Tragic story inspired Engage With Grace
Like all movements, Engage With Grace started with a story – in this case, a very tragic story. In 2004, at age 32, Rosario Vandenberg fell ill and was subsequently diagnosed with a malignant brain tumor. Following the diagnosis, Vandenberg, a career pharmacist and the mother of a two-year-old daughter, lived only seven short months. Her family watched helplessly as the cancer took its toll, and after two months in the hospital, doctors said that Za, as Rosario’s family knew her, didn’t have long to live.

Vandenberg’s sister-in-law, Alexandra Drane, recalls: “When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home,” said Drane. The family, however, did not agree.

Antonio Drane, Alexandra’s husband and Za’s brother, told the doctors in no uncertain terms that the family would take their beloved Za home to die in their midst. Although the family had never discussed with Za what they should do in this situation, Antonio believed she would have wanted to be at home.

The night the family brought Za home, in what seemed like an affirmation of their decision, Alessia, Za’s daughter, snuggled next to her mother in bed. In the unfamiliar and foreboding hospital environment, Alessia had been afraid to lie on the bed or even touch her mother. Now, not only was the child happy to be close to her mother, but even more astonishing, Za – who’d been in a coma for a week – opened her eyes and looked lovingly at the child next to her.

The very next night, Za died peacefully.

Turning sorrow into action
As a result of that experience and a series of synchronistic events that followed, Alexandra Drane, president of health-care communications company Eliza Corp., teamed with medical blogger Matthew Holt to form the nonprofit organization Engage With Grace.

Drane and Holt launched a website, called “Engage with Grace: The One-Slide Project,” aimed at making one of life’s most difficult discussions easier by boiling it down to five talking points on a single, easily e-mailed and linked slide that can be shared in all kinds of circumstances, including family dinners. That was in the summer of 2008. Last fall, Engage With Grace launched a coordinated “blog rally” aimed at getting families to talk about death during the Thanksgiving holiday.

Although some families or individual family members may be reluctant to venture into such an emotional discussion at a holiday gathering, Thanksgiving is rooted in strong family traditions, and it may be one of the rare times during the year when families actually sit down for a meal together. Ronald Kessler, a sociologist at Harvard Medical School, puts it this way: “Although it can be uncomfortable to discuss this topic over the dinner table when posed as a hypothetical, this discomfort pales in comparison to the anguish families go through when they have to grapple with the realities of end-of-life decision-making. As a result, the discomfort is likely to be a price well paid.”

End-of-life wishes don’t match reality
The signature offering of the Engage With Grace is the downloadable One-Slide Presentation. On the slide are five questions designed to start the conversation and clarify the wishes of family members regarding their own end-of-life care. Engage With Grace also offers many other resources, including several statistics that help to explain why end-of-life care should not be left to chance, such as:

73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings.

While more than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, only 50% say they’ve actually talked to their families about their preferences.

80% say it is “very” or “somewhat” important to write down end-of-life wishes, but only 36% have actually written out their instructions.

As more families have “the conversation” and more people make their wishes known, the discrepancies in these statistics will narrow. And Engage With Grace will fulfill its purpose: for everyone, as far as possible, to be able to meet death on his or her own terms.

End-of-life discussions benefit patients and caregivers
A study of 332 terminally ill cancer patients at the Dana-Farber Cancer Institute revealed that patients who said they did not discuss end-of-life issues received more aggressive medical care in their final week of life.

Such aggressive treatment was linked to lower quality of life for the patients and their caregivers, who also experienced feelings of regret and an increased risk of depression. Those who reported engaging in end-of-life discussions, on the other hand, were more likely to receive hospice services, and their loved ones reported a better quality of life during bereavement.

Doctor-patient discussions result in less aggressive treatment, lower costs
Meanwhile, the March 9 issue of the Archives of Internal Medicine included a report on a study of 603 terminally ill cancer patients, which was funded by the National Institute of Mental Health and the National Cancer Institute as part of the ongoing Coping With Cancer study.

According to the report, when doctors and patients talked about whether treatment should focus on prolonging life or controlling symptoms, patients were more likely to die at home and spend less time pursuing aggressive treatments. Researchers say these patients had a better quality of life and survived as long as those who did not discuss end-of-life options with their physicians.

The benefits of open communication between doctors and their dying patients include not only physical and emotional comfort, but also cost savings. The cost of providing health care in the last week of life was 36 percent lower for patients who reported having end-of-life discussions with their doctors, and researchers estimate that more than $76 million could be saved annually if just half of the people who die from cancer each year had those discussions with their physicians.

Throughout her illness, Katie had remained upbeat, documenting her experience through blog posts and photos, although the pain was sometimes excruciating. Karen Reider, Katie’s partner of 10 years, stood faithfully by and encouraged Katie to fight. Although doctors warned there would be no cure for Katie, Karen told her – and believed – that the cancer was something they just had to get through, that they would, indeed, get through it together, and that the best of life was yet to come.

When Karen received a phone call in late June telling her that Katie’s tumor was “97% gone,” she was ecstatic but not surprised. This was the result she had been waiting for. Tragically, however, the cancer claimed Katie’s life a mere 16 days later, and when death struck, Karen’s world came crashing down.

Picking up the pieces
Compounding the tragedy of Katie’s death were the two young sons she left behind. As a now-single parent, Karen faced the unimaginable responsibility of caring for her sons while trying to find her own path through grief. Three months after Katie’s death, Karen started to blog. She described the early months of her bereavement in vignettes all too familiar to those who have been there: losing her keys, her wallet, her memory; once-close friends who never call, and more casual friends whose unwavering support she came to rely on.

Grief is a complex emotional response to loss, and each person’s experience of grief is unique. By the end of October, Karen concluded that admonitions to avoid major decisions for a year and other grief-by-number tips were “a bunch of bunk.” She wrote in her blog:

…never in my life have I found myself more open or with these thoughts, feelings, inspirations..and so I say WHY NOT?  Why surpress these fresh ideas when I’m MOST willing to act on them, to live in ways I’ve never imagined, always dreamed…maybe I’m far off..and I welcome your thoughts but I tell you again MEDIOCRITY is NOT FOR ME..I will not settle.

People to see, lessons to learn
How, then, would Karen and her sons navigate through their grief? By hitting the road. Five months after Katie’s death, Karen quit her job as a pricing analyst at BMW, gave away or sold many of her possessions, and left the New Jersey apartment she and Katie called home. She bought a blue 2006 Honda Odyssey, packed up 4-year-old Aiden and 2-year-old Koen, three suitcases, bins of toys and books, and a small high-definition video camera.

This was something Karen and Katie had always wanted to do together; Karen put a black-and-white photo of Katie in one of the van’s visors and clipped Katie’s glasses to the other, and she and her sons set off to travel the country, visiting friends and family and seeing the sights along the way. Recently Karen told an interviewer that, although she will never understand why Karen was taken so young and so tragically, “What I know is that it happened for a reason, and that I have to live in a spectacular way in honor of her suffering so greatly. I can’t just shrivel up and die. I have to do something great.”

As the first anniversary of Katie’s death approaches, Karen and her sons have traveled to Florida, Louisiana, New Mexico, Texas, Arizona, California, and Ohio. She has shot hours of video (http://www.youtube.com/noretakes), which she uploads for Cincinnati filmmaker Robert Parish, producer of the documentary show “In the Tank,” to edit and post on YouTube. Through her blog, she’s been a source of inspiration and strength to countless readers. And on her journey, Karen has rediscovered the things that are most important to her: “What I’m going to take with me at the end is my memories and my experiences, not my things,” she says.