LVAD-DT as the Final Destination: End-of-Life Experiences

Abstract

Introduction As the number of persons living with advanced heart failure (HF) continues to increase, so does the implantation of mechanical circulatory support devices. Over half of the left ventricular assist devices (LVADs) currently implanted are indicated for destination therapy (DT) but there is a gap in the current evidence regarding the end-of-life experiences (EOL) of this group. Purpose To investigate the EOL experiences of LVAD-DT recipients and their family caregivers throughout the LVAD-DT trajectory including: 1) pre-implantation experiences, 2) conversations about device deactivation, 3) use of EOL services including palliative care and hospice, and 4) device deactivation prior to death. Methods Thirty five individuals and their family caregivers (n=70) from 2 longitudinal prospective studies participated in qualitative interviews that occurred approximately every month for up to 24 months or until the death of the LVAD-DT recipient. After the death of LVAD-DT recipient, the caregiver was interviewed about LVAD deactivation and use of EOL services. Qualitative content analysis was utilized to explore the experiences of participants through the EOL. EOL service utilization determined via EMR review. Results During study enrollment LVAD-DT recipients had on average 6 readmissions. The main reasons for readmission included: infection/ sepsis, GI bleed, RHF, and anemia. Sixty percent of the dyads (21/35) received a palliative care consult prior to implantation. Of those only 19% (4/21) recalled the consultation. Six out of thirty five (17%) had an advance directive in the EMR. All advance directives were completed prior to LVAD-DT implantation and none included documentation of wishes for device deactivation. The main results from the content analysis highlighted the lack of EOL planning. LVAD-DT recipients and caregivers did not recall advance care planning or conversations regarding device deactivation throughout the LVAD trajectory. Six patients died with an LVAD in place. Of those, 2 received no EOL services, 3 had EOL services only during their terminal hospitalization, and 1 had ongoing EOL services during the last month of life with deactivation in the home setting prior to death. Conclusions The pre-implantation period is a very busy time, if palliative care consults occurred they often were not remembered by the LVAD recipient or their family member. EOL services were not routinely initiated nor did they transition across episodes of care or settings, despite frequent hospitalizations in the post-implantation period. Additional research is needed on the role of improved EOL care coordination across settings and episodes of care.