Abstract 14981: Home Healthcare Services for Heart Failure Patients and Family Caregivers Dyads at End of Life

Abstract

Background: Home healthcare services, including nursing, palliative care and hospice, have been recommended to meet the needs of patient-caregiver dyads throughout the end-of-life (EOL) heart failure trajectory. Although the number of end-stage HF patients referred to hospice has significantly increased since 2000, according to CDC statistics, heart disease accounted for only 11% of hospice admissions and only 6.4% were for heart failure. For other home healthcare services, which include a wide-range of medical and therapeutic services, only 4.3% of admissions were for heart failure. There are many reasons why patients and caregivers do not receive these services. In addition to not being offered these services during discharge after an acute heart failure exacerbation, dyads (as a whole or one member of the dyad), at times, refuse to accept these home healthcare services or when accepted; it is within days of the patient’s death.

Methods: Fifty dyads, who are part of a longitudinal qualitative study of heart failure patients with either a <1-year or <2-year predicted survival, were asked about services offered, accepted, and if not accepted, why services were not accepted.

Results: The majority of dyads were not offered services even with death imminent, and if offered, many dyads refused to accept them. Reasons for not accepting services varied. The main theme expressed by the caregivers was their desire to continue to provide care even under challenging EOL conditions. There was also reluctance by dyads to even discuss hospice. Once accepted, the end-of-life experiences improved for both the patient and caregiver.

Conclusion: As dyads transitions to EOL, healthcare providers need to be cognizant of the home healthcare needs of patient-caregiver dyads. During this most stressful time for both the patient and caregiver, services should both be offered and acceptance of these services encouraged.