Feasibility of assessing quality of care at the end of life in two cluster trials using an after-death approach with multiple assessments

BACKGROUND: In 2009 two randomised cluster trials took place to assess the introduction of the Italian Version of the Liverpool Care Pathway in hospitals and hospices. Before and after data were gathered. The primary aim of this study is to evaluate the feasibility of using a combination of assessment methods aimed at different proxy respondents to create a means of measuring quality of care at the end of life. We also aim to explore whether there are differences in response to this approach between the hospice and hospital inpatient settings. METHODS: A retrospective design was used. Eligible deaths were traced through death registries, and proxies were used to give information. Four procedures of assessment were used to measure different dimensions. Feasibility was assessed through compliance and adherence to the study instruments, and measured against standards derived from previous after-death studies. The proxy caregiver’s rating of the study tools was also measured, to gauge feasibility and effectiveness. All consecutive cancer deaths that occurred in the study period were eligible. In both trials, deaths were excluded if the patient was a relative of hospital/hospice staff. 145 patients were recruited from the Hospital setting, and 127 from Hospice. RESULTS: A high proportion of non-professional caregivers were interviewed – in both hospital (76.6%) and hospice (74.8%). There was no significant difference in the median number of days in each setting. 89.0% of hospital patients’ GPs and 85.0% of hospice patients’ GPs were interviewed. Care procedures were recorded in all hospice cases, and were missing in only 1 hospital case.52.7% of Hospital patients’ relatives and 64.12% Hospice relatives were assessed to have been caused a low level of distress through the study. CONCLUSIONS: The data shows high levels of compliance and adherence to the study instruments. This suggests that this approach to assessing quality of care is feasible, and this coupled with low levels of distress caused by the study instruments suggest effectiveness. There were no substantial differences between the hospice and hospital settings.