Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 227-233
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PALLIATIVE CARE DELIVERY MODELS CLAREEN WIENCEK AND PATRICK COYNE OBJECTIVES: To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed.
DATA SOURCES: Literature review. CONCLUSION: The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. IMPLICATIONS
FOR NURSING PRACTICE: Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient’s condition.
KEY WORDS: Palliative care, delivery models, generalist and specialist palliative care
Clareen Wiencek, RN, PhD, CNP, ACHPN: Nurse Manager, Thomas Palliative Care Unit; Program Director, The Center for Integrative Pain Management, Virginia Commonwealth University Health System, Massey Cancer Center, Richmond, VA. Patrick Coyne, RN, MSN, ACHPN, ACNS-BC, FAAN, FPCN: Clinical Director, Palliative Care Program, Virginia Commonwealth University Health System, Massey Cancer Center, Richmond, VA. Address correspondence to Clareen Wiencek, RN, PhD, CNP, ACHPN, VCU Massey Cancer Center, North Hospital, 4th floor, 1300 East Marshall St., PO Box 985934, Richmond, VA 23298. e-mail: cwiencek@ mcvh-vcu.edu Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.004
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ALLIATIVE care programs across the United States have grown by a dramatic 157% in hospitals with more than 50 beds in the past decade.1 That growth is expected to continue.2 However, considerable geographic variation in access and in the services provided by these programs does exist.3 The mission, size, profit or non-profit status of the program and regulatory factors of the city or state can account for this variability. Despite this variability, there is strong evidence that palliative care improves quality of life and symptom management for patients with advanced cancers and other serious illnesses and results in cost savings or cost avoidance by reducing aggressive interventions with limited benefit.4-10 This article presents
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an overview of the features, advantages, and disadvantages of four delivery models for palliative care. These four models include ambulatory palliative care clinics, home-based palliative care, inpatient palliative care units (PCUs), and inpatient consult services. In addition, the role of the generalist and specialist provider in palliative care is discussed. This information is important for the oncology nurse and the advanced practice registered nurse (APRN) to incorporate into their practice to improve the quality of life for patients and families.
MODELS OF CARE Ambulatory Palliative Care Clinics Ambulatory-based palliative care clinics are a new model of care and one of the fastest growing segments given that acute inpatient care was the primary focus for the past two decades.1,2,11 The ideal features of ambulatory-based palliative care include the collaboration of interdisciplinary team members; physicians, nurses and APRNs, social workers, chaplains, psychologists, and physical and occupational therapists who focus on the assessment and management of symptoms that impact the patient’s quality of life and functional status. A recent study showed that an outpatient palliative care model decreased hospital admission, improved quality of life, and prolonged survival in patients with lung cancer.9 In addition, the ambulatory setting may be less threatening to patients and families, and providers are more likely to refer patients for ambulatory-based palliative care. Some evidence also suggests that the renaming of palliative care to ‘‘supportive care’’ increases the likelihood that oncologists will make referrals to palliative care.12,13 A palliative care approach in the ambulatory setting is appropriate for patients with advanced solid tumors (ie, lung, pancreas, colon, breast, brain and bladder; hematologic disorders such as leukemia or sickle cell disease); advanced heart failure and patients with ventricular assist devices; dementia; progressive neuro-generative disorders such as amyotrophic lateral sclerosis [ALS]; and end stage organ failure such as liver and renal failure. Another advantage of the ambulatory setting is the decrease in emergency department visits by facilitating direct admits to acute care from the clinic setting. Also, ambulatory clinics are an ideal setting for the nurse with expert palliative care and symptom management skills to provide
goal-directed and cost-effective care to patients with serious illness. Disadvantages of ambulatory palliative care may include limited physical space or facilities and limited access to all members of the interdisciplinary team and/or program resources. Home-Based Palliative Care Like the ambulatory clinic, home-based palliative care programs have a significant potential to decrease health care costs by reducing acute care hospitalizations. More importantly, palliative care in the home setting can serve a population of frail elderly or seriously ill for whom transportation to the hospital is a burden. There is evidence that home-based palliative care increases satisfaction with care, reduces health care costs, and reduces 30-day re-admissions.7,14-16 Features of this model of palliative care delivery include the provision of goal-directed care that keeps patients in their home or community setting, collaboration among interdisciplinary team members, team leadership by APRNs and collaborating physicians, and integration of family or caregivers. As mentioned previously, the advantage to home-based palliative care is bringing the care to the patient to avoid burdensome transportation to ambulatory clinics. Additional benefits include reduction in hospitalizations and cost of hospital stays, as demonstrated by the OACIS (Optimizing Advanced Complex Illness Support) program at LeHigh Valley Health System in Pennsylvania.17 Specialized palliative care delivered in the home by APRNs allows for optimal outcomes through coordination of care, medical management, psychosocial support, and education.17 Some of these patients are too healthy to qualify for hospice; therefore, home-based palliative care may be the preferred level of care consistent with their goals or preferences. Disadvantages may include limited access to the full interdisciplinary team or program resources more easily accessed within the walls of the affiliated health care system. Inpatient Palliative Care Units Most hospital-based palliative care is provided by consultation services as fewer than 10% of hospitals have designated PCUs.18 Despite this low prevalence, inpatient PCUs concentrate the specialized skills and knowledge of nurses and physicians, resulting in optimal care of complex palliative care patients. Further, these expert clinicians collaborate with all members of the
PALLIATIVE CARE DELIVERY MODELS
interdisciplinary team to address the multidimensional aspects of quality of life: physical, psychological, social, and spiritual. Patients appropriate for admission to a PCU can be very complex as the transition between goals of cure and aggressive therapy shift to goals of quality of life, symptom management, and comfort. These patients may require aggressive pain and symptom management with opioids and adjuvant medications, multiple IV therapies, complex respiratory care (including tracheostomies or high-flow oxygen systems), complex wound management, dialysis, chemotherapy, radiation therapy, and other acute treatments. Features of PCUs include the centralization of expert palliative care nurses, APRNs and physicians, a designated unit or cluster of beds, a mission that focuses on quality of life rather than diagnosis and cure, the simultaneous delivery of palliative care and acute care, a patient–familyfocused environment, and skilled care of patients at end of life and support of their loved ones. Casarett and colleagues8 reported greater satisfaction with inpatient palliative care than just palliative care consult services in Veterans Administration hospitals across the country. However, little is known about the state of inpatient PCUs in non-federal facilities. A Web-based survey to describe the state of inpatient re-admission is being conducted at Virginia Commonwealth University to address this gap in knowledge (personal communication, Clareen Wiencek, Virginia Commonwealth University Health System, February 9, 2014). Additional advantages of inpatient PCUs include the ability to perform certain procedures (such as lidocaine or ketamine infusions for intractable pain) and the provision of a distinct space for palliative care training, research, and philanthropic activities.19 Disadvantages may be the maintenance of an average daily census that meets budgetary requirements, off-service admissions, 24/7 coverage by qualified palliative care providers, and lack of national benchmarks for PCU staffing models. Also, conflict may result between patient-specific end-of-life goals and many of the regulatory standards to which all acute care units must comply with (ie, prevention of hospital-acquired pressure ulcers or catheterassociated urinary tract infections). Of note, some hospital administrators may be concerned that inpatient PCUs will increase hospital-wide mortality rates. Cassel and colleagues20 reported on mortality statistics over the 10 years of operation of their inpatient PCU. The PCU did not
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increase hospital mortality rates, which remained at 3% of discharges, but did impact the site of death with about one third of deaths occurring on the PCU.20 Inpatient Consultation Services Consultation services have historically been the most prevalent delivery model for palliative care in US hospitals. These are less resource intensive than inpatient PCUs because a designated space is not required and a consult service can be made up of just one team member. Features of consult services include a palliative care trained APRN or physician as the primary provider with access to or a defined relationship with other members of the interdisciplinary team such as palliative trained social workers, chaplains, psychologists, volunteers and therapists; use of standardized symptom assessment tools and management protocols; definition and development of the consultant relationship; defined scope of practice; identification of outcome metrics to measure impact of the service; and data collection and analytics. The advantages of inpatient consultation services include rapid, less resource-intensive implementation, less than 24/7 coverage (so less impact on staffing resources), more cost effective, less intense responsibility and therefore easier to maintain, and greater penetration across a healthcare system. Casarett and colleagues5 reported that palliative care consultations had a significant positive impact on families’ perception of the care their loved one received, higher scores for information, communication, and psychoemotional support, and a positive benefit from earlier palliative care consults in the course of the patient’s illness. Disadvantages may affect patient outcomes. For example, there may be a decrease in the management of pain and symptoms if the primary service does not follow the consult recommendations, reduced impact on system wide practice, reduced opportunity to standardize care of patients with serious or life-limiting illness, and lack of 24-hour coverage for palliative emergencies.6
PALLIATIVE NURSING ROLES Nurses’ roles within hospital-based palliative care may vary considerably. Nurses may act as the primary bedside nurse or as the APRN responsible for primary management of the patient and,
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in some settings, may even be the attending physician of record. Palliative care nurses can be found in almost any location within the acute care setting, including PCUs, intensive care units, the emergency department, rehabilitation units, pediatrics, as well as general medical–surgical units.21,22 Rehabilitation facilities or units may provide a unique setting for palliative care because many of these patients have multiple comorbidities and serious illness. An experienced clinician can provide goal-directed care that simultaneously improves quality of life and functional status. Long-term care, much like rehabilitation, requires expertise in symptom management and care coordination in the elderly and disabled population. Many hospice providers may find a beneficial role in working with long-term care facilities to meet the needs of patients and families and the staff.23 Prison units and psychiatric units in the acute care setting also offer nontraditional opportunities for palliative care nursing at the generalist and advanced practice level. Forensic care has often been neglected, but as the inmate population ages, the prevalence of persons with serious illnesses and multiple chronic conditions will increase. There is a growing movement to promote quality of life for this population and to meet staff as well as state and federal guidelines.24 Similar conditions apply to the psychiatric population, which may present with serious medical conditions that would be amenable to palliative care. Generalist and Specialist Palliative Care The aging population and the increasing prevalence of diseases associated with aging (eg, cancer, heart disease, and dementia) will fuel the demand for palliative care in the coming years. The fact that there will be many seriously ill patients with unmet palliative care needs for specialized teams to care for has led to the distinction between primary or secondary palliative care as provided by generalist and specialist clinicians.25 Evidence is mounting about the value of palliative care, as specialists are often consulted for many patients, regardless of complexity. However, some experts assert that many elements of palliative care can and should be provided by the primary service, regardless of the specialty focus and that, in some cases, adding another specialty team to a patient’s care may complicate communication and undermine existing relationships.25 Therefore, primary
palliative care as provided by the generalist is being differentiated from specialty palliative care. The key elements of primary palliative care include basic pain and symptom management, discussions about the patient’s goals of care, prognostication, advance care planning including discussion of the benefits and burdens of resuscitation, and proactive discussion and documentation of code status. Key elements of secondary palliative care include management of complex or refractory pain unresponsive to first- and second-line drugs, management of complex or refractory symptoms associated with advanced disease, management of complex and multidimensional depression, grief and existential distress, assistance with cases of futility, and expert facilitation of care in the case of conflict among the stakeholders (ie, patients, families, staff and provider teams).25 The generalist nurse who provides primary palliative care has the basic skills and knowledge to care for patients with chronic and serious illness, as well as those at end of life. The generalist nurse understands that palliative care begins at the time of diagnosis and can provide basic pain and symptom management. These nurses are skilled to introduce advance care planning and are familiar with community resources such as hospice. In addition, they understand the trajectory of common cancers, potential life-limiting conditions that require critical decisions, and know when a palliative care specialist is required for complex pain and symptom management. All oncology nurses should possess these generalist skills to meet the needs of patients with advanced cancer. The specialist nurse has expert knowledge and skills in pain and symptom management, pathophysiology of multiple chronic and serious illnesses, and is skilled in communication and advance care planning. The APRN with specialist skills has a unique role to positively impact patient- and system-level outcomes.26 The role of the APRN is to provide: Comprehensive pain and symptom management Expert pain and symptom management. Expert communication skills for exploration of quality of life, informed decision-making, goals of care discussions, and to conduct family meetings An organized plan of care for a patient’s dying in terms of setting, proactive pain and symptom
PALLIATIVE CARE DELIVERY MODELS
management, and education for patient, family, and staff about the dying process Psychosocial and emotional support to the patient and family in the illness trajectory, providing presence in the journey Cultural and spiritual dimensions of care as specified by the patient and family Collaboration with members of the interdisciplinary team to meet the multidimensional aspects of quality of life for each patient and family
STANDARDS FOR PALLIATIVE CARE National standards for quality palliative care can guide providers, whether generalist or specialist, toward optimal outcomes. The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines 3rd edition outlines eight standards and the National Quality Forum developed a national framework and preferred practices for palliative and hospice care.27,28 Both standards are excellent resources available to generalists. Specialist palliative care providers should have a sound working knowledge of both sets of standards. The National Consensus Project for Quality Palliative Care (NCP) is a partnership of five national palliative care organizations: The American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, the Center to Advance Palliative Care, and the National Hospice and Palliative Care Organization. The NCP guidelines were developed to promote the growth and quality of palliative care programs, establish definitions of palliative care, set goals for access to quality palliative care, reduce variation, foster performance measurement and quality improvement, and promote continuity. The guidelines cover eight domains of palliative care: 1) structure and process; 2) physical aspects; 3) psychological and psychiatric aspects; 4) social aspects; 5) spiritual, religious, and existential aspects; 6) cultural aspects; 7) care of the patient at end of life; and 8) ethical and legal aspects. The third edition of the NCP guidelines reflects current practice and is consistent with the two previous editions, except that the title of domain 7, ‘‘care of the patient at end of life,’’ was changed to ‘‘care of the imminently dying patient.’’ The publication of the third edition reflects the maturation of the discipline, the changes in practice, the continued growth in
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the palliative care evidence base, and the impact of national seminal events (such as the health care reform mandated in the Patient Protection and Affordable Care Act). The precepts at the core of palliative care are found throughout the NCP guidelines, including patient–family-centered care, early introduction of palliative care at time of diagnosis, comprehensive palliative care across cares settings, interdisciplinary teamwork, expertise in clinical and communication skills, relief of suffering, and focus on quality.27 While publication of the NCP guidelines helped establish the definition and scope of palliative care, the National Quality Forum’s National Framework and Preferred Practices for Palliative and Hospice Care Quality (NQF Preferred Practices) was also an essential step in the acceptance and implementation of those guidelines by the larger healthcare community.28 The NQF is a nonprofit public–private partnership focused on improving the quality of health care through voluntary consensus standards. The 38 NQF Preferred Practices are based on the NCP guidelines. It also recommends a framework for creating a quality measurement and reporting system that may be used to support improved reimbursement for palliative care services. Together, the NCP guidelines and the NQF Preferred Practices set the performance standards for new and existing palliative care programs.27,28 Quality initiatives in palliative care were further strengthened in 2011 when The Joint Commission (TJC) launched advanced certification for palliative care.29 This disease-specific certification recognizes hospital inpatient palliative care programs that demonstrate exceptional patient- and family-centered care according to over 40 standards in program management, provision of care, information management, and performance improvement. TJC used the NCP guidelines to develop this certification program. This 2-year renewable certification is recognition of the importance of palliative care to quality health care outcomes and is recognized as a major landmark for the specialty. There are several reasons why these national guidelines and TJC certification are indispensable to the professional practice of palliative care nurses and APRNs. First, the guidelines establish standards for program development and for clinical outcomes and serve as a nationally accepted benchmark of quality. Both guidelines set the standard that palliative care teams must be
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interdisciplinary and that patients and families must have access to palliative care expertise 24 hours per day, 7 days per week. At the level of patient outcomes, the NQF Preferred Practices advocate for screening and assessment of symptoms with standardized scales,28 and the NCP guidelines call for prompt response to psychological symptoms and regular documentation of response to treatment.27 Second, the NQF Preferred Practices and NCP guidelines set standards for educational preparation for nurses, APRNs, and members of the palliative care team.27,28 APRNs are ideally suited to take a leadership role in providing experiences for all team members in the range of settings where patients receive care. An additional benefit to the use of the NCP guidelines and NQF Preferred Practices and attainment of TJC advanced certification for palliative care is to conduct meaningful performance improvement activities using these national benchmarks. Nurses and APRNs as leaders on their teams can use individual standards to form the core of performance improvement measures and plans, thereby, elevating the quality of the structure, processes, and outcomes of the program.
CONCLUSION Palliative care programs across the US have experienced incredible growth in the past 10 to 15 years, and that growth is projected to continue. Significant geographic variability exists
not only in access to such programs but also in program components. The four types of palliative care programs are inpatient consultation services, the most prevalent; inpatient palliative care units (minimal prevalence in the hospital setting); ambulatory clinics; and the newest, home-based palliative care. While all four exist along a continuum of service delivery, ambulatory and homebased have the greatest potential to reduce the soaring costs of hospital-based care. All four have the potential to improve quality of life, improve pain and symptom management, and deliver goal-directed care to patients with cancer and other serious illnesses. This article addressed the features, advantages, and disadvantages of each model of palliative care programs. As the population ages, the need for palliative care will increase, necessitating for generalists, in all disciplines, to provide primary palliative care. Secondary palliative care should be provided by specialists with advanced skills and knowledge in the management of complex pain and symptom syndromes associated with serious illness and with advanced consultative and communication skills to help patients and their families and the providers caring for them negotiate the complex transition from goals of cure and diagnosis to quality of life and comfort. National standards are available to guide this process and ensure the delivery of quality palliative care. Optimal patient- and system-level outcomes will result from the use of these delivery models.
REFERENCES 1. Center to Advance Palliative Care. Press release. Available at: http://www.capc.org/news-and-events/releases/-3-29-13. Accessed July 1, 2014. 2. Meier DE. The development, status, and future of palliative care. In: Meier DE, Isaacs SL, Hughes RG, eds. Palliative care: transforming the care of serious illness. Princeton: Robert Wood Johnson Foundation; 2010: pp. 1-76. 3. Goldsmith B, Dietrich J, Du Q, Morrison RS. Variability in access to hospital palliative care in the United States. J Palliat Med 2008;11:1094-1102. 4. Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with United States palliative care consultation programs. Arch Intern Med 2008;168:1783-1790. 5. Casarett D, Pickard A, Bailey FA, et al. Do palliative care consultations improve outcomes? J Am Geriatr Soc 2008;56:593-599. 6. Smith TJ, Coyne PJ, Cassel JB. Practical guidelines for developing new palliative care services: resource management. Ann Oncol 2012;23(suppl 3):70-75.
7. Enguidanos S, Vesper E, Lorenz K. 30-day re-admissions among seriously ill adults. J Palliat Med 2012;15:1356-1361. 8. Casarett D, Johnson M, Smith D, Richardson D. The optimal delivery of palliative care: a national comparison of the outcomes of consultation teams versus inpatient units. Arch Intern Med 2011;171:645-655. 9. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742. 10. Morrison RS, Dietrich J, Ladwig S, et al. The CARE SPAN: palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff 2011;30:3454-3463. 11. Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med 2008;11:823-828. 12. Bruera E, Hui D. Conceptual models for integrating palliative care at cancer centers. J Palliat Med 2012;15: 1261-1269. 13. Fadul N, Elsayem A, Palmer JL, et al. Supportive versus palliative care: what’s in a name? Cancer 2009;115:2013-2021.
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14. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: Results of a randomized trial of in-home palliative care. J Am Geriatr Soc 2007;55:993-1000. 15. Center to Advance Palliative Care. IPAL-OP. Available at: http://www.capc.org/ipal/ipal-op. Accessed February 9, 2014. 16. Kerr K, Cassel JB: Quality and fiscal incentive alignment for community-based palliative care (August 2013). Coalition for Compassionate Care of California (CCCC). Available at: http:// coalitionccc.org/documents/CBPC_biz_case_Aug_2013.pdf. Accessed February 9, 2014. 17. Deitrick LM, Rockwell EH, Gratz N, et al. Delivering specialized palliative care in the community: a new role for nurse practitioners. Adv Nurs Sci 2011;34:E23-E36. 18. Carrns A. Deciding when to enter a palliative care unit. The New York Times. September 4, 2013. Available at: http:// www.nytimes.com/2013/09/04/your-money/deciding-when-toenter-a-palliative-care-unit.html?_r=0. 19. Laird-Sanders J. Management of an inpatient palliative care unit. In: Panke J, Coyne P, eds. Conversations in palliative care. Ed 3. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2011: pp. 313-318. 20. Cassel JB, Hager MA, Clark RR, et al. Concentrating hospital-wide deaths in a palliative care unit: the effect on place of death and system-wide mortality. J Palliat Med 2012;15:1356-1361. 21. Bakitas M, Bishop MF, Caron P, Stephens L. Developing successful models of cancer palliative care services. Semin Oncol Nurs 2010;26:266-284.
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22. Campbell M. Critical care units and the emergency department in conversations in palliative care. Ed 3. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2011: pp. 249-254. 23. Long J. Improving palliative care in nursing homes. In: Panke J, Coyne P, eds. Conversations in palliative care. Ed 3. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2011: pp. 255-264. 24. Lyckholm L. Improving care across settings. In: Panke J, Coyne P, eds. Conversations in palliative care. Ed 3. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2011: pp. 243-247. 25. Quill TE, Abernathy AP. Generalist plus specialist palliative care – creating a more sustainable model. N Engl J Med 2013;368:1173-1175. 26. End of Life Nursing Education Consortium (ELNEC) APRN curriculum. Available at: www.aacn.nche.edu/elnec. Accessed February 9, 2014. 27. Clinical Practice Guidelines for Quality Palliative Care. Ed 3. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2013. Available at: http://www.national consensusproject.org. Accessed February 9, 2014. 28. National Quality Forum. A national framework and preferred practices for palliative and hospice care quality. Washington, DC: NQF; 2012. Available at: http://www.qualityforum. org/Projects/Palliative_Care_and_End-of-Life_Care.aspx. Accessed February 25, 2014. 29. Advanced Certification for Palliative Care Programs. Available at: http://www.jointcommission.org/certification/ palliative_care.aspx. Accessed February 9, 2014.
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PALLIATIVE CARE DELIVERY MODELS CLAREEN WIENCEK AND PATRICK COYNE OBJECTIVES: To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed.
DATA SOURCES: Literature review. CONCLUSION: The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. IMPLICATIONS
FOR NURSING PRACTICE: Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient’s condition.
KEY WORDS: Palliative care, delivery models, generalist and specialist palliative care
Clareen Wiencek, RN, PhD, CNP, ACHPN: Nurse Manager, Thomas Palliative Care Unit; Program Director, The Center for Integrative Pain Management, Virginia Commonwealth University Health System, Massey Cancer Center, Richmond, VA. Patrick Coyne, RN, MSN, ACHPN, ACNS-BC, FAAN, FPCN: Clinical Director, Palliative Care Program, Virginia Commonwealth University Health System, Massey Cancer Center, Richmond, VA. Address correspondence to Clareen Wiencek, RN, PhD, CNP, ACHPN, VCU Massey Cancer Center, North Hospital, 4th floor, 1300 East Marshall St., PO Box 985934, Richmond, VA 23298. e-mail: cwiencek@ mcvh-vcu.edu Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.004
P
ALLIATIVE care programs across the United States have grown by a dramatic 157% in hospitals with more than 50 beds in the past decade.1 That growth is expected to continue.2 However, considerable geographic variation in access and in the services provided by these programs does exist.3 The mission, size, profit or non-profit status of the program and regulatory factors of the city or state can account for this variability. Despite this variability, there is strong evidence that palliative care improves quality of life and symptom management for patients with advanced cancers and other serious illnesses and results in cost savings or cost avoidance by reducing aggressive interventions with limited benefit.4-10 This article presents
228
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an overview of the features, advantages, and disadvantages of four delivery models for palliative care. These four models include ambulatory palliative care clinics, home-based palliative care, inpatient palliative care units (PCUs), and inpatient consult services. In addition, the role of the generalist and specialist provider in palliative care is discussed. This information is important for the oncology nurse and the advanced practice registered nurse (APRN) to incorporate into their practice to improve the quality of life for patients and families.
MODELS OF CARE Ambulatory Palliative Care Clinics Ambulatory-based palliative care clinics are a new model of care and one of the fastest growing segments given that acute inpatient care was the primary focus for the past two decades.1,2,11 The ideal features of ambulatory-based palliative care include the collaboration of interdisciplinary team members; physicians, nurses and APRNs, social workers, chaplains, psychologists, and physical and occupational therapists who focus on the assessment and management of symptoms that impact the patient’s quality of life and functional status. A recent study showed that an outpatient palliative care model decreased hospital admission, improved quality of life, and prolonged survival in patients with lung cancer.9 In addition, the ambulatory setting may be less threatening to patients and families, and providers are more likely to refer patients for ambulatory-based palliative care. Some evidence also suggests that the renaming of palliative care to ‘‘supportive care’’ increases the likelihood that oncologists will make referrals to palliative care.12,13 A palliative care approach in the ambulatory setting is appropriate for patients with advanced solid tumors (ie, lung, pancreas, colon, breast, brain and bladder; hematologic disorders such as leukemia or sickle cell disease); advanced heart failure and patients with ventricular assist devices; dementia; progressive neuro-generative disorders such as amyotrophic lateral sclerosis [ALS]; and end stage organ failure such as liver and renal failure. Another advantage of the ambulatory setting is the decrease in emergency department visits by facilitating direct admits to acute care from the clinic setting. Also, ambulatory clinics are an ideal setting for the nurse with expert palliative care and symptom management skills to provide
goal-directed and cost-effective care to patients with serious illness. Disadvantages of ambulatory palliative care may include limited physical space or facilities and limited access to all members of the interdisciplinary team and/or program resources. Home-Based Palliative Care Like the ambulatory clinic, home-based palliative care programs have a significant potential to decrease health care costs by reducing acute care hospitalizations. More importantly, palliative care in the home setting can serve a population of frail elderly or seriously ill for whom transportation to the hospital is a burden. There is evidence that home-based palliative care increases satisfaction with care, reduces health care costs, and reduces 30-day re-admissions.7,14-16 Features of this model of palliative care delivery include the provision of goal-directed care that keeps patients in their home or community setting, collaboration among interdisciplinary team members, team leadership by APRNs and collaborating physicians, and integration of family or caregivers. As mentioned previously, the advantage to home-based palliative care is bringing the care to the patient to avoid burdensome transportation to ambulatory clinics. Additional benefits include reduction in hospitalizations and cost of hospital stays, as demonstrated by the OACIS (Optimizing Advanced Complex Illness Support) program at LeHigh Valley Health System in Pennsylvania.17 Specialized palliative care delivered in the home by APRNs allows for optimal outcomes through coordination of care, medical management, psychosocial support, and education.17 Some of these patients are too healthy to qualify for hospice; therefore, home-based palliative care may be the preferred level of care consistent with their goals or preferences. Disadvantages may include limited access to the full interdisciplinary team or program resources more easily accessed within the walls of the affiliated health care system. Inpatient Palliative Care Units Most hospital-based palliative care is provided by consultation services as fewer than 10% of hospitals have designated PCUs.18 Despite this low prevalence, inpatient PCUs concentrate the specialized skills and knowledge of nurses and physicians, resulting in optimal care of complex palliative care patients. Further, these expert clinicians collaborate with all members of the
PALLIATIVE CARE DELIVERY MODELS
interdisciplinary team to address the multidimensional aspects of quality of life: physical, psychological, social, and spiritual. Patients appropriate for admission to a PCU can be very complex as the transition between goals of cure and aggressive therapy shift to goals of quality of life, symptom management, and comfort. These patients may require aggressive pain and symptom management with opioids and adjuvant medications, multiple IV therapies, complex respiratory care (including tracheostomies or high-flow oxygen systems), complex wound management, dialysis, chemotherapy, radiation therapy, and other acute treatments. Features of PCUs include the centralization of expert palliative care nurses, APRNs and physicians, a designated unit or cluster of beds, a mission that focuses on quality of life rather than diagnosis and cure, the simultaneous delivery of palliative care and acute care, a patient–familyfocused environment, and skilled care of patients at end of life and support of their loved ones. Casarett and colleagues8 reported greater satisfaction with inpatient palliative care than just palliative care consult services in Veterans Administration hospitals across the country. However, little is known about the state of inpatient PCUs in non-federal facilities. A Web-based survey to describe the state of inpatient re-admission is being conducted at Virginia Commonwealth University to address this gap in knowledge (personal communication, Clareen Wiencek, Virginia Commonwealth University Health System, February 9, 2014). Additional advantages of inpatient PCUs include the ability to perform certain procedures (such as lidocaine or ketamine infusions for intractable pain) and the provision of a distinct space for palliative care training, research, and philanthropic activities.19 Disadvantages may be the maintenance of an average daily census that meets budgetary requirements, off-service admissions, 24/7 coverage by qualified palliative care providers, and lack of national benchmarks for PCU staffing models. Also, conflict may result between patient-specific end-of-life goals and many of the regulatory standards to which all acute care units must comply with (ie, prevention of hospital-acquired pressure ulcers or catheterassociated urinary tract infections). Of note, some hospital administrators may be concerned that inpatient PCUs will increase hospital-wide mortality rates. Cassel and colleagues20 reported on mortality statistics over the 10 years of operation of their inpatient PCU. The PCU did not
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increase hospital mortality rates, which remained at 3% of discharges, but did impact the site of death with about one third of deaths occurring on the PCU.20 Inpatient Consultation Services Consultation services have historically been the most prevalent delivery model for palliative care in US hospitals. These are less resource intensive than inpatient PCUs because a designated space is not required and a consult service can be made up of just one team member. Features of consult services include a palliative care trained APRN or physician as the primary provider with access to or a defined relationship with other members of the interdisciplinary team such as palliative trained social workers, chaplains, psychologists, volunteers and therapists; use of standardized symptom assessment tools and management protocols; definition and development of the consultant relationship; defined scope of practice; identification of outcome metrics to measure impact of the service; and data collection and analytics. The advantages of inpatient consultation services include rapid, less resource-intensive implementation, less than 24/7 coverage (so less impact on staffing resources), more cost effective, less intense responsibility and therefore easier to maintain, and greater penetration across a healthcare system. Casarett and colleagues5 reported that palliative care consultations had a significant positive impact on families’ perception of the care their loved one received, higher scores for information, communication, and psychoemotional support, and a positive benefit from earlier palliative care consults in the course of the patient’s illness. Disadvantages may affect patient outcomes. For example, there may be a decrease in the management of pain and symptoms if the primary service does not follow the consult recommendations, reduced impact on system wide practice, reduced opportunity to standardize care of patients with serious or life-limiting illness, and lack of 24-hour coverage for palliative emergencies.6
PALLIATIVE NURSING ROLES Nurses’ roles within hospital-based palliative care may vary considerably. Nurses may act as the primary bedside nurse or as the APRN responsible for primary management of the patient and,
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in some settings, may even be the attending physician of record. Palliative care nurses can be found in almost any location within the acute care setting, including PCUs, intensive care units, the emergency department, rehabilitation units, pediatrics, as well as general medical–surgical units.21,22 Rehabilitation facilities or units may provide a unique setting for palliative care because many of these patients have multiple comorbidities and serious illness. An experienced clinician can provide goal-directed care that simultaneously improves quality of life and functional status. Long-term care, much like rehabilitation, requires expertise in symptom management and care coordination in the elderly and disabled population. Many hospice providers may find a beneficial role in working with long-term care facilities to meet the needs of patients and families and the staff.23 Prison units and psychiatric units in the acute care setting also offer nontraditional opportunities for palliative care nursing at the generalist and advanced practice level. Forensic care has often been neglected, but as the inmate population ages, the prevalence of persons with serious illnesses and multiple chronic conditions will increase. There is a growing movement to promote quality of life for this population and to meet staff as well as state and federal guidelines.24 Similar conditions apply to the psychiatric population, which may present with serious medical conditions that would be amenable to palliative care. Generalist and Specialist Palliative Care The aging population and the increasing prevalence of diseases associated with aging (eg, cancer, heart disease, and dementia) will fuel the demand for palliative care in the coming years. The fact that there will be many seriously ill patients with unmet palliative care needs for specialized teams to care for has led to the distinction between primary or secondary palliative care as provided by generalist and specialist clinicians.25 Evidence is mounting about the value of palliative care, as specialists are often consulted for many patients, regardless of complexity. However, some experts assert that many elements of palliative care can and should be provided by the primary service, regardless of the specialty focus and that, in some cases, adding another specialty team to a patient’s care may complicate communication and undermine existing relationships.25 Therefore, primary
palliative care as provided by the generalist is being differentiated from specialty palliative care. The key elements of primary palliative care include basic pain and symptom management, discussions about the patient’s goals of care, prognostication, advance care planning including discussion of the benefits and burdens of resuscitation, and proactive discussion and documentation of code status. Key elements of secondary palliative care include management of complex or refractory pain unresponsive to first- and second-line drugs, management of complex or refractory symptoms associated with advanced disease, management of complex and multidimensional depression, grief and existential distress, assistance with cases of futility, and expert facilitation of care in the case of conflict among the stakeholders (ie, patients, families, staff and provider teams).25 The generalist nurse who provides primary palliative care has the basic skills and knowledge to care for patients with chronic and serious illness, as well as those at end of life. The generalist nurse understands that palliative care begins at the time of diagnosis and can provide basic pain and symptom management. These nurses are skilled to introduce advance care planning and are familiar with community resources such as hospice. In addition, they understand the trajectory of common cancers, potential life-limiting conditions that require critical decisions, and know when a palliative care specialist is required for complex pain and symptom management. All oncology nurses should possess these generalist skills to meet the needs of patients with advanced cancer. The specialist nurse has expert knowledge and skills in pain and symptom management, pathophysiology of multiple chronic and serious illnesses, and is skilled in communication and advance care planning. The APRN with specialist skills has a unique role to positively impact patient- and system-level outcomes.26 The role of the APRN is to provide: Comprehensive pain and symptom management Expert pain and symptom management. Expert communication skills for exploration of quality of life, informed decision-making, goals of care discussions, and to conduct family meetings An organized plan of care for a patient’s dying in terms of setting, proactive pain and symptom
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management, and education for patient, family, and staff about the dying process Psychosocial and emotional support to the patient and family in the illness trajectory, providing presence in the journey Cultural and spiritual dimensions of care as specified by the patient and family Collaboration with members of the interdisciplinary team to meet the multidimensional aspects of quality of life for each patient and family
STANDARDS FOR PALLIATIVE CARE National standards for quality palliative care can guide providers, whether generalist or specialist, toward optimal outcomes. The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines 3rd edition outlines eight standards and the National Quality Forum developed a national framework and preferred practices for palliative and hospice care.27,28 Both standards are excellent resources available to generalists. Specialist palliative care providers should have a sound working knowledge of both sets of standards. The National Consensus Project for Quality Palliative Care (NCP) is a partnership of five national palliative care organizations: The American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, the Center to Advance Palliative Care, and the National Hospice and Palliative Care Organization. The NCP guidelines were developed to promote the growth and quality of palliative care programs, establish definitions of palliative care, set goals for access to quality palliative care, reduce variation, foster performance measurement and quality improvement, and promote continuity. The guidelines cover eight domains of palliative care: 1) structure and process; 2) physical aspects; 3) psychological and psychiatric aspects; 4) social aspects; 5) spiritual, religious, and existential aspects; 6) cultural aspects; 7) care of the patient at end of life; and 8) ethical and legal aspects. The third edition of the NCP guidelines reflects current practice and is consistent with the two previous editions, except that the title of domain 7, ‘‘care of the patient at end of life,’’ was changed to ‘‘care of the imminently dying patient.’’ The publication of the third edition reflects the maturation of the discipline, the changes in practice, the continued growth in
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the palliative care evidence base, and the impact of national seminal events (such as the health care reform mandated in the Patient Protection and Affordable Care Act). The precepts at the core of palliative care are found throughout the NCP guidelines, including patient–family-centered care, early introduction of palliative care at time of diagnosis, comprehensive palliative care across cares settings, interdisciplinary teamwork, expertise in clinical and communication skills, relief of suffering, and focus on quality.27 While publication of the NCP guidelines helped establish the definition and scope of palliative care, the National Quality Forum’s National Framework and Preferred Practices for Palliative and Hospice Care Quality (NQF Preferred Practices) was also an essential step in the acceptance and implementation of those guidelines by the larger healthcare community.28 The NQF is a nonprofit public–private partnership focused on improving the quality of health care through voluntary consensus standards. The 38 NQF Preferred Practices are based on the NCP guidelines. It also recommends a framework for creating a quality measurement and reporting system that may be used to support improved reimbursement for palliative care services. Together, the NCP guidelines and the NQF Preferred Practices set the performance standards for new and existing palliative care programs.27,28 Quality initiatives in palliative care were further strengthened in 2011 when The Joint Commission (TJC) launched advanced certification for palliative care.29 This disease-specific certification recognizes hospital inpatient palliative care programs that demonstrate exceptional patient- and family-centered care according to over 40 standards in program management, provision of care, information management, and performance improvement. TJC used the NCP guidelines to develop this certification program. This 2-year renewable certification is recognition of the importance of palliative care to quality health care outcomes and is recognized as a major landmark for the specialty. There are several reasons why these national guidelines and TJC certification are indispensable to the professional practice of palliative care nurses and APRNs. First, the guidelines establish standards for program development and for clinical outcomes and serve as a nationally accepted benchmark of quality. Both guidelines set the standard that palliative care teams must be
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interdisciplinary and that patients and families must have access to palliative care expertise 24 hours per day, 7 days per week. At the level of patient outcomes, the NQF Preferred Practices advocate for screening and assessment of symptoms with standardized scales,28 and the NCP guidelines call for prompt response to psychological symptoms and regular documentation of response to treatment.27 Second, the NQF Preferred Practices and NCP guidelines set standards for educational preparation for nurses, APRNs, and members of the palliative care team.27,28 APRNs are ideally suited to take a leadership role in providing experiences for all team members in the range of settings where patients receive care. An additional benefit to the use of the NCP guidelines and NQF Preferred Practices and attainment of TJC advanced certification for palliative care is to conduct meaningful performance improvement activities using these national benchmarks. Nurses and APRNs as leaders on their teams can use individual standards to form the core of performance improvement measures and plans, thereby, elevating the quality of the structure, processes, and outcomes of the program.
CONCLUSION Palliative care programs across the US have experienced incredible growth in the past 10 to 15 years, and that growth is projected to continue. Significant geographic variability exists
not only in access to such programs but also in program components. The four types of palliative care programs are inpatient consultation services, the most prevalent; inpatient palliative care units (minimal prevalence in the hospital setting); ambulatory clinics; and the newest, home-based palliative care. While all four exist along a continuum of service delivery, ambulatory and homebased have the greatest potential to reduce the soaring costs of hospital-based care. All four have the potential to improve quality of life, improve pain and symptom management, and deliver goal-directed care to patients with cancer and other serious illnesses. This article addressed the features, advantages, and disadvantages of each model of palliative care programs. As the population ages, the need for palliative care will increase, necessitating for generalists, in all disciplines, to provide primary palliative care. Secondary palliative care should be provided by specialists with advanced skills and knowledge in the management of complex pain and symptom syndromes associated with serious illness and with advanced consultative and communication skills to help patients and their families and the providers caring for them negotiate the complex transition from goals of cure and diagnosis to quality of life and comfort. National standards are available to guide this process and ensure the delivery of quality palliative care. Optimal patient- and system-level outcomes will result from the use of these delivery models.
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