Table 3.
Experience of Dying and Palliative Care Reported by Staff of Residents (N=581) who Died With and Without Dementia in Residential Care / Assisted Living (RC/AL) Communities and Nursing Homes (NH)
| RC/AL | Nursing home | |||||
|---|---|---|---|---|---|---|
| Decedents with Dementia | Decedents without Dementia | Decedents with Dementia | Decedents without Dementia | p-valuea | ||
| N (%) | N (%) | N (%) | N (%) | Dementia | Facility type (among those with dementia) | |
| Course of illness during last months of life | ||||||
| Stable health | 22 (12.6) | 25 (27.2) | 20 (8.1) | 6 (9.0) | 0.212 | 0.136 |
| Steady decline | 93 (53.4) | 43 (46.7) | 177 (71.7) | 48 (71.6) | ref | ref |
| Series of ups and downs | 59 (33.9) | 24 (26.1) | 50 (20.2) | 13 (19.4) | 0.225 | <0.001 |
| Physical symptoms and symptom-directed care during last month of life | ||||||
| Pain | ||||||
| Not effectively treated | 17 (10.2) | 4 (4.5) | 13 (5.5) | 3 (4.6) | 0.078b | 0.186b |
| Treatment effective | 69 (41.3) | 44 (49.4) | 133 (55.9) | 44 (67.7) | ||
| None, never an issue | 81 (48.5) | 41 (46.1) | 92 (38.7) | 18 (27.7) | 0.206c | 0.249c |
| Shortness of breath | ||||||
| Not effectively treated | 8 (5.0) | 13 (15.7) | 13 (5.3) | 8 (12.3) | 0.014b | 0.570b |
| Treatment effective | 60 (37.3) | 34 (41.0) | 108 (44.4) | 29 (44.6) | ||
| None, never an issue | 93 (57.8) | 36 (43.4) | 122 (50.2) | 28 (43.1) | 0.014c | 0.218c |
| Hygiene care very effective | 153 (89.5) | 87 (96.7) | 224 (90.7) | 52 (77.6) | * | * |
| One or more skin ulcers | 47 (26.9) | 9 (9.9) | 55 (22.6) | 17 (25.4) | * | * |
| Management of behavioral Symptoms | ||||||
| Any restraints used | 115 (65.7) | 35 (38.0) | 226 (91.5) | 49 (73.1) | 0.004 | <0.001 |
| Any restraints other than partial bed rails used | 81 (46.3) | 16 (17.4) | 167 (67.6) | 32 (47.8) | 0.002 | 0.031 |
| Sedative used frequently | 33 (21.0) | 10 (11.0) | 68 (29.2) | 9 (14.1) | 0.010 | 0.592 |
| Sedative used at least sometimes | 47 (29.9) | 11 (12.1) | 87 (37.3) | 14 (21.9) | 0.002 | 0.792 |
| Psychosocial status during last month of life | ||||||
| Resident appeared to be at peace | 122 (70.1) | 73 (82.0) | 158 (64.2) | 42 (62.7) | 0.163 | 0.304 |
| Resident received compassionate touch daily | 168 (96.6) | 82 (90.1) | 233 (95.1) | 60 (89.6) | 0.035 | 0.399 |
| Resident’s dignity maintained | 156 (90.2) | 82 (90.1) | 219 (89.4) | 57 (85.1) | 0.676 | 0.847 |
| At least one staff had close attachment to resident | 144 (82.8) | 77 (85.6) | 176 (72.1) | 55 (83.3) | 0.220 | 0.528 |
| Life-sustaining interventions during the last month of life | ||||||
| Nutritional supplement | 98 (68.1) | 34 (58.6) | 184 (87.6) | 43 (87.8) | 0.170 | 0.003 |
| IV fluidsd | 6 (4.2) | 3 (5.2) | 24 (11.4) | 5 (10.2) | 0.499 | 0.014 |
| Feeding tubed | 2 (1.4) | 2 (3.4) | 16 (7.5) | 6 (12.0) | 0.067 | 0.062 |
| Hospitalized | 69 (39.7) | 45 (50.6) | 57 (23.6) | 23 (34.3) | 0.214 | 0.149 |
| Received antibiotics in facility | 55 (33.7) | 24 (28.6) | 114 (50.0) | 28 (45.2) | 0.150 | 0.003 |
| Received CPR in facility | 5 (2.9) | 3 (3.3) | 4 (1.6) | 3 (4.6) | 0.941 | 0.921 |
| 911 called on last day of life | 30 (18.0) | 31 (35.6) | 8 (3.3) | 9 (13.6) | 0.006 | 0.010 |
| Palliative interventions during the last month of life | ||||||
| Special attention to moving and positioning | 56 (32.0) | 26 (28.3) | 102 (41.6) | 29 (43.3) | 0.903 | 0.956 |
| Received hospice services | 109 (64.5) | 46 (51.7) | 120 (55.0) | 28 (45.2) | 0.123 | 0.183 |
| Circumstances of death | ||||||
| Location of death | ||||||
| Facility, private room | 109 (63.0) | 44 (47.8) | 43 (17.6) | 17 (26.2) | 0.198e | <0.001e |
| Facility, shared room | 37 (21.4) | 17 (18.5) | 184 (75.1) | 38 (58.5) | ||
| Hospital | 24 (13.9) | 29 (31.5) | 17 (6.9) | 9 (13.8) | 0.005f | 0.509f |
| Other | 3 (1.7) | 2 (2.2) | 1 (0.4) | 1 (1.5) | ||
| Companionship at death | ||||||
| Someone else present | 103 (60.9) | 53 (59.6) | 156 (66.4) | 42 (65.6) | ||
| Died alone | 41 (24.3) | 18 (20.2) | 40 (17.0) | 11 (17.2) | 0.635g | 0.180g |
| Staff did not know | 25 (14.8) | 18 (20.2) | 39 (16.6) | 11 (17.2) | ||
Dementia by facility type interaction was p<0.05 for these characteristics. For effectiveness of hygiene care, the p-value for dementia vs. cognitively intact is 0.004 in RC/AL and 0.024 in NH; for skin ulcer, the p-value for dementia vs. cognitively intact is 0.003 in RC/AL and 0.566 in NH.
P-values for score test from logistic regression with given measure of end-of-life experience as dependent variable and dementia status and facility type (RC/AL vs. NH) as predictors, and controlling for state, decedent age, and number of ADL dependencies, using GEE and specifying exchangeable correlation matrix to account for clustering of residents within facilities.
Ineffective treatment compared to combination of treatment effective and never an issue.
Any pain/shortness of breath (combination of treatment effective and ineffective treatment) compared to never an issue.
Because of change in skip pattern partway through data collection, IV fluids and use of feeding tube unknown for 115/581 = 19.7% of sample; other items missing for <5% of sample.
For facility, private room vs. shared room; those who died in hospital or other location excluded for this comparison.
For died in hospital vs. died in facility (shared room or private room); those who died in other location excluded for this comparison.
For died alone vs. someone present at death; those for whom the staff did not know if resident was alone at time of death excluded for this comparison.