Feature ArticlesThe Lived Experiences of Family Caregivers of Persons Dying in Home Hospice Support, Advocacy, and Information Urgently NeededMcFarlane, Judith DrPH; Liu, Fuqin PhD Author Information Judith McFarlane, DrPH, is professor, Texas Woman's University, Houston, Texas. Fuqin Liu, PhD, is associate professor, Texas Woman's University, Denton, Texas. Funding from Sigma Theta Tau International, Beta Beta Chapter, and the Texas Woman's University small grants initiative. Address correspondence to Judith McFarlane, DrPH, 6700 Fannin, Houston, TX 77030 ([email protected]). The authors have no conflicts of interest to disclose. Journal of Hospice & Palliative Nursing: April 2020 - Volume 22 - Issue 2 - p 145-151 doi: 10.1097/NJH.0000000000000632 Buy Metrics Abstract Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying. Copyright © 2020 by The Hospice and Palliative Nurses Association. All rights reserved.