At the end of October, the Maruzza Foundation hosted the Education in Palliative & End-of-Life Care (EPEC) Pediatrics – ‘Advanced workshop in Paediatric Palliative Care’. Over four consecutive days, key aspects of paediatric palliative care were facilitated by a team of experts. During the online workshop, 128 participants from 41 countries representing 6 continents connected across time zones, with 13 participants from the African continent. I am delighted to have had an opportunity to join as one of 5 South African delegates.
On the first day we were introduced to core concepts in PPC, multimodal analgesia, aspects of self-care, and respiratory management. Dr Joanne Wolfe shared a helpful framework for easing suffering which recognised visible and invisible threats that impact on the family’s integrity in relation to suffering and the contribution PC practitioners can make to restoring the family’s integrity through targeted and global interventions. We considered the many causes of suffering that include physical, emotional, spiritual, and psychosocial components, and the difference PPC interventions make to the quality of life for the child and their family was affirmed. Dr Stefan Friedrichsdorf reminded us of the terms of the ‘2010 Declaration of Montreal’ which advocates for access to pain management as a fundamental human right. A strong argument was presented for using multiple agents, interventions, rehabilitation, psychological and integrative therapies to control pain in children with fewer side effects than single analgesics. In the breakout session, the need for professionals to commit and attend to nurturing self-awareness as part of their self-care practice was heralded as essential to good clinical care and improved experiences for patients and families. In the last session of the day, we were encouraged to consider dyspnoea as a subjective sensation requiring a stepwise approach to manage that includes parental involvement, reassurance, and non-abandonment.
On day 2, Dr Justin Baker led an excellent reflective session encouraging us to ‘listen bravely’ and, in the words of Mark Nepo, “to lean in, softly, with a willingness to be changed by what we hear”. Presentations for this day included discussions on goals of care, as a fundamental PPC intervention, as well as a range of considerations for managing symptoms and procedural pain. Dr Joanne Wolfe eloquently guided us through the fundamentals of a goal of care discussion, sharing 6 cardinal questions and identifying primary goals and language that serve to disrupt and facilitate goals of care discussions. In terms of opioid administration, there were several takeaway messages: Methadone was an excellent opioid for treating advanced neuropathic and nociceptive pain. However, methadone should always be administered by an experienced practitioner and mentorship and partnership with a Pain team was strongly advised. It is important to adopt a stepwise approach when considering opioid selection to meet the individual needs of the patient. In the last session of the day, Dr Melanie Brown reminded us that failing to protect their child from pain contributed to a parents’ greatest distress. She shared an extensive range of integrative modalities and pharmacological agents to address procedural pain in children.
At reflection time the next day, we engaged in a simple breathing exercise while Stacy Remke read ‘Desiderata’, an extraordinary, beautiful piece by Max Ehrmann. In the timely session on Spirituality, Grief and Bereavement, we learnt that bereavement science recognised as normal that people oscillated between coping/restoration and loss/avoidance and the concept of ‘continuing bonds’ was affirmed as new relationships with loved ones begin to unfold. In the next plenary session, and through an effective case study model of learning, we were encouraged to evaluate our attitude, our knowledge and develop skills in relation to neuropathic pain and adjuvant analgesia. Later in the breakout session we explored the upsides, downsides, barriers and facilitators to effective teamwork and collaboration through an interactive jam board session.
In the reflection on the final day, we were invited to experience our unique safe and comfortable place through a short hypnosis session facilitated by Dr Stefan Friedrichsdorf. We returned to our virtual meeting space feeling energised and ready for a comprehensive plenary session on ‘Preparation for Imminent Death’. Dr Justin Baker shared the concept of total suffering, introducing 5 key tools and 7 key practices to achieve high quality end of life care.
Practices that stood out for me were cultivating prognostic awareness, communicating with the child, sustaining HOPEwhatever goal of care we are in, the issue of regret, INTENSIVE comfort/symptom care, and interdisciplinary team involvement. We experienced a short but powerful video clip entitled ‘Refuge in Grief’, that highlighted the importance of honouring and acknowledging suffering. The final session focused on communication and planning and included the SPIKES model of communication, several trigger videos and an interactive session with participants engaged in a series of role plays in the breakout rooms.
Throughout the workshop we were presented with plenty of opportunities for learning, sharing, and connecting with interesting individuals, often from vastly different settings to ourselves. Nevertheless, despite these differences, we shared similar human experiences and most importantly a common goal: to offer families the best possible care. Music often serves as an effective universal connector and had been a central theme throughout the workshop as we got to experience an eclectic mix during the breaks, so it was fitting that the farewell celebration involved more music, dance, and funky dress up. My toolkit has received a generous boost and I feel energised, inspired, and grateful to all who made this experience possible.
Alex Daniels, ICPCN Education officer
A useful article on EPEC Pediatrics can be found here – Postier AC, Wolfe J, Hauser J, Remke SS, Baker JN, Kolste A, Dussel V, Bernada A, Widger K, Rapoport A, Drake R, Chong PH, Friedrichsdorf SJ (2021). Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination. Journal of Pain and Symptom Management. Advance online publication. https://doi.org/10.1016/j.jpainsymman.2021.11