Settings for End-of-Life Care: Palliative Care Programs

PALLIATIVE CARE

As concerns have grown about the poor quality of life patients ex-perience during progressive illness, broadening the concept of palliative care beyond the hospice has begun to take hold in health care settings across the country ( Jones, 1997). Palliativecare is an approach to care for the seriously ill that has long beena part of cancer care. Both palliative care and hospice have been recognized as important bridges between the compulsion for cure-oriented care and physician-assisted suicide (Saunders & Kastenbaum, 1997). Advocates for improved care for the dying have stated that acceptance, management, and understanding of death should become fully integrated concepts in main-stream health care (Callahan, 1993a; Morrison, Siu, Leipzig et al., 2000). Increasingly, palliative care is being offered to patients with noncancer chronic illnesses, where comprehensive symptom management and psychosocial and spiritual support can enhance the patient’s and family’s quality of life.

While hospice care is considered by many to be the “gold stan-dard” for palliative care, the term hospice is generally associated with palliative care that is delivered at home or in special facili-ties to patients who are approaching the end of life. Palliative care is conceptually broader than hospice care, defined as the active, total care of patients whose disease is not responsive to treatment (World Health Organization, 1990).

Palliative care emphasizes management of psychological, so-cial, and spiritual problems in addition to control of pain and other physical symptoms. As the definition suggests, palliative care is not care that begins when cure-focused treatment ends. The goal of palliative care is to improve the patient’s and family’s quality of life, and many aspects of this type of comprehensive, comfort-focused approach to care are applicable earlier in the process of life-threatening disease in conjunction with cure-focused treatment. However, definitions of palliative care, the services that are part of it, and the clinicians who provide it are evolving steadily.

Some would argue that palliative care is no different from comprehensive nursing, medical, social, and spiritual care and that patients should not have to be labeled as “dying” to receiveperson-focused care and symptom management. In addition to a focus on the multiple dimensions of the illness experience for both patients and their families, palliative care emphasizes the interdisciplinary collaboration that is necessary to bring about the desired outcomes for patients and their families. Interdisci-plinary collaboration is distinguished from multidisciplinary practice in that the former is based on communication and co-operation among the various disciplines; each member of the team contributes to a single care plan that addresses the needs of the patient and family.

Palliative Care at the End of Life

As discussed above, palliative care is broadly conceptualized as comprehensive, person- and family-centered care when disease is not responsive to treatment. The broadening of the concept of palliative care actually followed the development of hospice ser-vices in the United States. Hospice care is in fact palliative care. The difference is that hospice care is associated with the end of life, and although it focuses on quality of life, hospice care by ne-cessity usually includes realistic emotional, social, spiritual, and financial preparation for death. In the mid-1970s, when hospice care was introduced in the United States, it was more broadly conceived as care that addressed the whole person—physical, so-cial, emotional, and spiritual—and was available to patients ear-lier in the process of life-threatening illness. After hospice care was recognized as a distinct program of services under Medicare in the early 1980s, organizations providing hospice care were able to re-ceive Medicare reimbursement if they could demonstrate that the hospice program met the Medicare “conditions of participation,” or regulations, for hospice providers.

While Medicare reimbursement resulted in new rules for hospices, it also defined when Medicare beneficiaries are able to use their Medicare Hospice Benefit. In most programs, the Medicare definitions for patient eligibility are used to guide all enrollment decisions. According to Medicare, the patient who wishes to use his or her Medicare Hospice Benefit must be cer-tified by a physician as terminally ill, with a life expectancy of 6 months or less if the disease follows its natural course. Thus, hospice has come to be defined as care provided to terminally ill persons and their families in the last 6 months of the patient’s life. Because of additional Medicare rules concerning completion of all cure-focused medical treatment before the Medicare Hospice Benefit may be accessed, many patients delay enrollment in hos-pice programs until very close to the end of life.

The reasons for late referral to hospice and the underuse of hos-pice services are complex. They may include values and attitudes of health care providers, the inadequate dissemination of existing knowledge about pain and symptom management, health care providers’ difficulties in effectively communicating with termi-nally ill individuals, and insufficient attention to palliative care concepts in health care providers’ education and training.

Hospices care for approximately 29% of patients who are eli-gible (National Hospice and Palliative Care Organization, 2001). For the most part, the remainder of terminally ill patients die in hospitals and long-term care facilities. It is clear that better care for the dying is urgently needed in hospitals, long-term care fa-cilities, home care agencies, and outpatient settings. At the same time, many chronic diseases do not have a predictable “end stage” that fits hospice eligibility criteria, meaning that many patients die after a long, slow, and often painful decline, without the ben-efit of the coordinated palliative care that is unique to hospice programs. The palliative approach to care could benefit many more patients if it were available across settings for care and ear-lier in the disease process. In an attempt to make this valuable ap-proach to care more widely available, palliative care programs are being developed in other settings for patients who are either not eligible for hospice or are “not ready” to enroll in a formal hos-pice program. As yet, there is no dedicated reimbursement to providers for palliative care services when they are delivered out-side of the hospice setting, making the sustainability of such pro-grams challenging.

Palliative Care in the Hospital Setting

Since the advent of diagnosis-related groups (DRGs) as the basis for prospective payment for hospital services in the 1980s, there has been a financial incentive for hospitals to transfer patients with terminal illnesses who were no longer in need of acute-level care to other settings, such as long-term care facilities and home, to receive care (Field & Cassel, 1997). Despite the economic and human costs associated with death in the hospital setting, as many as 50% of all deaths occur in acute care settings (Hogan et al., 2000). The landmark Study to Understand Prognoses and Pref-erences for Outcomes and Risks of Treatments (SUPPORT, 1995) documented troubling deficiencies in the care of the dying in hospital settings:

•          Many patients received unwanted care at the end of life.

•          Clinicians were not aware of patient preferences for life-sustaining treatment, even when preferences were docu-mented in the clinical record.

•          Pain was often poorly controlled at the end of life.

•          Efforts to enhance communication were ineffective.

It is clear that many patients will continue to opt for hospital care or by default will find themselves in hospital settings at the end of life. Increasingly, hospitals are conducting system-wide assessments of end-of-life care practices and outcomes and are de-veloping innovative models for delivering high-quality, person-centered care to patients approaching the end of life. Hospitals cite considerable financial barriers to providing high-quality palliative care in an acute care setting (Cassel, Ludden & Moon, 2000). Public policy changes have been called for that would provide re-imbursement to hospitals for care delivered via designated hospital-wide palliative care beds, clustered palliative care units, or palliative care consultation services in acute care settings.

Palliative Care in Long-Term Care Facilities

The place of death for a growing number of Americans after the age of 65 is the long-term care facility (Alliance for Aging Re-search, 1997) As many as one third of all Medicare beneficiaries who die in any given year spend all or part of their last year of life in a long-term care facility (Hogan et al., 2000). The trend fa-voring care of dying patients in long-term care facilities will con-tinue as the population ages and as managed care payors pressure health care providers to minimize costs (Field & Cassel, 1997). Yet residents of long-term care facilities reportedly have poor ac-cess to high-quality palliative care. Regulations that govern how care in these facilities is organized and reimbursed tend to em-phasize restorative measures and fail to reward palliative care (Zerzan, Stearns & Hanson, 2000). Although home hospice pro-grams have been permitted since 1986 to enroll long-term care facility residents in hospice programs and provide interdiscipli-nary services to residents who qualify for hospice care, the Office of the Inspector General, an oversight arm of the federal government, has questioned whether such services are an unnecessary duplication of services already provided by facility staff (Office of the Inspector General, 1997). While there has been regulatory scrutiny on the one hand, long-term care facilities of all types are under increasing public pressure to improve care of the dying and are beginning to develop palliative care units or services, contract with home hospice programs to provide hospice care in the facil-ities, and educate staff, residents, and their families about pain and symptom management and end-of-life care.