For LGBTQ Community, Ending the Silence Could Enhance Their Lives – and Deaths

In her second year on the job at the University of Colorado Anschutz Medical Campus, Carey Candrian, PhD, was shadowing a hospice admissions nurse as she interviewed a dying woman in the patient’s home.

Another woman stood quietly by, as the nurse ticked off scripted questions from a lengthy form aimed at discovering a potential hospice patient’s wants, needs and support system. Candrian’s interest was piqued by the number of times the patient answered “no.”

Are you married? No. Do you have children? No. Do you have grandchildren? No.

Finally, when the nurse asked who helped her with doctor appointments, the patient gestured toward the woman in the corner. Then the nurse left.

See June’s Pride Month Events

Candrian, a social scientist focused on end-of-life communication, stayed for her own interview with the patient in what turned out to be a defining moment in her career.

After learning the woman in the corner was the most important person in the patient’s life – her partner of 21 years, her healthcare advocate, her medical power of attorney – Candrian found her calling.

Today, as an assistant professor of health communication in the University of Colorado School of Medicine, Candrian works on improving the end-of-life experience for all patients – but with a rare focus on her fellow Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ) community members.

She recently shared more about her career passion and goals with CU Anschutz Today. The interview has been edited for brevity and clarity.

Why did the shadowing scenario affect you so deeply?

I connected personally and professionally. If you can’t openly express who and what matters to you, especially at the end of life, that has huge health consequences and really can affect mental, emotional and physical outcomes. These conversations need to be done in a way that make people feel they can openly express who they are and who they need.

How would you describe the scope of the problem?

It’s big. One thing that I think is most problematic for the older LGBTQ generation is that they grew up when being LGBTQ was highly stigmatized. It was dangerous. It was illegal to be out. And so many of them really had to stay silent about this fact, because it meant that they could have lost their jobs. They may have been rejected by their family and friends. Their housing and medical care might have been denied. This was like a survival strategy to stay quiet. Of the estimated 2.4 million LGBTQ seniors in the United States, 48% have not revealed their sexual-orientation or gender identity to their doctors.

What are some of the healthcare dangers of not coming out?

Research is slowly starting to show the amount of trauma in the LGBTQ community, which does have health consequences. Trauma can be having to sustain extended stress, like hiding one’s identity. It could also mean experiencing something scary in isolation without an empathetic witness to validate or help us understand the experience. This often happens with losing a partner and not being able to be fully acknowledged, which translates to disenfranchised grief – when a loss cannot be socially accepted or validated.

Mental healthcare is another area my data show as particularly problematic. If you can’t disclose why you are having feelings of depression or isolation, you can’t actually get help. You get sort of this wicked cycle. Suicide rates are astronomical, particularly for the transgender community.

What else can LGBTQ silence perpetuate?

Another big issue that we are finally starting to recognize is that we don’t have great data on the LGBTQ community, because we don’t routinely ask sexual-orientation and gender-identity (SOGI) questions like we do race and ethnicity. And if these questions are required, they are often not rolled out with rigorous training, education and awareness around how and why to ask these questions, given the historical discrimination faced by the LGBTQ community. Which means we are asking – even unconsciously – these questions in a way that might perpetuate these feelings of stigma and discrimination. To be able to meaningfully address these disparities on any sort of level is extremely difficult, because we don’t have robust data, comprehensive registries or databases that routinely include LGBTQ communities.

How would you describe the amount of LGBTQ-focused clinical research?

From a funding perspective, a lot has been focused on HIV. But there’s still very little research being done, primarily because it remains a very hidden population. And it’s a difficult population to study, because they’ve had historical mistrust with the healthcare system. That is why a lot of my work has become primarily community-based. It’s a way to gain trust and show that we want their lives to be better.

What are some examples of that work in the community?

Right now, we have a project we are working on with Christian Living Communities (for seniors). We are training staff at six of their locations, which will be 860 staff members, to become more competent and inclusive in caring for their LGBTQ residents. It’s been really a cultural-change project. We are creating a video about opening hearts and minds and just letting people know that one, you have these residents living in your communities, and two, here are ways to treat them so they feel safe and can thrive.

We’ve also started a grief group for the LGBTQ community, which did not exist in Colorado, believe it or not, until now. They don’t exist in a lot of places. There are very few bereavement or grief resources that are specifically designed for LGBTQ communities.

What do you do on the teaching side at CU Anschutz?

I direct the communication curriculum in the Master of Science and Palliative Care program. It’s not specifically LGBTQ-focused, although we are very intentional about the relationship between interaction and inequality. There is definitely an undercurrent of social justice in all of our content, readings and cases, so learners that come through the communication portion of the program are developing and practicing communication skills with patients and caregivers from diverse communities and life experiences. The overall angle is for students, who are allied health professionals, physicians, nurses, social workers and even chaplains, to become competent, adaptable and eventually artful in the way they communicate and design interactions.

Does being a part of the LGBTQ community influence your work in any way?

Yeah, I think it does a lot. I see myself in everything I do, and it’s a huge motivation for doing this. Although I’m not part of the older generation, I have felt the effects of the hiding and the silence and the stigma and know how that can magnify in the context of healthcare, especially at the end of life. I think it also has been a way for me to use my research to advocate and hopefully create a world we all would eventually like to live in, a world that is a little bit kinder and a little bit more supportive of people who are different.