Kathy Brandt, a hospice trade chief who turned her personal terminal most cancers analysis right into a public dialog about decisions on the finish of life, died Aug. four. She was 54.
Brandt’s loss of life was introduced on social media by her spouse and associate of 18 years, Kimberly Acquaviva, 47, a professor of nursing and creator of a e-book about hospice look after LGBTQ sufferers and households.
“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”
Brandt died on the Charlottesville, Va., residence she shared together with her spouse, their 19-year-old son, Greyson Acquaviva, and their canines, Dizzy and Mitzi. She was identified in January with stage three ovarian clear cell carcinoma, a uncommon and aggressive most cancers.
For the previous a number of months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a sequence of frank, intimate posts on Facebook and Twitter geared toward demystifying the method and empowering different sufferers.
After researching her illness, which has a median prognosis of less than 13 months and sometimes fails to reply to chemotherapy, Brandt refused drug therapy, declining what she thought to be “futile” drugs. Instead, she selected aggressive palliative care to handle her signs, to the dismay of some family and friends — and even her oncologist.
“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?” Brandt told Kaiser Health News in April.
The couple’s posts had been adopted by tons of of well-wishers who donated more than $80,000 to assist defray residing bills and medical prices. The essays and tweets had been an unusually intimate window into the bodily, emotional and psychological technique of dying.
In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., the place they lived till June.
“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.
During the final weeks of Brandt’s sickness, Acquaviva tweeted about her associate’s bowels, posted photographs of her sleeping and shared that Brandt was distressed about what would occur to her and to her household when she died. The frank posts prompted concern from individuals who requested whether or not Brandt had consented to have her loss of life live-tweeted for the world. Acquaviva replied:
“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”
A well known hospice trade chief and marketing consultant, Brandt spent three many years within the area and was most not too long ago tapped to jot down and edit the most recent model of clinical guidelines for quality palliative care.
The willingness of Brandt and Acquaviva to share an unflinching account of terminal most cancers drew reward from fellow hospice and palliative care consultants, mentioned Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime good friend.
“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an electronic mail earlier than her loss of life.
Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their expertise.
“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted final month.
Brandt remained obsessed with encouraging sufferers to think about the total vary of decisions when confronting terminal sickness.
“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 electronic mail. “Then seek out care that will help you make that version a reality.”
Acquaviva mentioned they’d apprehensive that Brandt wouldn’t obtain the care they’d hoped for in a hospice setting — regardless of their lengthy efforts to advocate for higher circumstances for LGBTQ individuals.
In a put up on their gofundme web page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”
Brandt requested that her obituary seem in The New York Times. It is scheduled to run subsequent weekend, Acquaviva mentioned, and it features a ultimate request that nods to the activism that characterised Brandt’s work on behalf of LGBTQ individuals and others who want end-of-life care.
“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”
A memorial for Brandt will probably be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.