| Variable | No. (%) of patients | ||
|---|---|---|---|
| Hospices | Other programs | Total | |
| All patients | n = 517 | n = 884 | n = 1401 |
| Age at referral, yr* | |||
| < 1† | 160 (30.9) | 348 (39.4) | 508 (36.2) |
| 1-4 | 129 (25.0) | 155 (17.5) | 284 (20.3) |
| 5-9 | 101 (19.5) | 146 (16.5) | 247 (17.6) |
| 10-14 | 78 (15.1) | 143 (16.2) | 221 (15.8) |
| 15-25‡ | 46 (8.9) | 88 (10.0) | 134 (9.6) |
| Unknown | 3 (0.6) | 4 (0.4) | 7 (0.5) |
| Primary diagnosis§ | |||
| Congenital malformations, deformations and chromosomal abnormalities | 124 (24.0) | 278 (31.4) | 402 (28.7) |
| Diseases of the nervous system | 219 (42.4) | 156 (17.6) | 375 (26.8) |
| Neoplasms | 66 (12.8) | 155 (17.5) | 221 (15.8) |
| Endocrine, nutritional and metabolic diseases | 42 (8.1) | 106 (12.0) | 148 (10.6) |
| Conditions originating in prenatal period | 25 (4.8) | 77 (8.7) | 102 (7.3) |
| Mental and behavioural disorders | 12 (2.3) | 14 (1.6) | 26 (1.9) |
| Certain infectious and parasitic diseases | 6 (1.2) | 19 (2.1) | 25 (1.8) |
| External causes of morbidity and mortality¶ | 6 (1.2) | 19 (2.1) | 25 (1.8) |
| Other | 17 (3.3) | 59 (6.7) | 76 (5.4) |
| Unknown | 0 (0) | 1 (0.1) | 1 (0.1) |
| Patients alive at end of study period (Dec. 31, 2012)** | n = 363 | n = 574 | n = 937 |
| Time from referral to end of study period, d§ | |||
| ≤ 30 | 31 (8.5) | 75 (13.1) | 106 (11.3) |
| 31-90 | 9 (2.5) | 53 (9.2) | 62 (6.6) |
| 91-180 | 22 (6.1) | 57 (9.9) | 79 (8.4) |
| 181-365 | 40 (11.0) | 107 (18.6) | 147 (15.7) |
| > 365 | 261 (71.9) | 282 (49.1) | 543 (58.0) |
| Deceased patients | n = 124 | n = 307 | n = 431 |
| Location of death§ | |||
| Critical care/emergency department | 22 (17.7) | 83 (27.0) | 105 (24.4) |
| Home | 21 (16.9) | 71 (23.1) | 92 (21.3) |
| General hospital unit | 16 (12.9) | 69 (22.5) | 85 (19.7) |
| Hospice/palliative care bed | 52 (41.9) | 14 (4.6) | 66 (15.3) |
| Labour and delivery unit | 6 (4.8) | 35 (11.4) | 41 (9.5) |
| Community hospital | 5 (4.0) | 21 (6.8) | 26 (6.0) |
| Other/unknown | 2 (1.6) | 14 (4.6) | 16 (3.7) |
| Time from referral to death, d§ | |||
| ≤ 1 | 7 (5.6) | 42 (13.7) | 49 (11.4) |
| 2-7 | 12 (9.7) | 49 (16.0) | 61 (14.2) |
| 8-30 | 28 (22.6) | 83 (27.0) | 111 (25.8) |
| 31-90 | 22 (17.7) | 46 (15.0) | 68 (15.8) |
| 91-180 | 13 (10.5) | 29 (9.4) | 42 (9.7) |
| 181-365 | 9 (7.2) | 23 (7.5) | 32 (7.4) |
| > 365 | 32 (25.8) | 32 (10.4) | 64 (14.8) |
| Unknown | 1 (0.8) | 3 (1.0) | 4 (0.9) |
| Variable | No. (%) of patients | ||
| Hospices | Other programs | Total | |
| Time from DNR order to death, d | |||
| ≤ 1 | 18 (14.5) | 50 (16.3) | 68 (15.8) |
| 2-7 | 22 (17.7) | 57 (18.6) | 79 (18.3) |
| 8-30 | 26 (21.0) | 69 (22.5) | 95 (22.0) |
| 31-90 | 6 (4.8) | 27 (8.8) | 33 (7.6) |
| 91-180 | 5 (4.0) | 14 (4.6) | 19 (4.4) |
| 181-365 | 3 (2.4) | 6 (2.0) | 9 (2.1) |
| > 365 | 17 (13.7) | 15 (4.9) | 32 (7.4) |
| No DNR order | 27 (21.8) | 21 (6.8) | 48 (11.1) |
| DNR status unknown | 0 (0) | 48 (15.6) | 48 (11.1) |
Note: DNR = do not resuscitate.
*p for comparison < 0.01.
†Includes 71 antenatal consults, 25 in hospices and 46 in other programs.
‡Six patients aged 20-25 years were included in the sample. They may have continued in pediatric care because of severe developmental disabilities or because death was considered to be imminent and a transfer to new care providers was seen as not being in the patient's best interests.
§p for comparison < 0.001.
¶E.g., attempted homicide, accident, complications of medical or surgical care.
**Patients transferred to adult care (n = 21) or discharged from palliative care (n = 12) were not included as their status on Dec. 31, 2012 was unknown.