Planning paediatric palliative care for the unknown

A blog post written by Dr. Alison Bowers

Equitable health care, universal healthcare, evidence-based practice, and best practice are all terms we frequently hear in relation the provision of healthcare, as are closing the gap, unmet need, and postcode lottery.

Healthcare providers strive to provide efficient and equitable health services to a population who have a range of diseases and conditions with various and often unpredictable illness trajectories. A population with different ages, demographics, socioeconomic, cultural, and religious backgrounds and  different health literacy skills. Added to this, a fragmented private and public health system, differing health priorities of government and service providers, along with other determinants of health, leads to the creation of an extremely complex system of nonlinear relationships.

As would be expected, planning for healthcare is complex, even for a population whose characteristics are known.

So how is healthcare planned for a population that is unknown? How can universal healthcare that is efficient and equitable, be delivered to an unknown population?

This has been the case for paediatric palliative care in Australia and many other countries, for far too long.

Historically, the child population who may need palliative care in Australia has been estimated using outdated extrapolated data derived from the United Kingdom (UK). In 2016, administrative health data for Queensland children and young people aged 0 to 21 years and living with a condition eligible for palliative care, was used to estimate a prevalence of 43.2 per 10,000. Six years on, this prevalence proportion is now outdated, and we still do not know the total Australian population of children and young people who need palliative care.

While work is underway as part of the Paediatric Palliative Care National Action Plan Project to estimate paediatric palliative care need for 2018 and 2019, limitations still remain. The main limitation being that data used to estimate paediatric palliative care need is not collected for that primary purpose, but rather for activity based funding and clinical care. Moreover, the data is fragmented and access requires multiple approvals, which are costly and time consuming. There is an urgent need to address the data limitations occurring in paediatric palliative care by establishing a real-time data set that will facilitate equitable, universal healthcare, that closes the gap and addresses unmet need regardless of location of residence. So, who is responsible for addressing this need?

Palliative care is everyone’s business – be the change, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples”.



Dr. Alison Bowers PhD, Research Fellow
Cancer and Palliative Care Outcomes Centre, School of Nursing
Centre for Healthcare Transformation, Faculty of Health, Queensland University of Technology