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'We Made This Family': End-of-Life Care in the LGBT Community

01/06/2014 03:52 pm ET | Updated Mar 08, 2014

When Eleanor went into a nursing home to receive the care she needed in her final days, she was open about who she was as a lesbian. "You still have time before you die to repent, change your ways and be saved," a Certified Nursing Assistant (CNA) at the nursing home told her.

"People at the end of life are vulnerable," says Earl Collum, a social worker who specializes in end-of-life care and who told me the story of his friend Eleanor. "Often, they have to rely on the kindness of strangers to care for them. How much about your identity do you want to put out there if you're not sure where those strangers are coming from?"

Older Americans who are lesbian, gay, bisexual or transgender often came of age facing severe and even legally sanctioned discrimination and hostility, as Earl notes in a recent article in The Advocate. As LGBT individuals age and eventually need end-of-life care, we must make sure a renewed fear of discrimination does not drive them back into the closet -- and prevent them from getting the health care and support they need and deserve.

Hospice and palliative care workers have an increasingly urgent mandate to discuss, identify and meet the unique end-of-life care needs for an aging LGBT population. Mirroring the aging of the U.S. population as a whole, the number of self-identified LGBT adults age 65 or older is expected to double by 2030 -- from 1.5 million to 3 million, says the National Resource Center on LGBT Aging.

Culturally Sensitive Care
Cultural sensitivity at the end of life is a core tenet of hospice care. Doctors, nurses, social workers, bereavement counselors and trained volunteers must consider a complex set of traditions and beliefs as well as social and familial support systems.

For example, health care teams helping the Navajo in Arizona arrange advance directives for end-of-life care must keep in mind that taboos around death and dying are so deep that a dead person's name is never spoken. Hospice workers in New York's Chinatown are similarly sensitive to Chinese cultural taboos around death. In many religions, the issue of organ donation is fraught and often conflicting.

In the LGBT community, which spans cultures, ethnicities and religions, sensitivities include making sure that the patient is encouraged to be open about his or her identity, including but not limited to sexual orientation and gender identity -- without fear of discrimination or inferior treatment. According to a comprehensive 2011 survey conducted in partnership with SAGE (Services and Advocacy for GLBT Elders) and funded by the National Institutes of Health and the National Institute on Aging, more than one-fifth of LGBT older adults surveyed said they had not reported their sexual orientation or gender identity to their primary physician.

The National Resource Center on LGBT Aging advises health care workers to make sure that all clients have the option and opportunity to disclose their sexual orientation or gender identity (both in person and on paper), but never feel forced to disclose information. The center recommends not making presumptions about identity and asking the question of all clients, so individuals do not feel singled out.

Pointing out that "age and death don't discriminate," the Hospice Foundation of America also offers information to better understand end-of-life needs for the LGBT community. Other helpful resources include "Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide," published by The Joint Commission in 2011.

Who Is Family?
A crucial part of hospice care involves supporting the family during a loved one's final days and the bereavement that follows. Too often, reports the National Resource Center on LGBT Aging, older lesbian, gay, bisexual or transgender individuals, fearing discrimination at the end of life, cover up their closest relationships, including calling a spouse or partner a friend or sibling.

To better honor and support loved ones and understand who to include in decision-making, a culturally sensitive healthcare team can ask simple questions such as "Who do you consider family?" or "Who in your life is especially important?" Having a designated health care proxy in writing underscores who will speak for you if you cannot speak for yourself.

An older LGBT individual may well have spent his or her adult life building families of choice, and may or may not be close to his or her family of origin. When Lou Rispoli lay dying after a savage beating, he was surrounded in the hospital by those who surrounded him in life -- his husband, Danyal Lawson, and thirty close friends. "We both came from broken families," Danyal says. 'We made this family, this huge group of friends who were an incredible source of support."

The health care team's sensitivity to identity -- of individual and family -- can mean the difference between achieving a "good death," in which a person's wishes are followed to the end, and a death that is especially difficult, painful, prolonged or leaves a great deal of unresolved feelings in its wake.

Good Death, Good Grief
The importance of proper end-of-life care resounds beyond the death itself, affecting how loved ones carry on with life during grief and bereavement. In my next post, I will explore how culturally sensitive bereavement support can help avoid complicated grief, which can lead to undue or unmanageable guilt, desperation, depression, isolation and searching behaviors.

Says Danyal, "Love and support, it's what gets you through the difficult times."