Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population
There continues to be a concern about the quality of end of life (EOL) care that both children and adults receive, with upwards of 45% of pediatric patients reporting distressing symptoms such as pain and fatigue at the EOL. To this effect, quality of EOL care warrants ongoing measurement in order to influence best practice guidelines which are currently lacking. This is compounded by the fact that current literature on this topic focuses on adult measures, which may not always be relevant to pediatrics. The authors of this paper explore some of the notable differences in EOL measures between children and adults, propose modifications to existing measures and suggest the formation of a task force to address this gap.
Some notable differences relevant to pediatrics include longer disease trajectories, the higher preference of a death in hospital, desire for high intensity therapy, the difficulty of symptom assessment in young children, variable access to pediatric specific palliative care, and the need to measure bereavement in parents/care givers and siblings.
This was a commentary and a paper focused specifically around American measures of quality (some of which are tied to funding. Not necessarily relevant to Canada).