By Gabrielle Kassel
According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.
Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.
Death doula, defined
Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.
The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.
While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.
How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces
Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.
For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.
In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.
Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.
In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.
Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family
In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)
Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.
That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.
For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.
Why death doulas for the queer community need to be queer or queer-informed
Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.
As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”
It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.
To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.
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