Breaking the Silence: Overcoming Healthcare Barriers for Older LGBTQ+ Adults

“This is a choice LGBTQ+ adults face all the time in healthcare: do I come out and risk being treated badly, or do I stay silent and hide a fundamental part of who I am? It’s a heck of a choice,” says Associate Professor Carey Candrian, at the University of Colorado School of Medicine and Health and Aging Policy Fellow.

In a presentation at the University of Minnesota’s Bioethics Grand Rounds, she highlighted the fear, stigma, and communication failures faced by the LGBTQ+ community, discussing the severe barriers to quality healthcare this population endures. “We are in a new era of 'don’t ask, don’t tell' for a lot of people. This silence and fear have historically had an impact on healthcare, and unfortunately, it's getting worse,” says Candrian. For decades, these individuals risked losing their jobs, homes, families, and freedom simply for being who they are.

Historical Toll of Stigma

To understand the current health crisis facing older LGBTQ+ individuals, we must acknowledge the environment in which they were raised. Many grew up in the 1940s, 50s, and 60s, a time when being gay, lesbian, bisexual, or transgender was not only a social taboo but illegal in most states. Until 1973, homosexuality was officially classified as a mental disorder.

“Just imagine growing up thinking that something is wrong with you, that you are sick because you are LGBTQ+," says Candrian. "How much you would have internalized that stigma, and how vulnerable you would be.”

- Carey Candrian, PhD

Borrowing the concept of the “Single Story” from author Chimamanda Ngozi Adichie, Candrian explains how LGBTQ+ individuals have frequently been reduced to one-dimensional, harmful narratives, labeled as deviants or threats. Unfortunately, these narratives have shaped how society thinks and feels about this community. “What’s so powerful and scary about the single story is how it strips away the humanity, the individual faces, and stories of an entire community.” Candrian’s research focuses on breaking open this "single story" to improve the healthcare experience for LGBTQ+ adults, especially those dealing with severe illness or end-of-life care. 

She highlighted three compounding disadvantages that create barriers to healthcare services:

• Discrimination in Care: 56% of LGBTQ+ people report experiencing discrimination from a healthcare provider. That number rises to 70% for transgender or gender non-conforming individuals. Consequently, 40% of older LGBTQ+ adults avoid seeking medical care altogether due to the fear of poor treatment.
• Financial Vulnerability: 1 in 3 LGBTQ+ adults live at or below the poverty line. They are less likely to be married or have children and are more frequently estranged from their biological families due to past rejection, leaving them with fewer financial and caregiving resources.
• A Lifetime of Stigma: Aging without the informal, family-based support networks that many take for granted leaves this population profoundly isolated during their most vulnerable years. “The cumulative toll of that stigma is staggering,” says Candrian.

These are beyond statistics; they are real people. People like Esther and Cathy, who were together for 33 years. When Cathy was repeatedly hospitalized for terminal cancer, the couple noticed that hospital staff began visiting Cathy's room far less frequently after learning they were a couple. Feeling that Cathy's care was being compromised, they made the heartbreaking decision to hide their relationship. Because of this choice, Esther was treated merely as a "good friend" and emergency contact. She was not allowed to advocate for her wife’s medical needs, discuss next steps with the care team, or even hold Cathy's hand. When Cathy passed away, the medical staff offered Esther no condolences for the loss of her spouse. Esther was so traumatized by the experience that she avoided healthcare for over a year. 

The story of Esther and Cathy serves as a stark reminder that discriminatory actions and environments directly impact care and decision-making.

In healthcare settings, this history manifests as a "habit of silence." Over the last decade, Candrian has conducted over 200 qualitative interviews with older LGBTQ+ adults about their healthcare experiences. The data revealed a strong connection between communication and health disparities and outcomes. 

Towards Inclusive and Respectful Care

To change these outcomes, we must break the scripts that perpetuate inequality. Discrimination in healthcare often originates in basic documentation and intake processes, ultimately leading to disparities in health outcomes. The single most impactful change we can make in healthcare is improving our communication. “What if, to start breaking some of these scripts, we just started asking, 'Do you live with anyone? Who's the biggest support in your life? Who do you want with you when we talk about your care?” says Candrian. "It's not only about getting the information but using language that opens up the conversation and takes the limits off the way people can respond, so they can answer in a way that actually fits their life. These subtle changes to some of our basic questions can actually make a huge difference for people who are LGBTQ+.” Communication matters, and the healthcare industry must recognize its power. From written forms to bedside conversations, we can improve our language to demonstrate that we are truly welcoming to LGBTQ+ patients.

"Every LGBTQ+ person I've met in my research is not asking for a lot; they just want to be able to talk openly and be heard without prejudice."

- Carey Candrian, PhD

For a community that has spent decades learning that silence is the only safe option, that is not a small ask. But it is one that every healthcare provider, caregiver, family member, and community institution can answer.