Developing a Patient-Centered Palliative Care Program for Patients with a Destination Therapy Ventricular Assist Device

Heart failure (HF) affects millions of patients and is associated with significant morbidity and mortality.1 Nearly half of patients will die within 5 years of diagnosis. Patients with advanced HF who are not candidates for heart transplantation may be candidates for life-long support with a destination therapy ventricular assist device (DT-VAD).2,3 Almost all DT-VAD patients will die with their devices in place, but there are no clinical standards or practice guidelines delineating optimal end-of-life care for these patients. As a result, VAD patients receive minimal end-of-life support and preparedness planning for death. VAD-specific advanced directives are rarely completed and only 50% of DT-VAD patients receive palliative care servies in the month preceding death.6,7 Unfortunately, many DT-VAD patients die in the intensive care unit after receiving aggressive medical interventions, and caregivers of patients describe high levels of anxiety and confusion surrounding death.6,7 Thus, preparing DT-VAD patients and caregivers for the end of life and caring for them during the dying process represents a major unmet need in cardiovascular medicine. By interviewing caregivers of deceased patients and a multidisciplinary team of cardiology and palliative care clinicians, we will create a patient-centered palliative care program for DT-VAD patients. Personalized end-of-life care for patients and their families may contribute to improved patient and caregiver outcomes and reduced healthcare costs.