The U.S. federal government defines palliative care as patient-and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice (Centers for Medicare & Medicaid Services, 2012).
There are specific characteristics that underpin palliative care: (a) services are appropriate at any stage of illness for a person with a serious illness based on the needs and not on prognosis; (b) care provision is holistic and provided by an interdisciplinary team; (c) the circle of care includes patients, families, and palliative and nonpalliative health providers who collaborate and communicate about care needs; (d) services are available in conjunction with or independent of curative or life-prolonging therapies; (e) goals of care for patients and families are supported and congruency is assured throughout the course of illness, during the dying process, and after death (National Consensus Project for Quality Palliative Care [NCP, 2018]).
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, 2015). 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 & Mazanec, 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 was the beginning of the specialty of hospice and palliative nursing.
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 healthcare in which death and dying were ignored. Reaction to this resulted in the creation of the 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 healthcare, offering benefits to patients with terminal illness. At the time, the payment structure was progressive because 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. It should be noted that patients may start on home health before moving to hospice. However, the home health CoPs are more directed toward reversible conditions and nurses may lack the expertise to provide specialty care to patients with serious illness (CMS, 2017). Four categories of hospice care are available: home care, continuous care, inpatient care, and respite care. Patients and families receive a range of services such as 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 to licensed practical or vocational nurse, registered nurse, and APRN. Patients receive care during the 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 and reporting, similar to all other healthcare 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 is what to do for patients with serious illness, diagnosed with life-limiting illnesses, who 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 was developed for patients diagnosed with serious illness for whom cure is not possible. However, the illness could have a trajectory of years to days, and so the “dosing” of palliative care may vary depending on the illness and the stage of severity.
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 43.1 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 healthcare 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 the process of dying in America indicated the demand for palliative care. In 1997, the Institute of Medicine (IOM) published Approaching Death, which set the groundwork for subsequent review and analysis (Field & Cassel, 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 healthcare provider education with the inclusion of palliative care principles and practice in both training programs and curriculum textbooks (Field & Cassel, 1997). The 2001 IOM published When Children Die and Crossing the Quality Chasm, which called for significant changes in care of dying children and quality in healthcare (Field & Behrman, 2002; IOM, 2001). These commentaries focused on the need for better care of dying children similar to adults and for better quality measurement in healthcare. 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.
Comparison of hospice and palliative care.
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).
In 2013, the IOM published Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis (Levit, Balogh, Nass, & Ganz, 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.
In 2014, the IOM released Dying in America—Improving Quality and Honoring Individual Preferences Near End of Life (IOM, 2014). The report provided five areas for quality palliative care in achieving healthcare 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 (IOM, 2014). Currently, over 75% of hospitals with over 300 beds have palliative care services and 33% of counties in the United States have palliative care in their communities (Center to Advance Palliative Care, 2018). In just over 25 years, the field of palliative care has emerged as a specialty and has matured so that it 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 (2011) 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.
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 (NCP) for quality palliative care. 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 have been updated three times to ensure that they reflected the ongoing maturity of the field, healthcare reform, and the growing literature within the field (NCP, 2009, 2013, 2018). The most recent edition focuses on palliative care in the community, and again all populations from neonates to very old adults.
Eight Domains of Palliative Care
Domain 1: Structure and Processes of Care
Domain 2: Physical Aspects of Care
Domain 3: Psychological and Psychiatric Aspects of Care
Domain 4: Social Aspects of Care
Domain 5: Spiritual, Religious, and Existential Aspects of Care
Domain 6: Cultural Aspects of Care
Domain 7: Care of the Patient Nearing the End of Life*
Domain 8: Ethical and Legal Aspects of Care
*Note this domain title has changed three times.
Source: National Consensus Project for Quality Palliative Care. (2018). Clinical practice guidelines for quality palliative care (4th ed.). Richmond, VA: National Hospice and Palliative Care Coalition. Retrieved from https://www.nationalcoalitionhpc.org/wp-content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf.
The document delineates eight domains of palliative care (Box 43.1) and encapsulates the palliative care–-related research (NCP, 2018). From its outset, the aim of the Clinical Practice Guidelines was as follows: (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 and community hospices, as well as a wide range of other healthcare delivery settings (NCP, 2004, 2009, 2013). Rather than setting 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, 2006) adopted the Clinical Practice Guidelines for Quality Palliative Care within the document—A National Framework and Preferred Practice for Palliative and Hospice Care Quality. The NQF is a private, nonprofit, membership organization created to develop and implement a national strategy for healthcare quality improvement. Its mission is to improve American healthcare through the endorsement of consensus-based national standards for measurement and public reporting of healthcare performance data (NQF, 2019a, 2019b). Because the NQF is recognized as the national leader in healthcare 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 healthcare focus to policy makers and payers.
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 measurements, 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 43.1for 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. healthcare 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 the 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). In 2018, the NQF initiated a new Serious Illness Care Initiative funded by the Moore Foundation to examine quality in palliative care. Their work includes identification of existing measures and recommendation of approaches to address measure gaps that exist within serious illness. A summit report to disseminate findings has been released.
Within the federal reporting structures of healthcare reporting, palliative measure development remains a priority. In 2011, as required by the Affordable Care Act, the 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 healthcare settings and performance-based payment programs (NQF, 2019a). They evaluate measures for CMS for public reporting and reimbursement. There is palliative representation on all 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; as well as patient, caregiver, and family experiences of care (NQF, 2012b). In February 2012, the NQF (2012a, 2012b) endorsed 14 quality measures for palliative and hospice care. 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 Care/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). Each year, they provide a summary of metrics reflecting palliative care and care of individuals with serious illness.
Another project on quality is the joint program between the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), 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. Currently, there are two joint HPNA–AAHPM working groups to promote further measurement in the field: Technical Specifications for electronic Clinical Quality Measures (eCQMs) Working Group and the Quality Improvement (QI) Education and Strategies Working Group (AAHPM, 2019a).
Finally, in terms of quality, specialty palliative care designation for both healthcare programs and providers demonstrates quality to the public and insurers. Specialty certification is now possible in each of the core services—chaplaincy, medicine, nursing, and social work, as well as hospital-based programs (AAHPM, 2019b; Advanced Palliative Hospice Social Worker Certification Board, 2018; Board of Chaplaincy, 2019; Hospice and Palliative Credentialing Center, 2015; National Association of Catholic Chaplains, 2019; National Association of Social Workers, 2015). Different discipline-specific organizations are responsible for certification, which occurs either by examination or meeting standards of practice. See Table 43.1 (see textbook) for a list of disciplines with the association responsible and the eligibility for certification.
ACHPN, advanced certified hospice and palliative nurse; ACHP-SW, advanced certified hospice and palliative social worker; APHSW-C, advanced palliative hospice social worker-certified; BCC-PCHAC, board certified chaplain-palliative care and hospice advanced certified; BSW, bachelor’s in social work; CE, continuing education; CEU, continuing-education units; CHPLN, certified hospice and palliative licensed practical/vocational nurse; CHPN, certified hospice and palliative nurse; CHP-SW, certified hospice and palliative social worker; H&P, hospice and palliative; RN, registered nurse; MSW, master’s in social work; SW, social work.
In 2011, The Joint Commission (TJC) created the first voluntary specialty palliative care designation for hospital palliative care teams followed by designation for community-based home health agencies and hospices in 2016 (TJC, 2016). Today, there are several other organizations that offer designation for specialty community-based palliative programs and hospital-based palliative care programs, including Accreditation Commission for Health Care (ACHC), DNV-GL (DNV), and Community Health Accreditation Partner (CHAP; ACHC, 2017; CHAP, 2019; DNV-GL, 2019). Although all the organizations’ survey standards and indicators are steeped with the NCP Guidelines, they vary in eligibility criteria, duration of designation, and cost. For hospitals, both TJC and DNV offer specialty palliative care designation; however, TJC requires the organization to hold TJC primary certification. In the community, both TJC and ACHC offer palliative care designation to home health agencies and hospice and private duty agencies for palliative care delivery who are TJC-and ACHC-certified. CHAP offers a specialty palliative care designation to any eligible care delivery model in the community that meets its requirements, such as clinics, physician/provider groups, or programs in a long-term care setting. See Table 43.2 (see textbook) for a comparison of program specialty palliative care designation.
ACHC, Accreditation Commission for Health Care; CHAP, Community Health Accreditation Partner; CMS, Centers for Medicare & Medicaid Services; CoP, conditions of participation; NCP, National Consensus Project for Quality Palliative Care; TJC, The Joint Commission.
Lastly, to promote quality, there have been various initiatives to assure quality palliative care education for all disciplines. Within nursing, the American Nurses Association and the HPNA released A Call for Action: Nurses Lead and Transform Palliative Care, which stated that all nurses should receive End-of-Life Nursing Education Consortium (-ELNEC) training (ANA & HPNA, 2017). To accomplish this, competencies for nurses to achieve in both undergraduate and graduate nurses education have been established. There was a major revision to the nursing end-of-life competencies to reflect serious illness care. In 2016, Competencies and Recommendations for Educating Undergraduate Nursing Students was developed to be integrated into undergraduate nursing programs (AACN, 2016). In 2019, Graduate Competencies and Recommendations for Educating Nursing Students was developed to be integrated into graduate nursing programs at the master’s and doctorate levels (AACN, 2019).
Over the past 15 years, research has demonstrated the quality of palliative care (Evans, Ison, & Ellis-Smith, 2019). 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. The seminal studies to demonstrate the positive aspects of palliative care, specifically quality of life and survival in patients with the involvement of palliative care, occurred between 2009 and 2010 (Bakitas et al., 2009; Temel et al., 2010). Other studies in patients with noncancer 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). More recent studies have demonstrated cost savings and better care for patients, across age groups, site of care, and diseases (Cassel, Kerr, Kalman, & Smith, 2016, May, Garrido, Aldridge, et al. 2017; May, Garrido, Cassel et al., 2017).
MODELS ACROSS HEALTHCARE 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. Moreover, palliative care crosses all settings. In the community, patients may live in a residence, a group home or shelter, or in long-term care settings such as a skilled facility, assisted living facility, continuing care retirement community, or chronic care facility. They may receive care from office-based practices such as palliative care clinics or disease-specific clinics, outpatient practices, or the like. In the hospital, there may be practices in rural, community, and urban hospitals as well as academic medical centers.
Palliative care focuses on expert assessment and management of physical and psychological symptoms, assessment of caregiver needs, and support and coordination of care. Hence, it is appropriate at any time of a serious illness, provided in an interdisciplinary manner over time, and offered across settings in a manner consistent with goals of the patient (NCP, 2018). As a model, palliative care has several tenets set forth by the NCP (Box 43.2). Both clinical 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 to 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.
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 (American Colleges of Surgeons, 2012; Braun et al., 2016; Ferrell et al., 2017; Holloway et al., 2014; Smith et al., 2012). 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 his or her 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 healthcare, and 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.
Tenets of Palliative Care
1. Palliative care is patient-and family-centered care.
2. There is comprehensive palliative care with continuity across health settings.
3. Early introduction of primary palliative care concepts should begin at diagnosis of a serious or life-threatening illness by the primary team.
4. The goal of palliative care is the relief of physical, psychological, emotional, and spiritual suffering of patients and families. If provided early, it allows patients to achieve quality of life while living with serious illness.
5. Palliative care may be offered concurrent with or independent of curative or life-prolonging care. Patient and family hopes for quality of life are supported throughout the course of illness. At advanced illness and end of life, peace and dignity are preserved during the dying process, and after death.
6. Palliative care team members have clinical and communication expertise achieved through education, training, and specialty palliative care certification.
7. Palliative care is interdisciplinary and collaborative. Communication between patients, families, palliative care specialists, and other healthcare providers is essential to provide patient-centered care and assure quality throughout care transitions.
8. Equitable access to quality requires a commitment to building primary palliative care skills across all disciplines and settings as well as building the interdisciplinary workforce of specialty palliative care providers.
Source: Adapted from the National Consensus Project for Quality Palliative Care. (2013). Clinical practice guidelines for quality palliative care (3rd ed.). Pittsburgh, PA: Author; National Consensus Project for Quality Palliative Care. (2018). Clinical practice guidelines for quality palliative care (4th ed.). Richmond, VA: National Hospice and Palliative Care Coalition.
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 43.3, see textbook).
APRN, advanced practice registered nurse; DO, doctor of osteopathy; MD, medical doctor; PA, physician assistant.
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 critical or 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 APRNs.
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. Currently, the most common financial structure is based on billing and reimbursement through Medicare, Medicaid, and other commercial payers, as well as hospital support. However, within healthcare reform, there may be alternative payment models that pay either per-member-per-month or by incentives of care delivered. 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 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, Cassel et al., 2016).
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, home health agency, or a collaborative effort. These practices 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. 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. To be considered as a specialty palliative care service, the clinics must be either interdisciplinary or multidisciplinary teams depending on the structure. Very often, however, office-based practices lack the full scope of an interdisciplinary team, delineating them more as a palliative provider than interdisciplinary.
Many office-based programs developed from hospital teams. However, many are growing in the community that are separate from hospital teams. Office-based models necessitate different resources depending on the type of practice and ownership—outpatient clinic as part of a hospital, ambulatory clinic as part of a health system, or independent clinic as part of a hospice or palliative care provider. Resources depend on the financial structure of the clinic, in particular whether it is hospital or system-owned, independent, or supported philanthropically. Often, the primary providers are physicians and advanced practice providers because their visits are reimbursable under Medicare, Medicaid, and commercial insurance. The benefits of palliative care are reduction in emergency department admissions, hospital admissions, and better patient satisfaction (Bakitas et al., 2009; Brumley et al., 2007; Cassel et al., 2016; Kerr & Cassel 2014; May, Garrido, Aldridge, et al., 2017; May, Garrido, Cassel, et al, 2017; Temel et al., 2010).
Home-based palliative care models are growing. The focus is coordinating care from service agencies and delivering clinical care in the home. These programs work well for geriatric patients who have avoided the clinic or hospital for any care, but also for patients who are too sick to travel to appointments. It is essential for these programs to coordinate with service agencies such as Councils on Aging, Meals on Wheels, Parish Nurses, and so on. Some programs have clinicians who visit patients whom they have seen in the hospital. Other programs enroll patients from the community who lack primary care providers. Clinical responsibility is most often held by primary providers, although there may be comanagement of pain and symptoms as well. These teams are multidisciplinary in nature, depending on workforce availability and financial structure. Reimbursement occurs through Medicare, Medicaid, and commercial payers.
There is wide variability in home-based models differentiated by structure and services. Their benefit is keeping people in their homes and community. However, because of reimbursement and revenue streams, home-based models may not encompass a full interdisciplinary team. In addition, depending on the geography of the area covered, there may be issues in the number of patients seen or financial implications of transportation. However, there is research to suggest that home-based palliative care decreases healthcare costs, reduces 30-day hospital readmission rates, and increases patient satisfaction (Brumley et al., 2007; Cassel et al., 2016; Enguidanos, Vesper, & Lorenz, 2012; Kerr & Cassel, 2014).
Palliative care in the long-term care setting is less developed and not well-delineated (Ersek & Carpenter, 2013). Broadly, it includes consultation to patients in the skilled nursing facility, assisted living facility, nursing home, or chronic and acute rehabilitation settings. Although there is research about pain and symptom management for this population as well as advance care planning, there are few commentaries on models (Ersek & Carpenter, 2013). It has been suggested that outside of hospice, there are two models—external consultative teams and internal consultative teams (Ersek & Stevenson, 2013). Either model includes a variety of interdisciplinary team members to provide consultation to these complex populations. However, palliative care initiatives in nursing homes are beset with the challenges of high staff turnover, staff shortages of qualified individuals, regulatory requirements, reimbursement, and various health policies (Strumpf, Tuch, Stillman, Parrish, & Morrison, 2004).
Within a health system, such as an accountable care organization (ACO) or Patient-Centered Medical Home (PCMH), care is focused on keeping the patient out of the hospital. This palliative care model focuses on primary palliative care in which there is a strong communication and care coordination across the system. In particular, there is a major presence of nurse case management with a focus on advance care planning. There is constant assessment of the needs of the patient and the right services. Here, quality care for patients with serious illness may include hospital-, office-, and home-based palliative care. However, the model for palliative care will emanate from primary care practices.
Finally, there are palliative care models that occur broadly under Medicare programs such as under the Hospice or Home Health Benefit (Table 43.4, see textbook). However, there are limitations because of Medicare regulations. First, under the Medicare Hospice or Home Health Benefit, palliative care may lack interdisciplinary care because nurses most often provide the care alone. Palliative care under the Medicare Hospice Benefit is time-limited to only a few consultation visits. Palliative care under Home Health is limited by the necessity that the patient qualify for homebound status. Moreover, hospices and home health agencies must attend to antitrust issues. Therefore, palliative care programs under Hospice and Home Health Benefits are restricted in their breadth and scope.
CASE STUDY 43.1
Sophie Jones, ACNOPC-BC, ACHPN, is a palliative nurse practitioner who works in a healthcare system that has a hospital, a clinic, and a home-based program. She performs palliative care consultations for patients with serious illness in a community palliative care clinic 3 days a week. She then sees patients in the home 2 days a week. She receives referrals from all eligible licensed professionals (physicians, physician assistants, nurse practitioners, and clinical nurse specialists).
As part of her evaluation, she initiates advance care planning by eliciting a patient’s and family’s goals of care, and, if they are ready, complete the appropriate paper work, including the delegation of a surrogate decision-maker, advance directive/living will, and out-of-hospital orders for life-sustaining treatment (commonly known as Provider/Physician/Medical Orders for Life-Sustaining Treatment or POLST/MOLST forms). Sophie performs the Edmonton Symptom Assessment System on each patient to determine his or her symptoms and distress. She orders diagnostics as necessary to create a differential diagnosis. In order to implement a care plan, she collaborates with the patient’s primary care providers. As part of her comanagement role, she writes orders and prescriptions for pain and symptom management when she makes recommendations and develops a palliative care plan. She records consultation documentation for new patients as well as follow-ups in the electronic health record (EHR).
Her clinical responsibilities include both a consultative role in the clinic, when she collaborates with other providers, and a primary care role in the home, when she assumes responsibility for the patient. She offers 24/7 coverage during the week. On the weekends, the covering provider for primary care covers both her clinic patients and her home patients.
She bills for her services under Medicare Part B professional billing for a palliative care encounter, as well as symptoms, and a primary diagnosis. She also bills for advance care planning (ACP). There are occasions in which she visits a hospitalized patient to provide continuity in terms of goals of care. The health system tracks her visits and her patient satisfaction scores are the highest in the system. Her patient satisfaction scores demonstrate better quality of life and better communication with her care plan. Her symptom assessment data demonstrates that on average her patients’ symptoms are managed within 48 hours.
She is able to recoup 40% of her salary in billing and reimbursement. Additionally, her care offers the ACO savings of around US$400,000 per year. This is achieved by her ability to prevent 30-day readmission hospitalizations and emergency department visits as well as prevent transfers to the intensive care unit for her patients. She is also able to promote earlier admissions to hospice and assure goal concordant care consistent with the patients’ wishes.
Palliative care is an important model of care. It promotes quality patient-and family-centered care that incorporates patient and family values and preferences of care in the settings where patients and families prefer to receive care. As healthcare reform continues, palliative care is essential in promoting patient-centered and family-focused care in accordance with patient preferences. Palliative care promulgates the foundational principle of healthcare by advocating for the four Rs—the right care, for the right patient, at the right time, in the right place. It has been demonstrated that palliative care increases patients’ quality of life, satisfaction, improves pain and symptom management, and reduces cost of care. Although no one model of palliative care fits every setting, palliative care is being established for all ages in all types of hospitals (i.e., rural and community, not just urban or academic medical centers), offices (i.e., specialty adult or pediatric palliative care clinics or embedded in other specialties such as geriatrics, oncology, heart failure, pulmonology, or neurology), the home (i.e., the residence where the patient lives), and in long-term care settings. Nurses have a prominent role in all palliative care models as the largest segment of healthcare providers who are most often at the forefront of clinical care. There are many opportunities for developing competencies and skills in serious illness care. They can also demonstrate their skills through certification. Nurses must implement new initiatives, which build their skills, education, and training to practice to the full extent of their scope of practice (IOM, 2011). They have the capacity to lead and transform care in serious illness and beyond with creating new models. In this way, nurses will assure access to quality palliative care.
Discipline-Specific Specialty Palliative Care Certification
Hospice and Palliative Credentialing Center
Specialty certification in hospice and palliative nursing—nursing assistant, registered nurse, advanced practice registered nurse, pediatrics
Specialty certification in hospice and palliative chaplaincy
Program-Specific Specialty Palliative Care Designation
Association of Health Care Accreditation (AHCA)
Community Health Accreditation Partner (CHAP)
Specialty certification/accreditation-community-based programs
DNV-GL. (2018). https://www.dnvgl.us/assurance/healthcare/PalliativeCare.htm
The Joint Commission (TJC)
Specialty certification in palliative care
1. Hospital-based programs
2. Hospices and home health agencies
End-of-Life Nursing Education Consortium (ELNEC)
Curriculum offerings—core, pediatrics, geriatrics, veterans, critical care, APRN, international products—articles about ELNEC and nursing education, 15th Anniversary Report
Palliative Care Communication
Products—Online communication curriculum, Communication in Palliative Nursing, Textbook of Palliative Care Communication
Palliative Care Standards
National Consensus Project for Quality Palliative Care (NCP)
Clinical practice guidelines for quality palliative care (4th ed.), 2018
1. Defines the domains and characteristics for quality palliative care across all settings in the United States.
2. Serves as the basis for specialty palliative program designation by The Joint Commission (TJC) and Community Health Accreditation Partner (CHAP).
National Priorities Partnership
National Priorities & Goals—Aligning Our Efforts to Transform America’s Healthcare
Palliative Care and End-of-Life Convening Meeting Synthesis Report
Measure Applications Partnership—Performance Measurement Coordination Strategies for Hospice and Palliative Care Final Report
National Quality Forum (NQF)
A national framework and preferred practices for care and hospice care—A consensus report, 2006
Develops palliative care preferred practices based on the NCP Clinical Practice Guidelines
Palliative Care and End-of-Life Care—A Consensus Report
Professional Specialty Palliative Care Organizations—Nursing
Hospice and Palliative Nurses Association (HPNA)—individual membership necessary
The specialty palliative nursing organization for all levels of nursing—the nursing assistant, the licensed practical/vocational nurse, the registered nurse, and the advanced practice registered nurse
Conferences—Annual Assembly, Clinical Practice Forum
1. Journal of Hospice and Palliative Nursing,
2. Journal of Palliative Medicine
Networking—Special interest groups—APRN, pediatrics, bioethics, community, research, heart failure, intensive care, LGBTQ, international, education
Products—Palliative Nursing Scope and Standards (ANA and HPNA), Compendiums of Non-Cancer Diagnoses, Core Curriculum for the Hospice and Palliative RN and APRN, Primer on APRN Reimbursement, Palliative Nursing Manuals, and Patient Teaching Sheets
Professional Specialty Palliative Care Organizations—Non-Nursing
American Academy of Hospice and Palliative Medicine (AAHPM)—individual membership necessary
Conferences—Annual Assembly Journals
1. Journal of Palliative Medicine
2. Journal of Pain and Symptom Management
Products—Palliative care content—Essentials in Hospice and Palliative Care, position statements, AAHPM smart brief on current research and current events, primer of palliative care
American Society of Clinical Oncology (ASCO)—individual membership necessary
Online Education—ASCO Learning
Conference—Palliative Care in Oncology Symposium
1. Journal of Clinical Oncology
2. Journal of Oncology Practice
California Health Care Foundation—no membership necessary
Serious Illness and End-of-Life Care
1. Snapshots of Palliative Care Practices
2. Up Close: A Field Guide to Community-Based Palliative Care in California
3. Innovative Models in Palliative Care Fact Sheet
4. Weaving Palliative Care Into Primary Care: A Guide for Community Health Centers
Center to Advance Palliative Care (CAPC)—organizational membership necessary
Online education—Clinical and technical assistance courses for palliative care delivery and program development
Conferences—CAPC seminar, webinars, virtual office hours
Free products—Tools, Articles, Team Wellness Monograph, State-by-State Report Card
NHPCO—organizational membership necessary
Conferences—Clinical Team and Pediatric Conference, Management and Leadership Conference
Products—Newsbriefs, position statements, technical assistance
1. Journal of Pain and Symptom Management
Social Work Hospice and Palliative Network (SWHPN)—individual membership necessary
Products—SWHPN Newsbriefs, SWHPN Voice
1. Journal of Social Work in End of Life and Palliative Care
Society of Pain and Palliative Care Pharmacists (SPPCP)—individual membership necessary
1. Journal of Pain and Palliative Care Pharmacotherapy
American Association of Critical Care Nurses—individual membership necessary
Online education—Self-Assessment: Palliative and End-of-Life Care
Conferences—National Training Institute (NTI)
1. Critical Care Nurse
2. American Journal of Critical Care
Products—Acute and Critical Care Choices Guide to Advance Directives
AACN Protocols for Practice: Palliative Care and End-of-Life Issues in Critical Care
Repository for the Robert Wood Johnson Foundation Promoting Excellence in End-of-Life Care—Palliative Care in the Intensive Care Unit
American Nurses Association (ANA)
General Resources and Individual Membership
Journal—American Nurse Today
Professional issues panel—Palliative and Hospice Nursing
Products—Nursing Scope and Standards, Code of Ethics for Nursing, Palliative Nursing Scope and Standards (ANA and HPNA)
1. Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at End of Life, Nursing
2. Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions
3. Euthanasia, Assisted Suicide, and Aid in Dying
Oncology Nursing Society (ONS)—individual membership necessary
Conferences—Congress, Fall Institute
1. Oncology Nursing Forum
2. Clinical Journal of Oncology Nursing
Networking—special interest groups
Products—core curriculum, core competencies, position statements
National Comprehensive Cancer Network
Guidelines for palliative care
Guidelines for psychosocial distress
Oxford University Press
Nursing-specific references—Ferrell, B., & Paice, J. (Eds.). (2019). Oxford textbook of palliative nursing (5th ed.); Dahlin, C., Coyne, P., & Ferrell, B. (Eds.). (2016). Advanced practice palliative nursing; Palliative nursing manuals with HPNA based on the eight domains of the National Consensus Project for Quality Palliative Care
Textbook of palliative care communication
Updated: November 2020
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Enguidanos, S., Vesper, E., & Lorenz, K. (2012). 30-Day re-admissions among seriously ill adults. Journal of Palliative Medicine, 15, 1356–1361. doi:10.1089/jpm.2012.0259. Evidence Level IV.
Ersek, M., & Carpenter, J. (2013). Geriatric palliative care in long-term care settings with a focus on nursing homes. Journal of Palliative Medicine, 16(10), 1180–1187. doi:10.1089/jpm.2013.9474. Evidence Level V.
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Hospice and Palliative Credentialing Center. (2015). Position statement—Value of hospice and palliative certification. Retrieved from https://advancingexpertcare.org/position-statements/. Evidence Level VI.
Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academies Press. Evidence Level VI.
Institute of Medicine. (2011). The future of nursing: Leading change, advancing health. Washington, DC: The National Academies Press. Retrieved from http://nationalacademies.org/hmd/reports/2010/the-future-of-nursing-leading-change-advancing-health.aspx. Evidence Level VI.
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