Now's the time for hospices to seek ties with hospital palliative care initiatives
Suspicion must give way to outreach, collaboration
The hospice movement has shown tremendous growth, and opinion polls indicate that Americans would rather die at home. Yet, an estimated 60% of deaths in this country still occur in acute care hospitals. These facts combine to make hospitals an obvious and largely untapped setting for advancing hospice's mission of improving the experience of dying patients, say industry insiders.
Numerous hospital-based palliative care initiatives are now under way or in development across the country. These initiatives take varied forms, ranging from consulting teams or floating medical services to designated palliative care units. The relationships of hospital initiatives with existing, community-based hospice providers also vary. However, leaders in this emerging field say there are opportunities for hospices to reach out and get involved.
In most cases, the community hospice is unlikely to directly control an inpatient palliative care program. (An exception is profiled in a related article on p. 108.) Instead, the hospice's role may lie more in education and consultation, or in carrying the standard for excellent, patient/family-centered, holistic palliative care. (Tips for maximizing hospice's influence are outlined on p. 109.)
"It's a national trend, from the calls I get. Both hospitals and hospices, from either end, are looking to make this bond happen," says Connie Zuckerman, JD, with the United Hospital Fund (UHF) in New York City. UHF's Hospital Palliative Care Initiative, which has funded innovative palliative care projects at five New York hospitals, earlier this year issued a major report on its initiative.
Zuckerman says the momentum for palliative care has picked up within the past year, along with interest by hospices. "But it's obvious, either hospices view this as an opportunity or as an inevitability - and they're looking to be in from the ground up."
Experts also point out that the implementation of hospital-based palliative care typically results in increased and more timely referrals to community hospices, because it focuses the institution's attention on end-of-life issues overall. In addition, such programs are unlikely to pose a direct competitive threat, since their patients likely would not have reached hospice anyway. Further, the realities of hospital reimbursement these days do not permit unnecessarily prolonged hospital stays.
What is the palliative care trend?
The first challenge in understanding this emerging trend is to try to define it, and that is difficult to do, because the term is used in different ways. Palliative care has been defined by groups ranging from the World Health Organization (WHO) in Geneva, to the National Hospice Organization (NHO) in Arlington, VA. More recently, the Palliative Care Task Force of the Princeton, NJ-based Robert Wood Johnson Foundation's Last Acts campaign published its Precepts of Palliative Care, building on earlier definitions.
Generally palliative care is understood as being most relevant for patients with far-advanced, incurable illness, although it has applications earlier in the course of illness, as well. Some groups have turned this emphasis around and argued that palliative care, with its holistic focus on comfort and quality of life, should be an important part of medical care for all patients, at all times. Palliative care also has another dimension, referring to an emerging specialty of palliative medicine, which applies the best of medical art and science to promote comfort for seriously ill patients.
Confusion spreads in the application, especially when the term is applied to any non-hospice program of care that serves dying patients, or to a program for the dying that wishes to obscure its association with death by using a name that is not well-understood. Many of the new palliative care programs target patients who, while incurable, are not yet ready for hospice, have more than six months to live, or otherwise don't fit hospice criteria. Others try to blur hospice's abrupt transition between curative and comfort-oriented care, or to provide bridge services that have become problematic for certified hospices in light of increased compliance scrutiny and anti-kickback concerns.
Hospice leaders insist that genuine palliative care should mean more than just a revamped pain service or glorified symptomatology; it must be interdisciplinary and address the patient's psycho-social and spiritual realms, as well.
'Hospices need to develop new products'
Another observer who is well-situated to describe what's emerging is Ira Byock, MD, hospice veteran and research professor at the University of Montana in Missoula. In his role as program director of the Johnson Foundation's $12 million Promoting Excellence in End-of-life Care program, Byock pays site visits to applicant finalists for the new program's grant awards, which should be announced soon.
"We're starting to pick up an idea of what's going on out there," he says. "A lot of different innovation is going on. Within many communities and hospital systems there seem to be champions emerging who are working to improve care for people for whom cure is no longer possible and life prolongation offers diminishing returns. The shape it takes varies from community to community, and it tends to be fitted into whatever system was already in place," he explains.
"It's very clear that hospices need to develop new service products, and find ways to integrate 'hospice' services within the fabric of health care," Byock says. "Hospices need to meet patients and families much earlier in the course of care, fostering transitions for them, providing expert symptom management, palliative care, and appropriate counseling all along the way. And there are opportunities for such new products."
For some of the new innovative palliative care programs, hospice's opportunity to participate has already passed, Byock says. For some hospices, the lack of resources, of administrative infrastructure, or of attention to standards and quality will hamper their ability to innovate. "Clearly, hospice is the best example we have of comprehensive palliative care; it's also clear that the quality of hospice is quite variable," he says.
"As we have traveled and looked at programs across the country, we have asked if the project that calls itself palliative care reflects the precepts of palliative care as defined by Last Acts and WHO. Is it more than just symptomatology? And what we are finding is that it is possible to do it - and possible for academic centers, managed care organizations, and integrated health systems to make a commitment to real excellence in end-of-life care."
What is the source of the tension?
Yet the opportunities for hospice and hospitals to work together toward better end-of-life care do not come without a price. "I'm disturbed by the tension I sense between the two communities," says David E. Weissman, MD, director of the palliative care program at the Medical College of Wisconsin in Milwaukee. "The palliative care movement has grown out of the identification that regulations and financial restrictions of hospice aren't meeting the current need. I see them as complements, not competitors, and I wear both hats," says Weissman, who is also medical director of a local community hospice. "Every hospital-based palliative care program needs to be associated with one or more community hospices - but where are they not? I haven't seen any hospital palliative care program that hasn't increased community hospice referrals. I know we do."
"Hospices have been defined by the Medicare benefit, but in many respects they were closed to doing it any other way, anyway," says Gail Aaron, RN, director of the palliative care program at Providence Hospital in Washington, DC. "I think they now have an opportunity to become more open." Aaron's palliative care program, now 10 years old, was formed in lieu of starting a traditional hospice. "But we work closely with hospices in the area," she explains. "Hospice as an organization and as an industry can look to broaden its scope - opening its mind and heart - to develop liaisons and working relationships with palliative care programs, rather than looking at us as competitors. I've been trying to get statistics to show that the patients we've referred to hospice have longer lengths of stay," Aaron says, although getting the data from the hospices has proved difficult.
"The tension is between how do we keep the heart of hospice, but get beyond serving only a small percentage of dying patients?" says James Hallenbeck, MD, associate professor of medicine at Stanford University and medical director of hospices at Stanford and the Veterans Administration Medical Center, in Palo Alto, CA. While there is reason for concern, the palliative care trend fundamentally is a good thing, Hallenbeck says. The concern is whether hospice's "revolution is being co-opted. Are we selling out to traditional medicine, with its focus on technology, and forgetting the principles of hospice? Is that a reason for concern? You bet!"
Many hospices today are on the defensive, because of Operation Restore Trust and other constraints, and so they don't have energy left over for innovation or to lead in the development of end-of-life care in the hospital. "The end-of-life leaders I've seen are not anti-hospice. All I see them saying is that we need something new," Hallenbeck says. "I believe the development of palliative care may be the salvation of hospice, which is dying on the vine because patients are referred too late. But I'd be happier if I saw hospices getting on board."
In most cases, hospices will not play the lead role, he adds. "Hospice's role may be to remind the institution to keep its principles straight. If hospices see palliative care being practiced without heart, without attention to psycho-social concerns, they need to point it out." Hallenbeck emphasizes the fine line between whining and constructive criticism, and urges hospices to "keep their eye on the prize, which is improving end-of-life care. They'll be the keepers of the flame. People will turn to them for inspiration."
For more information on the UHF's Hospital Palliative Care Initiative and its recently published report, call (212) 494-0776.
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