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.

Pain assessment in patients with possible vascular dementia.

PREVIOUS studies comparing Alzheimer's disease (AD) patients with the normal elderly suggest that AD patients experience less pain. In the present study, pain reporting in 20 patients with possible vascular dementia (VaD) was compared to 20 nondemented elderly who had comparable pain conditions. It was hypothesized that, due to de-afferentiation, the possible VaD patients would experience more pain than the cognitively intact elderly. Pain assessment was conducted using three visual analogue scales, (1) the Coloured Analogue Scale (CAS) for Pain Intensity, (2) the CAS for Pain Affect, and (3) the Faces Pain Scale (FPS); a verbal pain questionnaire, Number of Words Chosen--Affective (NWC-A) of the McGill Pain Questionnaire; and an observation scale, the Checklist of Nonverbal Pain Indicators (CNPI). Results showed a significant increase in the scores on the CAS for Pain Affect and the FPS in the demented patients compared to the control group. There was a tendency for an increase in scores on the CNPI in the VaD group. These results suggest that patients with possible VaD suffer more pain than healthy elderly without cognitive impairment.

[Retrospective assessment of the Dutch version of the Discomfort Scale--Dementia of Alzheimer Type (DS-DAT): is estimation sufficiently valid and reliable?]. / Retrospectieve afname van de Nederlandse versie van de Discomfort Scale--Dementia of Alzheimer type (DS-DAT): is inschatten achteraf voldoende valide en betrouwbaar?

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) measures discomfort in severely demented patients with scores on nine items with behavioral descriptors. Direct observation of behaviour is the preferred method in severely demented patients, but is not feasible for some types of research. Alternatively, a patient's score may be assessed 'retrospectively', scoring an overall picture of the patient. To assess validity and reliability of such retrospective assessments, five observers--three nursing home physicians and two paramedicals--gave a DS-DAT score for 77 nursing home patients by direct observation, and, two weeks later, retrospectively. The mean score of the five observers was not different. The Intra-class Correlation Coefficient for intra-observer reliability was 0.50 for the five observers, and 0.55 for the three nursing home physicians. Our study demonstrated the possibility of a reasonably valid, but moderately reliable retrospective assessment of the Dutch version of the DS-DAT. Appropriate training of nursing home physicians who know their patients well may be required for this.