1 Introduction

Nursing care is central to all hospice and/or palliative care (“palliative care”) service delivery and is underpinned by the World Health Organization definition of palliative care (World Health Organization 2003). Having emerged from its informal religious roots, palliative nursing has evolved into a dynamic discipline that works with other interdisciplinary team members to improve care outcomes for people living with and dying from progressive illness and their families. Palliative nursing, along with palliative care, has evolved rapidly since the late 1970s and has largely been driven by a social movement designed to improve the care of people dying from cancer (Phillips et al. 2015). Dame Cicely Saunders (1918–2005), a nurse, social worker, and physician, responded to this need and established St Christopher’s Hospice in North London, where care was focused on the physical, psychological, and spiritual needs of dying patients (Pace and Lunsford 2011). This holistic care model was rapidly translated to other high income countries such as Canada and Australia, while the uptake of palliative care in the United States of America occurred much later, partially in response to the landmark “SUPPORT study” (Connors et al. 1995). This large randomized controlled trial conducted at five US teaching hospitals lent considerable support to the need to improve palliative care in the world’s largest economy. The subsequent release of the Institute of Medicine’s “Approaching death: improving care at the end-of-life” (Institute of Medicine 1997) strengthened this call to action. Emerging from these developments has been the establishment of specialist palliative care nursing and recognition of the increasing importance of primary palliative care (Box 1) (Quill and Abernethy 2013).

The purpose of this chapter is to provide an overview of the role of nursing in the context of contemporary interdisciplinary palliative care.

Box 1 Key Definitions

Nurses – Regulated health professionals who work across all care settings (acute care, aged care, primary care) and in doing so provide care for people with palliative care needs and their families. These nurses provide primary palliative care.

Palliative nurses – Nurses who work specifically in the care of people with palliative care needs and their families. These nurses might work in specialist inpatient services (e.g. hospices, palliative care units) or in a consultative role working alongside nursing and interdisciplinary colleagues. These nurses provide specialist palliative care.

Palliative care – The definition provided by the World Health Organization has been adopted for this chapter: http://www.who.int/cancer/palliative/definition/en/. This definition refers to people who are affected by a life-limiting illness and advocates for the nursing role (generalist and specialist) to enable those affected to live as well as possible with their complex healthcare needs managed as well as possible.

1.1 Key Constructs Underpinning Palliative Care Nursing

Palliative care demands a skilled interdisciplinary response, with nurses playing a central role. Several constructs underpin contemporary palliative care nursing practice, including domains of nursing practice, evidence-based practice, person-centered care, and a population-based approach to palliative care. Each is essential to providing best palliative care, at the right time, every time, as detailed below.

1.1.1 Evidence-Based Practice

The notion that health service evaluation must be guided by scientific evidence, not clinical impression, was first suggested in the 1970s (Rosenberg and Donald 1995). Since then, evidence-based healthcare has become a guiding force in clinical practice and gradually embedded across various disciplines, including nursing. Evidence-based nursing care extends beyond mere reliance on research evidence, with nurses required to concurrently assess the risks, benefits, costs, inconveniences, and patient preferences in relation to proposed care (Scott and McSherry 2009). In the palliative care setting, these considerations are even more crucial due to the complex interplay of a patient’s vulnerability, diagnosis, prognosis, goals of care (Owens 2009), and a rapidly evolving evidence base (Tieman et al. 2008).

In order to exercise astute clinical judgment, nurses need prerequisite capabilities to successfully integrate evidence with their clinical expertise and patient preference(s) (Scott and McSherry 2009). Despite having positive attitudes toward evidence-based practice (Mehrdad et al. 2012; Stokke et al. 2014), recent research suggests that many nurses minimally engage in providing evidence-based care (Stokke et al. 2014). Keeping abreast of new evidence is challenging (Phillips 2015), which has led to the development of various publicly available websites, including: CareSearch (www.caresearch.com.au); Cochrane Library; Joanna Briggs Institute; and eviQ, which all host specialized evidence-based resources relevant to palliative care.

Having located the evidence, the next challenge is to critically appraise this in a rigorous way. At a minimum, all nurses need to be able to evaluate a study’s methodological strengths and weaknesses before carefully considering its results, relevance, and applicability to their own practice. Critical appraisal tools such as those electronically hosted in the Critical Appraisal Skills Program (CASP) and Joanna Briggs Institute website provide nurses with a framework to systematically analyze research evidence for their trustworthiness and relevance.

Notwithstanding, the step up from “best evidence” to “best practice” requires concerted system level efforts, and nurses have ample opportunities to integrate best evidence to practice in day-to-day decision-making and care delivery. As nurses continue to shape palliative care practice through their diverse roles, from providing bedside care in an institutional setting to working as advanced nurse practitioners, every nurse needs to consider how they can integrate and promote evidence-based care into all healthcare decisions.

1.1.2 Ethical Behavior and Consumer Rights

The responsibility of providing palliative nursing care to vulnerable patients is often associated with ethical challenges that need to be addressed judiciously. An understanding of beneficence, non-maleficence, autonomy, and justice (Webb 2005) helps nurses uphold high standards of ethical conduct while addressing the unique issues pertaining to a patient’s end-of-life care needs. Some of the common ethical issues that nurses’ encounter are determining competency to consent, advocacy, and withholding and/or withdrawing treatment. Determining a patient’s competency to consent is critical to striking a balance between respecting their autonomy to making informed decisions and protecting them if they are unable to do so.

When a patient lacks the competence to make a decision about treatment, substitute decision makers must be sought. Nurses have a responsibility to ensure that competent patients are provided with relevant information to assist them in making informed choices about the goals of care, proposed treatments, and burdens and benefits of participating in clinical trials (Anyfantakis and Symvoulakis 2011). Vulnerable palliative patients may be easily persuaded to make choices that they would not normally make. In such situations, nurses have a responsibility to act as patients’ advocates ensuring that the patient’s voice is heard and their choices are respected (Webb 2005). As the discipline that spends the most time with patients, nurses are best placed to advocate for the patient’s preference and goals of care, symptom management, and cultural and spiritual needs (Earp et al. 2008). Advocacy in palliative care is not limited to speaking up “on behalf” of the patient but also involves providing patients with the support and information they require to speak for themselves regardless of their level of dependency (Webb 2005). The strengths of the nurse-patient relationship provide nurses with unique access to the perspectives, preferences, wishes, and concerns of the patient living with and dying from progressive illness.

Nurses play a central role in ensuring that the patient’s voice is heard, especially when decisions about forgoing and/or starting a medical treatment are made (Albers et al. 2014). Careful consideration of the benefits versus the burden of proposed treatment and its impact on the patient’s quality of life ought to inform all decision-making processes. While physicians are more often responsible for such decision-making, the involvement of nurses in this process is essential (Albers et al. 2014). It is also crucial for nurses to be able to differentiate between withholding and withdrawing treatment, and provision of effective symptom relief and euthanasia. While the former is carried out with an intent to minimize treatment burden and improve patient’s quality of life, the latter is intended to end a patient’s life (New South Wales Department of Health 2005). Nurses may receive requests from families asking for “something” to bring an end to the suffering of their loved ones in the last days of their life. Such requests demand the utmost care to identify why such a request is being made at this time and to determine alternative actions that could address the patient’s and/or family’s concerns (Caresearch 2017).

1.1.3 Person-Centered Care

Person-centered care is a fundamental component of effective palliative care and underscores the importance of interdisciplinary care for people living with and dying from progressive illness. There are many definitions of person-centered care; however, two are of specific relevance to palliative care nursing, namely: (1) dimensions of patient-centered care as articulated by the Picker Institute (Picker Institute Europe 2017) and (2) constructs articulated in a person-centered practice framework developed by McCormack and McCance (2017). The Picker Institute identified eight characteristics of care that are most important to patients and their families (Barry and Edgman-Levitan 2012) and has since detailed these as the principles of person-centered care, namely: (1) fast access to reliable healthcare advice; (2) effective treatment delivered by trusted professionals; (3) continuity of care and smooth transitions; (4) involvement of, and support for, family and carers; (5) clear, comprehensible information, and support for self-care; (6) involvement in decisions and respect for patient’s preferences; (7) emotional support, empathy, and respect; and (8) attention to physical and environmental needs (Picker Institute Europe 2017). In the McCormack person-centered practice framework, four constructs are considered essential for the provision of person-centered nursing care: (1) prerequisites and/or nursing attributes; (2) care environment and/or context of care; (3) person-centered processes of care; and (4) person-centered outcomes (Fig. 1) (McCormack and McCance 2017).

Fig. 1
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The person-centered practice framework (McCormack and McCance 2017, p. 63) (Source: Permission obtained to use the figure)

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Nurses are in a unique position to both lead and innovate in relation to provision of person-centered care especially as they are the only health professional available 24 hours a day in most care settings. This exposure to patients and families provides nurses with a unique opportunity to establish and develop therapeutic relationships that address the principles of person-centered care. Understanding how to achieve person-centered care is fundamentally important for all nurses but particularly for those providing palliative care given the complexity of patient and family needs. Indeed, a synthesis of a large body of research conducted over the past 25 years has identified the elements of care inpatients and their families considered to be most important at the end-of-life (Fig. 2) (Virdun et al. 2015, 2017). These areas of importance align with the principles and constructs of person-centered care. It is these elements of importance that ought to inform the provision of optimal person-centered palliative nursing.

Fig. 2
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Area of importance for optimal end-of-life care in hospitals: patient and family perspectives (Virdun et al. 2015)

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1.1.4 A Population-Based Model of Palliative Nursing

The demand for palliative nursing continues to grow in response to changing epidemiology, population aging, the recognition of the value of early palliative care, and the need to extend timely palliative care to populations beyond cancer (Morrison et al. 2011; Temel et al. 2010). Meeting this increased demand will be challenging for specialist palliative care services, especially, if people with palliative care needs are to have access to a comprehensive and holistic service. There is now recognition of the importance of developing interdisciplinary population-based models that are designed to improve access to palliative care in accordance with need (Luckett et al. 2014).

A population-based approach to palliative care service planning focuses on strengthening the delivery of palliative care provided by the patient’s usual care team (“primary palliative care”) in the acute care, community, and aged care settings (Quill and Abernethy 2013). Adopting a population-based approach helps to facilitate a responsive and inclusive method of addressing the particular geographical, social and cultural needs of people with a progressive illness (Palliative Care Competence Framework Steering Group 2014). It helps to ensure that palliative care is more accessible for Aboriginal-first nation peoples, socially disadvantaged people, people living with nonmalignant illness, and people living in rural and remote areas, all of whom often have more limited access to palliative care (Palliative Care Competence Framework Steering Group 2014). For example, a population-based model of care is key to improving the provision of palliative care to older people in nursing homes who have unmet palliative care needs. In this care setting, the primary palliative care ought to be provided by the older person’s usual care team (care assistants, registered nurses, and general practitioner) and be augmented with specialist palliative care input and active patient and primary care engagement (Candy et al. 2011; Hall et al. 2011; Davies et al. 2011). Implementing this type of model would do much to address poor symptom control, unnecessary hospitalizations, suboptimal communication, inadequate advance care planning, and families who are dissatisfied with palliative care (Phillips et al. 2006).

Comprehensive interdisciplinary specialist palliative care services are central to operationalizing a population-based model of care. Providing direct care and/or consultative services in the tertiary, secondary and/or primary care settings, these specialist palliative care services (including specialist nurses) are ideally placed to provide local leadership, training, mentorship, and supervision to support the delivery of primary palliative care by other health professionals and to undertake research and/or quality initiatives (García-Pérez et al. 2009; Higginson and Evans 2010). Implementing a population-based approach requires that all nurses, regardless of specialty training, are able to provide primary palliative care to the patients and families they service. It also requires specialist palliative nurses to operate alongside nurses providing primary palliative care. Furthermore, a commitment to building collaborative care partnerships and the palliative care capabilities within the broader interdisciplinary care team is vital. By making better use of scarce resources, specialist palliative nursing is then reserved for patients and families with the most complex needs (Palliative Care Australia 2005).

1.1.5 Domains of Nursing Practice

Regardless of the care setting or population, all nurses are required to practice in accordance with the relevant legislation affecting nursing practice in healthcare. Nurses function within several key domains of practice, and while these may vary across countries and/or jurisdictions, they largely focus on (1) critical thinking and analysis; (2) engagement in therapeutic and professional relationships; (3) maintenance of the capability to practice; (4) comprehensive assessments; (5) development of a plan for nursing practice; (6) provision of safe, appropriate, and responsive quality nursing practice; and (7) evaluation of outcomes to inform nursing practice (Nursing and Midwifery Board of Australia 2016). In Australia, these standards are conceptualized as a matrix, with interrelated Standards 1–3 forming the y-axis, while Standards 4–7 describe the dimensions of practice and form the x-axis. Each standard has criteria that specify how that standard is demonstrated within the context of each registered nurse’s practices (Nursing and Midwifery Board of Australia 2016).

Nurses are also required to operate within a professional and ethical nursing framework. Practicing within an evidence-based framework, participating in ongoing professional development, and systematically developing the capabilities of others are considered core competencies necessary for critical thinking and analysis. The provision of coordinated and effective care requires nurses to have the capabilities to conduct a comprehensive and systematic nursing assessment, plan care in consultation with other members of the interdisciplinary team and in accordance with patient preference, implement comprehensive safe and effective evidence-based nursing care, and evaluate the care. Establishing and/or maintaining therapeutic relationships as well as appropriately concluding them and collaborating with other members of the interdisciplinary team underpins all collaborative and therapeutic practices (Nursing and Midwifery Board of Australia 2016). The competency standards for registered nurses are the foundation upon which specialist competencies are built.

1.1.6 Palliative Care Competencies

Preparing the nursing workforce to operate within a population-based model requires consideration of the competencies required to fulfill the different levels of specialization and defined scope of practice. While there is considerable debate about the most appropriate definitions and methods of assessments, nursing competencies are generally considered to represent a dynamic combination of knowledge (basic or specialized), skills (assessment, communication, critical thinking, time management, customer services, technical skills, and teaching), and abilities (caring, character, and professional presentation) which contribute to understanding (Aranda and Yates 2009). In preparing the nursing workforce to provide palliative care, it is important to consider the competencies required for each of the four levels of nursing practice across the six domains of palliative care, namely: (1) principles of palliative care; (2) communication; (3) optimizing comfort and quality of life; (4) care planning and collaborative practice; (5) loss, grief, and bereavement; and (6) professional ethical practice in the context of palliative care (Palliative Care Competence Framework Steering Group 2014). The European Association for Palliative Care has identified the following ten core interdisciplinary palliative care competencies considered necessary for optimizing patient and family outcomes (European Association for Palliative Care 2013) (Box 2).

Box 2 Ten Core Interdisciplinary Palliative Care Competencies (European Association for Palliative Care 2013)

  1. 1.

    Apply the core constituents of palliative care in the setting where patients and families are based.

  2. 2.

    Enhance physical comfort throughout patient’s disease trajectory.

  3. 3.

    Meet patient psychological needs.

  4. 4.

    Meet patient social needs.

  5. 5.

    Meet patient spiritual needs.

  6. 6.

    Respond to the needs of family carers in relationship to short, medium, and long-term patient care goals.

  7. 7.

    Respond to the challenges of clinical and ethical decision-making in palliative care.

  8. 8.

    Practice comprehensive care coordination and interdisciplinary teamwork across all settings where palliative care is offered.

  9. 9.

    Develop interpersonal and communication skills appropriate to palliative care.

  10. 10.

    Practice self-awareness and undergo continuing professional development.

As the provision of high-quality palliative care is an essential responsibility of the whole healthcare system, many countries, jurisdictions, and/or professional bodies have developed palliative care competency frameworks (Palliative Care Competence Framework Steering Group 2014; Aranda and Yates 2009; Palliative Care Nurses New Zealand 2014). Competencies have been variously defined but generally refer to “…a cluster of related knowledge, skills and attitudes that affects a major part of one’s role (a role or responsibility) that correlates with performance on the job, that can be measured against well–accepted standards, and that can be improved by training and development” (Parry 1996).

Recognition of the different levels of palliative care nursing specialization is central to developing a competency framework, with four different levels of palliative care nursing specialization evident across the healthcare system, including primary palliative care nurses (“all”), palliative care nurses’ champions (“many”), specialist palliative care nurses (“some”), and palliative care advanced practice or nurse practitioners (“few”) (Table 1) (Palliative Care Competence Framework Steering Group 2014; Aranda and Yates 2009; Palliative Care Nurses New Zealand 2014).

Table 1 Levels of palliative care specialization (Palliative Care Competence Framework Steering Group 2014; Aranda and Yates 2009)
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The palliative care nursing capabilities required for each of these four levels increases in intensity as the role becomes more focused on the specialty. At a minimum, all nurses require the capabilities to provide basic pain and symptom management, including managing anxiety and depression, and initiating conversations about prognosis, suffering, and goals of care and patient preferences, especially around resuscitation status (Quill and Abernethy 2013). Specialist palliative care nurses are required to have more advanced skills and the capabilities to manage refractory pain and other symptoms, including complex depression anxiety and existential distress; and assist with resolving goals of care, treatment, and/or family conflicts as they arise (Palliative Care Australia 2005). Palliative care nurse practitioners have a broader scope of practice and operate in accordance with the values, guidelines, and principles set out by their governing regulatory and professional bodies (Aranda and Yates 2009). All nurses will need to continue to learn throughout their professional life as new evidence emerges within this field.

As developing a sustainable nursing workforce capable of providing high-quality care requires a targeted response, several countries have established national professional development frameworks for cancer and/or palliative care nursing (Palliative Care Competence Framework Steering Group 2014; Aranda and Yates 2009; Palliative Care Nurses New Zealand 2014). Underpinned by a population-based approach, these professional development frameworks define nursing’s contribution to palliative care and highlight the contribution all nurses make, irrespective of their role (Palliative Care Nurses New Zealand 2014). As previously described, four broad levels of palliative care nursing practice have been identified (Refer Table 1) to reflect the different levels of competencies required of nurses working in different contexts (Palliative Care Nurses New Zealand 2014). The level of palliative care competencies required at each of the four levels of practice reflects the number of palliative patients cared for by nurses and is best conceptualized as the “all, many, some, and few” competency framework as depicted in Fig. 3 (Aranda and Yates 2009; Palliative Care Nurses New Zealand 2014). Within each of the four levels, nurses will be functioning at differing levels of competencies from beginning through to advanced levels. This progression is reflected in their capacity to integrate theory, practice, and experience (Palliative Care Nurses New Zealand 2014). Increasing degrees of autonomy in judgment and interventions is evident as nurses become more specialized (Palliative Care Nurses New Zealand 2014).

Fig. 3
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A professional development model for palliative care nurses (Palliative Care Nurses New Zealand 2014, p. 6)

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1.1.7 Certification and Credentialing

In addition to the competency framework, some organizations have moved to introduce certification and/or credentialing processes. Certification is generally undertaken by professional bodies (i.e., Palliative Care Nurses Australia) on behalf of its members. Certification processes are designed to publicly acknowledge the achievements of nurses working in specialized areas against a predefined set of requirements (Aranda and Yates 2009). A major limitation of most certification processes is they lack the detail necessary to guide employers as to whether a particular nurse can function effectively in all areas of practice (Aranda and Yates 2009), whereas credentialing is a more comprehensive process that is normally undertaken by an employing organization. Credentialing clearly documents the scope of practice of a particular nurse in a specific practice setting and is often locally defined (Aranda and Yates 2009).

1.2 Policy and Practice

Operationalizing a population-based approach to palliative care requires consideration of the competencies required by all nurses working within the healthcare system and strategies to ensure the provision of best evidence-based person-centered care. Integrating the person-centered practice framework to palliative nursing in accordance with the EAPC’s ten core palliative care competencies allows for the identification of systems, education, clinical service delivery, and research improvements and/or innovation opportunities to improve care outcomes for patients and their families with palliative care needs (Table 2). All such areas have implications for global palliative care nursing policy and practice.

Table 2 Applying palliative care competencies to ensure the provision of person-centered palliative nursing (McCormack and McCance 2017)
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1.3 Conclusions

Nurses globally are central to addressing the palliative care needs of people living with a progressive life-limiting illness and their families. In partnership with other members of the interdisciplinary team, nurses are responsive to palliative populations’ needs within the context of the governing values, guidelines, and principles set out by the relevant regulatory and professional nursing bodies’ and governments’ priorities. The adoption of a population-based approach to planning offers opportunities to increase the access patients and families have to timely and best evidence-based palliative nursing care. Continuing to evolve and integrate new evidence into practice while building palliative care nurses’ capabilities within their scope of practice will ensure that more patients have access to optimal palliative care. In order to improve outcomes for populations with palliative care needs, nurses need to develop new knowledge in partnership with their practice, education, and research colleagues.