Abstract 14686: The Experience of Caring for a Spouse with End-Stage Heart Failure Following Implantation of a Left Ventricular Assist Device as Destination Therapy

Abstract

Interventions for HF are continually being developed to extend life. One such intervention, the LVAD, is now being implanted permanently as a life-prolonging end-of-life treatment for patients. Although the numbers of LVAD-DTs has increased exponentially, little research has been done on the impact on patients and their caregivers, in particular the role spousal caregivers play in supporting the patient and the device. This study explored the experiences of spousal caregivers of patients with a LVAD-DT.

Methods: Ten spousal caregivers were interviewed by phone about their experiences of caring for a patient with advanced HF as they transitioned to and lived with a LVAD-DT. Thematic analyses of these in-depth interviews were done by a team of qualitative researchers.

Results: Spousal caregivers described their experiences both pre-LVAD and how their lives changed post-LVAD. Prior to the LVAD, caregivers worked to maintain patient stability, but with the declining health and QOL of their spouses, they felt there was no choice but to consent for the LVAD. Early post-implant, caregivers were very stressed about caring for both the patient and the LVAD. Although over time they became comfortable with the device, they continued to have a heightened sense of responsibility for managing the device, particularly with the ever-present fear that death could result if the device failed. As they lived with the LVAD, the permanency of the LVAD was evident and some caregivers described regret over the decision to have it implanted.

Conclusions: Although LVAD-DTs are intended to improve the lives of patients with advanced HF, the caregiving role post-implant remains challenging. Spousal caregivers are an integral part of the team providing care for these patients, yet their concerns are rarely addressed by healthcare providers. Caregivers need to be supported in this new role as they live through this end-of-life experience.