Equity and Access to Palliative Care for Mexican American Families

Purposes/Aims. The National Quality Forum and National Institute of Nursing Research both identify palliative care as a national priority, defining it as patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care should be culturally-responsive, begin with the diagnosis of life-limiting illness (LLI), and continue throughout the caregiving trajectory. This presentation (1) describes the point where 110 Mexican American (MA) caregiving families in our mixed methods study, Momento Crucial, recognized the beginning of caregiving for older parents and (2) posits it as an opportunity to initiate family decision-making and support through palliative care.

Rationale/Conceptual Basis/Background. MAs remain the largest ethnic minority in the U.S. and many older persons require ongoing family caregiving, about which little is known. Even less is known about their experiences with palliative care; few complete advanced directives but many do discuss such concerns with family. Momento used life course perspective to examine longitudinally cultural and contextual differences, timing of life events, adaptive strategies, transitions, and turning points in the caregiver trajectory. During this process, we uncovered a major turning point, called the “point of reckoning” by Clark & Huttlinger (1998), where caregivers’ lives were changed forever with their recognition and acceptance of the caregiving role.

Methods.  Case-oriented, qualitatively driven methods (Miles, Huberman &Saldana, 2014) facilitated exploration of the 110 families, who varied in acculturation, socioeconomic status, and education. We queried our ATLAS.ti data base for previously coded “reckoning points” across 6 visits comprised of semi-structured interviews and conducted every 10 weeks for 15 months. To assist in drawing inferences, we examined each case individually, entered them into matrices for comparison, scrutinized the matrices for themes and patterns of similarity/dissimilarity, and distinguished categories called “pathways”. 

Results/Findings. In Momento, the “reckoning point” formally marked the beginning of the caregiving trajectory, occurring in all but one of the 110 caregiving families. The descent into caregiving was gradual for only 9 families, but even those caregivers were able to report recognition of a time when caregiving duties became so demanding that their lives changed from that point forward. Caregivers came to the “point of reckoning” along five “pathways” (family dynamics, kinship obligations, spiritual connections, physical or mental health realities, and socioeconomic considerations) which often converged to create the undeniable need for caregiving.

Implications. Despite the call-to-action from the National Quality Forum and the National Institute of Nursing Research to improve culturally-responsive palliative care for LLI, few interventions address the needs of Hispanic/Latinos, and even fewer address MAs, in particular. Upstream palliative care, including family decision-making about the future, initiated when the “reckoning point” is reached, could improve MA caregivers’ quality of life, mood, well-being, and satisfaction with care, as well as health resource utilization. Ideally, nurses could identify families proceeding down the five “pathways” to the “reckoning point” and be poised to initiate culturally-responsive palliative care, facilitate family decision making, and engage other family members in multidimensional support of caregiver and care recipient needs across the caregiving trajectory.