Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents' experiences

Much of the work in children's hospitals is rightly focused on treatments aimed towards cure but this means that death is often seen as a failure and, as such, it may not be discussed or acknowledged as a possibility until very late in a child's stay in hospital. However, this reluctance can deny the child and their family the opportunity to be informed, prepare and make choices. A survey of the care received by parents whose child had died in a children's tertiary treatment centre led to a greater understanding of the parents' experiences and the ways in which care could be enhanced. Parents talked of the way in which the geography of the hospital could be disruptive and dislocating and yet they often had no place to be alone or in private. Communication was identified as a core issue with many parents being positive about the quality and timing of communication. However, other parents expressed a preference for more preparation about the possibility that their child might die. Some parents had positive experiences of follow-up visits after their child's death, whilst others remained frustrated and some felt this visit had made them re-live the experiences. The importance of kind, supportive and consistent care was clearly evidenced by the parents when they spoke about their feelings and emotions. The findings helped to develop and implement an End of Life Care Pathway and a pathway tool which aimed to enhance parents' experiences and to improve care. A further survey was triggered by the concern that the pathway was not being fully utilized and it became apparent that, despite the tool, staff were still reluctant to provide anticipatory guidance, even though many practical aspects of care scored well. The need for good communication that prepares parents for the eventuality that their child might or will die is one of the clearest lessons from the second survey. This is important as anticipatory guidance opens up parents - and children's - choices, and their opportunities to be involved and make decisions. More work needs to be undertaken in relation to continuing education of clinical staff, raising awareness of the resources available and empowering families by providing information.