Experts say 'death-defying' culture contributes to underused Hospice in Illinois

Illinois is failing aging population, draining Medicare dollars with inefficient end-of-life care system, healthcare authorities say

Celeste Jacques, a retired third-grade teacher, wanted to die at home in her own bed, not in a hospital. And she made sure her only child knew it.

University of Chicago doctors told Jacques in December 2006 that she had a weak heart valve and less than one year to live. At age 90, her arthritis and chronically high blood pressure made it too risky to operate. Her daughter, Jackie Pope, didn’t hesitate to enroll her in home hospice.

“I didn’t want her in a hospital with tubes running in and out,” said Pope, who had many conversations with her mother regarding end-of-life care. “She was ready. She was more ready than all of us to let go.”

Jacques spent her final three months in the comfort of her daughter’s Beverly home, where a compassionate team of hospice doctors, nurses and physical therapists visited her regularly, Pope said.

But health care experts said Jacques’ experience was unique.

In Illinois, only one-third of nearly 60,000 chronically-ill Medicare beneficiaries were referred to hospice at the end of life, according to Dartmouth Atlas of Health Care data. The most recent data is from 2001 to 2005. Although Medicare covers most end-of-life costs, the average length of hospice care for these patients was less than 12 days.

“Hospice is really a well-kept secret,” said Dr. Susan Hughes, a gerontologist at the University of Illinois at Chicago. “And the problem is that providers might be reluctant to refer somebody.”

There is no financial incentive to refer patients to Medicare-covered hospice programs in a system where doctors are personally reimbursed for performing services, Hughes said.

As a result, doctors are encouraged to order more tests or complete more procedures at the end of life, even when they are not medically necessary, said Dr. Porter Storey of the American Academy of Hospice and Palliative Medicine.

“When all you’ve got is a hammer, everything begins to look like a nail,” Storey said. “People who make their living sculpting folks really come to think that most people need sculpting.”

Furthermore, aggressive hospital treatment of terminally-ill patients can drive up Medicare costs, according to Storey.

Illinois ranks 12th in the nation for expenditures per Medicare patient during the last two years of life, according to Dartmouth Atlas data. Of the $47,857 spent per patient, 58 percent goes towards hospital care while less than 5 percent is devoted to hospice.

“Medicare pays a lot more money than it would ordinarily because people are getting much more hospital care than if they were able to access hospice care earlier,” Storey said.

In a cure-oriented culture, patients are not accessing hospice earlier because some doctors view it as a last resort, said Hughes, who is also co-director of the Center for Research on Health and Aging at UIC.

“Sometimes physicians have difficulty having a frank discussion with patients and their families about the fact that future efforts really are futile,” Hughes said. “It sets it up for death to be seen as failure as opposed to a natural sequence of events.”

But that shouldn’t be the case in the future as more medical schools incorporate end-of-life curricula, according to Dr. Joshua Hauser of the Buehler Center for Aging, Health & Society at Northwestern University.

“There’s a growing familiarity with dying among nurses, students, residents and health care providers,” Hauser said. “There is a growing realization that [death] is a part of what happens to people and what happens in hospitals.”

Doctors aren’t the only people to blame for delayed entrance into hospice, according to Judith Paice, a cancer-related pain expert at Northwestern Memorial Hospital. Patients are also unrealistic about their mortality, she said.

“We are a death-defying society,” Paice said. “The ads for Botox and liposuction and herbal therapies that make us appear young forever are all over the media, so the message is, ‘you can live forever.’ But we know that’s not the case.”

With today’s advances in life-saving technologies, fewer people are dying instantly, according to Paice. In contrast, patients with chronic illnesses such as heart disease, diabetes and cancer are declining over months and years, creating more decisions for families.

Perhaps one of the hardest decisions is choosing where to die.

“People prefer to die in the home but, because of our misguided fears about taking away hope, we aren’t always honest about prognosis and the realistic outcomes that people face,” Paice said.

Surveys indicate that between 80 and 90 percent of Americans would prefer to die in their homes, according to Paice. But in actuality, most die in a hospital or nursing home.

The minority of Illinois Medicare patients who do enroll in hospice do so for less than two weeks and cannot reap the full benefits of the service, health care professionals said.

“Hospice can be a time of real redemption and renewal, and a time of laughter and joy, because people are focused on what’s really important in their life,” Paice said. “It can be a period of enormous growth and a period of time where family members can pull together.”

As Jacques’ life drew to a close, she often sat on the front porch in full view of her daughter’s peonies. She joined friends and family at “girls’ night” every Friday. And in her final days, Jacques’ extended family traveled from long distances to visit her and say their goodbyes.

The day before dying, Jacques rose from bed to sing her favorite gospel hymn. Pope heard her mother’s voice and knew it was time to let go.

“She was a woman at peace,” Pope said. “She lived her life to the fullest.”