Table 3:
Results of After Death Bereaved Family Member Interview Domains and Questions
| Domain Name and Associated Patient-Centered Questions | Problem Score (95% CI) | Respondents Answering “No”, No. (%) | Change in IES-R Score Associated with a “No” Response (95% CI) | P value |
|---|---|---|---|---|
| Patient physical comfort and emotional supporta | 0.13 (0.11 to 0.15) | 1.74 (0.82 to 2.65) | 0.0003 | |
| Did the doctor or the medial staff explain how patient’s pain would be treated? | 20 (7%) | 12.1 (4.9 to 19.3) | 0.001 | |
| Was there ever a time when different clinicians said different things about treatment of pain? | 223 (82%) | −7 (−11.3 to −2.7) | 0.002 | |
| Inform and promote shared decision-makinga | 0.17 (0.14 to 0.2) | 0.8(0 to 1.59) | 0.05 | |
| Did you ever have trouble understanding what any doctor said about what to expect from treatment? | 224 (77%) | 1 (−3.7 to 5.6) | 0.67 | |
| Did you feel that doctors listened to your concerns about medical treatment?b | 23 (8%) | 10.7 (3.6 to 17.9) | 0.009 | |
| Was there ever a decision made about patient without input from family? | 257 (85%) | 2 (−7.3 to 3.3) | 0.46 | |
| Focus on individuala | 0.2 (0.17 to 0.23) | 0.71 (−0.11 to 1.53) | 0.09 | |
| Was there enough help available to meet the patient’s care needs? (bathing, dressing, bed change) | 19 (6%) | −0.5 (−9 to 7.9) | 0.91 | |
| Was there enough help with medications and getting dressings changed? | 15 (5%) | 1.1 (−8.5 to 10.8) | 0.82 | |
| Family emotional and spiritual supporta | 0.21 (0.19 to 0.23) | 0.68 (−0.26 to 1.62) | 0.16 | |
| Did you have enough religious contact as you might have wanted while in the hospital? | 10 (5%) | 11.7 (2 to 21.3) | 0.02 | |
| Did a doctor, nurse or staff suggest someone you could turn to for help if you were stressed? | 122 (41%) | 2.2 (−1.7 to 6.1) | 0.26 | |
| Did someone talk to you about your religious beliefs? | 112 (37%) | 2.2 (−1.8 to 6.3) | 0.27 | |
| Encourage advance care planninga | 0.15 (0.12 to 0.19) | 0.75 (0.12 to 1.39) | 0.02 | |
| Were medical procedures and treatments consistent with patient wishes? | 28 (10%) | 6.5 (0 to 12.9) | 0.05 | |
| Did the patient’s doctor speak to you about wishes for patient’s medical treatment? | 53 (18%) | 5.1 (0 to 10.1) | 0.05 | |
| Did the patient’s doctor speak to you about making sure care was consistent with patient wishes? | 47 (16%) | 4.8 (0.4 to 10) | 0.07 | |
| Overall rating scale for patient focused, family centered carec | 8.82 (8.65 to 9.0) | 2.2 (0.9 to 3.5) | 0.001 |
Associations for problem scores and individual questions were adjusted for baseline family member Hospital Anxiety and Depression Score (p= < 0.0001), patient level of responsiveness at enrollment (p= 0.0066), study site (p= 0.217) and clinical trial intervention (p= 0.0495), duration of mechanical ventilation (p= 0.115), and patient death by the time of 90 day follow up (p= 0.0002).
Each domain contains three to eight questions, with a problem score for each calculated using the sum of negative responses to individual questions within the domain divided by the number of items within the domain. The problem score ranges from 0 to 1.0, with a higher score representing more concerns with the quality of care. For example, in the domain “Patient physical comfort and emotional support”, each 0.1 in the level of surrogate concern was associated with an increase of 1.74 (95% CI 0.82 to 2.65) in IES-R score. The IES-R score is on a 0 to 88 scale with higher scores representing more PTSD symptoms.
Question also contained a “no concerns” option, coefficient 20.7 (95% CI 1.4 to 39.9)
The overall rating scale contains five individual questions rating overall patient-focused and family centered care on a scale from 0 (worst) to 10 (best). The overall scale score is calculated as an average of the responses to the individual questions. A higher score represents fewer concerns with the quality of care. For example, a decrease of 1 unit on the overall scale score is associated with a 2.2 (95% CI 0.9 to 3.5) increase in the IES-R score.