Table 3.
Patient reported symptom burdens and caregiver reported specific challenges and symptoms at the end of life, by severity of home caregiver’s self-reported difficulty with caring for the patient at the end of life for patients seen at the Palliative Care Center at the Chris Hani Bharagwanath Academic Hospital, May 2016-September 2017.
| High Caregiver Difficulty* (n=62) |
Low Caregiver Difficulty* (n=112) |
All Caregivers (n=174) |
OR [95% CI] |
|
|---|---|---|---|---|
| Characteristics |
N (%)** |
|||
| Specific Challenges# | ||||
| Lack of access to palliative medications | 3 (4.8) | 1 (0.9) | 4 (2.3) | 5.64 [0.57, 55.46] |
| Keeping the patient and environment clean | 10(16.1) | 3 (2.7) | 13 (7.5) | 6.99 [1.84, 26.5]† |
| Interactions with the patient | 21 (33.9) | 20 (17.9) | 41 (23.6) | 2.36 [1.15, 4.81] † |
| Conflict with the family | 9 (14.5) | 9 (8.0) | 18 (10.3) | 1.94 [0.73, 5.19] |
| Interactions with healthcare providers | 6 (9.7) | 9 (8.0) | 15 (8.6) | 1.23 [0.42, 3.62] |
| Lack of patient cooperation | 3 (4.8) | 4(3.6) | 7 (4.0) | 1.37 [0.30, 6.34] |
| Physical symptom burden†† | ||||
| >75th percentile | 22 (35.5) | 34 (30.4) | 56 (32.2) | 1 [Ref] |
| 51–75th percentile | 8 (12.9) | 25 (22.3) | 33 (19.0) | 0.49 [0.19, 1.29] |
| 26–50th percentile | 18 (29.0) | 28 (25.0) | 46 (26.4) | 0.99 [0.45, 2.21] |
| ≤25th percentile | 14 (22.6) | 25 (22.3) | 39 (22.4) | 0.87 [0.37, 2.02] |
| Emotional symptom burden†† | ||||
| >75th percentile | 15 (24.2) | 27 (24.1) | 42 (24.1) | 1 [Ref] |
| 51–75th percentile | 19(30.7) | 24 (21.4) | 43 (24.7) | 1.43 [0.60, 3.41] |
| 26–50th percentile | 13 (21.0) | 37 (33.0) | 50 (28.7) | 0.63 [0.26, 1.54] |
| ≤25th percentile | 15 (24.2) | 24 (21.4) | 39 (22.4) | 1.13 [0.46, 2.77] |
| End of Life Symptoms§ | ||||
| Pain | 26 (41.9) | 26 (23.2) | 52 (29.9) | 2.39 [1.22, 4.66]† |
| Shortness of breath | 20 (32.3) | 37 (33.0) | 57 (32.8) | 0.97 [0.50, 1.87] |
| Urinary incontinence | 17 (27.4) | 16 (14.3) | 33 (19.0) | 2.27 [1.05, 4.89] † |
| Fecal incontinence | 14 (22.6) | 12 (10.7) | 26 (14.9) | 2.43 [1.04, 5.65] † |
| Nausea/vomiting | 8(12.9) | 9 (8.0) | 17 (9.8) | 1.70 [0.62, 4.64] |
| Insomnia | 15 (24.2) | 11 (9.8) | 26 (14.9) | 2.93 [1.25, 6.87]† |
| Constipation | 4 (6.5) | 4(3.6) | 8 (4.6) | 1.86 [0.45, 7.72] |
| Diarrhea | 7 (11.3) | 11 (9.8) | 18 (10.3) | 1.17 [0.43, 3.19] |
| Fatigue | 59 (95.2) | 85 (75.9) | 144 (82.8) | 6.25 [1.81, 21.55]† |
| Lower ext. weakness | 54 (87.1) | 69.6 | 132 (75.9) | 2.94 [1.26, 6.85]† |
| Upper & lower ext. weakness | 51 (82.3) | 74 (66.1) | 125 (71.8) | 2.38 [1.11, 5.09]† |
| Bedsores | 4 (6.5) | 5 (4.5) | 9 (5.2) | 1.48 [0.38, 5.71] |
| Edema | 19 (30.7) | 36 (32.1) | 55 (31.6) | 0.93 [0.48, 1.82] |
| Fever | 4 (6.5) | 3 (2.7) | 7 (4.0) | 2.51 [0.54, 11.58] |
| Thirst | 3 (4.8) | 2 (1.8) | 5 (2.9) | 2.80 [0.45, 17.21] |
| Seizures | 1 (1.6) | 0 (0.0) | 1 (0.6) | n/a |
| Lack of “peace” | 7 (11.3) | 13 (11.6) | 20 (11.5) | 0.97 [0.37, 2.57] |
| Shame | 12 (19.4) | 6 (5.4) | 18 (10.3) | 4.24 [1.50, 11.95]† |
| Feeling of being a burden | 15 (24.2) | 25 (22.3) | 40 (23.0) | 1.11 [0.53, 2.31] |
| Lack of acceptance | 7 (11.3) | 22 (19.6) | 29 (16.7) | 0.52 [0.21, 1.30] |
| Sadness | 20 (32.3) | 19 (17.0) | 39 (22.4) | 2.33 [1.13, 4.82]† |
| Fear of death | 7 (11.3) | 12 (10.7) | 19 (10.9) | 1.06 [0.39, 2.85] |
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
Total symptom burden as reported by patients on their last recorded African Palliative Care Association’s African Palliative Care Outcome Scale
Instances in which caregivers reported that the patient experienced “A lot” of each symptom at the end of life on the post-mortem interview