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鈥楲iving Their Values’: Palliative Care Power Couple Faces Cancer At Home

Despite their extensive experience with hospice and palliative care, Kathy Brandt (right) and Kim Acquaviva say they鈥檝e had to remain firm to have Brandt鈥檚 wishes honored. (Andrew Propp for KHN)

WASHINGTON, D.C. 鈥 In the 18 years that Kathy Brandt and Kim Acquaviva have been together, death has been a constant companion.

It鈥檚 the reason they went to work each morning. Acquaviva, a professor of nursing, wrote an acclaimed 2017 book on . Brandt, a nationally known hospice industry leader and consultant, was tapped to write and edit the latest

But in January, the professional became acutely personal: Brandt, 53, was diagnosed with metastatic ovarian cancer and learned she had mere months to live.

鈥淭he day she had her scans, as soon as we saw them, I was like, 鈥業t鈥檚 clear what this is,鈥欌 recalled Acquaviva, 47, settling beside the couple鈥檚 small spaniel, Mitzi, in their sunny living room last month.

鈥淚t was definitely shocking,鈥 said Brandt, thin and wan beneath her signature spiky hair. She鈥檇 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鈥檚 illness as one more way to educate people about what it means to die.

鈥淚t鈥檚 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,鈥 Brandt said. 鈥淲e need to not be scared of death.鈥

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鈥檚 a choice made by facing the disease, one study showed.

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

鈥淥nce I read things, it became very clear it would be futile,鈥 said Brandt.

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

鈥淚 want to minimize the time I鈥檓 at the doctor,鈥 Brandt said. 鈥淚f it鈥檚 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?鈥

The couple 鈥 who married in 2010 and have a 19-year-old son, Greyson Acquaviva 鈥 have detailed their experience in frequent, frank updates set up by friends to defray medical costs and living expenses. So far, at least 440 people have donated more than $56,000 toward a $100,000 goal.

鈥淚 want to minimize the time I鈥檓 at the doctor,鈥 says Brandt (right), who was diagnosed with metastatic ovarian cancer in January and is pursuing aggressive palliative care.(Andrew Propp for KHN)

鈥淓veryone initially was just shocked,鈥 said Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization, or . He worked for a decade with Brandt, whom he describes as 鈥渇ocused and intent, with an unending reservoir of energy.鈥

鈥淭he fact that she and Kim are sharing this experience really openly is making a difference,鈥 he said. In a series of posts and emails about Brandt鈥檚 illness, the pair have explained what鈥檚 helpful 鈥 kind messages, shared memories 鈥 and what鈥檚 not 鈥 unsolicited suggestions about how to 鈥渂attle鈥 cancer.

鈥淎t this time, our family gently asks that you not offer advice about treatment options you think Kathy should consider,鈥 Acquaviva wrote in an email widely circulated to friends and colleagues.

In pursuing aggressive palliative care, Brandt is focused on relieving symptoms like pain, bloating and sleeplessness. Although palliative care can be used along with curative treatments, Brandt said she鈥檚 鈥100% certain鈥 about her decision.

Some friends and family have had trouble accepting that choice, Acquaviva said. One cousin sent a message saying: 鈥淵ou don鈥檛 realize it, but you鈥檙e strong enough to do chemo.鈥 An acquaintance showed up with fresh carrot juice, insisting that drinking 5 pounds of the juice daily would cure Brandt鈥檚 disease.

鈥淚 let her know really clearly that it wouldn鈥檛,鈥 Acquaviva said.

Even Brandt鈥檚 surgeon, a highly rated specialist, pushed back.

鈥淗er oncologist is truly exceptional and I think she has had some struggles with this,鈥 Acquaviva said. 鈥淚 said, 鈥楰athy鈥檚 really clear that she doesn鈥檛 want chemo and she said: 鈥業 can鈥檛 just let her kill herself.鈥欌

Despite their extensive experience with hospice and palliative care, Brandt and Acquaviva say they鈥檝e had to remain firm to have her wishes honored. It underscores the difficulty that cancer patients without their expertise may face.

鈥淭he default is, you鈥檙e going to fight with chemo,鈥 Acquaviva said. 鈥淚 would love to see clinicians and oncologists presenting patients with choices.鈥

At 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.

鈥淜athy is probably my youngest patient who has been so confident not to move forward with treatment,鈥 she said. 鈥淪he would be my most educated patient when it comes to maximizing quality of life.鈥

Soon, however, Brandt will seek care from a new team of palliative specialists. Two weeks before Brandt鈥檚 diagnosis, Acquaviva accepted a new job: an endowed professorship at the University of Virginia School of Nursing.

Despite her illness, Brandt insisted Acquaviva take the post. 鈥淚n the midst of dying, you鈥檝e got to have, if at all possible, something to look forward to. I鈥檓 looking forward to it for Kim.鈥

Acquaviva and Brandt have been together for 18 years and married in 2010. Acquaviva (left), a professor of nursing, wrote an acclaimed 2017 book on inclusive end-of-life care for LGBTQ people. Brandt (right), a nationally known hospice industry leader and consultant, was tapped to write and edit the latest clinical guidelines for quality palliative care.(Andrew Propp for KHN)

They鈥檝e just sold the home they owned for a decade in D.C. and bought a new place in Charlottesville, Va. Greyson finished his freshman year at Emerson College in Boston, where his moms proudly note he won two awards in a student film festival.

Acquaviva鈥檚 new colleagues are poised to welcome her 鈥 and to care for Brandt in whatever way she needs, said Susan Kools, associate dean for diversity and inclusion at the UVA nursing school.

鈥淭hese are women who are living their values,鈥 she said. 鈥淚nstead of treating this news as a bitter twist of fate, they鈥檙e embracing their values as palliative care professionals.鈥

Dozens of people have sent cards, posts and emails praising Brandt and 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鈥檇 like to leave.

鈥淭he story of palliative care is still being written,鈥 she said. 鈥淚t鈥檚 so underutilized and it can be so life-changing for people, and there are so many things that block people鈥檚 access to it.鈥

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