End-of-Life Hospice Care Underused

WEDNESDAY, July 25 (HealthDay News) -- Too few Americans entering life's final phase are availing themselves of high-quality hospice care, despite the fact that Medicare covers the expense, experts say.

The situation is only going to become more problematic as the nation's "baby boomers" reach the end of their expected life spans in coming decades, according to two articles in the July 26New England Journal of Medicine.

"Hospice care is underutilized -- only a third of Americans die under the care of hospice, and hospice care is free," noted the author of one article, Dr. Gail Gazelle, assistant clinical professor at Harvard Medical School. "Far too often, patients end up in an ICU, rushed to the emergency room, and they end up dying there, when really they would much rather have died in their own home," she added.

According to Gazelle, many of these patients avoid hospice, because they -- and often their doctors -- believe end-of-life care means they have "failed" in the face of disease. "They often view it as, 'OK, someone is telling me to crawl into my bed and die,'" she said. In reality, many hospice patients lead full, mobile and high-quality lives for months, Gazelle said.

There's also the misperception that hospice is expensive. Too often, terminal patients don't realize that Medicare and private insurance cover the full cost of hospice care.

And yet those aren't the only factors keeping terminal patients from the pain management and emotional support that comes with hospice, say oncologists Dr. Ingrid Katz, of Beth Israel Deaconess Medical Center, and Dr. Alexi Wright, of the Dana-Farber Cancer Institute, both in Boston.

In a second journal article, they recounted the story of one Boston-area patient, Joanne Doolin, a 64-year-old mother of three with terminal colon cancer.

Doolin did not choose to enter hospice care. She understood that the service was covered by Medicare, but she also knew that coverage had its limits. As a prerequisite to enter hospice care, Doolin, who was unable to eat on her own, would have been forced to give up intravenous feeding, an expensive service for which she would not be reimbursed. "If she had gone on hospice care and not received [feeding], she would've died within a couple of days," said Wright, a fellow in hematology/oncology at Dana-Farber.

So, Doolin opted to stick with hospital-based chemotherapy and intravenous feeding instead. "Because she got this nutritional support, she lived for more than a month and got to see her daughter get married," said Wright.

Doolin's condition did deteriorate soon after, however. She and her family found themselves scrambling for some kind of dignified, palliative care in the woman's last days. "There shouldn't have been a single barrier to her receiving hospice care the night that she needed it," Wright said. Family and friends in the community worked together to help get Doolin the care she needed, "but her dying experience was a near-disaster," Wright said.

That's because gaps still exist when it comes to items that Medicare, as well as much private insurance, will reimburse for hospice patients. Intravenous nutrition is one such item, as are chemotherapy drugs that might extend -- but not save -- a cancer patient's life. Entering hospice care, "patients often have to give up medicines that are helping to support them, make them feel better, helping them live longer," Wright said.

She believes in an "open access" system where these needs are taken into account. Building such a system might mean the creation of larger hospice organizations, however, so that the cost of expensive therapies could be spread over a larger patient population, Wright said.