LGBTQ+ seniors represent a growing population for hospices, but discrimination from health care providers remains a barrier to care. Spiritual care can be an important avenue to bridging gaps to these underserved communities.
Having a more diverse, educated, inclusive and culturally sensitive chaplain staff will be key for hospice providers to engage with these patients, according to a recent report on disruptive disparities from AARP Illinois and SAGE, a services and advocacy group for LGBT elders.
LGBTQ+ seniors are more likely to experience mental and physical health disparities due to the lack of appropriate, inclusive health care, compounded by lifelong experiences of discrimination and social isolation, SAGE researchers found.
“This groundbreaking research is a sobering reminder of how events of the past still play a role in the way LGBTQ adults 50+ live today,” said Mary Anderson, AARP Illinois director of outreach and advocacy for Northern Illinois. “Because of decades of discrimination, LGBTQ older adults fall behind their non-LGBTQ counterparts when it comes to having health care they need, retirement savings, and caregiving support as they age.”
Illinois held a hospice utilization rate of 50.3%% among Medicare decedents in 2018, according to the National Hospice and Palliative Care Organization. This matched the national average that year.
Demographics are fueling a growing need for hospice as the country’s aging population swells. The number of adults 65 and older in the United States reached 52 million in 2018, representing 16% of the country’s population, according to the U.S. Census Bureau. This is up from 35 million in 2000. LGBTQ+ seniors totaled an estimated 1.5 million that same year, SAGE reported.
Last year 15% of LGBTQ+ individuals nationwide indicated that they postponed or avoided medical treatment due to discrimination, according to the Center for American Progress. This includes nearly 3-in-10 transgender individuals.
Older LGBTQ+ adults need help in order to overcome the negative impact discrimination has had on their health, wealth and ability to care for their aging loved ones, according to Anderson. Health care coverage and access to care were among their top priorities, according to the AARP and SAGE disparity report.
These organizations called for equal access and inclusive services that affirmatively support LGBTQ+ adults, as well as more data on their health care experiences and a comprehensive strategy to support this population. Additionally, AARP and SAGE recommended mandatory training for state-funded service providers in Illinois on the needs of these patients.
Nevertheless, gaps exist between policy and actual practice, according to Diane D’Angelo, a hospice chaplain in Denver. Spiritual care is an area in which many LGBTQ+ patients experience abuse, discrimination or are refused certain services, D’Angelo told Hospice News.
“People need to see the same level of support for these patients as we do with other underserved populations. [Chaplaincy] is an area of particular concern where LGBTQ folks are not getting the full range of services they deserve,” said D’Angelo. “Coming to terms with end of life includes a very big spiritual component, and to have someone dying suddenly find out that the person offering spiritual support cannot offer fully support them well is doing an act of violence at the end of someone’s life.”
Hospices need to fill out their ranks to include chaplains with more inclusive and affirming perspectives. Recruiting a cadre of chaplains with different faiths, cultures and traditions can help hospices to better reach LGBTQ+ communities. Education and training for chaplains should include a deeper reflection on the ways patients’ beliefs may impact their own, explained D’Angelo.
“You have an obligation as a chaplain to come up to speed theologically to these patients. There is plenty of training and education out there in cultural humility, but the problem becomes: ‘Are chaplains being hired with that knowledge in mind?’” D’Angelo told Hospice News. The core part of what we do is moral reconciliation with folks. It takes a certain amount of courage on the hospice management’s part to hire people that can accompany LGBTQ dying patients and their families with respect and dignity.”