The Preference to Discuss Expected Survival Is Associated with Loss of Meaning and Purpose in Terminally Ill Cancer Patients

BACKGROUND: Demoralization is a syndrome of existential distress characterized by loss of meaning and purpose in life, hopelessness, and helplessness. Empirical data on its occurrence and associated factors in terminally ill patients is limited.

OBJECTIVE: The study objective was to determine the frequency of demoralization and its association with individual and disease-related characteristics and to analyze the association between demoralization and the preference to discuss expected survival.

METHODS: We recruited N = 55 terminally ill cancer patients (54% women, mean age 67 years) within 48 hours after admission to a specialized palliative care inpatient ward (55% had a Karnofsky performance status of ≤50). Patients completed the Demoralization Scale (DS), the Generalized Anxiety Disorder Scale-7 (GAD-7), the Patient Health Questionnaire-9 (PHQ-9), and a single-item question measuring preferences for discussion of expected survival with a physician.

RESULTS: We found clinically significant demoralization present in 19% and moderate demoralization present in 10% of participants. Better educated patients reported a higher level of demoralization (d = 0.74, p = .010). Patients with a preference to discuss expected survival reported higher levels in the "loss of meaning and purpose" dimension of demoralization (d = 0.76, p = .010) and higher levels of anxiety (d = 0.88, p = .003) compared to those not wanting to discuss survival.

CONCLUSIONS: Demoralization is a significant dimension of distress in terminally ill cancer patients. In the end-of-life inpatient care setting, the preference to discuss expected survival with a physician can parallel existential distress and anxiety. Further elucidation of patients' underlying existential needs will inform interventions that sustain meaning and hope in face of a limited life expectancy.