Table 4.
Symptom control and communication as reported by bereaved relatives within the Regional CODE™ surveya
| Hospice (n = 82) | Hospital (n = 218) | Community (n = 54) | All organisations (n = 354) | |
|---|---|---|---|---|
| In your opinion, during the last two days, did s/he appear to be in pain? | ||||
| Yes, all of the time | 6 (7.6) | 26 (12.1) | 5 (9.4) | 37 (10.7) |
| Yes, some of the time | 37 (46.8) | 81 (37.9) | 25 (47.2) | 143 (41.3) |
| No, s/he did not appear to be in pain | 36 (45.6) | 107 (50.0) | 23 (43.3) | 166 (48.0) |
| Missing | 3 | 4 | 1 | 8 |
| In your view, did the doctors and nurses do enough to help relieve the pain? b | ||||
| Yes, all of the time | 64 (84.2) | 116 (64.1) | 34 (73.9) | 214 (70.6) |
| Yes, some of the time | 11 (14.5) | 50 (27.6) | 11 (23.9) | 72 (23.7) |
| No, not at all | 1 (1.3) | 15 (8.2) | 1 (2.2) | 17 (5.6) |
| Missing | 3 | 3 | 1 | 7 |
| N/A, s/he was not in pain | 3 (3.8) | 34 (15.8) | 7 (13.2) | 44 (12.7) |
| In your opinion, during the last two days, did s/he appear to be restless? | ||||
| Yes, all of the time | 6 (7.5) | 38 (17.8) | 7 (13.5) | 51 (14.7) |
| Yes, some of the time | 41 (51.2) | 103 (48.1) | 30 (57.7) | 174 (50.3) |
| No, s/he did not appear to be restless | 33 (41.3) | 73 (34.1) | 15 (28.8) | 121 (35.0) |
| Missing | 2 | 4 | 2 | 8 |
| In your view, did the doctors and nurses do enough to help relieve the restlessness? b | ||||
| Yes, all of the time | 39 (71.0) | 73 (44.5) | 27 (64.2) | 139 (53.3) |
| Yes, some of the time | 16 (29.0) | 66 (40.2) | 14 (33.3) | 96 (36.8) |
| No, not at all | 0 (0.0) | 25 (15.2) | 1 (2.4) | 26 (10.0) |
| Missing | 3 | 5 | 1 | 9 |
| N/A, s/he was not restless | 24 (30.4) | 49 (23.0) | 11 (20.8) | 84 (24.3) |
| In your opinion, during the last two days, did s/he appear to have a ‘noisy rattle’ to his/her breathing? | ||||
| Yes, all of the time | 14 (18.7) | 37 (17.5) | 6 (11.1) | 57 (16.8) |
| Yes, some of the time | 36 (48.0) | 66 (31.3) | 26 (49.1) | 128 (37.8) |
| No, s/he did not have a ‘noisy rattle’ to his / her breathing | 25 (33.3) | 108 (51.2) | 21 (39.6) | 154 (45.4) |
| Missing | 7 | 7 | 1 | 15 |
| In your view, did the doctors and nurses do enough to help relieve the ‘noisy rattle’ to his/her breathing? b | ||||
| Yes, all of the time | 32 (64.0) | 42 (38.5) | 16 (53.3) | 90 (47.6) |
| Yes, some of the time | 15 (30.0) | 47 (43.1) | 9 (30.0) | 71 (37.6) |
| No, not at all | 3 (6.0) | 20 (18.3) | 5 (16.7) | 28 (14.8) |
| Missing | 8 | 10 | 4 | 22 |
| N/A, there was no ‘noisy rattle’ to his / her breathing | 24 (32.4) | 99 (47.6) | 20 (40.0) | 143 (43.1) |
| The nurses had time to listen and discuss his/her condition with me. | ||||
| Strongly agree | 50 (63.3) | 68 (31.9) | 30 (58.5) | 148 (43.1) |
| Agree | 26 (32.9) | 78 (36.6) | 16 (31.4) | 120 (35.0) |
| Neither agree nor disagree | 1 (1.3) | 24 (11.3) | 3 (5.9) | 28 (8.2) |
| Disagree | 2 (2.5) | 27 (12.7) | 2 (3.9) | 31 (9.0) |
| Strongly disagree | 0 (0.0) | 16 (7.5) | 0 (0.0) | 16 (4.7) |
| Missing | 3 | 5 | 3 | 11 |
| The doctors had time to listen and discuss his/her condition with me. | ||||
| Strongly agree | 55 (69.6) | 63 (30.0) | 31 (62.0) | 149 (44.0) |
| Agree | 24 (30.4) | 87 (41.1) | 14 (28.0) | 125 (36.9) |
| Neither agree nor disagree | 0 (0.0) | 23 (11.0) | 3 (6.0) | 26 (7.7) |
| Disagree | 0 (0.0) | 21 (10.0) | 1 (2.0) | 22 (6.5) |
| Strongly disagree | 0 (0.0) | 16 (7.6) | 1 (2.0) | 17 (5.0) |
| Missing | 3 | 8 | 4 | 15 |
| Did any of the healthcare team discuss with you whether giving fluids through a ‘drip’ would be appropriate in the last two days of life? | ||||
| Yes | 23 (29.1) | 77 (36.7) | 10 (18.9) | 110 (32.2) |
| No | 41 (51.9) | 107 (50.0) | 38 (71.7) | 186 (54.4) |
| Don’t know | 15 (19.0) | 26 (12.4) | 5 (9.4) | 46 (13.5) |
| Missing | 3 | 8 | 1 | 12 |
| Would a discussion about the appropriateness of giving fluids through a ‘drip’ in the last two days of life have been helpful? 4 | ||||
| Yes | 27 (47.4) | 83 (57.2) | 14 (32.6) | 124 (50.6) |
| No | 30 (52.6) | 62 (42.8) | 29 (67.4) | 121 (49.4) |
| Missing | 6 | 19 | 1 | 26 |
| N/A, we had these types of discussions | 19 (25.0) | 54 (27.1) | 10 (18.9) | 83 (25.3) |
| Did a member of the healthcare team talk to you about what to expect when s/he was dying (e.g. symptoms that may arise)? | ||||
| Yes | 47 (58.8) | 100 (47.2) | 29 (55.8) | 176 (51.2) |
| No | 33 (41.2) | 112 (52.8) | 23 (44.2) | 168 (48.8) |
| Missing | 2 | 6 | 2 | 10 |
| Would a discussion about what to expect when s/he was dying have been helpful? b | ||||
| Yes | 29 (72.5) | 92 (77.3) | 23 (82.1) | 144 (77.0) |
| No | 11 (27.5) | 27 (22.7) | 5 (17.9) | 43 (23.0) |
| Missing | 8 | 17 | 1 | 26 |
| N/A, we had these types of discussions | 34 (45.9) | 82 (40.8) | 25 (47.2) | 141 (43.0) |
amissing data has been presented as numbers but not included in the percentage calculations
bIn addition to the ‘missing’ participants who did not provide an answer to these questions, the response options ‘N/A, was not in pain / s/he was not restless /there was no ‘noisy rattle’ to his / her breathing’ were also removed from sample when calculating the overall percentages