End-of-Life Decision Making and Communication of Bereaved Family Members of African Americans with Serious Illness

Abstract

Objective: The study objective was to examine factors that influence African American (AA) family members' end-of-life care decision outcomes for a relative who recently died from serious illness. Methods: A cross-sectional descriptive study design was used. Binary logistic and linear regressions were used to identify factors associated with decision regret and decisional conflict. Forty-nine bereaved AA family members of AA decedents with serious illness who died two to six months prior to enrollment were recruited from the palliative care program in a safety net hospital and a metropolitan church in the Midwest. Measurements used were the Decisional Conflict, Decision Regret, Beliefs and Values, and Quality of Communication scales. Results: Family members who reported higher quality of communication with health care providers had lower decisional conflict. Family members of decedents who received comfort-focused care (CFC) had significantly less decision regret than family members of those who received life-prolonging treatment (LPT). Family members who reported stronger beliefs and values had higher quality of communication with providers and lower decisional conflict. Conclusions: This research adds to a small body of literature on correlates of end-of-life decision outcomes among AAs. Although AAs' preference for aggressive end-of-life care is well-documented, we found that receipt of CFC was associated with less decision regret. To reduce decisional conflict and decision regret at the end of life, future studies should identify strategies to improve family member-provider communication, while considering relevant family member and decedent characteristics.

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

“…In concordance with the health care literature, EOL decisions made by caregivers were not autonomous (i.e., independent acts) but instead family-centered and involved communication with health care providers as a resource. These findings are consistent with those of other recently published literature (Sanders, Robinson, & Block, 2016; Smith-Howell, Hickman, Meghani, Perkins, & Rawl, 2016), and serve as a reminder for health care providers to focus on the specific needs of the individual and family when using EOL terminology. Moreover, heavy reliance is placed on health care providers' (mainly nurses and physicians) input regarding EOL decision making, emphasizing the need for health care providers to be sensitive to the needs of individuals and families within cultural contexts.…”

Assessing decision regret in caregivers of deceased German people with cancer—A psychometric validation of the Decision Regret Scale for Caregivers

“…To the best of our knowledge, there is only one previous study on decision regret in bereaved family members that used the Decision Regret Scale . The study by Smith‐Howell et al reported a lower mean decision regret score (M = 22.2, SD = 17.8) compared with the one we observed.…”

“…For the most part, decisions in palliative care are based on the needs of patients and caregivers so that regret might generally be lower in this particular context . At any rate, Smith‐Howell et al did not report whether they had validated their measure in a caregiver sample in advance . This study was published after we had completed our data collection, so that we could not account for it when pre‐testing the DRS‐C.…”

“…Indeed, one study demonstrated that caregivers experiencing decision regret have a lower health‐related quality of life . Furthermore, there is some recent evidence that decisional conflict in family members is negatively linked to their quality of end of life communication . However, research on decision regret in caregivers is scarce since an equally practical and psychometrically robust instrument for its assessment is lacking .…”

Minority Patients are Less Likely to Undergo Withdrawal of Care After Spontaneous Intracerebral Hemorrhage

“…26 Outreach programs to minority communities can help dispel misconceptions about palliative care and reduce decisional conflict for patient surrogates. 27 …”