There was strong paediatric representation at the EAPC Congress in Helsinki this year, with Professor Lorna Fraser giving the first plenary presentation specifically on children. She made a strong case for more children’s palliative care research as numbers and complexity of children increase and the need to underpin practice with evidence. Lorna’s key challenge to the audience was to ‘stop describing problems and start evaluating interventions!’
Across the three days of the Congress there were parallel sessions on the themes of paediatric palliative care, transition and complex decision-making plus an open meeting of the Children and Young People’s Reference group, focussed on perinatal palliative care.
Paediatric Palliative Care Session
Dr Ana Lacerda, Paediatric Oncologist in Lisbon and Board Member of the EAPC spoke of the ADAPT survey they had carried out with members of the International Society of Paediatric Oncology Europe (SIOPE). Respondents from 29 countries shared their experiences of the timing and barriers for integrating PPC into the care of children with cancer. Results showed that although they perceived the ideal timing was early in the disease trajectory, the reality was that these conversations often took place later when no curative options remained. They also reported to be more comfortable talking about physical & emotional needs, but less so with spiritual issues and providing bereavement support.
Kristyna Polakova from Lancaster University in the UK described her research on the role of the PPC team in decision-making, highlighting the important role they play in acting as a bridge between families and professionals, empowering families to express their preferences, thereby potentially avoiding conflict situations.
Maria Cordoba-Nunez from Buenos Aires described a scoping review that compared studies on mortality data to estimate the numbers of babies, children and young people requiring palliative care. Differing study designs meant that there was variation in the estimated numbers of children requiring palliative care and there was likely to be an underestimate in LMICs.
Professor Christina Ramsenthaler and Daney Hardardottir from the Cicely Saunders Institute in the UK shared their observational study to validate the psychometric properties of the C-POS tool. Results showed that the tool was a reliable and valid instrument that could assess and monitor complex palliative care support needs.
Marc-David Munk from the Tufts Medical Center in Boston presented on a study that examined vocational changes in parents whose children died from SMA type 1. Almost a third of their survey respondents reported they had moved to a service-oriented vocation and hoped to make meaning in their grief by giving back to society.
The final presentation in this session was from Kerstin Hein from Munich who shared a Modular Advance Care Planning Programme (MAPPS) which has three ‘opt out’ modules relating to emergency scenarios, disease specific scenarios and end of life care, which gave parents more choice over when and how to have these conversations
EAPC Children & Young People’s Reference Group: Perinatal Palliative Care
Chaired by Jitka Kosikova, co-chair of the EAPC CYP Reference Group and Professor Lorna Fraser, there was an early morning open meeting of the EAPC Children and Young People’s Reference Group. It was focussed on perinatal palliative care, with presentations from Dr Emily Harrop (UK) who presented on a regional Perinatal Pathway and the role of a Specialist Midwife to help build collaborative working and Ziana Stanickova (Czech Republic) who presented on a stairway model that they have developed which provides education at pre-grad and post-grad level.
Transition
Later on the Friday there was a session on transition from children’s to adult care. Dr Finella Craig from the UK gave a pre-recorded presentation with the key message that we should celebrate with young people when they reach the milestone of becoming an adult. By embarking early on the transition journey and appreciating what is on offer in adult services she posited that we can anticipate their needs and work with adult services to meet them. Dr Stuart Jarvis from the University of York in the UK presented his research on the association between the numbers of young people with life-limiting conditions making the transition to adult services and their use of emergency hospital care. Kim Beernaert from Belgium shared research about three key types of continuity of care needed for a positive transition: relational (who to contact, where to go), informational (transparent medical files, debrief between children’s & adults) and management (discus and co-develop care goals, ensure access to healthcare services). One of her key messages was that young adults need special attention and are not simply ‘adults with less wrinkles!’.
Complex Decision-making in Children’s Palliative Care
This session focussed on the challenges of decision-making that are distinct for paediatric palliative care. Dr Peta Coulson-Smith from the UK talked about the growing need to make challenging and complex decisions that take into account a whole range of factors in the clinical setting which can have a huge impact on the team. In her region they had set up a special group to discuss ethics and complex cases which provided a safe space to have these conversations.
Jitka Kosikova from the Czech Republic talked about their model for enabling children to live and die at home and the careful preparation that is needed to support the move from hospital. She described the ongoing support and mentoring that is needed from the paediatric team to enable this, but also the huge value of giving families this choice. Her closing message was ‘Put your people first, the rest will follow’.
Caroline Dorsett from Nottingham in the UK presented a case study and shared facilitators to collaborative decision-making with parents in four domains (service provision, parent/family factors, child factors and the X factor – the unknown). She highlighted the importance of following the child and thinking about families’ perceptions of suffering – for example is the child being pain free enough? They have set up monthly ACP meetings with the palliative care team, critical care and community neuro-disability team which has helped facilitate decision-making and demonstrated to parents that their child is loved and cared about.
Dr Chiara Locatelli from Bologna in Italy shared a case study of a baby and the difficult discussions they’d had with the parents about potential scenarios, including his death. It was hard for the parents, but they appreciated that their baby was able to meet their sibling and see a priest before they died.
The final session was from Dr Ana Lacerda from Portugal who talked about ‘Empathetic Endings’. One of her key points was about the ideal of having a balance of power between professionals and parents, but how there is often an imbalance if professionals lack skills and parents have low healthcare literacy. She promoted the use of a keyworker nurse to address this imbalance and empower families. She also recommended that PPC is integrated for all children with cancer across the child’s journey, however that is achieved – with a dedicated PPC team or with support from adult palliative colleagues – the key was to find a way to work with the resources that you have.
Further information about the EAPC Children & Young People’s Reference Group can be found here: https://eapcnet.eu/eapc-groups/reference/children-young-people/
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