‘If Anybody Looked, I Was Always There': Recognition and Participatory Parity for Lgbtq Medical Surrogate Decision Makers

Background/Purpose: The importance of close family members as surrogate decision makers for seriously ill patients has been well-established. However, little is known about the experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ) partners who act in these roles. Available research and anecdotal accounts suggest that LGBTQ partners may be marginalized in the context of medical surrogate decision making as a result of legal exclusion from the spousal role in most states, and clinicians’ failures to recognize the significance of partners’ relationships. This paper aims to describe LGBTQ partners’ experiences as surrogate decision makers in relation to participatory parity, Fraser’s (2003) evaluative standard for social justice.

Method: Fraser’s (2003) conceptualization of participatory parity as a condition for social justice provided the theoretical framework for this paper. Participatory parity represents the opportunity to be allowed full participation as a peer in social life through social equity (distributive justice) and socio-cultural institutional patterns that constitute individuals as worthy of respect and esteem (recognition). We analyzed 50 transcripts of semi-structured interviews with LGBTQ-identified individuals who acted as surrogate decision makers for partners who were unable to make decisions due to serious illness. Targeted thematic analysis proceeded through three major steps: reading and summarizing each interview to understand critical moments that characterize surrogate recognition; coding deductively for evidence of participatory parity in surrogate decision making based on Fraser’s model; and coding inductively for major themes that were present in more than one transcript.  Each interview was compared for explicit and implicit representations of spousal recognition in the surrogate decision-making process.  

Results: Three key findings emerged from this analysis indicating that LGBTQ partners do not experience participatory parity in the context of medical surrogate decision making. First, partners described negative experiences and uncertainty about whether limited inclusion in decision making was related to their status as LGBTQ partners. Second, partners described significant attempts to demonstrate their spousal roles to health care providers to garner recognition or make clinicians aware that patients had loving support. These overt efforts raised concerns about “coming out” to health care professionals who might not condone their relationships.  Third, participants described behavioral adaptations, such as avoiding physical contact when comforting their partners or restraining from making demands of clinicians that could be viewed as confrontational, in order to avoid hostility or discriminatory care of their partners.

Implications: Limitations to participatory parity for LGBTQ partners acting as medical surrogate decision makers represent a significant injustice and ethical concern for social workers practicing in health care settings. These findings suggest that LGBTQ partners’ experiences reflect institutionalized patterns of marginalization which are not sufficiently remedied by legal inclusion in decision making alone. Even when legal documentation or clinical practices for determining surrogate decision makers designate LGBTQ partners as decision-makers, misrecognition may occur, thereby restricting access to participatory parity. Therefore, calls for justice in this context must incorporate critical examination of institutional relations that create subordinate social statuses and the ways in which these relations are reified and reproduced in the clinical setting.