Frank Talk About End-of-Life Sex: A New Study
A prospective, single-arm pilot study of an LGBTQIA-inclusive intervention to address sexual pleasure among patients with serious illness
KIMBERLY D. ACQUAVIVA, PhD, MSW, CSE, FNAP
$50K Rita & Alex Hillman Foundation grant
Widely known for her disarming social media posts, innovative scholarship, and dynamic teaching Acquaviva’s identity and personal experiences have deeply informed her work as an aging expert, sex educator, hospice and palliative care scholar, and an advocate for LGBTQIA-inclusive healthcare
In 2019, when Acquaviva’s wife, Kathy Brandt, discovered she had advanced cancer, the couple decided to use their platforms—especially Twitter and Facebook—to demystify illness, dying, and their life as a lesbian couple facing serious illness: sharing the complications, grief, and humor as well as the extraordinary and everyday matters they experienced together and separately, including, ultimately, Brandt’s death. In the process, Acquaviva’s growing number of social media followers came to realize that, as Acquaviva told The New Yorker, “The practice of dying doesn’t have to be scary.”
Acquaviva’s latest research focuses on the sexual health of LGBTQIA+ patients at the end of life, a topic foreshadowed in the documentary short, "Documenting Death," produced by the New Yorker after her wife's death. In the film, Acquaviva and Brandt discuss their differing views of sex near end-of-life, precisely the topic she'll investigate in this latest project.
While patients at end-of-life report that sex remains an important facet of their lives, even in the last weeks or days, it’s exceedingly rare for clinicians to address sexual health issues with seriously ill patients. With co-grantee Bethany Payne Geisel, a UVA Health nurse practitioner, Acquaviva will develop, deploy, and test an educational intervention to stimulate patient-provider conversations about sex and sexual pleasure at end-of-life. They will also seek to measure the impact that experiencing orgasms might have on patients’ well-being and quality of life—whether orgasms elevate mood, relieve depressive symptoms, and reduce disease-associated symptom burden.
A Fulbright alumna and one of only a handful of experts on LGBTQIA-inclusive hospice and palliative care in the world, Acquaviva’s newest book, The Handbook of LGBTQIA-Inclusive Hospice & Palliative Care (Columbia University Press, 2023) provides current and future clinicians with a practical, yet detailed guide to providing exceptional care to all patients and families, including those who are LGBTQIA+. Her latest project takes a similar approach, focusing on developing an LGBTQIA-inclusive intervention for use with all patients, not just with those who are LGBTQIA+.
“There is a staggering lack of research on sexual health near the end of life,” Acquaviva said, “and a pressing need for innovative interdisciplinary research to address this gap.”
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