Residents of the 28-square-mile city of Missoula, a growing community in western Montana, have established several notable health care facilities, including St. Patrick Hospital, one of only four medical centers in the United States set up to treat patients with Ebola and other infectious diseases, but the closest health care facility dedicated to hospice care is almost an hour away.

 

About a decade ago, the Hospice Care Foundation (HCF), which started out in 1981 as a volunteer-based fundraising operation in the region that now awards about $40,000 in grants every year to local hospice and palliative care providers, began soliciting donations toward its long-term project of establishing a “Hospice House” for the community.

The nonprofit’s physical requirements for the freestanding palliative care center are modest. HCF is looking for a location where it can offer eight private rooms, a chapel, and office space. Its goal, however, could make a huge difference for patients with terminal illnesses in their community who would like hospice care but can’t afford it.

Under its status as a nonprofit organization, HCF can’t own, operate, or manage a care facility. But that hasn’t slowed its efforts. It has raised funds to pay for construction and is in search of another health care organization in the area that can take on the cost of operating the hospice while the foundation serves as a “sustainability partner,” says Kevi Berger, HCF chief executive officer.

“Our hope is that we would move our offices into the location and pay rent and furnish the part we were renting,” Berger says.

As illustrated by the Hospice House project in Missoula and other efforts around the country that aim to make palliative care accessible and innovative, this medical specialty, which began a few decades ago as acts of compassion and kindness to help patients and their loved ones cope with a terminal diagnosis, has now become a standard in end-of-life care in the U.S. health care system.

But hospice has had to experience some growing pains to get where it is today, and it still faces challenges.

Several studies published in notable medical publications in recent years conclude that palliative care, which can include a range of services from pain management, to speech therapy, to spiritual counseling, delivers profound physical and emotional benefits to patients who are dying and their surviving family and friends.

Even as no one is ready to weigh in on whether physician-recommended hospice care might be a better or more cost-effective alternative to curative therapy, health care payers, private and public, are examining claims data for insight into what happens in terms of cost when a patient with a terminal illness elects to stop curative treatment in favor of palliative therapy.

Meanwhile, the number of patients receiving hospice care is steadily increasing. Patients enrolled in hospice care programs reached about 1.5 million in 2013—an all-time high, according to the latest National Hospice and Palliative Care Organization (NHPCO) data.

In response to increasing reliance on end-of-life care across health care settings, patient advocates, providers, and payers are working to ensure hospice care is accessible to all communities, with care plans redesigned for a range of terminal illnesses beyond the initial cancer diagnosis model of hospice care aimed largely at relieving pain.

These stakeholders also are rethinking how to improve care coordination among health professionals when hospice care is delivered in long term care and other medical facilities. They also are using data to begin to tinker with payment models toward ensuring the managed care model of coverage, largely by Medicare, accurately reflects the cost associated with delivery of hospice care services.

Over the years, there has been much debate about hospice care payment rates. One of the biggest changes to the Medicare payment system in its 30-year history may happen in the next fiscal year.

From its beginnings, Medicare hospice benefit payments featured a fixed rate for each day a patient is enrolled in hospice—regardless of the types of services the patient receives.

“The benefit is designed so that the longer-stay patients can cover the costs of the short-stay patients in a managed care kind of way,” says Judi Lund Person, vice president of compliance and regulatory leadership at NHPCO.

“The hospice was going to have to figure out how to pay for all the health care services under the routine home care rate for patients that lived a short time and patients that lived a longer time.”

After reviewing claims data, the Centers for Medicare & Medicaid Services (CMS) this year is ready to tinker with that formula.

At the end of June, CMS closed the comment period on a proposed rule that would make a significant change in how the agency pays for end-of-life care.

Specifically, the agency has proposed a higher base payment during the first 60 days of a patient’s hospice care stay and a lower payment after day 60.

In its proposal, CMS says that the two different payment rates would more accurately align the daily payment rate with when care is most intense. According to NHPCO data, about 40 percent of patients receiving hospice care in 2013 remained enrolled in the care for more than 30 days.

“Hospices are typically providing more care in the first 60 days of when a patient is admitted, and as a patient is in hospice a little bit longer, the expenses will drop, claims data show, and that’s one of the reasons [CMS] started looking at claims for how to modify the payment structure,” Person says.

Hospice care expert Susan Miller says the proposal addresses concerns CMS had about abuse of the hospice care payment system. She expects the two-tiered payment structure to become a final rule.

“The long stays were getting longer and costlier,” says Miller, a professor of health services, practice, and policy research at the Center for Gerontology and Health Care Research at Brown University School of Public Health. “Under the two-tiered system there would be less incentive to keep people longer.”

Only patients who have a prognosis of six months or less to live are eligible for the hospice care benefit. Nonetheless, in an October 2014 Journal of Palliative Medicine report, Brown University researcher Joan Teno found that 182,000, or about one in five, hospice care patients in 2010 were not only still alive but discharged.

The reasons for discharge varied from patients choosing to resume curative care, improvement in prognosis, or a potentially inappropriate discharge by the hospice to avoid costly hospitalizations, especially when the stay has been so lengthy that the patient exceeds the cap Medicare places on hospice care payment for an individual beneficiary.

“We support these changes as a positive step toward better aligning hospice payments with the U-shaped pattern of hospice visits throughout an episode,” said the Medicare Payment Advisory Commission (MedPAC), in a comment letter on the proposed regulation.

While NHPCO and other palliative care organizations agree with the change, they want to ensure that the profession maintains an accurate accounting of the day a patient enrolls in hospice care.

During the last seven days of a patient’s life, CMS has proposed that in addition to the daily rate, hospice care providers receive a “service intensity add-on payment.”

This add-on benefit would authorize an additional $39 an hour for up to four hours for extra providers, like social workers, but under the proposal, it wouldn’t be available to patients living in long term care facilities.

“The [service intensity adjustment] payment policy encourages visits to patients at the end of life and improves provider accountability,” CMS wrote in a fact sheet on the proposal. “Additionally, the policy begins to address industry and other organizations’ concerns regarding the need for increased payment for more resource-intensive days.”

In recent years, there has been some concern about overlap between nursing care and hospice care services, but both MedPAC and NHPCO oppose excluding nursing care center patients from being eligible for the extra care services.

While the majority of palliative care professionals initially traveled to the patient’s private residence to render care, the settings where patients receive hospice therapies are becoming more diverse. And that’s part of the long-term challenge of regulating the medical specialty as it has evolved during the past three decades.

Hospice care providers are visiting patients in private homes, hospitals, skilled nursing care centers, and assisted living facilities. Care also is delivered in hospice care centers like the one the foundation in Missoula plans to build.

A growing number of patients receive care in long term care settings. In 2013, a third of the 1.5 million hospice care patients received the services in a nursing care center, residential facility, or acute care hospital, according to data from NHPCO.

In many arrangements, the hospice sets up a contractual relationship with a nursing facility to allow its providers to administer care to residents who have elected palliative care. The hospice center pays the nursing facility for the patient’s room and board through reimbursement it receives from Medicaid for patients who are covered under both federal health plans.

Beneficiaries of Medicare who elect hospice care over curative treatments are responsible for the cost of room and board in the hospital, long term care facility, or hospice center.

Researchers and regulators are especially concerned about nursing care center and hospice partnerships in terms of cost of care, the ability of the two medical specialties to work together, and the potential for fraud.

A May 2015 New England study of more than 780,000 patients who received hospice care while residing in long term care facilities between 2004 and 2009 concluded that “the growth in hospice care for nursing home residents was associated with less aggressive care near death but at an overall increase in Medicare expenditures.”

In a 2007 Brown Medical School report on nursing care center and hospice partnerships, which surveyed facilities across the country, hospice expert Miller ultimately found that more communication was needed between the two sets of care providers.

But now, Miller says, a 2013 final rule from CMS that clarified the relationships between the providers has improved levels of communication.

“I think that’s all been addressed in the new regulations for nursing homes and hospice contracts,” Miller says. “The new regulations really address the need for communication.”

But in a 2009 review of 2006 hospice claims data by the Department of Health and Human Services Office of Inspector General found troubling ommissions. The report showed that 82 percent of hospice claims for beneficiaries in nursing care centers didn’t meet at least one Medicare coverage requirement pertaining to election statements, care plans, services, or certifications of terminal illness.

Specifically, one-third of the claims didn’t have on file statements that explained to the patients the nature of hospice care as palliative rather than curative. Sixty-three percent of claims didn’t establish plans of care for their patients with a detailed description of the services to be rendered and their frequency, according to the report.

In 31 percent of claims, the hospice provided fewer services than outlined in the beneficiary’s plan of care. And 4 percent of the claims didn’t have certifications that specified a life expectancy of six months documented by clinical data and signed by physicians, the report said.

The 2013 CMS regulation aims to fix these issues. “The coordination of care is anticipated to result in better outcomes related to quality of care and quality of life for residents,” CMS said.

“We anticipate improved outcomes through more efficient coordination of care between the [long term care] facility staff and hospice staff, a decrease in duplication of services provided, and improved resident care.”

“It’s a work in progress,” Person says about the relationship between nursing centers and hospice care facilities. “There is a set of regulations on the hospice side, there’s a set of regulations on the nursing center side, and in both parts the hospice and the nursing center have ongoing work to do to make sure that they are following the regulations and working together.”

 

And thus new models of care have emerged. The Zen Hospice Project in San Francisco is working on a new model for hospice care that goes beyond keeping a patient sedated. Its six-bed “guest house,” licensed as a residential care facility for people with chronic illnesses, works to help patients face death realistically on their own terms.

Through partnerships, including nursing care center companies, Zen Hospice, led by executive director B.J. Miller, aims to serve as an innovative model for palliative care for health care organizations in the United States and around the world.

Miller, a hospice and palliative care specialist at the University of California, San Francisco Medical Center, has said that pale works with a patient’s sense of perspective about his or her illness.

“Our mission is to help change the experience of dying,” Miller wrote in a post on the Zen Hospice Project’s Twitter account, @zenhospice, which has more than a thousand followers. “As long as we have our senses, even just one, we have the possibility of accessing what makes us feel human and connected.”

His passion for palliative care comes from the personal experience of losing both of his legs below the knee and half of an arm below the elbow after surviving an electric shock in a train accident. The near-death experience gave Miller an understanding of controlling pain while realizing the things for which a person near death has to live.

“For most people, the scariest thing about death isn’t being dead; it’s dying, suffering,” Miller said in a speech at the TED2015, a weeklong conference featuring innovative thinkers working in various industries. “At the health care systems level, so much of the suffering is invented.”

The hospice’s physical surroundings are designed to stimulate patients’ senses—from the smell of freshly baked cookies to the sight of blooming flowers. In its mission to redesign the process of dying, Zen Hospice Project also is developing information resources for families and caregivers, offering training for staff and volunteers, and exploring other partnerships to expand its model into other health care facilities. People seem to like the care enough to write reviews about it on social media.

“Our childhood friend is in there now with cancer,” wrote Diane Parrott in an April 2015 post on the user review and recommendation website, Yelp. “She’s happy to be there, and it’s just gorgeous inside, and the staff are wonderful … just a very comforting zone area with a beautiful garden out back.”