Trainee experience and understanding in paediatric palliative care

Abstract

Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate trainee understanding of what these services can offer, and their experiences of palliative care in their day-to-day clinical practice. Methods An online survey was distributed to paediatric trainees across the UK. We analysed the responses using simple statistical methods as well as performing a qualitative analysis on free text responses. Results 161 trainees completed the survey, of which 94% reported working with children who suffer life-limiting or lifethreatening conditions. A significant proportion of trainees reported being unaware of some of the key roles of palliative care teams, such as supporting children who may later recover and be discharged from palliative care (Table 1). In addition, trainees report palliative care teams being poorly integrated within certain paediatric sub-specialty areas (Figure 1). Whilst 98% of trainees reported they would involve palliative care if a child was expected to die soon, fewer acknowledged the need to refer children for whom curative treatment may be feasible but could fail (42%), or before the birth of a child with a fetal diagnosis of a life-threatening or life-limiting condition (65%). 63% of trainees reported being involved in the care of a child where they felt that quality-of-life priorities or the possibility of death were not being openly acknowledged or discussed. Lack of knowledge about the services available, and concerns about parental perception of palliative care emerged as key barriers to making referrals. 93% of trainees said they would find it helpful to have more training in paediatric palliative care, either from local visits or more specific training. Conclusion UK paediatric trainees report being unaware of the full remit of palliative care teams, and many describe experiences where these services are difficult to access in their clinical practice. This survey provides an insight into the perceived barriers to better integration of paediatric palliative care, and highlights an area in which both clinicians and their patients may benefit from more dedicated resources and training. (Figure Presented).