Table 4.
Experience of Dying and Palliative Care Reported by Family Members of Residents (N=293) who Died With and Without Dementia in Residential Care / Assisted Living (RC/AL) Communities and Nursing Homes (NH)
| RC/AL | Nursing home | p-valuea | ||||
|---|---|---|---|---|---|---|
| Decedents with Dementia | Decedents without Dementia | Decedents with Dementia | Decedents without Dementia | Dementia | Facility type (among those with dementia) | |
| N (%) or Mean (SD) | ||||||
| Family involvement in last month of life | ||||||
| Days visited in last month | 16.2 (10.9) | 13.3 (9.7) | 15.5 (10.7) | 17.4 (10.5) | 0.684 | 0.218 |
| Ever spoke to resident by phone | 9 (9.0) | 31 (62.0) | 10 (9.3) | 14 (45.2) | <0.001 | 0.702 |
| Days spoke w/staff about resident | 17.4 (10.4) | 12.0 (9.7) | 16.2 (10.6) | 16.1 (10.8) | 0.178 | 0.144 |
| Family present at death | 38 (40.4) | 20 (43.5) | 40 (40.8) | 7 (23.3) | 0.314 | 0.732 |
| Most influential person in care decisions | ||||||
| Residentb | 27 (27.0) | 22 (45.8) | 24 (22.4) | 7 (24.1) | 0.047 | 0.152 |
| Family | 68 (68.0) | 23 (47.9) | 79 (73.8) | 22 (75.9) | ||
| Physician | 2 (2.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) | ||
| Non-physician staff | 3 (3.0) | 3 (6.3) | 4 (3.7) | 0 (0.0) | ||
| Family involvement in care (at least once a week) | ||||||
| Helped with bathing, toileting, or dressing | 17 (16.8) | 11 (22.4) | 17 (16.0) | 6 (20.0) | 0.387 | 0.566 |
| Helped with grooming | 27 (27.0) | 9 (18.4) | 37 (34.9) | 13 (43.3) | 0.714 | 0.744 |
| Helped decedent walk in facility | 39 (39.0) | 18 (36.7) | 43 (40.6) | 12 (40.0) | 0.503 | 0.764 |
| Was involved at mealtime | 61 (61.0) | 23 (46.9) | 60 (56.6) | 16 (53.3) | 0.810 | 0.239 |
| Helped with financial, legal or other management activities | 79 (79.0) | 34 (69.4) | 72 (67.9) | 20 (66.7) | 0.259 | 0.011 |
| Monitored/oversaw staff care | 86 (86.0) | 39 (79.6) | 89 (84.0) | 23 (76.7) | 0.478 | 0.350 |
| Physician communication with family during the last month of life | ||||||
| Family familiar with MD | 95 (95.0) | 45 (90.0) | 91 (84.3) | 26 (86.7) | 0.704 | 0.015 |
| Family ever met MD | 79 (79.0) | 41 (82.0) | 66 (61.7) | 17 (56.7) | 0.640 | 0.010 |
| Family-MD communication score | 1.78 (1.05) | 2.19 (0.90) | 1.52 (1.01) | 1.50 (0.95) | 0.035 | 0.009 |
| Advance care planning | ||||||
| Resident able to participate in decisions about care | 11 (11.0) | 25 (50.0) | 8 (7.4) | 15 (50.0) | <0.001 | 0.212 |
| Discussed death/dying with resident | 57 (57.0) | 33 (67.3) | 47 (43.5) | 22 (73.3) | 0.030 | 0.086 |
| Had durable health care POA | 96 (96.0) | 46 (92.0) | 101 (93.5) | 27 (90.0) | 0.988 | 0.485 |
| Extent resident preferences known | ||||||
| Living will | 93 (92.1) | 43 (87.8) | 92 (86.0) | 21 (70.0) | 0.097c | 0.252c |
| No document, knew preferences | 6 (5.9) | 2 (4.1) | 9 (8.4) | 8 (26.7) | ||
| No document, did not know preferences | 2 (2.0) | 4 (8.2) | 6 (5.6) | 1 (3.3) | ||
| Decision-making regarding interventions | ||||||
| Decision made about: | ||||||
| CPR | 89 (89.0) | 44 (91.7) | 97 (90.7) | 24 (82.8) | 0.975 | 0.837 |
| Decided to do CPR | 2 (2.0) | 2 (4.2) | 3 (2.8) | 2 (6.9) | 0.291d | 0. 716 d |
| Feeding tube | 82 (82.8) | 39 (81.3) | 89 (83.2) | 21 (72.4) | 0.542 | 0.782 |
| Decided to use feeding tube | 3 (3.1) | 0 (0.0) | 8 (7.6) | 2 (6.9) | 0.561 | 0.078 |
| Comfort measures only | 85 (85.9) | 39 (83.0) | 95 (88.8) | 22 (75.9) | 0.274 | 0.660 |
| Decided to use comfort measures only | 71 (71.7) | 35 (74.5) | 79 (73.8) | 20 (69.0) | 0.724 | 0.974 |
| Family global impressions of care during last month of life | ||||||
| Assessment of overall quality of care | ||||||
| Poor/fair | 10 (10.0) | 7 (14.3) | 8 (7.5) | 4 (13.3) | ||
| Good | 18 (18.0) | 5 (10.2) | 37 (34.6) | 14 (46.7) | ||
| Very good | 72 (72.0) | 37 (75.5) | 62 (57.9) | 12 (40.0) | 0.288e | 0.304e |
| Would have preferred more involvement in care | 22 (22.0) | 14 (28.6) | 30 (28.0) | 11 (36.7) | 0.438 | 0.235 |
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.
Could be resident by him/herself or through advance directives; statistical comparisons compare this group to all other groups combined.
Because of small number not reporting living will, this group compared to the other two groups combined.
Because of small number of events, adjusted model does not converge; p-value for dementia status is therefore adjusted only for facility type; p-value for facility type among dementia group is unadjusted.
These tests compare those rating care as very good compared to the combination of those rating care poor, fair, or good.