Abstract 13221: Family Caregivers’ Perceptions of Illness Severity in Heart Failure Patients with Limited Life Expectancy
Introduction: End-of-life (EOL) services, such as hospice and palliative care are often lacking even for the sickest heart failure (HF) patients. Use of these services have been hampered by the lack of availability, lack of referrals due to the unpredictable course in HF, and refusal of services by patients and caregivers due to a lack of understanding of the terminality of HF. The purpose of this study was to determine whether caregivers of HF patients with a predicted survival of less than 2 years, understood disease terminality prior to and after the patient’s death.
Methods: As part of a longitudinal study of 100 patient-caregiver dyads, caregivers were interviewed monthly until the patient’s death and then twice post-death. Caregiver interviews immediately preceding and post-patient death were analyzed to determine caregivers’ perceptions of the terminality of heart failure.
Results: There were 49 caregivers of patients who died. Patients died an average of 8 months after study enrollment. Most caregivers did not understand the severity of the patient’s disease and 51% (25/49) viewed the death as unexpected. When caregivers retrospectively reflected on the patient’s illness trajectory, they recounted downward trends in patient’s health, but were not aware of the terminality of the patient until after death occurred. Those few caregivers who perceived the illness severity prior to death came to this realization late in the disease trajectory. At the point of recognition, advanced treatments were limited or withdrawn and the short-term use of EOL services such as palliative care or hospice was instituted.
Conclusions: The lack of perceived illness severity/terminality has profound implications for patients, caregivers, and healthcare providers. Patients and caregivers who do not understand the seriousness of the illness are less likely to accept EOL services, if offered. Clinicians need to understand the HF EOL trajectory and that EOL discussions and advance care planning help patients and caregivers make informed choices and receive quality care at EOL. We also need to educate all healthcare providers about having these discussions, so palliative care becomes a philosophy of care not merely a referral service immediately preceding death.
Author Disclosures: L. Kitko: None. J. Hupcey: None. M. Palese: None.
- © 2014 by American Heart Association, Inc.