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

Published online by Cambridge University Press:  19 May 2022

Kristin G. Cloyes Open the ORCID record for Kristin G. Cloyes [Opens in a new window] ,
Miranda Jones ,
Caroline Gettens ,
Sarah E. Wawrzynski Open the ORCID record for Sarah E. Wawrzynski [Opens in a new window] ,
Sara Bybee ,
Djin L. Tay ,
Maija Reblin Open the ORCID record for Maija Reblin [Opens in a new window]  and
Lee Ellington
Kristin G. Cloyes*
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
Miranda Jones
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
Caroline Gettens
Affiliation:
School of Nursing, Simmons University, Boston, MA
Sarah E. Wawrzynski
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
Sara Bybee
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
Djin L. Tay
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
Maija Reblin
Affiliation:
Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL
Lee Ellington
Affiliation:
College of Nursing, University of Utah, Salt Lake City, UT
*
Author for correspondence: Kristin G. Cloyes, College of Nursing, University of Utah, Salt Lake City, UT, USA. E-mail: kristin.cloyes@nurs.utah.edu
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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.

Keywords

End of lifeEOLHospiceHospice interdisciplinary teamLGBTQ+
Type
Original Article
Information
Palliative & Supportive Care , Volume 21 , Issue 1 , February 2023 , pp. 3 - 11
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Copyright
© The Author(s), 2022. Published by Cambridge University Press

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