Life Matters Media
Quality of life at the end of life

Activist Finds Inspiration In Death

Alexandra Drane regrets never asking her sister-in-law about her end of life care wishes. At 32, Rosaria “Za” Vandenberg, a devoted wife and mother, was unexpectedly diagnosed with Stage 4 brain cancer and began a journey of painful treatments and hospitalizations.

“She was diagnosed on New Year’s Eve and died seven months later,” Drane said. “One of the realizations I was only able to come to after her death, is that we did a really terrible job taking care of her, but not in the obvious ways. We were there every single night in the hospital with her throughout the entire process. But we never talked with her about what she wanted, we didn’t push back hard enough against the system. Her case was one of over-treatment.”

Drane said Za spent at least four of her last seven months in the hospital and received hospice care far too late, partly because doctors never recommended it. This month marks the 11th anniversary of her death.

“We were in a hospital that shall remain nameless but is known for delivering excellent, excellent clinical care,” Drane said. “But excellent, excellent clinical care does not go hand-in-hand with excellent human care or excellent soul care. I feel like some of the institutions across the nation that are seen to be the best are therefore by their own best intentions maybe the worst at end of life, because they feel like they’re never supposed to give up on patients.”

Drane said it was “soul wrenching” to watch her 2-year-old niece visit her once-vibrant mother lying in her hospital bed with tubes, strange noises and smells surrounding her.

“My sister-in-law was a joyful, soulful and gleeful mama,” Drane added. “Her daughter kept pulling away and pulling away from her. As a family, if you had come to us, we would have been ferocious in explaining to you how we were giving her the very best care.”

Engage With Grace

Drane gave a Ted Talk in 2010 about end of life conversations

Drane gave a Ted Talk in 2010 about end of life conversations

Instead of telling doctors to do everything they can for a dying patient, Drane wants families to first ask themselves what their loved one would truly want. Then, they can work to honor his or her wishes. To help patients and families make their wishes known before serious illness strikes, Drane co-founded the nonprofit Engage with Grace.

The free website offers a “one slide” of key questions patients should ask themselves: Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?; Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advanced directive?; If there were a choice, would you prefer to die? The website also allows patients to submit their own stories of loss.

“We wanted to give people an excuse to have the conversation, the ability to say, ‘I heard about this slide, here it is,'” she explained. “Seventy percent of people want to die at home, yet only 30 percent do. We don’t usually have these conversations.”

Drane estimates the “one slide” has been viewed more than one million times. She stressed that everyone’s end of life wishes are different, and some people will choose aggressive treatments until their final day. She stresses that the most important thing is for those wishes to be honored.

Culture Change

Conversations about death and dying are becoming more common, Drane said, because of programs like “Death over Dinner” and the aging U.S. population.

ENGAGEGRACE“We are finally getting to a place, where maybe because enough folks are hitting that age and the demographics are sort-of creating a mandate that we will all have this experience and for most of us it will go bad. But baby boomers historically aren’t happy with things that are bad,” she said. “Baby boomers changed how we were born, how we have jobs, how we marry and how we have kids. I hope they will change how we die.”

She hopes to provide resources about personal finances, because so many seniors lose most of their assets in their last years of life.

“Dying well is also more cost-effective,” Drane said. “Twenty-five percent of seniors lose all their assets in the last five years of life because of advanced care. We have people who have not died in the way they would have chosen and they devastated their financial legacy.”