Registration in a quality register: a method to improve end-of-life care—a cross-sectional study

OBJECTIVES: Structured methods to assess and support improvement in the quality of end-of-life care are lacking and need to be developed. This need is particularly high outside the specialised palliative care. This study examines whether participation in a national quality register increased the quality of end-of-life care. DESIGN: This study is a cross-sectional longitudinal register study. SETTING: The Swedish Register of Palliative Care (SRPC) collects data about end-of-life care for deaths in all types of healthcare units all over Sweden. Data from all 503 healthcare units that had reported patients continuously to the register during a 3-year period were analysed. PRIMARY AND SECONDARY OUTCOME MEASURES: Data on provided care during the last weeks of life were compared year-by-year with logistic regression. PARTICIPANTS: The study included a total 30 283 patients. The gender distribution was 54% women and 46% men. A total of 60% of patients in the study had a cancer diagnosis. RESULTS: Provided end-of-life care improved in a number of ways. The prevalence of six examined symptoms decreased. The prescription of ‘as needed’ medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient's next of kin was more often offered a follow-up appointment after the patient's death. No changes were seen with respect to providing information to the patient or next of kin. CONCLUSIONS: Participation in a national quality register covariates with quality improvements in end-of-life care over time.