Palliative care for life-limited children and young adults: the role of medical care in the development of children’s and young adults’ hospice services.

Abstract

Paediatric Palliative Medicine [PPM] within children’s and young adults’ [CYA] hospices has developed in an ad hoc manner. To date, clear description and classification of PPM service provision within CYA hospices has been absent (Help the Hospices Commission 2013; TfSL 2013). National guidelines state that specialist children’s palliative care services will include a Consultant in PPM (NHS England 2013; NICE 2016c). However there is limited research into the benefits of this (Mitchell et al. 2017). The aims of this study were to: (1) Describe and classify existing approaches to PPM service provision in CYA hospices across the UK, (2) Explore how CYA hospices respond when a child with a life-limiting or life-threatening condition [LLLTC] has unstable symptoms, is deteriorating or is dying, and (3) Determine if and how varying approaches to PPM service provision in CYA hospices impact on abilities to respond when a child with a LLLTC has unstable symptoms, is deteriorating or is dying. A mixed methods survey was conducted by telephone interview with leaders of CYA hospices. The convergent mixed methods design included quantitative, qualitative and case scenario data collection. A comparative case study approach guided analysis of case scenario data and data integration. 31 interviews were conducted, relating to 28 CYA hospice services, representing 34 inpatient units and 25 community services. Thematic analysis identified two overarching themes: Increasing complexity of care needs and Diversity in PPM approaches. Quantitative analysis demonstrated participating hospices supporting children with significant complex medical needs. All participating inpatient units provided some medical cover but with a diverse range of approaches and limited specialist PPM involvement. Participating hospices employed 0-13 doctors each, providing 0-120 hours medical presence weekly plus on call. 159 doctors were identified as working in CYA hospices; 63.5% were GPs. Only 27.5% of doctors working in participating CYA hospices had specialist training in PPM. The majority of CYAs’ hospices (67.9%) did not have involvement from a PPM consultant. A geographic-specialist classification of approaches to PPM service provision by CYA hospices was developed. Case scenario analysis identified a diverse range of responses by CYA hospices when a child with a LLLTC has unstable symptoms, is deteriorating or is dying. The impact of specialist PPM indicates a unique function of regional specialist CYA hospices as distinct from regional non-specialist, local specialist and local non-specialist CYA hospices. Findings demonstrate the diversity in amount and specialism of medical service provision in CYA hospices. Alongside this the complexity in medical needs of CYAs with LLLTC is increasing. The geographical-specialist classification of PPM service provision within CYA hospices could be used as a foundation for future recommendations for a networked approach to PPM within CYA hospices in order to promote equity and maximum positive impact for children with LLLTC.