Trajectories of Palliative Care Needs in the ICU and Long-Term Psychological Distress Symptoms

Abstract

Objectives: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months.

Design: Prospective cohort study.

Setting: Six adult medical and surgical ICUs.

Participants: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members.

Measurements and main results: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15).

Conclusions: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice.

Figure 1:. Trajectories of family members’ severity of overall needs during ICU care

Participants’ need severity category as defined by NEST scores (high: NEST ≥30, moderate NEST 10-29, low: NEST 1-9, none: NEST 0) are shown across the time span of the study. The height of boxes is proportional to the percentage in each category; the number (percent) of participants is shown at T1 (baseline), T2 (3 days), and T3 (1 week). Lines between boxes demonstrate the number of participants who either remain in the same need category or transition to another severity category; the width of the line is proportional to the number (also shown to the left of each severity grouping) entering a category at each time point. For example, of the 57 who had high needs at baseline, 41 had persistently high needs at 3 days and 35 had persistently high needs at 1 week. The number (%) worsened, improved, or unchanged in need severity category between baseline and day 7 is shown to the far right of the figure.

Figure 2:. Serious individual palliative care needs reported during ICU care

The percentage of family members with a NEST item score ≥5 is shown for each 13 of the NEST’s items across the time span of the study at baseline, day 3, and day 7 day. An asterisk denotes the two items that increased in prevalence between baseline and day 3.

Figure 3:. Serious total palliative care needs versus less serious needs during ICU care

The number (%) of family members reporting serious needs (NEST total score ≥30) and needs that were less serious (NEST total score <30) at baseline, 3 days, and 7 days are shown. Median (interquartile range) NEST total scores are also shown for each group. At 7 days, the 53 still reporting serious needs had a median NEST total score of 43.0 (37.0, 59.0). The 106 with less serious needs had a median NEST total score of 12.5 (6.0, 19.0).