Does caregiver knowledge matter for hospice enrollment and beyond? Pilot study of minority hospice patients

Abstract

We examined the level of hospice knowledge of caregivers of minority elderly hospice patients and determined how it influences the hospice enrollment decision and the decision on the use of hospice services after enrollment. Based on qualitative analysis of medical records and interviews with caregivers of minority elderly hospice patients who received personal care from paid caregivers (eg, other than family caregivers), we found that hospice knowledge increased access to hospice among minority patients who otherwise would not opt for hospice or enroll too late for comprehensive hospice care services. Furthermore, the highest level of knowledge-acquired through caregivers' health care occupations-appears to influence hospice care after hospice enrollment. Caregivers with that level of knowledge made requests for changes in site of care and/or additional services that may enhance the quality of hospice care that their loved ones receive.