The aims of the proposed study are to determine the extent to which: (a) objective death circumstances (e.g., use of ventilators, feeding tubes), (b) subjective death circumstances (eg, emotional, physical, spiritual distress, pain; concern, respect shown patients), and (c) goal attainment (ie, receipt of care consistent with patient treatment preferences), differ based on the patient's ethnic status (ie, Black, White, Hispanic). We hypothesize that modifiable psychosocial factors (e.g., trust, self-efficacy, communication, preferences, mental health, coping styles) will influence the patient's quality of death and account for ethnic differences in end-of-life (EOL) care. The proposed study is a 4- year longitudinal study of 800 terminally ill cancer patient-caregiver dyads that builds on ongoing research being conducted as part of a multi-site NIMH R01 (MH63892) """"""""Psychiatric Disorders in Dying Patients & Their Survivors"""""""" (PI: Prigerson). MH63892 enrolls terminally ill cancer patients and caregivers (eg, spouses) from cancer centers at Yale and the VA CT Healthcare System in CT, and Memorial Sloan-Kettering in NY. Additional Black and Hispanic patients will come from new sites at the University of Texas Southwestern Parkland Hospital Palliative Care Clinic and Simmons Cancer Center. Patients with a life expectancy of < 6 months and their primary caregiver receive a baseline assessment. A postmortem assessment, using information obtained from medical charts and the nurse who last cared for the patient, is conducted 1-week post-loss. Surviving caregivers are interviewed 6 months post-loss. Results will fill large gaps in knowledge about: 1) ethnic differences in the quality of death of cancer patients, and 2) the role of modifiable psychosocial factors likely to account for ethnic differences in the patient's quality of death. This will be the first study to relate subjective quality of death outcomes across ethnically diverse patient samples to objective quality of death indicators (e.g., care received) and, thereby, determine the way the care provided to the patient influences his/her quality of life at the EOL. If Blacks die in more physical and psychological distress relative to Whites, and this proves a function of more aggressive care (e.g., feeding tube, ventilator use), this would highlight the need to modify psychosocial factors mediating the relationship between ethnicity and the receipt of more aggressive care (e.g., poor communication, mistrust). In these ways, results would not only yield useful information that clinicians could then apply toward enhancing their sensitivity to culturally-specific needs and wishes, but also inform interventions to improve the quality of life and care received by dying Black, White, and Hispanic patients.
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