Why routinely collecting sexual orientation and gender identity information matters for elders
January 2020 | Carey Candrian, PhD
How has your PhD in communication influenced your work?
My degree in communication has been the foundation of my work. It has given me a lens, a vocabulary, and a way to make sense of the things that I see. I think when people hear ‘PhD in communication’, a lot of times it’s, “you must be a really good public speaker,” “you must have great relationships,” or “I bet you don’t have too many misunderstandings.” All those things fall under communication, but under a more linear view of communication concerned with being able to share information effectively. But communication is so much more. Communication is interaction, which encompasses almost every aspect of our lives. If you think of interaction in a scientific way, the way we act has an effect on someone, positive or negative, and our actions can actually change the composition of another’s. Communication is no longer simply a mode of expression, but in fact a series of vocabularies, discourses, and opportunities that are capable of influencing and setting up expectations around how people are able to think, feel and act around serious issues, like health, aging, and death. As I was observing interactions in clinical settings, conducting in-depth interviews with patients, health practitioners, and caregivers, I began to see and feel the ways people are advantaged, disadvantaged, included, excluded, and even silenced during basic interactions. And this happened for many reasons: literacy, illness, pain, age, power, gender, race, ethnicity, sexual orientation, and gender identity. If you can’t freely and openly express who you are, who matters to you, and what you need, how can you receive the care and support that you want?
This was a real turning point for me because I started to see interaction as a site of inequality. With a degree in communication, I felt like I had the knowledge and skills to actually intervene so that our interactions could be more equitable. I knew I could never change someone’s disease trajectory or diagnosis with a degree in communication. But aging and having a serious illness is as much a clinical endeavor as it is a non-clinical endeavor. How well do people understand their illness? How well do people understand their options? How comfortable do people feel to disclose their sexual orientation or gender identity when entering hospice or an assisted living community, and what happens when they don’t? How well are people able to talk openly and freely about their concerns and needs? How well are people able to communicate the importance of having certain people in the room, and not others? All these issues are inherently related to communication and interaction. Things started to connect: I could change how people talked to each other in the context of aging and serious illness. I could effect change on an interaction level so that people were more likely to receive care that aligned with their preferences and allowed them to be who they actually are.
Why the focus on older adults?
I have always been drawn to older adults: their lived experiences, their perspectives, their fragility, their compassion, and their wrinkles. In 2008 I started volunteering at a local hospice every Friday night pushing the hospitality cart full of snacks and beverages into patients’ rooms. Every Friday I thought, do they want to be there? Do they know what it means to be here? Did they have a choice? I would walk in and out of those rooms and think how an entire lifetime all of the sudden becomes reduced to a bed number, a first name, a diagnosis, and an unfamiliar, sterile setting. More recently, I have spent time in assisted living communities. Aging is hard for anyone. Loneliness, boredom, and helplessness is real for everybody. As I was navigating my own coming out, I became increasingly sensitive and concerned about what was happening to my own LGBT community in these settings. Things have changed and are continuing to change, but the older LGBT community is so unique, so disadvantaged, and so invisible. I think it’s challenging for people to really comprehend what it’s actually like to not feel comfortable coming out, not legally allowed depending on the setting, hiding who you are at every breakfast, lunch, and dinner when you’re 75, or having to go back into the closet when you’re 65. That’s a significant amount of pressure and stress – physically, emotionally and mentally.
What influenced your focus on LGBT older adults?
There is no doubt that my own personal experience being a Lesbian directly informs my overall research career and vision around this work. I have landed in this world to do this work, to help the community I am a part of. Every generation of LGBTs has their own histories, their own disparities. The stories from the older generation shatter me. The family abandonment (which still happens), having to go back in the closet, hiding who you are to get care, not being allowed to visit your spouse in the hospital, never being recognized as the wife, or husband, or partner despite being together 30 years, hiding all the time…it upsets me so much and activates me at the same time. I recently participated in this poetry sharing activity through email and someone sent me this from the Talmud, and I love it because it resonates with me doing work with the LGBT community: “Do not be daunted by the enormity of the world’s grief. Do justly, no, love mercy, now. You are not obligated to complete the work, but neither are you free to abandon it.”
The connection around hospice and SOGI grew out of my prior work, my personal motivations, and an interview with a transgender woman in her 60s, who identified as a lesbian, and was living in a mountain town in the Rocky Mountains. She had a complicated relationship with her parents, contemplated suicide a number of times and transitioned into herself a few years ago. She had retired but went back to work part-time to pay some of the medical bills. We were sitting outside her place and talked for an hour. Towards the end of the interview, I asked her what she would hope her experience would be like if she chose to seek hospice or palliative care. She said, “I want to feel equal. I have concerns about hospice and palliative care. I am worried that certain things will be outside my control at that point. Like I still have to shave, for example. I don’t want to have hair on my face. But I have a feeling I am going to be something stuck to somebody’s shoe in that situation. I will be perfectly honest, one of the things I have thought about a lot before I transitioned was I don’t want to die this way. I want to be buried as a woman. I don’t want to be buried as a man. I don’t want a man’s name, I don’t want hair on my face. I have spent a fortune trying to get rid of it but it’s hard to get rid of. And I don’t think I will have trained nurses at the bedside asking me this?” I drove home that afternoon for two hours thinking, how can these interactions be re-designed so patients can tell their full story, be heard, and receive the type of care they want and need?
How can collecting SOGI data improve care for older LGBT adults? Why is this important?
We know health disparities among older LGBT populations are of significant concern. In 2011, the National Academy of Medicine issued a report in reference to LGBT health stating the “existing body of evidence is sparse, and that substantial research is needed.”1 In 2012, Healthy People 2020 identified the health of older LGBT adults as a national priority.2 While it’s great to see this area becoming a priority, there is still a real barrier to actually being able to advance knowledge, evidence, and quality for LGBT older adults due to a hard fact: we don’t have data; we don’t have demographics on LGBT older adults.
Despite directives for SOGI collection since 2011, little work has been done to 1) collect SOGI information in hospice and 2) understand patient preferences for SOGI collection.3-4 Of the work that has been done in the health care system, much has been met with resistance around understanding the need for SOGI data and underestimating the unintended consequences of collecting SOGI information with a historically marginalized population. Disclosing SOGI information to a clinician can be as difficult as disclosing to other people in their lives.5
Hospices, for example, who have historically cared for older adults (94% of hospice enrollees in 2018 were over 65)6 do not routinely collect SOGI data. In addition to its focus on older adults, hospices are important for another reason: A 2018 survey of hospice professionals revealed that LGBT people received discriminatory care.7-8 The magnitude of these disparities has received modest attention due to lack of SOGI data in this population.9-11 Disparities among racial minorities are pretty well documented in hospice and palliative care but we have almost no data on LGBTs in hospice or palliative care.
The lack of SOGI data on older LGBT adults presents a significant challenge not only to developing the science but providing true patient-centered care. If clinicians don’t know some fundamental aspects of a person’s life, how can they possibly provide patient-centered care? It’s incompatible. Routinely collecting SOGI data are essential to ensuring the delivery and evaluation of high-quality, patient-centered care for this population. Without the collection of meaningful and accurate SOGI data, LGBT people will remain invisible and the burden of disease, bereavement, and outcomes they experience may go unnoticed and unaddressed. LGBT disparities can start to be reduced if providers know who among their patients are LGBT. Routine collection of SOGI information is viewed by LGBT patients as a step toward recognition and normalization within society. The EQUALITY study that identified preferred ways of SOGI collection in the emergency department (ED) revealed that 80% of clinicians believe LGBT patients would refuse to provide SOGI information; yet only 10% of patients actually refused.5 The study illuminated that patients are willing to provide this information, especially if done in a patient-centered way.
For LGBT older adults, being asked questions about who they really are and being able to provide this information is a matter of receiving quality person-centered care. Without these basic yet significant demographics, the life story and circumstances of LGBT patients and their caregivers is incomplete. The implications of an incomplete story for providing care that aligns with LGBT patients’ values, wishes, and preferences is significant. SOGI questions are not trivial or an extra add-on, they are a vital data point into the life circumstances of a community of people that have been historically invisible and marginalized. It is a genuine and standardized way to communicate visibility, inclusivity, and care to LGBT older adults and those who care for them.
1. The Health of Lesbian, Gay, Bisexual, and Transgender People – IOM Report: http://www.nationalacademies.org/hmd/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx
2. Healthy People 2020. (2012): https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health
3. U.S. Department of Health and Human Services: Advancing LGBT Health and Well-Being: https://www.hhs.gov/sites/default/files/2016-report-with-cover.pdf
4. Advancing Effective Communication, Cultural Competence, and Patient and Family-Centered Care for the LGBT Community: A field guide from the Joint Commission: https://www.jointcommission.org/assets/1/18/LGBTFieldGuide.pdf
5. Haider AH, Schneider EB, Kodadek LM, et al. Emergency department query for patient-centered approaches to sexual orientation and gender identity: the EQUALITY Study. JAMA Intern Med. 2017;177(6):819-828. doi:10.1001/jamainternmed.2017.0906
6. National Hospice and Palliative Care Organization Facts and Figures 2018: https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf
7. The Stonewall Generation turning to others for care could make them uniquely vulnerable. Washington Post, June 2019: https://www.washingtonpost.com/health/for-the-stonewall-generation-turning-to-others-for-care-could-make-them-uniquely-vulnerable/2019/05/31/cd313748-80b1-11e9-933d-7501070ee669_story.html?utm_term=.37fe89b40cdc
8. Stein GL, Berkman C, O’Mahony S, Godfrey D, Javier NM, Maingi S. Experiences of lesbian, gay, bisexual and transgender patients and families in hospice and palliative care: Perspectives of the palliative care team. J of Palliative Med. 2020; https://doi.org/10.1089/jpm.2019.0542
9. Fredriksen-Goldsen, K. I., Kim, H.-J., Barkan, S. E., Muraco, A., & Hoy-Ellis, C.P. (2013). Health disparities among lesbian, gay, and bisexual older adults: Results from a population-based study. American Journal of Public Health, 103(10), 1802-1809.
10. Maingi, S., Bagabag A.E., O’Mahony, S. (2018). Current best practices for sexual and gender minorities in hospice and palliative care setting. J of Pain and Symptom Management, 55(5): 1420-1427.
11. SAGE Full Report. Out & Visible: The experiences and attitudes of lesbian, gay, bisexual and transgender older adults ages 54-75: https://www.sageusa.org/resource-posts/out-visible-the-experiences-and-attitudes-of-lesbian-gay-bisexual-and-transgender-older-adults-ages-45-75-by-the-numbers-full-report/