“The trouble with hospice is that they talk about death:” Why Latinos with cancer under use hospice

Cancer is the leading cause of death among Latinos in the US. Within the aging U.S. population, Latinos are the largest and fastest growing minority group. Although little research exists, there is evidence that Latino cancer caregivers have worse outcomes including more depression and poorer quality of life in bereavement. Studies have shown that hospices can provide better care and less stress for the caregiver than hospitals or unsupported home care. Unfortunately hospice use is low and only 2% to 6% of hospice patients are Latino. An academic/community partnership was established between the Latin American Cancer Research Coalition (LACRC) and area hospices to examine the effects of culture on Latino caregiving decisions and experience. We used qualitative methods to conduct 8 focus groups: 4 focus groups of Latino bereaved former caregivers and 4 focus groups of White bereaved former caregivers. Half of each sample used hospice. Thematic analysis, comparing Latinos and Whites, identified several cultural factors that influence hospice use and outcomes in Latinos; these factors were distinct from factors articulated by Whites. Examples of these culturally-based perspectives include denial (refusal to accept the prognosis), secrecy (It is cruel to tell a person they have cancer or they are going to die), and a collective, family-centered system (family should do all care themselves). These values are diametrically opposed to the general hospice philosophy of acceptance, open communication about death and autonomy. Future efforts to improve the quality of end of life care in Latinos will need to consider cultural context.