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.

Hospice Not Hospital
Although the terms hospice and hospital are rooted in the same Latin word meaning “guest house” or “hospitality,” a hospice is not the same as a hospital. A hospital is a place where sick people go to get well; hospice is a philosophy of care that involves helping terminally ill patients to live the best life they can live for as much time as they have, and giving them the opportunity to die well when the time comes.

Thirty years ago, the hospice movement was in its fledgling stages in the U.S. and virtually unknown among the general public. Today, 1.3 million people are receiving hospice care, most of them in the comfort of their own homes. Hospice professionals and volunteers not only provide pain and symptom control for patients in the end stages of life, but also spiritual counseling, emotional support and practical assistance for patients and their families.

Evaluating Hospice Services
When it comes to choosing hospice care, Bachrach compares the process to finding a college for a high school student – something most folks wouldn’t wait until the last minute to do. Here are some of her suggestions on how to choose the best hospice:

• Visit hospices while you’re healthy. Even if you live for many years, you’ll never know when a parent, sibling or spouse might need hospice services, and when that time comes, your preparation will be invaluable.
• Ask questions. Find out about staffing. Is weekend coverage a problem? How many nurses and volunteers are on call? What is the staff-to-patient ratio? Make sure that some of the hospice’s personnel live within a reasonable distance from you. Also, talk to a few volunteers from the hospice and ask the pointed questions that concern you (for example, how’s the food?). And be sure to ask about the hospice’s bereavement care and other services for family members.
• Visit the inpatient unit. Although odds are that you or your loved one won’t spend any time there, the cleanliness and comfort of the facility may be indicators of the hospice’s overall quality and commitment to patient care.