Predictors of patient and primary caregiver ability to sustain a planned program of home hospice care

Abstract

Inappropriate lifesustaining treatment without hope of improved quality of life for terminally ill patients is a social problem resulting from denial of mortality in our society. Social workers promote acceptance of death as part of multidisciplinary teams within home hospice programs. An important hospice outcome is ability to sustain a planned program of home hospice care, as opposed to placing the patient in an inpatient setting where lifesustaining treatment might be provided. Qualitative as well as quantitative methodologies were employed for this study, within a survey design which involved chart reviews and interviews of 68 home hospice patients and their primary caregivers, nurses, and social workers. Patient characteristics previously tested in a causal model of acceptance of death (including patient denial, patient spirituality, patient death anxiety, Activities of Daily Living status, and age) were added to environmental influences (including health insurance, length of time in program, Do Not Resuscitate Order, primary caregiver denial, primary caregiver values, hospice contacts, and hospice certification), and statistically analyzed for influence upon the hospice outcome of patient and primary caregiver ability to sustain home hospice care. Results showed support for the influence of primary caregiver denial, Activities of Daily Living status, patient death anxiety, age, length of time in the program, and primary caregiver values upon ability to sustain home hospice care. Mixed results were found for the influence of patient spirituality, hospice contacts, and hospice certification. Qualitative findings emphasized the importance of family support and hospice services in enabling the patient to remain in the home. Results provide information regarding sample characteristics, hospice services received, and prevalence of the problem. Two scales are presented to measure hospice values and denial. The use of proxy data is examined. Gaps and conflicts in the literature are addressed. Results have implications for theory, including the documentation of two dimensions of spirituality. Results indicate the importance of working with the family, particularly with primary caregiver denial, since primary caregivers in denial may make treatment decisions which are inconsistent with the wishes of the patient.