Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

Kimberley Widger; Dawn Davies; Adam Rapoport; Christina Vadeboncoeur; Stephen Liben; Amrita Sarpal; Simone Stenekes; Claude Cyr; Lysanne Daoust; Marie-Claude Grégoire; Marli Robertson; Heather Hodgson-Viden; Julie Laflamme; Harold Siden

doi:10.9778/cmajo.20160054

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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.

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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
Variable	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
Variable	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.