How do you see trans advocacy intersecting with end-of-life options advocacy, if at all? What similarities does the trans rights movement share with the end of life movement?

There’s a lot of overlap in the areas of personal and bodily autonomy between the two movements. How we live and how we die is an incredibly personal and nuanced experience, and many of the stringent-at-best and hateful-at-worst legislative measures, either passed or proposed, do not take any of those nuances into account. I believe it’s up to us to decide how we live in our bodies throughout our lifespan, including its conclusion, and is not something that should be regulated by outside third parties that know nothing about our internal and life experiences.

What made you decide that you wanted to work in end-of-life care advocacy?

For me, the work we do here is personal. Not to sound morbid, but I’ve been exposed to death at a young age and as a young adult; in my late 20s, I also took care of my grandfather when he was in at-home hospice care at the end of his life, and was with him as he passed. This was a profound experience that really changed my life, and I wanted to be able to help others have the peaceful, as painless as possible death that they want. While my grandpa passed away peacefully with me by his side, he also suffered a lot of pain in the weeks leading up to his death due to the complications with his terminal cancer.

While my grandfather was in hospice, I was also helping my grandmother through treatment for her stage 3 breast cancer, which eventually turned metastatic and killed her as well. What makes my grandparents’ cases even more complex is that we are a family of immigrants, and both of them had a limited working knowledge of the English language and were not aware of all the palliative care options available to them. I became an advocate for them because their doctors didn’t willingly bring up palliative care or end-of-life planning and they did not know to ask for it or fully understand the scope of the options available to them. As such, I wanted to work with Compassion & Choices, since we not only advocate for a full range of compassionate end-of-life options, but also provide accessible and inclusive education and outreach.

Why is end-of-life planning important to you, and are there any specific aspects of your end-of-life planning that you’d like to share?

As someone whose identity falls into several marginalized groups, including the LGBTQ+ community, end-of-life planning is extremely important to me, particularly in the current political climate. With over 400 pieces of anti-LGBTQ+, and specifically anti-trans, legislation introduced this year, my partner and I worry that we will not have access to the same rights guaranteed to folks who are not part of these groups. Especially living in the south, it’s important to be prepared as our rights are often the topic of debate here and legislation taking those rights away is being considered and passed in some cases routinely.

My partner and I will be getting married this fall, but since marriage equality is one of the items that is up for debate, we want to be as prepared as possible to ensure we can have a say in our end-of-life care and to be an advocate for each other should one of us become unable to advocate for our own wishes and preferences in end-of-life care. We plan on making sure we have detailed advance directives filled out and designating each other as our healthcare proxies and given power of attorney, as well as making a living will naming each other as recipients of each others’ benefits should anything happen to one of us. That way, even if our marriage is to become considered null and void by the government, we will be able to be part of each other’s medical and end-of-life care. It would be absolutely devastating to think that the person I love, my life partner may not be allowed to be by my side in the hospital should something serious happen to me or would not be able to access any of my life insurance should I pass away, and preparing these end-of-life planning materials in advance will hopefully mean that that won’t happen.

Both my partner and I also come from family backgrounds with very different values that they may try to impose on our end-of-life care and memorial services that would directly contradict our own. Stating our wishes in writing in legally recognized documents would ensure we don’t receive care we would not want at the end of life.

Why is end-of-life planning important to the trans and gender nonconforming community?

I think it’s especially important for our community because many of us have difficult or non-existing relationships with our families or origin. For many of us, our end-of-life care wishes may be directly opposite from that of our families or origin, who would legally have the right to impose their own wishes and values on us if no one else is legally designated. For myself personally, and many folks I know in the trans and GNC communities, our chosen families we make are extremely important, but who are not automatically granted any legal rights when it comes to our end-of-life care. The end-of-life planning process and prepared documentation for it can help ensure we have the people we want by our side and only those medical interventions we want at the end of life.

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