According to a survey of 1,528 LGBTQ+ people conducted by the Center for American Progress in 2020 on the state of the LGBTQ+ community, more than one in ten LGBTQ+ people say they have been mistreated by a health-care provider, and 15% say they have delayed or avoided medical care as a result of such discrimination. And the number of trans people who have had to teach their providers about their gender identity in order to receive appropriate care is even higher, with 33% saying they’ve had to teach their providers about their gender identity in order to receive appropriate care and 38% saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.
Queer people have historically had to bear the duty of teaching others while still facing discrimination in health-care settings, even in their dying days. However, with the advent of death doulas entering the end-of-life-care sector to assist persons who are dying in making the transition, this has begun to change in recent years. Such care is especially important for members of marginalised communities, such as LGBTQ+ people.
A death doula is a person who helps people who are dying.
A death doula, also known as a death midwife, transition guide, end-of-life assistant, or end-of-life-doula, is a professional who assists the dying (and their loved ones) in the same way that a birth doula assists a new parent (and their loved ones). “A death doula is a holistic caregiver that provides non-medical, non-judgmental support to persons who are dying as well as their loved ones,” explains Tracey Walker, a lesbian death doula and death-work activist who sits on the National End of Life Doula Alliance board of directors (NEDA). While death doulas can aid everyone through this difficult time, they are especially beneficial to members of marginalised populations, just as birth doulas are. Dying members of the LGBTQ+ community, in particular, will benefit in a variety of ways.
A death doula’s support—whether logistical, emotional, physical, spiritual, or a combination of these—varies depending on the death doula and the client’s needs and desires. “Some death doulas primarily handle paperwork related to advance directives, while others serve as liaisons between doctors, patients, and their families,” Walker explains. Doing home tasks, holding vigil, sorting possessions, writing letters to living loved ones, planning the burial, and offering the comfort of having encountered death before are all examples of death doula work.
While the dying person and their loved ones can often recognise the benefits of a death doula’s services without it, these chores can be emotionally (and possibly physically) draining, thus outsourcing can be beneficial for those who have access to such services. To put this in context, Walker writes that “most people could cut their own—or a family member’s—hair but chose to delegate the chore out.” People may opt to outsource certain responsibilities to a death doula in this spirit, Walker adds, in order to free up space and energy to be there for the person passing in their final days, weeks, or months together.
How death doulas may help queer patients in health-care settings overcome queerphobia and queermisia
According to sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast, death doulas are neither nurses or doctors, but they can take on the emotional labour and mental energy connected with educating health-care providers about their patients’ positionality. And that’s significant, given the long history of gay people in health-care settings being ignored and discriminated against (also known as queermisia).
The desire to avoid medical care in order to avoid discrimination and stigma is likely to be even greater for LGBTQ+ elders 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), who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed
Queer patients want champions in times of need, which is where death doulas for end-of-life care may help.
Moreover, despite estimates that more than 5% of the US population is LGBTQ+ (almost three times the number of red-headed persons), research has indicated that just 39% of doctors believe they have sufficient understanding to handle queer patients’ special health requirements. In short, the health-care industry has largely perpetuated transphobia, biphobia, and homophobia, and it continues to do so. Queer patients also require advocates in times of need, which is where queer-informed death doulas may help with end-of-life care.
Queer-informed death doulas can ensure that providers respect and affirm queer patients’ pronouns, as well as treating their partners as partners—rather than siblings or strangers, for example—in addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to.
Death doulas can assist with end-of-life transitions that don’t put the nuclear family first.
Death is viewed as a family-centric transition in many cultures, with the dying surrounded by their children and relatives. Sloane explains, “But [that idea] assumes that someone’s biological family is a stable and supportive structure in their lives.” That is just not the case for many queer people, as research from 2013 shows that 39% of LGBTQ+ people have been rejected or disowned by their biological family members at some time in their lives. (While society has progressed in its acceptance of the LGTBQ+ community in the last eight years, the percentage still isn’t zero.)
In addition, because of a mix of biological characteristics, as well as legislation and socioeconomic barriers, LGBTQ+ persons are less likely to have children, and LGBTQ+ elders are also more likely to be single than heterosexuals, according to Walker. Because of these reasons, LGBTQ+ people are less likely to have biological or legal family members to support them during end-of-life care, necessitating the use of a queer-informed death doula.
That isn’t to suggest gay individuals don’t have loved ones or families; many have chosen families comprised of people of all ages with whom they share queer platonic, romantic, or sexual love. “These non-traditional family members will be treated as family members by a queer-inclusive and queer-informed death doula,” Sloane explains.
Someone who is ethically non-monogamous, for example, may have two or three equally important partners, but only one of whom they are wedded to, according to Sloane. Unlike standard medical settings, when only the (legal) spouse is valued and information is shared, the death doula can value all partners equally.
Why are queer death doulas required to be queer or queer-informed?
For members of the gay community, not just anyone can be an effective death doula. Because we all have unconscious prejudices that impact our perspective and the care we provide, this is true. “Having a queer death doula can be reassuring for queer individuals “Because it ensures that the death doula will not bring in internalised or externalised bigotry against queer people, Sloane says. A queer death doula may also be more aware of asking for a person’s pronouns and avoiding the task of code-switching, or alternating patterns, gestures, and expressions.
As a newcomer to LGBT places, I’m curious about what it’s like to be on the “A non-queer death doula will have to ask questions that only a queer person would know the answers to because of their lived experiences as a queer person,” Sloane continues. Consider the fact that in some cultures, it is customary to bathe a deceased person before burial. “A queer doula may be more aware of this and, as a result, ask questions such, ‘Do you want your body washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane explains. “A gender non-conforming individual may not want their unclothed body to be seen by any family member or acquaintance, other than the lover,” she adds, so these questions are crucial.
It’s worth noting that not all excellent doulas for gay people must be themselves queer. Queer-informed doulas—that is, doulas who have received sensitivity training and are familiar with the discriminations, needs, wants, and wishes of LGBTQ+ people—can also be beneficial. According to Sloane, “queer-informed and queer death doulas often mention as much in their social media marketing and webpage, and talk about specialised in LGBTQ+ elders.”
Check out the Gay and Lesbian Medical Association’s provider list or call your local LGBTQ+ centre to find a queer-informed or LGBTQ+ death doula. Finally, queer-informed death doulas can be a valuable complement to an LGBTQ+ person’s end-of-life care team, allowing them and their loved ones to be present with the time they have left.
Hello everyone! You appear to enjoy free workouts, savings on cutting-edge wellness items, and access to unique Well+Good content. Sign up for Well+, our online network of wellness insiders, and you’ll have quick access to your rewards.