PALLIATIVE CARE COMPETENCIES 2. Developing Palliative Care Competencies for the Education of Canadian Nurses

PALLIATIVE CARE COMPETENCIES 2 Developing Palliative Care Competencies for the Education of Canadian Nurses During their careers, most nurses are exposed to suffering and death, and to those requiring palliative and end-of-life care regardless of the settings in which they work (Brajtman, Fothergill-Bourbonnais, Fiset, Casey & Alain, 2009; Halliday & Boughton, 2008). Moreover, such experiences are likely to increase significantly as the population ages. Despite this reality, many nurses enter the workforce ill-prepared to address end-of-life issues and lack the set of knowledge and skills required to deliver quality palliative care (Brown Whitehead, Anderson, Redican, Stratton, 2010; Halliday & Boughton, 2008; Mallory, 2003; Shea, Grossman, Wallace, & Lange, 2010). These deficiencies in knowledge and skills have been associated with ineffective communication and insensitivity toward palliative patients and their families, thus compounding suffering at an extremely vulnerable time in their lives (Halliday & Boughton, 2008; Mok, Lee, & Wong, 2002). Death anxiety, a common phenomenon among nurses, has been found to be associated with denial, avoidance, and repression, behavioural characteristics that are antecedent to substandard palliative and end-of-life care (Halliday & Boughton, 2008; Mallory, 2003; Mok, Lee, & Wong, 2002), Studies demonstrate that undergraduate nursing students exposed to a combination of didactic and either experiential or problem-based learning opportunities in palliative and end-oflife care experience significantly less death anxiety, greater comfort caring for dying patients and their families, and greater skill in pain and symptom management than their peers (Brown Whitehead et.al, 2010; Mallory, 2003; Mok et.al., 2002; Shipman et al., 2008; Sherman et. al., 2004). It is, therefore, essential that undergraduate nursing curricula incorporate learning opportunities to prepare students for the practice of palliative and end-of-life care. Although the Canadian Nurses Association requires graduating nurses to possess such competencies

PALLIATIVE CARE COMPETENCIES 3 (Canadian Nurses Association, 2010), historically the education of Canadian nurses in this field has been woefully inadequate (Caty & Tamlyn, 1984; Downe-Wamboldt & Tamyln, 1997; Brajtman et. al., 2007; Brajtman et.al., 2009). Articulating specific competencies to guide the educational preparation of undergraduate nurses is an important step in addressing the need to better prepare new nurses to provide palliative and end-of-life care. Such competencies can offer clear direction for the integration of palliative and end-of-life content in educational curricula for nurses. The purpose of this paper is to present consensus based, national nursing competencies in palliative end-of- life care (PEOLC), developed in a Canadian Association Schools of Nursing (CASN) project funded by Health Canada. The project was led by the CASN Palliative and End-of-Life Care Task Force struck by the Association to address curriculum gaps in this area of nursing care in Canadian schools of nursing. The background context for the development of the competencies will be presented first, followed by the methods used. The competencies that have emerged from this process will be presented and the paper will conclude with the next steps planned to promote the integration of palliative and end-of-life care content in undergraduate nursing education. Background Context Political recognition of the need for better palliative and end-of-life care provided an important stimulus to the project. Reports to the Canadian Senate, and particularly one entitled, Quality End-of-Life Care: The Right of Every Canadian (Carstairs, 2000), catalyzed action to develop PEOLC competencies for health professionals in Canada as part of a broader initiative to galvanize health system change. In 2002, Senator Carstairs supported the development of the Canadian Strategy on Palliative and End-of-Life Care in Health Canada. This Strategy involved

PALLIATIVE CARE COMPETENCIES 4 the creation of five working groups: Best Practices and Quality of Care, Education for Formal Caregivers, Public Information and Awareness, Research, and Surveillance. The impetus for examining the educational preparation of nurses for palliative and end-of-life care came out of the Inter-professional Education Initiative of the Education Working Group (CASN, 2007). To further the political and educational momentum of the Strategy, Health Canada first funded a five year project in 2003, Educating Future Physicians in Palliative and End-of-Life Care (EFPPEC), under the aegis of the Association of Faculties of Medicine of Canada. The goal was to develop competencies specifically for undergraduate and postgraduate medical trainees. The second initiative was to foster curriculum development for nurses through the CASN competencies development project that will be presented in this paper. This project built on work that had already been started by the Canadian Association of Schools of Nursing, which will also be described as it was the preliminary phase in the competency development process. In 2004, the Canadian Association of Schools of Nursing (CASN) struck a Task Force on Palliative and End-Of-Life Care to promote the integration of this area of nursing care in undergraduate nursing curricula. Task Force members included palliative care content experts chosen from among nurse educators at schools of nursing across CASN member schools. The task force also included a member of the Canadian Hospice Palliative Care Association, and a representative from a Regional Palliative Care Program. All Task Force members were invited to participate based on their expertise in this field. The Task Force mandate included the development of PEOLC competencies for nurses that were informed by nurses. The goal was to draft a set of competencies that were grounded in the literature, relevant for nursing educators, and amenable to inter-professional practice so that they might serve as a guide for curriculum

PALLIATIVE CARE COMPETENCIES 5 development. In 2006, Health Canada provided funding to advance the competency development initiative of the Task Force through a national consensus building process. Addressing gaps in palliative and end-of-life care in Canadian nursing education through a strategy of competency development was reflective of an outcome-oriented trend in health professional education. A competency-based curriculum defines the end behavioural characteristics of the learner to focus on the know-how of practice in a particular situation. The introduction of this approach to curriculum development represented a response to a call to reform the education of health professionals (Calhoun, Ramiah, McGean Weist, & Shorten, 2008). In the literature, the term competency is not consistently defined, in fact, there is often slippage between the terms competency and competence. Goudreau et al. (2009) define competency as: a complex know-how that is based on combining and mobilizing knowledge, skills, attitudes, and external resources and then applying them appropriately to specific types of situations (p. 1). Competencies are described elsewhere as a unique set of theory-based, evidence-driven knowledge, skills, and other attributes for practice in a particular situation (Calhoun et al., 2008). Epstein and Hundert (2002) offer an expansive definition of professional competence that resonates with desired outcomes for nursing programs: the habitual and judicious use of communication, knowledge, technical skills, clinical reasoning, emotions, values, and reflection in daily practice for the benefit of the individual and the community being served (p. 226). These definitions guided the work of the CASN Task Force on Palliative Endof-Life Care.

PALLIATIVE CARE COMPETENCIES 6 The Competency Development Process and Methods The development of national PEOLC nursing competencies involved a multi-step, emergent, interactive, and iterative process. An overarching principle guiding this process was to build a national consensus about the essential PEOLC specific competencies for nurses among experts in this field while simultaneously generating, revising, and refining them. There have been three stages in this iterative, multi-step process: 1) Generating a preliminary set of competencies, 2) Building a national consensus among educators and experts in the field on PEOLC specific competencies for nurses, and 3) Refining the consensus based competencies for curriculum development. Generating preliminary competencies. The first phase occurred prior to the national consensus PEOLC competency project and provided the building blocks for this project. In this phase, a small working group of the CASN Task Force established in 2004 reviewed the nursing literature on palliative and end-of-life care to help them generate a draft set of competencies. During this step in the process, members of this group differentiated PEOLC competencies that are important in nursing in general from those that are PEOLC specific. Eight general competencies and eleven specific PEOLC competencies were formulated. These competencies were then critiqued by Task Force team members over a period of several weeks to refine the two lists. An assessment of the relevance of the preliminary general and specific competencies for nursing education was incorporated into an environmental scan of PEOLC content in undergraduate nursing programs in Canada conducted by the Task Force as part of its mandate. This involved determining whether or not each of the general and specific preliminary PEOLC

PALLIATIVE CARE COMPETENCIES 7 specific competencies developed by the Task Force were being addressed in the curricula of CASN member schools and inviting comments about them. A web-based survey tool distributed by Survey Monkey was sent to the Academic Heads of the ninety-one CASN member schools who were asked to either respond themselves or have a nurse educator familiar with the content in palliative and end-of-life care taught in the school respond to categorical (nominal) response choice questions. Each question included the option of adding comments or concerns about the competencies. Fifty-one of the ninety-one schools (56%) completed and returned this survey tool. The responses to the environmental scan indicated that the general competencies were addressed in undergraduate nursing curricula. Further, the preliminary PEOLC specific competencies were addressed in 49% to 82% of the responding schools of nursing and evaluated in 35% to 65% of the schools (See Table l). Of note is that these competencies were addressed in either an undergraduate non-nursing course or in a nursing course or module unrelated to palliative and end-of-life care. Pain assessment, for instance, was often taught in content related to medical/surgical care or pharmacotherapy. Moreover, responses indicated that there were gaps in curricula relative to PEOLC across the schools. The least addressed and evaluated competencies were: "knowledge of principles and standards of palliative care in a culturally diverse Canadian context, "knowledge of the unique needs of diverse populations (i.e. elders, children, those with cognitive impairment), "evidence of an effective collaborative approach to care within an integrated, inter-professional and inter-sectoral team," and tied for third least, "the ability to assess and attend to individual/family psychosocial issues as well as practical concerns such as discharge planning.

PALLIATIVE CARE COMPETENCIES 8 Although the environmental scan confirmed that gaps existed in preparing students for palliative and end-of-life experiences, taken as a whole it also validated the relevance of the preliminary draft competencies for nursing educators in Canada as all but one were addressed in over half of the schools that responded. Building national consensus on PEOLC competencies. The goal of this phase was to generate national consensus-based PEOLC specific competencies using the preliminary draft competencies as a starting point. It consisted of three distinct but related activities. A national symposium, systematically obtained feedback from Schools of Nursing, and feedback from content experts. The first activity was the national symposium held in Ottawa, in March 2007. A key objective of this forum was to review and revise the preliminary PEOLC specific competencies developed by the CASN Task Force on Palliative and End-of-life Care Education (CASN, 2007). Participants included 32 nurse educators, nursing students, and representatives from nursing organizations and government, all with expertise in PEOLC. They were divided into four table groups of eight to review the draft version of the competencies and then share their work at a plenary session. Consensuses-based comments on the competencies as a whole and on each competency were collated at the symposium, and then were used to guide a revision of the competencies by the Task Force members following the symposium. Overall, symposium participants considered that the competencies successfully covered the scope of this nursing role and, if implemented, would prepare nurses to provide palliative and end-of-life care within an inter-professional team. They found that the competencies aligned with

PALLIATIVE CARE COMPETENCIES 9 physician competencies and that the competencies were consistent with, and augmented, position papers prepared by other professional groups (CASN, 2007). A number of recommendations were made by symposium participants in relation to the competencies. First, the consensus was that the self-care competency should be expanded to include understanding one s own needs, development of support networks, being open to learning, and knowing how to be with suffering. Second, with respect to the competency related to pain, it was recommended that the word complex be deleted from complex pain and symptom management. Finally, it was suggested that the ability to respond to unique and marginalized populations should be added to a competency that referred to the ability to attend to the needs of diverse populations (CASN, 2007). Following the symposium the comments received were reviewed by Task Force members. Wherever a clear consensus-based revision to a competency was recommended, the revision was made. As a result of incorporating this feedback, the 11 initial competencies specific to palliative and end-of-life care were increased to 13. The next step in this phase was to obtain feedback on the revised competencies through a systematic process from two stakeholder groups, the Schools of Nursing and content experts in the field of palliative and end-of-life care. Thus, the revised set of 13 competencies was sent to the Academic Heads of CASN member schools who were asked to have a faculty member knowledgeable about palliative and end-of-life care provide feedback from their school. This feedback was obtained through a questionnaire distributed by Survey Monkey and by mail. Unfortunately, however, only 16 of the 91 schools responded to this survey. Responses indicated that the competencies identified relevant knowledge, skills, and practices for palliative and end-

PALLIATIVE CARE COMPETENCIES 10 of-life care. Generational issues and spirituality were identified, however, as needing to be incorporated into the competencies. Ninety five content experts from across the country were asked to review the competencies. Feedback on the competencies was again obtained using Survey Monkey. Fortyfive of the content experts contacted provided feedback requested. Specialists in palliative and end-of-life care, they included administrators, coordinators, and managers (10), nursing consultants (8), faculty members and clinical instructors (7), clinical nurse specialists and nurse practitioners (7), social workers and volunteers (3), palliative care physicians (2), academic directors of nursing schools (2), registered nurses (5), licensed practice nurse (1). Informed consent was obtained from all content experts. Feedback was obtained by asking them if they agreed or disagreed that each of the specific PEOLC competency is appropriate. They also were provided with the option of commenting on each competency. There was a high degree of agreement among this group of stakeholders that each competency is appropriate (see Table 2). The competencies that emerged following another round of revision by the Task Force based on the stakeholder input were reported in a CASN PEOLC Task Force Report (2009). The 13 competencies sent out to the two stakeholder groups for feedback were retained. Competencies one, three, ten, and eleven stayed unchanged. Revisions to other competencies involved relatively minor changes that did not substantially alter them. Refining the specific PEOLC competencies. The last phase has involved a final refinement of the competencies in a follow up project fostering the implementation of palliative and end-of-life care content in nursing curricula. An inter-professional working group in the follow up project has been engaged in identifying entry-to-practice indicators for each competency as a curriculum guide to facilitate

PALLIATIVE CARE COMPETENCIES 11 implementation of the competencies. The final refinement of the competencies has been part of work on identifying indicators for the competencies. Four experts and the full Task Force were asked to validate that the refined competencies continued to reflect the 13 competencies that emerged in the consensus building phase, and that they continue to capture the full scope of the essential PEOLC competencies. The expert group and the task force each confirmed that both criteria were met. In preparing the final version, the competency statements were revised with the 13 competencies becoming a more comprehensive, manageable, and clearly worded list of 9. Final PEOLC Specific Competencies The final specific palliative and end-of-life competencies for nurses developed through this multi-step, iterative, and interactive process are the following: When graduating from nursing school, students will be able to provide patient/family-centred palliative and end of life care aimed at relief of suffering and enhancing quality of life. This approach to practice is grounded in the concept of comfort care. 1 The newly graduated nurse will provide this care by: 1. Using requisite relational skills to support decision making and negotiating modes of end of life care on an ongoing basis. 2. Demonstrating knowledge of grief and bereavement and the ability to support others from a cross-cultural perspective. 3. Demonstrating knowledge and skill in holistic, family-centered nursing care of persons at end of life who are experiencing pain and other symptoms. 1 Comfort care is a nursing art that is holistic, individualistic, creative, and efficient, a concept historically embedded in nursing theory but one that requires further conceptual development (Kolcaba, 1995: Tutton & Seers, 2003).

PALLIATIVE CARE COMPETENCIES 12 4. Recognizing and responding to the unique end-of-life needs of various populations, i.e. elders, children, multicultural populations, those with cognitive impairment, those in rural and remote areas, those with chronic diseases, mental illness and addictions, and marginalized populations 5. Applying ethical knowledge skillfully when caring for persons at end of life and their families while attending to one s own responses such as moral distress and dilemmas and successes with end-of life decision making. 6. Demonstrating the ability to attend to psychosocial and practical issues such as planning for death at home and after death care relevant to the person and the family members. 7. Identifying the full range and continuum of palliative and end of life care services, resources, and the settings in which they are available (e.g. home care). 8. Educating and mentoring patients and family members on care needs, identifying the need for respite for family members, and safely and appropriately delegating care to other caregivers and care providers. 9. Demonstrating the ability to collaborate effectively to address patient/family priorities within an integrated inter-professional team, including non-professional health care providers (i.e. patient, family). Consistent with the goal of developing nursing competencies that support interprofessional care, we considered whether the final nursing PEOLC specific competencies could be grouped within the Core Inter-professional Competencies identified by the Canadian Strategy on Palliative and End of Life Care (CSEOLC) Education Work Group. The CSEOLC Education Work Group, an inter-professional group of palliative care educators, identified six core

PALLIATIVE CARE COMPETENCIES 13 competencies common to all health care professionals providing end-of-life care. The competencies developed by this group also resulted from a national consensus approval process. The six Core Inter-professional (IP) Competencies of the CSEOLC are: 1. Address and manage pain and symptoms, 2. Address psychosocial and spiritual needs. 3. Address end-of-life decision making and planning using a basic bioethical and legal framework. 4. Communicate effectively with patients, families, and other caregivers. 5. Collaborate as a member of an interdisciplinary team. 6. Attend to suffering. The specific PEOLC Competencies for Nursing reflect the core IP competencies and can be linked to them. The linkages between the two sets of competencies show the contributions of the role of nurses to the work of the inter-professional team. The linkages also create an important bridge between the outcomes of this project and the earlier inter-professional care initiative (See table 3). Limitations A limitation of this multi-step process has been the length of time it has taken to develop the specific PEOLC competencies. The iterations have strengthened the competencies, and the process itself has generated consensus but it has been lengthy. In addition, although there have been a considerable number of fruitful consultations as the competencies have evolved, a more robust response from schools and content experts in the national consensus building phase would have strengthened the results of this work. Intentional engagement of patient and family advocacy groups would have also strengthened this work as the perspectives of these stakeholders would have broadened the view of what knowledge, skills, and attributes comprise

PALLIATIVE CARE COMPETENCIES 14 competency in PEOLC from the perspectives of those in nurses care. In addition, we recognize that competencies and a competency approach to curriculum is not a panacea in addressing the PEOLC gap as nursing knowledge as a social construction is complex - we do not know what we do not know (Bowman, 2007). Nonetheless, this project provides a starting point for continuing dialogue about this critical component of nursing education and practice. Conclusion Members of the CASN Task Force have felt that the dialogue with each other and with colleagues from across the country has been an important national consensus-building process in itself. The Task Force is serving as an advisory committee on a follow up CASN project to foster the integration of the specific palliative and end-of-life care competencies into nursing curricula. The focus is on three key areas: the development of entry to practice indicators of the specific PEOLC competencies to facilitate their integration into educational programs, teaching and learning resources for faculty to facilitate the teaching and learning of the competencies, and the mobilization of curriculum development to incorporate the competencies., CASN is working with key stakeholders and interprofessional experts in the field in implementing this project with the ultimate goal of enhancing palliative and end-of-life care in Canada.

PALLIATIVE CARE COMPETENCIES 15 Table l: Environmental Scan of Specific PEOLC Competencies Addressed and Evaluated in Member Schools Draft Specific PEOLC Competency 1) Self-awareness of personal attitudes, beliefs, and values about death and dying 2) Knowledge and skill in assessing and managing complex pain and symptoms 3) Therapeutic communication skills and an ability to engage in end-of-life decision making and planning 4) Knowledge of cultural and spiritual issues and an ability to recognize and attend to meaning and suffering 5) An ability to assess and attend to individual/family psychosocial issues as well as practical concerns such as discharge planning 6) Evidence of an effective collaborative approach to care within an integrated, interdisciplinary, and intersectoral team 7) knowledge and skill in attending to ethical issues 8) Knowledge of the unique needs of diverse populations (i.e., elders, children, those with cognitive impairments) 9) Knowledge of grief and bereavement and the ability to support others while caring for oneself 10) Knowledge of principles and standards of palliative care in a culturally diverse Canadian context 11) Knowledge and skills in conducting holistic and family assessments Numbers and Percentage of Schools who Addressed the Competency N=51 42 (82%) 33 (65%) 35 (69%) 32 (63%) 35 (69%) 29 (57%) 38 (75) 29 (57%) 30 (59%) 26 (51%) 30 (59%) 21 (41%) 36 (71%) 31 (61%) 28 (55%) 25 (49%) 38 (75%) 33 (65%) 25 (49%) 18 (35%) 37 (73%) 33 (65%) Numbers and Percentage of Schools who Evaluated the Competency N=51

PALLIATIVE CARE COMPETENCIES 16 Table 2: Content Experts Agreement with the Appropriateness of the Revised Draft Specific PEOLC Competencies Specific PEOLC Competency 1) Possess self-awareness of personal attitudes, beliefs, and values about death and dying. It includes care of self, understanding one s one needs, developing one s own support and knowledge networks, being open to learning, and knowing how to be with suffering 2) Exhibit skill in conducting holistic individual and family assessments, including pain and symptom management 3) Demonstrate knowledge and skill in managing pain and symptoms 4) Possess requisite communication skills and an ability to engage in end-of-life decision making and planning and artfully and gracefully negotiate modes of care on an ongoing basis 5) Possess knowledge of cultural and spiritual issues and the ability to recognize and attend to meaning in suffering 6) Demonstrate ability to assess and attend to individual/family psychosocial and practical issues such as discharge planning 7) Shows evidence of an ability to collaborate effectively within an integrated inter-professional team 8) Possess knowledge and skills in recognizing and attending to ethical issues 9) Recognize and respond to the unique needs of special populations, i.e. elders, children, those with cognitive impairments, unique and marginalized populations 10) Demonstrate knowledge of grief and bereavement and the ability to support others 11) Demonstrate caring for self while supporting others in their grief and bereavement. Real compassion is uplifting and contributes to personal growth: unresolved grief causes pain which can contribute to fatigue. The nurse recognizes his or her limitations and issues that could contribute to burnout 12) Possess awareness of the full range and continuum of palliative/end-of-life services and the settings in which they are available 13) Educate and train patient and family on care needs, identify the need for respite for family members, and safely and appropriately delegate care to other caregivers Numbers and Percentage in Agreement 43/45 ( 95.6%) 40/45 (89%) 42/45 (93%) 39/43 (87%) 42/43 (98%) 38/44 (86%) 41/44 (93%) 39/41 (95%) 42/43 (98%) 41/42 (98%) 40/44 (91%) 42/43 (98%) 43/44 (98%)

PALLIATIVE CARE COMPETENCIES 17 Table 3: Inter-professional (IP) CSEOL Competencies vs. Palliative Care Competencies for Nurses The six Core Inter-professional (IP) Competencies of the CSEOLC 1. Address and manage pain and symptoms. 2. Address psychosocial and spiritual needs Palliative Care Competencies for Nurses Demonstrate knowledge and skill in holistic, family-centered nursing care of persons at end of life who are experiencing pain and other symptoms. Demonstrate the ability to attend to psychosocial and practical issues such as planning for death at home and after death care relevant to the person and the family members.. Recognize and respond to the unique end-of-life needs of various populations, i.e. elders, children, multicultural populations, those with cognitive impairment, those in rural and remote areas, those with chronic diseases, mental illness and addictions, and marginalized populations Educate and mentor patients and family members on care needs, identifying the need for respite for family members, and safely and appropriately delegate care to other caregivers and care providers. 3. Address end-of-life decision making and planning using a basic bioethical and legal framework. 4. Communicate effectively with patients, families, and other caregivers. 5. Collaborate as a member of an interdisciplinary team. Apply ethical knowledge skilfully when caring for persons at end of life and their families while attending to one s own responses such as moral distress and dilemmas and successes with end-of life decision making. Use requisite relational skills to support decision making and negotiating modes of end of life care on an ongoing basis. Demonstrate the ability to collaborate effectively to address patient/family priorities within an integrated interprofessional team, including non-professional health care providers (i.e. patient, family). Identify the full range and continuum of palliative and end-oflife- care services, resources, and the settings in which they are available (e.g. home care). 6. Attend to suffering. Demonstrate knowledge of grief and bereavement and the ability to support others from a cross-cultural perspective.

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