Patterns of care at the EOL
| . | SCT (n = 31) . | Non-SCT (n = 110) . | Difference, percentage (95% CI) . | P . |
|---|---|---|---|---|
| Hospitalized > 20 days in last month of life, n (%) | 21/26 (68) | 21/109 (19) | 49 (28, 69) | < .001 |
| Intubated in last 24 hours of life, n (%) | 19 (63) | 8 (7) | 56 (34, 74) | < .001 |
| Location of death | ||||
| Family planned location, n (%) | 9 (29) | 79/109 (72) | −43 (−64, −23) | < .001* |
| Location | ||||
| Home, n (%) | 5 (16) | 62 (56) | −40 (−58, −22) | < .001† |
| ICU, n (%) | 16 (51) | 9 (8) | 43 (23, 64) | < .001† |
| Hospice | ||||
| Discussed, n (%) | 5 (16) | 69 (63) | −47 (−64, −29) | < .001 |
| Hospice involved, n (%) | 8/20 (27) | 81/108 (75) | −48 (−68, −28) | < .001 |
| Resuscitation status | ||||
| Discussion documented in chart, n (%) | 23 (74) | 87 (79) | −5 (−24, 14) | .625 |
| Median time (d) from discussion to death (IQR) | 4.5 (1-8.5) | 17 (6-38) | −12.5 (−19, −6) | .001 |
| DNR order implemented, n (%) | 16 (52) | 81 (74) | −22 (−44, −1) | .028 |
| Medain time (d) from DNR order to death (IQR) | 2 (1-10) | 20 (9-56) | −18 (−26, −10) | < .001 |
| Withholding life-sustaining treatment | ||||
| Discussed, n (%) | 4 (13) | 35/109 (32) | −19 (−36, −2) | .041* |
| Treatment withheld, n (%) | 2 (6) | 13/108 (12) | −6 (−18, 7) | .122* |
| Withdrawal of life sustaining treatment | ||||
| Discussed, n (%) | 15/30 (50) | 21/108 (19) | 31 (9, 52) | .001* |
| Treatment withdrawn, n (%) | 14 (45) | 13/108 (12) | 33 (12, 54) | < .001* |
| Autopsy | ||||
| Discussed, n (%) | 25 (81) | 56 (51) | 30 (11, 49) | .004‡ |
| Performed, n (%) | 15 (48) | 22/108 (20) | 28 (7, 49) | .005‡ |
| . | SCT (n = 31) . | Non-SCT (n = 110) . | Difference, percentage (95% CI) . | P . |
|---|---|---|---|---|
| Hospitalized > 20 days in last month of life, n (%) | 21/26 (68) | 21/109 (19) | 49 (28, 69) | < .001 |
| Intubated in last 24 hours of life, n (%) | 19 (63) | 8 (7) | 56 (34, 74) | < .001 |
| Location of death | ||||
| Family planned location, n (%) | 9 (29) | 79/109 (72) | −43 (−64, −23) | < .001* |
| Location | ||||
| Home, n (%) | 5 (16) | 62 (56) | −40 (−58, −22) | < .001† |
| ICU, n (%) | 16 (51) | 9 (8) | 43 (23, 64) | < .001† |
| Hospice | ||||
| Discussed, n (%) | 5 (16) | 69 (63) | −47 (−64, −29) | < .001 |
| Hospice involved, n (%) | 8/20 (27) | 81/108 (75) | −48 (−68, −28) | < .001 |
| Resuscitation status | ||||
| Discussion documented in chart, n (%) | 23 (74) | 87 (79) | −5 (−24, 14) | .625 |
| Median time (d) from discussion to death (IQR) | 4.5 (1-8.5) | 17 (6-38) | −12.5 (−19, −6) | .001 |
| DNR order implemented, n (%) | 16 (52) | 81 (74) | −22 (−44, −1) | .028 |
| Medain time (d) from DNR order to death (IQR) | 2 (1-10) | 20 (9-56) | −18 (−26, −10) | < .001 |
| Withholding life-sustaining treatment | ||||
| Discussed, n (%) | 4 (13) | 35/109 (32) | −19 (−36, −2) | .041* |
| Treatment withheld, n (%) | 2 (6) | 13/108 (12) | −6 (−18, 7) | .122* |
| Withdrawal of life sustaining treatment | ||||
| Discussed, n (%) | 15/30 (50) | 21/108 (19) | 31 (9, 52) | .001* |
| Treatment withdrawn, n (%) | 14 (45) | 13/108 (12) | 33 (12, 54) | < .001* |
| Autopsy | ||||
| Discussed, n (%) | 25 (81) | 56 (51) | 30 (11, 49) | .004‡ |
| Performed, n (%) | 15 (48) | 22/108 (20) | 28 (7, 49) | .005‡ |
Crude (unadjusted) results are presented. Denominators are indicated when different from total sample size. Differences correspond to absolute risk differences (for proportions) or differences in medians.
EOL indicates end-of-life; SCT, stem cell transplantation; CI, confidence interval; ICU, intensive care unit; IQR, interquartile range; and DNR, do not resuscitate.
Adjustment for time since death was performed for these outcomes, which were parent-reported. There was no change in P value significance after adjustment.
P value corresponds to comparison of deaths in home or ICU versus all other locations.
Adjustment for time since death and location of death was performed for autopsy outcomes. For “autopsy discussed,” adjusted P = .08. For “autopsy performed,” adjusted P = .02.