Article Figures & Tables
Tables
- Table 1: Program staffing and number of children receiving care at programs offering specialized pediatric palliative care in Canada in 2012
Program Year program started No. of patients Staffing, FTE Programs including free-standing hospice* Canuck Place Children's Hospice/BC Children's Hospital, Vancouver 1995 250 1.5 MD, 2.4 APN, 2.4 SW, 1.0 BC Children's Hospital of Eastern Ontario/Roger's House, Ottawa 1999/2006† 170 2.0 MD, 1.0 APN, 1.0 RN, 0.8 SW Alberta Children's Hospital/Rotary Flames House, Calgary 2001/2009† 97 3.4 MD, 0.8 APN 0.8 SW, 0.8 BC Programs based at hospital Hospital for Sick Children, Toronto 1986 326 2.16 MD, 2.0 APN, 1.8 BC Centre hospitalier universitaire de Québec, Québec 2004 110 1.2 MD, 0.4 RN, 0.2 Psy Winnipeg Regional Health Authority, Winnipeg 2006 97 1.0 MD, 1.0 APN Centre hospitalier universitaire Sainte-Justine, Montréal 1999 67 0.5 MD, 2.0 APN, 0.8 Psy IWK Health Centre, Halifax 1995 60 1.5 MD, 1.0 APN, 0.5 RN Montréal Children's Hospital, Montréal 1992 57 0.9 MD, 0.5 APN Stollery Children's Hospital, Edmonton 1999 54 1.05 MD, 0.8 RN, 0.8 BC Children's Hospital London Health Sciences Centre, London, Ontario 2008 52 1.0 APN Royal University Hospital, Saskatoon 2011 51 0.3 MD Centre hospitalier universitaire de Sherbrooke, Sherbrooke, Quebec 2004 10 0.1 MD, 0.1 SW, 0.1 Psy Total - 1401 39.61 FTE Note: APN = advanced practice nurse, BC = bereavement coordinator, FTE = full-time equivalent, MD = physician, Psy = psychologist, RN = registered nurse, SW = social worker.
*Only "core staff" are listed. Additional staff (e.g., nurses, personal support workers) provide front-line care when children are admitted to the hospice.
†Hospital-based program started before the hospice; therefore, both dates are included.
- Table 2: Patient demographic and clinical characteristics, processes of care and outcomes of care at programs with hospices versus other programs
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.