A Charlottesville Woman Shares Her Death Online

Aug 15, 2019

Thanks to Twitter, Facebook and other social media platforms, many Americans live their lives online – sharing the details of their days, but a 53-year-old woman from Charlottesville decided to share her death online with the full support of her spouse. 

Kim Acquaviva and Kathy Brandt shared the dying experience online, hoping to help others facing terminal illness.
Credit Kaiser Health News

UVA Nursing Professor Kim Acquaviva and her wife, Kathy Brandt, met while working at a hospice in Florida.  Brandt had been chosen to write national guidelines for quality palliative care. Acquaviva had written a book for professionals who work with dying LGBTQ patients and their families, but the two were shocked when Brandt was diagnosed with a terminal illness.

“We talked really openly and even joked that I would die young," Acquaviva recalls. "We were pretty sure I would die young.  Everyone in my family either has a heart attack or cancer.  No one in Kathy’s family has ever had cancer.  They all die or old age or dementia, so we never thought it would be her.”

And the 19-year-old son they had adopted and raised together was distraught.

“’Why couldn’t it have been you?' he asked Acquaviva. 'She was like the fun mom.  She watched Marvel comic movies with me, and she liked going to basketball games, and all you ever did was teach me right and wrong.'  Kathy and I laughed about that for about two months," Kim says. "He loved her so much, and she was an amazing mom – and a pretty amazing wife.”

She was also a passionate professional, committed to teaching people about death and dying – wanting people to understand that what lies ahead need not be frightening, and patients are not obliged to have treatment.

“The pathology came back, and it was a far worse kind of ovarian cancer than we had realized," Acquaviva explains. "Kathy decided  that she did not want to do any treatment. Maybe she could have a year or two if she spent the entire time on chemo, and she considered any day spent interacting with healthcare not a day at all, so it was not at all a hard decision.”

What Brandt wanted was a peaceful, comfortable death – care that kept pain at bay, and she prepared to demonstrate for the world with help from her Twitter-savvy wife.

“She never wanted to miss an opportunity to educate. We decided that we would share whatever it was – good or bad along the way in the hopes that it might help someone,” says Acquaviva.

She shared the ground rules with about 4,000 followers.

“Please do not send us a list of treatments.  Please do not use the words “fight” or “war,” because we are Quakers, and that’s not helpful.”

Acquaviva provided regular updates on the patient and her family – the medical and the mundane.

“If you’re living while dying, your life continues. We had contractors in the house, one of whom was trying to suggest that Kathy drink carrot juice to cure herself, and so it was this running thing where they were leaving books in the house about the carrot cure and bringing in carrot juice for Kathy to drink, so I would tweet about that, and then tweeting some of the unflattering caregiver feelings.  I don’t want to lose her, but then there are moments when I don’t know how much longer I can do this.”

She even posted video of Brandt’s death rattle – a sound heard as dying people are unable to swallow their own saliva.

“The second it started, I turned on my phone and recorded.  Mitzi was lying by her head, and he you can hear Mitzi also snoring, so you can hear the death rattle and then Zzzzz, and that was our dog.  It’s not a terrifying, horrible thing, and it gives you a sense that you’re looking at death within 24 hours.”

Eleven hours later, Brandt died, and Acquaviva shared a picture of her at rest. Through it all, the two maintained their dignity and a sense of humor. In her obituary, which ran last week in the New York Times, Brandt insisted her cause of death be listed as the Trump Presidency, and urged that in lieu of flowers, donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

To read Kim Aquaviva’s Twitter feed:

https://twitter.com/kimacquaviva

For more information on hospice and palliative care:

http://Getpalliativecare.org

https://www.nhpco.org/hospice-care-overview/