Respecting Faith, Hope, and Miracles in African American Christian Patients at End-of-Life: Moving from Labeling Goals of Care as "Aggressive" to Providing Equitable Goal-Concordant Care.

In this article, we demonstrate first how the term "aggressive care," used loosely by clinicians to denote care that can negatively impact quality of life in serious illness, is often used to inappropriately label the preferences of African American patients, and discounts, discredits, and dismisses the deeply held beliefs of African American Christians. This form of biased communication results in a higher proportion of African Americans than whites receiving care that is non-goal-concordant and contributes to the prevailing lack of trust the African American community has in our healthcare system. Second, we invite clinicians and health care centers to make the perspectives of socially marginalized groups (in this case, African American Christians) the central axis around which we find solutions to this problem. Based on this, we provide insight and understanding to clinicians caring for seriously ill African American Christian patients by sharing their beliefs, origins, and substantive importance to the African American Christian community. Third, we provide recommendations to clinicians and healthcare systems that will result in African Americans, regardless of religious affiliation, receiving equitable levels of goal-concordant care if implemented. KEY MESSAGE: Labeling care at end-of-life as "aggressive" discounts the deeply held beliefs of African American Christians. By focusing on the perspectives of this group clinicians will understand the importance of respecting their religious values. The focus on providing equitable goal-concordant care is the goal.

Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors.

Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent. Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors. Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support. Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%). Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.

Factors Associated with Family Caregivers' Confidence in Future Surrogate Decision Making for Persons with Cancer.

Background: Improving family caregiver preparation for surrogate decision making is a critical priority. Objective: Determine a parsimonious set of intrapersonal factors associated with family caregivers' confidence in making future medical decisions for their relatives with cancer. Methods: Cross-sectional mail survey. Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers from communities of eight U.S. cancer centers. Participants completed validated measures of their social and mental health, self-care behaviors, coping styles, and surrogate decision-making confidence. Using linear modeling, the Bayesian information criterion was used to identify factors associated with decision-making confidence. A bootstrap approach was used to conduct penalized inference on the selected model coefficients. Model fit validation was assessed with a random forest ensemble. Results: Caregivers (n = 294) were on average 65.5 years old, mostly female (72.8%), and care recipients' spouse/partner (60.2%). The parsimonious set of factors associated with low caregiver decision-making confidence included less engagement in spiritual growth self-care, more use of avoidant coping, low emotional social support, and younger care recipient age (in-sample R2 = 0.22). These factors were also identified by a random forest approach. After overfitting adjustment (shrunken R2 = 0.09), the strongest associations with low surrogate decision-making confidence were low spiritual growth self-care (adjusted standardized B = 0.17, p = 0.005) and high use of avoidant coping (adjusted standardized B = -0.12, p = 0.049). Discussion: Identifying strategies to enhance spiritual growth and reduce avoidant coping may be promising targets for interventions to improve family caregivers' confidence in future surrogate decision making.