The last two days of life of nursing home patients - a nationwide study on causes of death and burdensome symptoms in the Netherlands

Objectives: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients. Methods: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for the Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients. Results: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively. Conclusion: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.