title: Missed Opportunity: Hospice Care and the Family.
abstract: A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.
authors.affiliation: a Department of Sociology , University of Utah , Salt Lake City , Utah , USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Tabler
authors.affiliation: a Department of Sociology , University of Utah , Salt Lake City , Utah , USA.
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Utz
authors.affiliation: b College of Nursing , University of Utah , Salt Lake City , Utah , USA.
authors.forename: Lee
authors.initials: L
authors.lastname: Ellington
authors.affiliation: c Department of Health Outcomes & Behavior , Moffitt Cancer Center , Tampa , Florida , USA.
authors.forename: Maija
authors.initials: M
authors.lastname: Reblin
authors.affiliation: b College of Nursing , University of Utah , Salt Lake City , Utah , USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Caserta
authors.affiliation: b College of Nursing , University of Utah , Salt Lake City , Utah , USA.
authors.forename: Margaret
authors.initials: M
authors.lastname: Clayton
authors.affiliation: d Department of Sociology , California State University San Bernardino , San Bernardino , California , USA.
authors.forename: Dale
authors.initials: D
authors.lastname: Lund
mesh_terms: D000368:Aged; D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006117:Grief; D017051:Hospice Care / Q000458:organization & administration*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D017060:Patient Satisfaction; D036301:Qualitative Research; D012189:Retrospective Studies; D012947:Social Work / Q000458:organization & administration; D018454:Spouses / Q000523:psychology*
keywords: bereavement; caregivers; family caregivers; grief/loss; hospice