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What If Death Care Were Designed for Trans and Nonbinary People?

by Nix Kelley and Isabel Knight

What If Death Care Were Designed for Trans and Nonbinary People?

As organizations across different industries work to create more inclusive environments, it helps to think about who our current systems were designed to serve and imagine the alternate universes that we’d be living in if those systems had been designed differently. In human-centered design, this practice is called “alternative worlds,” and earlier this summer, we conducted a workshop to address the question of what our death care system would look like if it had been designed with trans and nonbinary folk in mind.

Too often, when we take a macroscale view of how to design a system, we default to designing products and services for the “average” person. A human-centered practice instead proposes that designing for the most vulnerable individuals can be more beneficial to  everyone.

During the workshop we identified common harmful themes in end-of-life care for trans and nonbinary people. Below we have articulated these themes and provided some possible actions to take toward becoming a trans-affirming world in the end-of-life arena.   

Deadnaming

One common issue in the trans death care realm is the practice of “deadnaming.” This act of calling a trans person by the name they used before they transitioned instead of by their chosen name can be traumatic and invalidating. Post-death, deadnaming can occur when a trans person’s estranged family is legally in charge of their funeral and chooses not to respect the transition or wishes of the trans person. On the flip side, sometimes queer individuals don’t want their family or peers to know they were trans and wind up being outed nonconsensually in death. 

It may also be difficult to match up legal paperwork, such as a death certificate and birth certificate, if the person did not go through a legal name change. Even when people choose to change their name legally, they are often met with barriers. This process differs state to state, and something like a passport name change is often left to the discretion of the government worker processing that paperwork. There are instances in which trans people have had their identity documents questioned even when they were able to officially change them. 

Renowned mortician Caitlin Doughty has discussed some of the challenges in end-of-life care for trans people. According to Caitlin, it is up to individual funeral directors to choose how they care for the body of a trans person. In situations where that care is legally assigned to someone by that trans person, it is more likely that their wishes, including their grave marker and obituary details, will be respected.

From a doula support perspective, the main thing to note is that in public-facing references to the deceased, such as on a gravestone or in an obituary, there is no requirement that the name match legal paperwork such as a passport or driver’s license. This is an area where a doula can take on the bulk of advocacy, easing the emotional burden on the friends and family of the deceased. 

As doulas, we are not just support for the dying; we are also supporting their grieving loved ones after their death. In a situation where someone is misidentified by their funeral presentation, grave marker, or obituary, the grief is compounded by these harms toward the LGBTQIA2S+ community as a whole. This has a cascading effect, causing fewer trans people to trust their end-of-life care to anyone other than their chosen family and loved ones. We as doulas want to gain the trust of the communities we serve, and to do that it is important to listen to that community and what they need in end-of-life care.

What the trans-affirming world looks like: Everyone checks to make sure that the name used in references to the deceased matches what their pre-death preferences were. This not only helps queer people, but ensures everyone has their documented requirements respected, regardless of gender!

  • An even more ideal vision: A world in which name changes are easier and we have fewer discrepancies in legal documentation to begin with. For example, New York just passed the Gender Recognition Act, making it easier for trans people to update legal documents. One way you can help trans folk is by looking up the name-change process in your state, and if it is cumbersome, helping lobby in your state to make it easier!

Legal Documentation

Another common legal issue for trans individuals is ensuring their end-of-life wishes are honored through their legal documents such as advance directives, living wills, and health care proxies. Without these documents written and accessible, states will default to giving legal rights for health care decisions to a person’s next of kin. Many trans people have been estranged from their families over their queerness, making next of kin an inappropriate person to make medical decisions. Establishing that post-death paperwork is in order and carried out by a designated executor will contribute to the fulfillment of the deceased’s wishes.

Luckily, the process of designating these agents might actually be easier than the laborious legal processes many queer people have come to expect as the norm. Sources such as Cake and Lantern can be useful for helping anyone, not just trans and nonbinary folk, write up these documents for themselves. You can support your clients by helping them fill out these documents and assisting them in deciding who they want to be their healthcare proxy, funeral agent, etc. When possible, end-of-life preparations for a trans person should include clear instructions for personal visits, dying rituals, and how they wish to be memorialized.

What the trans-affirming world looks like: Everyone creates their advance care planning documents, such as their advance directive, will, funeral agent designation, and health care proxy, if desired. Everyone can choose an executor of their will and power of attorney and health care proxy who respects their wishes. In cases where third-party agents are assigned by the state, those agents are educated in queer-affirming practices.

Gendered Medical and Death Care Services

Medical spaces are often gendered, and many trans individuals wind up needing to closet themselves in order to access the health care they need due to a lack of trans-affirming doctors, nurses, insurance providers, and other medical professionals. This can make it difficult to get medical care and to ensure their after-death wishes are met. Traditional cemeteries and funeral homes may struggle with non-cis pronouns, and many death products, such as funeral products, memorial sites, and obituaries, are often gendered as well. 

What the trans-affirming world looks like: Medical professionals, hospice workers, and doulas have greater awareness around trans health care and end-of-life care, and they don’t make assumptions around gender in any scenario. One thing you can do to help make this world a reality is ask your local hospice and hospital what their policies are around gender-affirming care and work with your community to encourage these organizations to seek training and create more gender-affirming policies and practices.

Trauma-Informed Death Care

We live in a world where transgender individuals are far more likely to die an early, violent death compared with the average person, and 2021 is on track to be the deadliest year on record for trans individuals (the anti-trans homicide rate has tripled in the last year). 

Not only does this mean that many trans individuals do not expect to live to old age, creating a gap in age-related death preparation, but it also creates a pervasive ecosystem of trauma—many trans and nonbinary individuals have friends and partners who have died violently. Additionally, many trans and nonbinary folks are constantly seeing media depictions of other trans individuals dying violent deaths.

What the trans-affirming world looks like: Greater support for traumatic and nonmedical deaths, such as financial support for unexpected deaths (ideally government-provided, as with COVID-19 funeral relief from the Federal Emergency Management Agency, as opposed to crowdfunding), free or subsidized therapy and grief counseling from queer-informed therapists and counselors, and greater education around trauma for practicing death care professionals. If implemented, these policies could help all loved ones of people who die from traumatic or unexpected causes.

In this article, we have shared not only a vision of how trans-affirming death care can benefit all of us, but we gave some pointers on how you can help implement changes to ensure that end-of-life care is inclusionary and meaningful for trans and nonbinary folk. For more resources you can use to help trans and nonbinary individuals in your care, please see Talk Death on Trans Death Care Advocacy and Resources, and this Order of the Good Death article on commonly asked trans death care questions.

 

Bios:

Nix Kelley is a queer nonbinary trans death doula, aspirational writer, member of the Order of the Good Death, and Seeker on the Path of Light. They live with chosen family in southern lower Michigan with a lot of cats and the people they love. 

Isabel Knight is a human-centered designer in the death care space and an end-of-life doula based in Philadelphia. She also helps create online courses for death care nonprofits. 

 

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