Aging, illness, and death do not discriminate, and yet there is a fear of discrimination in receiving hospice and palliative care for LGBTQ seniors and their partners. Grieving partners may not feel comfortable seeking the support that they need and in the final days or months of life, patients may feel isolated or depressed, alienated from health care and aging services, and even forced to cover up his or her identity or support network, thereby missing out on vital aspects of proper end-of-life care. Too many members of the LGBTQ community, especially seniors, face the fear of discrimination in their final days.
This is a real fear. A 2011 study conducted by Services and Advocacy for LGBTQ Elders and funded by the National Institutes of Health and the National Institute on Aging, revealed that 82 percent of the LGBT seniors surveyed said that they had been victimized at least once in their life because of sexual orientation or gender identity. Furthermore, a reported 20 percent of these seniors hadn’t even revealed their preferences to their primary physician for fear of discrimination.
That fear can result in seniors receiving inferior care, delaying the initial effort to seek out care, or feeling the need to cover up who they are and referring to a spouse or partner as a friend or sibling, instead of the true nature of the relationship. At the end of their life, many men and women once again hide their orientation for fear of being mistreated by health care and other professionals.
A partial reason behind this fear may be that the 65-year-old or older lesbian, gay, bisexual, or transgender Americans came out during a time when any sort of homosexuality and gender variance was treated criminally or stigmatized, according to the survey. Furthermore, in addition to coping with a terminal illness, there may be prior rejection from family members and unclear legalities surrounding their relations, which may jeopardize basic rights and protections.
According to the National Resource of LGBTQ Aging, this can lead to higher stressors than heterosexuals and puts these seniors at higher risk “of social isolation, depression and anxiety, poverty, chronic illness, delayed care-seeking, poor nutrition, and premature mortality”. If these risks remain unaddressed in the final days or months of a patient’s life, they resort to covering up their identity and forgo searching for a support network and miss out on proper end-of-life care.
With an expected increase of self-identified LGBTQ adults, age 65 or older, from 1.5 million to 3 million by the year 2030, it has become urgent that proper sensitivity training, and working on creating non-discriminatory policies in a welcome environment needs to start now. There is a serious concern that a significant portion of the population is not accessing the appropriate end-of-life care because of their sexuality or gender identity.
No one should have to hide their orientation out of fear of receiving improper medical, palliative, and hospice care. Educating health care providers toward end-of-life care for members of the LGBT community is one way to provide the proper treatment with dignity and respect, but it can begin sooner on a one-to-one basis at home, nursing facilities, and rehabilitation centers.
The National Hospice and Palliative Care Organization and National Hospice Foundation have recently begun work on including LGBTQ issues into their cultural competencies under the banner of “Rainbow Connection” and many hospice volunteers are now being trained to ensure compassionate care is being given to the LGBTQ community of patients and partners.
To also help further help LGBTQ families, The National Resource Center on LGBT Aging has developed Nine Tips of Finding LGBTQ-Affirming Services as a helpful tool in accessing affirming and supportive care.