Voices of Older Veterans: Quality-of-Life At the End-of-Life During Late-Stage Lung Cancer

Background and Purpose: The present study describes quality-of-life at the end-of-life (QOLEOL) among older Veterans living with late-stage lung cancer from their own perspectives.  Veterans who receive care through Veterans Health Systems have a higher prevalence of advanced lung cancer and poorer survival outcomes compared to the general U.S. population.  Rather than cure, treatment goals generally include palliative chemotherapy and/or radiation; however, the use of palliative cancer-directed therapies for late-stage lung cancer remain controversial due to questionable intent and benefits. Balancing treatment toxicity with Veterans’ QOLEOL should be prioritized at medical decision points across the continuum of care. Yet, palliative chemotherapy close to death among older adults is an alarming trend, which contributes to uncertainty, ambiguity, and barriers to supportive care such as hospice. As key stakeholders, Veterans’ experiential knowledge about QOLEOL has not been studied and incorporated into medical decision making as part of patient-centered care. 

Methods: A qualitative constructivist design was used with a purposive sample of 12 older male Veterans who were recruited from a VAMC cancer clinic in the southeastern U.S.  Each Veteran was diagnosed with Stage IIIB or IV non-small cell lung cancer or extensive stage small cell lung cancer. The sample was racially diverse and ranged from 55 to 87 years of age (M: 71). QOLEOL from the Veteran’s perspective was elicited through audiotaped individual semi-structured interviews in the Veteran’s home. The interview transcripts were entered into qualitative analysis software NVivo 9.2 and initially analyzed by two coders using grounded theory methods to identify and create coding categories. Further conceptual analysis of thematic patterns reflected an overall theme consistent with loss of “the person I know myself to be.”

Results:  Cognizant that their disease was incurable, Veterans expressed limited understandings about treatment goals or prognosis. Several overlapping categories emerged as important components of QOLEOL: 1) functionality, 2) relationships, and 3) communication. Functionality represents a range of abilities to carry out daily life as usual - issues of sleep, pain, treatment side-effects, comorbidities, independence, and maintaining control. Rather than themselves, family members were at the center of Veterans’ future concerns. Moreover, the inability to sustain meaningful friendships because of decreased functionality or perception of such by others surfaced. As a theme that intersected functionality and relationships, communication crossed the scope of Veterans’ narratives demonstrating the importance of interaction, contexts, and interconnectedness (e.g., healthcare providers, family, and friends). Poor communication about life expectancy contributed to lost moments and isolation as forms of suffering. Personhood emerged as a concept important to individual QOLEOL while living with uncertainty, ambiguity, and loss.

Conclusions and Implications:  These findings contribute to the advanced lung cancer literature where QOLEOL is primarily measured using predefined health-related QOL domains.  This patient-centered approach to understand QOLEOL supports the use of experiential knowledge to affirm values voiced as important to older Veterans with advanced disease. Practice implications apply to social workers who practice collaboratively as interdisciplinary team members to advocate and incorporate experiential knowledge into decisions to forgo or continue cancer-directed therapies.