A Concept Analysis of Palliative Care Nursing: Advancing Nursing Theory.

Advances in Nursing Science Vol. 00, No. 00, pp. 1–14 c 2017 Wolters Kluwer Health, Inc. All rights reserved. Copyright

A Concept Analysis of Palliative Care Nursing Advancing Nursing Theory Amanda J. Kirkpatrick, MSN, RN-BC; Mary Ann Cantrell, PhD, RN, FAAN; Suzanne C. Smeltzer, EdD, RN, FAAN The American Association of Colleges of Nursing specifies that all nurses must be prepared to deliver high-quality palliative care upon entry into practice. To achieve this aim, a clear understanding of palliative care nursing is needed. The Walker and Avant model for concept analysis was used to review and analyze relevant literature from 2000 to 2016. The authors utilized findings of this extensive review to develop a concept model and other practical resources for guiding nurses, educators, and researchers in applying and evaluating competence in the delivery of high-quality palliative nursing care. Key words: advance directive, advocacy, chronic disease, comfort, concept analysis, end-of-life care, nursing education, nursing research, nursing theory, palliative and hospice care nursing, palliative care

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NCREASING life expectancy among aging individuals is likely to result in growing numbers of elderly individuals enduring

Author Affiliations: College of Nursing (Dr Cantrell and Ms Kirkpatrick) and Center for Nursing Research (Dr Smeltzer), Villanova University, Pennsylvania; and College of Nursing, Creighton University, Omaha, Nebraska (Ms Kirkpatrick). Thank you to Dr Betty Ferrell and Dr Polly Mazanec, whose encouragement, guidance, and support at a recent ELNEC conference enabled a deeper understanding of palliative care nursing. Both offered consultation and recommendations for the revision and development of figures and tables included in this article. Regards and blessings also to the academic and practicing palliative care experts who reviewed and validated the CHAARM approach as a comprehensive description of the minimum competency expected of prelicensure nursing students. These experts include Drs Mary Tracy, Maribeth Hercinger, Helen Chapple, Cindy Selig, Kiran Hapke, Ms Leslie Kuhnel, and Ms Sara Trampe. The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article. Correspondence: Amanda J. Kirkpatrick, MSN, RNBC, College of Nursing, Creighton University, 2500 California Plaza, Criss 2, Office 222, Omaha, NE 68178 ([email protected]). DOI: 10.1097/ANS.0000000000000187

chronic and life-limiting illnesses before the end of their life.1 The rising prevalence of chronic disease and the growing aging population are creating a demand for palliative care.1 Palliative care is an interprofessional and personalized approach to care delivery aimed at improving quality of life and honoring the choices of individuals with life-limiting conditions across care settings.2 Increasing demands for palliative care services have resulted in hospitalization of these patients to obtain the care they require. This demand requires all nurses, regardless of their practice setting, to provide high-quality, holistic palliative care.3 PURPOSES OF THE ANALYSIS The purpose of this concept analysis is to clearly define palliative care nursing, including the attributes of palliative care delivery that should be expected of nurses in all settings. In the 2014 edition of Palliative Nursing: Scope and Standards of Nursing Practice, the American Nurses Association and the Hospice and Palliative Nurses Association (HPNA) emphasized that a palliative approach 1

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Statements of Significance What is known or assumed to be true about this topic: Increasing demands for palliative care in all health care settings indicate a need for all nurses to attain competency in palliative care. Current concept models emphasize palliative care as a medical specialty and neglect to address the unique role of the nurse in palliative care delivery. This gap in the theoretical understanding of palliative care nursing limits the potential for nursing education and research in this area. Establishing a clear understanding of palliative care nursing and those behaviors that demonstrate competence holds value for the implementation of effective education programs and efforts to evaluate these programs. What this article adds: The concept model of palliative care nursing clearly describes the palliative care nursing antecedents and attributes that are minimally necessary to achieve high-quality palliative care. The concept model and example cases are resources that nurses in practice, education, and research can utilize to guide instruction, understanding, and evaluation of palliative care nursing practice. The concept model can be utilized to further develop palliative care nursing theory and may be used as a theoretical framework to support and guide nursing education, practice, and research. Impact statement: The purpose of this analysis and literature review is to clarify palliative care as a theoretical concept within the discipline of nursing, including the attributes of palliative care delivery that should be expected of nurses in all settings. This concept analysis fills a knowledge gap in the theoretical understanding of palliative care nursing, which currently limits the potential

for nursing education and research in this area. Establishing a clear understanding of palliative care nursing and those behaviors that demonstrate competence holds value for nursing educators who must implement effective nurse training and nursing researchers who aim to evaluate these programs. in caring for seriously ill patients should be a fundamental practice of all nurses.4 To provide this specialized care, all nurses must be educated to implement palliative care principles in their practice. The HPNA provided a list of essential skills for all nurses, referring to this minimum proficiency as “primary palliative care nursing.”5(p3) These skills include the ability to discuss advance care planning, provide therapeutic, culturally sensitive support, and educate patients on their eligibility for services. In 2008, the American Association of Colleges of Nursing (AACN) endorsed “primary palliative care nursing” as a minimum competency in its accreditation standards for undergraduate baccalaureate nursing (BSN) programs.6 The AACN’s Essentials of Baccalaureate Education for Professional Nursing Practice specifies that all BSN graduates be prepared to, “implement patient and family care around resolution of end-of-life and palliative care issues, such as symptom management, support of rituals, and respect for patient and family preferences.”6(p31) More recently, the AACN approved the Competencies and Recommendations for Educating Undergraduate Nursing Students for Preparing Nurses to Care for the Seriously Ill and Their Families containing 17 competencies for nursing students.7 Dr Betty Ferrell was a pioneer in the development and adoption of these competencies. She has played a key leadership role in the palliative care nursing movement, specifically through the development of the End-of-Life Nursing Education Consortium (ELNEC) program. Dr Polly Mazanec was also a pivotal and representative voice in advocating for widespread adoption


Palliative Care Nursing and implementation of these competencies, emphasizing the need for all undergraduate nursing students to be educated in palliative care principles as part of their nursing curricula. Despite support for this minimum proficiency by key nursing organizations, a clear description of palliative care nursing as a theoretical concept has not been delineated. A search for relevant literature related to palliative care nursing revealed 21 concept analyses covering specific aspects of this specialized care, primarily near the end of life, such as comfort measures, grief, transience, and death preparedness. Only one concept analysis covered the overarching concept of palliative care in nursing, but was limited to pediatric palliative care.8 In addition, 2 concept analyses were found that utilized Rodgers’ evolutionary method to recount a chronological sequence of events in the evolution of palliative care within the United States.9 However, the authors of both analyses approached palliative care as a medical specialty, without emphasis on the unique role of nursing in the achievement of palliative care outcomes. SELECTING THE CONCEPT Although the theoretical definitions currently offered for palliative care by multidisciplinary stakeholders are relevant and emphasize the importance of interprofessional practice, there is some ambiguity about the nurse’s role on the interprofessional palliative care team.2,10-12 This ambiguity contributes to a vague description of palliative care nursing by subsuming the nurse as a nondescript member of the interprofessional palliative care team.13 This ambiguity has created an opportunity to define the concept of palliative care nursing within the context of expected nursing behaviors, regardless of patient age, stage of illness, health care setting, or country. Clarification of palliative care nursing as a theoretical concept, including its necessary antecedents, would be useful for the development of effective nurse education curricular content. In addition, establishing an op-

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erational definition and description of palliative care nursing would facilitate the ability to measure and evaluate performance of palliative care nursing among nursing students and nurses in practice.14 A conceptual model of palliative care nursing could also be a useful resource and framework for educators, researchers, and practitioners. This concept analysis was conducted in an effort to achieve these aims. METHODS The Walker and Avant model for concept analysis was used to review and analyze relevant literature to articulate the concept of palliative care nursing and advance nursing theory. Literature searches were conducted using the MEDLINE, CINAHL, and Google Scholar electronic databases, including variations of the terms “palliative care,” “end of life,” “hospice,” “concept analysis,” “theory,” “framework,” “model,” and/or “nursing” from the year 2000 to present. Abstracts and reference pages of all articles were also carefully reviewed to discover all literature essential for identifying core competencies of palliative care nursing practice to the point of content saturation. The identified literature was used to identify and define palliative care nursing attributes expected of all prelicensure nursing students upon graduation. Antecedents (the events that must precede palliative care nursing) and consequences (the expected outcomes of delivering this quality care) were also determined.15 RESULTS Clarification of palliative care terminology Palliative care is often used synonymously with end-of-life, terminal, or hospice care, leading to the misconception that palliative care is intended only for those in the final stages of life.9 Palliative care is the treatment and prevention of suffering in patients with progressive disease or serious injury, but not necessarily dying. This care is delivered


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throughout the continuum of a patient’s lifelimiting illness or injury, beginning as early as the point of diagnosis, and extends into the bereavement phase experienced by the family and significant others after an individual’s death.2,16,17 Terminal care and hospice care are forms of palliative care offered at the end of life. Hospice care is a program that focuses on care, not cure, in the last 6 months of a patient’s life.18 If patients opt to continue with curative or restorative treatment, they may forgo hospice and continue to receive palliative care through their end of life. Articulating a theoretical definition and assumptions In searching for a theoretical definition of palliative care nursing, a shared theory in palliative care was reviewed for relevance and possible incorporation. Desbiens et al19 developed the shared theory in palliative care as a framework for evaluating the acquisition of palliative care nursing competence. This shared theory resulted by their combining Bandura’s social cognitive theory and Orem’s theory of self-care. In their theoretical framework, Desbiens et al19 identified concepts of the nurse (competence, self-competence, and interventions) and the patient (self-care behaviors, physical/emotional symptoms, and quality of life). These theorists hypothesized that palliative care nursing competence and self-competence (or self-efficacy) contribute to the performance of palliative care nursing interventions, which is defined as “quality care that is appropriate in palliative care situations”.19(p2121) Although performance of palliative care nursing interventions is a critical element of the shared theory, the theorists’ description of these nursing behaviors is limited to this brief definition. The literature reviewed for this concept analysis indicated that palliative care nursing encompasses a range of health settings, disease states, and patient populations. International (World Health Organization and International Association of Hospice and Palliative Care) and specialty organizations (American Academy of Hospice and Palliative Medicine,

HPNA, and ELNEC) indicate in their interdisciplinary definitions of palliative care that the ultimate goal of this care is relief of suffering (physical, psychosocial, and spiritual) and promotion of quality of life.5,10,12,20,21 Therefore, for the purposes of this concept analysis, palliative care nursing is defined as the delivery of high-quality nursing care aimed at relieving suffering and promoting quality of life for all patients, neonatal through geriatric, with progressive, life-limiting conditions and their families, regardless of health state, required level of care, or health setting. In this theoretical understanding of palliative care nursing, assumptions are made about the patient and the nurse. Assumptions about the patient It is assumed that patients who receive palliative care have transitional health states because of debilitating, acute or chronic, progressive, life-threatening conditions resulting from illness or injury.9,10,22 It is also assumed that provision of palliative care to the patient includes care of the family. Patients and their families are considered a unit when providing palliative care. As such, families should be included in the care of the patient to best meet the needs of the patient and as bereavement support for the family.23 In this family-centered care, family includes all persons important to the patient, as defined by the patient.10 Assumptions about the nurse Palliative care nurses have varying levels of proficiency, ranging from competent to expert. Higher levels of nurse competence and self-competence in palliative care result in higher quality care.10,19 It is also assumed that palliative care of children requires additional baseline competencies for nurses and other providers, including knowledge of growth and development, medication dosing, etc.10,12 The nurse’s ability to achieve quality palliative care is also affected by personal, patient/family, system, and environmental factors, which can become barriers to palliative care delivery.13,19


Palliative Care Nursing Personal factors for the nurse who may impede the practice of palliative care include inadequate training, discomfort with discussing patient prognosis, and distractions from a nurse’s personal life (such as stress or a recent loss). Patient-related factors might include a sudden decline in health status or active resistance to the care provided. System factors may be contained within the nurse’s work environment, or include more global issues related to health policy that affect a nurse’s ability to provide quality palliative care. System limitations within a nurse’s practice environment include inadequate resources such as poor staffing, medication shortages, or ineffective medications in treating a patient’s symptoms. Examples of external environmental factors that disrupt or delay care may include workplace tension or inability to access supportive medical devices in the home environment.24 Operationally defining the concept Palliative care nursing is operationally defined as the quality of palliative nursing care delivery, measured objectively against the minimum standards of what a nurse should do in all palliative care situations. These minimum standards or empirical referents are identified in the discussion of critical attributes resulting from this concept analysis. Objective assessment of a nurse’s ability to provide palliative care, although difficult to achieve, is more helpful and contains less bias in identifying areas for improvement than selfreport instruments that are completed by the nurses regarding their own performance.19,25 Performance of palliative care nursing would be better measured with an objective instrument that evaluates the performance of each behavior deemed essential as an attribute of palliative care nursing. To date, an objective instrument for evaluation of these competencies has not been developed. Related terms and uses of the concept Terms from nursing and other disciplines related to palliative care nursing include primary palliative care, palliative care nursing

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interventions, competence, performance, behavior, and quality care.5,19 Although “performance” and “competence” are closely related, competence involves the integration of knowledge, skills, values, and attitudes, whereas performance is a utilization of these integrated capabilities.26 Desbiens et al19 refer to palliative care nursing interventions, behavior, quality care, and performance as synonymous terms in the context of palliative care nursing. Defining the critical attributes According to Walker and Avant,15 attributes are the most frequently occurring characteristics of a concept. On the basis of extensive review of the palliative care literature, 6 characteristics of palliative care nursing were identified: compassionate, holistic, attentive, adaptable, realistic/resolute, and moral. Each of these characteristics is explained here. Compassionate Compassion is foundational to development of a therapeutic and trusting relationship with patients and their families. While demonstrating compassion, nurses must communicate clearly, accurately, and honestly with patients about their prognosis and condition (as determined by a medical or advanced practice provider), and express genuine empathy for their situation. Both nurses and patients share part of themselves in the development of a mutually beneficial relationship; this includes sharing fears, values, and meanings regarding life and death.13(p79) A nurse’s communication should also be kind, therapeutic, and appropriate to the patient’s age and developmental stage.8,9,13,17,26-29 Holistic A holistic approach requires interprofessional collaboration, inclusion of patients’ families, and multifaceted therapies that incorporate the physical, developmental, functional, psychological, sociocultural, spiritual, and safety needs of patients and their families.8,9,13,25-28 This team-oriented


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approach optimizes care through the incorporation of differing perspectives and resources to address pain and other physical symptoms, as well as assessment of the patient’s functional and psychological needs.8,9,10,12,17,26 Complementary and alternative therapies may also be necessary to meet these needs.28 Palliative care nursing requires the delivery of emotional support for not only the patient but also the family in coping or grieving both before and after death.26 When appropriate, nurses should promote growth, development, and independence by empowering patients to perform self-care within their functional capacity, and encourage family members to help their loved one in meeting basic needs of daily living (such as eating and dressing).25,26 Promoting self-care increases patients’ autonomy, thereby increasing patients’ positivity about their abilities and overall quality of life. In addressing other dimensions of care, sociocultural concerns include caregiver roles, family dynamics/conflict, and sensitivity to the cultural needs of dying patients. Addressing this dimension is essential to facilitate a peaceful, respectful death.21,25,26,28 The spiritual dimension involves assisting patients in finding meaning in their illness experience, and may include expression through religious rites and existential growth.13,26 “Finding meaning” is often referenced in palliative care literature, emphasizing that patients benefit from acknowledging death, but focusing on honoring and living life fully and enjoying life as much as possible in a safe environment.25,28,30,31 Attentive Attentiveness in nursing care involves “being present” or “authentic presence” in the delivery of focused patient- and familycentered care.9,13,27 Being fully and authentically present requires the nurse to pause physically, mentally, and genuinely in a caring moment with the patient, making a deep connection through dialogue or in transcendent silence. This soothing nursing presence is comforting to patients’ suffering, as they transition toward a peaceful death.13 Atten-

tiveness is also required in the “impeccable” assessment and determination of a patient’s unique, individualized needs, including symptom management, through a systematic and standardized approach.12,28 Family-centered care, delivered as attentive support of the family, reduces caregiver burden and promotes the caregiving skills and self-care of family members.32 Nurses must also be aware and attentive to their own personal self-care needs.7 Adaptable Adaptable care requires a nurse to be responsive to the dynamic nature of illness trajectories, adjusting care strategies to meet the unique needs of each patient regardless of transitional health state, progressive level of care, or health care setting.10,13,16,22,33 Nurses often need to adjust to transitions in a patient’s health states by moving from simply meeting the physical needs of the patient, to addressing the unique and holistic needs of the patient through complex and supportive care.22,26 At the end of the patient’s life, nurses must adapt their approach to focus on the provision of patient comfort. This sometimes requires creativity to meet the simple and complex needs of the patient. There are specific transitions or phases of care that occur at the end of life. Nurses need to be able to recognize the signs and symptoms indicating that death is imminent to prepare the family for the moment of death.26 The focus of nursing care often shifts from patient-centered to family-centered care at the end of life.23 Qualitative studies have identified this phase of care as “family as patient,” highlighting the importance of family presence at the moment of death and supporting the family during the grieving process.28,31,34 Realistic/Resolute Delivery of palliative care nursing is resolute and purposeful. It requires intentional provision of quality care to meet realistic goals and improved outcomes for patients and their families. The ultimate purpose of palliative care for patients who are not actively dying is maximized well-being, which refers to quality


Palliative Care Nursing of life, including improved symptoms and optimal function.9,12,19,28 For dying patients, the aim of care is to provide comfort and dignity at life closure.19,27 Once a medical prognosis is determined and shared by the medical provider with the patient and family, the nurse has an important role in reframing the expectations of patients and families in the development of realistic treatment goals. Nurses must foster realistic hopes that are grounded within the expected outcomes of a patient’s illness trajectory. This might include supporting the patient and family in accepting transition of the goal from “cure” to a more realistic idea of the patient’s prognosis and treatment.13 This resolute and realistic care improves coping for patients and their families and assists patients in finding meaning in their illness experiences, allowing patients to embrace life in the face of death.13,28 Moral Morality in palliative care nursing requires nurses to take a humane approach to care delivery, and advocate for their patients’ wishes and well-being.27,28,30 Nurses must be conversant in the ethical and legal aspects of palliative care.26 Nurses also have a duty to understand their patients’ wishes to develop goals of care and advocate on their behalf.35-37 All patients, regardless of age, should be part of the decision-making process.8,13,16,31 In the promotion of autonomy and dignity, obtaining informed consent for treatment is imperative. Pediatric patients should also be given a developmentally appropriate description of their condition, including the risks and benefits of all treatment options, to obtain informed assent.8 Advance care planning requires open and honest discussions about the patient’s wishes, and designation of a surrogate for decisionmaking in the absence of the patient’s competence is important in anticipation of events that might compromise the patient’s ability to give informed consent or assent.38,39 When the wishes of the patients and their family members do not coincide, it is the nurse’s role to educate the family about the patient’s

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wishes with rationale and to advocate for those wishes to be upheld. Nurses are well positioned to facilitate these advance care planning discussions and play an invaluable, unbiased, and nonjudgmental role in helping patients and families plan for a dignified death.13,37-39 When combined, the 6 critical attributes identified in this concept analysis (compassionate, holistic, attentive, adaptable, realistic/resolute, and moral) result in the acronym CHAARM. The CHAARM acronym was developed in the process of conducting this concept analysis through synthesis of existing literature. The “CHAARM approach” comprehensively represents the characteristics of palliative care nursing, making it useful for instruction and application in nursing practice. According to the Merriam-Webster Online Dictionary, the term “charm” has a number of meanings, used to refer to something that is magical, alluring, or that has a compelling trait or physical grace.40 Receiving palliative care in a manner consistent with these attributes can be desirable or “alluring” to patients and their families. Table 1 aligns the CHAARM characteristics with the 17 AACN-approved competencies from the Competencies and Recommendations for Educating Undergraduate Nursing Students.7 This table demonstrates that the identified critical attributes of palliative care nursing are inclusive of the minimum proficiency expected of all nurses upon completion of their undergraduate program. Identifying antecedents The antecedents of palliative care nursing include palliative care nursing competence, self-competence, knowledge, experience, and self-awareness. These antecedents are dynamic, with a range and depth of acquisition or achievement, and influence palliative care nursing (which itself is also dynamic). Palliative care nursing competence and self-competence Palliative care nursing competence is the ability of the nurse to deliver high-quality palliative care. Such competence includes


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Table 1. Mapping of AACN-Approved CARES Competencies to the CHAARM Palliative Care Nursing Concept Model CHAARM Antecedents and Behaviors Antecedents Knowledge

Self-awareness Experience

Competence Self-competence

Compassionate Establishes trust Honest and empathetic Developmentally and culturally appropriate Therapeutic Holistic Multidimensional

Collaborative

AACN-Approved CARES Competencies 1. Identify the dynamic changes in population demographics, health care economics, service delivery, caregiving demands, and financial impact of serious illness on the patient and family that necessitate improved professional preparation for palliative care 8. Apply ethical principles in the care of patients with serious illness and their families 9. Know, apply, and effectively communicate current state and federal legal guidelines relevant to the care of patients with serious illness and their families 3. Recognize one’s own ethical, cultural, and spiritual values and beliefs about serious illness and death. 14. Provide competent, compassionate, and culturally sensitive care for patients and their families at the time of diagnosis of a serious illness through the end of life 17. Recognize the need to seek consultation (ie, from advanced practice nursing specialists, specialty palliative care teams, ethics consultants, etc) for complex patient and family needs & #14 (Above) 5. Educate and communicate effectively and compassionately with the patient, family, health care team members, and the public about palliative care issues & #14 (Above)

4. Demonstrate respect for cultural, spiritual, and other forms of diversity for patients and their families in the provision of palliative care services 10. Perform a comprehensive assessment of pain and symptoms common in serious illness, using valid, standardized assessment tools and strong interviewing and clinical examination skills 12. Assess, plan, and treat patients’ physical, psychological, social and spiritual needs to improve quality of life for patients with serious illness and their families & #14 (Above) 6. Collaborate with members of the interprofessional team to improve palliative care for patients with serious illness, to enhance the experience and outcomes from palliative care for patients and their families and to ensure coordinated and efficient palliative care for the benefit of communities 11. Analyze and communicate with the interprofessional team in planning and intervening in pain and symptom management, using evidence-based pharmacologic and nonpharmacologic approaches & #17 (Above) (continues)


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Table 1. Mapping of AACN-Approved CARES Competencies to the CHAARM Palliative Care Nursing Concept Model (Continued) CHAARM Antecedents and Behaviors Complementary and alternative therapies Family-centered

Resourceful Safety Attentive “Authentic presence” Systematic assessment

Diligent symptom management Self-care Adaptable Responsive Recognizes signs and symptoms of impending death Bereavement care Realistic/resolute Outcomes-focused

Realistic goals/hope Moral Advocacy

Ethical/legal Respectful, unbiased, nonjudgmental

AACN-Approved CARES Competencies # 11 (Above) 7. Elicit and demonstrate respect for the patient and family values, preferences, goals of care, and shared decision-making during serious illness and at end of life 15. Assist the patient, family, informal caregivers and professional colleagues to cope with and build resilience for dealing with suffering, grief, loss, and bereavement associated with serious illness & #’s 5 & 14 (Above) # 11 (Above) #’s 9 & 14 (Above) #’s 14 & 16 (Above) 12. Assess, plan, and treat patients’ physical, psychological, social, and spiritual needs to improve quality of life for patients with serious illness and their families & #10 (Above) #’s 11 & 12 (Above) 15. Implement self-care strategies to support coping with suffering, loss, moral distress, and compassion fatigue #’s 11 & 14 (Above) # 11 (Above)

#’s 14 & 16 (Above) 13. Evaluate patient and family outcomes from palliative care within the context of patient goals of care, national quality standards, and value & #’s 11 & 12 (Above) #’s 7 & 13 (Above) 1. Promote the need for palliative care for seriously ill patients and their families, from the time of diagnosis, as essential to quality care and an integral component of nursing care & #’s 7, 8, & 17 (Above) #’s 8 & 9 (Above) #’s 4, 7, & 14 (Above)

Abbreviations: AACN, American Association of Colleges of Nursing; CARES, Competencies and Recommendations for Educating Undergraduate Nursing Students.


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physical, mental, emotional, spiritual, and cultural aptitude.19 This competence relies on the knowledge (resulting from education), skills (refined through experience), and values and attitudes (heightened through self-awareness) that a nurse possesses for integration into the performance of highquality palliative nursing care to patients and families.26 A review of literature by Leigh41 identified a number of studies that identified the construct of self-competence (selfefficacy) as another determinant of improved confidence and clinical performance. Palliative care nursing knowledge and experience To develop competence in the provision of high-quality palliative care, palliative care nursing education and clinical experiences must be initially provided in undergraduate nursing curricula.6,19 Education and experience in palliative care nursing increase palliative care nursing knowledge. Higher palliative care nursing knowledge and experience contribute to greater perceived nursing self-efficacy among nurses in practice,42 and greater likelihood of quality palliative care nursing and palliative self-care behaviors by patients and their families.19 Education provided to nurses and nursing students must include a clear definition of palliative care. Confusion among providers and recipients of care regarding palliative care as a service intended only for dying patients can be a barrier to earlier patient referrals for specialized palliative care services from the point of diagnosis rather than during the final stages of life. It is imperative that these misconceptions be dispelled among nurses who are in the position to advocate for earlier consultation and initiation of palliative care services.9 Education about the ethical and legal issues related to palliative care also assists nurses in advocating for their patients, enabling them to address and discuss advance directives with patients and their families.38,39 Education and experience in utilizing a standardized and systematic nursing approach have the potential to improve the qual-

ity of nursing care; therefore, nurses must be educated and prepared to implement a structured approach in assessing, identifying, and managing the unique needs of these patients.27 The nursing process is a standardized approach used by nurses to deliver safe, holistic, patient-focused care. It involves 5 steps: assessment, diagnosis, planning, implementation, and evaluation.27,43 Assessment tools, such as the Edmond Symptom Assessment System, assist nurses in correct assessment and management of patients’ individualized needs to improve their overall quality of life.14 Experience in conducting these assessments and in caring for palliative care patients contributes to increased confidence on the part of the nurse in managing patients’ care throughout their progressive illness and at their life closure.19 Palliative care nurse self-awareness Self-awareness involves self-reflection to become conscious of one’s own spirituality, values, and beliefs about life, death, and dying.13 This process is important for nurses’ personal and professional development because they are able to recognize the influence of their own values, attitudes, and beliefs on care delivery.26,44 Self-awareness involves an intense and persistent curiosity and reflection about oneself, and the circumstances and situations in which one finds oneself.33 Nurses must recognize that personal factors, such as stress, can negatively influence the quality of care delivered to patients and their family. Nurses who are self-aware have the opportunity to develop adaptation and self-care strategies that ensure personal well-being and unbiased, nonjudgmental provision of quality palliative care.7,8,25,26 Self-awareness also fosters emotional and cultural competence in nurses working with diverse patient populations by assisting them to acquire a deeper understanding of and sensitivity to differing individual characteristics.33,44 Identifying consequences In the shared theory in palliative care, Desbiens et al19 proposed that palliative


Palliative Care Nursing care nursing interventions benefit patients through improved self-care, symptom management, and overall quality of life. The literature supports this proposition that quality provision of palliative care results in a therapeutic nurse-patient/family relationship with positive benefits and satisfaction for each person: the patient, his or her family member(s), and the nurse.9,33 Other benefits to the patient include improved symptom management, relief of suffering, and increased effectiveness of coping, all of which contribute to optimized function, well-being, and prolonged life.8,9,17,19 Dying patients who receive palliative care are more likely to achieve acceptance, discover meaning, and experience enhanced dignity and comfort at the end of life.17 During the end-of-life phase, patients and family members may also benefit from palliative care nursing through advance care planning, which leads to greater autonomy, effective closure, and improved bereavement outcomes.9,17 Nurses benefit from the delivery of quality palliative care nursing through existential growth. This expanded understanding of life and death increases the attributed meaning of their work, resulting in increased knowledge and personal satisfaction.13 There is also potential for nurses to achieve increased self-awareness, competence, and selfcompetence with this additional experience and reflection. Benefits to the system may also result from the implementation of palliative

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care. Cost containment and decreased hospitalization are common system benefits of quality palliative care that are of interest to policy makers and health system administrators.9,45 Developing a conceptual model and case examples Conceptual models provide a visual representation of the defining characteristics of a concept, and its antecedents and consequences.15 The CHAARM concept model of palliative care nursing (Figure) was developed in the process of this concept analysis. In this visual model, “family as patient” appears at the center,31,34 with personal, patient/family, system, and environmental factors represented as factors that could impede delivery of palliative care nursing. The triangles in this model also illustrate the inverse relationship that exists between the transitional health states of patients with life-limiting illness and Orem’s 3 nursing systems (supportive-educative, partially compensatory, and wholly compensatory systems). These systems offer progressive levels of support to patients, as they transition from independence to the end of life. For patients who are more independent, supportive-educative nursing systems empower patients and their families to perform self-care. Wholly compensatory systems are required by patients who completely depend on the nurse and their family to maintain their well-being until the moment of death.19(p2121)

Figure. CHAARM concept model of palliative care nursing (including CHAARM approach) developed through a concept analysis using the Walker and Avant model.


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As nursing responsibility grows, so does the corresponding width of the nursing systems’ triangle. Conversely, as a patient’s functional capability declines, so does the width of the health-state triangle nearing the end of life. The illustration of the relationships among the antecedents, attributes, barriers, and consequences in the CHAARM concept model has the potential to provide a consistent systematic approach for nursing education, practice,

and research. Examples for applying this concept model in nursing practice are provided by the model and borderline cases, presented in Table 2. CONCLUSION Use of theoretical framework for palliative care nursing advances nursing theory in this field by supporting research, education,

Table 2. Model and Borderline Cases of Palliative Care Nursing Model Case Amy, a competent and self-competent new graduate nurse on a pediatric unit, is assigned to care for Jack, an 8-y-old with postviral infection cardiomyopathy awaiting a heart transplant. Amy graduated from a nursing program that included palliative care education, clinical experiences, and purposeful self-reflective exercises. After report, she enters the room and introduces herself to Jack and his parents. She performs a careful and comprehensive assessment of Jack’s holistic needs. She recognizes that Jack has more energy this morning than he had the previous day, and could use a playful outlet. Amy contacts the child life specialist to spend some time playing his favorite game before daily family-centered care rounds. She then discusses Jack’s condition and plan of care with his parents, offering emotional support, as they discuss the realistic goal of maximizing Jack’s well-being. Together, they agree on a developmentally appropriate, honest approach for explaining to Jack his condition and prognosis. Amy recognizes the importance of explaining the process of heart transplantation and the subsequent posttransplant lifestyle to Jack so that he will be well informed before assenting to the procedure. A therapeutic relationship results between Amy, Jack, and his parents, leading to optimized well-being and increased satisfaction for all.

Borderline Case Molly, a competent, confident, and experienced palliative care nurse at a hospice facility, is assigned to care for Roxanne, a 54-y-old with stage IV metastatic lung cancer. Molly recently attended an ELNEC training session and took part in an introspective retreat focused on developing her self-awareness. She has cared for Roxanne regularly over the past 2 mo and has established a therapeutic relationship with both her and her husband, Gary. Molly has verified that Roxanne understands her diagnosis and wishes to withhold curative care. She has accepted that she is dying and aims to achieve a comfortable and dignified death with Gary at her side, holding her hand at life’s closure. Gary stopped by this morning on his way to work to offer Roxanne a kiss, promising to return later that evening. When Molly enters Roxanne’s room to drop off breakfast, she assesses Roxanne and immediately recognizes that she has had a change in mental status with slowed, shallow breathing. Molly calls Gary to notify him of Roxanne’s change in status, but does not clearly indicate that her death is imminent. Gary is at work and decides that he will stop by to see Roxanne at the end of his workday as planned. Roxanne dies with Molly at her side, holding her hand in authentic presence and assurance that her holistic needs are met. Gary arrives late, but within minutes of her death. Molly offers genuine, compassionate communication as she assures Gary that Roxanne died peacefully, free from pain and discomfort. Gary is supported in his bereavement, but regrets and resents that he was not with Roxanne at the end of her life.

Abbreviation: ELNEC, End-of-Life Nursing Education Consortium.


Palliative Care Nursing and practice initiatives.13 The CHAARM concept model can serve as a practical guide for nurses in providing palliative care to patients with progressive, life-limiting conditions. Although further empirical study is needed, research findings affirming the relationships and propositions within this concept model would support its use as a robust theoretical framework for guiding palliative care nursing education, research, and evaluation of nursing education and training programs on nurse and patient outcomes. Findings of this concept analysis using the Walker and Avant method suggest that palliative care nursing experience, knowledge,

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and self-awareness contribute to the development of palliative care nursing competence. Palliative care nursing competence and selfcompetence are also necessary antecedents to quality palliative nursing care.19 Potential outcomes of this quality care include improved patient well-being, acceptance and closure for the family, and increased nurse satisfaction. These outcomes can be achieved through delivery of compassionate, holistic, attentive, adaptable, realistic/resolute, and moral nursing care, which are the core competencies that a nurse should demonstrate following adequate undergraduate education and training.

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Spiritual care in nursing: a concept analysis.

A Concept Analysis of Personalized Health Care in Nursing.

Transcultural nursing scholars' corner: palliative care and transcultural nursing meet.

Community health nursing advocacy: a concept analysis.

An exploration of self-management support in the context of palliative nursing: a modified concept analysis.

Job satisfaction in nursing: a concept analysis.

Palliative care nursing in the virtual realm.

Advancing forensic correctional nursing.

Leininger's Culture Care Theory of Nursing.

Theory of nursing: creating effective care.

Professionalism in Iranian Nursing: Concept Analysis.

The International Collaboration of Orthopaedic Nursing: advancing nursing through technology.

Caring in nursing: analysis of extant theory.

Affordable Care Act: Overview and Implications for Advancing Nursing.

The Concept of Advocacy in Nursing: A Critical Analysis.

Nursing practice of palliative care with critically ill older adults.

A concept analysis of patient-centred nursing in the intensive care unit.

Othering in the nursing context: A concept analysis.

[The concept of quality in nursing and nursing services].

Negotiating futility, managing emotions: nursing the transition to palliative care.

Integrating palliative care in the nursing home: an interprofessional opportunity.

Palliative radiotherapy and oncology nursing.

Metaphor in nursing theory.

Full nursing potential: a concept clarification.