Advance Care Planning (ACP) is about making sure your end-of-life and healthcare wishes for care are heard loud and clear when you can’t speak for yourself. Many transgender and gender‑expansive individuals face unique barriers in healthcare: fear of disclosing identity, marginalization, and forms that ignore critical details like chosen names, pronouns, and gender presentation These barriers are even present in end‑of‑life planning, funeral arrangements, and obituaries.
We’re changing that. Our project aims to create safe, affirming workshops and a tailored ACP form so you can document your medical decisions and your identity preferences in a legally sound way to protect your dignity, in life and after death.
Advance care planning (ACP) is a process in which you think about, discuss, and document your preferences for future medical care in case you become unable to make decisions for yourself.
It typically involves:
- Reflecting on your values and goals for care, such as quality of life, independence, or comfort.
- Learning about possible treatment options and outcomes; such as life support, resuscitation, or pain management.
- Choosing a trusted person (often called a healthcare proxy, substitute decision-maker, or durable power of attorney for healthcare) to speak on your behalf if you cannot.
- Documenting your wishes in legal forms such as an advance directive or living will.
Key purposes:
- Ensure that medical decisions align with your values.
- Reduce stress and conflict for family members during medical crises.
- Guide healthcare teams in providing appropriate care.
Examples of decisions included in ACP:
- Whether or not to receive resuscitation (CPR)
- Use of mechanical ventilation or feeding tubes
- Goals for end-of-life care, such as remaining at home or in hospice
- Organ and tissue donation preferences
Advance care planning is recommended for all adults, not just those who are seriously ill, because unexpected medical events can occur at any time.
We’re inviting transgender and gender‑expansive community members, community leaders, and healthcare professionals to take part in online focus groups. Together, we’ll talk about your experiences, ideas, and questions around end‑of‑life wishes.
Your feedback will help us design an inclusive, gender‑affirming workshop and create tools that make it easier for trans and gender‑expansive people to understand the system and prepare their own Advance Care Planning (ACP) documents. These documents are simply written instructions that let healthcare providers and loved ones know what matters to you in care and in identity.
You don’t need to be an ACP expert. We’re just looking for people who are willing to share their thoughts, experiences, or questions in a respectful space. You can also scroll down to read some brief information about ACP.
About the focus groups:
- Held on Zoom, lasting about 1 hour
- You’ll be asked to self‑identify as:
- A trans or gender‑expansive community member
- An organizational leader
- A healthcare professional
- This helps us form group‑specific sessions where everyone feels safe and heard.
- Your identity will be kept confidential
- Online, we keep your personal information (name, contact email) separate from any of the demographic information you share with us.
- During the focus groups, we will ask folks to use initials instead of names.
- We will ask all participants to be respectful of the group and maintain the privacy of this space for their fellow participants.
Your voice matters, and your perspective can help make end‑of‑life planning more inclusive and affirming for our communities.
Unfortunately, in healthcare settings, chosen names, pronouns, and identity-affirming preferences are not always consistently honored, even when someone is able to advocate for themselves. These risks increase when a person cannot speak on their own behalf and don’t have their wishes documented.Advance care planning becomes especially important in these moments, including clearly designating a trusted health care proxy to advocate for your wishes after death.
Having an advance care plan, a designated health care proxy, and clearly documented wishes for posthumous gender-affirming care helps ensure that:
- Your affirmed name, pronouns, and gender identity are honored in medical settings and after death
- Decisions about your body, presentation, and remembrance align with who you are and what you want
- Gender-affirming preferences are clearly documented rather than left to interpretation
- A trusted person has both the authority and guidance to advocate for your wishes
If you’d like to join, you can review the consent form and enroll here: https://redcap.iths.org/surveys/?s=HC4FY74EXXYMWFDT
If you’d like more information or to talk to someone on the study team, email us at transcend@uw.edu
If you are interested, you can click here to review and sign the consent form and fill out some brief introductory questions. Once complete, someone from our team will reach out to schedule you into a focus group.
If you have some additional questions, you can email us at transcend@uw.edu.
If you are not interested in the focus groups but would like to participate in the workshops (Summer 2026), please fill out this form with your email address, and we will reach out to you in a few months! If you participate in the focus group, you are still welcome to join the workshop, too.