Death Is This Professor’s Life’s Work. When It Hit Close to Home, She Invited Everyone to Watch.

A crude video of Katherine E. Brandt’s “death rattle” appeared on Twitter on Saturday, about 11 hours before she succumbed to ovarian cancer. Her wife, Kimberly D. Acquaviva, had posted it there.

For Acquaviva, a nursing professor at the University of Virginia whose scholarship focuses on end-of-life issues, academic interests and personal suffering have for the past six months uncomfortably intertwined. As Brandt, a hospice professional and Acquaviva’s wife of 18 years, steadily declined, Acquaviva witnessed the unrelenting progress of a disease and confronted afresh her academic assumptions about what it is like to watch a loved one slowly die.

The couple decided to share their story with the world, creating a somatic social-media diary that traced Brandt’s final days in sometimes excruciating detail. Through Twitter, Acquaviva reported on Brandt’s labored breathing, her struggles to urinate, her declining interest in food, and her apparent annoyance with a Spotify “deathbed playlist” that had seemed like a good idea when their 19-year-old son, Greyson, had created it weeks before.

Then, the inevitable. Brandt died on August 4 at 4:51 a.m., her wife reported. She was 54.

Responses to Acquaviva’s posts were almost uniformly positive, as her colleagues and followers thanked the couple for providing an unvarnished view of the last stage of a terminal illness. It’s a reaction, Acquaviva says, unlike any she has received during a career in higher education.

“The past six months of me tweeting, I’ve probably had more of an impact on people in the field than any journal article I’ve written,” says Acquaviva, author of LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice (Harrington Park Press, 2017). “That’s shocking to me, but it also makes me think: When we talk about putting out knowledge, how do we think about it in new ways? It’s been eye-opening for me.”

Plenty of people turn to social media to inform friends and colleagues about health issues, and some choose to offer up the same sort of frank disclosures that Acquaviva and Brandt have provided in recent weeks. What was striking in this case, however, was how closely the couple’s experience dovetailed with their lives’ work.

Before her appointment as a nursing professor at George Washington University, where Acquaviva had worked until her recent appointment at Virginia, she was a social worker in hospice. Brandt, while not an academic, was a nationally recognized hospice- and palliative-care consultant, who wrote peer-reviewed journal articles with Acquaviva on caregiving and end-of-life issues.

In theory, two people could not have been better prepared for this difficulty. At the same time, Acquaviva says, she was not ready for what she describes as “the burden of uncertainty” — a phenomenon that she hasn’t explored deeply in her own research.

“The burden that the caregiver carries that no one can help with is not knowing how long this is going to take,” says Acquaviva, who is 47. “If I were running a marathon, I would know how many miles the marathon is. What I never articulated well with caregivers was, you’re going to be running a marathon of unspecified miles, and at Mile 24 or at Mile 113, you have to be prepared to keep running while knowing that you have no idea how much longer you have to keep running.

“That is mentally really, really tough,” she continues. “That is one of the hardest things.”

Dignity and Privacy

Even in an era of greater personal disclosure, publicly documenting a person’s illness in detail raises questions about privacy and dignity.

In 2013, when Scott Simon, host of NPR’s Weekend Edition Saturday, live-tweeted his mother’s death, he got mostly favorable feedback for honoring her life and sharing her wit. But there was some minor pushback from those who suggested that he had capitalized on her illness.

After Acquaviva posted a video of Brandt “gleefully refusing to pee,” one respondent said she couldn’t “fathom” how Brandt had given consent. In a response, Brandt said in a video that she had wanted people to see her in the process of dying.

“I want Kim to keep filming everything and sharing it publicly, and that will make me happy,” Brandt said in the video, which was posted on Twitter 10 days before she died.

For folks who have questioned whether @Kathy_Brandt approves of videos being tweeted as she dies, please respect her wishes - and those of our son and me - that her death be an extension of her life’s work. https://t.co/svdvo0Ox5X pic.twitter.com/o6LsrloyUW

— Kimberly Acquaviva (@kimacquaviva) July 25, 2019

There were some ground rules, although very few. Anything that showed Brandt “unclothed or that could be humiliating” was off limits, Acquaviva says. On at least one occasion, the couple disagreed on where that line was. When Brandt was sitting on a toilet with a “barf bag” in her hand, she thought it so darkly funny that she asked Acquaviva to take a picture and post it. The professor demurred.

“I would not share anything that would disrespect her dignity,” she says.

Underlying the project, Acquaviva says, was an abiding sense that the couple were, through Brandt’s death, carrying on with their professional lives.

“If she and I were both English professors, and we’re sharing this, it would be harder for me to see this as a benefit,” Acquaviva says. “But because my life’s work and her work was educating people about death and dying, sharing became an extension of that.”

Jean E. Johnson, dean emerita of George Washington’s School of Nursing, where Acquaviva was previously a faculty member, says she is curious to see how the professor’s personal experience with the death of her spouse will inform her work in the future.

“When your work comes home,” Johnson says, “how does it change your perspective? What do you learn from it? What do you then want to share with the world? I think it’s a really interesting question.”

The Trade-Offs of Going Public

It is unclear how or whether people live-tweeting through a serious illness will inform health-care research. The benefits to patients are a matter of dispute, too. Social media can offer community support to cancer patients, but it also exposes them to targeted advertising for unproven treatment methods, and anxiety-inducing information overload, according to an article recently published in the Journal of Oncology Practice.

Those risks are real, but the benefits of people sharing their experiences with terminal illnesses are potentially significant, according to Carla J. Sofka, a professor of social work at Siena College, who teaches and writes about death and dying.

“I see what this couple has done as public death education,” she says.

Brandt received a cancer diagnosis in January, and she soon learned she had Stage 3 ovarian clear-cell carcinoma. She decided not to undergo chemotherapy, which she concluded had little chance of meaningfully extending her life.

“I didn’t even want one day taken away from my son and my wife because I didn’t feel good because of the treatment,” Brandt said in a videotaped interview. “I knew from an informed perspective that it wouldn’t change the outcome, and I decided that time spent in a quality fashion with my family was way more important than trying a few rounds of chemo just to make everyone feel good.”

For a lot of cancer patients, the choice to forgo aggressive treatment isn’t sufficiently explained or understood, Sofka says. Social media might help to change that.

“If there aren’t stories about other people’s journeys, all they have access to is what that doctor is telling them in the room,” Sofka says. “Some doctors will treat, treat, treat until the patient dies.”

Throughout Brandt’s illness, the couple brought a seemingly dispassionate analysis to the choices in front of them, says Johnson, the former nursing-school dean. Not long after her diagnosis, Brandt wanted to move to Charlottesville, Va., where Acquaviva had accepted a faculty position, so that her wife could get straight to work after Brandt died. There was no sugarcoating the fact that, in all likelihood, their life together was coming to an end.

“The planning they did was remarkably open, honest — sometimes it almost sounded a little brutal,” Johnson says. “But it worked for them.”

Acquaviva plans to start work at UVa on Thursday.

Jack Stripling covers college leadership, particularly presidents and governing boards. Follow him on Twitter @jackstripling, or email him at jack.stripling@chronicle.com.