National Consensus Project Clinical Practice Guidelines for Quality Palliative Care: Implications for Oncology Nursing

The goal of the 4^th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP Guidelines) is to improve access to quality palliative care for all people with serious illnesses regardless of setting, diagnosis, prognosis, or age. The NCP Guidelines are intended to encourage and guide health-care organizations and clinicians (including nonpalliative care specialists) across the care continuum to integrate palliative care principles and best practices into routine assessment and care of all seriously ill patients. On an international level, we recognize that nursing practice is very different in some respects, but we hope that these guidelines will prove helpful in the practice of palliative care for the seriously ill worldwide.

Introduction

The 4^th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP) Guidelines expands upon the content in the previous edition, specifically focusing on the two key concepts.[1,2,3] First, palliative care is inclusive of all people with serious illnesses, regardless of setting, diagnosis, prognosis, or age. Second, timely consideration of palliative care is the responsibility of all clinicians and disciplines caring for the seriously ill including primary care practices; specialist care practices (e.g., oncology or neurology); hospitalists; nursing home staff; as well as palliative care specialist teams such as hospice-, hospital-, and community-based palliative care teams.

The following five key themes were added to each domain:

• The elements of a comprehensive assessment

• Family caregiver assessment, support, and education are referenced in numerous domains

• The essential role of care coordination, especially during care transitions

• Culturally inclusive care is referenced in all the domains and expanded in the cultural aspects of care domain

• Communication (within the palliative care team and with patients and families, other clinicians, and community resource providers) is a prerequisite for the delivery of quality care for the seriously ill.

Settings of Care

As palliative care is not setting specific, palliative care principles and practices are applicable throughout the course of a serious illness, across and between care settings, thereby improving continuity and coordination of care, decreasing expenses related to duplicative or nonbeneficial interventions or waste.

While hospital-based palliative care and hospice are widely available in the United States, access to palliative care in other settings is often unavailable. Reliable access to palliative care in community-based settings is essential to the delivery of expert care and pain and symptom management, as well as psychological, practical, and social support, helping patients and families remain safely in their care setting of choice.

New community-based palliative care models are meeting the needs of those with a serious illness who are neither hospitalized nor hospice eligible, through the provision of care in patient homes, physician offices/clinics, cancer centers, dialysis units, assisted and long-term care facilities, and other community settings. Community-based palliative care services are delivered by clinicians in primary care and specialty care practices (such as oncologists), as well as home-based medical practices, private companies, home health agencies, hospices, and health systems.

Using the National Consensus Project Guidelines

The NCP Guidelines delineate palliative care principles that all clinicians should integrate into the care of seriously ill patients and their families. New, emerging, and established specialist palliative care teams can use the NCP Guidelines to expand services to new patient populations or care settings, form new partnerships, and improve the care provided to patients and families. The NCP Guidelines can be utilized to design new palliative care programs, develop and refine educational programs, measure the effectiveness of and improve care, develop payer contracts, shape research, and prepare for health-care accreditation.

Guidelines for Quality Palliative Care

Domain 1: Structure and processes of care

Palliative care principles and practices can be integrated into any health-care setting, delivered by all clinicians, and supported by palliative care specialists who are part of an interdisciplinary team (IDT) with the professional qualifications, education, training, and support needed to deliver optimal patient- and family-centered care. Palliative care begins with a comprehensive assessment and emphasizes patient and family engagement, communication, care coordination, and continuity of care across health-care settings.

Domain 2: Physical aspects of care

Physical care of seriously ill patients begins with an understanding of patient goals in the context of their physical, functional, emotional, and spiritual well-being. The assessment and care plan focuses on relieving symptoms and improving or maintaining the functional status and quality of life. The management of symptoms encompasses pharmacological, nonpharmacological, interventional, behavioral, and complementary treatments. Physical care, acute and chronic symptom management across all care settings, is accomplished through communication, collaboration, and coordination between all professionals involved in the patients’ care, including primary and specialty care providers.

Domain 3: Psychological and psychiatric aspects of care

The palliative care IDT systematically addresses the psychological and psychiatric aspects of care in the context of serious illnesses. IDTs conduct comprehensive developmentally and culturally sensitive mental status screenings of seriously ill patients. The social worker facilitates mental health assessment and treatment in all care settings, either directly, in consultation, or through referral to specialist-level psychological and/or psychiatric care. The IDT communicates to the patient and family the implications of psychological and psychiatric aspects of care in establishing the goals of care and developing a treatment plan, addressing family conflict, delivering grief support and resources from diagnosis onward, and providing referrals for patients or family members requiring additional support.

Domain 4: Social aspects of care

Social determinants of health or “social factors” have a strong, sometimes overriding, influence on patients with a serious illness. Palliative care addresses environmental and social factors that affect patient and family functioning and quality of life. The palliative care IDT, with the patient and family, identifies and supports their strengths and addresses the areas of need. The IDT includes a professional social worker to maximize patient functional capacity and achieve patient and family goals.

Domain 5: Spiritual, religious, and existential aspects of care

Spirituality is recognized as a fundamental aspect of compassionate, patient- and family-centered palliative care. It is a dynamic and intrinsic aspect of humanity through which individuals seek meaning, purpose, and transcendence and experience relationship to self, family, others, community, society, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices. The palliative care IDT serves each patient and family in a manner that respects spiritual beliefs and practices and is also respectful when patients and families decline to discuss their beliefs or accept spiritual support.

Domain 6: Cultural aspects of care

Assessing and respecting values, beliefs, and traditions related to health; illness; family caregiver roles; and decision-making are the first step in providing culturally sensitive palliative care. Palliative care IDT members continually expand awareness of their own biases and perceptions about race, ethnicity, gender identity and gender expression, sexual orientation, immigration and refugee status, social class, religion, spirituality, physical appearance, and abilities. Information gathered through a comprehensive assessment is used to develop a care plan that incorporates culturally sensitive resources and strategies to meet patients’ and family members’ needs. Respectful acknowledgment of and culturally sensitive support for patient and family grieving practices are provided.

Domain 7: Care of the patient nearing the end of life

This domain highlights the care of the patient and family near the end of life, with particular emphasis on the days leading up to and just after the patient's death. The meticulous and comprehensive assessment and management of pain and other physical symptoms, and social, spiritual, psychological, and cultural aspects of care, are critically important as the patient nears death. It is essential that the IDT ensures reliable access and attention in the days before death and provides developmentally appropriate education to the patient, family, and/or other caregivers about what to expect near and immediately following the patient's death.

The interdisciplinary model of hospice care is recognized conceptually and philosophically as the best care for patients nearing the end of life. Discussion of hospice as a support option should be introduced early so that patients and families can understand eligibility and the benefits and limitations of this care model. Early access to hospice support should be facilitated whenever possible to optimize patient and family care outcomes. Palliative care teams, hospice providers, and other health-care organizations must work together to find innovative, sustainable, and supportive care solutions for all patients and families in their final months of life.

Domain 8: Ethical and legal aspects of care

The palliative care IDT applies ethical principles to the care of patients with serious illness, including honoring patient preferences as well as decisions made by legal proxies or surrogate decision makers. In all cases, surrogates’ obligations are to represent the patient's preferences or best interests. Familiarity with local and state laws is needed relating to advance care planning, decisions regarding life-sustaining treatments, and evolving treatments with legal ramifications (e.g., medical marijuana), especially when caring for vulnerable populations, such as minors, prisoners, or those with developmental disability or psychiatric illness.

Conclusion

The NCP Guidelines, 4^th edition, will advance palliative care. The complete NCP guidelines, detailed criteria, implications, bibliography, and practice examples can be found at www.nationalcoalitionhpc.org/ncp.