UCSF

THE EXPERIENCE OF OLDER MEN WITH HEART FAILURE WHO ARE RECEIVING PALLIATIVE CARE

M. Janelle Culjis

University of California, San Francisco, 2013

ABSTRACT

Purpose: The aim of this study was to describe the lived experiences of older men with heart failure who are managing symptoms near end-of-life, specifically to describe and learn how older men manage symptoms with those who support their care.

Significance: The care of older persons with heart failure is a national priority. It is a leading source of hospitalizations in a growing older population. Older adult's ability to self-manage is a fundamental aspect of the care of heart failure; this dissertation builds on how self-management is accomplished in the home environment of older adults with heart failure near end-of-life.

Design: An interpretive, qualitative design.

Participants: Older men (n=15), age 75 to 95, and their caregivers (n=15) living in northern California. Men were Veterans with late stage heart failure receiving palliative care from an interdisciplinary home based primary care team.

Methods: Semi-structured tape-recorded interviews and observation in the participant's homes. Data analysis consisted of thematic analysis influenced by interpretive interactionism and phenomenology. Emerging themes were analyzed to determine commonalities among participants. Data was collected over 2 years.

Results: The meanings of the home environment in management of symptoms and the importance of congruence of goals of care during the transition to hospice were major findings of this study. Men experienced difficulties with symptom recognition in the presence of high symptom burden. The home environment has a pivotal role in supporting their abilities to manage symptoms and their desire to stay at home. Hospitalizations occurred with a watch and wait approach to symptom management. When faced with the transition to hospice care, men and their caregivers resisted hospice with a preference for continued hospitalizations. The men's goals of care were living while dying contrasted with health professionals goals, who view hospice as a supportive option for these men whom they regard as dying but still alive.

Conclusion: The home environment plays a significant role in how older adults and their caregivers manage symptoms near end-of-life. Further research is needed to determine how best to provide concurrent palliative care based on the experiences of older persons with advanced heart failure.