Living on the edge of a precipice: The psychosocial experience of advanced heart failure patients and their carers managing at home

This paper presents the findings of a qualitative study of the lived experience of advanced heart failure patients and their primary carer.

Background• Heart failure is an incurable, progressive disease causing systemic problems and is associated with high morbidity and mortality, impaired functioning, and a generally poor quality of life. While the cardiac team carefully monitor patients' deterioration, adjusting treatment accordingly, the prolonged psychosocial turmoil experienced by patients and their carers has received less attention or support from appropriate services such as palliative care.

Methods• A qualitative approach was utilised to explore the everyday life of patients and their carers dealing with the complexities and uncertainties of living with advanced or end-stage heart failure at home. The study conducted within the Metro North Health Service District, involved fifteen participants; seven patients, five current carers and three widows.

Data collection included semi-structured interviews, observation and field notes. All but one participant were interviewed at home. Participants were purposefully selected on the basis of their prognosis of Class III or Class IV heart failure according to the NYHA classification.

Findings• The burden of living with heart failure was compounded by the protracted progress of the disease that caused a precarious state of vulnerability for patients and their carers. The carer's role was dynamic and became increasingly complex as the patient lost stamina and motivation.

The difficulties of the carer's role were exacerbated by uncoordinated and discordant communication between service providers. Examples demonstrated in this study included, the lack of timely discharge planning and delayed transfer of information from hospital to patients' GPs, and contradictory advice from different specialists. All participants were fully cognisant of their poor prognosis and disappointed that conversations about palliative care and end-of life issues were generally avoided.

Acknowledgement
This study was funded by a Queensland Nursing Council research grant.