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 26 New 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 Dr. Ingrid Katz, an infectious disease specialist at Beth Israel Deaconess Medical Center, and Dr. Alexi Wright, an oncologist at 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.
But Gazelle stressed that hospice continues to meet or exceed the expectations of terminally ill patients and the people who love them. In fact, one recent survey found that 98 percent of family members said they would strongly recommend hospice care to others in need.
And hospice isn’t just focused on dying cancer patients. According to the National Hospice and Palliative Care Organization, about 40 percent of U.S. hospice admissions now involve patients with end-stage heart disease, dementia, lung disease or stroke.
Still, “people need to understand that hospice is about living,” Gazelle said. “It’s about living as well as you can when life has dealt you a bad deck of cards. Having your dignity, your quality of life, as little physical and emotional suffering as possible — that’s what hospice can do for people.”
Hospice care focuses on the patient, of course, but also on those affected by his or her illness, Gazelle added. Counseling and support is made available to caregivers and can last for months after the patient’s death. “To know that their family is going to be attended to is critically important for people near the end of life,” said Gazelle, who is also president of the medical advocacy group MD Can Help.
But the fact remains that a full third of hospice patients enter the service only in the last week of their life — even though Medicare covers six months of this type of care. “That’s very, very sad,” Gazelle said.
She and Wright believe things are about to change, however.
“Baby boomers are going to turn all of this around,” Gazelle said. “They are so empowered around their health care and the health care of their loved ones — they’re going to push hard to make sure that their needs are met.”
Wright agreed. “I think that we will see the reimbursement structure change dramatically over the next decade,” she said. “Baby boomers have received the best medical care imaginable for their entire lives — why should their death be any different?”
Find out more about hospice and palliative care at the National Hospice and Palliative Care Organization.
SOURCES: Gail Gazelle, M.D., assistant clinical professor, Harvard Medical School, and president, MD Can Help, Boston; Alexi Wright, M.D., fellow, hematology/oncology, Dana-Farber Cancer Institute, Boston; July 26, 2007, New England Journal of Medicine