Dying dementia patients: too much suffering, too little palliation

Abstract

Patient suffering is a pathological syndrome traditionally viewed as encompassing psychological distress, spiritual concerns, and various aspects of physical pain. There is insufficient clinical evidence for suffering in dying dementia patients, which may lead to inappropriate evaluation and insufficient palliative treatment. Our objective was to evaluate the suffering of terminal dementia patients over time, from admission to a geriatric ward to the last day of life. The study included consecutive end-stage dementia patients in a general geriatric department of a tertiary hospital. Patients were evaluated weekly by the Mini Suffering State Examination scale (MSSE) which measures many domains related to suffering. Seventy-one patients were studied. Mean survival of patients was 38.0 +/- 5.1 days. MSSE increased during hospital stay from 5.62 +/- 2.31 to 6.89 +/- 1.95 (p < 0.001). According to MSSE scale, 63.4 percent and 29.6 percent of patients died with a high and intermediate level of suffering, respectively. Only 7 percent of the patients died with a low level of suffering. In particular, patients were restless (p < 0. 001), had pressure sores (p = 0.01), and were considered medically unstable (p < 0.001). We concluded that, despite traditional medical and nursing care, a large proportion of dying dementia patients experience an increasing amount of suffering as they approach death. New palliative treatment approaches should be developed for these patients.