Background
Methods
Study design
Setting and data collection
Variables
Statistical analysis
Results
Characteristics | Total N = 149 (100%) | Cardiology n = 19 (13%) | Neonatology n = 57 (38%) | Neurology n = 36 (24%) | Oncology n = 37 (25%) |
---|---|---|---|---|---|
Age at death, Mdn (range) | |||||
in months | 6 (0 – 209) | 6 (1 – 109) | Na | 19 (1 – 207) | 101 (20 – 209) |
in years | 0.5 (0.0 – 17.4) | 0.5 (0.1 – 9.1) | Na | 1.6 (0.1 – 17.2) | 8.4 (1.7 – 17.4) |
Gender, n (%) | |||||
Female | 72 (48) | 10 (53) | 32 (56) | 15 (42) | 15 (40) |
Male | 77 (52) | 9 (47) | 25 (44) | 21 (58) | 22 (60) |
ICD-10 chapter, description, n (%) | |||||
II Neoplasms | 36 (24) | 0 (0) | 0 (0) | 0 (0) | 36 (97) |
III Blood/immune system | 1 (1) | 0 (0) | 0 (0) | 0 (0) | 1 (3)a |
IV Endocrine, nutritional, metabolic | 6 (4) | 0 (0) | 0 (0) | 6 (16) | 0 (0) |
VI Nervous system | 21 (14) | 0 (0) | 2 (4) | 19 (53) | 0 (0) |
IX Circulatory systemb | 5 (3) | 4 (21) | 0 (0) | 1 (3) | 0 (0) |
XVI Conditions originating in perinatal period | 45 (30) | 0 (0) | 44 (77) | 1 (3) | 0 (0) |
XVII Congenital, chromosomal | 35 (24) | 15 (79) | 11 (19) | 9 (25) | 0 (0) |
Gestational age (for the neonatology group only) | n = 52c | ||||
24 0/7 – 27 6/7 | Na | Na | 17 (33) | Na | Na |
28 0/7 – 31 6/7 | Na | Na | 8 (15) | Na | Na |
32 0/7 – 36 6/7 | Na | Na | 9 (17) | Na | Na |
37 0/7 - > 42 0/7 | Na | Na | 18 (35) | Na | Na |
Time since diagnosisd | |||||
in days, Mdn (range) | Na | Na | 4 (1 – 26) | Na | Na |
in months, Mdn (range) | 1 (0 – 205) | 7 (0 - 66) | Na | 9 (0 - 205) | 4 (0 - 139) |
in years, Mdn (range) | 0 (0 – 17) | 0.5 (0.5 – 5.5) | Na | 0.5 (0.0 – 17.0) | 0.5 (0.0 – 12.0) |
Diagnosis made prenatally | n = 147c | n = 34c | |||
Yes, n (%) | 31 (21) | 11 (58) | 13 (23) | 7 (21) | 0 (0) |
Place and circumstances of death
Total N = 149 (100%) | Cardiology n = 19 (13%) | Neonatology n = 57 (38%) | Neurology n = 36 (24%) | Oncology n = 37 (25%) | p-value | |
---|---|---|---|---|---|---|
Place of death, n (%) | < 0.001a | |||||
PICU | 63 (42) | 13 (67) | 27 (48) | 13 (36) | 10 (27) | |
NICU | 30 (20) | 0 (0) | 27 (48) | 3 (8) | 0 (0) | |
Hospital ward / long-term institution | 26 (18) | 2 (11) | 0 (0) | 13 (36) | 11 (30) | |
Home | 25 (17) | 2 (11) | 2 (3) | 7 (20) | 14 (38) | |
Emergency department / Transport | 5 (3) | 2 (11) | 1 (1) | 0 (0) | 2 (5) | |
CPRb | ||||||
Yes, n (%) | 26 (17) | 7 (37) | 6 (11) | 7 (19) | 6 (16) | 0.097c |
DNR order | ||||||
Yes, n (%) | 91 (62) | 11 (58) | 20 (35) | 33 (92) | 27 (77) | < 0.001c |
DNR order change within the last four weeks of life | ||||||
Yes, n (%) | 51 (57) | 7 (64) | 18 (90) | 13 (41) | 13 (48) | 0.002c |
Withdrawal of life-sustaining interventionsd | n = 93 | n = 13 | n = 54 | n = 16 | n = 10 | |
Yes, n (%) | 78 (84) | 10 (77) | 49 (91) | 12 (75) | 7 (70) | 0.203c |
Interventions, medication and symptoms
Total N = 149 (100%) | Cardiology n = 19 (13%) | Neonatology n = 57 (38%) | Neurology n = 36 (24%) | Oncology n = 37 (25%) | p-value | |
---|---|---|---|---|---|---|
Interventions requiring anaesthesia | n = 148a | n = 35a | ||||
Yes, n (%) | 51 (34) | 11 (58) | 21 (37) | 6 (17) | 13 (35) | 0.021b |
Mechanical ventilation | ||||||
Yes, n (%) | 94 (63) | 14 (74) | 55 (97) | 15 (42) | 10 (27) | < 0.001b |
ECMO | ||||||
Yes, n (%) | 7 (5) | 4 (21) | 3 (5) | 0 (0) | 0 (0) | < 0.001b |
Presence of CAD | n = 148a | n = 36a | ||||
Yes, n (%) | 106 (72) | 14 (74) | 55 (97) | 12 (33) | 25 (69) | < 0.001b |
Enteral feeds via nasogastric or gastrostomy tube | n = 148a | n = 35a | ||||
Yes, n (%) | 114 (77) | 17 (90) | 51 (90) | 33 (94) | 13 (35) | < 0.001b |
Medication count in the last week of lifec | n = 146a | n = 35a | n = 35a | |||
Mdn, (range) | 12 (1 - 46) | 19 (3 - 45) | 12 (1 - 34) | 10 (3 - 39) | 13 (4 - 46) | 0.006b |
Mean, (SD) | 14 (9.15) | 21 (11.73) | 12 (7.02) | 13 (8.82) | 15 (9.69) | |
Pain medication | n = 148a | n = 35a | ||||
Yes, n (%) | 140 (95) | 18 (95) | 54 (95) | 33 (94) | 35 (95) | 1.000b |
Anxiolytic medication | n = 145a | n = 35a | n = 34a | |||
Yes, n (%) | 84 (58) | 14 (74) | 27 (47) | 18 (51) | 25 (74) | 0.032b |
Antiemetic medication | n = 146a | n = 35a | n = 35a | |||
Yes, n (%) | 25 (17) | 2 (11) | 0 (0) | 0 (0) | 23 (66) | < 0.001b |
Hospital and community healthcare utilisation
Total N = 149 (100%) | Cardiology n = 19 (13%) | Neonatology n = 57 (38%) | Neurology n = 36 (24%) | Oncology n = 37 (25%) | p-value | |
---|---|---|---|---|---|---|
Hospital days, Mdn (range) | 6 (0 - 28) | 20 (0 - 28) | 5 (1 - 26) | 7 (0 - 28) | 4 (0 - 28) | 0.035a |
Care setting before hospital admissionb, n (%) | n = 88 | n = 17 | n = 23 | n = 26 | n = 22 | |
Home | 37 (42) | 11 (64) | 0 (0) | 16 (62) | 10 (45) | NAc |
Other hospital | 35 (40) | 3 (18) | 23 (100) | 4 (15) | 5 (23) | NAc |
Emergency department | 8 (9) | 3 (18) | 0 (0) | 4 (15) | 1 (5) | NAc |
Outpatient clinic | 7 (8) | 0 (0) | 0 (0) | 1 (4) | 6 (27) | NAc |
Long-term institution | 1 (1) | 0 (0) | 0 (0) | 1 (4) | 0 (0) | NAc |
Patients at home at least for one day, n (%) | 72 (48) | 11 (58) | 3 (5) | 27 (75) | 31 (84) | < 0.001a |
Days spent at home, Mdn (range) | 0 (0 - 28) | 8 (0 - 28) | 0 (0 - 16) | 21 (0 - 28) | 24 (0 - 28) | 0.001a |
Care days with community care serviced, | n = 72 | n = 11 | n = 3 | n = 27 | n = 31 | |
Mdn (range) | 1 (0 - 28) | 0 (0 - 24) | 1 (0 - 5) | 5 (0 - 28) | 0 (0 - 28) | 0.001a |
Hours of care by community care serviced | n = 36 | n = 5 | n = 2 | n = 15 | n = 14 | |
Mdn (range) | 34 (2 - 315) | 12 (7 - 190) | 6 (3 - 8) | 38 (4 - 315) | 23 (2 - 108) | 0.111a |
Type of community care service | ||||||
Family education/support, n (%) | 35 (97) | 5 (100) | 2 (100) | 14 (93) | 14 (100) | NAc |
Needs assessment, n (%) | 31 (86) | 4 (80) | 1 (50) | 13 (87) | 13 (93) | NAc |
Monitoring of vital signs/general condition, n (%) | 29 (81) | 5 (100) | 2 (100) | 13 (87) | 9 (64) | NAc |
Administration of medication, n (%) | 25 (69) | 5 (100) | 0 (0) | 10 (67) | 10 (71) | NAc |
Interventions related to enteral feeds, n (%) | 22 (61) | 5 (100) | 1 (50) | 13 (87) | 3 (21) | NAc |
Respiratory interventions, n (%) | 18 (50) | 2 (40) | 0 (0) | 11 (73) | 5 (36) | NAc |
Interventions related to excretion, n (%) | 14 (39 | 1 (20) | 0 (0) | 6 (40) | 7 (50) | NAc |