Perceptions of Clients and their Informal Caregivers Regarding Fear of Death and Dying in Home Care - A Multicenter Cross Sectional Study

Introduction: Death and dying are very personal and sensitive topics. Many people are concerned that for example pain or loneliness in connection with serious illness could burden the dying process and threaten their dignity. Fear or anxiety in relation to death and dying has been examined in different patient groups and types of health care providers. However, since data about the subject in home care patients and their informal caregivers is rare, the aim of the study is to analyze fears related to death and dying in this vulnerable population. Material and Methods: A cross-sectional study in home care services throughout Germany was conducted. A total of 656 questionnaires could be used for analysis from clients and 499 from informal caregivers. 5 items were used to generate an Index of Death-related Fear (Cronbachs-α=0.8). The influence of age, gender and level of care dependency on the Index of Death-Related Fear was analyzed in a linear multiple regression. Results: Clients “very much” (“rather yes”) feared the “loss of personal dignity” with 25.5% (18.6%) and “physical suffering” 26.7% (21.5%). The standardized β for level of care dependency was 0.129 (95 CI 0.0140.164) and 0.138 (95 CI 0.069 0.583) for gender (female) on the Index of Death-Related Fear. Conclusion: Fear regarding death and dying among individuals receiving home care is high, especially concerning the loss of personal dignity and physical suffering. Half of the clients do not speak about the subject. Health care professionals working in community care should offer clients to talk about death and dying.