Paediatric Palliative Care Discussions at the 2023 South Africa Palliative Care Conference
The 2023 Palliative Care Conference in Cape Town, South Africa was held from Thursday 27th – Saturday 29th April 2023. Sessions were held and presentations were made which led to discussions, exchange of ideas and shared experiences. Sometimes when palliative care is discussed in different forums the voice of the child can get lost or unintentionally left out but there were several sessions every day that focused on children’s palliative care at the conference.
The Paediatric Palliative Care (PPC) sessions started with sharing of key findings from a study that sought to understand the experiences of adolescents living with cancer with a focus on northern cape public health setting. Adolescents are minors until they turn 18 years old in many parts of the world and they find themselves in PPC but their needs are unique compared to younger children. They are beginning to come to their own, and shaping their world view and they understand and process information differently compared to younger children. A lot of thought and understanding needs to be taken into consideration when we are addressing their needs.
This was followed by a session discussing how children and caregivers process information and express their emotions in regard to the Intensive Care Unit (ICU). How do we discuss the goals? Some children and care givers find it hard to consent to the ICU. How do we best approach such a situation? That leaves us with food for thought. It is tough for medical practitioners to convince someone who is yet to come to terms with the progression of diagnosed medical conditions. How we communicate is critical and sometimes there is an emphasis on curative and treatment approaches we forget that communication is also key when giving holistic care and guidance. A balance is also required when balancing curative and non-curative treatment options at diagnosis in low and middle-income countries.
ICPCN Chief Executive Prof. Julia Downing Chaired a session on Sustainable models of PPC for South Africa where Dr Justin Baker, ICPCN Board member and Alex Daniels, ICPCN Education Manager made key presentations. Dr Baker said that unfortunately, palliative care is synonymous with end-of-life care in the world. His presentation was on integrated PPC as a component of high quality comprehensive care. One of the main barriers to palliative care integration is the medical providers approach where institutions don’t ooze palliative care. He mentioned the importance of measuring the outcomes in PPC. What should you measure in PPC?
- Integrated palliative care services
- Health policies
- Use of essential medicines
- Education training and
- Empowerment of people and communities and research
Ms Daniels presented on stepping up care; improving quality of life at the intermediate level. She discussed the rationale for Intermediate Care where the Core goal is to ensure a successful discharge of essential palliative care services and modalities of care – post acute, restorative care, and end-of-life care. She mentioned that the CPC providers of the future need to have the following traits and skills:
- Vision – co-designed with children and their families
- Technology – digital tools integral to all activities
- Place – physical settings act as centres of excellence
- Services – models of care to enhance choice, continuity and access
- Organisation – economies of scale savings reinvested to increase capabilities and fuel further growth
- Partnership – network of strategic partnerships
- People – use of in/outreach services means many more staff are ‘part of the team’ than are directly employed
- Culture – a culture of innovation, centred on children, families and staff as the engine of ideas
- Leadership – excellence and innovation not just applied to local care delivery, but advocacy, research, and education
Finally, she spoke about the Lantern Model and the seven components that get the greatest impact from the nurse.
- Person centered-practice framework
- Designed for and is dedicated to all nurses
- Highlights their unique, vital and skilled role
- Increased investment in recruitment, development and retention of nurses.
- Patient outcomes at the heart of the model
- Processes of care that is delivered
- Includes personal prerequisites of the nurse
There were other sessions such as caring for children with life-limiting conditions in the community through improving their access to palliative care. This was followed by parents’ perceptions of their children participating in paediatric palliative treatment and care. Two parents shared their experiences when it comes to preserving patient dignity. They started by reading a letter where their child who passed away journaled about his lived experience. The letter read in part, “…I don’t know why my parents allow for me to go through pain, the doctors stick needles and other things in my body and I go through so much pain but this is all to make me better…” The letter went on describing the child’s unfortunate experience sentence by sentence which just goes to show that children’s needs must be addressed and approached differently compared to adults and they go through the same challenges.
The sessions covered areas revealed a need for online learning platforms for paediatric palliative care and you can find resources on the ICPCN e-learning website HERE. There is also a need to incorporate the art of nursing into PPC education. This can be used as a teaching strategy.
Prof. Julia Downing made a presentation on outcome measures in palliative care. She said, “people remember how their loved ones die. We need data and to back them up with evidence. We need to measure the changes that we are able to enable with the care we provide. What can we do as people working in palliative care to make a difference?”
We need to ask ourselves what outcome measures provide, for how long and how often. What is it we are measuring and why? What makes a good outcome measure? No outcome scale is perfect. Prof. Downing said, “palliative care is about life and making sure everyone has the best quality of life and the tools we use are supposed to enhance the best quality of life.”
The 2023 Palliative Care Conference in Cape Town, South Africa was well organized and attended and key stakeholders and delegates were encouraged by the progress in integrating palliative care in healthcare systems, challenged to do more and insights to improve palliative care services.
NB: ICPCN Education Manager Alex Daniels was awarded the prize for the best poster paediatrics at the 2023 Palliative Care Conference in Cape Town, South Africa.
ICPCN Chief Executive Julia Downing was awarded best parallel oral presenter (paediatric) at the 2023 palliative care conference in Cape Town, South Africa.