Table 2. Survey Questions and Responses.
| Question | Median (IQR) | No. |
|---|---|---|
| PICU-QODD score questionsa | ||
| The child was free of pain | 8 (7-10) | 676 |
| The child was free of other troubling symptoms | 8 (5-10) | 666 |
| Clinical staff responded quickly to parents’ concern about their child’s symptoms | 10 (8-10) | 653 |
| Clinical staff gave parents information about their child in a way that they could understand | 10 (8-10) | 664 |
| Clinical staff prepared parents for what might happen to their child | 9 (8-10) | 666 |
| Clinical staff discovered and respected parents’ wishes and decisions | 10 (8-10) | 681 |
| Clinical staff created an atmosphere in which parents felt comfortable asking questions about their child | 10 (9-10) | 670 |
| Clinical staff offered parents opportunities to discuss options about their child’s care with the health care team | 10 (8-10) | 662 |
| There were no conflicts between parents and clinical staff about the best way to care for the child | 9 (7-10) | 646 |
| Clinical staff provided parents with privacy with their child near the end of their child’s lifeb | 10 (9-10) | 436 |
| Parents could easily meet their basic physical needs (accessible bathroom, showers, affordable meals, places to stay, parking, etc) | 9 (8-10) | 575 |
| Clinical staff demonstrated that they cared about the child as an individual | 10 (9-10) | 704 |
| Clinical staff supported the parents emotionally | 10 (9-10) | 689 |
| Clinical staff provided parents with opportunities to be near their child | 10 (9-10) | 691 |
| Clinical staff helped parents find ways to touch, hold, and/or connect with their child | 10 (9-10) | 680 |
| Hospital clergy and chaplains were availableb | 10 (10-10) | 315 |
| Staff discovered and respected the family’s spiritual and/or religious needs | 10 (9-10) | 552 |
| Staff did a good job of passing information about the child onto the next shift/rotation | 10 (9-10) | 635 |
| Clinical staff helped parents create memories (such as handprints, lockets of hair, photographs) of their childb | 10 (10-10) | 380 |
| Once the child died, his/her parents were allowed to stay with him/her for as long as they wantedb | 10 (10-10) | 306 |
| Standardized PICU-QODD scorea | 92.5 (84.4-96.9) | 637 |
| Additional questions relating to end-of-life circumstances | ||
| Was the mode-of-death aligned with the families wishes? No. (%) | ||
| Yes | 516 (72) | 713 |
| No | 61 (9) | 713 |
| Unsure | 136 (19) | 713 |
| Global rating question 1: how would you rate the quality of the patient's life during the last 7 days of his/her life?c | 5 (2-7) | 656 |
| Global rating question 2: how would you rate the quality of the patient's moment of death?b,c | 9 (7-10) | 281 |
Abbreviation: PICU-QODD, pediatric intensive care unit quality of dying and death.
a
Responses to these questions from the PICU-QODD were used to calculate the standardized score (range, 0 to 100) obtained by summing individual scores for each question, dividing by the number of questions answered, and multiplying by 10. Responses to more than 80% of the PICU-QODD instrument questions were required for standardized score calculation. Each item is scored on an 11-point Likert scale, with 0 indicating terrible and 10 indicating ideal or near perfect.
b
Could respond unsure if not present or not applicable.
c
Rated on a Likert scale (0-10), with higher scores indicating higher quality.