon realised that despite our varied settings in terms of access to resources, cultural complexities etc, we were united in a common goal: to make a difference to the quality of life of the children and families in our care. We shared many meals together and a particularly memorable mealtime as a larger group included bereaved parents – this following an informative albeit unsettling visit to the Civil Rights Museum. In smaller groups we explored the city, and I especially enjoyed walking along the banks of the Mississippi River and listening to great music at the legendary BB King Blues Club on Beale Street.
The opportunity to network with likeminded individuals from diverse settings was undoubtedly the greatest strength of the gathering for me. Through our connection around a common goal of growing Palliative Care within a paediatric oncology context we were presented with opportunities to make a real contribution and collaborate not only within our respective regions but also globally. Enormous gratitude to the ENTIRE team at St Jude Global Palliative Care Program for an unforgettable experience and special thanks to Dr Ximenia Garcia, St Jude Project Coordinator for a job well done. The QoLA team will always be remembered and to quote Dr Justin Baker: “We are a WE!”