Navigating End-of-Life Care: Lesbian, Gay, Bisexual, Transgender and Queer Experiences

Background and Purpose: The Institute of Medicine recently released reports identifying research on lesbian, gay, bisexual, transgender and queer (LGBTQ) health disparities as a priority (2011), and calling for improvements in end-of-life care (2014). At the intersection of these issues is the need for research informing end-of-life care practices with LGBTQ people. This study examines how caregiving partners perceive and navigate heteronormative assumptions about gender and family in order to develop more equitable end-of-life care practice models. Analysis was guided by the following questions: 1. How do partners describe and interpret clinician perceptions of their relationships and roles as familial caregivers? 2. How do partners “negotiate”, “comply with” or “resist” heteronormative assumptions and other forms of marginalization in order to maintain their agency as caregivers?

Methods: We conducted an analysis of a purposive sample of 42 transcripts of interviews with LGBTQ people whose partners died and/or were admitted to a hospital intensive care unit (ICU). Transcripts were analyzed using latent thematic analysis, a method well-suited for understanding experiences from the perspective of participants, and contextualizing those experiences within larger sociopolitical contexts (e.g. social values and policies). Data analysis involved coding transcripts and categorizing codes into themes.

Results: This analysis revealed three major themes: Circumventing Problems through Anticipation, Subtle Marginalization, and Maintaining Agency. Circumventing Problems through Anticipation describes partners’ fears of discrimination and strategies employed to avoid marginalization prior to interactions with health care providers. Sources of fear included past experiences of discrimination, or knowledge of others’ experiences, as well as perceptions about the geographic location in which they were receiving care (e.g. politically conservative). Anticipatory strategies included researching LGBTQ-friendly clinicians and obtaining legal documentation of relationship status. Subtle Marginalization refers to nuanced clinical interactions that made partners uncomfortable, either because they revealed a disregard for the significance of their relationships (e.g. calling partners “friends”) or pressured partners to “come out.” Maintaining Agency describes partners’ actions to maintain their roles as caregivers in heteronormative end-of-life care settings. Actions included carrying legal paperwork, feeling compelled to demonstrate constant care to prove commitment, or avoiding confirmation of LGBTQ identity or affectionate physical contact.

Conclusions and Implications: Results indicate that whether or not partners experience overt discrimination when participating in end-of-life care, they are often burdened by fear of discrimination or efforts to navigate heteronormative health care settings. The NASW Standards for Palliative and End-of-Life Care recognize the vulnerability of patients and their families near the end of life and recommend strong assessment and reflexive practice skills to recognize these vulnerabilities and meet ethical obligations to provide quality care. This study suggests that in order to promote equity in end-of-life care, social workers must be finely attuned to LGBTQ partners’ concerns when approaching health care settings, and aware of how clinical interactions might be perceived as unsafe or disrespectful. Social workers and health care organizations must evaluate policies and institutional practices to ensure LGBTQ patients and partners are treated with dignity and respect, and that partners are supported in their roles as caregivers.