Illustration by Anna Cai.

Content Warning: While this piece is aimed at supporting joy in trans life, it is a discussion of end-of-life, death, the care associated with them, and mortality. It will also touch on birth family and transphobia. Please take care of yourself before, during, and after reading. 

I want you to be cared for while you’re here. If it feels like that won’t be for long, I ask you to please, reach out to someone you trust enough to talk to, or the crisis text line or trans lifeline.

The idea of living wills is a familiar one; alongside life insurance, they’ve been a fixture of procedural plots for decades. The true power of the living will extends far beyond property though. They can allow you to direct how you’re cared for and remembered, in life and in death, in an array of ways — this is why I’ll be calling them by their other name, advance directives. 

Too often trans and gender-variant life and death are only talked about when transphobia adds layers of needless tragedy to them. I’m not going to repeat the stories many of us already know, of our community members being stripped of their names and genders in death. Today, in honor of Trans Day of Visibility, I want to talk about how advance directives are a tool that can put control of that visibility back into our hands.

To contemplate the end of your own life in depth like this can feel like a morbid exercise; in many ways it is. However, this is also an exercise in imagining life: What really matters to you about your identity and comfort and life, how you want to exist after your body is gone. It is an exercise in care: How you want to be cared for before and after your death, how you want to care for your loved ones in their grief by providing direction to guide their decisions. It is not an easy conversation to have, with yourself or your loved ones, but it is much easier to have while you’re here.

So what can an advance directive do for you, really? 

Simply put, it allows you to designate how you want to be cared for before and after your death when you’re not able to make decisions for yourself. While my language is geared towards death care planning, advance directives cover all situations where you can’t make your care wishes known because of illness or injury.

Your plans can be as simple or as detailed as you’d like and can include basically anything you can think of relating to end-of-life and death care (as long as it’s legal in your state.) That’s really broad though, so here are some specific examples of what you can include: 

• What medical care you do and do not want, including pain relief, resuscitation, and more
• What comforting things you want before your death, such as music, the company of loved ones, religious and spiritual practices, warm baths, your favorite show
• How you want to be referred to before and after death
• Who you want to do your hair, makeup, nails, or shave for you when you’re not able to
• What you do and don’t want done with your body after death, including your preference about autopsy (which may be deemed necessary), organ donation, embalming (which by law is not required in Illinois), burial, burial containers (which doesn’t have to be a massive metal casket), cremation, alkaline hydrolysis (a more eco-friendly cremation alternative)
• What you want your funeral service to be, including how you want to be dressed, spoken about, and who you want to be there. In Illinois, the person making these arrangements is required to work with a licensed funeral director, but there is a much bigger range of funeral directors out there than you might think!

So how do you go about creating one of these documents? Before I get started, I need to give one caveat. While an advance directive can help protect your funeral plans around the world, Angela Woosley of Inspired Journeys and my expert source, is specifically an expert in United States laws surrounding advance directives, so the advice I can provide without risking misinformation is limited to the United States, and may not apply to everyone’s immigration situation. Because of these limitations, I’ve collected some resources in the appendix on how you can get started with funeral planning if you’re a citizen outside the United States.

If you’re an Illinois resident, you can find your advance directive form in English and Spanish here. You can find a similar form for Minnesota (that can be adapted for different states) here in multiple languages including Arabic, Chinese, Somali, Hmong, Russian, and Vietnamese. It has some details already included, but if anything doesn’t sound like what you want, you can cross it out! You can also add anything you want that it doesn’t include, and specify when you want it to go into effect (for example, immediately or only when you’re not able to make your own decisions). 

In Illinois, you need two witnesses for your advance directive to be legally valid, and once it’s in place it can only be challenged by going to a judge. A court challenge is unlikely to work if your paperwork is in order – especially when you’ve also designated power of attorney, a funeral agent, and created a will (all of which I’ll talk about in a bit.) You only need to complete an advance directive for the state you live in, but if you’re worried about legal family members in another state you can get an advance directive there as well; it’s a free way to protect your peace of mind.

What an advance directive won’t cover is who is in charge of your care decisions, both before and after death. Fortunately, there are a couple more free documents that will have you covered! The first is called power of attorney (you can find the Illinois form here) which gives someone the ability to do things like make decisions about healthcare when you’re not able to and to pay medical bills on your behalf. However, when you give someone power of attorney YOU get to decide what decisions they have the power to make – again, if there’s anything you don’t like in the form, you can cross it out! You also get to give directions for how you want decisions made on your behalf, like with the advance directive. 

When you grant power of attorney, you can choose anyone from a close friend or family member to an actual attorney; there are many professionals who you can pay to take that power on, which can be helpful if you need them to make tough decisions about things like resuscitation. The big caveat with power of attorney is that whatever powers you give the person, those powers will end with your death. 

This is where the second document comes in – designation of a funeral agent. There isn’t an official form for this, but you can find details on what it needs to include in Illinois here (you can find state-by-state information on funeral agents here). To break down the legalese, you need to designate who your funeral agent is, any limitations you want to put on their power over your funeral arrangements, and who will be your agent if the person you originally choose is unavailable for any reason. Once you’ve assigned someone, they have the final say about your funeral arrangements over your legal family. Like the last two documents, you can also include any directions you want your funeral agent to have.

Unlike the advance directive, which just needs two witnesses, the documents designating power of attorney and a funeral agent need to be notarized to be legally binding. The good news is that you can find a notary public (the official able to notarize the documents) anywhere from an attorney’s office to any bank. The bad news is that there is often a $1 fee per signature, and you typically need to provide a government-issued photo ID, both of which can be barriers; in the appendix, I’ve listed a few trans-focused legal organizations who can help you with these forms, as well as identity documents and more.

Once you’ve created all these documents, you need to make sure people know about them. As much as you’re able to, talk to immediate family about your care plans, including your spouse (if you have one) since they will likely be the first person called on to make death care decisions for you (which makes legal marriage a very helpful tool in protecting death care plans.) It’s helpful to distribute physical copies to anyone you think will need or want one and to make sure you have copies where you live. It sounds strange, but putting copies in or on your fridge or freezer is a great way to make sure your advance directive and other important documents will be found. The people who need these documents might not know how your personal filing system works, but if your documents are visible or in with the perishables it will be much harder to not find them.

This was a lot of legal information to throw at you, but ultimately this whole process is a way to imagine and create a future where your agency and your ability to care for your community don’t end when your life does. Thinking about your own death can be really hard, but planning for it doesn’t have to be; no one is better equipped to say what will make you feel cared for than you. I’ve listed some more resources below to help guide you through this act of care for yourself, your chosen family, and your community. Take care, and happy Trans Day of Visibility!

Appendix:

If you have any questions about death care planning that I didn’t answer here, I want to hear them! You can submit your questions here until April 15th, 2022. In a follow-up later this semester I’ll do my very best to answer them, with help from Angela Woosley of Inspired Journeys, the Midwest’s first woman-owned natural death care provider. 

INTERNATIONAL

• Blackbird Medicines is a grassroots collective of First Nations death doulas, working to reclaim culture and ceremonies for families on the unceded territory of the Algonquin Anishinaabeg.  
• The Canadian Integrative Network for Death Education and Alternatives gives information about natural burial options and other death rights under the Canadian government.
• DMD Mexico has comprehensive information in a variety of languages, including Spanish, Maya, Náhuatl, Tsotsil, Tseltal, and Zapoteca, on death care, planning, and rights in Mexico. 
• The Good Funeral Guide, a UK non-profit, worked with Ash Hayhurst to create this guide to queer funerals. 
• The Natural Death Advocacy Network gives information on death care and rights under the Australian government.
• This article gives a brief overview of some of the rules and rights around advance directives in India.
• The Collective for Radical Death Studies is an international group of scholars and death care practitioners working to achieve the goals of decolonizing death studies in theory and in practice.

LEGAL HELP 

• The Transgender Law Center offers a number of services to trans and gender variant community members in Chicago, including helping with name and gender marker changes, finding housing, and helping people live through incarceration.
• Chicago House’s TransLife Care provides support for housing, legal and medical needs, sexual health, and employment to trans and gender variant folks.
• Chicago Volunteer Legal Services offers a range of pro bono legal services, including regular clinics open to the public.
• The Filipino American Lawyers Association of Chicago offers pro bono legal services to Filipino community members in Chicago.

FUNERAL PLANNING

• If you’re feeling overwhelmed with information, this planning checklist goes over everything from legal documents to social media accounts step-by-step. The “Get Your Shit Together Checklist” also goes over a wide array of end-of-life planning steps.
• This podcast from the Order of the Good Death covers a bunch of planning steps in 20 minutes!
• This video (which is from 2020, so some of the legal information may be out of date) also from the Order of the Good Death offers more information on trans death rights, as does this article from them.
• While the official “Five Wishes”  form is $5, this free sample gives an excellent starting point for figuring out your end-of-life and death care wishes.
• Remembering A Life has great resources on death care planning, planning a service for a loved one, and grieving.
• The National Hospice and Palliative Care Organization has a variety of resources for folks seeking and providing end-of-life care.  
• Funerals are really expensive! This resource from the Order of the Good Death gives a comprehensive overview of funeral costs and how you can get help with them, as well as what happens if no-one is there to make arrangements. 
• ​CAKE has state-by-state information on advance directives and other helpful documents. 
• Queering Death is an ongoing learning group which has collected many resources on queer death, dying, loss, and grief. 
• The National Home Funeral Alliance is an organization advocating for and giving resources on home funerals. 

Elton Amadou-Connell (BFAW 2023) just started working on an advance directive because they don’t follow their own advice. @velvatone