Paediatric Palliative Care Shaped by Patients and Families
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By Sara Fleming, Nurse Practitioner, Senior Lecturer in Palliative Care, Flinders University.
When I pondered recently about what my real aim is in education - it gave me pause. Is it that I want the learner to feel more confident, and have more knowledge, and better preparation, and self-awareness? Well, yes.
But it goes further - to the people I have cared for over the years and their experiences, and what they have taught me. It’s the passion which says that I want to make a difference to how we all care for people who are living a limited life - the difference which brings forward their agency in how we provide that care.
One of the few positives in the COVID pandemic was the evolution of online phenomena like learning modules and interactive webinars. The urgency to reach patients eliminated the healthcare management’s final resistance to implementation of telehealth, ensuring we will never be so far from our families or each other again.
This shift in education program design brought ease of access to “consumers” to participate in co-design processes from across the country and led to an explosion of short videos and longer stories from them, which became accessible for embedding in modules.
In the paediatric palliative care sector, the voice of families has recently transitioned from post-design consultancy/opinion model into proper empowered co-design from the very inception of new work and review. The work in Paediatric Palliative Care Australia and New Zealand and Palliative Care Australia projects has embedded consumers in all levels and this is reflected in content on the website and in the Practical Guide.
In the refreshed End-of-Life Essentials module for Paediatrics this is evident in the content where poignant videos are linked, and the content from the website and Practical Guide are heavily platformed in the lived experience of consumers.
How does this consumer voice make a difference? I believe it not only tells the truth about the experiences of families and what they really want from us, but it prickles at our empathy receptors and challenges us to authentically engage and do better.
I think back to my days as a student nurse - I really don’t think my patient cared at all about the perfect “hospital corners” on their bed cover but they sure appreciated that I was mighty fine at getting the pillows exactly right to make them comfortable. I loved that knowledge that I had made them feel better - it’s stayed with me that it’s all about how I made my patient, and their family feel; did I ameliorate their day?
This settles across into all elements of palliative care practice - communicating with sensitivity, managing symptoms with meticulous skill, working alongside differences with positive regard and flexibility, seeking the best team for partnership in providing care. We know that our families tell us that they value this.
To ameliorate means to make something better or more tolerable - surely that’s an aim in clinical practice, and a driver in teaching and research. Let us listen deeply to what consumers are telling us about what that looks and feels like for them and do that!
Learn more in the updated End-of-Life Essentials Paediatric End-of-Life Care module.
Sara Fleming
Senior Lecturer in Palliative Care, Flinders University