Measurement and documentation of quality indicators for the end-of-life care of hospital patients a nationwide retrospective record review study

Background: Quality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons. Methods: In a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons. Results: Common end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients. Conclusion: Except for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings.