RESUMEN
BACKGROUND: Family caregivers make end-of-life (EOL) decisions for persons with severe dementia (PWSDs). It is not known whether the family caregivers' goals change over time. OBJECTIVE: Assess caregivers' EOL care goal for PWSDs and change in these goals over time. METHODS: Using a prospective cohort of 215 caregivers of PWSDs, we assessed the proportion of caregivers whose EOL care goal for PWSDs changed between two consecutive time points. Mixed effects multinomial regression models assessed factors associated with caregivers' EOL care goals for PWSD (maximal, moderate, minimal life extension); and change in EOL care goal from previous time point. RESULTS: At baseline, 20% of the caregivers had a goal of maximal life extension for their PWSD, and 59% changed their EOL care goal at least once over a period of 16 months. Caregivers of PWSDs with lower quality of life (RR: 1.15, CI: 1.06, 1.24), who expected shorter life expectancy for PWSDs (RR: 10.34, CI: 2.14, 49.99) and who had an advance care planning discussion (RR: 3.52, CI: 1.11, 11.18) were more likely to have a goal of minimal life extension for PWSD. Caregivers with higher anticipatory grief (RR: 0.96, CI: 0.93,1) were more likely to have a goal of maximal life extension. Change in PWSDs' quality of life and change in caregivers' anticipatory grief were associated with change in caregivers' EOL care goals. CONCLUSION: Caregivers' EOL care goals for PWSDs change over time with change in PWSD and caregiver related factors. Findings have implications regarding how health care providers can engage with caregivers.
Asunto(s)
Demencia , Cuidado Terminal , Humanos , Cuidadores , Objetivos , Calidad de Vida , Estudios Prospectivos , Demencia/terapiaRESUMEN
BACKGROUND: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. OBJECTIVE: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. DESIGN: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. SETTINGS/PARTICIPANTS: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. RESULTS: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family (p < .001), time with family and friends (p = .002), being at peace with God (p < .001), dying at home (p = .004), feeling that life was meaningful (p < .001), living as long as possible (p < .001), and resolving conflicts (p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. CONCLUSIONS: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.