Palliative Care Models   37  

Constance Dahlin

OVERVIEW

The U.S. federal government defines palliative care as

There are specific characteristics that underpin palliative care: (a) care provision and care coordination are interdisciplinary; (b) the circle of care includes patients, families, palliative and non-palliative health providers who collaborate and communicate about care needs; (c) services are available concurrently either with or independent of curative or life-prolonging therapies; (d) patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process, and after death (National Consensus Project for Quality Palliative Care, 2013).

Palliative care is especially synergistic with nursing (Lynch, Dahlin, Hultman, & Coakley, 2011). The aims of nursing actions are to protect, promote, and optimize health; prevent illness and injury; and alleviate suffering (American Nurses Association, 2010). Nurses have been in the forefront of efforts to improve quality of life for patients and families throughout the experience of illness (Benoliel, 2010). Indeed, the establishment of palliative care in the United States occurred during the late 1970s. Dr. Florence Wald, the dean of Yale School of Nursing, visited Dame Cicely Saunders, founder of the modern hospice movement in England (Dahlin & Mazenec, 2011; Yale Bulletin and Calendar, 2001). Dr. Wald stated that, “hospice care was the epitome of good nursing care, as it enables the patient to get through the end of life on their own terms. It is a holistic approach, looking at the patient as an individual, a human being. The spiritual role nurses play in the end of life process is essential to both patients and families” (Yale Bulletin and Calendar, 2001). On return to Yale University, Dr. Wald developed a comprehensive nursing curriculum of the essential nursing skills necessary in the care of dying patients, including communication, as well as pain and symptom management (Adams, 2010).

This stimulated national interest in hospice care. The comprehensive care model, inclusive of physical, psychological, spiritual, and emotional aspects of care in the context of culturally appropriate care, involved a cultural shift to the more technological type of health care in which death and dying were ignored. Reaction to this resulted in the creation of a Centers for Medicare & Medicaid Services (CMS) demonstration project of eight hospice sites across the country. In 1982, the Medicare Hospice Benefit was enacted as part of health care, offering benefits to patients with a terminal illness. At the time, the payment structure was progressive as its fee structure was a capitated rate of a specific rate per day. It became the gold standard by which to measure care of patients with life-limiting illnesses.

To promote consistency and quality, the hospice conditions of participation (CoPs) were created, which specified required services, and characteristics for hospice development and care delivery (CMS, 2008). Eligibility for hospice is determined by meeting three criteria: a life-limiting diagnosis, a prognosis of 6 months or less, and the desire to forgo curative treatment. Four categories of hospice care are available: home care, continuous care, inpatient care, and respite care. Patients and families receive a range of services: medications, equipment, and interdisciplinary care. In programs across the United States, the majority of hospice care centers on care delivery by nurses visiting the patient’s home. These nurses represent all levels of practice from nursing assistant, licensed practical or vocational nurse, registered nurse, and advanced practice registered nurse. Patients receive care during benefit period in which attestations are made to the patient’s continued eligibility.

CURRENT STATE OF PALLIATIVE CARE

Forty years later, the basic structure of the Medicare Hospice Benefit remains relatively intact. Eligibility criteria are unchanged, but are more tightly monitored. However, benefit periods have been redefined and recertification processes have been added. Revisions have occurred in reimbursement rates, and in the broader expansion of provider roles. Finally, the Affordable Care Act brought the Medicare Hospice Benefit care into the fold of quality-measurement reporting, similar to all other health care delivery providers (Patient Protection and Affordable Care Act [PPACA], 2010).

Hospice remains a wonderful model of care for patients with end-stage illness and who want to forgo curative treatment. The challenge became what to do for patients diagnosed with life-limiting illnesses who either: do not qualify for hospice; want to pursue curative therapies; or for whom hospice means “giving up” (Casarett & Quill, 2007). The answer is palliative care. Palliative care developed for patients diagnosed with serious illness for whom cure is not possible. However, the illness could have a trajectory of years to days.

Palliative care focuses on quality of life and can be provided concurrently with life-sustaining therapies. In the 1990s, a Canadian physician, Balfour Mount, coined the term palliative care when he brought hospice concepts of caring for patients with life-limiting illness into the academic hospital setting. The focus was on care for patients with serious illness at diagnosis with the potential for care to occur over longer periods. In the United States, this meant more time than possible under the hospice benefit. More specifically, care was moved upstream to diagnosis to provide care that was consistent with patients’ values, preferences, and belief throughout the disease trajectory. Figure 37.1 provides a comparison of hospice and palliative care.

This focus on patient wishes was mandated by the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), the 1995 landmark study that demonstrated a failure to honor patients’ preferences (SUPPORT Principal Investigators, 1995). It revealed continued lack of communication between patients and their health care providers about end of life; high levels of pain reported by the seriously ill and dying; and that in spite of expressed patient preferences that suggested otherwise, aggressive care continued (SUPPORT Principal Investigators, 1995).

Other important documents about dying in America spoke to the demand for palliative care. In 1997, the Institute of Medicine published, Approaching Death, which set the groundwork for subsequent review and analysis (Institute of Medicine, 1997). This report recommended specialty palliative care, endorsed appropriate utilization of medications for pain and symptom management, supported financial investment in palliative care, and called for health care provider education with the inclusion of palliative care principles and practice in both training programs and curriculum textbooks (Institute of Medicine, 1997). The 2001 Institute of Medicine published When Children Die and Crossing the Quality Chasm, which called for significant changes in care of dying children and quality in health care (Institute of Medicine, 2001, 2002). These commentaries focused on the need for better care of dying children similar to adults and for better quality measurement in health care. In 2002, Last Acts—a Robert Wood Johnson Foundation supported entity—published a state-by-state report card of end-of-life care in America, which captured a fairly bleak picture of palliative care in the United States (Last Acts, 2002). Clearly, there was work to be done.

A monograph by the National Hospice Work Group (NHWG) and the Hastings Center, in association with the National Hospice and Palliative Care Organization (NHPCO), titled Access to Hospice Care: Expanding Boundaries, Overcoming Barriers, argued for significant changes in access to palliative care, including all ages, all health settings, and all progressive chronic or serious life-threatening illness and injuries (Jennings, Ryndes, D’Onofrio, & Baily, 2003).

FIGURE 37.1

Comparison of hospice and palliative care.

In 2013, the Institute of Medicine issued Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis (Institute of Medicine, 2013). There were two palliative care-specific recommendations. The first was that the cancer care team should provide patients and their families with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care. The second was that in the setting of advanced cancer, the cancer care team should provide patients with end-of-life care consistent with their needs, values, and preferences.

Most recent, the Institute of Medicine released its 2014 report, Dying in America—Improving Quality and Honoring Individual Preferences Near End of Life (Institute of Medicine, 2014). The report provided five areas for quality palliative care in achieving health care improvement and moving care upstream to patients with serious illness, rather than focusing on end of life: (a) delivery of person-centered and family-focused palliative care; (b) clinician−patient communication and advance care planning; (c) professional education in palliative care; (d) policies and payment for palliative care; and (e) public education and engagement in palliative care (Institute of Medicine, 2014). Over the years, the field of palliative care has matured and is now available at diagnosis of a serious illness across all settings, populations, and ages.

QUALITY AND PALLIATIVE CARE

Quality is and has been an essential component of palliative care. Within hospice, there are guidelines and standards for care. From the outset of the hospice benefit, CMS created the CoPs, as previously described. Most recently updated in 2011, the CoPs articulate essential components of hospice care such as the eligibility criteria, core services, hospice care planning, benefit periods, and coverage. The NHPCO created 10 quality and practice standards: (a) patient- and family-centered care, (b) ethical behavior and consumer rights, (c) clinical excellence and safety, (d) inclusion and access, (e) organizational excellence, (f) workforce excellence, (g) standards, (h) compliance with laws and regulations, (i) stewardship and accountability, and (j) performance measurement (NHPCO, 2011).

Although hospice had standards of care, palliative care did not. This need for quality, consistency, and access was the backdrop to a national discussion regarding national guidelines for palliative care. In 2001, an interdisciplinary meeting of palliative, hospice, and end-of-life leaders convened to create national palliative care standards. This meeting served as the inception of the National Consensus Project for Quality Palliative Care (NCP). With representation from the national palliative care organizations in the United States, this consortium created the Clinical Practice Guidelines for Quality Palliative Care, which was first published in 2004 (NCP, 2004). The guidelines were updated in 2009 and 2013 to ensure that they reflected the maturity of the field, health care reform, and the growing literature within the field (NCP, 2009, 2013).

The document delineates eight domains of palliative care (Table 37.1) and encapsulates the related palliative care-related research (NCP, 2013). The Clinical Practice Guidelines (a) promote quality and consistency, thereby reducing variation in new and existing programs; (b) develop and encourage continuity of care across settings; and (c) facilitate collaborative partnerships among palliative care programs, community hospices, as well as a wide range of other health care delivery settings (NCP, 2013). Rather than set minimally acceptable practices, ideal practices and goals for quality palliative care service delivery are offered. The Clinical Practice Guidelines offer a framework for the future of palliative care in serving as a manual or blueprint to create new programs, guide developing programs, and set high expectations for excellence for existing programs.

In 2006, the National Quality Forum (NQF) adopted the Clinical Practice Guidelines for Quality Palliative Care within the document A National Framework and Preferred Practice for Palliative and Hospice Care Quality (NQF, 2006). The NQF is a private, nonprofit, membership organization created to develop and implement a national strategy for health care quality improvement. Its mission is to improve American health care through the endorsement of consensus-based national standards for measurement and public reporting of health care performance data. Because the NQF is recognized as the national leader in health care quality improvement and representative of the broadest possible array of practice areas and topics, it offered palliative care both legitimacy and recognition within a broad health care focus, to policy makers and payers.

TABLE 37.1

Eight Domains of Palliative Care

Source: National Consensus Project for Quality Palliative Care (2013).

The NQF had not previously addressed the topic of hospice and palliative care. Given the consensus-based process of the guideline development, it was consistent with the NQF goals. The NCP requested the NQF to review and endorse the guidelines. The NQF appointed a Technical Expert Panel to review the guidelines and propose preferred practices. The result was the Framework document, which formulated palliative care standards and preferred practices with implications for reimbursement, internal and external quality measurement, regulation, and accreditation (NQF, 2006). With important recognition of the federal government as the basis for reimbursement, regulation, and accreditation, the significance of this endorsement cannot be overstated. See Appendix 37.1 for the correspondence between the NCP Clinical Practice Guidelines and the NQF Preferred Practices.

The NQF has continued to recognize the importance of quality palliative care. In 2008, the National Priorities Partnership (NPP)—a consortium of U.S. health care organizations working with NQF, identified palliative care as one of six top priorities for improving the U.S. health system (NPP, 2008). They developed a National Priority Partners Palliative and End-of-Life Work Group to consider next steps. NPP released the report, National Priorities & Goals—Aligning Our Efforts to Transform America’s Healthcare. It identified palliative care and end-of-life care as one of the six national priorities that, if addressed, would significantly improve the quality of care delivered to Americans (NPP, 2008). In 2010, the NPP convened a palliative and end-of-life meeting to develop strategies to promote palliative care, including quality-improvement stakeholders, insurers, consumer groups, certification groups, professional groups, and education institutions (NPP, 2010).

Within the federal reporting structures of health care reporting, palliative measure development remains a priority. In 2011, as required by the Affordable Care Act, NQF established the Measure Applications Partnership (MAP), as a public–private partnership entity that reports directly to the U.S. Department of Health and Human Services secretary and advises on quality measures for public reporting across all health care settings and performance-based payment programs (National Quality Forum, 2013). They evaluate measures for CMS for public reporting and reimbursement. There is palliative representation on all of these groups, which promotes and supports palliative-related measures.

A Palliative Care and End-of-Life Care Endorsement Maintenance Measures Project was established in 2011. Over the course of a year, it evaluated 22 measures that addressed assessment and management of conditions and symptoms in patients, including pain, dyspnea, weight loss, weakness, nausea, serious bowel problems, delirium, and depression; patient- and family-centered palliative and hospice care focused on psychosocial needs and care transitions; and patient, caregiver, and family experiences of care (NQF, 2012b). In February 2012, the NQF endorsed 14 quality measures for palliative and hospice care (NQF, 2012a, 2012b). The goal of these measures is to ensure the provision of high-quality palliative care and end-of-life care. The measures, some of which are applicable to all clinical settings and provider types, will help hospice and palliative care providers to improve quality of care and generate ideas for future research.

One of the MAP workgroups, the Post-Acute/Long Term Care (PAC/LTC) workgroup, is responsible for reviewing and advising on hospice and palliative care measures. However, there are measures that occur within the Clinician Workgroup and the Hospital Workgroup. The June 2012 MAP Final Report on Performance Measurement Coordination Strategy for Hospice and Palliative Care states that, “while measurement in this area is new, MAP suggests a phased approach that emphasizes clinically-focused measures at first, but quickly expands to more measures that follow the patient and their full set of experiences rather than the setting or fragments of a patient’s care (often referred to in this report as ‘cross-cutting’)” (NQF, 2012a, p. 3). The MAP report also addresses quality reporting in palliative care, by stating “while there is not a formal quality reporting program for palliative care, settings in which palliative care is provided (e.g., hospitals, home health) are required to participate in federal quality initiatives” (NQF, 2012a, p. 4).

Another project on quality is the joint program between the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, Measuring What Matters (Dy et al., 2015). As the population ages and the demand for this type of care grows, the ability to assess quality throughout the country and across care settings is increasingly important. This project promotes the use of validated indicators in order to ensure consistent quality measures that can ultimately be used for benchmarking, comparison, and quality improvement (Dy et al., 2015). They have identified 10 measures that range from a complete assessment (including physical, psychological, social, spiritual, and functional needs) to a plan for managing pain and shortness of breath to having patients’ treatment preferences followed. There is planning to promote further measurement as the field develops.

Finally, in terms of quality, palliative certification for both health care programs and providers demonstrates specialty practice. Speciality certification is now possible in each of the core services—chaplaincy, medicine, nursing, and social work; as well as hospital-based programs (AAHPM, 2015; Board of Chaplaincy Inc. [BCCI], 2015; Hospice and Palliative Credentialing Center [HPCC], 2015; National Association of Social Workers [NASW], 2015). Different discipline-specific organizations are responsible for certification, which occurs either by examination or meeting standards of practice. See Table 37.2 for a list of disciplines with the association responsible and the eligibility for certification.

In 2011, The Joint Commission (TJC) created voluntary advanced certification in palliative care for inpatient palliative care teams (TJC, 2011). This certification is based on the NCP guidelines. There are currently some 90 hospitals that are certified and information can be found on TJC website. However, currently both TJC and the Community Health Accreditation Partner (CHAP) are working on certification for community-based programs. Both TJC and CHAP are planning to create these from the NCP guidelines: TJC will continue to provide voluntary certification and CHAP will oversee accreditation.

OUTCOMES

Over the past 10 years, research has demonstrated the quality of palliative care. For years, many hospice and palliative providers have intuitively known that they promoted quality of life. However, there were no studies to support these claims. Several studies have now demonstrated better quality of life and survival in patients with the involvement of palliative care (Bakitas et al., 2009; Temel et al., 2010). Other studies in patients with non-cancer diagnoses in outpatient settings have also demonstrated more comprehensive care, higher satisfaction rates, and deaths at home (Brumley et al., 2007; Rabow, Hauser, & Adams, 2004; Rabow, Schanche, Petersen, Dibble, & McPhee, 2003).

In 2012, the American Society of Clinical Oncology (ASCO) released a statement stating that palliative care should be offered to patients with advanced stages of lung cancer as well as for metastatic disease (Smith et al., 2012). At the same time, the American College of Surgeons in collaboration with the Commission on Cancer issued a statement that palliative services should be offered to all patients across the cancer trajectory (American College of Surgeons, 2012). In cardiovascular care, there is a new emphasis on palliative care. In 2014, the American Heart Association and the American Stroke Association issued joint guidelines for palliative care in heart disease and stroke (Holloway et al., 2014). It recognized that palliative care should begin with the onset of such an event. In particular, this includes advance care planning, goal setting, and family support, especially for surrogate decision makers. As more research demonstrates the value and benefit of palliative care, it is expected that more professional organizations will release guidelines specific to integrating palliative care.

TABLE 37.2

Health Disciplines With Palliative Care Specialty Certification

MODELS ACROSS HEALTH CARE VENUES

As the definition of palliative care has broadened to patients with serious illness, the potential to affect a range of populations is apparent. The NCP Clinical Practice Guidelines describe how a serious or life-threatening illness is assumed to encompass populations of patients at all ages within the broad range of diagnostic categories, living with a persistent or recurring medical condition that adversely affects their daily functioning or will predictably reduce life expectancy.

Therefore, palliative care covers a broad spectrum of care. It is “operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care with consideration of patient/family needs, preferences, values, beliefs, and culture. Evaluation and treatment should be comprehensive and patient-centered with a focus on the central role of the family unit in decision making. Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death” (NCP, 2013, p. 9).

As a model, palliative care has several tenets set forth by the NCP (Table 37.3). Both clinical model and service delivery models have been identified (Luckett et al., 2014). Clinically, they range from case management, to liaison, integrated care, and consultative models. Service delivery ranges from clinical networks, managed care networks, and collaboration among community providers (Luckett et al., 2014). Service delivery models have complex considerations and financial implications and are beyond the scope of this chapter. Clinical models range from models in the hospital, home, office, and long-term care setting and are discussed as follows.

TABLE 37.3

Tenets of Palliative Care

Adapted from the National Consensus Project (2013).

Every palliative model provides comprehensive assessment in all domains (physical, spiritual, emotional, and social) related to quality of life. There is simultaneous evaluation and reevaluation of initiation of interventions to manage any of these aspects of care (Partridge et al., 2014). Specifically, palliative care addresses pain and symptoms, psychosocial distress, quality of life, and care preferences. This may look different depending on the diagnosis. The National Comprehensive Cancer Network suggests the following criteria for palliative care: (a) uncontrolled symptoms, (b) moderate to severe distress related to diagnosis and treatment, (c) serious comorbid physical and psychosocial conditions, (d) life expectancy less than 6 months, and (e) patient concerns about the course of disease and/or their treatment options, including when these are expressed by the family (Levy et al., 2014; National Comprehensive Cancer Network, 2012).

Palliative care is an essential aspect of health care, it occurs across a variety of settings. The venue will determine the model of care and the financial aspects of program development. Venues can be based on a health system, a hospital, an office, a long-term care setting, a hospice organization, a home health agency, and in the community. With all the models, there is the overarching principle of giving the right care to the right patients in the right settings.

Although hospice is considered the gold standard of care, it is a subset of palliative care. First of all, it focuses on end-of-life care as a result of the eligibility requirements of a prognosis of 6 months or less without curative measures. Patients must sign onto the benefit. Patients can receive care in the home, nursing home, hospice unit, or residential setting with different levels of intensity depending on the pain and symptom management. Palliative care programs can vary because there are no restrictions of prognosis, treatment direction, election of benefit, or necessity of specific interventions (Table 37.4).

There are positive and negative aspects to various hospice and palliative care models (Wiencek & Coyne, 2014). Hospital-based models are the most defined. Indeed, over the past 15 years, the focus has been on inpatient palliative care. These are inpatient consultative services that consist of an interdisciplinary team. They vary in resources and acuity by academic medical center, community hospital, rural hospital, and essential access hospital. These programs must have interdisciplinary teams; in particular, a team for each of the core service disciplines. These programs may be led by any one of the team members, but are often led by physicians or advanced practice registered nurses.

There can be a range of clinical responsibilities after consultation. This includes consultation only in which recommendations of pharmacological and nonpharmacological interventions are offered; comanagement of a specific pain or symptom in which the team writes orders and prescriptions; assuming the role of a primary care provider responsible for all the care, not just the serious diagnosis; or a mix of all clinical responsibilities. The financial structure is based on billing and reimbursement through Medicare, Medicaid, and other commercial payers, as well as hospital support. The palliative care team may see a range of patients all over a hospital or have specific beds or even a unit.

Hospital-based palliative care models are often the easiest to implement as they usually build off of current hospital structures. They are, by nature, crisis oriented and demand close to 24/7 access. They demand, however, the collaboration of an interdisciplinary team, which may or may not be under the auspices of a palliative care department. The benefits may be lower costs, earlier discharge, higher satisfaction, and better pain management (Casarett et al., 2008).

Office-based palliative care may offer more continuity to longer term issues. Models include outpatient or ambulatory care clinics as well as independent clinics in the community or clinics run by a hospice. These clinics may be imbedded in another specialty clinic such as oncology, heart failure, amyotrophic lateral sclerosis, liver failure, kidney failure, or gerontology. There are also stand-alone or free-standing palliative care clinics. These programs include either interdisciplinary or multidisciplinary teams depending on the structure. Often, however, they lack the full scope of an interdisciplinary team. The nature of these programs is care over a longer period of time with care coordination. The focus is on continuity and relationship building to promote and avoid both emergency visits and hospitalizations. Clinical responsibility of the palliative care team is most often comanagement of pain and symptoms as well as assuming primary care roles or a mix of comanagement and primary care.

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