Abstract

Individual adaptation at the end of life may be characterised by how patients fluctuate in their orientation towards losses and death or engagement in meaningful activities in daily life. To describe these intraindividual patterns of change, we conducted a daily diary study over 7days with 17 advanced cancer patients from in- and outpatient oncology and psycho-oncology clinics. Patients reported on the daily frequency of behaviours associated with loss orientation and life engagement using a standardised questionnaire. We characterised each patient's pattern of change with three parameters: the mean level (5-point-scale from 0=never to 4=always), mean fluctuation between successive days (MSSD) and the association between changes in loss and life orientation over time. We further explored the relationship between these patterns and free-text diaries. The daily assessment protocol was acceptable and feasible (46% participation rate, 97% diary completion rate). Individuals differed in mean levels of loss orientation (range: M=0.1 to 2.7) and life engagement (M=0.9 to 3.9), the degree of fluctuation (MSSD=0.1 to 1.5 and MSSD=0.3 to 0.9), and the correlations between these changes over time (r=-.83 to +.46), revealing distinctive intraindividual patterns. Further study of individual profiles in loss and life orientation can promote personalised balancing between facing "reality" and sustaining "hope" in end-of-life conversations.

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