Definition and Description
Palliative nursing embraces and reflects a holistic philosophy of care provided to patients with serious or life-threatening illness in diverse health settings, across the lifespan. Palliative nursing is an evidence-based nursing practice that includes “the assessment, diagnosis, and treatment of human responses to actual or potential life-limiting illnesses within the context of a dynamic caring relationship with the patient and family, in order to reduce or relieve suffering and optimize health” (
Lynch, Dahlin, Hultman, & Coakley, 2011).
Health is defined as the “wholeness, integrity, quality of life, and function of the person” (
Lynch, Dahlin, Hultman, & Coakley, 2011).
Palliative nursing focuses on care delivery to individual patients and families, patients within specific disease populations, and palliative care issues within health care and society as a whole entity. Inherent in palliative nursing are the processes of evaluation, treatment, and management within the eight domains of palliative care outlined in the National Consensus Project: 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 at the End of Life; and Domain 8. Ethical and Legal Aspects of Care. This is accomplished through evidence-based physical, emotional, psychosocial, and spiritual or existential care, to individuals and families experiencing serious or life-threatening illness, within the matrix of an interdisciplinary care team that includes the patient and family. By eliciting patients’ values, goals, and preferences of care, and advocating for them throughout the illness trajectory
(
Lynch, Dahlin, Hultman, & Coakley, 2011), hospice and palliative nurses lead the comprehensive interdisciplinary collaborative care of the patient.
The essence of palliative nursing is honoring the individual patient in her or his journey; attending to psychological responses to the end of life, social and cultural factors, and spiritual aspects of care (NCP, 2013). From diagnosis to death, hospice and palliative nurses accompany the patient and her or his family with a goal of relieving suffering and promoting quality of life. The palliative nursing process includes holistic assessment of the patient and family, the offer or provision of information to allow more informed decision-making, meticulous pain and symptom management, determination and optimization of functional status, and support of coping patterns. “The [hospice and palliative] nurse’s individual relationship with the patient and family is seen as a crucial [component of the care provided]. This relationship, together with knowledge and skills [to promote quality of life], is the essence of palliative care nursing and sets it apart from other areas of nursing practice” (
Coyle, 2010, p. 5).
Across the spectrum of health settings, palliative nursing is expanding to respond to the dynamic nature of health care. Whereas historically only individuals with acute, serious, and life-threatening illnesses (e.g., severe trauma, acute stroke, and leukemia) with poor prognoses and poor quality of life received palliative care, palliative care has moved beyond the last months of life. Now, serious or life-threatening illness encompasses populations of patients of all ages within a broad and more expansive range of diagnostic categories, who are living with a persistent or recurring medical condition that adversely affects their daily functioning or will predictably reduce life expectancy (NCP, 2013, p. 8). Therefore, appropriate patients include those with serious diagnoses such as peripheral vascular disease, malignancies, renal or liver failure, devastating strokes, advanced heart or lung disease, frailty, neurodegenerative disorders, and the various forms of dementia; individuals living with chronic and life-threatening injuries from trauma; individuals with congenital injuries or conditions dependent on life-sustaining treatments and/or assistive care; and individuals with developmental and intellectual disabilities who develop serious or life-threatening illness (NCP, 2013).
Palliative nursing is provided for patients and families in a variety of locations, including inpatient, home, or residential hospice; acute care hospitals or palliative care units; long-term care facilities; rehabilitation facilities; home; ambulatory or outpatient palliative care primary care or specialty clinics; veterans’ facilities; correctional facilities; homeless shelters; and mental health settings. Hospice and palliative nurses serve in a variety of roles including acting
as expert clinicians, educators, researchers, administrators, consultants, case managers, program developers/coordinators, and/or policy-makers. Moreover, hospice and palliative nurses provide consistent responsibility for the roundtheclock care of palliative patients in these diverse settings. “Collaboration with other disciplines, within palliative care and in [the] broader context of the patient’s care, is an essential skill for palliative nurses to obtain a more comprehensive view of the patient’s issues and circumstance, explore options for care, and to advocate for patient’s values, goals, and preferences” (
Lynch, Dahlin, Hultman, & Coakley, 2011, p. 108). Hospice and palliative nurses work side-by-side with patients and families, physicians, social workers, chaplains, and other colleagues to determine each patient’s unique goals, which are based on individual physical, psychosocial, emotional, and spiritual needs and factors.
A fundamental practice focus for palliative nursing is the management of clinical plans, not only for patients and families, but also for their interdisciplinary colleagues. The plan is established collaboratively between the patient and family (both as drivers of care) and the nurse in conjunction with the physician and other members of the interdisciplinary team. However, hospice and palliative nurses may work in roles in which they develop other education, policy initiatives, and quality plans on a local, regional, and national level. These plans include the assessment of community needs, ensuring high-quality palliative care in areas such as advance care planning, hospice and palliative services, pain and symptom management, and caring for patients with serious or life-threatening illness.
History and Evolution of Palliative Nursing
Palliative nursing evolved from hospice as the hospice philosophy moved into hospitals and academic settings. The concept of hospice antedates AD 475; the word itself derives from the Latin word
hospes, meaning both host and guest. During the early Greek and Roman empires, self-sustained communities developed where ill, weary, homeless, and dying persons received care. This care of the whole person (i.e., soul, mind, and spirit) was provided throughout the Middle Ages by religious orders (e.g., monasteries, hospitaliers of the Crusades). In the 1800s, hospice evolved into care of the sick and incurables. As the term
hospice became synonymous with care of the terminally ill, formal hospices were established: the Sisters of Charity founded Our Lady’s Hospice in Dublin (1879) and St. Joseph’s Hospice in London (1905). Concurrently, Florence Nightingale built the foundation of nursing, with its
roots stemming from end-of-life caring for soldiers in the Crimean War (
Berry, Volker, & Watson, 2010;
Dahlin & Lynch, 2013).
Nurse leaders have been at the core of hospice development. Dame Cicely Saunders, a nurse, social worker, and physician, refined the concepts of modern hospice care in 1967 when she founded St. Christopher’s Hospice in London, England. Dr. Florence Wald, Dean of the Yale School of Nursing, launched the American hospice movement through the development of a hospice nursing curriculum and the 1971 founding of the first hospice in the United States— Connecticut Hospice. The Tax Equity and Fiscal Responsibility Act of 1982 created the Medicare hospice benefit, which established formal recognition of hospice and its presence in United States health care (
Berry, Volker, & Watson, 2010;
Dahlin & Lynch, 2013). In 1987, the Hospice Nurses Association was formed to ensure quality hospice nursing that would allow hospice nursing to flourish.
In 1995, the first scope and standards for hospice nursing were developed. The landmark findings of SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) were published, highlighting high levels of pain experienced by seriously ill and dying patients, disrespect of patient preferences at end of life, and poor communication about end of life (
SUPPORT Principal Investigators, 1995). Subsequently, the Robert Wood Johnson Foundation (RWJF) responded to the “overriding need to change the kind of care dying Americans receive” with financial support and commitment to end-of-life initiatives (
Last Acts Task Force, 1997). This was followed by the Institute of Medicine report,
Approaching Death: Improving Care at End of Life, which described the necessary changes for end-of-life care (
Institute of Medicine [IOM], 1997).
Since then, significant nursing events have led to the establishment of the specialty of palliative nursing. Research revealed insufficient palliative care content in undergraduate nursing education. This led to the development of nursing practice competencies and nursing education on communication, ethics, and the principles of pain and symptom management (
Ferrell, Virani, & Grant, 1999). The American Association of Colleges of Nursing (AACN), supported by RWJF, convened a round table of expert nurses to discuss and initiate educational change related to palliative care. These nurse experts developed the document
Peaceful Death, which outlined baccalaureate competencies to be included in education (
American Association of Colleges of Nursing [AACN], 1997). Other educational programs included the development of the End-of-Life Nursing Education Consortium (ELNEC)—a joint project between
AACN and the City of Hope National Medical Center. The number of nurses attending the variety of ELNEC offerings continues to increase significantly.
In 2001, nursing leaders from academia, clinical practice, and research held a national leadership meeting to discuss the vital role of advanced practice registered nurses in palliative care, and disseminated a white paper, entitled
Promoting Excellence in End-of-Life Care: A Position Statement from American Nursing Leaders (
Promoting Excellence in End-of-Life Care, 2002). HPNA published two position statements on the role of the nurse:
Value of the Professional Nurse in End-of-Life Care (HPNA, 2004) and
Value of Advanced Practice Nurse in Palliative Care (HPNA, 2007), which endorsed the Promoting Excellence in End-of-Life Care white paper and emphasized the importance of the role of nursing in palliative care. To reflect the practice of nurses with baccalaureate and graduate education as delineated in the Peaceful Death Competencies (AACN, 1997), HPNA produced the second edition of
Scope and Standards of Hospice and Palliative Nursing.
In 2003, the American Nurses Association (ANA) formulated a position statement regarding the promotion of comfort and relief of pain of dying patients (ANA, 2003). This position statement was superseded by Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life (ANA, 2010c), which reinforces the nurse’s obligation to promote comfort and to ensure aggressive efforts to relieve pain and suffering. In 2012, ANA released the position statement Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions, which stated that “[n]urses must advocate for and play an active role in initiating discussions about DNR with patients, families, and members of the health care team” (ANA, 2012).
In 2004, the National Consensus Project for Quality Palliative Care (NCP) published Clinical Practice Guidelines for Quality Palliative Care (subsequently revised in 2009 and 2013). Designed to promote quality, continuity, and consistent high standards, the guidelines state expectations for education, certification, and ongoing education for members of interdisciplinary hospice and palliative teams, of which registered nurses (RNs) and advanced practice registered nurses (APRNs) are prominent members (NCP, 2013). In 2006, the guidelines served as the foundation of the National Quality Forum’s A National Framework and Preferred Practices for Palliative and Hospice Care: A Consensus Report (2006), and in 2011 became the underlying principles of The Joint Commission’s Advanced Certification in Palliative Care. The 2007 Hospice and Palliative Nursing: Scope and Standards of Practice reflected the evolution of palliative care (HPNA & ANA, 2007; ANA, 2010a).
Significant events of the past few years include the recognition of palliative care as a medical specialty, the inclusion of palliative care in healthcare reform, a focus on palliative care as a measurement of quality in national initiatives, and nursing’s participation in promoting quality health care. Of particular importance is the 2010 IOM Future of Nursing report (IOM, 2010), which identifies rich areas for palliative nursing to grow: the promotion of further education for generalist hospice and palliative nurses to become advanced practice registered nurses; the support of advanced practice registered nurses to practice to the fullest extent to promote universal access to palliative care; and palliative nursing’s participation in healthcare quality measures to improve end-of-life care. This revision of Palliative Nursing: Scope and Standards of Practice reflects the current state of palliative care and the role of hospice and palliative nurses.
