Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records.

BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective.

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.