The EAPC Paediatric Task Force were delighted to host a paediatric palliative care workshop yesterday, Thursday 23 May, at the 16th EAPC Conference presently taking place in Berlin. The workshop spanned the whole of the first day from 08.00 – 18.30. Originally planned for around 150-200 people, over 900 people registered for the workshop, nearly one third of those attending the conference.
Meet the Expert Session
The day started with a ‘Meet the Expert’ session led by Lorna Fraser (UK) and Claire Quinn (Ireland) focused around Prevalence of Life Limiting Conditions in children. Some of the issues discussed were:
- The WHO definition of palliative care for children
- Identification of children with palliative care needs
- Accessing data on children who have died
- Challenges regarding under and over-estimating the data.
The Irish experience
Claire Quinn, CPC Nurse Practitioner and lecturer at the National University of Ireland, shared the Irish experience of developing a national policy on children’s palliative care. She emphasised the need for collaboration as the key component of this process – from the needs assessment right through to the development of the policy. She explained that the 2005 UK figures on prevalence supported the development of the CPC policy and that understanding the need and identifying gaps was crucial to the process. Claire also stressed the crucial role of education and the need to ensure nurses are trained to an appropriate level.
The steps described in the development process were:
- Undertaking a needs assessment
- Translation into policy
- Bedding in
- And then starting the cycle again.
Session on Information and Planning in CPC
The focus of the main session was Information and Planning in Children’s Palliative Care, chaired by Lizzie Chambers (UK) and Ana Lacerda (Portugal). Kim Beernaert from Belgium started the session looking at end-of-life decision making in perinatal palliative care, drawing on the results of a study undertaken in Belgium. There was much discussion afterward , particularly with regards to intention behind decision making and ethical issues.
This was followed by Ulrika Kreicbergs from Sweden discussing parents’ perception of the care of children with SMA both in Sweden and Denmark, drawing on different papers addressing this issue. Prof Monika Führer (Germany) looked at Advance Care Planning (ACP) in Paediatric Palliative Care specifically from the perspective of parents and health care professionals. She highlighted the challenges of conversations around ACP and the need to hold these despite knowing parents may not be ready for such discussions. The main themes highlighted included: communication, decision making and the need for time to digest information; and the need for documentation. Following on from their study they have developed a programme for ACP and are currently piloting it.
Hot topic – use of cannabinoids in CPC
After a well deserved coffee break and poster viewing, Sat Jassal (UK) started the discussion around evidence based prescribing in children’s palliative care, setting out important principles, and the importance of using and learning from the evidence. The role of cannabinoids in children’s palliative care is a hot topic and Renee McCulloch (UK) addressed this. She said that often health professionals are stuck in the middle between policy makers, parents and patients with regards to the use of cannabis so it is important to have an understanding of its use. However the evidence is poor, particularly in its use in children.
Boris Zernikow then spoke on how to assess and manage neuro-irritability in children with severe neurological impairment. He set the scene with four videos of children demonstrating such irritability and then utilised a case study to demonstrate how this can be managed. He continued the evidence based theme by sharing preliminary results from a number of studies.
Contemporary issues in children’s palliative care
After lunch six presentations made up a session on contemporary issues in children’s palliative care. Presentations were chosen from submitted abstracts and included a range of topics. Three presentations looked at the use of three specific medications – Aprepitant (Bhumik Patel UK), Clondine (Aine Ni Laoire Ireland) and Tapentadol (Benjamin Gronwald Germany). Alongside this, Emma Beecham explored the use of the term ‘Quality of Life’ in consultations with children with high risk brain tumours, Rebekah Merriman looked at assessing and addressing the needs of adolescents receiving palliative care in Uganda, and Maha Atout from Jordan explored the experiences of families in Jordan with a second or third child with palliative care needs.
Final session of the day
The final session of the day addressed various challenges in paediatric palliative care including the attitudes of Consultant Physicians in Palliative Medicine in Ireland towards providing palliative care for children (Coman Hennelly) and inequalities in children’s place of deaths in Denmark (Sanne Lauren Wolff). The final two presentations of the day enabled us to think about the challenges of decision-making in palliative care (Eduardo Verhagen, The Netherlands) and Accompanying the Child at the End of Life (Danai Papadatau, Greece). Both very thought provoking presentations asking how do we make decisions, who makes them and how does this vary in different places? What is our role in supporting the family through decision making? Danai shared her experiences in accompanying the child at the end of life, the impact on us as carers and lessons learnt. She described accompanying children as being about creating a safe haven, providing a secure base, holding and containing suffering and facilitating, building, and enhancing exploration.
Posters were on display throughout with workshop. With 69 posters presented in the category on children and adolescents, and others spread throughout the other poster categories. Posters will be available to view on the Conference website after the conference. Three posters were highlighted as the top abstracts within the category These were:
- A program of study to increase research access and participation by Children and Young People with LLC and LLI and their families: Barriers to research access: Voices, Experiences and Solutions.
- The BRAVES Project (Butler et al); Supporting families to clarify treatment preferences for emerging conditions in paediatric palliative care (Deinert et al); and
- Making the invisible more visible: A retrospective study identifying children and adolescents with complex chronic conditions and their access to specialist palliative care teams (Friedel et al).
Join the EAPC Paediatric Task Force and ICPCN
The EAPC Paediatric Task Force aims to drive developments for professionals and organisations working in children and young people’s palliative care across Europe, ensuring that palliative care for children and young people has strong representation within EAPC. It brings together all those working to develop and sustain children’s palliative care services, to share learning, to develop and share research and lay a strong evidence based for CPC in Europe. An open meeting of the task force was held over lunch and it was a great opportunity to get ideas and share the work of the task force. Collaboration and networking are key to the ongoing development of CPC and linking in with the task force, along with the International Children’s Palliative Care Network (ICPCN) are two ways of doing this.
To join the ICPCN please go to http://www.icpcn.org/join-us/