Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers

Abstract

Objectives Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers’ heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers’ knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers’ perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices. Methods Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized. Results Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26–72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers. Significance of results Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

Hospice Caregivers’ Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support

“…For example, coworkers and neighbors can offer seemingly small but important support, such as flexibility in scheduling meetings or helping with yard maintenance, that frees up caregiver time and mental load. Research on non-biological/legal family support and the importance of broader social networks in caregiving is limited but growing [ 35 , 36 , 37 ]; future work can elucidate how caregivers can best leverage this support.…”

“We Treat Everyone Equally”: Hospice Care Team Members’ Language Use Regarding Sexual and Gender Minority Patients and Caregivers

“…The primary study focused on HCT members’ knowledge and opinions related to LGBTQ+ patient and caregiver EOL care needs. 10 All study procedures were approved by the Institutional Review Board of a large University located in the Intermountain West.…”

Inequities Among Cancer Caregivers with Diverse Identities: A Review of the Literature and Future Directions

“…One study by Cloyes and colleagues found that home hospice providers reported LGBTQ + identity as irrelevant to the care provided, not collecting sexual orientation or gender identity (SOGI) regularly, but also reported significant discomfort with providing care to transgender and genderdiverse patients and caregivers. [22] The literature on this topic brings a focus to the tension between collecting SOGI data and how such data is used in the clinical setting-recommending SOGI data could be ideally used for personcentered care to provide equitable transitions for end-of-life care to LGBTQ + patients and caregivers. [22][23][24].…”

“…[22] The literature on this topic brings a focus to the tension between collecting SOGI data and how such data is used in the clinical setting-recommending SOGI data could be ideally used for personcentered care to provide equitable transitions for end-of-life care to LGBTQ + patients and caregivers. [22][23][24].…”