Breaking the script in healthcare to improve care for LGBTQ+ people with serious illness

Abstract

LGBTQ+ people experience bias, stigma, and discrimination during interactions with healthcare providers. Highly-scripted systems limit how people share critical information about themselves, their values, and their goals of care. Practicing person-centered communication and narrative-eliciting skills, instead of imposing scripts, opens safer spaces for patients and caregivers to assert their truths.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-026-02254-2.

Dealing with serious illness—our own or that of people we love and care about– is one of life’s most difficult challenges. For people who are lesbian, gay, bisexual, transgender, queer, and members of other sexual and gender minority groups (LGBTQ+), serious illness can be even more difficult to navigate. Longstanding, structural inequities including financial insecurity, differential social capital, life-course experiences of stigma and discrimination, [1] and the effects of these inequities on health and wellbeing can limit the availability of personal, social, and economic resources that are required to manage chronic, serious illness and navigate acute and palliative care systems [2–6].

Researchers have been identifying disparities in chronic and serious illness care, hospice, palliative, and end-of-life (HPEOL) care, and patient-provider communication for more than a decade, as evidenced by recently published rapid, scoping, and systemic reviews [7–9]. For many years, given this understudied and neglected community, it was important for LGBTQ+ researchers to explain the problem: LGBTQ+ people are disproportionally at high risk for low-quality care, and especially around serious illness.

Subsequent studies have emerged underscoring the problem and explaining the many interpersonal, organizational, systemic, cultural, and structural reasons for the growing disparities.

One-third of US LGBTQ+ older adults live at or below the poverty line [10]. Pervasive workplace discrimination and historical lack of legal protections led to job insecurity, lower earning power, lower income, and inadequate insurance [11]. LGBTQ+ people are also less likely to be married and have children, and more likely to have chosen family and friends as caregivers [12]. These relationships, however, are often not acknowledged or accounted for within health care settings.

Many LGBTQ+ people, especially older adults, have experienced bias, stigma, and discrimination within their lifetimes, including interactions with healthcare providers. Chronic stress from this stigma can reduce life expectancy by 12 years for LGBTQ+ people [13] LGBTQ+ adults have higher rates of many chronic physical and mental conditions [14] and bear disproportionate risk of developing serious illnesses while also being more likely than non-LGBTQ+ adults to be caregivers for people with serious illness [15, 16].

LGBTQ+ older adults are also at risk for internalized stigma, having lived through decades in which pervasive and dominant social, cultural, religious, legal, and medical institutions pathologized, criminalized, and ostracized them [17, 18]. Self-abnegation, invisibility, and silence were survival strategies for coping with vulnerabilities made even more profound by racial, ethnic, gender, age, poverty, illness, disability, and other forms of discrimination.

This work highlighting disparities has been crucial in paving the way for critical conversations about concrete strategies and interventions to fundamentally improve HPEOL experiences of LGBTQ+ patients and caregivers. A notable tension emerging from the discourse, however, has been to explain the current climate surrounding LGBTQ+ people seeking health care in a way that doesn’t continue to admire problems in HPEOL care equity, but develops specific interventions to address them. Our commentary focuses on one potential solution to the problem of HPEOL care equity for LGBTQ+ patients and caregivers: the effects of communication – more or less the way people talk and listen to LGBTQ+ people – and the consequences it can have on health outcomes.

Consequences of silence during serious illness care

A recent and dramatic increase in anti-LGBTQ+ discourse and legislation in the US and the European Union—particularly laws and actions aimed at transgender people and families– underscores how laws and medical definitions may change, but the legal and practical protections afforded by these changes are not only not permanent, they are increasingly precarious [19]. The rhetoric tied to the recent legislation, fed by ongoing structural inequities, affects the way LGBTQ+ people are seen, talked about, and cared for by providers and systems that are also embedded within these culture-shaping systems. This is particularly true for generations of older adults at higher risk for chronic and serious illnesses, many of whom have cultivated what Pierre Bourdieu would call “a habit of silence”[20–22] as a defense strategy. Habits of silence exist within all aspects of human (and therefore social) life but importantly, they also exist within and shape the delivery of healthcare. Nearly half of LGBTQ+ adults surveyed report that their primary care provider does not know their sexual orientation or gender identity, and they believe that this knowledge could negatively impact their care due to stigma and bias [23]. In a 2021 survey, 56% of LGBTQ+ adults reported discrimination by a healthcare provider; the rate was 70% for transgender or gender-diverse respondents [24]. In 2024, almost two-thirds (65%) of LGBT adults say they experienced at least one form of discrimination in their daily life in the past year [25].

Tensions between managing habits of silence and telling one’s truths is common, and also a dynamic that LGBTQ+ people navigate to access care and care for others. Speak one’s truth and risk being discounted, humiliated, or mistreated? Risk not being at a loved one’s side at a critical time? Maintain silence and not disclose critical information that might impact the care you receive (or not receive)? These dynamics are difficult to navigate at any point in healthcare and are compounded by the many care transitions associated with serious illness care. For older adults who have honed a habit of silence over decades, this dynamic and the many instances of interpersonal calculus it requires can add a profound burden to routine healthcare interactions, even more so to HPEOL interactions with significant existential import.

Scripts within the boundaries of palliative and eol care and person-centered, narrative communication

Scripts are practical and structured instruments that scaffold the performance of specific roles. As instructions guide the design of goal-directed communication interactions, the success of a script is often assessed by its ability to produce the same effect—a specific performance with specific outcomes—in reliable ways.

Healthcare encounters are typically highly scripted. Our forms, intake questions, admission conversations, and advanced care planning sessions follow patterns communication exchanges. These are all critical tools that tell us who a patient is – what they want – what they don’t want. Historical silence—habits of silence formed by both patients and providers—also affect our clinical scripts. While scripts appear to work by guiding what is said and by whom, some of the most powerful effects of scripts are exerted by what is left out, not asked or elicited.

What is not said, asked, or acknowledged is structured by scripts rooted in orthodox (e.g., heteronormative and cis-normative) assumptions and practices. Often, critical demographic characteristics such as sexual orientation and gender identity (SOGI) data are ignored. In the context of serious illness, these silences create and enable conditions within which incomplete communication and inequities in treatment persist impacting the way LGBTQ+ people are cared for [26, 27]. These clinical scripts are embedded with assumptions that aren’t spoken but are heard by those whose narratives don’t fit the scripts. For example, when the question is, “Are you married?”, how do you answer if you’re not legally married or if your partner of many years died? If we think about what we really need to know, we don’t care whether a patient is legally married. What we really care about is their who, their what, and their why: who do they want in the room when talking about diagnosis, treatment and planning? Who will be caring for the patient at home? Who does the patient trust to make healthcare decisions if they can’t? Who will need support if something happens to you? Who are your people? Knowing this information is critical but our scripts fail to allow space to disclose the important information while simultaneously perpetuating silence.

Healthcare systems in which providers fail to ask each patient about who they are as a person and what they value most without relying on the assumptions embedded in normative scripts—which includes eliciting information about SOGI—make the delivery of person-centered HPEOL care particularly challenging. SOGI data elements and questions aren’t currently built into routine intake questions and “get to know you” interactions with patients. Consequently, it can feel uncomfortable, for those asking the questions and for those answering. Unfortunately, this will continue unless healthcare systems, teams, and individuals make it clear that it’s safe to share their story.

For example, family meetings can be highly structured according to a normative script. Like “marriage,” the word “family” has a lot of boundaries that can box people in or out. Countless LGBTQ+ people have been cut off by their family. The word “family” can potentially shut LGBTQ+ people out, and healthcare teams might not find out the who and why of what they really need to know. What if instead of asking about someone’s family, we started asking, “who needs to be in the room when we talk about your care?” “Who’s going to need support so they can support you?” “Who are your people?” These are examples of how current communication scripts contribute the habit of silence and how they can impact individuals and their health care.

The effects of healthcare’s predominant scripts contribute to a lack consistent and comprehensive data about the LGBTQ+ community. As a result, within most serious illness, HPEOL research and care literature, LGBTQ+ people are rendered invisible. It then follows that it is challenging to secure the resources needed to develop, test, and refine patient-centered, community-led interventions aimed at reducing disparities and improving health outcomes for LGBTQ+ patients, and those who care for them.

Breaking scripts and making space for narrative interactions

Providers need practicable ways to elicit and understand how LGBTQ+ patient and caregiver narratives, and their own narratives, shape communication, including the roles of silence, so both providers and patients can make intentional and productive choices by having the skills to navigate speaking us in settings and interactions not often designed to include them [28–31]. Our research suggests that there are identifiable patterns to the narrative arc of LGBTQ+ people with serious illness—life course, structural inequities, also numerous variations and there are unique individual and family needs [26, 29]. Communication competencies informed by both generalizable experiences and by eliciting the critical specifics of each patient’s and each caregiver’s relationships, social connections, lived experience, and values.

Healthcare teams need to consistently ask questions about SOGI and these questions need to be asked in a way that people feel safe. We recognize that this can feel awkward and uncomfortable if it’s new and our hope is that as more people start asking these questions, the more routine they’ll feel and sound, just like all the other demographic questions we ask. How do we ask? We are sharing recommendations from the UK and US (see Appendix 1) [32–33]. When you’re meeting with patients and those they love, think about what information you really need to know. Does the way you frame your question give space for eliciting narratives that may include lots of different types of answers? Imagine if you were transgender and had to answer it. Or if you were with a same-sex partner but not actually married? Of if your family had rejected you? Does your question shut them out, or invite them in? Does it say, “I’m OK with who you are, and who you love. You’re safe here.”

SOGI is a start and bare minimum, but taking more narrative approaches to eliciting patient stories, values, and goals of care is more than asking about SOGI. Rather, it’s changing an approach to make space for everyone to feel welcome and safe by signalizing awareness and eliciting/honoring information needed to deliver person-centered care (best care possible) while also including caregivers and family in safe and meaningful ways [34].

Concluding thoughts

Both our scripts (i.e. ways of talking and listening) and narratives (i.e. the stories we tell about ourselves and our truths, and how we tell them) have been shaped by historical, cultural structures and forces that impact the way patients and providers interact. We can create better scripts that actively resist the limiting effects of normative assumptions and single-story scripts. We can also acknowledge the agency and capability of LGBTQ+ patients and caregivers who develop their own scripts based on their own stories, as strategies for navigating HPEOL communication. We can learn and practice communication skills that make space for patients and caregivers to narrate their truths in ways that promote safety and providers’ authentic curiosity.

Abbreviations

HPEOL

Hospice, palliative, and end of life

LGBTQ+

Lesbian, gay, bisexual, transgender, queer, plus; the plus acknowledges the full range of orientations, gender identities and gender expressions among humans

Authors' contributions

C.C., K.G.C., and J.T. contributed to the writing and editing of the manuscript.

Funding

Funding for this manuscript has been supported by Dr. Candrian’s K01 from the National Institute of Aging (K01AG075141-02). Dr. Tjia was supported by K24 from the National Institute of Aging (K24AG068300).

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.