Barriers to ACP
| Number of paediatricians who answered ‘often’ or ‘always’ for each question | p Value | ||
| Neurologists (n=186) | Haematologists (n=227) | ||
| Unrealistic family expectations | |||
| Differences in understanding the prognosis | |||
| Between physician and family | 94 (54) | 94 (42) | 0.07 |
| Between physician and patient | 93 (53) | 103 (46) | 0.37 |
| Lack of training | 93 (53) | 112 (51) | 0.91 |
| Insufficient laws and guidelines | 88 (50) | 74 (33) | 0.02 |
| Physician concerned about taking away patient’s hope | 85 (49) | 94 (43) | 0.75 |
| Family not ready to have the discussion | 86 (49) | 86 (39) | 0.97 |
| Unrealistic patient expectations | 87 (49) | 80 (36) | 0.28 |
| Ethical considerations | 85 (49) | 85 (38) | 0.24 |
| Family unable to fully comprehend the issue | 87 (49) | 69 (32) | <0.01 |
| Differences in understanding the prognosis between patients and family | 82 (47) | 87 (39) | 0.17 |
| Patient unable to fully comprehend the issue | 82 (47) | 68 (31) | 0.03 |
| Patient not ready to have the discussion | 83 (47) | 93 (42) | 0.79 |
| Physician does not know the right time to address the issue | 76 (43) | 96 (43) | 0.33 |
| Physician concerned about taking away family’s hope | 67 (38) | 67 (31) | 0.70 |
| Physician uncertain about the prognosis | 63 (36) | 58 (26) | 0.04 |
| Physician does not know the things to say | 60 (34) | 59 (27) | 0.68 |
| Conflict between parents and other family members | 58 (33) | 58 (27) | 0.95 |
| Physician not ready to have the discussion | 56 (32) | 59 (27) | 0.92 |
| Conflict between patient and parents | 52 (30) | 54 (25) | 0.79 |
| Lack of physician time | 49 (28) | 40 (18) | 0.04 |
| No relationship between physician and family | 47 (27) | 24 (11) | <0.01 |
| No relationship between physician and patient | 42 (24) | 23 (11) | <0.01 |
| Physician concerned about losing the trust of the patient | 34 (19) | 33 (15) | 0.460.29 |
| Physician concerned about losing the trust of the family | 33 (19) | 30 (14) | 0.57 |
| Physician considers ACP not that important | 27 (17) | 17 (8) | 0.01 |
| Unrealistic physician expectations | 27 (15) | 20 (9) | 0.49 |
| Physician concerned that the family will receive less attention from physicians | 27 (15) | 23 (10) | 0.40 |
| Physician concerned that the patient will receive less attention from physicians | 23 (13) | 22 (10) | 0.45 |
Data are presented as n (%). Percentage was calculated based on the number of respondents for each item.
p Values were calculated by logistic regression adjusted for sex, postgraduate experience and number of dying patients <18 years of age cared for.
ACP, advance care planning.