Lynn Fletcher, PhD
“The social war: The caregiver’s experience of the transition of a loved one to home hospice care”
Informal caregivers (friends, family, or significant others) who are providing care to frail, chronically ill, and or dying individuals, are the backbone of long term care in this country. The value of the free services provided by these caregivers has been estimated at over $300 billion dollars annually; more than the cost of nursing home and home health care combined. There has been extensive research examining the burdens associated with caregiving however, there is a dearth of research examining the transition experience. Without understanding the caregiver’s experience of the transition of a loved one to home hospice care, we are unlikely to improve it. Using Colaizzi’s method of analysis, this existential phenomenological study examined the caregiver’s experience as they transitioned from life sustaining care to home hospice care with their dying loved one. Eleven caregivers participated in the study. The resulting six themes are described metaphorically as a social war; 1- dropping the bomb; 2- casualties of war; 3- being drafted; 4- bootcamp; 5- shell shocked; and 6- extended tour of duty. The fundamental structure of the phenomenon of the caregiver’s experience of the transition to home hospice care includes the essences; inadequate and insensitive communication, prolonged suffering, compassionless presence, insufficient support and educational resources at the time of discharge, pervasive emotional turmoil, inadequate discharge options for terminally ill persons opting for hospice care, and the ongoing willingness of caregivers to go to battle with their love ones until the end. This research provides the impetus for developing and delivering the educational resources necessary for caregivers to bring their dying loved one home. This begins with bringing the empathetic presence of nurses back to the bedside.