# “We are running on the fumes of goodwill” Professionals’ experiences of delivering 24/7 end-of-life care to children and their families: a qualitative study

## TL;DR

Healthcare professionals face significant challenges in delivering 24/7 end-of-life care to children due to fragmented systems and lack of support.

## Contribution

This study provides new insights into professionals' experiences and the systemic issues affecting 24/7 pediatric palliative care delivery.

## Key findings

- Professionals often sacrifice their wellbeing to provide 24/7 care, sustaining an unsustainable system.
- Moral distress arises from inequality in service provision and limited family choice.
- Integrated Care Boards need to collaborate to create equitable and sustainable care models.

## Abstract

Despite recent improvements, there is still stark inequity in the funding and provision of 24/7 end-of-life care for children, resulting in many families not receiving the support they need. To inform, plan and implement service changes it is important to take account of what works in current contexts and existing models of care, and to learn how professionals ‘on the ground’ are currently experiencing 24/7 care delivery.

The study aimed to explore professionals’ perspectives of delivering 24/7 paediatric palliative care and their expectations and needs of a new service. This qualitative study used focus groups, and a thematic framework approach to analyse the data. Participants were healthcare professionals (HCPs) involved in the delivery of care to children (0–18 years) with palliative care needs and their families.

Fifty-three healthcare professionals, (25 doctors, 19 nurses, 6 managerial/administration and 3 allied professionals), took part in 11 focus groups. Three themes with sub-themes were developed: (1) Working within a fragmented landscape (Responding to the need for 24/7 end-of-life care, Coordination across teams without infrastructure, Building 24/7 continuity through integration); (2) Constraints on choice: default not preferred choice? (Limits to family choice, Critical yet inconsistent provision of community nursing, Inequality of access to specialist support); and (3) The personal cost of making it work (Gaps in confidence and experience, The price of goodwill). Professionals navigated a disjointed system to deliver 24/7 care to families. They strived to offer care in families’ preferred place; however, choice was constrained by the availability of local services. Professionals stretched themselves to provide around the clock care, often sacrificing their personal wellbeing and in doing so, inadvertently sustaining a broken system.

Stepping up to support families with 24/7 end-of-life care for their child, has resulted in an unsustainable physical and emotional toll on professionals. The impact of delivering care in an inequitable system is causing significant moral distress, and there is a growing realisation that their goodwill is masking current systemic shortcomings. Integrated Care Boards must work jointly to find economies of scale to establish equitable and sustainable models of delivery that meet national standards and to ensure all children have access to high quality 24/7 end-of-life care.

The online version contains supplementary material available at 10.1186/s12904-025-01958-1.

• Providing 24/7 access to professionals with palliative care knowledge is key to supporting children and their families receiving end-of-life care in their preferred place, however there is stark inequity in funding and provision, resulting in many children and their families not receiving the care they need.

• Regional service variations meant professionals were reactively finding ad hoc solutions for families; without supporting infrastructure in place, it takes time and resources to coordinate 24/7 end-of-life care across multiple teams.

• Professionals experienced moral distress when inequality in service provision constrained their ability to offer some families choice of place of end-of-life care.

• The study showed that sustaining 24/7 end-of-life care often relied on the goodwill of overstretched professionals leading to emotional and physical strain and concerns their efforts were masking systemic shortcomings.

• ICBs need to work jointly to develop equitable and sustainable models of 24/7 end-of-life care to meet statutory duties and to ensure all children have access to high-quality care at the end of their lives.

The online version contains supplementary material available at 10.1186/s12904-025-01958-1.