Betty R. Ferrell, PhD, MA, FAAN, FPCN
Martha L. Twaddle, MD, FACP, FAAHPM, HMDC
As reported by Betty R. Ferrell, PhD, MA, FAAN, FPCN, of the Division of Nursing Research and Education, City of Hope Medical Center, Duarte, California, and colleagues in the Journal of Palliative Medicine, the National Consensus Project (NCP) of the National Coalition for Hospice and Palliative Care, has released the 4th edition of Clinical Practice Guidelines for Quality Palliative Care.1,2 The new edition includes information drawn from a systematic review of evidence published as of April 2018 by a panel of technical experts. The NCP steering committee was co-chaired by Dr. Ferrell and Martha L. Twaddle, MD, FACP, FAAHPM, HMDC, of the Department of Hospice and Palliative Medicine, Northwestern Feinberg School of Medicine, Chicago.
As stated by the authors, the goal of the NCP guidelines is to “improve access to quality palliative care for all people with serious illness regardless of setting, diagnosis, prognosis, or age…. The guidelines are intended to encourage and guide health-care organizations and clinicians across the care continuum to integrate palliative care principles and best practices into their routine assessment and care of all seriously ill patients and their family caregivers.”
The NCP guidelines are structured by domains, as adapted below. Each of the eight domains contains specific guidelines (not reproduced here) for implementing domain principles, including recommendations on screening and assessment, treatment, ongoing care, communication and language, bereavement, and legal considerations.
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
Palliative care begins with a comprehensive assessment and emphasizes patient and family engagement, communication, care coordination, and continuity of care across health-care settings.— Betty R. Ferrell, PhD, MA, FAAN, FPCN, and colleagues
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care specialists who are part of an interdisciplinary team 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 the patient’s goals in the context of their physical, functional, emotional, and spiritual well-being. The assessment and care plan focus on relieving symptoms and improving or maintaining functional status and quality of life.
The management of symptoms encompasses pharmacologic, nonpharmacologic, interventional, behavioral, and complementary treatments. Physical care, acute and chronic symptom management across all care settings, is accomplished through communication, collaboration, and coordination among all professionals involved in the patients’ care, including primary and specialty care providers.
Domain 3: Psychological and Psychiatric Aspects of Care
The palliativecare interdisciplinary team systematically addresses psychological and psychiatric aspects of care in the context of serious illness. Interdisciplinary teams 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 interdisciplinary team communicates to the patient and family the implications of psychological and psychiatric aspects of care in establishing goals of care and developing a treatment plan, addressing family conflict, delivering grief support and resources from the point of diagnosis onward, and providing referrals for patients or family members who require additional support.
Domain 4: Social Aspects of Care
Social determinants of health, referred to as “social factors” in the guidelines, have a strong and sometimes overriding influence on patients with a serious illness. Palliative care addresses environmental and social factors that affect patient and family functioning and
The palliative care interdisciplinary team partners with the patient and family to identify and support their strengths and to address areas of need.— Betty R. Ferrell, PhD, MA, FAAN, FPCN, and colleagues
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quality of life. The palliative care interdisciplinary team partners with the patient and family to identify and support their strengths and to address areas of need. The interdisciplinary team 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 interdisciplinary team serves patients and families in a manner that respects their 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 andrespecting values, beliefs, and traditions related to health, illness, family caregiver roles, and decision-making constitute the first step in providing culturally sensitive palliative care. Palliative care interdisciplinary team 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.
The interdisciplinary model of hospice care is recognized conceptually and philosophically as the best care for patients nearing the end of life.— Betty R. Ferrell, PhD, MA, FAAN, FPCN, and colleagues
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Information gathered through a comprehensive assessment is used to develop a care plan that incorporates culturally sensitive resources and strategies to meet the needs of patients and family members. 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 provided to the patient and family near the end of life, with a particular emphasis on the days leading up to and just after the death of the patient. The meticulous and comprehensive assessment and management of pain and other physical symptoms, as well as social, spiritual, psychological, and cultural aspects of care, are critically important as the patient nears death. It is essential that the interdisciplinary team 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 death, as well as 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 regarding hospice as an option for support should be introduced early so that patients and families can understand eligibility and the benefits and limitations of accessing this care model. Early access to hospice support should be facilitated whenever possible to optimize care outcomes for the patient and the family. Palliative care teams, hospice providers, and other health-care organizations must work together to find innovative, sustainable 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 interdisciplinary team 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. It is important to note that 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 (eg, medical marijuana), especially when caring for vulnerable populations, such as minors, prisoners, or those with developmental disability or psychiatric illness.
Development of the NCP Clinical Practice Guidelines for Quality Palliative Care, 4th edition, was funded by the Gordon and Betty Moore Foundation with additional support for the systematic review by the Gordon and Betty Moore Foundation, Gary and Mary West Foundation, The John A. Hartford Foundation, and the Stupski Foundation. ■
DISCLOSURE: Dr. Ferrell reported no conflicts of interest.
REFERENCES
2. National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, Virginia; National Coalition for Hospice and Palliative Care; 2018. Available at www.nationalcoalitionhpc.org/ncp. Accessed November 15, 2018.
