Understanding Family Responses to Life-Limiting Illness: In-depth Interviews with Hospice Patients and Their Family Members

Abstract

Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their patterns of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.