Objective: Although efforts have been made to define optimal terminal care in palliative care units (PCU's), comprehensive longitudinal evaluations of care outcomes in PCU's are scarce. Often, the researchers cannot meet the methodological challenges. In this study, changes in functional status (assistance needed for walking and toilet use) and symptoms (pain, nausea, shortness of breath, depression and anxiety) were assessed in patients admitted to PCU's in The Netherlands.
Methods: 355 patients admitted to 10 PCU's in the Netherlands participated in the study. The outcomes were measured at PCU admission, and two weeks, one week, 48h, and 24h before death. The Resident Assessment Instrument Palliative Care was used for measuring functional status, and the Edmonton Symptom Assessment Scale was used for measuring symptoms. The data were collected by trained PCU staff members. The data collectors were instructed not to involve the patients in the measurement.
Results: Changes in functional status and symptoms were assessed in three patient groups: (1) one week survival, (2) two weeks survival, (3) three-four weeks survival. Functional status deteriorated from admission to one week before death in all groups. Symptoms did not worsen in the last three weeks before death in all patient groups. Decreases in pain, anxiety, and nausea were observed in Group 3. The mean outcome scores were not higher than mid-level.
Conclusions: The results suggest that the end-of-life care provided in the PCU's was good: The stability of symptom outcomes in light of deteriorating functional status reflect positively on the quality of care in the PCU's. Collecting data by proxies in the PCU's proved to be feasible and suitable for collecting longitudinal data, and analysing changes in outcome. However, absolute levels of outcomes cannot be compared with self-report data. Additional advantages and shortcomings of proxy measurements in palliative care settings will be discussed.