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Hospice in Long-Term Care
INTRODUCTION
In the United States, approximately 1.8 million older Americans live in about 17,000 nursing homes (NHs).1 Care provided in NHs is based on a restorative and rehabilitative model of care. As the population ages, however, nursing homes are increasingly a common site of death. On average, one out of every four Americans dies in a nursing home.2 Approximately 20% of NH residents die each year in nursing homes or shortly after a transfer from a nursing home to an acute care setting.3 In recent years, interest in improving end-of-life care in the long-term care setting has emerged.4 Research supports that end-of-life care in NHs is less than optimal,5-7 due to inadequate pain management, increasing use of feeding tubes, and reimbursement disincentives. One way to improve the end-of-life experience for NH residents, their families, and health care professionals is to improve access to hospice programs.
Based on a review of national data from several sources, 76% of nursing homes in the continental United States collaborate with hospices on some level.8 Although hospices and nursing homes do collaborate in the provision of end-of-life care, multiple factors such as staffing issues, NH philosophy, and administrative and financial barriers can dramatically influence collaboration.
We review the benefits and challenges of delivering hospice care to nursing home residents and their family members. First, we provide a brief description of hospice services. Second, we explore the benefits of collaboration with hospice to NH residents and family members. Next, we describe the challenges of collaboration for NHs and hospices. Finally, we discuss strategies to enhance a mutually beneficial partnership between NH and hospice.
WHAT IS HOSPICE?
Hospice is a concept of care designed to provide comfort and support to patients and families during a serious illness that is no longer responsive to cure-oriented treatment.9 In most cases eligibility for hospice requires prognosis of six months or less (if underlying illness follows its usual course), as certified by two physicians.9 Hospice focuses on a noncurative path of care and is always provided by an interdisciplinary team of health care providers that includes physicians, nurses, social workers, health aides, clergy, bereavement staff, volunteers, and speech, physical, and occupational therapists, as needed. Table I lists the services provided by the team to patients and families.
In the United States, hospice care is a benefit available under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.10 Most people (80%) enrolled in hospice are over the age of 65, and are therefore eligible for the Hospice Medicare Benefit. Hospice can be provided in many settings, including long-term care facilities such as nursing homes.
HOSPICE ENROLLMENT FOR NURSING HOME RESIDENTS
Based on the percentage of residents who use hospice before death and on the duration of use, hospice services are generally underutilized by NH residents. In a five-state study based on 1996 Medicare beneficiary data, only one in four Medicare-eligible nursing home residents utilized hospice services before death.11 In addition, NH residents who did enroll in hospice often enrolled shortly before death. In 1996, 12,000 nursing home residents used the Medicare Hospice Benefit, of which 32% had hospice stays of 14 days or less and 20% had hospice stays of one week or less.12 This was shorter than the national median length of stay (MLOS) for all hospice patients for the same time period (MLOS in 1995: 29 days), suggesting that nursing home residents enrolled in hospice may have shorter lengths of stay than other patients.
When a nursing home resident is enrolled in hospice, the hospice is responsible for the management of many services related to end-of-life care, supplemental to that of the NH staff. Staff from the NH and the hospice share responsibility for specific aspects of care, and resident care plans must reflect this dual involvement. The care plan for the resident must therefore document and designate which services will be the responsibility of the hospice and the nursing home.13 Payment for services are shared as well. For example, when a NH resident enrolls in the Medicare Hospice Benefit, the payment for room and board continues to be the responsibility of the resident or family, or a secondary insurer such as Medicaid, if the resident is eligible.
DYING NURSING HOME RESIDENTS CAN BENEFIT FROM HOSPICE
Nursing home residents and their families can benefit from the additional services provided by hospice in several ways. Quality indicators such as pain and symptom management, reduction in hospitalizations, and family satisfaction with care at the end of life are positively affected by the use of hospice services with nursing home residents.
Symptom Management, Family Satisfaction, and Reduction of Hospitalizations
Pain management is a critical issue for nursing home residents, with 33-84% of residents experiencing pain that impairs the ability to ambulate, reduces quality of life, and increases the incidence of depression.14,15 Many dying nursing home residents with daily pain either are not receiving adequate pain management or are getting treatment that is inconsistent with pain management guidelines.5 Hospice staff have the needed expertise to comprehensively evaluate pain and other symptoms.
A retrospective record review of hospice patients between 1997 and 1999 revealed that hospice staff successfully identified additional palliative care needs, including symptom management of pain and dyspnea, as well as feeding tube management, among NH residents enrolled in hospice.16 Elsewhere in a retrospective, matched cohort study of dying NH residents, residents enrolled in hospice were more likely to receive appropriate analgesic management of pain than NH residents not enrolled in hospice.5
Family members of nursing home residents also perceive a benefit from hospice services. Baer and Hanson17 found that family members of NH residents who died under hospice care believed that hospice involvement improved the quality of symptom management for their relatives at the end of life. Family members’ ratings of quality as good or excellent increased from 64% before hospice involvement to 93% after hospice involvement (P < 0.001). Family members also believed that hospice enrollment reduced hospitalizations from the NH to the hospital.17 Hospice services delivered in nursing homes were associated with lower rates of hospitalization in the last 30 days of life for residents enrolled in hospice versus non-hospice residents.18
Although death is common in nursing homes, data suggest that nursing home staff may not have the expertise or organizational system in place to provide bereavement services. In a survey of nursing home decedents’ family members, none had information on local, community, or onsite bereavement support group meetings.19 Furthermore, only 3% of the nursing homes (3 out of 111) in this survey made any attempt to visit, call, or send a written communication (such as a bereavement newsletter) to family members of the decedents.
CURRENT CHALLENGES TO HOSPICE IN LONG-TERM CARE SETTINGS
Nursing homes face many challenges in the provision of high-quality end-of-life care. Competing philosophies among professional staff, difficulty identifying the terminal status of residents, staff shortages, high turnover rates, and insufficient reimbursement for the intensity of professional services at the end of life make in-house programs difficult to implement. Hospice could help meet this need.
Administrative Barriers
In a study of 23 nursing homes, administrators were asked about hospice usage.20 Hospice use ranged from 2-39%. Facilities in which nursing home administrators were “most sympathetic” to hospice were three times more likely to use hospice than nursing homes in which administrators were “least sympathetic.” Nursing home administrators may be hesitant to deviate from federal regulations that dictate an emphasis on rehabilitation and restoration of function as the goal of NH care.21 Therefore, many NH administrators are reluctant to seek collaboration with a hospice service. These perceived barriers to collaboration between nursing homes and hospices limit the willingness of NH administrators to pursue affiliations with hospice. A particular concern is potential survey citations when care plan approaches differ from established state and federal regulations. Because nursing homes and hospices operate under different regulations, specific contracts must be developed to make partnerships possible.22
Difficulties Recognizing Terminal Status
Recognition of the terminal status associated with advanced chronic illness is essential if clinicians are to discuss goals for care as death approaches. Unfortunately, clinicians are frequently inaccurate in their prediction about death.23 In contrast to the rapid declines preceding death from cancer, death from many other diseases typically found in nursing homes occurs with gradual declines in function.24 Recognizing terminal status may be particularly difficult with mental disorders (eg, dementia), circulatory system disorders (eg, heart disease), nervous system disorders, injuries, and respiratory tract disorders (eg, chronic obstructive pulmonary disease).25 The illness trajectory for NH residents with a noncancer diagnosis is less predictable than a cancer diagnosis.26 Thus, the terminal status of NH residents often goes unidentified until after a hospitalization or other major change in health status.7
Financial Disincentives
Financial disincentives exist with federal and state reimbursements, and problems often surface when the nursing home and hospice attempt to merge differing philosophies and administrative structures. Insufficient reimbursement from Medicare and Medicaid contribute to this challenge. For example, if a NH resident is certified under Medicare for skilled care after a hospitalization, and the resident enrolls in hospice before the end of skilled care coverage, the nursing home no longer receives the higher restorative and rehabilitative payment rate. Thus, the reimbursement structure favors aggressive treatment versus palliative care.7,11,21,27 This issue alone may explain why nursing home administrators avoid collaboration with hospice or delay referral until residents are no longer eligible for reimbursement under Medicare skilled nursing care.11
Fraud Allegations
The U.S. Department of Health and Human Services Office of Inspector General (OIG) conducted an audit in 1997 of the use of the Medicare Hospice Benefit in nursing homes from five states (California, Florida, Illinois, New York, and Texas).28 Among hospice patients living in NHs, 16% did not qualify for the Medicare hospice benefit at the time of enrollment because they were not deemed as terminal. Ineligible residents had longer lengths of stay (average, 369 days) than eligible nursing home residents (average, 145 days). Although OIG estimates now appear flawed,12 such scrutiny has probably intensified fears of nursing home administrators to collaborate with hospice. A follow-up study was proposed in the OIG 2003 work plan; however, to date the results have not been published.29 Administrative and contractual barriers, as well as suspicions of fraudulent use, clearly limit access to hospice care in nursing homes.
MAKING COLLABORATION WORK
Despite potential barriers, there are many successful nursing home–hospice collaborations for end-of-life care.30 Nursing homes and hospices have mutual goals to provide comfort, compassion, and quality care to dying residents and their families. Compatibility, clear lines of communication, and trusting relationships are crucial for nursing home–hospice collaboration. Development of organizational relationships takes time, commitment, and perseverance. Hospice and nursing home staff, as well as residents and their families, however, can benefit from such collaboration aimed at high-quality end-of-life care, as illustrated in Table II.
Nursing homes and hospice programs vary greatly in terms of size, structure, and culture. The driving philosophy behind NHs (restorative and rehabilitative) differs from hospice programs (palliative). Staff from the NH and hospice each bring their unique expertise to the table. Successful collaborations recognize the differences and commonalities between and among care providers, allowing both to improve knowledge, understanding, and respect for one another.30
A formal relationship between a NH and hospice must meet the regulatory requirements of both entities. Policies and procedures are required to coordinate billing and staffing, as well as to clarify provider roles. The goal of collaboration is to assure optimal end-of-life care for dying NH residents, not to add a layer of burden to the NH staff by bringing in another organization. Thus, excellent communication and coordination of care is crucial between the NH and hospice staff.22
SUMMARY
As the population ages, NHs are increasingly the site for terminal care. It is therefore reasonable to anticipate a growing demand for expertise in end-of-life care in this setting. Hospice care in NHs can lead to more effective and consistent pain management and symptom control from highly trained teams of palliative care specialists. Nevertheless, significant challenges must be addressed to ensure successful partnerships between hospices and NHs. The lessons learned in establishing these collaborative relationships will be important in guiding end-of-life care in other long-term care settings, such as assisted living facilities (800,000 residents in U.S.) and continuing care retirement centers (600,000 residents in U.S.). Regardless of the setting, hospice can significantly improve the dying experience for institutionalized terminally ill individuals and their families.
