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More terminally ill choosing to die at home, report finds

Updated: September 24, 2012 6:25AM

When asked, most Americans say they’d rather die at home than in a hospital.

A government report suggests that’s happening more than in the past, though nearly 40 percent of deaths still occur in hospitals — a shift that experts say has been fueled by a greater acceptance and availability of hospice care.

The percentage of at-home deaths increased to one-fourth in 2007, from one-sixth in 1989, according to the report by the National Center for Health Statistics.

The figure would be higher if the National Center for Health Statistics had included nursing homes in its definition of dying at home, as many experts do, since 28 percent of people over 65 died there in 2007.

Dr. Chris Feudtner, lead author of a 2008 study that observed a similar shift in where children die, said there’s been a “sea change” over the past two decades, not in people’s attitudes about dying, but in the use of at-home hospice care.

“If you look back, most Americans have long said that they wouldn’t want to be in the hospital when they die,” said Feudtner, an associate professor of pediatrics at the University of Pennsylvania School of Medicine.

“It’s not clear there’s been a radical shift in that point of view. It’s been more that the conversations are becoming more frank and forthright with people about what they’re up against. . . .

“More people are being given the opportunity to think about and set forth their wishes in advanced directives. And then more people are having access to palliative and hospice services.”

In hospice care, caregivers focus on making the terminally ill patient as comfortable and pain-free as possible. Hospices also provide support to family members.

The number of Medicare-certified hospice agencies in the United States grew 20-fold between 1985 and 2008, according the federal Centers for Medicare and Medicaid Services.

At the same time, advances in technology have made it possible for the terminally ill to get care at home that they once could get only in a hospital.

Meanwhile, people generally have become more accepting of hospice care, in part because of studies showing that hospice patients typically enjoy a better quality of life in their final days than terminally ill patients who received more aggressive care, said J. Donald Schumacher, director of the National Hospice and Palliative Care Organization.

At least one study has even suggested that hospice patients live longer on average than non-hospice patients, particularly those with pancreatic cancer, lung cancer and congestive heart failure.

Still, the disconnect between where people say they want to die and where they actually do reflects many doctors’ continued reluctance to discuss end-of-life care with their patients, said Mary Runge, president of Horizon Hospice and Palliative Care in Chicago.

“We still have a problem with physicians not being honest with patients and wanting to continue every treatment there is or not wanting to have the conversation,” Runge said.

Mary Williams, 59, of Hyde Park, chose hospice care through Horizon after being told by her doctor that she had a year and a half to live.

Williams, who has esophageal cancer, said it’s hard going to bed every night “knowing that I might not wake up,” but being at home with her husband and daughter makes it more bearable.

“All that chemo … and putting other things in my body, on top of what I already have, is not going to change the facts, either way,” Williams said. “I decided that I might as well be as comfortable as I can within myself.”

Similarly, Judy Griffin, 60, and her family decided that hospice care was the best option after a grueling year and a half of chemotherapy failed to rid her of ovarian cancer. Undergoing another round of chemo would have meant risking an infection Griffin’s body couldn’t fight off, her doctor told the family.

For almost a month, nurses from VNA Hospice came to Griffin’s home in Valparaiso three times a week, advised her husband and two daughters on how to provide basic care and even gave the family books on how to discuss Griffin’s passing with her two young grandchildren, Griffin’s husband, Mike Griffin, said.

“They really helped make us feel more comfortable about everything we were doing,” he said.

Griffin, a longtime baton twirling instructor, died Feb. 27 while watching the Academy Awards with her husband and daughters. Her breathing became heavy near the end of the broadcast as New York City’s famous PS22 Chorus was singing “Somewhere Over the Rainbow.” Then her face relaxed, and she was gone.

“It was almost like she choreographed it,” Mike Griffin said, noting that his wife loved musicals. “It was just the three of us in the family room with her. It was nice, as nice as it could be.”

Contributing: Maureen O’Donnell

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