Table 3.
Variables referring to the understanding of the dementia and associations with patient’s comfort when dying
| Variable |
Response% or mean (SD) |
Mean EOLD-CAD patient comfort score at the end of life (SD) |
Difference in mean patient comfort relative to the reference group or per unit increase on scale |
|
|---|---|---|---|---|
| Unadjusted (95% CI) | Adjusteda (95% CI) | |||
|
Families (baseline assessment, upon admission) |
|
|
|
|
| (1) Comprehension of complications |
|
(n = 161; overall: 34.1 SD 5.6) |
(n = 161) |
(n = 151) |
| - understood |
50 |
33.9 (6.5) |
reference |
reference |
| - not understood |
32 |
33.8 (4.7) |
−0.1 (−2.1; 1.9) |
−0.3 (−2.4; 1.9) |
| - refused (do not know and similar comments) |
18 |
35.3 (4.5) |
1.4 (−0.7; 3.4) |
0.9 (−1.1; 2.9) |
| |
|
|
P = 0.31b |
P = 0.50b |
| (2) Comprehension of prognosis: life expectancy |
|
(n = 161; overall: 34.1 SD 5.6) |
(n = 161) |
(n = 151) |
| - 12 months or less (<1 month: 1%, 1 to 6 months: 5%, |
|
|
|
|
| 7 to 12 months: 9%) |
15 |
34.1 (7.5) |
reference |
reference |
| - more than 12 months |
32 |
33.7 (5.7) |
−0.4 (−3.5; 2.7) |
−0.6 (−3.6;2.3) |
| - do not know |
53 |
34.4 (5.0) |
0.3 (−2.9; 3.4) |
−0.6 (−3.5;2.4) |
| |
|
|
P = 0.82b |
P = 0.91b |
| (3) Having been counseled on health problems in later stages |
|
(n = 161; overall: 34.1 SD 5.6) |
(n = 161) |
(n = 151) |
| -yes |
39 |
34.7 (5.7) |
reference |
reference |
| -no |
61 |
33.8 (5.6) |
−0.9 (−2.6; 0.9) |
−0.9 (−2.8;1.1) |
| (4) Having been counseled on how long patient may live |
|
(n = 160; overall: |
(n = 160) |
(n = 150) |
| |
34.1 (5.6) |
|
|
|
| -yes |
21 |
34.5 (6.2) |
reference |
reference |
| -no |
79 |
34.0 (5.5) |
−0.6 (−2.7; 1.6) |
−0.6 (−2.8;1.6) |
| (5) Perception of dementia as “a disease you can die from” |
|
(n = 160 overall) |
(n = 160) |
(n = 150) |
| - 1 to 5 scale, coefficient bc |
2.5 (1.2) |
34.2 SD 5.6 |
b = −0.7 (−1.5; -0.01) |
b = −0.8 (−1.5;-0.06) |
|
- completely agree |
29 |
35.1 (5.6) |
reference |
reference |
|
- partly agree |
14 |
34.9 (7.1) |
−0.1 (−3.4; 3.1) |
−0.1 (−3.3; 3.1) |
|
- neither agree, nor disagree |
13 |
34.8 (4.6) |
−0.3 (−2.7; 2.0) |
−1.0 (−3.6; 1.6) |
|
- partly disagree |
8 |
33.8 (4.4) |
−1.2 (−4.3; 1.8) |
−1.6 (−4.3;1.1) |
|
- completely disagree |
9 |
31.5 (5.5) |
−3.6 (−6.5; -0.7) |
−3.6 (−6.5;-0.7) |
|
- do not know |
28 |
33.5 (5.6) |
−1.5 (−4.5; 1.4) |
−1.5 (−4.5; 1.6) |
|
Physicians |
|
|
|
|
| (6) Comprehension of prognosis: perceived life expectancy (baseline) |
|
(n = 150; overall: 34.4 SD 5.4) |
(n = 150) |
(n = 138) |
| - 12 months or less (<1 month: 1%, 1 to 6 months: 9%, 7 to 12 months: 16%) |
25 |
33.6 (6.5) |
reference |
reference |
| - more than 12 months |
59 |
34.4 (5.0) |
0.8 (−1.5; 3.2) |
0.3 (−2.1; 2.8) |
| - do not know |
16 |
35.5 (5.1) |
1.9 (−0.9;4.7) |
1.2 (−1.7; 4.1) |
| |
|
|
P = 0.39b |
P = 0.67b |
| (7) Having counseled how long the patient may live (baseline) |
|
(n = 150; overall: |
(n = 150) |
(n = 138) |
| 34.4 SD 5.4) |
|
|
||
| -yes |
21 |
34.9 (4.9) |
reference |
reference |
| -no |
79 |
34.2 (5.5) |
−0.7 (−2.7; 1.3) |
−0.8 (−2.8;1.3) |
| (8) Perception of dementia as “a disease you can die from” (midway study) |
|
(n = 144 overall) |
(n = 144) |
(n = 138) |
| - 1 to 5 scale, coefficient bc |
4.7 (0.8) |
34.1 SD 5.7 |
b = −1.0 (−2.4; 0.4) |
b = −1.0 (−2.2; 0.2) |
|
- completely agree |
85 |
34.2 (5.9) |
reference |
reference |
|
- partly agree |
9 |
35.8 (2.3) |
1.5 (0.1; 2.9) |
1.8 (0.5; 3.1) |
|
- neither agree, nor disagree |
3 |
30.5 (5.4) |
−3.7 (−7.7; 0.3) |
−3.1 (−7.3;1.2) |
|
- partly disagree |
0 |
- |
- |
- |
|
- completely disagree |
3 |
29.6 (7.3) |
−4.6 (−11; 2.2) |
−4.9 (−11;1.3) |
|
Families and physicians |
|
|
|
|
| Perception of dementia as “a disease you can die from,” 2 to 10 scale, coefficient bc | 8.2 (1.5) | (n = 160 overall) 34.2 SD 5.6 | (n = 160) b = −0.8 (−1.4;-0.2) | (n = 143) b = −0.9 (−1.5;-0.2)d |
EOLD-CAD, End-of-life in Dementia-Comfort Assessment in Dying scale (possible range: 14 to 42, higher scores represent better comfort).
aAdjusted for potential confounders: assessment of EOLD-CAD by physician versus nurse; for three variables as they related to the time of the patient’s death: families’ baseline understanding, the physician’s assessment of perception of dementia, and time since the first death in the study; and family education when applicable (for example, no adjustment for family variables in analyzing associations with physician variables only). Adjustment was without imputation which explains the lower n. With simple imputation of mean or median as appropriate, confidence intervals were minimally smaller and coefficients were similar.
bThe P-values refer to GEE versions of ANOVA (unadjusted P-value) or ANCOVA (adjusted).
cb is the regression coefficient for 1-point increment disagreement, where “neither agree, nor disagree” is combined with “don’t know” (families).
dThe coefficients and confidence intervals were similar (adjusted: b = −0.9 (−1.5; -0.3)) when eight cases in which the physician completed the after-death assessment and baseline assessment at the same time, were excluded from the analyses.