‘Living Their Values’: Palliative Care Power Couple Faces Cancer At Home

WASHINGTON, D.C. — In the 18 years that Kathy Brandt and Kim Acquaviva have been collectively, loss of life has been a continuing companion.

It’s the rationale they went to work every morning. Acquaviva, a professor of nursing, wrote an acclaimed 2017 e book on inclusive end-of-life care for LGBTQ people. Brandt, a nationally identified hospice business chief and guide, was tapped to put in writing and edit the newest clinical guidelines for quality palliative care.

But in January, the skilled grew to become acutely private: Brandt, 53, was identified with metastatic ovarian most cancers and discovered she had mere months to reside.

“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, of their sunny front room final month.

“It was definitely shocking,” mentioned Brandt, skinny and wan beneath her signature spiky hair. She’d had puzzling intestinal signs since final summer season, however by no means suspected it was severe.

Once the preliminary shock wore off, nonetheless, the couple who met whereas working for a Florida hospice determined to make use of Brandt’s sickness as another strategy to educate folks 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 mentioned. “We need to not be scared of death.”

Since her prognosis with stage three ovarian clear cell carcinoma, or OCCC, Brandt and Acquaviva have been public a few controversial resolution: Brandt is pursuing aggressive palliative care, forgoing remedies reminiscent of chemotherapy or radiation. It’s a alternative made by fewer than 2% of patients dealing with the illness, one research confirmed.

But OCCC, a uncommon most cancers, is often resistant to chemotherapy. In superior phases of the illness, like hers, the prognosis is poor.

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

She mentioned she has witnessed many grim most cancers deaths throughout her profession and understands the toll chemotherapy takes.

“I want to minimize the time I’m at the doctor,” Brandt mentioned. “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?”

The couple — who married in 2010 and have a 19-year-old son, Greyson Acquaviva — have detailed their expertise in frequent, frank updates through a GoFundMe site arrange by associates to defray medical prices and residing bills. So far, no less than 440 folks have donated greater than $56,000 towards a $100,000 aim.

“I want to minimize the time I’m at the doctor,” says Brandt (proper), who was identified with metastatic ovarian most cancers in January and is pursuing aggressive palliative care.

“Everyone initially was just shocked,” mentioned Jon Radulovic, vp of communications for the National Hospice and Palliative Care Organization, or NHPCO. He labored for a decade with Brandt, whom he describes as “focused and intent, with an unending reservoir of energy.”

“The fact that she and Kim are sharing this experience really openly is making a difference,” he mentioned. In a sequence of posts and emails about Brandt’s sickness, the pair have defined what’s useful — sort messages, shared recollections — and what’s not – unsolicited recommendations about how you can “battle” most cancers.

“At this time, our family gently asks that you not offer advice about treatment options you think Kathy should consider,” Acquaviva wrote in an e-mail broadly circulated to associates and colleagues.

In pursuing aggressive palliative care, Brandt is concentrated on relieving signs like ache, bloating and sleeplessness. Although palliative care can be utilized together with healing remedies, Brandt mentioned she’s “100% certain” about her resolution.

Some family and friends have had hassle accepting that alternative, Acquaviva mentioned. One cousin despatched a message saying: “You don’t realize it, but you’re strong enough to do chemo.” An acquaintance confirmed up with recent carrot juice, insisting that ingesting 5 kilos of the juice day by day would remedy Brandt’s illness.

“I let her know really clearly that it wouldn’t,” Acquaviva mentioned.

Even Brandt’s surgeon, a extremely rated specialist, pushed again.

“Her oncologist is truly exceptional and I think she has had some struggles with this,” Acquaviva mentioned. “I said, ‘Kathy’s really clear that she doesn’t want chemo and she said: ‘I can’t just let her kill herself.’”

Despite their in depth expertise with hospice and palliative care, Brandt and Acquaviva say they’ve needed to stay agency to have her needs honored. It underscores the issue that most cancers sufferers with out their experience could face.

“The default is, you’re going to fight with chemo,” Acquaviva mentioned. “I would love to see clinicians and oncologists presenting patients with choices.”

At Sibley Memorial Hospital in Washington, D.C., the place Brandt underwent the surgical procedure that confirmed her prognosis, Nicole Ollis is her palliative care nurse practitioner. She mentioned Brandt and Acquaviva should not her typical purchasers.

“Kathy is probably my youngest patient who has been so confident not to move forward with treatment,” she mentioned. “She would be my most educated patient when it comes to maximizing quality of life.”

Soon, nonetheless, Brandt will search care from a brand new staff of palliative specialists. Two weeks earlier than Brandt’s prognosis, Acquaviva accepted a brand new job: an endowed professorship on the University of Virginia School of Nursing.

Despite her sickness, Brandt insisted Acquaviva take the put up. “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.”

Acquaviva and Brandt have been collectively for 18 years and married in 2010. Acquaviva (left), a professor of nursing, wrote an acclaimed 2017 e book on inclusive end-of-life take care of LGBTQ folks. Brandt (proper), a nationally identified hospice business chief and guide, was tapped to put in writing and edit the newest scientific pointers for high quality palliative care.

They’ve simply bought the house they owned for a decade in D.C. and acquired a brand new place in Charlottesville, Va. Greyson completed his freshman yr at Emerson College in Boston, the place his mothers proudly notice he received two awards in a pupil movie competition.

Acquaviva’s new colleagues are poised to welcome her — and to take care of Brandt in no matter approach she wants, mentioned Susan Kools, affiliate dean for variety and inclusion on the UVA nursing faculty.

“These are women who are living their values,” she mentioned. “Instead of treating this news as a bitter twist of fate, they’re embracing their values as palliative care professionals.”

Dozens of individuals have despatched playing cards, posts and emails praising Brandt and Acquaviva for being courageous in sharing their story at a time of such private hardship. But Brandt mentioned elevating consciousness about selections for dying sufferers has all the time been the legacy she’d like to go away.

“The story of palliative care is still being written,” she mentioned. “It’s so underutilized and it can be so life-changing for people, and there are so many things that block people’s access to it.”

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