Daily coping with a shortened life expectancy: Development of a daily diary measure for loss and restoration orientation in terminally ill patients with cancer
Public Health, Healthcare Research, Social and Occupational Medicine
Final Report Abstract
The diagnosis of advanced cancer challenges individuals to live with a foreshortened life expectancy. Although at times individuals may feel a sense of preparedness and peace, they still often struggle to enjoy the time that remains while mourning what they have lost or will lose. How patients balance meaningful life engagement against a preoccupation with loss and death may be central to adaptation in this setting of advanced disease. This research fellowship conceptualized a model of the dynamic interplay of loss orientation and life engagement in daily life and developed a measure to assess such fluctuations. We first examined the conceptual structure of loss orientation and life engagement through two empirical studies. We conducted a network analysis of death-related concerns in a sample of 382 patients with advanced cancer and found that dealing with the loss of time was a central concern, meaning that orientation toward a foreshortened future conceptually linked the other death-related losses. Further, a pilot daily diary study over 7 days with 17 advanced cancer patients indicated strategies that helped individuals to shift the focus of orientation. Such efforts included hoping for positive events, distraction, and practically and emotionally preparing for the end of life through advance care planning, saying goodbye or leaving something behind to be remembered. We then integrated these findings with the theories of Folkman (2010, 1997) and Stroebe (1999). The resulting model describes the psychological mechanisms by which tension between loss orientation and life engagement may be regulated and shifts of these states toward both directions are activated. We used this model to develop a revised measure of loss orientation, life engagement, and regulation efforts. The pilot study further showed that the diary assessment approach was acceptable and feasible in the advanced cancer setting, and indicated substantial intraindividual variability in loss and life orientation over time. Intensive longitudinal studies may now test the model and further examine the predicted within-person adaptation processes. We also found distinct intraindividual patterns of co-fluctuation between loss orientation and life engagement. Subsequent research may study the extent to which such adaptation patterns predict patients’ individual needs for reality and hope in clinical conversations at the end of life. Understanding such needs may be of value for interventions that facilitate adaptation and support individuals to prepare for death while making the most of the time left.
Publications
- (2018) The daily dynamics of loss orientation and life engagement in advanced cancer: A pilot study to characterise patterns of adaptation at the end of life. European journal of cancer care 27 (4) e12842
Vehling, S.; Gerstorf, D.; Schulz-Kindermann, F.; Oechsle, K.; Philipp, R.; Scheffold, K.; Härter, M.; Mehnert, A.; Lo, C.
(See online at https://doi.org/10.1111/ecc.12842) - (2017). A concept map of death-related anxieties in patients with advanced cancer. BMJ Supportive & Palliative Care
Vehling, S., Malfitano, C., Shnall, J., Watt, S., Panday, T., Chiu, A.,. . . Lo, C.
(See online at https://doi.org/10.1136/bmjspcare-2016-001287)
