Special Report: Expanding Hospice to Alternative Sites

National trends show a need to link hospice care and long-term facilities

Marketing to nursing homes requires persistence

(Editor’s note: This month, we begin a two-part series of articles on how hospices can extend their expertise. In this issue, we examine potential links between hospice and long-term care facilities. The December issue will discuss how to make the most of partnerships with assisted living facilities.)

Increasing numbers of elderly Americans spend their last days in nursing homes, and very few benefit from hospice services, experts say. Researchers and national health care experts predict that the number of people who die in nursing homes or other long-term care (LTC) facilities will continue to rise in coming decades as the baby boomers age. Already, many states are seeing an increase in nursing home deaths at the same time that the percentage of deaths in inpatient settings is falling, and some studies estimate that as many as 20% of all U.S. deaths take place in nursing homes.

"What needs to change is the way we view nursing homes," says Diane Hoffmann, JD, MS, professor of law, associate dean for academic programs, and director of the law and health care program at the University of Maryland School of Law in Baltimore. Hoffmann spoke about hospice care in nursing homes at the National Hospice & Palliative Care Organization (NHPCO) conference, held Sept. 30 through Oct. 2 in Washington, DC. "Nursing homes have not acknowledged that they are places where people die, and more and more people are dying in nursing homes," Hoffmann says. "Forty percent of people over age 80 are dying in nursing homes."

In a survey of nursing home directors, a majority said there were nursing home residents in need of hospice care who were not receiving it, she says. Hoffmann has investigated the reasons why nursing homes have underutilized hospice, and she found that the existing barriers are related to cultural and institutional differences. "Nursing homes and hospice are very different animals in terms of missions and goals and how they operate," Hoffmann says. "Nursing homes tend to be more bureaucratic, while hospices are more democratic, using families and volunteers."

While nursing homes focus on custodial care, rehabilitation, and activities of daily living (ADLs), hospices focus on pain management and open communication about death and dying, Hoffmann adds. Accordingly, one of the chief obstacles to partnerships between nursing homes and hospices has to do with ideas about pain medication. "It seems that nursing home staff fear using large doses of medication and feel nursing home surveyors may accuse them of overmedication," Hoffmann notes. "Also they have concerns about being cited for substandard care if a resident is not eating or is malnourished or dehydrated," she says, "whereas hospice regards a patient’s unwillingness to eat as a natural part of the dying process."

Another obstacle involves the regulatory gray area created about five years ago when the Office of Inspector General came out with a fraud alert involving hospices being referred patients in nursing homes, Hoffmann says. The alert noted that people were being referred from nursing homes to hospice when they didn’t fit the eligibility criteria of having a life expectancy of less than six months, Hoffmann says. "This alert reduced physician willingness to refer some patients to hospice, especially with non-cancer patients who had conditions where the ability to predict or estimate death was much more difficult because diseases didn’t have the same trajectory as cancer," Hoffmann adds.

Although lawmakers have added some flexibility to this criterion, the damage has been done because of a few high-profile cases in which Medicare tried to recoup money from people who had lived longer than six months while in hospice care, Hoffmann says. "Hospices appealed the decision, and Medicare lost," Hoffmann says. "An administrative judge said this wasn’t an error, and you can’t penalize people for living too long." Still, these types of cases have left a distaste among some in the industry for any kind of referrals that might trigger a Medicare investigation.

Another regulatory concern involves the overlap of hospice and nursing home services, Hoffmann notes. "There’s the question of who should be doing the feeding and bathing of patients, and there may be a violation if either hospice or the nursing home cut back on services because the other’s doing it," Hoffmann explains. This gray area can cause confusion because while a nursing home’s mission may include ADLs, such as bathing and feeding, a hospice may include these services as part of an array of aide services that are offered for comfort to dying patients, Hoffmann says.

"A lot of nursing home staff we spoke to said, Hospice is just duplicating what we’re doing,’ and so hospices in response said, Rather than duplicating what they’re doing, we’ll do aromatherapy and massages and alternative-type healing approaches that a nursing home is not paid to do.’"

Despite the challenges, there are many positive reasons why hospices may desire to form partnerships or collaborative relationships with skilled nursing facilities, experts say. For instance, some research indicates that nursing homes struggle with palliative care and pain management, which means there is a long-term growth possibility for hospices that would like to form collaborative relationships with nursing homes.

"I think the potential for growth is definitely there," says Gwendolyn Burk, MSS, MEd, LCSW, manager of the assisted living and skilled nursing facilities team at the Hospice of North Central Florida in Gainesville. Burk spoke about collaboration with skilled nursing facilities at the NHPCO conference. Likewise, hospices could take advantage of growth opportunities through developing partnerships with assisted living communities.

Hospice care in assisted living communities and LTC facilities probably won’t replace hospice home care, but it’s still an important option for growing hospices, says Karen Carney, director of community and provider relations at Hospice of the North Shore in Danvers, MA. Carney spoke about hospice and assisted living communities at the NHPCO conference. "Hospice was designed to care for people at home and keep them home, and that’s our first option," Carney says. "But the reality as we move forward is that for many people the home is not viable, so having good relationships with assisted living and skilled nursing facilities enables all of us to work together as someone’s needs change."

Hospice of the North Shore began working in SNFs about five years ago, but it wasn’t until a year and a half ago — when the organization put a major emphasis on increasing its work with long-term care facilities — that referrals increased significantly, Carney says. The hospice’s daily census rose from 120 to more than 300, and long-term care referrals played a major role in that growth, Carney says.

"We put a lot of emphasis into long-term care facilities and how we could be a better service to them," Carney says. "And now it’s become comparable to our home health services, and we have two designated teams."

The need for hospice care in assisted living communities is increasing, along with a need for a specific and unique approach that might work best in that environment, Carney says. "A lot of trends suggest more people are going to be living in assisted living communities," Carney says. "But many hospices overlook them."

Despite the opportunities for hospice growth in partnerships with LTC facilities, both hospices and LTC facilities have experienced barriers to forming relationships, says Marion Keenan, MA, MBA, president of Coastal Hospice in Salisbury, MD. Keenan also spoke about hospices and nursing homes at the NHPCO conference. "I think we have so far to go," Keenan says.

The first of many barriers is convincing LTC facilities of the need for the kind of specialized end-of-life palliative care that hospices provide. "More and more nursing homes are indeed looking at palliative care," Keenan adds. "But when you pay attention to all that’s involved in palliative care, the intensive social interaction you have with interdisciplinary teams and just the reality of staffing in those nursing facilities on volunteer levels, even if the concept of palliative care takes hold, it would be hard for them to replicate what you can do in hospice."