Estimating the costs of palliative and end-of-life care for children with life-limiting conditions in Wales

• Children and young people with life-limiting and life-threatening conditions may benefit from paediatric palliative care; however, there is limited reporting on the resources and services associated with paediatric palliative care in the United Kingdom and internationally.
• The rate of children and young people in Wales with life-limiting and life-threatening conditions increased by nearly one quarter between 2009 to 20191.
• To effectively plan for future paediatric palliative care needs, we need to understand the services and resources involved, as well as their costs mapped against the increasing numbers of children and young people who may need palliative and end-of-life care.
• This report summarises the key findings from a 10-month project exploring paediatric palliative and end-of-life care services in Wales. We examined the resources, service use and associated costs of palliative and end-of-life care for children (aged <18 years) over the last two months of life, with reference to the four internationally recognised life-limiting categories or archetypes.
• We systematically reviewed the international literature reporting on health and/or social care costs for children and young people with a life-limiting condition over their last year of life, the most reported period of time2.
• We then set out to estimate the palliative and end-of-life care costs for children in the last two months of life. This time was selected as being more manageable to identify associated services and resources.
• Discussions were held with key stakeholders from relevant organisations and professional backgrounds with the aims of:
1. Defining the range of expected health and care services and resources utilised by a child during the last two months of life.
2. Examining how paediatric palliative and end-of-life care resource use may differ across different archetypes.
3. Developing a range of hypothetical costing case scenarios to illustrate how resource use may differ across different archetypes and settings.
• Costs of services and resources utilised within paediatric palliative and end-of-life care were identified and summarised from available costing data and financial proxies.
• We produced a costing calculator which can be used to model the costs of current and future care for children with life-limiting conditions in the last two months of life, across home, hospice, and hospital settings.
• We estimated the cumulative 10-year costs of palliative and end-of-life care for the growing population of children with life-limiting conditions in Wales in their last two months of life.