Innovations in End-of-Life Care Editorial Innovations in End-of-Life Care an international journal and online forum of leaders in end-of-life care Editorial When Pain and Suffering Do Not Require a Prognosis: Working Toward Meaningful Hospital-Hospice Partnership Diane E. Meier, MD [Citation: Meier DE. When pain and suffering do not require a prognosis: Working toward meaningful hospital-hospice partnership. Innovations in End-of-Life Care. 2002;4(1), www.edc.org/lastacts] Introduction I am asked on a daily basis, "What is palliative care?" This should be a fairly simple and straightforward question to answer. It is what I do for a living. I am seldom confused about it when I am taking care of patients and families on our hospital's palliative care service. The answer seems clear in day-to-day clinical practice: palliative care is interdisciplinary care that aims to relieve suffering and improve quality of life for patients and their families. But this response begs another question—"Isn't that what hospice is all about?" In fact, hospital-based palliative care and hospice share many goals: relieving suffering, promoting patient function, clarifying goals of care and associated treatment alternatives, meeting daily living needs, providing practical psychosocial supports for patients and family caregivers, and achieving the best possible quality of life as determined by patient and family. The distinctions between hospital-based palliative care and hospice arise in where and when care is delivered to meet these goals. There are serious gaps in our health system's delivery of palliative care.1 The Medicare Hospice Benefit provides for hospice care but it requires patients to give up curative care and is limited to those with a prognosis of six months or less. In small hospice programs, the Benefit's financial risk arrangement effectively eliminates the use of effective but expensive palliative care therapies, such as radiation, chemotherapy, transfusions, and bisphosphonate infusions. Many seriously ill patients are not referred to hospice because they do not meet the stringent prognostic criteria or do not wish to forgo curative care. In response, many hospice programs have raised funds and adapted their structures and services to serve patients beyond the eligibility of the Medicare Hospice Benefit. But there are other issues. Patients whose home environment or families cannot take on the physical, emotional, practical, and financial burden of caring for a dying one at home may not have access to hospice care. Palliative care in the hospital setting has great potential, but most hospitals do not yet have palliative care programs. Despite growth in fellowship programs and recent education requirements for undergraduate and postgraduate palliative care training, the workforce needed to staff palliative programs in all hospitals, not to mention nursing homes, does not yet exist. This situation brings me to a third, and most important, question that I will address in the balance of this article: How can we ensure our sickest and most vulnerable patients get the palliative care they need? One answer to this question is hospice-hospital collaboration. Programs such as that shared by the Rush North Shore Medical Center Hospital in Skokie and the Palliative CareCenter & Hospice of the North Shore in the Chicago suburbs are creating a continuum of care for their patients. This program is highlighted in this issue of Innovations. As discussed both in the Featured Innovation and here, hospices and hospitals can—and are—bridging gaps in our system to ensure patients and their families receive the care they need from the point of diagnosis with a serious illness onward. Background: Palliative Care and the Hospice Setting It is helpful to set the stage for this discussion with a brief look back at the origins of the hospice movement. Understanding how palliative care in the hospice setting is structured and reimbursed provides insights into why collaboration is both needed and useful. The hospice movement began in the early 1970s in reaction to the generally held perception of death as a medical failure, and the isolation and abandonment of patients for whom "nothing more could be done." Congress passed the Medicare Hospice Benefit in 1982 and since then, hospice has experienced exponential growth. More than 700,000 dying patients and their families received hospice care in 20002 Hospice providers emphasize expert pain management and symptom control, closure, spiritual wholeness, support for family caregivers, and the naturalness of death within the cycle of life. This focus on the quality of the dying process for patient and family, as well as the effort to come to terms with death on an existential and spiritual level, are incorporated in the provisions of the Medicare Hospice Benefit. To be eligible for palliative care under the this federally defined insurance benefit, a patient must consent to treatment focused on comfort, not cure, and have physician attestation of a limited prognosis (usually six months or less if the disease follows its expected course). It is important to note that hospice as a concept is broader and more inclusive than the Medicare Hospice Benefit and that many hospice programs provide patients with care beyond the six-month eligibility. However, Medicare remains the principal payer for hospice services. The federal and state regulatory and reimbursement requirements that patients forego curative treatments and be certified as terminally ill result in real and perceived restrictions in access to and eligibility for this form of palliative care services. For nearly 30 years, the hospice model has proven to work well for, and is now employed by, as many as half of the patients in the US who have died with a diagnosis of cancer.2 The frequent election of the hospice benefit by cancer patients occurs because the downward trajectory toward death is relatively predictable in the last stages of this disease. Increasing numbers of Americans do meet hospice eligibility criteria and do make use of their hospice benefit. But many more, the majority of those who die in the United States, do not. Frail elderly patients with end-stage heart disease or advanced dementias often are unaware of hospice as a choice and may not wish or be able to select this option. Palliative Care in the Hospital Setting These factors, as well as the fact that hospitals are the primary training site for the nation's future doctors and nurses, stimulated the growth of the current palliative care movement. Palliative care in the hospital setting adapts the philosophy and interdisciplinary practice of the hospice movement and applies it to patients with serious and complex illness, independent of their prognosis and whether or not they choose to continue curative or life-prolonging treatments. Thus, while palliative care is appropriate for those who are clearly dying, it is equally relevant to a much larger group of persons with a range of serious illnesses and an indeterminate amount of time left to live. Hospital-based palliative care began with fewer than 20 physicians and nurses working primarily in academic medical centers as an interest group initially supported by the Open Society Institute's Project on Death in America in the mid-1990s. As of 1999, more than 25 percent of academic medical centers3 and well over 400 hospitals have a palliative care program.4 In the last seven years, more than 700 physicians have passed the American Board of Hospice and Palliative Medicine (ABHPM) board exam. Over the last three years, more than 1,000 physicians have attended three-day long medical training conferences sponsored by Education for Physicians in End-of-Life Care. Approximately 20 postgraduate fellowship training programs have been formed across the country, and more are in planning stages.5 More than a 1,000 health professionals representing more than 400 hospitals and hospices attended how-to conferences sponsored by the Center to Advance Palliative Care aimed at helping health professionals and managers to start and sustain hospital-based palliative care programs in the last year. Why Palliative Care? The hospice community has been instrumental in the growth of hospital-based palliative care, as it has looked for additional ways to serve patients and their families. Many hospital programs have been supported or initiated by hospice professionals. At the same time, some in the hospice industry have wondered aloud why hospital-based palliative care should be necessary. Why aren't all these patients referred to hospice? In response to these concerns, it is important to point out that more than 75 percent of the nation's predictable deaths occur in hospitals and nursing homes, with death rates in hospital ranging from as low as 22 percent in some small communities in Oregon (where hospice utilization is correspondingly higher) to as high as 52 percent in some urban areas on the East Coast (www.dartmouthatlas.org ). In addition, virtually all persons with a serious illness spend at least some time in a hospital, usually on multiple occasions, in their last year of life. Extensive data from a number of studies demonstrate high degrees of symptom distress in hospitalized patients;6,7 high use of burdensome life-prolonging technologies among the terminally ill;6 enormous caregiver burden on families;8,9 and poor-to-nonexistent communication about the goals of care between these patients, their families and their treating physicians.6,10 These negative findings occur despite the fact that both patients and their families say that what they want from the health care system is precisely the opposite: they want to be free of physical distress; to have some control over decisions about their health care; to avoid death-prolonging treatments; and to improve relationships with and reduce burden on their families.11,12 Not surprisingly, care of the growing numbers of elderly, seriously ill, and complex patients in hospitals is expensive, and contributes in no small way to the widespread financial strains on the nation's hospital system. Finally, the nation's future physicians will all receive their apprenticeship in a hospital. If we are to prepare our doctors to treat physical suffering, to know how to work with the medical system on behalf of patients and families, and to see care of the dying as well as the chronically and seriously ill as a core clinical responsibility, that teaching must occur at least in part in the hospital setting. From the medical student or houseofficer standpoint, if palliative care is not taught during clinical rotations in the hospital, then it is by definition not an important competency for a doctor to own. The evidence base for the impact of palliative care clearly demonstrates its benefits in terms of reduction in symptom distress,13-15 improved patient and family satisfaction,15,16 and reduction in hospital length of stay, costs, and utilization.15,17-23 One review of 16 hospital-based palliative care programs in four different nations found positive effects on symptom control, improved satisfaction, and reduced costs, despite a wide variety of care models, assessment instruments, and practice patterns among the institutions studied.24 Thus, the published data support the utility of palliative care in hospitals in terms of quality of clinical care, support for families, and reduction in hospital costs. Hospice-Hospital Collaborations In the effort to extend palliative care to a much larger group of patients and families, the hospice-hospital partnership strategy has a number of advantages. Although very few hospitals have palliative care expertise, almost every community in our nation has one or more hospice programs. Partnering with hospice gives hospitals access to an untapped repository of palliative care expertise as well as access to integrated continuity of care for our sickest and most vulnerable patients and their families. As reported in the recently published joint NHPCO/CAPC monograph, Hospital-Hospice Partnerships in Palliative Care,25 a number of the nation's hospice programs have already forged strong, mutually beneficial partnerships with hospitals in their communities—partnerships that go beyond the contract for the in-patient beds required by the Medicare Hospice Benefit. (Hospices must have access to in-patient services under law, and many meet this requirement by contracting with hospitals for access to a few beds). The nine programs described in the monograph represent a range of communities, types of hospice programs, and forms of partnership with hospitals. Despite these differences, each of the nine programs highlighted represents a successful model of collaboration that has increased the access of hospitalized patients to palliative care, both within and in addition to Medicare-funded hospice services. Collaboration between hospices and hospitals benefits patients. Both hospices and hospitals work on an established organizational and fiscal infrastructure, utilizing specific payment and reimbursement mechanisms. Both are dedicated to quality medical care and service to their communities. And both have a depth and breadth of specific professional expertise that, in combination, can meet a wide range of patient and family needs. In addition, hospitals provide acute care expertise and secondary and tertiary care specialty services, as well as expertise in marketing, development, finance, and business planning. Hospices bring interdisciplinary palliative care expertise, an ability to case-manage the care of very complex and seriously ill patients across multiple care settings, spiritual care services, volunteer supports for both patient and family caregivers, and bereavement programming and support for family members for at least one year after the patient has died. Together, these institutions can meet most, if not all, of the needs of the seriously ill for a range of illnesses, disease stages, and clinical settings. Collaboration benefits hospices and hospitals as well, from both a patient care and a business perspective. From the hospice perspective, since many terminally ill patients are cared for in hospitals, a hospital partnership allows hospices to reach and care for a much larger group of patients and families, earlier in the course of their illness. Mount Sinai Hospital's palliative care consultation service increased hospice referrals by 300 percent in the first year of its existence. Other programs have reported similar trends. While increased numbers of referrals earlier in the disease course has obvious potential fiscal benefits for hospice, most importantly, it increases access to palliative care services for patients in greatest need of these specialized services. The link between hospitals and community hospices can also help to overcome one of the main barriers to hospice referral—the implication of abandonment by the hospital's primary medical team and the resultant patient and family feeling of a forced transfer out of the hospital that inhibits many referrals. If hospice professionals and hospital staff work together and see themselves and are seen by patients as part of a team, the discontinuities inherent in the experience of the transfer are minimized. Collaboration also improves hospice access to a much broader segment of the patient and provider community: cardiologists, intensivists, transplant teams, nephrologists, and their patients—groups of patients and providers who seldom access hospice care, at least in part due to unfamiliarity with hospice and its benefits. From the hospital perspective, hospice collaboration creates instant capacity to meet the clinical palliative care needs of the sickest and most complex patients in the hospital. Linkage with hospice professionals can provide clinical expertise not only to patients in the hospital, but also to their families, both during and after the hospital stay. Hospices can create the bridge between the hospital and home that is so often lacking in the acute care setting and that leads to long hospital stays and frequent readmissions. The hospice partnership markedly enhances discharge options for seriously ill persons with high professional care needs upon return to the home. Hospice professionals are familiar with and feel secure about caring for the predictable crises that are a routine part of care at home for persons with serious and complex illness. Hospices are structured to respond to patient and caregiver needs 24 hours a day, 7 days per week, and can respond quickly and effectively to the symptom distress episodes that would otherwise precipitate trips to the emergency department. Hospitals will also benefit from the very high patient and family satisfaction associated with hospice care, particularly if such care is viewed as part of the range of services received as a result of the hospital stay. Not only is the satisfaction of patients and families improved, but hospital staff nurses are also more satisfied with their work, and more likely to stay on the job, if they feel that the care they are delivering to their sickest patients is responsive and compassionate. While no definitive study has yet proven this clinical observation, a number of palliative care program leaders and hospice professionals believe that nursing retention is enhanced by participation in the delivery of high quality palliative care, and is reduced by its absence. Similarly, for teaching hospitals providing undergraduate and postgraduate medical education, the Liaison Committee on Medical Edcucation (LCME) and the Accreditation Council for Graduate Medical Education (ACGME) requirements for palliative care education can be met by a teaching contract with one or more hospice partners. Finally, the financial incentives for hospitals favor hospice partnerships. Under capitation arrangements, hospices help prevent frequent and costly hospital readmissions for the sickest 5 percent who utilize more than 30 percent of the health care dollar. Under case rate and per diem models, hospice partnerships and their associated discharge options can help reduce length of stay for some of the longest stay, sickest, and most costly patients in the hospital, thus increasing bed capacity for new admissions. Even if a hospitalized patient cannot be discharged to another care setting, hospice involvement can lead to marked reductions in cost per day, largely because of the impact on pharmacy costs, number of diagnostic procedures, and use of intensive care. For those hospitals that participate in contracts for inpatient hospice beds, some long-stay but hospice-eligible patients can choose to be "paper-transferred" to hospice care, while remaining in the hospital setting. In such circumstances, the hospital recovers approximately $500 per day in per diem income from the hospice, as opposed to zero dollars from the typical long stay Medicare patient whose DRG payment has long been exhausted. Most important of all, however, is the care received by the object of our health care system: the patient and the family. Hospice-hospital collaboration should lead to care that is responsive to what patients say they want from the health care system (relief of suffering; avoidance of burden on and closer relationships with loved ones, sense of control; avoidance of death prolonging treatment);11 an increased range of care options; increased insurance coverage for the needs of seriously ill persons at home (professional interdisciplinary team care, personal care, prescription medications, equipment, bereavement support); and greater continuity between care settings. Thus, from the standpoint of all the principals—the patient and family, the hospice, and the hospital—partnership is a win-win-win situation. There are no substantive arguments against this collaboration and overwhelmingly strong arguments in its favor. So why hasn't this approach grown more rapidly? Breaking Down Barriers to Quality Patient Care Hospice-hospital palliative care partnerships are shattering some longstanding stereotypes that have inhibited their growth. A major barrier is generalization that hospitals have a strictly curative bias, while hospices are solely concerned about good deaths. Successful collaborations show otherwise through their continuum of patient care. They also help lead the way to surmounting some of the real cultural differences between hospice and hospital (Table I). These areas of difference, though represented here as generalizations, have a real influence on practice, and on the care that patients in need of palliative care do or do not receive. The reimbursement systems and the incentives that grow from them are also highly divergent and reflect the rigid cure-care dichotomy that has come to characterize the two settings. The fact that most patients with serious illnesses need both care focused on reasonable efforts to prolong life as well as meticulous and sophisticated palliative care is nowhere reflected in our current reimbursement or care delivery structures. Successful hospice-hospital collaborations overcome these differences by defining and articulating their common goals and vision on behalf of their patients and their families and communities. They consciously recognize and respect their very real differences in history and culture and build on their mutual strengths rather than employing rhetoric about differences and failings. They approach their partnerships with a commitment to success rather than an anticipation of failure. These critical success factors are, as in any creative venture, largely dependent upon individual leaders, effective professional teamwork, and relationships. An example is that of the former Hospice of the North Shore. In 1995, the nonprofit Hospice of the North Shore changed its name to the Palliative CareCenter of the North Shore and more recently, to the Palliative CareCenter & Hospice of the North Shore (PCCHNS). The changes were meant to reflect the center's efforts to create a continuum of palliative care services from the point of diagnosis for patients and families facing serious or life-threatening illness. This continuum includes hospice care, home health care, private-duty caregivers, case management and palliative care consultation both at home and in the hospital. As stated in the joint NHPCO/CAPC monograph, Hospital-Hospice Partnerships in Palliative Care, "a cornerstone of its continuum is a hospice inpatient unit operated by the agency in leased space on the campus of Rush North Shore Medical Center in neighboring Skokie. Collaboration between independent, community-based Palliative CareCenter and the hospital, part of the Rush System for Health, centers on the successful inpatient unit, but holds the potential for a variety of future partnerships."25 Keys to success have included shared vision between leaders of the programs, mutual respect, PCCHNS's independence and reputation in the community, the hospice unit's location (which allows it to have its own identity while drawing on the hospital's resources), PCCHNS's advocacy with regulators and fiscal intermediaries, and the Illinois Department of Health's commitment to the success of the partnership. Extending the Model Programs such as these suggest several steps for hospices and hospitals interested in building a continuum of care. Hospital managers or clinician leaders could meet with one or more local hospice CEOs to discuss mutual approaches to case finding, discharge planning, staff education, and contractual alternatives. Hospice leaders could cultivate links with hospital clinicians, particularly through the connections and referrals of those hospital physicians who do make hospice referrals and value the services provided to their patients. Hospices could also collect and present data to their hospital colleagues on hospital and hospice length of stay, cost avoidance, discharge options, and quality of care. Both parties could give serious consideration to the shared support of a liaison nurse, an inpatient consultation service, or an inpatient hospice-palliative care unit. All of these approaches have worked well in groundbreaking individual settings. There is every reason to believe that they will work well across the nation. Effective hospice-hospital collaboration creates the foundation on which improvements in patient care and financial performance will be predicated. Realizing the potential of these partnerships is an opportunity we owe those whom we serve. Acknowledgements The author thanks her colleagues True Ryndes, ANP, MPH, Amber Jones, MEd, and Dorothy Moga, MPH, for their contributions to this work. References 1. Meier DE, Morrison RS, Cassel CK. Improving palliative care. Annals of Internal Medicine. 1997; 127:225-230. 2. "Facts and Figures on Hospice in America" found at www.nhpco.org/ on the Stats/Research/Resources page. 3. Billings J, Pantilat S. Survey of palliative care programs in United States teaching hospitals. Journal of Palliative Medicine. 2001; 3:391-396. 4. Pan CX, Morrison RS, Meier DE, et al. How prevalent are hospital-based palliative care programs? Status report and future directions. 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A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine. 1998;26(2);252-259. 22. Lilly CM, DeMeo DL, Sonna LA, Haley KJ, Massaro AF, Wallace RF, Cody S. An intensive communication intervention for the critically ill. American Journal of Medicine. 2000; 109:469-475. 23. Meier DE, Morris J, Morrison RS. The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine. In Pioneer Programs in Palliative Care: Nine Case Studies, DM Fox, RG Gibson, (eds.). New York: Milbank Memorial Fund, 2000. 24.Franke AL. Evaluative research on palliative support teams: A literature review. Patient Education and Counseling. 2000; 41:83-91. 25. Hospital-Hospice Partnerships in Palliative Care: Creating a Continuum of Service. A joint project of the National Hospice and Palliative Care Organization and the Center to Advance Palliative Care. New York: Center to Advance Palliative Care, 2001. 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