The developmental transition from living with to dying from cancer: Hospice decision making

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.