Readiness for the end of Life: Importance of Death Anxiety, Assessment and Interventions in Cancer Care

In psychological research, death anxiety is discussed as a potential restrictive factor on psychological well-being often experienced by cancer patients. One important consequence of death anxiety is engagement in maladaptive health behavior to avoid thoughts and emotional distress regarding the end of life. This dissertation project focused on the relevance of death anxiety in addition to the development of assessments and interventions to overcome personal and organizational barriers and facilitate engagement in adaptive health behavior. At first, the structural relationship between death anxiety and fear of cancer recurrence or progression was psychometrically analyzed to interpret relevance of death anxiety for cancer patients (Study I). For a predominantly female sample (N = 121), death anxiety explained the majority of shared variance to fear of cancer recurrence or progression and could therefore be interpreted as the general factor. The general impact of death anxiety emphasizes the need to address maladaptive health behavior due to death distress. As such, avoidance of end-of-life (EOL) conversations due to death anxiety can result in overtreatment and superfluous intensive care in addition to psychological distress for patients as well as family members. Identification of patients in need of EOL conversations (e.g., advance care planning) can be facilitated by screening for distressed patients and patients who wish to engage. Therefore, a feasible screening tool for uncomplicated assessment in a hospital setting was developed (N = 92) and cut-off criteria evaluated (N = 201) in a mixed sample of cancer patients (Study II). External interpretation of need was based on death anxiety distress and combined with subjective expression of need. The screening instrument represents the first tool with excellent sensitivity and good specificity in a hospital setting. When assessing need for advance care planning, subjective expression was unrelated to external assessment and highlighted the need to acknowledge personal readiness for EOL conversations. In two successive studies (Study III), we designed and validated a questionnaire that could further be used to assess readiness for EOL conversations, not only in a community setting (N = 349) but also in a sample of cancer patients (N = 84). Factor structure and psychometric properties for cancer patients (N = 295) were also supported in a hospital setting (Study IV). After successful development of a measurement tool for EOL conversations, the effect of two interventions on readiness for EOL conversations was explored in a randomized controlled trial (Study V). The first achievement was successful adaptation of both interventions to an online setting to facilitate future application and accessibility. Also, both interventions (N = 118) succeeded in increasing readiness for EOL conversations. Secondary analyses also provided first insights into intervention effects on death anxiety, fear of cancer recurrence or progression, and gratitude. Long-term benefits are indicated and discussed in terms of practical applications as well as potential avenues for future research. Overall, the study results emphasize a) the general role of death anxiety for cancer patients; b) the possibility to assess need for advance care planning in hospital settings, if death-related distress and subjective desire or readiness for conversations are combined; c) the possibility to assess readiness for EOL conversations in a community setting and for cancer patients; and d) the modifiability of readiness in cancer patients with two online interventions that also impact the experiences of death anxiety, fear of cancer recurrence or progression, and gratitude. This dissertation project not only emphasizes the importance of death anxiety in cancer care; it also highlights the need to address readiness for health behavior and provides first solutions to facilitate engagement.