Table 4.
Caregiver reported specific challenges and symptoms at the end of life associated with increased caregiver difficulty, by location of patient death, for patients seen at the Palliative Care Center at the Chris Hani Bharagwanath Academic Hospital, May 2016-September 2017.
| Death at Home | Death in an Inpatient Facility | |||||||
|---|---|---|---|---|---|---|---|---|
| High Caregiver Difficulty* (n=28) |
Low Caregiver Difficulty* (n=45) |
All Caregivers (n=73) |
OR [95% CI] |
High Caregiver Difficulty* (n=34) |
Low Caregiver Difficulty* (n=67) |
All Caregivers (n=101) |
OR [95% CI] |
|
| Factors |
N (%)** |
N (%)** |
||||||
| Specific Challenges# | ||||||||
| Keeping the patient and environment clean | 4 (14.3) | 2 (4.4) | 6 (8.2) | 3.6 [0.62, 21.0] | 6 (17.7) | 1 (1.5) | 7 (6.9) | 14.1 [1.6, 123.0] † |
| Interactions with the patient | 11 (39.3) | 6 (13.3) | 17 (23.3) | 4.2 [1.3, 13.2]† | 10 (29.4) | 14 (20.9) | 24 (23.8) | 1.6 [0.6, 4.1] |
| End of Life Symptom§ | ||||||||
| Pain | 13 (46.4) | 10 (22.2) | 23 (31.5) | 3.0 [1.1, 8.4] † | 13 (38.2) | 16 (23.9) | 29 (28.7) | 2.0 [0.8, 4.8] |
| Urinary incontinence | 9 (32.1) | 7 (15.6) | 16 (21.9) | 2.6 [0.8, 8.0] | 8 (25.5) | 9(13.4) | 17 (16.8) | 2.0 [0.7, 5.7] |
| Fecal incontinence | 7 (25.0) | 5 (11.1) | 12 (16.4) | 2.7 [0.8, 9.4] | 7 (20.6) | 7 (10.5) | 14(13.9) | 2.2 [0.7, 7.0] |
| Insomnia | 6 (21.4) | 2 (4.4) | 8 (11.0) | 5.9 [1.1, 31.5] † | 9 (26.5) | 9(13.4) | 18 (17.8) | 2.3 [0.8, 6.5] |
| Fatigue | 27 (96.4) | 33 (73.3) | 60 (82.2) | 9.8 [1.2, 80.4]† | 32 (94.1) | 52 (77.6) | 84 (83.2) | 4.6 [0.99, 21.5] † |
| Lower ext. weakness | 25 (89.3) | 2 (68.9) | 56 (76.7) | 3.8 [0.97, 14.6] | 29 (85.3) | 47 (70.2) | 76 (75.3) | 2.5 [0.84, 7.3] |
| Upper & lower ext. weakness | 26 (92.9) | 29 (64.4) | 55 (75.3) | 7.2 [1.5, 34.2] † | 25 (73.5) | 45 (67.2) | 70 (69.3) | 1.4 [0.5, 3.4] |
| Shame | 6 (21.4) | 3 (6.7) | 9 (12.3) | 3.8 [0.9, 16.8] | 6 (17.7) | 2(4.5) | 9 (8.9) | 4.6 [1.1, 19.6] |
| Sadness | 7 (25.0) | 8 (17.8) | 15 (20.6) | 1.5 [0.5, 4.9] | 13 (38.2) | 11 (16.4) | 24 (23.8) | 3.2 [1.2, 8.1]† |
The “High Difficulty” group corresponds to caregivers who responded “A lot” to question of extent to which “caring for the patient was challenging,” and the “Low Difficulty” group represents the caregivers who respond “A little” or “Not at all” to the same question.
Column percentages
Caregivers were asked if they had experienced these specific challenges during the post-mortem interviews.
Fisher’s exact test p-value <0.05
Instances in which caregivers reported that the patient experienced “A lot” of each symptom at the end of life on the post-mortem interview