This year’s, Maruzza Congress was held from the 16th-18th October. There were four pre – Congress workshops on a variety of interesting topics: Perinatal PPC; Communicating bad news; the Management of pain; and Troublesome Symptoms and Difficult Choices – Bioethical Strategy. I attended the workshop on troublesome symptoms and difficult choices which was facilitated by Joana Mendes, Marie Friedel and Daniel Garros. It provided 30 healthcare professionals from 14 countries an opportunity to explore key issues around shared decision making, ethical frameworks, ways to strengthen communication and address moral distress in a global context. It was a day well spent – learning from one other as we contemplated challenging situations whilst being guided by expert faculty, and the range of resources supplied are very helpful.
Later that evening there was a sense of great excitement and anticipation as 414 delegates gathered in the basement of Auditorium Antonianum for the opening ceremony of the 6th Maruzza International Congress on Paediatric Palliative Care (PPC). This year, the Maruzza Foundation celebrates 25 years of commitment to PPC, and this important milestone served as inspiration for the Congress’s theme: ‘Roots and Horizons: learning from yesterday, living today, shaping the future’. In her reflection on the status of PPC, distinguished keynote speaker Ana Lacerda from Portugal, offered ‘TIPS’ on how to best deliver palliative care emphasising the importance of timely referral, inter-disciplinary teamwork and personalised care in appropriate settings.
This year saw the introduction of a Young Professional Committee, comprising of Sophie Bertaud, Victoria Salvo and Elizabeth Seashore, and they brought new fresh perspectives to this year’s opening plenary and inspired hope for the future of PPC. Maruzza President, Silvia Lefebvre D’Ovidio, presented Danai Papadatou from Greece, with the Vittorio Ventafridda Award in recognition of her exceptional dedication and commitment to the development of PPC. The Vicek Family Foundation awarded three young researchers: Luca Nicot from Germany, Rachel McCauley from Ireland and Mei Chan Grace from Singapore with prizes for the best abstracts. The opening ceremony concluded on a light-hearted note with ‘Paradoxa’ inviting the audience to join him on a journey with his magical bubbles.
Alex Daniels with ICPCN’s CEO, Prof Julia Downing and Board Members:
Dr Regina Okhuysen – Cawley and Dr Justin Baker
Over the next two days, 49 oral presentations were delivered, and 150 posters were displayed providing ample opportunity for learning, sharing and professional growth. A Congress highlight was the Young Professional’s plenary session that addressed ‘Diversity, Equity and Inclusion in PPC’. Johnathan Koffman in his talk on ‘Racism, Ethics and Palliative Care’ challenged us to consider our privilege, were we providing a privileged service to a socially elite group, and do we look like the patients we are caring for? Joe El Khoury tackled culture and religion head on, offering practical strategies for cultural sensitivity that included cultural competence training, building trust through open communication and respecting the patient’s religious rituals. Julia Downing’s emphatic presentation addressed the issue of ‘Equity and the delivery of PPC in LMIC’s’, motivating us to work collaboratively to achieve equity for the wide range of children and young people needing PPC across challenging and changing environments.
In the session entitled “Self-Compassion, Growth and Development in healthcare professionals in PPC’, Jared Rubenstein unpacked diversity, inclusion and belonging; with diversity referring to our demographic differences and inclusion achieved when all team members felt seen and heard. Belonging is considered crucial to a positive workspace and is realised when team members bring their whole selves to work, are valued for who they are, and their perspectives sought out. In the two focus sessions that followed, leadership and self-care were addressed respectively. In the self-care sessions delegates were requested to share how they care for themselves and to identify barriers to self-care – this exercise was conducted with a partner. It was interesting to hear that, despite culture and context differences between health care professionals, common human experiences and aspirations for health and wholeness were more similar and different.
The final day of the Congress commenced with Maria Aviles Martinez sharing her team’s experience of using telephone interviews for dealing with emergencies in the patients’ home settings in Spain. In an excellent plenary session on using assessment tools in PPC, Prasana Ananth, Richard Harding and Lorna Fraser shared their insights on work conducted in the USA, the UK and internationally. It was great to hear from Ximena Garcia about advances made in Latin America to improve paediatric pain management through the integration of the global comfort promise – the difference this approach is making to the quality of life of children, families and health care professionals is impressive.
At the closing ceremony, Ann Goldman, a stalwart in the field of PPC, reflected on some key threads throughout the Congress including respect, openness and friendliness, and privilege leaving her feeling optimistic for the future. She noted that the standard of presentations, both oral and poster, had increased.
The 6th Maruzza Congress offered an important space for learning and collaboration with like-minded colleagues from 55 countries and, whilst this is a notable achievement, it is hoped that the next Maruzza Congress will address equity by including countries / continents that represent the greatest need for PPC. However, it was encouraging to hear that over a third of the delegates at the Congress were under 40 years old, Franca Benini, Chair of the Maruzza International Congress, affirmed this sentiment in her closing remarks: ‘To guarantee the continuation of quality care for children with serious illness, we must invest in a new generation of professionals who will shape the future of this discipline’.
Thank you to the Maruzza Foundation for hosting a well-coordinated Congress and for flying the PPC flag high. Through connections, both during and outside of the Congress, so many opportunities for friendship, networking and collaboration were created over three days in your beautiful city.
