Purpose: Medical and technological advances have transformed the nature of dying from an acute to a gradual and ambiguous transition that largely occurs in later life and follows long-term chronic disease. Individuals living with progressive, life-threatening illnesses and their caregivers are often unsure of when the transition between “living” and “dying” occurs, and many patients die without ever being considered “at end-of-life”. Ambiguity in the dying experience can be a major source of stress for older couples who must often balance the provision of care with respect for autonomy, aggressive treatment with quality-of-life, and individual with dyadic understandings and preferences. Research on the end of life has primarily emphasized the individual responses of patients and their caregivers. Relatively little empirical attention has been paid to the experiences of older adults, and very few studies have been done within the context of the partner relationship. The aim of this qualitative study was to broaden the understanding of social workers and other health care professionals of the subjective and intersubjective experiences of older couples living with advanced illness. The study focused on the patient/partner caregiver dyad as the unit of analysis in order to investigate the processes of care, support, communication, and meaning among older adults and their partner caregivers.

Methods: Data were drawn from a larger cross-sectional study of symptom management in older patients with advanced cancer. The current study analyzed focused, semi-structured, in-depth interviews with 35 adults and their partner caregivers. Interviews were audio-taped, transcribed verbatim and coded independently by several researchers. Themes were derived inductively through grounded theory coding methods, were compared within and across dyads, and analyzed using relational methods designed to highlight individual, dyadic and interpersonal dynamics. In order to enhance rigor and quality, data were triangulated through interviews with formal and informal caregivers, emerging themes were tested through constant comparison, and deviant cases were analyzed.

Results: Older couples described the significance of the partner relationship in accommodating to the disease and treatment. Patients and partner caregivers experienced sometimes conflicting individual and dyadic discourses in three principal domains: dyadic structure and care; communication and medical decision-making; and individual and dyadic search for meaning in the face of ambiguity at the end-of-life. Several dyadic adaptive tasks emerged in respondents' reports of successful adaptation.

Implications: Findings from the study suggest that older couples represent an important target for social work intervention. Understanding the dynamics of older patient and partner caregiver dyads can sensitize workers to the importance of including partners in assessment, psychosocial interventions and medical decision-making at end-of-life. Helping couples negotiate changes and work though differences in perceptions and desires can support individual and family self-determination, and can alleviate unnecessary stress at this difficult time of life.