Exploring Inequality At End-of-Life for the LGBT Community

Exploring Inequality At End-of-Life for the LGBT Community

June 25, 2019


What a community facing discrimination can teach us all about the importance of ending well

In recognition of Pride this month, the End Well team invites us to explore the unique challenges LGBT seniors face in care and end-of-life treatment. With an estimated 2.4 million people who identify as lesbian, gay, bisexual or transgender over the age of 65, according to the American Psychological Association, LGBT seniors will face greater obstacles in caregiving support and health care delivery. Some known disparities include:

  • Poor mental and physical health due to a lifetime of stress associated with being part of a marginalized group
  • Discrimination due to sexual orientation, gender identity, and age
  • Greater risk of social isolation

From housing to health care, these inequalities permeate many aspects of aging and the end-of-life experience for the LGBT community. From those in the End Well community, we are learning these inequalities are especially prevalent for minority LGBT seniors.

Identifying provider bias and discrimination

Provider beliefs shape their treatment of LGBT patients. These implicit biases can prevent older, LGBT adults from getting the care they need. Of those surveyed by Sage, nine percent reported that they had a physician used harsh or abusive language while treating them. Among transgender people, this number was even higher.

The current language used to describe gender and sexuality in health care settings can create, at best, fractured communication between LGBT patients and physicians. In a helpful series of tweets, Dr. E. Kale Edmiston explains the dangers of trying to define patients based on marital status and gender identity alone.


Gender binary language reinforces stereotypes medical professionals have about the LGBT community and can estrange people from seeking care. To counter these biases and provide more inclusive care, physicians are encouraged to ask LGBT patients how they describe themselves.

Learning from LGBT caregivers

A survey conducted by the Williams Institute found that only 29 percent of the current LGBT population are raising children. No matter a person’s sexual identity, the caregiving support of a family member is never guaranteed. However, for childless LGBT seniors and those with fractured family relationships, finding support can often intensify illnesses such as anxiety. In the words of 68-year-old Paul Glass: “When we get older and we have to depend on others, how will we be treated?”

“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.”

Continue reading from Kaiser Health News

America’s current family caregiving structure is based on a heteronormative construct — where biological children or grandchildren are encouraged to take care of parents as they age. In other cultures this structure is expected, increasing the stress of LGBT seniors exponentially. With LGBT seniors twice as likely to age alone, this community will rely even more on the care and support of friends, neighbors and coworkers — a trend known as “horizontal caregiving.”

“Older gays and lesbians can’t always depend on close relatives as caregivers. The report found that LGBTQ seniors were three to four times less likely to have children than their heterosexual peers. But many have developed strong ‘peer-to-peer’ networks, sharing holidays and checking on each other, especially those who live far from where they grew up or who are estranged from their relatives.”

Continue reading from Boston Globe

Photo by The Gender Spectrum Collection

Over half of LGBT older adults surveyed by AARP have concerns over housing discrimination. Faced with this reality, seniors fear having to re-closet themselves. And while the majority of LGBT older adults have expressed a need for long-term care facilities that are culturally competent, options are limited based on location and cost. Depending on the community, seniors have reported exposure to bullying and abuse from homophobic staff and other residents.

“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.”

Continue reading from Kaiser Health News.

Care done better

There are still too few that welcome those disenfranchised from the health care system out of fear of discrimination. The result is LGBT seniors who are less likely to seek preventative care, which puts this community at an even greater risk of developing health problems. And because they’re more likely to age alone, it can be difficult to find someone — let alone a trusted source — to share end-of-life concerns and plans.

“Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.”

Continue reading from Diverse Elders Coalition

As we all explore what it means to end well, it’s important to learn from communities that have been discriminated against. Taking into consideration the spaces that can become more dignified and inclusive as we age only helps all of us working to create a system based on comprehensive care until the very end.

Do you have a story related to this topic you’d like to share or additional insights the greater End Well community would appreciate? Let us know in the comments below or reach out at hello@endwellproject.org.

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