One of the most significant sources of power is awareness of our options in all facets of life
By Naomi Edmondson
As part of my Pride celebrations last month, I worked through the End of Life Care Community Advocate Training, created by End of Life Choices New York. I was moved to register for this course because I want to further my understanding of advance care planning for myself and my communities. To me, one of the most significant sources of power, especially for QTBIPOC (Queer, Trans, Black, Indigenous, People of Color), is awareness of our options in all facets of life. Here are some things I have taken away from this course so far:
- The importance of a health care proxy
A Health Care Proxy form (known elsewhere as Healthcare Power of Attorney form, Medical Power of Attorney, or Healthcare Agent form) is a document that allows you to appoint a person of your choosing to make healthcare decisions for you. This document is only activated if and when you become incapacitated or unable to communicate. With this document, you can name a person of your choosing. I find that incredibly empowering: the ability to designate someone you trust to honor your wishes and care. This form is also not set in stone. You can update this document whenever you wish, and your situation (and relationships) change.
2. Choosing your health care agent with care (and consent!)
Choosing a health care agent (the person you appoint as your proxy on the Health Care Proxy) is a decision that should be made with care and awareness (with the understanding that you can change your proxy and update as needed). Your health care agent should be someone you trust to make decisions on your behalf. On a deeper level, it should also be a person who makes you feel heard and respected. Someone capable of making tough decisions and honoring what you want, even if it may contradict their own wishes. (a big plus for those not communicating with their chosen family. If there is no one present that you can appoint, a Living Will could be a great alternative). Your healthcare agent can be a friend, a partner, a member of your church/community, or anyone you trust to make decisions for you (and actively consents).
Additionally, it is a good idea to designate an alternative or backup agent in case your primary agent is unwilling or unable to follow through. Equally important, if the person you choose as your agent does not consent, they are allowed to say “no.” Not everyone feels they are in a position to fulfill this privilege.
3. Once you choose your health care agent, talk to them!
Once you have chosen your health care agent and they have consented, it is essential to let them know what your medical wants and desires are. This will allow them to advocate for you from a place of knowledge and understanding. It will also increase the chances of your medical wishes being acknowledged and honored. Some helpful things to remember:
1) It’s ok to be nervous! Conversations like these can feel loaded.
2) Discussing your wishes with your agent is an ever-evolving conversation, so don’t feel pressured to figure it out in one go.
3) The conversation with your health care agent is just that: a conversation! While it’s important to share, listening to their thoughts, questions, and concerns is also vital.
4) And lastly, the decisions you make for yourself with your health care agent are not set in stone. You can update and reconfigure them at your choosing, whenever you see fit.
These are just a few beneficial things I have taken from this advocacy program. I look forward to sharing more of this information with my communities so we can be honored at all stages in life, including how we plan for its end.
Naomi Edmondson (she/her) is a Grief Guide, Breathworker, space holder, and Black Queer Femme with all the feelings. The loss of a close mother figure is what brought her to deathcare, her training with Going with Grace, and the beginning of her time as a Hospice Volunteer. The death of her mother brought her to Grief care, her training as a Grief Guide, and what it really means to lose a parent. She provides safer, gentle spaces for conversations around death, loss, grief, and everything in between. Connect with her on Instagram (@theglorioushum) or