End of Life Preparation

encouragements to make end-of-life plans now instead of later

I know it's hard but it's really important.

Nix Kelley

Feb 8, 2023 • 5 min read

Photo by Glenn Carstens-Peters / Unsplash

I know it's hard but it's really important.

A few statistics to start off! I know these can be pretty boring, but I am going to try and give some context around the numbers.

From research based on a 2009 and 2010 survey of 7,946 people in the United States, in which there were questions relating to advance care directives and whether they had been completed, there are some interesting conclusions that the researchers came to.

Of the 7946 respondents, 26.3% had an advance directive. The most frequently reported reason for not having one was lack of awareness. Advance directive completion was associated with older age, more education, and higher income and was less frequent among non-white respondents. Respondents with advance directives also were more likely to report having a chronic disease and a regular source of care. Advance directives were less frequent among those who reported not knowing if they had an EOL concern.

That’s a lot of information in a few sentences.

First, what’s an advance care directive?

The Cake website defines advance care directives as “…documents you complete to express what medical care you do and don't want to receive if you couldn't speak for yourself.”

(I highly recommend Cake’s website; there are resources for creating your end-of-life plans, including state-by-state regulations, and you can use their templates and then take them to be notarized or whatever else is needed to make them legally binding.)

Advance care directives, along with wills or other end-of-life documents that might apply to you and your life specifically, are extremely important documents because nobody can read your mind and know what you truly want in your experience of dying and the care of your body after death.

For the queer and pagan communities, advance care directives — correctly legally binding and including all the things you want that are important to you — are EXTREMELY extremely important. If you’re on the LGBTQIA2S+ spectrum and have either come out or not come out to your closest loved ones, there are likely things that you do not want happening to your body or written in your obituary. People that get to make decisions about your funerary arrangements, or even how you’re treated in a medical setting, are either family by blood or your legal medical advocate/health care proxy.

Essentially, if you don’t have a health care proxy and an advance care directive that your proxy or advocate or executor of your will has seen, and has an official copy in their records, the default is to people who may not know who you really are.

Side note: agreeing to be someone’s advocate for their dying and arrangements after death is a big, emotional, and exhausting job. If someone has asked if you will be this person for them, keep in mind how much work you want to plan for whenever that person is in their end of life stage. Just talking about it and seeing what their plan is can often take away a lot of the weight and pressure of doing this job.

Second, why don’t you have one?

It’s pretty likely that three out of four people reading this have either started and not finished an advance care directive or paperwork for their end of life, or they haven’t started at all.

The study I linked above notes that people who are more likely to have worked on and completed these documents and instructions are older, middle-class, white people that are likely to have a chronic illness.

Is this because end of life care costs money, and it’s easy to think about what things might cost when you have access to financial resources?

Is this because people who’ve gotten a diagnosis that puts them closer to death than not, are already in the headspace to think about it?

Is this because there are so few readily available and widely known resources?

It might be that it’s all three of those things. There are two specific pieces of information that I took from the above linked study:

Three out of four people, give or take, haven’t got any advance care directive.
The main reason for this is what’s endemic to our culture: racism, poverty, and being part of a marginalized community are some of the barriers to thinking about and making an advance care directive.

I’m worried about this for you.

I encourage you to be kind to yourself. If you need some time to process this information, please give yourself that time.

I encourage you to use your best communication and consent skills to talk to your friends, your loved ones, your chosen family, about the advance care directive you’re making, and who it is that you’d like to act as your medical proxy. Maybe this is something you can plan to do in solidarity together, so that everyone’s got their wishes written down and everyone has a person that can advocate for those wishes.

I encourage you to ask someone — maybe the person that has agreed to be your medical proxy and advocate — to sit with you while you think through and create these documents. Ask for help with getting them notarized (this is a common form of making a document legally official). Ask for help with understanding which things are important for you. If you are having a lot of trouble figuring out what to do, you might consider looking for an attorney (one who specializes in estate planning, or overseeing wills, for example) that offers a free 20-30 minute consult, so that you can ask them a few specific questions without incurring financial cost right away.

Because yes, you can be poor, you can be queer, you can be black, brown, or indigenous, and also have your end of life plans legally set and ready for whenever they are needed.

Being part of a marginalized community does not mean that end of life planning is one more thing you don’t get to have.

What if you are part of a community that often experiences sudden and traumatic death?

Chances are, especially if you’re black or brown or some other type of not-white person, and/or visibly queer, you are in more danger of early or sudden death. And planning for your end of life can be self-care for you (I know that may seem weird), and it can be a loving act for the people who will be able and willing to carry out your wishes.

If you don’t have spoons for this, store-bought is fine.

By that I mean, you can leave a comment here or email me — nixkelley@proton.me — to ask for help. Even if it’s “I don’t know what I’m doing, please help.”

I want you to be as loved and honored in your dying as you deserve to be right now while you are alive. I want you to have the experience you hope to have, and for you to find the words to describe it so that other people can understand what you want.

It’s your death, and it’s your privilege to write down and in some way codify what you want.

If you love someone that might need to read this, you can send them the link or, if you’ve gotten this in an email, you can forward it to them. Sometimes it’s easier to love others than it is to love ourselves. It’s a journey, right?

With all my hopes and love for you in these moments,
xox, Nix

Monthly and one-time donations will go toward the costs of supporting the queer community with end-of-life preparation and all the layers of need and bureaucracy that often goes along with that work. Regardless of your ability to participate in capitalism, this content will always be available to you with no strings attached.