Palliative care power couple faces cancer at home

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By JoNel Aleccia, Kaiser Health News

In the 18 years that 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 known 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.

In pursuing aggressive palliative care, Kathy Brandt, right, is focused on relieving symptoms like pain, bloating and sleeplessness.Andrew Propp for Kaiser Health News

“The day she had her scans, as soon as we 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.

“It was definitely shocking,” said Brandt, thin and wan beneath her signature spiky hair. She’d had puzzling intestinal symptoms since last summer, but never suspected it was serious.

Once the initial shock wore off, however, the couple who met while working for a Florida hospice decided to use Brandt’s illness as one more way to educate people about what it means to die.

“It’s what Kim and I have been working on for 30 years. The whole idea of: We need to talk about these issues, we need to get them out of the closet,” Brandt said. “We need to not be scared of death.”

Since her diagnosis with stage 3 ovarian clear cell carcinoma, or OCCC, Brandt and Acquaviva have been public about a controversial decision: Brandt is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation. It’s a choice made by fewer than 2% of patients facing the disease, one study showed.

But OCCC, a rare cancer, is often resistant to chemotherapy. In advanced stages of the disease, like hers, the prognosis is poor.

“Once I read things, it became very clear it would be futile,” said Brandt.

She said she has witnessed many grim cancer deaths during her career and understands the toll chemotherapy takes.

“I want to minimize the time I’m at the doctor,” Brandt said. “If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?”