Abstract 18112: LVAD Recipient and Caregiver Perspective on Prognosis and End of Life Care: A Qualitative Study
Matthew Mignery, Aroosa Malik, Supriya Shore- Physiology (medical)
- Cardiology and Cardiovascular Medicine
Background: For left ventricular assist device (LVAD) recipients and caregivers, accurate understanding of prognosis is central to shared decision making. Our study evaluates (i) patient and caregiver estimated survival after a LVAD and (ii) describes how patients and caregivers rationalize estimated survival.
Methods: We conducted a qualitative study with 18 LVAD recipients and 9 caregivers using semi-structured interviews. Interviews were transcribed and coded, with themes identified using rapid qualitative analysis.
Results: Included patients had a median (range) age of 60.5 (28-83) years, 12 (67%) were men and 10 (56%) received their LVAD as destination therapy (DT). Participating caregivers included 8 (89%) women supporting 5 (56%) DT LVAD recipients. Depression was reported by 7 (39%) patients and 2 (22%) caregivers. Reported quality of life was low for most participants [median EQ-VAS score 60 (range 25-70) for patients and 50 (range 20-80) for caregivers]. Only 6 patients reported willingness to trade survival in favor of better quality of life. In the event of cardiac arrest, 15 (83%) patients and 7 (78%) caregivers reported wanting CPR for themselves or loved one. Although most participants reported health concerns primarily relating to their cardiac health and LVAD complications, both patients and caregivers provided high estimates of life expectancy [median 16 (range 3-45) and 14 (range 3-32) years respectively]. We identified three themes explaining how LVAD recipients and caregivers rationalize their estimated survival (i) survivor’s bias (ii) optimism (iii) minimization. Exemplary quotes are provided in the Table below.
Conclusions: Several patients and caregivers reported low quality of life with concerns around poor cardiovascular health and LVAD complications. However, their estimated survival frequently exceeded clinically observed survival. This suggests an opportunity for improving patient-physician prognosis communication.