Having The Conversation: Talking About Death At Thanksgiving
A chill in the air reminds us that autumn and Thanksgiving are fast approaching. Although it may seem unholiday-like to talk about death, there is an organization, called Engage With Grace, whose sole mission is to encourage families to have â€œthe conversationâ€ about end-of-life choices, no matter how uncomfortable it may be to begin, and many people involved with the movement suggest that holidays are the perfect time for that conversation to take place.
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 â€œEngage with Grace: The One-Slide Project,â€ 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 â€œknow exactlyâ€ or have a â€œgood ideaâ€ 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.