Carey Candrian, PhD, associate professor of medicine at the University of Colorado School of Medicine, has received a five-year award from the NIH’s National Institute on Aging to develop a novel intervention to improve care for sexual and gender minority older adults in hospice.
With the award, Candrian will design and implement training for hospice staff that promotes whole-person centered communications and includes collecting sexual orientation and gender identity information.
Failure to collect and integrate sexual orientation and gender information data has adverse health consequences for sexual and gender minority older adults, and as a result, they are at risk of receiving inequitable end-of-life care.
Promoting authentic end-of-life care
Collecting representative and inclusive data about sexual orientation and gender identity promotes authentic end-of-life care and can be used to combat health disparities that can lead to devastating outcomes for sexual and gender minority older adults.
“Collecting this information is long overdue,” says Candrian. “It is equally important to pay attention to how the information is collected: the way these questions are asked, when they are asked, how they are asked, what people do with the information, and how knowing this information allows people to provide better care to LGBTQ patients. The communication piece is what I’m focusing on, so that these questions hopefully become routine, just like asking about race, age, and ethnicity.”
Sexual and gender minority older adults face discrimination throughout their lives, and the resulting stress can reduce life expectancy by as much as 12 years, according to a recent study. Discrimination continues through end-of-life care. In 2020, 43% of hospice providers said they witnessed discriminatory behavior toward sexual and gender minority patients or caregivers, including disregard of patient wishes. In 2021, the American Heart Association reported that 56% of sexual and gender minority adults experienced discriminatory from a health care provider; the number jumps to 70% for those who are trans or gender non-conforming.
Improving care and reducing disparities
Including sexual orientation and gender identity information in medical records and treatment plans creates opportunities for improving care delivery and reducing disparities. The data will also improve measurement and recognition. The National Academy of Medicine, the Joint Commission, and Healthy People 2030 recommend asking sexual orientation and gender identity questions to document specific health needs and addressing health disparities affecting sexual and gender minority older adults.
To date, routinely collecting sexual orientation and gender identity information as a core demographic variable is the exception across the care continuum. The lack of data exacerbates the hidden needs of sexual and gender minority patients and perpetuates disparities.
“For too long, older LGBTQ+ people have been invisible to health and aging providers, even when we were right in front them,” says Sherrill Wayland, director of special initiatives at SAGE, Advocacy & Services for LGBTQ+ Elders. “This invisibility was largely fueled by a lack of data collection on sexual orientation and gender identity. Inclusive data collection helps ensure that LGBTQ+ people are seen and supported by the health and aging network.”
Recommendations are available for the questions to ask to collect sexual orientation and gender identity information, but they have not been systematically implemented and evaluated within end-of-life settings. Understanding the optimal way to collect this information is being addressed in primary care and emergency department settings but remains unstudied in end-of-life care.
Current guidelines are insufficient because they do not recognize the difficulty in collecting sexual orientation and gender identity information from patients who have faced discrimination throughout their lives. Proper training ensures safe and inclusive data collection while eliminating unintended risks of perpetuating discriminatory behaviors.
“It is what can be considered a wicked communication problem: on the one hand, there is documented discrimination in health care, and on the other, you have an entire population who have been trained to stay silent about who they are, so they stay safe,” Candrian says. “And it’s all happening in a health care system that doesn’t leave a lot of time and space for people to share this critical information. There’s a reason this data is still not routinely collected even though the Joint Commission has been asking for it since 2011. Discrimination is real. We can’t just tell people to collect these data without proper education and training.”