Guest Column: Hospice vs. palliative care: What’s the difference?
Hospice industry shifts focus
By Larry Beresford
Alameda, CA
Palliative care, a term that is strikingly unfamiliar to the health-consuming public but increasingly prominent for hospices, hospitals, and other health providers, was a central theme of the recent National Hospice and Palliative Care Organization (NHPCO) Management and Leadership Conference.
Titled "Hospice and Palliative Care: Evidence, Advocacy and Action," the Dec. 3-5 conference in Arlington, VA, featured presentations on outpatient palliative care programs, hospital-based consulting services, new policy proposals, and research on palliative care trends and initiatives. I co-presented one of the sessions, addressing hospital-hospice collaboration in palliative care development, based on my research for a project sponsored by NHPCO and the Center to Advance Palliative Care (CAPC) at the Mount Sinai School of Medicine in New York City. (The fruits of that project include a technical assistance monograph on hospital-hospice partnerships, now available on the two sponsoring organizations’ web sites [www.nhpco.org and www.capcmssm.org] and soon to be mailed to all provider members of NHPCO.)
Just as important as the palliative care content presented at NHPCO’s conference was the growing comfort level with the concept, as evidenced by attendees from hospices around the country — some of whom previously may have feared it as a threat to hospice’s primacy in the delivery of end-of-life care. However, the actual nature and forms of palliative care are less clear, which can be seen in the careful attempts to define it in many of the conference presentations.
Two years ago, NHPCO changed its name from the National Hospice Organization, mirroring similar changes by the national organizations for hospice doctors and nurses, by several state hospice organizations, and by increasing numbers of local hospice programs. However, hospice professionals may well wonder whether adding "palliative care" to the names of hospices and hospice organizations acknowledges the existence of two distinct, parallel models of end-of-life care. Or does it point instead to a new, comprehensive, integrated care model in which hospice is part of a broader continuum of end-of-life care? And is the new focus on palliative care good for patients — and for hospices? The jury is still out on some of those questions, but I believe some important implications are starting to emerge:
1. Hospice currently is the only large-scale, national provider of end-of-life care, even though palliative care development is under way in hundreds of hospitals across the country. U.S. hospices served 700,000 terminally ill patients in 2000, according to NHPCO data, representing one-quarter of all Americans who died from any cause that year. The number of hospice admissions continues to rise, even though providers complain about the problems resulting from short lengths of stay. It only makes sense for existing hospice programs to play a significant role in new palliative care development, based on their broad experience in caring for dying patients.
2. Hospice is palliative care, as hospice standards have emphasized since the movement’s early days, but not all palliative care is hospice. There are many reasons — regulatory, financial, institutional, cultural, or personal — why some patients with life-threatening illnesses and a need for palliative support might not be enrolled in hospice care, even when they have fewer than six months to live. Meanwhile, some hospices are developing new palliative care service lines while insisting that Medicare’s definition of hospice care does not encompass all that hospice is or should be. However, even the broadest definition of hospice cannot incorporate all current palliative care development, and not all patients who need palliative care can or will choose the hospice option.
Earlier access to palliative care a challenge
3. Palliative care is an appropriate service from the point of diagnosis of a serious or life-threatening illness, according to the latest definitions, but palliative care providers are challenged to promote access earlier in the disease trajectory. Palliative care often struggles with the same issue that hospice has long faced: a tendency for physicians and other health professionals to view it as an end-of-life or even brink-of-death service. Evidence from the field highlights the need for educating referral sources to recognize the value of specialized attention to seriously ill patients’ and families’ needs for symptom management and psychosocial-spiritual support simultaneous with aggressive, disease-modifying therapies.
4. Reimbursement and regulation for palliative care remain big question marks. Currently, there is no reimbursement stream or regulatory structure explicitly addressing palliative care — with the exception of hospice — although palliative care can be covered through other reimbursement categories such as physician consultant visits or hospital diagnosis-related groups. But if reimbursement for palliative care were to be enacted, many innovative palliative care programs that now survive on grants, philanthropy, and institutional subsidies are poised to take advantage of it. Evidence is starting to emerge suggesting that palliative care programs can generate cost savings for hospitals by reducing lengths of stay and substituting supportive care for futile, aggressive treatments. But such evidence is still sketchy and hard to pin down.
5. The hospital remains a major site for the provision of end-of-life care, with half of all deaths occurring in the acute hospital setting. Community hospices often have little influence on what happens in the hospital, and results from the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments demonstrated that many patients dying in the hospital receive less-than-optimal care.
Together, those five implications point to an unmistakable conclusion: Hospices and hospitals need to find ways to work together to meet more of the palliative care needs of seriously ill patients who are dying in the hospital or who aren’t eligible for or enrolled in hospice care. Simply put, hospices need to go where patients are dying if they are to fulfill their larger mission of service to the community, while hospitals should be drawing upon hospices’ experience and skills in end-of-life care.
I visited 10 sites of hospital-hospice collaboration in the course of researching the NHPCO/ CAPC monograph on hospital-hospice partnerships. What I found at those sites of active partnering is the emergence of new, experimental, ad hoc programs incorporating inpatient hospice or palliative care units; inpatient and outpatient consulting services; liaison nursing, coordination, and case management; research and education initiatives; and a variety of other activities.
Hospice presence affects hospital culture
In some of those partnerships, the hospice is leading the innovation by introducing new concepts and new services to the hospital. In others, the hospital is driving the innovation while drawing upon a community hospice in an advisory or consultative capacity. In many cases, an expanded presence for interdisciplinary hospice and palliative care within the hospital is influencing medical culture and symptom management practices more broadly within the institution, often resulting from mere proximity and a higher profile for appropriate end-of-life care.
A major focus at many of the sites was the development of inpatient hospice units. These units provide the general inpatient care needed by the hospice’s caseload and also expand access to the hospice benefit for patients who are dying in the hospital. There are various avenues to collaborative inpatient development, depending on local circumstances, but often the hospice unit provides a beachhead for expanded collaboration on other fronts.
Well-placed champions within the hospital, mutual trust, and close personal relationships between individuals at each partnering organization were all important to successful collaboration. The partnerships also provided opportunities for physician leaders to play an expanded role in end-of-life care and for the exploration of specialized programming addressing the needs of special patient populations ranging from seriously ill children to patients with HIV/AIDS, congestive heart failure, chronic obstructive pulmonary disease, or Alzheimer’s disease. But the collaborations required financial support in the form of foundation grants, community donations, medical fellowships, and institutional subsidies, in addition to whatever reimbursement was available.
More research and more demonstration projects are needed to document the forms of collaboration between hospices and hospitals (as well as their value). At the sites I visited, hospice and hospital partners say they are responding to unmet needs in their communities and improving end-of-life care overall. They also say hospice’s expertise in symptom management and interdisciplinary care is slowly infiltrating into the medical culture of larger institutions without diminishing its direct role in providing end-of-life care.
The partners say introducing palliative care to patients and families earlier in the course of an illness, before a hospice referral would be considered appropriate, can have a secondary effect of more and earlier referrals to hospice care. This comes about not by pushing an explicit agenda of earlier hospice referral but by starting the conversation with patients and families about their values and goals for treatment and introducing them to palliative care concepts earlier in the course of their illness. The opportunity is expressed by a slogan used at one of the sites: "Hope for the best; plan for the worst."
Then, when a hospice referral becomes appropriate, it can be a more natural and seamless transition. Ultimately, they suggest, hospice will take its rightful place in the broader care continuum as the most intensive form of palliative care. One hospice medical director described it as "the jewel in the crown of palliative care," providing the gold standard for palliative care, a center of excellence, and a force for change in the hospital. If such an effect can be documented on a larger scale, the logic of hospices and hospitals developing closer partnerships in palliative care will become inescapable.
[Editor’s note: Larry Beresford, an independent journalist specializing in end-of-life care, is the primary author of Hospital-Hospice Partnerships in Palliative Care: Creating a Continuum of Services, published in December 2001 by the Center to Advance Palliative Care. Contact him at 1089 Park Ave., Alameda, CA 94501. Telephone: (510) 864-2446. E-mail: [email protected].]
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