Improving Understanding of Quality End of Life Care Using a Dyadic Approach - Project Summary/Abstract There is strong national consensus about the need to deliver high-quality care at the end of life (EOL) for patients with advanced (distant metastasis) cancer. Yet, despite the efforts of healthcare providers, many patients receive care that they do not want at EOL and leave their informal caregivers struggling with complicated grief months after their death. Research, to date, has tended to define quality EOL care using unidimensional factors that do not encompass key aspects of EOL care, such as patient and family-centered EOL care that holds individual preferences for EOL care at its core. Specifically, quality EOL care has been defined in terms of either: (a) amount of aggressive health care services received, or (b) whether it was “goal concordant care”---care that aligned with the patient’s preferences and goals for EOL care. These approaches have provided limited perspectives of what constitutes quality EOL care. Aggressiveness metrics (e.g., days of hospitalization, number of emergency department visits), for example, ignore the fact that some patients want aggressive care at EOL and goal concordant care metrics ignore the post-death QOL of caregivers. It is usually the patient-caregiver dyad who experience the trajectory of care, and who need support throughout. With patients continuing to receive EOL care that they do not want and caregivers struggling with poor post- death outcomes such as complicated grief, we need a new paradigm for conceptualizing quality EOL care. This project will be the first to apply the principles of a dyadic theory of illness to examine the relationships between patient-caregiver dyadic factors (e.g., dyadic incongruence for patient symptom severity) and dyadic quality EOL care. We have reconceptualized quality EOL care to be care that benefits both members of the dyad and is present when the patient identifies the receipt of goal concordant care at EOL and the caregiver does not demonstrate complicated grief 3 months post-death. This longitudinal, descriptive, correlational study will address the following aims: Aim 1: Examine the influence of dyadic appraisal of illness factors upon dyadic quality EOL care (present or absent); Aim 2: Examine the influence of risk-protective contextual factors (individual, dyadic, family/social) on dyadic appraisal of illness factors (symptoms, EOL treatment preferences, EOL values) over time; and Aim 3: Assess the extent to which dyadic appraisal of illness factors mediate the relationship between risk-protective contextual factors and dyadic quality EOL care. Identifying specific dyadic variables (such as symptom severity incongruence) that relate to dyadic outcomes can facilitate the development of dyadic interventions aimed at enhancing communication or knowledge, for example, for both members of the dyad over time. By enhancing dyadic outcomes, we will have better stewardship of healthcare resources for patients at EOL and ensure improved quality EOL care for patients and improved post-death outcomes for caregivers---those who must carry on after the patient’s death.
