Preparing Family Caregivers for Death and Bereavement. Insights from Caregivers of Terminally Ill Patients

Abstract

Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks.

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

“…They can play a key role in providing psychosocial care and support, helping people make important choices about home versus hospital care amidst the often changing and uncertain trajectory of advanced illness (Hebert, Schulz, Copeland, & Arnold, 2009;Hobart, 2002). However, more information on expectations concerning hospital decision making is critically needed to help social workers and other health care professionals gain a greater understanding of the decision-making process, develop culturally sensitive interventions, and refine strategies for addressing conflicts between care recipients and their caregivers.…”

Impact of death and dying on the personal lives and practices of palliative and hospice care professionals

“…[1][2][3][4][5] A small number of studies discussed the residual impact of end-of-life care within a localized group of health care providers; however, there is limited cross-sectional research explicitly investigating the long-term effect of death and dying on the personal and professional lives of individuals who are exposed to death and dying on a frequent basis. [6][7][8][9][10][11][12][13][14][15] To address these gaps in the literature, this study explored the impact of death and dying on the lives of key leaders and frontline professionals in palliative and hospice care -individuals who arguably provide society and health care practitioners with the most authoritative discourse on end of life and its effect on life in general.…”

The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

“…For the nurse it is important to be sensitive to the next-of-kin's state, that is, which state they are in their suffering. This can be compared to Hebert et al [13] thoughts about how preparedness can be seen in different dimensions; they suggest that the next-of-kin might need cognitive, affective, or/and behavioral support. Thus it is of uttermost importance not to force the next-of-kin into either state.…”

“…There is often a commitment to make the remaining time for the dying person as good as possible. Hebert et al [13] show that next-of-kin need support from health care personnel in order to prepare themselves for the impending loss. The preparedness needs to have cognitive, affective, and behavioral dimensions.…”