Symptom pathways from referral to death: measuring palliative care outcomes

This article reports on the first stage of a process to develop a clinical performance indicator for a community-based palliative care service that may inform the development of an agreed set of indicators for the whole sector. The study explores whether symptom data that are routinely collected to plan and monitor the care being provided by a community-based palliative care service also have the potential to be used to audit care against standards, compare services, and inform funders or purchasers. The article looks at the symptom distress scores of patients over the whole episode of their care from referral to death, by constructing pathways for each symptom (pain, insomnia, appetite, nausea, bowel, breathing problems, fatigue and pain). How these data may provide a multi-purpose measure of clinical outcomes is then discussed. It is concluded that, following further research to establish the symptom assessment scale's reliability and validity in different settings, it should be considered for universal adoption by palliative care services.