In a country where most elder care is left to family, many LGBTQ people are estranged from relatives and don't have that option. Turning to others for care makes them uniquely vulnerable.
This article was published May 22, 2019, by Kaiser Health News.
Two years ago, nursing professor Kim Acquaviva asked a group of home care nurses whether they thought she was going to hell for being a lesbian. It's OK if you do, Acquaviva said, but is the afterlife within your scope of practice?
After Acquaviva's talk, an older nurse announced she would change how she treats LGBTQ people under her care.
"I still think you're going to hell, but I'm going to stop telling patients that," the nurse told Acquaviva.
Acquaviva, a professor at the George Washington University School of Nursing in Washington, D.C., raised the example Tuesday at a panel hosted by Kaiser Health News on inclusive care for LGBTQ seniors. It was one of many examples of discrimination that these older adults may face as they seek medical care.
LGBTQ baby boomers, dubbed "the Stonewall Generation," came of age just as the 1969 New York uprising galvanized a push for gay rights. After living through an era of unprecedented social change, they're facing new challenges as they grow old.
"Fifty years after Stonewall, there's a new generation of LGBT elders who never thought they'd get an AARP card," said Nii-Quartelai-Quartey, AARP's senior adviser and national liaison on the issue who also participated in Tuesday's panel.
By 2030, there will be an estimated 7 million LGBT people in America over 50. About 4.7 million of them will need elder care and services, according to SAGE, an advocacy group.
In a country where most elder care is left to family, many LGBTQ people are estranged from relatives and don't have that option. Turning to others for care—in assisted living centers, nursing homes or hospice settings—makes them uniquely vulnerable.
"The fear of living in a situation where they can't advocate for their own care and safety is terrifying," said Hilary Meyer, chief enterprise and innovation officer for SAGE.
Three-quarters of LGBT people are worried about having adequate family or social supports, according to a nationally representative survey of AARP members released last year.
More than a third are concerned they'll have to hide their identity to find suitable housing as they age. And at least 60% are concerned about neglect, harassment and abuse, the survey showed.
Often, those fears are founded, according to results of a forthcoming survey of more than 850 hospice and palliative care providers about LGBT patients and family experiences.
"I think the information we've got is actually quite discouraging and quite concerning," said Gary Stein, a professor at the Wurzweiler School of Social Work at Yeshiva University who co-led the project.
Most providers surveyed said LGBT people received discriminatory care, he said. For transgender patients, two-thirds said that was true.
Caregivers reported hundreds of examples of disrespectful treatment, Stein said.
When LGBT couples would hold hands, staff "might roll their eyes, make faces at each other," he said. They often failed to consult the patients' partners, directing questions to biological family members instead.
In several instances, staff would "try to pray" to the patient or their family, Stein said.
Some LGBT patients were left in soiled diapers or rationed pain medication in a "punishing way" because of their sexual identity, he added.
"For transgender patients, there was lots of discomfort around what to call the person," Stein said. "A number of people said patients were called 'it' instead of a pronoun."
Twenty states have laws that specifically protect LGBT people against discrimination, but most don't, Stein noted. A recently enacted Trump administration "conscience rule" allows providers to decline to provide care that goes against their moral or spiritual beliefs. Advocates said the new rule could make it easier to discriminate against LGBTQ people.
Still, a growing number of senior housing and care sites are putting non-discrimination policies in place and training personnel to provide LGBTQ-inclusive care.
The SAGE staff has trained more than 50,000 people at more than 300 sites nationwide, Meyer said. They learn best practices for asking questions that don't perpetuate stigma.
"It's even something as simple as asking somebody, a woman, if her husband will be visiting," said Meyer, noting that the question forces the person to decide whether to announce her sexual identity. "Having to come out of the closet that way can be very challenging."
In a few high-profile instances, LGBTQ couples or individuals have sued providers for discrimination.
In 2016, Lambda Legal, a gay advocacy group, sued an Illinois senior residential facility for failing to protect Marsha Wetzel, 70, a disabled lesbian, from harassment and violence by other residents. The 7th Circuit Court of Appeals ruled that a landlord may be held liable under the Fair Housing Act for failing to protect a tenant from known, discriminatory harassment by other tenants.
Karen Loewy, Wetzel's attorney, would say only that "the matter has been resolved," and Wetzel is now living at a Chicago-area facility.
Last summer, in Missouri, a married lesbian couple, Mary Walsh, 73, and Bev Nance, 69, sued a senior-living facility that denied their housing application. The Friendship Village assisted living center cited a "cohabitation policy" that defines marriage as between one man and one woman as the reason.
A U.S. district judge dismissed the suit in January, saying that their claims of discrimination were "based on sexual orientation rather than sex alone." The distinction is important because neither federal nor state laws explicitly prohibit discrimination based on sexual orientation. The suit has been stayed pending Supreme Court decisions that could affect the outcome.
In the meantime, the couple has remained in their single-family home, where Walsh has developed health problems, said their lawyer, Julie Wilensky of the National Center for Lesbian Rights.
"They wanted to be planning in advance so that they would have stability when issues might come up in the future," Wilensky said.
Not every LGBTQ person will want to step forward in the way Wetzel, Walsh and Nance have, said Loewy.
"When you feel like you're being denied care … you may not want to be out there to wave the banner," she said.
Finding an LGBTQ-tolerant facility can be difficult. People are often bound by geography, and options are limited.
Still, LGBT people and their families can—and should—have candid conversations with potential caregivers before they make a choice, Loewy said.
One key question: Ask what kind of experience staff have working with LGBTQ people.
"If they say they haven't [treated any such patients], don't believe them," Loewy said. "You want to hear a real clear commitment to ensuring every resident of this facility is going to be treated with dignity."
Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.