Table 1 Main characteristics of the four published prospective cohort studies on institutional end-of-life care in dementia
Study | Sample | Data sources | Main outcome measures | Main study aims |
|---|---|---|---|---|
N = 123 (91 cases of death), census in 3 NH, main inclusion criteria: life expectancy of 6 month or less, dementia diagnosis, receiving or meeting criteria for hospice or palliative care | Chart review (BL, 3 M, PM); surrogate decision-makers (BL, 3 M, PM); physicians (BL); nurses (BL, incomplete information); direct assessment of residents (BL, 3 M) | Medical status (by charts); treatment decisions (by surrogates); quality of life (by caregivers and surrogates); frequency of contact with staff (by surrogates); spiritual and religious beliefs (by surrogates) | Description of health problems, examination of decisions of surrogate decision-makers regarding treatment | |
N = 323 (177 cases of death), main inclusion criteria: CPS 5 or 6, dementia diagnosis, GDS = 7 | Chart review, nurses and clinical examination (BL, 3 M, PM2, PM7); REL (BL, PM2, PM7) | EOLD-SM (by nurses); EOLD-CAD (by nurses); EOLD-SWC (by REL); QUALID (by nurses); DSI (by REL) | Description of disease trajectories, resident comfort, clinical decision-making, family satisfaction with care, complicated grief among REL | |
N = 372 (218 cases of death), main inclusion criteria: CPS 5 or 6, GDS = 7 | Physician (BL, 6 M, PM), REL (BL, 6 M, PM) | EOLD Scales, PAINAD, QUALID (by physicians and REL) | Description of comfort, symptom burden, pain and family satisfaction with care | |
N = 315 (NH), N = 181 (home care) (100 cases of death), main inclusion criteria: FAST ≥ =7, life expectancy of more than two weeks | Chart review (bi-weekly), nurses (bi-weekly), physicians (incomplete information) | Diagnosis, ongoing treatment, current prescriptions, appropriateness of prescription (by charts), DS-DAT (by nurses) | Description of treatment and prescription, discomfort, critical decisions |