title: End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers.
abstract: This study examined the end-of-life challenges, concerns, and care preferences of terminally ill elders and their family caregivers, with a focus on areas of congruence and incongruence. Ten elders and 10 family caregivers participated in separate, semi-structured, face-to-face interviews. Data analysis included team coding and thematic analysis, guided by an a priori set of categories based on the study questions. Shared challenges and concerns included experiencing decline, managing pain and discomfort, and living with uncertainty. There was also congruence regarding end-of-life care preferences, specifically the importance of quality care, treatment with dignity and respect, and avoiding unnecessary life-sustaining treatment. Areas of incongruence included the elders' difficulties in accepting dependence, their fears of becoming a burden, and desire to be prepared for death. Family caregivers were most concerned with providing adequate care to meet the elders' physical and spiritual care needs. Open family communication was associated with greater congruence. The authors discuss implications of these findings for research and intervention.
authors.affiliation: New York University, Silver School of Social Work, New York, NY 10003, USA. dsg7@nyu.edu
authors.forename: Daniel S
authors.initials: DS
authors.lastname: Gardner
authors.forename: Betty J
authors.initials: BJ
authors.lastname: Kramer
mesh_terms: D016223:Advance Directives / Q000523:psychology*; D000368:Aged; D000369:Aged, 80 and over; D000739:Anecdotes as Topic; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*