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

<b><i>Background:</i></b> As patients live longer with stage IV nonsmall cell lung cancer, correlates of end-of-life (EOL) care and experience are increasingly relevant. <b><i>Methods:</i></b> 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). <b><i>Results:</i></b> Of the baseline patients (<i>n</i> = 75), 32% were alive at time of the analyses (mean = 4.6 years postbaseline). Deceased patients (<i>n</i> = 51) were middle aged (mean = 65.3 years) and non-Hispanic White (81%). Caregiver spiritual well-being (<i>r</i> = 0.34, <i>p</i> = 0.02) and depression (<i>r</i> = -0.31, <i>p</i> = 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 (<i>r</i> = 0.41, <i>p</i> < 0.001) and poorer QOL (<i>r</i> = -0.44, <i>p</i> < 0.001). <b><i>Conclusion:</i></b> 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.