PhD Student Co-Creates Advance Care Planning Resources for Transgender Adults

LAUREN CATLETT, MSN, RN, CNL
they/them
$10K Springfield Research Fund Dissertation Fellowship from the American Psychological Foundation for “Participatory design of an advance care planning resource for transgender and gender-diverse adults”

PhD student Lauren Catlett first began thinking about end-of-life care for transgender individuals when volunteering at a hospice facility and helping care for an older transgender woman named Carmelita Estrellita, a relationship that resulted in the 2016 publication of Little Star, a book about Estrellita’s life. Central to their dissertation is Catlett’s aim: “How we can make sure that trans people get the proper standard of care at end-of-life and that their gender-affirming care needs are met in the process?”

PhD student Catlett first grew interested in end-of-life issues among trans adults when working at a hospice facility and meeting Carmelita, a dying transgender woman with whom she published a book.

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There are many unique considerations for transgender and gender-diverse patients at the end of life, from rooming assignments and receiving gender-affirming personal care to surrogate decision-makers and gender-affirming funeral arrangements. Catlett’s two-part study will explore advance care planning within the context of gender-affirming care and involve interviews about barriers to care and ideas to address them with 15-20 transgender and gender-diverse older adults. Then, using human-centered design principles, Catlett will co-create, with participants, a resource related to advance care planning and specific to gender-affirming care. The resource could be, among other possibilities, a decision aid, a “Five Wishes”-style directive, or a surrogate decision-maker conversation guide.

Catlett's dissertation, “Participatory design of an advance care planning resource for transgender and gender-diverse adults,” earned a $10K Springfield Research Fund Dissertation Fellowship from the American Psychological Foundation.

There are more than 1.6 million transgender adults in the United States, and many more worldwide, and “accessible, high-quality gender-affirming care is an area of urgent need for people of all ages in these communities, Catlett said. “What better reason to focus my research in this area, engage this community, and find solutions to benefit them?”

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