Table 1. Patient Characteristics, End-of-Life Circumstances, and Staff Demographic Characteristics.
| Characteristic | No. (%) |
|---|---|
| Patients (n = 60) | |
| Age, median (IQR) | 4.9 mo (10 d to 7.5 y) |
| Sex | |
| Female | 31 (52) |
| Male | 29 (48) |
| Medical admission | 31 (52) |
| Cardiac diagnosis | |
| Single ventricle | 17 (28) |
| Cardiomyopathy | 10 (17) |
| LVOTO | 9 (15) |
| Cyanotic mixing | 8 (13) |
| Increased pulmonary blood flow | 7 (12) |
| RVOTO | 4 (7) |
| Othera | 5 (8) |
| Congenital comorbidity (genetic or noncardiac) | 16 (27) |
| Premature | 14 (23) |
| In the week prior to death | |
| Invasive procedure(s) | 25 (42) |
| ECMO and/or VAD | 27 (45) |
| Open chest | 16 (27) |
| Never or rarely aware | 43 (72) |
| Bedboundb | 41 (69) |
| Chest compressions | 14 (23) |
| No. of invasive procedures, ECMO or VAD, open chest, unaware, immobile, or chest compressions in week prior to death | |
| 0 | 5 (8) |
| 1 | 12 (20) |
| 2 | 8 (13) |
| 3 | 13 (22) |
| 4 | 12 (20) |
| 5 | 9 (15) |
| 6 | 1 (2) |
| Therapies on day of death | |
| Invasive ventilation | 55 (92) |
| ≥2 inotropes | 46 (77) |
| ≥2 sedatives | 38 (63) |
| Paralytics | 40 (67) |
| No. of invasive ventilation, ≥2 inotropes, ≥2 sedatives, or paralytics on day of death | |
| 0 | 2 (3) |
| 1 | 5 (8) |
| 2 | 11 (18) |
| 3 | 16 (27) |
| 4 | 26 (43) |
| Medical intensity on day of deathc | |
| Low | 27 (45) |
| High | 33 (55) |
| Mode of death | |
| Discontinuation of therapy | 39 (65) |
| Limitation to therapy | 10 (17) |
| Cardiopulmonary resuscitation | 8 (13) |
| Comfort care only | 2 (3) |
| Brain death | 1 (2) |
| Resuscitation order or advance care plan | 21 (35) |
| Pediatric palliative care involvement | 32 (53) |
| Staff (N = 713) | |
| Disciplined | |
| Medical practitioner | 208 (29) |
| CICU attending | 71 (10) |
| Nurse practitioner | 64 (9) |
| CICU fellow (cardiology, NICU, critical care trainees) | 61 (9) |
| Cardiac surgeon (attending/senior fellow) | 4 (1) |
| Cardiology attending | 3 (<1) |
| Other ICU attending | 5 (1) |
| Registered nurse | 246 (35) |
| Allied health staff | 259 (36) |
| Respiratory therapist | 138 (19) |
| Child life therapist | 50 (7) |
| Social work | 32 (4) |
| Chaplain | 18 (3) |
| Palliative care team | 4 (1) |
| Nutrition | 4 (1) |
| Interpreter | 3 (<1) |
| Music therapist or resource specialist | 4 (1) |
| Not recorded | 6 (2) |
| Pediatric critical care experience, ye | |
| <2 | 112 (16) |
| 2-5 | 186 (26) |
| 5-10 | 145 (20) |
| 10-15 | 95 (13) |
| >15 | 174 (24) |
Abbreviations: CICU, cardiac intensive care units; ECMO, extracorporeal membrane oxygenation; ICU, intensive care unit; LVOTO, left ventricle outflow tract obstruction; NICU, neonatal intensive care unit; RVOTO, right ventricle outflow tract obstruction; VAD, ventricular assist device.
Other included, eg, cardiac transplant.
Compared with patients who were able to be maintained in a chair or be held.
Low intensity indicates no therapies, inotropes without respiratory support, and noninvasive ventilation or invasive ventilation a maximum of 1 inotrope. High intensity indicates invasive ventilation with more than 1 inotrope, having an open chest, receiving ECMO, or receiving cardiopulmonary resuscitation.
Staff involved in more than 1 patient death could respond multiple times. Nurse practitioner included 62 CICU and 2 consult NPs.
One respondent did not answer.