By Holly Vossel
The AIDS epidemic coincided with the birth of the hospice movement roughly four decades ago, carrying groundbreaking impacts on end-of-life care delivery for LGBTQ+ communities and beyond.
Gay, lesbian, bisexual and transgender individuals were among the most severely impacted by the AIDS outbreak in the 1980s. LGBTQ+ communities died at higher rates from 1980 to 1991 than any other population, according to the U.S. Centers for Disease Control and Prevention (CDC).
In 1983, the Medicare Hospice Benefit was established. Hospices were among the few health care providers offering quality services to LGBTQ+ patients dying of AIDS at the time, according to California-based YoloCares CEO Craig Dresang.
“In the 1980s people were terrified of anyone who had AIDS. It was a scary time,” Dresang told Hospice News. “Hospice nurses approached care very differently compared to the rest of the health care world, because it was about connecting as human beings and making yourself vulnerable for the betterment of the person who is sick.”
Misperceptions and mistreatment of the LGBTQ+ community ran rampant, while fear and mistrust of the health care system fueled disparities among this population, Dresang said. Additionally, not much was known about the risks of contracting the human immunodeficiency virus (HIV), which can lead to AIDS, causing apprehension among health care providers treating these individuals, he added.
In many cases, LGBTQ+ patients with HIV or AIDS were typically separated from other populations in a health care facility or hospital setting, with some placed in inhumane conditions, Dresang said. LGBTQ+ communities were often even more vulnerable to isolation during the final days of life, mainly due to prolific stigmas and stereotypes among family and friends, he added.
First recognized as as illness in 1981, AIDS became one of the leading causes of death among young adults young adults 25–44 years old in the United States by 1988, outranking heart disease, cancer, homicide and suicide rates that year, reported the CDC. More than half (59%) of AIDS-related deaths occurred among homosexual and bisexual male populations, according to the CDC.
The AIDS epidemic in part helped to illuminate hospice’s value as it emerged into the realm of interdisciplinary health care, Dresang said. The outbreak also had a lasting effect on shaping person-centered care delivery approaches, he added.
“The AIDS epidemic really advanced the hospice movement in this country, because many health care workers were afraid to take care of these people,” Dresang said. “But this was core to the hospice philosophy of care to deliver on compassion, dignity, respect and guide them through this journey. Years later when more was understood about AIDS and HIV, hospice had already done this groundbreaking work in caring for these people that led to better understanding and awareness of this care.”
The AIDS epidemic really advanced the hospice movement in this country, because many health care workers were afraid to take care of these people. But this was core to the hospice philosophy of care to deliver on compassion, dignity, respect and guide them through this journey.
— Craig Dresang, CEO, YoloCares
Demographics are driving demand for hospice among individuals with HIV and AIDS, with seniors 50 and older representing roughly half of this population currently nationwide, according to research published in the journal Nursing Clinics of North America. Improved hospice access and utilization is needed with the growing prevalence of HIV and AIDS among older populations, researchers stated.
Despite progress over the years, gaps remain in gender-affirmative hospice care delivery for LGBTQ+ patients with AIDS, according to Jerry Farmer, vice president of diversity, equity and inclusion at Dallas-headquartered AccentCare.
More inclusive and diverse staff training efforts are needed to improve quality for these patient populations who often have more complex psychosocial, behavioral health and medical care needs compared to others, Farmer said. Hospices must also ensure that staff are educated on the specific symptoms associated with AIDS and ways to address these as patients reach the end of life, he stated.
“LGBTQ+ hospice patients often have unique needs and considerations that can differ significantly from those of other patients,” Farmer told Hospice News in an email. “[Hospice] teams must be aware of the specific health issues more prevalent in LGBTQ+ populations, such as HIV/AIDS and provide competent care that addresses the intersection of chronic illness and palliative needs. By addressing these unique needs, providers can offer more compassionate, respectful and effective care for LGBTQ+ patients at the end of life.”
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