“We are running on the fumes of goodwill”
8th January 2026
Researchers at the Cicely Saunders Institute and Hull-York Medical School and Leeds NHS Trust have published the results of a study of healthcare professionals views about palliative care services for children. Although end-of-life care for children has improved in recent years, there are still major inequalities in how 24/7 care is funded and provided. As a result, many families do not get the support they need. To improve services, it is important to understand what currently works, what does not, and how healthcare professionals experience delivering round-the-clock care.
This study explored the views of healthcare professionals who provide 24/7 paediatric palliative care and what they would want from a new service. Researchers used focus groups with professionals caring for children aged 0–18 who need palliative care.
A total of 53 professionals took part, including doctors, nurses, managers, and allied health staff. Three main themes emerged. First, professionals were working in a fragmented system with poor coordination between services, making it difficult to provide consistent 24/7 care. Second, families often had limited choice about where and how care was delivered, mainly because community nursing and specialist support were unevenly available. Third, professionals paid a personal cost for making the system work, often going beyond their roles, feeling underprepared, and sacrificing their own wellbeing.
Overall, healthcare professionals worked hard to deliver care in families’ preferred settings, but their efforts were restricted by gaps in local services. Many relied on personal commitment and goodwill to cover system failures, which placed emotional and physical strain on them.
The study concludes that providing 24/7 end-of-life care in such an unequal system is not sustainable. It causes moral distress for professionals and hides deeper problems in how services are organised. To fix this, healthcare organisations need to work together to create fairer, better-coordinated services that do not rely on staff overextending themselves.
Barrett L, Fraser L, Ziegler L, Jarvis S, Picton S, Hackett J. “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. BMC Palliat Care. 2025 Dec 3;25(1):9. doi: 10.1186/s12904-025-01958-1. PMID: 41339868.