Talking turkey about death

Bloggers urge a holiday confab on terminal care

Alexandra Drane (left) launched a campaign to spur discussion of end-of-life wishes after her sister-in-law Rosaria Vandenberg died at 32. The family defied medical advice and brought Rosaria home to die. (Josh Reynolds for The Boston Globe)

When Rosaria Vandenberg lay unconscious in the hospital, a malignant brain tumor stealing her life, her brother decided to overrule doctors' advice and bring her home to die. He believed, but wasn't sure, that this was what she would have wanted. The truth is, when she was conscious, her family had never asked.

Back at home, Vandenberg's 2-year-old daughter, who had been afraid to touch her mother in the hospital, snuggled next to her in bed. Rosaria opened her eyes, the first time in a week, and took in the sight. She died the next night at home.

Dying wishes are hardly traditional Thanksgiving conversation fare. But Vandenberg's sister-in-law, with the backing of some leading Massachusetts healthcare executives, is determined to put end-of-life questions on the holiday agenda.

Today they are launching a "blog rally" aimed at getting families to talk about death during the holiday gathering. It's an unusual Internet collaboration extending to independent bloggers across the country, who all plan to feature identical postings about the project over the holiday weekend. The word spread quickly through the blogging world over the last few days, in preparation for today's posts.

Now comes the question of whether families will show similar openness to the topic during their Thanksgiving conversations.

Thanksgiving is, of course, a holiday rooted in family connection; it may be hard to imagine bringing up the issue of death as the turkey is passed. And in some families, straying into controversial territory comes with a risk of dredging up strong emotions.

"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," said Ronald Kessler, a sociologist at Harvard Medical School. "As a result, the discomfort is likely to be a price well paid."

Alexandra Drane, Rosaria's sister-in-law and the moving force behind the initiative Engage with Grace (engagewithgrace.org), advises: "Once you start talking about it, it's easier than you think."

Drane, 37 and the mother of two young children, had spent her adult life coming up with and talking about ways to make healthcare more accessible for consumers. Yet after the 2004 death of 32-year-old Rosaria - known to her family as Za - Drane realized that she had not thought about the kind of healthcare she would want at the end of her life, much less discussed it with family.

"I had never had this conversation with my mom, and we're very open," Drane said.

Such a conversation would have helped guide the family in the final days of Rosaria's life. "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.

But her family could not get comfortable with the idea of Rosaria dying away from home and the daughter she so loved. In the end, the connection made between Rosaria and Alessia in the final hours was more than enough to convince the family they had made the right decision.

Drane wanted others to know that, and ultimately launched Engage with Grace. The website poses five questions about end-of-life choices - such as, would you prefer to die at home? In a hospital? - and asks visitors to answer the questions and to be able to answer for their loved ones. There are links to resources about legally binding documents that spell out one's end-of-life wishes. And there are sample "conversation starters" to help open the discussion with friends, family, and colleagues. One suggested approach is: "I want you to be able to communicate for me if I am too sick to speak for myself and not 'second guess' yourself."

Still, Drane, who is president of a Beverly software company, was nervous when she decided to end a business presentation last month before hundreds of executives by telling Rosaria's story and introducing Engage with Grace.

"What was amazing was how many people came up to me afterward and wanted to tell me their story," she said. "It hit me that a lot of people in this audience do a lot of talking, do so many presentations."

Drane asked each one to agree to donate just two minutes at the end of their next presentation to introduce the Engage with Grace online campaign or to talk about it with a friend over dinner or at a book club.

Charles Baker, CEO of Harvard Pilgrim Health Care, wasn't at that conference, but heard about Drane's presentation, went to the website, and was inspired to write about it a couple of days later on his blog, www.letstalkhealthcare.org. Baker said he will join today's blogger rally because so many people flinch at the subject that it bears repeating.

"Unless you force yourself into the conversation, it's not a place most people want to go," said Baker. "I am a big believer in having people try to sort this stuff out in advance."

Bloggers across the country have responded positively to the suggestion of posting the Engage with Grace message.

"This has just taken off," said Paul Levy, president and CEO of Beth Israel Deaconess Medical Center in Boston. Levy is coordinating the blogger rally and is featuring the message on his blog, runningahospital.blogspot.com.

Surveys indicate most Americans are squeamish about confronting their mortality. A 2005 poll of Massachusetts residents age 35 and older found that only about half had communicated their end-of-life wishes with a spouse or partner. Only 37 percent of those surveyed had completed a healthcare proxy designating an end-of-life decision-maker.

High-profile cases have dragged the subject of death and dying out of the closet. Hordes of Americans took to the Internet seeking information about living wills and healthcare proxies during the Terry Schiavo showdown, as members of her family battled in 2005 over whether to remove the brain-damaged woman's feeding tube.

The Hospice & Palliative Care Federation of Massachusetts notched a fourfold increase in the number of pages downloaded from its website then. Today, the organization's leaders say, the website traffic is down to about half that amount.

Perhaps more striking, said Dr. Stephanie Patel, medical director of Hospice of the North Shore, is that even many elderly patients who enter hospice care staring down death haven't discussed their end-of-life care wishes with their family or given them any written directions.

The Engage with Grace project, Drane hopes, may finally "help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we lived them."

Kay Lazar can be reached at klazar@globe.com