The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature

Background Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers’ experiences of grief and bereavement. To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods Using Arksey and O’Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions Understanding the nuances of informal caregivers’ experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Last Days and Hours of Life

Most dying patients take a peaceful road to death, progressing from sleepiness to lethargy to coma to death, without substantial agitation. Although many dying patients experience fever, hypotension, and tachycardia, no combination of physical signs accurately predicts death. Noisy respiratory secretions should be prevented and treated by discontinuing artificial hydration and nutrition and by prescribing anticholinergic drugs such as glycopyrrolate or a scopolamine patch. Delirium at the end of life is not generally evaluated with blood tests or imaging but is treated with nonpharmacological measures or with haloperidol. Teach the family what to expect as death approaches. Be prepared with a systematic approach to declaring death and comforting families in the early stages of grief and bereavement.