title: The Developmental Transition From Living With to Dying From Cancer: Hospice Decision Making.
abstract: Despite increasing utilization of hospice care, older adults with cancer enroll in hospice for shorter periods of time than those with other life-limiting illnesses. How older adults with cancer and their family members consider hospice is unknown. The purpose of this study was to compare decision making in late-stage cancer in people who enrolled in hospice with those who declined. Concepts from the Carroll and Johnson (1990) decision-making framework guided the development of a hospice decision-making model. The study design was exploratory-descriptive, cross-sectional, and used a two-group comparison. Qualitative and quantitative data were collected in the same interview. Open-ended questions were used to explore the illness trajectory and decision-making process. The interrelationships between functional ability, quality of life, and social support with hospice decision making were assessed using the Katz, QLQ-30, and Lubben Social Network Scales. Study participants included 42 older adults with cancer who had been offered hospice enrollment (24 non-hospice and 18 hospice) and 38 caregivers (15 non-hospice and 23 hospice); N = 80. The decisional model illustrates that the recognition of advanced cancer and information and communication needs were experienced similarly by both groups. There was interaction between the decisional stages: formulation of awareness and generation of alternatives that informed the evaluation of hospice but these stages were different in the hospice and non-hospice groups. The hospice enrollment decision represents a critical developmental juncture, which is accompanied by a transformed identity and substantive cognitive shift. Increased attention to the psychosocial and emotional issues that accompany this transition are important for quality end-of-life care.
authors.affiliation: a School of Social Work , University at Buffalo , Buffalo , NY , USA.
authors.forename: Deborah
authors.initials: D
authors.lastname: Waldrop
authors.affiliation: b School of Nursing , University at Buffalo , Buffalo , NY , USA.
authors.forename: Mary Ann
authors.initials: MA
authors.lastname: Meeker
authors.affiliation: c Division of General Internal Medicine , University of Colorado School of Medicine , Aurora , CO , USA.
authors.forename: Jean S
authors.initials: JS
authors.lastname: Kutner
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D003430:Cross-Sectional Studies; D003657:Decision Making; D017051:Hospice Care / Q000706:statistics & numerical data*; D006801:Humans; D008875:Middle Aged; D008960:Models, Psychological; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D036301:Qualitative Research; D013727:Terminal Care / Q000523:psychology*
keywords: end-of-life transitions, hospice decision model, identity transformation