End-of-Life Care,Symptom Burden,and Quality of Life in Couples Facing Stage IV Lung Cancer: The Role of Patient and Spousal Psychospirituality and Discussions Around Fear of Death and Disease Progression

Abstract

Background:

As patients live longer with stage IV nonsmall cell lung cancer, correlates of end-of-life (EOL) care and experience are increasingly relevant.

Methods:

We, therefore, prospectively examined associations among psychospirituality (Center for Epidemiologic Studies Depression Scale, Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being), discussions around fear of death and disease progression, and hospital-based EOL care in patients and caregivers. Patients additionally reported symptom burden (MD Anderson Symptom Inventory–Lung Cancer total) and quality of life (QOL) (quality-of-life at EOL).

Results:

Of the baseline patients (n = 75), 32% were alive at time of the analyses (mean = 4.6 years postbaseline). Deceased patients (n = 51) were middle aged (mean = 65.3 years) and non-Hispanic White (81%). Caregiver spiritual well-being (r = 0.34, p = 0.02) and depression (r = −0.31, p = 0.03) were associated with EOL care metrics. Patients who “held back” more of their fear of death or disease progression experienced greater symptom burden (r = 0.41, p < 0.001) and poorer QOL (r = −0.44, p < 0.001).

Conclusion:

For couples facing prolonged metastatic disease, psychospirituality is highly relevant to EOL care with potential sequelae of withholding one's fear regarding death or disease progression.