Couple

Kathy Brandt and Kim Acquaviva have been together, death has been a constant companion. It’s the reason they went to work each morning. Acquaviva, a professor of nursing, wrote an acclaimed 2017 book on inclusive end-of-life care for LGBTQ people. Brandt, a nationally know hospice industry leader and consultant, was tapped to write and edit the latest clinical guidelines for quality palliative care.

But in January, the professional became acutely personal: Brandt, 53, was diagnosed with metastatic ovarian cancer and learned she had mere months to live.”The day she had her scans, as soon as they saw them, I was like, ‘It’s clear what this is,'” recalled Acquaviva, 47, settling beside the couple’s small spaniel, Mitzi, in their sunny living room last month.

Pursuing aggressive palliative care

It’s what Kim and I have been working on for 30 years. The whole idea of: They need to talk about these issues, we need to get them out of the closet,” Brandt said. They need to not be scare of death. Since her diagnosis with stage 3 ovarian clear cell carcinoma, or OCCC, Brandt and Acquaviva have public about a controversial decision: Brandt is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

But OCCC, a rare cancer, is often resistant to chemotherapy. In advanced stages of the disease, like hers, the prognosis is poor. Some friends and family have had trouble accepting that choice, Acquaviva said. One cousin sent a message saying: You don’t realize it, but you’re strong enough to do chemo. An acquaintance show up with fresh carrot juice; so insisting that drinking 5 pounds of the juice daily would cure Brandt’s disease.

Despite their extensive experience with hospice and palliative care, Brandt and Acquaviva say they’ve had to remain firm to have her wishes honored. It underscores the difficulty that cancer patients without their expertise may face. The default is, you’re going to fight with chemo, Acquaviva said. They love to see clinicians and oncologists presenting patients with choices.

At Sibley Memorial Hospital in Washington, D.C., where Brandt underwent the surgery that confirmed her diagnosis, Nicole Ollis is her palliative care nurse practitioner. She said Brandt and Acquaviva are not her typical clients. Kathy is probably my youngest patient who has been so confident not to move forward with treatment, she said. They would be my most educated patient when it comes to maximizing quality of life.

Team of palliative specialists

Soon, however, Brandt will seek care from a new team of palliative specialists. Two weeks before Brandt’s diagnosis, Acquaviva accept a new job: an endow professorship at the University of Virginia School of Nursing. Despite her illness, Brandt insisted Acquaviva take the post. In the midst of dying, you’ve got to have, if at all possible, something to look forward to. I’m looking forward to it for Kim.

They’ve just sold the home they own for a decade in D.C. and bought a new place in Charlottesville, Va. Greyson finish his freshman year at Emerson College in Boston, where his moms proudly note he won two awards in a student film festival. Acquaviva’s new colleagues are poise to welcome her and to care for Brandt in whatever way she needs, said Susan Kools, associate dean for diversity and inclusion at the UVA nursing school.

These are women who are living their values, she said. Instead of treating this news as a bitter twist of fate, they’re embracing their values as palliative care professionals. Dozens of people have sent cards, posts and emails praising Brandt ; also Acquaviva for being brave in sharing their story at a time of such personal hardship. But Brandt said raising awareness about choices for dying patients has always been the legacy she’d like to leave.