Poor Concordance Between Intensive Care Unit Patients' and Family Members' Patient Dignity Inventory Scores Despite Communication of Dignity-Related Distress.

Background: Promptly assessing and treating the distress of intensive care unit (ICU) patients may improve long-term psychological outcomes. One holistic approach to reduce patient distress is through dignity-centered care, traditionally used in palliative care. The 25-item Patient Dignity Inventory has construct validity and reliability for measuring dignity-related distress among ICU patients. Because family members often serve as ICU patients' surrogates and play an integral role in patients' dignity, we examined whether family members reliably recognized ICU patients' sources of distress.

Methods: Two single-center observational studies of adult ICU patients were performed from May to June 2022. Inclusion criteria were ICU length-of-stay >48 hours, awake and alert, intact cognition, and no delirium. Study #1 evaluated concordance between patient and family for dignity-related distress. Both completed the Patient Dignity Inventory independently. The next Study #2 measured how many distressing items that the patient reported discussing with family members.

Results: Study #1 of concordance had 33 patient-family dyads complete the Patient Dignity Inventory. The concordance correlation coefficient was small, 0.20 (99% confidence interval -0.21 to 0.55) and less than the inventory's test-retest reliability (r = .85). Study #2 examined sharing of Patient Dignity Inventory-related items between patients and family members. There were 12 of 19 patients who had severe distress based on an average Patient Dignity Inventory item score ≥1.92. The median patient shared multiple items of distress with their family (median 12, 99% 2-sided exact Hodges-Lehmann interval 4.0-17.5).

Conclusions: Although ICU patients often report sharing sources of distress with their loved ones, family members cannot accurately or reliably assess the extent to which patients experience psychosocial, existential, and symptom-related distress during critical illness. Treatments of distress should not be delayed by the absence of family members.