The (nursing) profession taught me so many lessons about the fragility of life, the importance of being mindful about the way you live, the need for appreciation of life’s beauty and bounty while you are still healthy, and perhaps, most importantly, the worth of “unconditional positive regard,” which is the way we were taught to approach our patients. Elizabeth Berg, RN.
The nursing specialty of palliative care has recently emerged. Its goals are to improve quality of life and symptom management, caring for the physical, emotional, and spiritual needs throughout the trajectory of illness. Nursing has provided leadership in the development of this specialty by defining the scope and standards of palliative nursing practice at both the generalist and advanced practice levels. The standards of palliative nursing practice can be applied to any care setting; they can be integrated into general patient care or used to guide specialist palliative care practice. Hospice programs currently provide the best example of structured, regulated palliative care. Future trends include the continued development and standardization of palliative care in inpatient and ambulatory care settings. These trends will likely drive the need for more advanced practice palliative care nurses (APNs) and improve palliative care for all.
Nursing Contributions
Dame Cicely Saunders, who started her career as a nurse, was the founder of the modern concept of hospice care; she opened St. Christopher’s Hospice in Great Britain in 1967. She was instrumental in developing the core principles that provide the basis of all palliative care today. Her interest in care of the dying began when she was a volunteer nurse. Dame Cicely subsequently obtained a degree in social work and went on to become a physician before directing St. Christopher’s Hospice. Florence Wald, a nurse, brought hospice care to the United States in 1974; she founded Connecticut Hospice in Branford, Connecticut, the first US hospice. A former Dean of the Yale University School of Nursing in New Haven, Connecticut, Florence Wald heard Dame Cicely lecture at Yale in 1963 and was so inspired by her work that she subsequently visited St. Christopher’s to learn about hospice care. Connecticut Hospice was the first hospice to have a building designed specifically for hospice care, and it remains unique in other ways. It is licensed as a hospital and is identified primarily as an inpatient facility (as is St. Christopher’s), although Connecticut Hospice is integrated with home care services that are provided throughout Connecticut. By contrast, most US hospices use a home care model and contract with inpatient facilities for services when patients cannot be cared for at home.
In 1984, the (then) Joint Commission on Accreditation of Hospitals developed its first standards for hospice programs. Anne Rooney, RN, MS, MPH, was instrumental in defining these hospice accreditation standards, and was one of the first Joint Commission hospice surveyors. She is a former director of the Joint Commission’s Home Care and Hospice Accreditation Program. In 1992, many of the original hospice standards were incorporated into the (renamed) Joint Commission on Accreditation of Healthcare Organizations (JCAHO) standards and applied to the care of dying patients in hospitals. Since that time, the (now named) Joint Commission has continued to incorporate palliative care standards into all patient care populations and settings. The best example of this is the Joint Commission standard asserting that pain management is a right for all patients.
Madolon O’Rawe Amenta, PhD, RN, was another influential nurse in hospice development. She founded the Pennsylvania Hospice Network and was a founding member of the Hospice Nurses Association (HNA) in 1986. That same year, she co-authored one of the first nursing textbooks on end-of-life care, Nursing Care of the Terminally Ill, with Nancy Bohnet. Dr. Amenta served as the first HNA Executive Director from 1993 to 1997. The HNA changed its name to the Hospice and Palliative Nurses Association (HPNA) in 1997.
In May, 2004, the National Consensus Project for Quality Palliative Care (NCP), a collaboration of five major US palliative care organizations, published its comprehensive guidelines to promote consistent, high-quality palliative care by establishing a consensus on clinical practice guidelines. Five organizations participated in the development of these evidence-based palliative care guidelines: the HPNA, the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, Last Acts/Partnership for Caring, and the National Hospice and Palliative Care Organization. The NCP provides this definition of palliative care: The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such it can be delivered concurrently with life-prolonging care or as the main focus of care.
More than a dozen nursing organizations have endorsed the NCP guidelines, as well as the American Alliance of Cancer Pain Initiatives and the Society of Critical Medicine. The second edition was published in 2007.
Defining a Specialty
According to the NCP, “Specialist Palliative Care providers are professionals whose work is largely or entirely involved with palliative care and who have received appropriate training and credentialing in the field.” The American Board of Nursing Specialties (ABNS), the only accrediting body dedicated specifically to nursing certification, accredits specialty nursing certification programs if the organization has demonstrated compliance with rigorous standards for certification. The ABNS considers “specialty nursing certification THE standard by which the public recognizes quality nursing care.” Of the eighteen ABNS accreditation standards, the first ABNS Standard 1 requires a definition and written scope, describing the nursing specialty, along with evidence of a distinct body of scientific knowledge that is unique and distinct from that of basic nursing. Hospice and Palliative Nursing has been approved by ABNS as a distinct nursing specialty.
In 2000, the HPNA published their statement on the scope, standards of care, and standards of practice of the specialty of hospice and palliative nursing.
Scope
The defined scope of the specialty of hospice and palliative nursing includes the following:
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Pain and symptom management
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End-stage disease process care
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Psychosocial and spiritual care of patient and family
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Culture-sensitive care of patient and family
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Interdisciplinary collaborative practice
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Loss and grief care
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Patient education and advocacy
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Bereavement care
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Ethical and legal considerations
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Communication skills
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Awareness of community resources
Standards
The Standards of Hospice and Palliative Nursing Practice are authoritative statements that describe the responsibilities for which practitioners are accountable. They are divided into the Standards of Professional Performance and the Standards of Care.
The Standards of Professional Performance, which reflect the consistency of language and structure recommended by the American Nurses Association 1998 Standards of Clinical Practice are as follows:
Standard I: Quality of Care. The hospice and palliative nurse systematically evaluates the quality and effectiveness of nursing practice.
Standard II: Performance Appraisal. The hospice and palliative nurse evaluates own nursing practice in relation to professional practice standards and relevant standards and regulations.
Standard III: Education. The hospice and palliative nurse acquires and maintains current knowledge and competency in hospice and palliative nursing practice.
Standard IV: Collegiality. The hospice and palliative nurse contributes to the professional development of peers and other health care professionals as colleagues.
Standard V: Ethics. The hospice and palliative nurse’s decisions and actions on behalf of patient and family are determined in an ethical manner.
Standard VI: Collaboration. This use of interdisciplinary team and other resources includes collaborating with patients and family in developing the care plan and supporting team decisions.
Standard VII: Research. The hospice and palliative nurse uses research findings in practice, identifies research issues, and supports research studies.
Standard VIII: Resource utilization. The hospice and palliative nurse considers factors related to safety, effectiveness and cost in planning and delivering patient and family care.
Types of Care Activity
Beyond the standards of professional performance, the Standards of Care describe palliative nursing care activities for all patients and their families. The processes encompass all significant actions taken by nurses when providing care, and they form the foundation for clinical decision making. They are described below.
Standard I: Assessment—The Hospice and Palliative Nurse Collects Patient and Family Health Data
Whether assessing a newly admitted hospital patient with severe pain, caring for someone who is actively dying, performing intake at home for hospice services, or responding to a palliative care consultation, a nursing assessment is often the initial act of care in the nursing specialty of palliative care. In every circumstance, the patient’s evaluation needs to be holistic and should identify current problems that encompass the physical, emotional, social, and spiritual care realms. It is essential that patient and family care goals be identified and communicated to the health care team. Problems need to be responded to according to the patient’s identified priorities (or the family’s priorities if the patient is unable to communicate). When palliative care is provided by a specialist in a consultative role, it is critical for the palliative care nurse to communicate with the patient’s current care team, respond to the initial consultation, elicit their concerns, and provide a model of excellent team work.
Caring for patients with end-stage disease and for those who are actively dying entails the challenge of ensuring that the assessment itself does not pose a burden on patients or significant others. Because a thorough physical assessment may sometimes exacerbate symptoms, determining the cause of a symptom may not be realistically possible. Empirical symptom management, titrated to patient relief, may be the best option, along with intense intervention for immediate physical, emotional, and spiritual needs and immediate needs of the family. For actively dying patients, family support needs related to grieving must be assessed and should particularly identify those at risk for complicated grieving or those with a history of poor coping skills.
Standard II: Diagnosis—The Hospice and Palliative Nurse Analyzes the Assessment Data in Determining Diagnosis
Diagnoses are derived by the analysis of multidimensional assessment data and the identification of problems that may be resolved, diminished, or prevented. Whenever possible, diagnoses are validated with the patient, family, and other interdisciplinary team members and health care providers, and they should be consistently communicated to other team members.
Standard III: Outcome Identification—The Hospice and Palliative Nurse Develops Expected Outcomes
Realistic, derived outcomes are mutually formulated with the patient, family, and (as appropriate) other members of the interdisciplinary team. Expected outcomes should be attainable, given the prognosis of the patient; they can provide direction for continuity of care across all care settings and from the time of admission through bereavement. When possible, expected outcomes are documented as measurable goals.
Standard IV: Planning—The Hospice and Palliative Nurse Develops a Plan of Care that Prescribes Interventions to Attain Expected Outcomes
Care is planned in collaboration with the patient, family, and other interdisciplinary team members within the context of patient and family goals of care. It is individualized to the spiritual, emotional, physical, social, psychological, and cultural needs of the patient and family. The plan of care is dynamic and should be updated regularly as the status, goals, and priorities of the patient and family change. If goals of care are not clarified, the plan of care may go in the wrong direction.
Standard V: Implementation—The Hospice and Palliative Nurse Implements the Interventions Identified in the Plan of Care
All interventions need to be weighed by a benefit versus burden calculus that is, ideally, determined by or negotiated with the patient or surrogate decision maker. Although a palliative care approach generally focuses on symptom management, the nature of a particular symptom may lead a clinician to consider aggressive treatment to eradicate the cause, similar to an acute care approach. However, consideration must be given to the impact on the patient’s quality of life, the patient’s desire for intervention, and the potential for the intervention to cause further suffering. In patients with end-stage disease, the timeliness of the effect of an intervention must also be weighed against the amount of time an individual may have. Another important aspect of nursing intervention is timely referral to other health care disciplines and services and coordination of care to facilitate the interdisciplinary team expertise that is often required to meet the needs of the patient and family.
Many routine nursing interventions other than treatment can also be burdensome to patients with end-stage disease, particularly in inpatient settings. These include such routine tasks as daily weights, blood pressures, blood draws for laboratory studies, and even bathing and feeding. Inpatient facility routines, often designed for efficient diagnosis and disease management procedures, can also be burdensome to frail patients or those with end-stage disease. Care needs to be individualized and designed to optimize symptom management, to allow patients to maintain as much control as possible, and to enhance quality of life.
Standard VI: Evaluation—The Hospice and Palliative Nurse Evaluates the Patient and Family’s Progress toward Attainment of Outcomes
The effectiveness of the plan is evaluated in relation to achievement of the intended or acceptable outcomes. Palliative care interventions must consider the response of the patient and family to care as one of the most critical measures of effectiveness. The plan of care should be reviewed and revised according to the effectiveness of interventions at the time and according to the patient’s current priorities.
Patient Education
Throughout the nursing process, a critical role of the nurse is to guide the patient and family through all the information that is needed to understand care options. The emotional context of coping with illness, of grieving the many losses, and of anticipating death can make education and learning a challenge. Nurses in palliative care and hospice roles often need to tell people information that they may not want to hear. They also need to provide or reinforce a great deal of information in a short amount of time. The need for frequent repetition of information to patients and families should be expected, and the use of written educational materials to reinforce information can be helpful. Common education needs for patients and families include information related to the following:
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Disease, expectations for disease progression, and prognosis
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Treatment options, including realistic, expected outcomes of treatment
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Advanced care planning information and tools
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Patients’ rights, especially as related to decision making and pain management
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Care options, including hospice services and experimental treatments
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How to provide physical caregiving (for family caregivers)
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Signs of impending death
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Community regulations related to dying at home
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The grieving experience
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Resources for grief counseling and bereavement services
The HPNA provides patient teaching sheets that address many of the foregoing needs. These can be accessed at www.hpna.org .
Effective Communication
Because the emotional aspects of care can often be intense, it is critical that the care team be clear, consistent, and empathetic communicators throughout assessment, care, and evaluation. Nurses need to anticipate the difficult and common themes that accompany serious illness and end-of-life care. These themes include the meaning of illness, the desire to know when death will occur, truth telling among family members, and fears about suffering at the time of death. Other common fears are fear of pain and other physical symptoms, loss of control, and fear of the unknown. Palliative care practitioners need to anticipate these issues, feel comfortable discussing them, and develop competency in using clear and comforting verbal and body language.
To attain patient goals and to ensure continuity of care, effective communication must also extend to colleagues. All involved members of the interdisciplinary team need to be able to provide input in care planning, and be cognizant of patients’ goals of care. Another critical part of the communication process is for every team member to give a consistent message to patients and families, who are often struggling with difficult and emotional care decisions. Receiving mixed messages from members of the health care team can create anxiety and add to distress for all involved.
Spiritual Dimensions
A spiritual assessment, which includes cultural aspects of beliefs and values, is the first step in addressing spiritual needs. Nurses need to elicit important spiritual beliefs and needs, which can vary greatly among patients and their family members. It is important for nurses to understand some of the common beliefs, values, and rituals of cultural backgrounds of patients and families that may differ from their own. However, rather than making assumptions based on the culture of the patient and family, beliefs must be assessed individually. Some common spiritual needs include exploring the meaning of suffering, the existential issues of patients and families, and resolving unfinished issues or life tasks. Spiritual distress may exacerbate physical suffering, and it can greatly affect quality of life. Helping patients and families work through spiritual issues can also have a positive impact on the family’s grieving after the patient’s death.
Spiritual distress may be a concern for many patients and their family members, but nurses also need to be open to cues and opportunities for spiritual growth. For example, patients can be empowered to guide their family’s communication by being open about feelings, take the opportunity to resolve problem relationships, and explore religious beliefs.
Although some experienced nurses may be able to address spiritual issues and guide patients and families through spiritual tasks adequately, nurses also need to ensure that patients and families have access to the appropriate providers who can address spiritual needs. Ideally, this is a chaplain, community clergy member, spiritual guide, or other counselor who is also competent in addressing suffering for persons with serious and end-stage illness.
Nurses need to be aware of their own beliefs and values and ensure that they do not impose them on patients and families. It is important to be open to diverse ways of coping, grieving, and dying, rather than holding preconceived notions of how others should feel or behave.
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