4.3 Nursing and palliative care

Although nursing is one of the oldest of the arts, it is one of the youngest of the professions. The origin of the word ‘nursing’ is derived from the Latin word nutrire, which means ‘to nourish’. The word ‘nurse’ has its roots in the word nutrix, which means ‘nursing mother’. Over the centuries, the meanings of these terms have broadened to encompass the training and education of a person who not only cares for the sick and dying, but also who cares for families, communities, and for humanity (Donahue, 1985).

Nursing has long been defined as both an art and a science. Nursing has moved beyond knowledge gained by reliance on tradition, trial and error, or authoritative statements of experts, to the generation of knowledge based on logical analysis and scientific inquiry. As a humanistic science, the purpose of nursing is to describe, explain, predict, and control phenomenon central to its concern, that of people and our world. The art of nursing is the creative use of the science of nursing for human betterment (Rogers, 1992).

Nursing has been an integral part of societal movements involved in the existing culture, while shaping and being shaped by culture (Donahue, 1985). Although dying and death are universal and part of the human condition, illness and death often can be delayed by science and medical technology. Life-prolonging therapies have assisted individuals to live longer with life-threatening illness, although death ultimately occurs. It has been understood that the care of those with life-limiting illness requires the best of modern science, along with an appreciation of emotional, social, and spiritual needs, and ways to alleviate any associated suffering.

As individuals are living longer with life-threatening or chronic illness, practitioners have realized that patients and families have needs and concerns that begin at the time of diagnosis, and that comprehensive care is needed from the time of diagnosis forward. Furthermore, care must be extended to families during the illness experience, through the death of the patient, and throughout the bereavement period for families. It also has become apparent that patients and their families, who are experiencing all types of life-limiting illnesses, and not only those affected by cancer, need this type of care.

Palliative care may be best understood as evolving from the original model of hospice care, but more explicitly endorses a combination of disease-modifying and supportive therapies intended to promote the well-being of patients and families experiencing serious, chronic, progressive and life-limiting or life-threatening illness. Palliative care not only focuses on pain control and symptom management, but also addresses the emotional, social, cultural, and spiritual needs of patients and families at any time during the illness trajectory, and unlike hospice care, is provided in the context of curative therapies. The ultimate goal of palliative care is to support the best possible quality of life for patients and their families (National Consensus Project for Quality Palliative Care, 2009). The concept of palliation is not new however. The term palliate has been seen in early records dating from the fourteenth century. It was in the eleventh century when the first hospices are believed to have originated, initially as refuges for weary travellers and religious pilgrims to Jerusalem in the Crusades, and later, to provide care for the sick and the dying (Connor, 1998).

Nurses, who are educated in palliative care nursing, ‘facilitate the caring process through a combination of science, presence, openness, compassion, mindful attention to detail, and teamwork’ (Coyle, 2006, p. 5). As members of the interdisciplinary palliative care team, nurses, physicians, social workers, and other health professionals each bring their own specialized competence and expertise gained through education, credentialing, and experience. Through interprofessional collaboration, an effective and compassionate plan of care is developed based on the best scientific evidence available, clinical judgement, and a recognition of the wishes and preferences of the patient and family, known as evidence-based practice.

With close to 19.4 million nurses globally, nursing is the world’s largest profession (World Health Organization, 2011). Consistently ranked the most trusted profession both in America (Gallup Incorporated, 2010) and internationally, nurses have a tremendous potential to reform health care and ensure quality care for seriously ill patients and their families. Nurses understand the individual’s need for control and can emphasize the patients’ and families’ active participation in decision-making. Nurses’ discussions with patients and families can ‘replace uncertainty with certainty, hopelessness with faith and despair with empowerment. Palliative care nursing is an exquisite blend of aggressive management of pain and symptoms associated with disease and its treatment, coupled with holistic and humanistic caring’ (Sherman and Matzo, 2006, p. xx). Palliative care nursing requires the integration of empirical, aesthetic, personal, and ethical knowledge in providing patient- and family-centred holistic care. This integration of nursing knowledge assists nurses in reshaping societal perspectives regarding illness, dying, and death. Nurses understand that, when individuals move beyond fear, there is an opportunity for healing and continued growth for patients and families, even as death approaches.

According to Coyle, the statement ‘I failed to care for him properly because I was ignorant’ (Coyle, 2006, p. 5) speaks to the need for health professionals, including nurses, to be educated in palliative care. The knowledge base of a discipline includes information, facts, principles, and theories that are organized according to the beliefs of the discipline. Throughout nursing history, knowledge has been obtained through tradition, expert opinion, borrowed knowledge from other disciplines, and role modelling. Based on an analysis of the conceptual and syntactical structure of nursing knowledge, Carper identified four fundamental patterns of knowing: empirical, aesthetic, personal, and ethical knowing (Carper, 1978).

As nursing has developed as a profession, it has been both recognized and accepted that nursing practice must be based on empirical knowledge, or the science of nursing, which involves problem solving, logical reasoning, and scientific inquiry. Empirical knowledge draws upon a reality that can be observed and measured, and therefore verified by others (Carper, 1978). Qualitative and quantitative research builds and tests theories and provides important insights regarding the health of individuals, families, and communities and the dynamic relationships with the environment. More specifically, nursing is interested in the lives of people in particular environments and their diverse perspectives on promoting health, preventing illness, and managing disease. The goal is to move to greater levels of health and wellness and to improve quality of life. The development, testing, validation, and application of theories through research provide the evidence that informs evidence-based practice. The concept of praxis is often used in nursing to describe the interactive relationship between research and practice—each informing the other (Rolfe, 2006).

With the adoption of evidence-based practice as the standard in medicine and nursing, all levels of evidence from lower levels of evidence such as expert opinion through to the meta-analyses of randomized controlled trials provide the empirical knowledge needed to guide nursing practice in general, as well as in palliative care. The combination of evidence-based practice with humanistic and compassionate care represents the imperative to integrate the science and the art of nursing.

Aesthetic knowledge or the art of nursing involves a deep appreciation of the meaning of a situation. Aesthetic knowing is made visible through the actions, conduct, attitudes, narrative, and interactions of the nurse in relation to others. It involves participating in or experiencing another’s feelings and the ability to envision valid ways of helping in relation to desired outcomes and the goals of care. Aesthetic knowledge enables a nurse to envision the possibilities and to know what to do and how to be in the moment. Aesthetic knowledge supports the dynamic integration of parts into a whole (Carper, 1978). In the care of those with life-limiting or chronic illness, aesthetic knowledge enables the nurse to see the entire situation related to the interplay of physical, emotional, social, cultural, and spiritual needs and to develop a plan of care that focuses on the whole person within the context of their family and community. Evidence-based practice involves not only empirical knowledge but also an understanding of the meaning of the situation, which further informs clinical judgement.

In addition to the integration of empirical and aesthetic knowledge, the clinician also integrates their personal and professional experiences in the form of personal knowledge. Personal knowledge refers to the inner experience of becoming a whole and genuine person. Personal knowing encompasses knowing one’s own self and others (Carper, 1978). Empiric theories can be learned, but their meaning for the individual comes from personal reflection and experience. Personal knowing occurs through entering the world of the person being cared for, understanding their world, and responding to them. Personal knowledge is therefore concerned with the quality of interpersonal contacts, promoting therapeutic relationships, and providing individualized care. Personal knowledge also involves personal integrity and honesty, as well as enthusiasm, courage, and imagination (Carper, 1978). As palliative care clinicians, nurses reflect on their personal and family experiences with illness, loss, and grief, as well as on the experiences of patients and families for whom they have cared. With personal knowledge, nurses respond in loving, and supportive ways to the suffering of patients and families.

Ethical knowledge must be integrated in palliative care. Ethical knowledge or the moral component of nursing is concerned with the right action within a situation. It includes voluntary actions that are deliberate and subject to judgement as right or wrong. Ethical knowing in nursing requires both experiential knowledge and knowledge of the formal principles, ethical codes, theories, and local, state, and federal laws that relate to or govern the discipline and society. It involves advocating for the patient. Ethical knowledge provides insight about which choices are possible and why. It provides direction towards choices that are good, sound, responsible, or just (Carper, 1978). In palliative care nursing, ethical knowledge is very important in assisting patients and families in making end-of-life decisions. Palliative care nurses are often members of ethics committees and grapple with ethical dilemmas in clinical situations.

The concept of emancipatory knowledge, a fifth way of knowing, was introduced in 2010 (Kagan et al., 2010). It denotes an awareness of social injustices and disparities, and the ability to investigate their sources, and bring about the changes needed to correct the systemic and underlying causes of injustice and oppression that impact health and society. Each individual pattern of knowing—empirical, aesthetic, personal, ethical, and emancipatory—is necessary, but insufficient alone for achieving the goals of nursing. All of the ways of knowing are important in defining the whole. This is illustrated by considering the response to a common question: ‘Which nursing intervention is best to relieve pain?’ An empirical study can test hypothetical relationships among methods of pain management, each of which is influenced by aesthetic meanings of relieving pain, personal meanings concerning the experience of pain, ethical values that influence how and when pain relief is given and received, and emancipatory factors that address social injustices and inequities that might affect equitable access to the treatment of pain (Carper, 1978). Failure to integrate knowledge within all of the patterns of knowing leads to uncritical acceptance, narrow interpretation, and partial utilization of knowledge. When this occurs, the ways of knowing are used in isolation from one another and the potential for synthesis of the whole is lost. When removed from the context of the whole of knowing, empirics produces control and manipulation; aesthetics produces indulgence in self-serving expressions and lack of appreciation for the meaning in a context; personal knowing produces isolation and self-distortion; ethics produces rigid doctrine and insensitivity to others (Carper, 1978); while emancipatory knowing alone could lead to aimless and ineffective activism. Palliative care nursing, therefore, involves the integration of all patterns of knowing to alleviate suffering and create an opportunity in which illness, dying, and death may become a time of healing or being made whole. In the formal education or continuing education of nurses in palliative care, it is important to recognize the integration of empirical, aesthetic, personal, ethical, and emancipatory knowledge so that nurses can ‘practice what they know’ and provide a holistic patient- and family-centred plan of care that is effective, evidence-based, compassionate, and equitable.

Across the world, there are aging populations, an increase in the incidence and prevalence of HIV/AIDS and cancer, and people living longer with prolonged advanced and chronic illness. The evolution of the field of palliative care has been a response to the changing profile of illness, dying, and death in the twentieth century (Stjernswärd and Pampallona, 2004). In the United States, for example, the number of Americans with serious or life-limiting illness is expected to double in the next 25 years with the aging of the baby-boomers (Morrison et al., 2011). Globally, the percentage of the total population over age 60 is expected to double from 11% to 22%, and the number of elderly over age 80 is expected to increase by a factor of 26 by 2050 (Bloom et al., 2011). In the decades to come, there will be an international imperative to care for aging populations, particularly as palliative care continues to expand its focus upstream from end-of-life care to the care of the patients and families experiencing serious, chronic, progressive, and life-limiting or life-threatening illness.

The increasing demand for palliative care services in the United States has been evidenced by the growth in hospital palliative care teams in the past 10 years. A decade ago, there were virtually no palliative care programmes in US hospitals. Today, palliative care teams can be found in 63% of the nation’s hospitals that have 50 beds or more. As such, access to palliative care in US hospitals has more than doubled in the past 5 years (Morrison et al., 2011). Hospice care, as part of the continuum of palliative care, has also experienced a rapid growth in the United States in response to demand. From 1984 to 2010, there was a 110-fold increase in the number of hospices participating in Medicare in the United States, rising from 31 to 3407 (National Hospice and Palliative Care Organization). Worldwide estimates suggest that over 300 million people or 3% of the global population have either palliative or end-of-life care needs each year (Skilbeck and Payne, 2005). The steady rise in the number of patients and families accessing hospice and palliative care services not only supports this projection of an increased future need (National Hospice and Palliative Care Organization), but also portends an increased need for adequately prepared generalist and specialist nurses in order to provide the care. There has been concern about the ability to meet this projected significant growth in the need for hospice and palliative care services with adequately educated and trained nurses.

In the past, the education of nurses in end-of-life care has been inconsistent at best, and was neglected for the most part, in both undergraduate and graduate nursing curricula (American Association of Colleges of Nursing (AACN), 1998). In 1997, the International Council of Nurses issued a mandate that nurses have a unique and primary responsibility to ensure the peaceful death of patients. In response, the AACN convened a round table of expert nurses to identify the precepts underlying hospice and palliative care. Round-table experts concurred that these precepts should be foundational to the educational preparation of nurses. Based on these precepts, the document, entitled Peaceful Death, was developed, which outlined baccalaureate competencies for palliative/hospice care and content areas where competencies can be taught (AACN, 1998). At the same time, the American Nurses Association formulated a position statement regarding the promotion of comfort and relief of pain of dying patients, reinforcing nurses’ obligation to promote comfort and ensure aggressive efforts to relieve pain and suffering. National, state, and local indicators also pointed to the need for all nurses to have generalist-level knowledge of palliative care.

Nursing practice is differentiated according to the nurse’s educational preparation, and licensure, which ranges from basic/generalist level through an advanced level of competency. Certified at the basic level of competency, the nurse may be licensed as a licensed practical nurse or registered professional nurse who has gained competencies in palliative and hospice care through their general educational programmes, professional work experiences, and ongoing continuing education. By virtue of graduate education and related clinical expertise, the advanced practice palliative care nurse is a specialist who demonstrates greater depth and breadth of knowledge and skill in theory, research, and practice reflected in the standards of care of palliative care and hospice nursing (Hospice and Palliative Care Nurses Association, 2002).

In the United States, the current expectation is that all registered nurses have a basic or generalist level of knowledge and competency in palliative care. This includes a holistic approach to care including pain and symptom assessment and management, cultural competence, effective communication skills, recognition of ethical and legal aspects of care, and knowledge regarding care of the imminently dying patient. To ensure that all nurses have generalist level knowledge of palliative care, several educational initiatives have occurred. Since 2000, initiatives have included the integration of palliative care content in nursing textbooks, including the seminal textbook Palliative Care Nursing: Quality Care to the End of Life (Matzo and Sherman, 2010) and the Oxford Textbook of Palliative Nursing (Ferrell and Coyle, 2010). Furthermore, there has been the integration of palliative care content in associate degree, baccalaureate, and graduate programmes through a project known as ELNEC (End-of-Life Nursing Education Consortium). ELNEC was established in 2000 with initial funding from the Robert Wood Johnson Foundation to develop a national curriculum to address the fact that most nursing students were not receiving adequate training and preparation for end-of-life care during their basic nursing education. Nearly 14,000 nurses and other health-care professionals from the United States and other countries have received ELNEC training to date to provide quality care to seriously ill and dying patients and their families. Those who have received training since the establishment of the ELNEC Train-the-Trainer programme have gone on to train 390,000 additional nurses and other providers in their respective institutions and organizations. Some developed countries are leading the way in terms of integrating palliative care education into their basic nursing education curricula. One notable example is Israel, where all general nursing programmes include a full unit of palliative care nursing.

Specialist palliative care nurses are also being educated and trained. These advanced practice nurses (APNs) must have the appropriate educational preparation to assume responsibility for health-care decisions and are acknowledged as core members, and often leaders of the palliative care team. In 1998, the first Advanced Practice Palliative Care Nurse Practitioner programme in America was begun at New York University in New York, under the leadership of Dr Deborah Witt Sherman. Subsequently, Dr Sherman took this Master’s curriculum to Tenshi College in Japan. The first Palliative Care Clinical Nurse Specialist (CNS) programme was begun at Ursuline College in Ohio under the leadership of Dr Denise Sheehan. According to the 2008 AACN Consensus Model for APNs (APRN Consensus Work Group & National Council of State Boards of Nursing APRN Advisory Committee, 2008), advanced practice level preparation for any specialty must be accomplished initially through education in one of four APN roles: CNS, Certified Registered Nurse Anesthetists (CRNA), Certified Nurse Midwives (CNMs), or Certified Nurse Practitioner (CNP) programmes. APNs must also be educated in at least one of six possible population foci: family, adult-gerontology, paediatrics, neonatal, women’s health, or psych/mental health.

Today, over 15 nursing schools in America offer specialist/graduate-level palliative care education by combining palliative care with other advanced practice master’s programmes such as an adult health, geriatric nursing or paediatric nursing (Hospice and Palliative Nurses Association (HPNA), 2013). While advanced preparation in palliative and hospice nursing can be accomplished in the context of a Master’s degree programme as a sub-specialty, it can also be accomplished by completing one of the available post-Master’s certificate programmes in palliative care offered at several American schools (HPNA, 2013). Through clinical experience and continuing education in palliative care, APNs in other specialties may also become eligible to take the advanced practice palliative care certification examination, provided they have the required minimum of 500 hours of supervised clinical practice specifically in the area of palliative care. Additionally, a Doctor of Nursing Practice (DNP) programme with a palliative care focus option recently became available at the University of South Alabama. In addition to the US and Japan, Advanced Practice Palliative Master’s programmes are offered in other countries, such as the United Kingdom and Australia.

In the United States and other countries, hospice and palliative care nurses associations have supported the evolution of palliative and hospice nursing. Certification at the generalist and advanced practice levels of palliative and hospice nursing continues to be a critical focus of these organizations. For example, since early 2001, in the United States, the number of registered nurses credentialed at the basic level has risen from 7000 to 11,600 (National Board for Certification of Hospice and Palliative Nurses (NBCHPN)). As of March 2012, 18,000 individuals have been certified in the United States by the NBCHPN as nursing assistants, licensed practical nurses, registered nurses, and APNs.

It is recognized internationally that certification in hospice and palliative care nursing is valued because the individual nurse:

The scope of palliative and hospice nursing continues to evolve as the art and science of palliative care develop. The philosophical precepts of palliative and hospice care emphasize the importance of holistic care offered to patients and families across the life span and in diverse health-care settings. As such, palliative and hospice nurses provide evidence-based care that addresses the physical, emotional, social, and spiritual/existential needs of patients and their families, with the primary goal of promoting quality of life through the relief of suffering along the illness trajectory. Palliative care nursing is provided to patients and families in acute care hospital units; inpatient palliative care units; inpatient, home, or residential hospices; ambulatory palliative care clinics; long-term care facilities and assisted living facilities; prisons; and private practices (Hospice and Palliative Care Nurses Association, 2002).

Relief of suffering and the possibility of improved quality of life for individuals and families are enhanced by:

Advanced Practice Palliative Care Nurses, who have advanced knowledge and skill in palliative care, play a vital role by assessing, implementing, coordinating, and evaluating care throughout the disease trajectory, as well as counselling and educating patients and families, and facilitating continuity of care between hospital and home. APNs also obtain knowledge about ethical issues facing individuals and families, and develop strategies to assist them in defining expected goals of care, as well as accessing and coordinating appropriate care. In addition to clinical expertise, APNs may assume leadership roles in practice, education, research, and administration, which further advance palliative and hospice care as a nursing specialty.

By articulating the scope and standards of professional nursing practice, the specialty defines its boundaries, informs society about the parameters of nursing practices, and develops the regulations for the specialty. As in all nursing specialties, nurses must practice within the scope of their specialty, as outlined by regulation, a professional code of ethics, and professional practice standards (Hospice and Palliative Care Nurses Association, 2002).

The standards of care reflect the values and priorities of palliative care nursing and provide a framework to evaluate practice (Box 4.3.1). These standards are authoritative statements, written in measurable terms, which define the palliative care nurses’ responsibilities and their accountability to the public regarding patient/family outcomes. The standards of professional performance describe the competent professional role behaviours of palliative and hospice nurses, including activities related to quality of care, performance appraisal, education, collegiality, ethics, collaboration, research, and resource utilization (Hospice and Palliative Care Nurses Association, 2002). The nursing process includes clinical decision-making and encompasses all actions of the nurse in the care of patients and families. Although the standards, which express the philosophical beliefs of palliative care nursing, remain stable over time, the criteria intrinsic to each standard changes as scientific knowledge and technology are advanced. The standards of care are written both at the basic and advanced practice levels and reflect the nursing process, which involves assessment, diagnosis, outcomes identification, planning, implementation, and evaluation.

Foundational to the standards of care are the following tenets:

Competency frameworks have evolved largely from Bloom’s learning taxonomy (Bloom, 1956) and take into account how knowledge attainment and skill development occur incrementally based on education and experience. A number of jurisdictions including the United States, Canada, Ireland, United Kingdom, New Zealand, and Australia have developed and, in many cases, validated palliative care nursing competency frameworks. These competency frameworks have been linked to nursing curriculum development in each respective country in order to establish and advance the skills, competencies, values, and standards of care for palliative care nursing (Connolly and Charnley, 2012).

The science of palliative care and hospice nursing focuses on the generation of basic and applied knowledge in describing, explaining, predicting, and controlling phenomena related to the care of individuals with serious, chronic, progressive, and life-limiting or -threatening illness and their families. The ultimate goal of nursing research is to improve the care of patients and families in areas of symptom management, psychological responses to illness, and the family caregiver experience (Ferrell, 2010). Qualitative studies in palliative and hospice care are important to understanding the subjective experiences of patients and their families and in developing theories for further testing. Quantitative studies are essential for testing theories, determining the incidence, prevalence, and severity of symptoms, and evaluating models of care and palliative care and hospice interventions.

Nurses have historically contributed to the advancement of research and science. Florence Nightingale, known as the ‘mother of nursing’, was identified as the first nursing researcher as she kept detailed and systemic records of her observations and understood the value of data in informing nursing practice. Early palliative care nurse researchers included Jeanne Quint Benoliel, who in the 1960s, established a programme of research focused on the subjective experience of patients following a diagnosis of life-threatening illness. In the 1970s, Ida Martinson studied the care of dying children, while in the late 1980s, Marilyn Dodd conducted research on patients’ self-care management of adverse effects of. In 1992, Elizabeth Clipp examined health transitions and the complexity of human functioning (Lunney, 2011).

Over last 25 years, nursing research has made significant contributions to science. With the establishment of the National Institutes of Nursing Research in 1997 as an Institute within the US National Institutes of Health, interprofessional colleagues, including nurse researchers, have examined phenomenon relevant to the specialty of palliative and hospice care. Similar research institutes in the United Kingdom, Canada, and Australia provide the international community with findings that inform evidence-based practice. Nursing researchers and scholars in academic institutions, particularly research universities and academic medical centres, are submitting research proposals for federal and foundation funding to advance the science of palliative care.

In 1998, the Hospice Nurses Foundation in the United States also became a funding agency for palliative care nursing research and published its first research agenda for 2009 to 2012 to investigate the symptoms of dyspnoea, constipation, and fatigue (HPNA, 2012). The HPNA research agenda for 2012 to 2015 (HPNA, 2012) is based on the Clinical Practice Guidelines for Quality Palliative Care, developed through the National Consensus Project (National Consensus Project for Quality Palliative Care, 2009). Although there are eight domains of palliative care propounded in the Clinical Practice Guidelines, the HPNA research agenda focuses scientific inquiry on the first three domains, specifically on structure and processes of care, physical aspects of care, and psychological and psychiatric aspects of care. The domain of structure and processes of care considers the optimal membership of interdisciplinary teams, the focus on the patient and family as the unit of care, and the locations and models of care delivery. The research agenda related to physical aspects of care focuses on issues related to symptom management and the decline of individuals with multiple co-morbid conditions, as well as a focus on the physical care of patients in special populations. Within the psychological and psychiatric domain, the focus of inquiry is on the needs of individuals with serious mental illness (HPNA, 2012). Other funding agencies are interested in ways of promoting interprofessional education, the value of professional specialty certification, the integration of palliative care concepts into standard care across health communities, the value of concurrent curative with palliative care, and the use of research findings to shape health policy (HPNA, 2012).

As generalists or specialists in palliative and hospice care, all nurses have the opportunity to participate in research dependent on their level of education. Nurses at all levels can identify clinical problems specific to the specialty, serve as members of the research team, participate in data collection for pilot projects, surveys, or formal studies, critique research findings to determine the application of findings in practice and in the development of standards of care and the development of policies (Lunney, 2011).

In collaboration, nursing scientists and clinicians are responsible for evidence-based practice as the empirical findings of research inform clinical practice. The quantity and quality of research are evident in the number of scholarly publications and presentations at national and international palliative care conferences. For example, 14% of the 1073 palliative care English-language, peer-reviewed research articles published in 2010 and found through the CINAHL database identify nurses as either first or co-authors (Lunney, 2011). Nurse researchers, as principal investigators, often lead the interprofessional research team where each provide their specialized perspective to identifying relevant research problems, and offer expertise in quantitative or qualitative research methodologies. As a research team, nurses, physicians, and other health professionals consider ways of overcoming the barriers to recruitment and challenges to retention of such vulnerable populations as individuals who are seriously ill and dying and their family members. All health professionals must be committed to research collaboration to move forward the science of palliative and hospice care as a specialty.

APNs play a pivotal role in palliative care (Sherman and Cheon, 2012). Several articles and research studies have examined the role of the palliative care APN. Many of the early studies were conducted outside the United States. Based on a study conducted in Switzerland, Hurlimann et al. (2001) reported that CNSs in palliative care influence patient care by direct care, bedside teaching, and case reviews. Jack et al. (2003) conducted a qualitative study to investigate the role of the CNS within a palliative care team in an acute care hospital setting in the United Kingdom. The results, based on interviews of 23 nurses and physicians, indicated that palliative care Nurse practitioners (NPs) offer support and advice to colleagues, as well as education, which improves the quality of care. Corner et al. (Kuebler, 2004) conducted a longitudinal study in England, which enrolled 76 patients and assigned them to 12 Macmillan palliative care nurses over a 28-day period. Based on the EORTC Quality of Life Questionnaire, significant improvements in emotional and cognitive functioning and in patient anxiety scores, measured by the Palliative Care Outcomes Scale, were reported from baseline to day 7. Patient records further indicated overall positive outcomes of care from Macmillan specialist palliative care interventions in 55% of the cases.

Quaglietti et al. (2004) propose that APNs are uniquely positioned to ‘bridge’ the gaps in health care based on their independent practice, varied practice sites, and improving reimbursement patterns. Studies have also been conducted regarding the effectiveness of specific roles of nurses in improving the quality of life of patients with life-threatening diseases. Aiken et al. (2006) conducted a randomized trial comparing the PhoenixCare demonstration programme of palliative care and coordinated care/case management for serious chronically ill patients with chronic heart failure (N = 130) and chronic obstructive pulmonary disease (N = 62), with an equal number of controls who received active treatment from the managed care organizations. Registered nurse case managers provided intensive home-based case management to address disease and symptom management, prepare for end of life, assess physical and mental functioning, and utilization of medical services by patients and families. The results indicated that patients in the intervention group had lower symptom distress, greater physical function, higher self-rated health, and better outcomes on self-management of illness. This novel model of patient care, which combined greatly enhanced palliative care with ongoing managed care organization treatment, was associated with improved quality of life for patients with serious chronic illness.

Additional US studies have clearly demonstrated some of the benefits of APNs in palliative care. Bookbinder and colleagues (Bookbinder et al., 2011) have suggested that NP-based delivery models can increase access to and the availability of specialist-level palliative care in the community. A recent palliative care clinic pilot study (Owens, et al., 2011) demonstrated that NPs by experience and education are ideally suited to manage both primary and palliative care needs of individuals. Other studies (Bakitas, et al., 2009; Dyar et al., 2012) have found that APN interventions in palliative care were not only well received by patients and families, but also demonstrated measurable improvement in patients’ quality of life and mood.

The health-care cost-effectiveness and quality of care for NPs in general has been well demonstrated (American Academy of Nurse Practitioners, 2010; Newhouse et al., 2011). The cost-effectiveness of in-hospital and home-based palliative care has been clearly shown by a reduction in health-care spending for America’s sickest and most costly patient populations (Brumley et al., 2007; Penrod et al., 2010). However, there are a limited number of studies that specifically focus on the cost-effectiveness of APNs in palliative care. Nonetheless, nurse coordination of palliative care has been shown to maintain the level of clinical care and outcomes, while saving costs. One study reported a 40% cost savings with nurse-led palliative care (Payne et al., 2002). Further studies are warranted to provide information on cost-effectiveness in the context of quality care, and to obtain further evidence regarding the patient and family outcomes related to care provided by hospice and palliative care nurses, and particularly by those at the advanced practice level. While palliative care has become an economic imperative in reducing the health-care costs, palliative care is, more importantly, ‘a humanistic imperative to insure that quality of life is promoted during all phases of the illness experience for both patients and their family caregivers’ (Sherman and Cheon, 2012).

According to Payne, ‘Nurses have been and continue to be important in spearheading, introducing and developing hospice and palliative care services internationally’ (Payne et al., 2002, p. 21) One of the key roles in the development, advancement and performance of the palliative care nursing is that of educator. The role of the palliative care nurse as educator ideally involves a variety of communications and interactions that may encompass any and all of the following: patient care and families, other health and social care providers, nursing students, institutional decision and policy makers, ethics consultants, community stakeholders and organizations, and political officials.

In the academic setting, palliative care nurses advance the specialty through curriculum development and the inclusion of palliative care teaching units and concepts, as well as through palliative care-focused research, dissemination, knowledge transfer, and research utilization. Palliative care nursing education is being enhanced and made more accessible through programmes such as the ELNEC Train-the-Trainer, which facilitates the dissemination of nursing knowledge to nurses and other colleagues both domestically and abroad (Paice et al., 2007).

In clinical practice settings, palliative care nurses have a role as health educators in promoting optimal patient and family well-being through teaching activities such as pain and symptom management; patient rights and decision-making; informing families of community and social support services; and teaching about other therapies, interventions, and self-care. Palliative care nurses as health-care team members mentor and teach other members of the interdisciplinary team regarding evidence-based approaches in palliative care.

Palliative care nurses are also public health advocates given that palliative care is a public health concern. ‘Since death has a universal incidence, the incidence, de facto, makes it a public health concern’ (Foley, 2003, p. 25). The aforementioned shifts in population and disease demographics, as well as the aging, dying, and palliative care needs of the ‘baby boom’ generation will place a strain on health-care systems and resources and will represent one of the key public health challenges of the century (Gott and Ingleton, 2011). The characteristics often seen in public health priorities are now seen with palliative and end-of-life care, such as major impact, high social and financial burden, and the potential to mitigate illness-related suffering for patients and families (Rao et al., 2002; Foley, 2003).

Globally, here is a tremendous need for increased access to quality palliative care. Only 1 billion people worldwide have access to opioids and some form of palliative care services, particularly in North America, Europe, Australia, and New Zealand. However, more than 5 billion people do not have access to basic pain and symptom management medications and services. The lack of access to pain relief and palliative care an urgent global public health crisis, particularly the lack of equitably access in underdeveloped countries (San Diego Hospice, 2012). By virtue of their numbers, experience, education, time spent at the bedside, and insight into the lived experiences of patients and families, nurses have the potential to play a prominent role in as public health advocates for palliative care at the local, national, and global level (Payne et al., 2009). As both citizens and patient advocates, palliative care nurses work with key decision- and policymakers to inform them about the importance and effectiveness of quality, accessible, and equitable palliative care to improve outcomes, cost-effectiveness (Morrison et al., 2008; Penrod et al., 2010), and to ensure the preservation of basic human rights and dignity. In doing so, palliative care nurses continually serve as advocates for patients, families, and communities, in promoting global health and well-being (Payne et al., 2002) through micro and macro level activities and engagement.

As public health advocates, the role of the palliative care nurse involves the following:

In addition, palliative care nurses advocate for a new perspective, which includes a focus on health and its promotion, even in the face of serious illness. Palliative care nurses assist patients and families in living life each day to the fullest, with the enhancement and maximization of their potential and the achievement of health even within the context of illness (Skilbeck and Payne, 2005).

Nursing is a way of being in the world which involves a desire to support and care for others and the intention to heal. Nurses witness the suffering of people and are drawn towards them very often in informal caregiving roles as family members, friends, or members of a community, as well as in professional roles. In witnessing suffering and death, there is often an awakening of nurses’ own sense of mortality. Nurses learn of the preciousness of each day, the struggles to find meaning in life and death, as well as the opportunities to transcend the mundane and realize a connection to something larger than self. Though nurses may view living and dying through different lenses because of different cultural or spiritual perspectives, nurses’ intentions remain focused on doing good, preventing harm, and being fair and just as they care competently and compassionately for others. As nurses mature as people and in their role as nurses, the egocentric ‘I’ shifts to a ‘We’. The pain or joys of others are felt in a nurse’s heart and their intellect strives to gain the knowledge and skills necessary to offer care to the whole person—mind, body, and spirit. Nurses seek to understand the world not only through formal education, but also through their life experiences as they learn about themselves and observe others. Indeed, patients and families often demonstrate a sense of resiliency in the face of adversity and teach others how to die with grace and dignity.

Nurses strive to understand the societal changes occurring at international, national, regional, and local levels that influence health and well-being. Nurses seek to make a difference in the lives of their patients, families, and communities as they work towards human betterment and goals that promote the greater good. The future vision for palliative care and hospice nursing rests on the belief that nurses are a valuable resource in national efforts to improve care and quality of life for patients and their families living with advanced, life-limiting illness. It is through collaborative efforts that the roles of hospice and palliative care and hospice nurses will be fully actualized. Professional organizations in nursing, medicine, hospice, and palliative are called upon to engage in dialogue about the role of APNs, and opportunities and strategies to advance the role. Nursing educators must become knowledgeable about palliative care and develop continuing education programmes, which support palliative care and hospice nursing competencies. Researchers are called upon to continue examining the effects of palliative care education, interdisciplinary palliative care teams, the impact of palliative care generalist and specialist nurses, and the safety, quality, and cost-effectiveness care provided APNs in palliative care. Models of palliative and hospice care delivery in rural areas, in the community, at home, in skilled nursing facilities, and hospital settings, and their impact of patients, families, goals of care, advance care planning, and quality of life are needed. APNs who practise in palliative care and hospice are called upon to document and disseminate the health-care outcomes and engage in interdisciplinary research and translate research findings into practice (Promoting Excellence in End of Life Care, 2002).

Payers of health-care services are called upon to recognize the specialty of palliative care, and provide APNs with adequate and consistent compensation that is commensurate with APNs scope of practice, authority, and responsibility, regardless of practice setting. Regulatory agencies, such as state, national, regional and global nursing organizations, are called upon to work collaboratively and consistently to recognize the scope and standards of advanced practice palliative care nursing. Insurers and legislators are called upon to remove barriers that prevent APNs from practising to the full extent of their education and training, to address challenges related to APN billing processes, and to eliminate inequalities in reimbursement rates for APN services. Health-care systems and providers are also asked to develop or expand practice opportunities for APNs in all settings that care for patients who may experience life-threatening illness. Health-care systems are called upon to develop and maintain interdisciplinary palliative care teams, establish effective policies related to the ethical and evidence-based provision of palliative and end-of-life care, and to work towards the goal of achieving certification where possible, such as through the Joint Commission’s new Advanced Certification Program for Palliative Care in the United States.

The vision for palliative care and hospice nursing will be actualized through the collective efforts and commitment of nurses at all levels of practice. Nurses’ full potential in health care will be fulfilled by a combination of exceptional knowledge in nursing, clinical skill, sensitivity, originality, ambition, desire, and self-respect. Nurses must continue to nurture their intellect, creativity, and spirit; rely on their own authority and ability to self-govern the profession; value the integrity of human wholeness by offering care which integrates empirical, aesthetic, personal, ethical, and emancipatory knowledge; and have faith and confidence in their personal and professional abilities. Indeed, a universe of infinite potentials arises for palliative care and hospice nurses as they ‘Dream Big’ and create a reality that improves the quality of care and quality of life of patients with life-threatening illness and their families.