The Maruzza Lefebvre D’Ovidio Onlus Foundation organized the 4th Global Gathering – Maruzza Congress on Paediatric Palliative Care in Rome from the 24th to the 27th of October 2018.
The 2018 Congress on Paediatric Palliative Care saw the participation of over 400 participants from 40 countries – professionally, the delegates were divided as follows: 36% doctors, 26% nurses, the remainder included researchers, students, volunteers, psychologists, sociologists, social workers etc. Of these, 83% were female and 17% male. Regarding abstract submission for the 2018 edition, 158 abstracts were submitted for peer-review; 150 abstracts were accepted for presentation; 49 abstracts were designated for oral presentations during the working sessions and 101 abstracts assigned for the poster presentation. Besides the usual abstract submission from the European Regions and the USA, abstracts also were accepted from a vast range of countries worldwide including: the Korean Republic, Thailand, India, Cameroon, South Africa, Israel, Kuwait, Brasil and Argentina.
Over the 2 and a half days of the 2108 congress 5 plenary sessions, each with 3 specialist lectures by international experts covering topics linked to the main theme of ‘Thinking outside of the box’, were programmed. The range of topics covered included: global care access, integrated treatments, bereavement care, palliative care provision in low resource countries, future technologies, new drugs, co-operation across disciplines, perinatal care, spiritual care, PPC training and education etc etc.
Each morning the day in plenary began with a 30-minute introductory ‘Gaining Insight’ session that proposed an ‘unusual’ and ‘thought provoking’ topic linked to PPC . The ‘Thinking outside the box’ theme of this edition of the congress produced particularly stimulating presentations: David Steinhorn spoke about traditional/integrated treatments used in PPC; Federico Pellegatta, gave a particularly engaging interactive talk on new methods of communication through social networks and Matteo Asti proposed an interesting intervention regarding the representation of end-of -life care in films and the media.
In response to popular demand for knowledge-sharing opportunities, four pre-congress workshops on different themes of significant interest, and lead by eminent International paediatric palliative care experts, were organised to precede the congress. 148 participants attended the 4 workshops which dealt with the following subjects; Team Building and Leadership in Paediatric Palliative Care; Implementing Psychosocial Care, Including Sibling Engagement Care and Bereavement ; Multimodal Treatment of Pain and Distressing Symptoms in Children with Intellectual and Physical Disabilities; Advanced Care Planning in Children – When, Who, How?.
The Opening Ceremony, held in the afternoon of October 24th, was presided by Silvia Lefebvre D’Ovidio of the Maruzza Foundation. The Congress was ‘officially’ opened by the Congress Chair, Franca Benini, assisted by Ann Goldman, the Congress’ Honorary President, and the Co-Chair Justin Baker. During the event, the 2018 Ventafridda Prize was awarded to Dr Joan Wolfe who is the Director of Pediatric Palliative Care at the Boston Children’s Hospital, USA. Among her many attainments; she was recently elected as President of the American Academy of Hospice and Palliative Medicine and nominated as one of the top 10 influential leaders in the palliative care field in North America when she was described as: “the voice for children with serious illness and their families. She is a great visionary in developing, implementing, teaching and mentoring.”
The opening ceremony concluded with the presentation of the ‘No pain for Children Association Award’ for young researchers under the age of 36, who submitted abstracts that were judged by a special as particularly innovative and interesting. The 1st prize went to Cho Hee Kim of the Seoul University Paediatric Hospital in the Republic of Korea. The 2nd prize was awarded to Elin Hjorth from Stockholm, Sweden. The 3rd prize went to Marije A. Brouwer from Groningen in the Netherlands and the 4th prize was awarded jointly to Valentina Giardini from Monza, Italy and Kim Beernaert from Gent in Belgium. Furthermore, for the 4th Maruzza Congress, with the aim of creating a communication tool for raised awareness of palliative care for children, the Award was extended to a new category for ‘the best short video’ (open to all registered delegates). The winning film made by Nino Kiknadze form the ‘Children’s Hospice Firefly World’ in T’bilis, Georgia, was projected for the delegates before the invitation to the icebreaker cocktail and buffet which completed the evenings’ procedures.
Each afternoon, following the main plenary session, 4 interactive ‘Networking Sessions’ were organized. The aim of these very popular focus groups, led by an expert working in the palliative care sector, was to foster interactions and exchanges between delegates from different international cultures and backgrounds by bringing together smaller groups of participants with common interests to explore more challenging topics linked to the themes of the plenary presentations.
During the 2018 congress there were numerous unexpected and fascinating contributions and inputs, largely attributable to an increased attentiveness to children’s palliative care provision. During the opening ceremony, in addition to the launch of the latest World Health Organization’s ‘Guide for Health Care Planners, Implementers and Managers – Integrating Palliative Care and Symptom Relief into Paediatrics”, the Congress was furthermore honoured by the extraordinary participation of Her Royal Highness Sheika Jawaher bint Mohammed Bin Sultan Al Qasimi, the International Ambassador for Childhood Cancer of the Union for International Cancer Control, Founder and Royal Patron of the Friends of Cancer Patients Organisation based in the United Arab Emirates and wife of the ruler of Sharjah in the UAE, who, during her intervention, undertook to promote access to paediatric palliative care in the areas where the above mentioned organizations operate.
Also advanced technology, in the form of futuristic innovation with a elevated social value, played its part in the 4th Congress: on the final day, the plenary programme culminated in a roundtable discussion regarding the future of this growing sector. The debate, moderated by Justin Baker and Ann Goldman, saw, for the first time in Italy, the presentation of the ANA AVATAR Initiative by two aerospace engineers, from ANA Holdings Inc., Kevin Kajitani & Akira Fukabori, whose participation was supported by the Japanese airlines.
The congress concluded with an impeccable summing up of the congress procedures by the Congress Chairs and Honorary President, and invitation to participate in the next, the 5th Maruzza Congress, in 2020.