A journey of connection: Creating the Paediatric Palliative Care End of Life Communication Course
An article written by Annette Vickery, Paediatric Project Manager, Palliative Care Australia
Effective communication is the cornerstone of compassionate care in paediatric palliative care. Our journey in creating the Paediatric Palliative Care End of Life Communication Course was not purely a task, but a result of thorough research, reflection, and collaboration.
Realising the projected need for paediatric palliative care by 2025, estimated at 40,644 children and young people aged 0 to 21 years, spurred us into action. As one clinician told us, ‘The problem is fear... there’s no formal training for doctors on how to break bad news or how to have these conversations.’ This reflection underscored the urgency to bridge the gap between clinical expertise and effective communication to make sensitive conversations easier to navigate.
Enhanced communication not only benefits children, young people, and families but also brings a profound sense of fulfillment to healthcare professionals. By skilfully navigating sensitive conversations, clinicians provide essential support during challenging times.
Our initiative emerged from the findings of the Paediatric Palliative Care National Action Plan (NAP), highlighting the significance of authentic and effective engagement. Parents, carers, and young people emphasised the need for empathetic dialogue from diagnosis to end-of-life care and bereavement support.
We dug into the heart of the matter—the voices of those directly impacted by paediatric palliative care. We developed trusting partnerships and listened to families and learned a lot from them. We used the evidence from research in this sector and combined the best of contemporary learning methods and expert knowledge.
The active involvement of consumers as storytellers, advisors, and partners, shaped the final product. Their invaluable perspectives, and firsthand, real-world accounts shaped the course and will touch those who take part. Their courage, wisdom, and humanity helped us understand what families really need and compelled us to go boldly forward and teach this.
The Paediatric Palliative Care End of Life Communication Course consists of eight modules, designed for self-paced and self-directed learning. The course encourages health professionals to not only reflect on their own practices but also to draw insights from consumers' experiences and wisdom from health care professionals experienced in the field. Participants have the flexibility to engage in the manner that suits them, without formal assessments. Upon completion, participants receive a Record of Participation for their professional development portfolios and will continue to have access to module content for further reflection and ongoing reference.
The course is free and, importantly, recognises the emotional load that comes with working in paediatric palliative care. It therefore includes a module of self-care.
A member of the working group reflects on the development of the course:
"From the outset, the process involved in writing, curating, shaping and then editing the content for these Communication Modules has been a deeply profound experience. All involved in this rather daunting task, given the topics’ weightiness and complexity, approached this undertaking with a warm generosity of spirit, an openness to share wisdom and experiences, a resoluteness in their commitment to being honest as well as vulnerable, and all held a common purpose and committed vision that the modules must be a comprehensive and robust learning resource. Alongside health professionals from across Australia, our constant companions within the writing group were family members with lived experience of paediatric palliative care services, so their reflections as service users of what ‘good’ and ‘bad’ communication looked, sounded, and felt like, were integral. It was their experiences that were deeply grounding and ensured ‘truthful’ content that is inarguably compelling. The resulting modules are an invaluable learning tool now and into the future."
It's crucial to note that crafting the course wasn't a swift endeavour; it spanned 20 months of careful research, collaboration, and introspection. By nurturing meaningful communication, we aim to create authentic and effective connections where health care teams feel capable, so children, young people, and families feel truly heard and engaged.
The Paediatric Palliative Care End of Life Communication Course received grant funding from the Australian Government Department of Health and Aged Care for this work.
Author
Annette Vickery
Paediatric Project Manager
Palliative Care Australia