Updated: Apr 3, 2019
November is National Hospice and Palliative Care Month, and the 2018 theme of “My Hospice” offers an important opportunity to examine the state of hospice in the U.S., and the challenges and opportunities that hospices face amid a national movement to expand palliative care.
The emergence of community-based palliative care models that nobly strive to make palliative care accessible further upstream has had an impact on hospice in several ways, experts say. Many hospices are evolving or expanding to add palliative care services that allow them to effectively support patients early in the course of serious illness, and through the end of life.
Still, some hospice leaders fear the rapid growth may lead to uneven quality in the services being delivered. In addition, some clinicians opt to refer only to palliative care, rather than hospice, to delay or avoid having to tell a patient that his or her condition is terminal. That can shift resources away from hospice, and leave patients without the full level of support they need as end of life approaches.
Physician Training is Key
Nonprofit, community-based hospices may be especially vulnerable in the changing marketplace when referrals drop, says Samira Beckwith, CEO of Hope Healthcare in Fort Myers, Fla.
“I’ve had several doctors tell me recently, ‘Now I don’t have to refer my patients to hospice. They get just enough services from these other providers and I never have to have the conversation (about a terminal prognosis),” says Beckwith. “Patients and families don’t know what they’re not getting. (They’re) happy to just get something.” She says Hope has already seen a decline in referrals and length of stay that she attributes to this type of poor communication and a lack of understanding about what palliative care and hospice provide.
Better education is the answer, other experts say, including training that helps clinicians appreciate the specialized skills and approaches required by palliative care, understand the differences between palliative care and hospice and when to refer to each, and how to communicate difficult news to patients and families.
“Palliative care and hospice each provide vital services that work hand-in-hand to support patients through every stage of serious illness, from diagnosis until death,” said Jennifer Moore Ballentine, Executive Director of the CSU Institute for Palliative Care, which offers continuing education for healthcare professionals seeking high-quality training in palliative care. “The really important thing is meeting patients and families where they are and delivering the level of care that most effectively addresses their physical, psychosocial, and spiritual suffering. That may be palliative care, or it may be hospice. At best, it’s palliative care now, with a timely transition to hospice when curative care is no longer effective or desired.”
Problems with Medicare
Another barrier facing hospices today centers around Medicare rules and regulations that some hospice professionals say unfairly penalize or withhold payment at a time when more and more Americans need end-of-life support and services.
According to the National Hospice and Palliative Care Organization’s most recent “Facts and Figures on Hospice,” a total of 4,382 Medicare-certified hospices cared for 1.43 million Medicare beneficiaries in 2016—representing nearly half of all Medicare decedents that year. That’s a level of penetration that the founders of the hospice movement in the 1970s could only have dreamt about.
Meanwhile, average length of stay on the hospice benefit has declined slightly in recent years, from 73 days in 2013 to 71 days in 2016. And nearly three in 10 hospice patients receive services for one week or less—the final seven days leading up to their deaths.
Even so, Medicare Administrative Contractors and an alphabet soup of other CMS-contracted investigative agents and auditors are scrutinizing hospice bills for enrolled patients to make sure the documented prognosis qualifies for Medicare hospice coverage and that the patient’s health is declining with sufficient rapidity to continue qualifying for that coverage.
Former hospice employees are pursuing high-profile, well-publicized whistleblower lawsuits that assert too many hospice admissions are insufficiently terminal. To further complicate this scrutiny, some hospice agencies don’t live up to the ideals with which the movement was launched.
Improving the Medicare Hospice Benefit
Another troubling problem, Beckwith says, is the interpretation by Medicare regulators that patients have to be demonstrably in terminal decline in order to be admitted to hospice or to remain on service—despite the lack of any statutory justification for this interpretation. “That has added to confusion in our community,” Beckwith says. “Hospices are discharging patients or not recertifying them because they are not ‘declining’ fast enough.”
The National Partnership for Hospice Innovation (NPHI)—a coalition of leading nonprofit hospice administrators, including Beckwith—recently met with CMS administrator Seema Verma to talk about government regulation of the Medicare hospice benefit.
Some of what the government is doing has no rhyme or reason, says Mollie Gurian, NPHI’s Washington, DC-based chief strategy officer. “This growing emphasis on ‘decline’ as a rule of thumb for denial is flat out not consistent with the hospice statute,” Gurian says. “We understand there are bad actors in hospice care. We’ve read the terrible stories in the press. But our response to the government is that you should figure out your real target.”
She says government agencies are not focusing on the specific hospices that provide substandard care, an observation with which Ballentine concurs. “With one glance at the Medicare claims data, you can immediately see who is likely coloring outside the lines,” notes Ballentine. “Why state and federal regulators don’t just go after the bad guys is a mystery to me.” Instead, regulators are penalizing leading, ethical community-based hospices along with the sloppy or fraudulent ones. Many compliant hospices, after years spent waiting for a hearing, get the vast majority of their claims denials overturned on appeal by federal administrative law judges, but in the meantime have suffered financially.
Hospices Must Evolve to Survive
Gurian says she understands Beckwith’s concerns about the new models of serious illness care, especially in the absence of agreed-upon definitions and regulations for palliative care, but believes community-based, nonprofit hospices should be the providers of those upstream services. NPHI members are focused on developing their own multiple lines of business, building on hospice’s core competencies to become the providers of community-based palliative care in their communities. “These programs are looking at how they can mobilize what their staff are good at: having ‘the conversation’ earlier in the course of illness and receiving those referrals in order to transition patients and families along the continuum of care, including to hospice when appropriate,” Gurian says.
She credits Beckwith, whose hospice was one of the first to be licensed as a PACE (Program of All-Inclusive Care of the Elderly) provider, as having “the epitome of a vision for how hospices can develop new programs and services to care for more people in the last chapters of life. That’s what we’ve all been thinking about. A lot of these innovations could turn out well, but only for hospices that embrace the change,” Gurian says. “We think that only providing the [services required by the] Medicare hospice benefit may not work out as an organizational strategy for hospices in the long run.”
Larry Beresford is a freelance writer covering issues in hospice and palliative care.