The Importance of End-of-Life Planning for Queer and Trans Folks

Megan Hill

Death, and just about any tangentially related topic, is super depressing and unpleasant to talk about. Even worse is having to think about the end of your life—and how you want it to play out—in great detail. But reflecting on the topic now, before any bad shit happens, can save you and the people close to you a lot of pain.

End-of-life care is a hard topic that’s made especially harder for gender nonconforming, genderqueer, and trans folks. LGBTQ+ patients face the possibility of discrimination in healthcare, and difficult situations can be exacerbated if you aren’t close to, or are estranged from, your blood relatives, and have not designated another person to carry out your wishes. If your relatives disrespect you by misgendering you, and generally not honoring your wishes, you won’t want them making critical decisions on your behalf.

Here’s the thing: The law does not care if your parents refuse to call you by your preferred pronoun. If you don’t specify, in a legally binding document, who is in charge of your health and finances if you’re incapacitated, and you’re not married, most states hand decision-making power over to your legal relatives. That can potentially supersede your partner, chosen family, or close friends.

With advance planning, you can take the decision-making power into your own hands—and the hands of people you trust. You have the power to decide now who will be at your side making decisions for you if you’re in the hospital, unable to advocate for yourself. Signing legally binding documents like advance directives can help ensure your wishes are carried out, and can empower your chosen family if you’re unable to speak to what you want.

And that goes beyond respecting your gender identity, sexuality, and general self-expression: It extends to things like what measures you want medical professionals to take to extend your life if any. It puts someone you trust in charge of your finances, and it dictates how you want to be remembered when you die.

There are a few healthcare and financial planning documents that you’ll want to fill out to protect yourself if this situation arises.

Medical power of attorney, or healthcare power of attorney

This document (HCPOA) appoints an individual of your choosing to make medical decisions and consult with your doctors on your behalf if you’re unable to do so. With this document, you decide exactly what powers and decision-making capacities you’re giving to your agent.

It’s important, especially for queer and trans individuals, to designate a HCPOA. It’s conceivable that a medical professional may not honor your wishes regarding your gender identity, so you’ll want to have a designated advocate—your HCPOA—on your side to represent your wishes. This person will be able to choose your caregivers, select a hospital or nursing home, look at your medical information, and make decisions about life support and life-prolonging medical treatments. They can also decide to bring in a religious or spiritual leader—or to keep such influences out of your hospital room.

The healthcare power of attorney can lay out specifics with regard to your gender identity. “Making this authority explicit will decrease the chance that providers ignore the Agent’s instructions because of discomfort with or ignorance about trans issues,” according to the National Resource Center on LGBT Aging. They suggest the following language in your document: “The Agent has the authority… to direct any healthcare provider, medical staff, or other person to address me by my name and gender pronouns of choice, and to preserve to the fullest extent possible an appearance consistent with my gender identity.”

Financial Power of Attorney

If you are mentally incompetent—suffering from an illness that prevents you from making sound decisions—this document appoints an agent or attorney-in-fact to pay your bills, write checks, and generally handle your finances. This is used whether or not your health is expected to recover.

Living Will

A living will outlines your wishes regarding life-sustaining measures at the end of your life, if you’re in a coma or vegetative state. It’s not necessarily appointing a specific person to advocate and make decisions on your behalf. Instead, it informs the medical professionals caring for you about your wishes.

Advance Directives

Some living wills also include HCPOA, which turns them into “advance directives.”

Here’s an important note regarding advance healthcare directives, from Human Rights Campaign: “Although a durable power of attorney for health care [HCPOA] appoints someone else to make health care decisions for you when you are incapacitated, a hospital or court may still require specific, written directions from you regarding the withholding or withdrawal of life-sustaining measures. For this reason, a living will and a health care power of attorney should always be completed. Because each state regulates living wills differently, it is import to know what the requirements for a living will are in your state.”

Advance directives will sometimes include a section about your wishes after you’ve died, though technically this document goes out of effect at that point and the last will and testament kicks in. Still, because the advance directives are on hand when you die, they can help inform the next steps—though they’re not legally binding at this point.

Disposition of Bodily Human Remains (DBHR)

Once you die, the advocates you appointed in your advance directives no longer have power. The DBHR gives a specific person authority over your remains, ensuring your wake, funeral and burial will honor your gender identity. Trans folks especially will want to have a DBHR to ensure they are not misgendered in death.

Last will and testament

Different than a living will, your last will and testament is the traditional document people think of when they hear the word “will.” This is the document that describes how your estate—your property, assets, cash, etc.—will be divided up after you’re dead. Importantly, it also names an “executor” of your estate. Without this, a probate court will determine how to divide things up, without any regard for the nuances of a given situation. Even if you don’t have much, it’s important to nail down your will so you can avoid a potentially tricky situation.

Naming bank account beneficiaries

Drawing up a will is a lot to bite off and could end up being a fairly involved project. One quick thing you can do is select a “beneficiary” for your bank account(s). Then, you can select the person to receive any account balances if you die. While some banks have long forms you’ll have to fill out, others just require you add the beneficiary’s name and social security number, which just takes a few seconds.

This is all tough stuff, to be sure. And you may change your mind over time, so you can always go back and update your forms if necessary.

It’s important to note that the laws surrounding these documents vary by state, so you’ll need to research appropriate forms for your state, and potentially consult an attorney to make sure your bases are covered. Also be sure to get your forms notarized, keep them in a safe place, and talk to those who are close to you so they know the decisions you’ve made.

Additional resources

Free 30-minute legal consultations from the QLaw Foundation LGBTQ Legal Clinic

Hospice Foundation of America – LGBT Resources