'The worst thing about hospice is that they talk about death': contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers.
Hospice care is promoted as a model for improving end of life care and decreasing burden on caregivers. However, hospice use is low in Latinos and little is known about how Latinos make hospice decisions and experience hospice once enrolled. Qualitative methods were used in this study to conduct in-depth interviews and focus groups with 15 Latino bereaved hospice family caregivers and 15 White non-Latino bereaved hospice family caregivers to describe hospice experiences and evaluate whether cultural factors affected the experience. Differences in decision-making and caregiving experience were identified that were influenced by culture. For example, cultural values of denial, secrecy about prognosis and a collective, family-centered system influenced hospice decisions and experience in Latinos but not non-Latinos. This study identifies a significant dilemma: that is, how to discuss hospice with a patient and family who prefer not to discuss a terminal prognosis. Future research is needed to extend these preliminary results; such results may be useful for designing interventions to improve end of life care and caregiving in Latinos.
Department of Oncology, Cancer Control Program, Georgetown University Medical Center, Washington, DC, USA.
Barbara
B
Kreling
Claire
C
Selsky
Monique
M
Perret-Gentil
Elmer E
EE
Huerta
Jeanne S
JS
Mandelblatt
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death / Q000208:ethnology*; D017028:Caregivers / Q000523:psychology*; D002489:Central America / Q000208:ethnology; D003657:Decision Making; D054242:Emigrants and Immigrants / Q000523:psychology; D005192:Family Health; D006630:Hispanic or Latino / Q000523:psychology*; D017051:Hospice Care; D006801:Humans; D008875:Middle Aged; D036301:Qualitative Research; D012017:Referral and Consultation; D013020:South America / Q000208:ethnology; D014481:United States; D044465:White People / Q000523:psychology*; D055815:Young Adult