12 AMY M. WESTCOTT SUSAN LYSAGHT HURLEY KAREN B. HIRSCHMAN In our aging society, increasing numbers of adults with advanced illness receive long-term care services and support in a variety of settings (Medicare, 2009). Long-term care services and support can be provided at home or in the community (i.e., in senior centers, in Programs of All-Inclusive Care for the Elderly [PACE]), in assisted living facilities, in personal care homes, or in nursing homes. Thus, older adults who wish to age in place or die in place may take advantage of various models of care from diagnosis of an advanced illness through death, and health care providers need to rise to the challenge of providing the best possible care. In this chapter, we consider ways in which this care is provided by hospice, palliative care, and the integration of good end-of-life care into existing long-term care services and supports. After completing this chapter, you should have an understanding of: • The history and development of hospice and palliative care • The various settings that deliver hospice and palliative care • The benefits and challenges of delivering hospice and palliative care The concept of a formal program for hospice care originated with Cicely Saunders, a British physician with prior experience as a nurse and social worker. Dr. Saunders is often credited with being the pioneer of the modern hospice movement. She founded St. Christopher’s hospice in England 1967 (Clark & Foley, 2003; St. Christopher’s Hospice, 1967; Storey, 1990). Formal hospice care actually preceded formal palliative care in the United States. In 1982, the Medicare Hospice Benefit (MHB) was created to provide comprehensive care to patients who have a terminal illness and wish to die at home. Hospice is defined as a program that focuses on caring, not curing and is “considered the model for quality compassionate care for people facing a life-limiting illness … hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes” (National Hospice and Palliative Care Organization, 2012, p. 3). A terminal illness was defined as one in which someone would have a life expectancy of 6 months or less, should a disease run its natural course. The MHB requires that the patient forego curative treatment and opt for more aggressive palliative symptom management (Centers for Medicare & Medicaid Services, 2010). Hospice delivers care using an interdisciplinary team generally consisting of a nurse, social worker, chaplain, bereavement specialist physician, volunteers, home health aides, and therapists who work in partnership with the patient and family and with existing long-term care services. Each team member brings a discipline-specific expertise as well as superior communication skills to develop and implement an individualized plan of care to meet the needs of the patient and/or family. Collaborative care among all team members is key to success (Figure 12.1). Of the 2.5 million Americans who died in 2009, 42% or just over 1 million died under hospice care (National Hospice and Palliative Care Organization, 2012). Hospice patients tend to be older (aged 65 or older), female, and White (Connor, Elwert, Spence, & Christakis, 2007, 2008). The older population using hospice services tends to have a noncancer primary diagnosis (62% in 2011), such as debility, dementia, heart disease, lung disease, and end-stage organ failure (National Hospice and Palliative Care Organization, 2012). Approximately 42% of patients enrolled in hospice receive care at a private residence, but a growing number of hospice patients are receiving care in nursing homes (18%) and in residential care communities (7%; National Hospice and Palliative Care Organization, 2012). Hospice care in the United States is largely provided through the Medicare Hospice Benefit (MHB). FIGURE 12.1 Components of collaborative care. The MHB is funded through the U.S. government Medicare program (Part A). In general, Part A covers care provided by a hospital, skilled nursing facility (SNF), nursing home, hospice, and home health services (Centers for Medicare & Medicaid Services, 2010, 2012a, 2012b), whereas Part B primarily covers preventive and outpatient services. Originally, hospice was created for care of someone with a life-limiting illness, such as cancer, in the home with a primary caregiver providing a majority of the care. In 1986, Congress extended the MHB to cover those with life-limiting illnesses residing in nursing homes, and state Medicaid programs were given the option to include the hospice benefit as well, which allowed greater access to the MHB (Medicare, 2009; National Hospice and Palliative Care Organization, 2012). One important consideration for many nursing home residents who may be receiving the Medicare skilled nursing benefit, which covers room and board, is that when the MHB is selected, everything related to the terminal diagnosis is covered except room and board, which is often covered out-of-pocket or by Medicaid. Care provided by either the primary caregiver in the home or staff in a nursing home or assisted living facility is supplemented by a hospice interdisciplinary team 24 hours a day and 7 days a week with visits, medical equipment, medications related to the hospice diagnosis, an on-call telephone hotline service, and bereavement support to loved ones for 13 months after the death. As of 2012, the MHB is a capitated reimbursement structure, with a per diem rate (depending on the site of care and geographic region) for routine home care (approximately $140), continuous home care (approximately $830), inpatient respite care (approximately $150), and general inpatient care (approximately $640). This means that the hospice organization received a set payment to provide all of the hospice services (Centers for Medicare & Medicaid Services, 2012b). FIGURE 12.2 Interface of hospice and palliative care. In addition to the MHB, hospice may be paid for in other ways. For instance, most private insurance plans currently offer a hospice benefit. Some private insurance companies are exploring open-access hospice programs that will provide ongoing treatment in conjunction with hospice management or programs that extend the prognosis to more than 6 months (i.e., 1 year). Also, many hospices will provide charity care for those who don’t have insurance or cannot afford parts of their care. Although hospice is the most commonly utilized model to provide palliative care, in Figure 12.2, we depict that it only reaches a small portion of the ill, specifically those who have a prognosis of 6 months or less. The hope is for palliative care to be integrated much earlier. Palliative care is an approach to care as well as a formal specialty in many health-related disciplines. Although the palliation of symptoms can occur during the course of any illness (i.e., when we are treating an infection but give acetaminophen to relieve the discomfort of fever), formal palliative care usually refers to supportive care of those with life-limiting illness. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organization, 2010). For older adults with progressive and advanced illness, goals of care may change from curative treatment to a palliative approach. Palliative care focuses on the goals of care, a patient’s wishes, and aggressive symptom management. Although the notion of palliative care is much older, in the United States the first medical palliative care program was established at the Cleveland Clinic by Declan Walsh in 1987 (Meier, Isaacs, & Hughes, 2010). The Institute of Medicine took notice in 1997 with a report titled Approaching Death: Improving Care at the End of Life (Board on Health Care Services, 1997). This report was followed by the establishment of the National Consensus Project for Quality Palliative Care in 2001, which led to the 2004 consensus guidelines and the most recent 2013 third edition of Clinical Practice Guidelines for Quality Palliative Care (National Consensus Project for Quality Care, 2013). Today, palliative medicine is a board-certified field for physicians in the United States. Nurse practitioners, nurses, and social workers can also achieve additional certification for providing palliative care (Center to Advance Palliative Care, 2011). Now, hospital-based palliative care programs can also be credentialed (The Joint Commission, 2011). Other models exist for providing palliative care for patients living in the community or in nursing homes. For the purpose of this chapter, community will be defined broadly as the patient’s home. However, we acknowledge that the community at large often plays a role in providing palliative care, especially in rural areas and within certain subgroups in the United States. Home-based palliative care models are usually provided through a home care agency to those with a skilled nursing need. In addition, some of the PACE (Program of All-Inclusive Care for the Elderly) models may incorporate a palliative care approach into their model through staff education or a designated team. Currently, the most utilized model for palliative care is delivered through hospice models either through the MHB, which is paid for by Medicare and sometimes Medicaid, or via private insurances, volunteers, private pay, or charity care. In this chapter, institutional settings include nursing homes, residential, assisted living, and personal care homes. The hospice model allows institutional communities to contract and collaborate with a hospice provider to care for eligible residents with life-limiting conditions. Hospice is often considered the gold standard for delivering comprehensive end-of-life care. End-of-life care is defined primarily by the regulatory environment rather than by scientific data due to the lack of reliable prognostic scientific evidence. Components of the definition of end-of-life care include (a) presence of a chronic disease(s) or symptoms or functional impairments and (b) irreversible/progressive disease causing symptoms or impairments that may lead to death (National Institutes of Health, 2004). More recently, the National Consensus Project and the National Quality Forum outlined eight domains for palliative care: (a) structure and processes of care; (b) physical aspects of care; (c) psychosocial and psychiatric aspects of care; (d) social aspects of care; (e) spiritual, religious, and existential aspects of care; (f) cultural aspects of care; (g) care of the patient at end of life; and (h) ethical and legal aspects of care (National Consensus Project for Quality Care, 2013). The hospice model sets a high standard for palliative care by fusing the strengths of the interdisciplinary team (i.e., nursing home, assisted living, or community-based long-term care services) with those of the hospice interdisciplinary team to care for the older adult and family. Both teams have mutual goals to provide quality care, symptom management, and dignity to dying residents and their families (Hirschman et al., 2005). For example, the nursing home team or assisted living staff bring prior knowledge about the resident/family, ongoing relationships, and personal care needs. The hospice team brings expertise in pain and symptom management, spiritual care, and bereavement support. Ideally, the collaboration between hospice and long-term support and services provides complementary care through effective leadership and communication (Miller, 2007; Zerzan, Stearns, & Hanson, 2000); however, some barriers do exist (Exhibit 12.1). These barriers include cultural, financial, regulatory, and organizational challenges for hospice to provide care in the long-term care residences and to the families of residents. EXHIBIT 12.1 Barriers to Hospice Care in Nursing Homes Type of Barrier Examples Cultural • Ethnic differences • Focus on rehabilitation and restoration of function Financial • Declining reimbursements from Medicaid • Room and board not paid for by hospice for routine level of care Regulatory • Federal regulations focus on maintaining weight, preventing falls, and preventing skin breakdown Organizational • Transitions between acute care and nursing home • Inadequate staffing • Training and education gaps • Commitment from leadership
Hospice and Providing Palliative Care
CHAPTER OVERVIEW
LEARNING OBJECTIVES
INTRODUCTION
MEDICARE HOSPICE BENEFIT
PALLIATIVE CARE
INSTITUTION-BASED MODELS
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