Ninety million people in the United States are currently living with a serious, life-threatening illness, and that number is rising as more medical treatments become available for chronic illnesses.1 Although patients are living longer, many are suffering with the physical pain and symptoms associated with serious illnesses, as well as psychological, social, and spiritual issues.2 Twenty percent of Medicare beneficiaries have 5 or more chronic illnesses, adding to the complexity of care.1 In addition, there are more than 2.5 million people in the United States expected to die this year who need quality end-of-life (EOL) care.3
Patients suffering with the physical pain and symptoms associated with serious illnesses benefit from receiving palliative care. The term serious illness, also known as life-limiting illness, is commonly used in the specialty of palliative care.2,4-6 It refers to the myriad of chronic, life-limiting diseases and conditions that are not curable but are controllable. Examples of serious illnesses include heart failure, chronic obstructive pulmonary disease, dementia, and cancer. These diagnoses and conditions can negatively impact the patient’s quality of life and add burden and suffering to families caring for them.2,7
Palliative care is “specialized care focused on the management of physical psychological, social, and spiritual needs of patients and families experiencing serious illness.”5 It can be delivered in conjunction with disease-oriented care and is best provided across the illness trajectory, from diagnosis through end of life and family bereavement.2,7 Palliative care is provided by an interdisciplinary team and is increasingly available in acute care and outpatient care settings, home care, and institutional care.5,7
The demand for specialty palliative care far outweighs the supply of specialty providers.2,5,8 Thus, there is a need for all health care professionals, especially nurses, to be educated to provide primary palliative care.5 Primary palliative nursing care encompasses evidence-based pain and symptom assessment and management, skill in holding advance care planning discussions, and comfort and expertise in caring for those at end of life.5 Evidence supports the importance of educating all nurses in primary palliative nursing to care for the millions of patients with serious illness and their families, across all clinical settings.9,10
Primary Palliative Nursing Education
Although there has been a national effort to improve palliative care education for nurses and physicians since the late 1990s, much work remains to be done to achieve quality palliative care as outlined in the National Consensus Project (NCP) Guidelines for Quality Palliative Care.4 The findings of the 2014 Institute of Medicine report, Dying in America,9 demonstrate the need for more professional education, especially in areas of primary palliative care, such as communication and advance care planning for those with serious illness and their families. Many practicing nurses continue to have little or no education during their nursing education programs.11,12
There has been a significant movement to improve palliative nursing education, most notably by the End-of-Life Nursing Education Consortium (ELNEC) Project.6 The ELNEC project began in 2001 with a focus on educating nursing faculty in palliative care and then expanded its education to prepare practicing nurses. To date, the ELNEC project has educated more than 21 500 ELNEC trainers who have gone on to educate more than 642 000 nurses and other interprofessional health care providers in all 50 states of the United States and 91 countries internationally.6 Many of these nurses are providing specialty palliative nursing on palliative care teams in acute care settings, outpatient settings, and community hospice programs.
Despite the initial efforts to prepare faculty from schools of nursing, many nursing programs have not incorporated palliative nursing content into their curricula. This is in part because there is limited faculty with expertise in palliative care to teach this content.11,12 Another major barrier to integrating palliative nursing reported by faculty is the limited space available to add additional content into saturated curricula.11,12 Despite these barriers, it is critical that all schools of nursing prepare prelicensure nursing students to provide the essential skills of primary palliative care. These essential skills include assessment and management of pain and symptoms associated with serious illness; support to patients and families during complex health care decision making and transitions of care; compassionate, evidence-based EOL care to dying patients; and bereavement care to those grieving. In addition, quality primary palliative nursing requires the skills to work collaboratively with the interprofessional team in advocating for and supporting patients’ goals of care.
Assessing the Gaps in Palliative Nursing Education
In July 2015, the ELNEC Project was awarded a generous Cambia Health Foundation Grant to improve undergraduate nursing education in palliative nursing. The 3-year project has 3 phases: (1) an assessment of the current state of palliative nursing; (2) a summit to convene nursing experts to revise the 1998 American Association of Colleges of Nursing (AACN) Peaceful Death 13 document, which has been used as a framework to guide nursing education in the past; and (3) the development and implementation of a curriculum that meets the competencies of the AACN CARES14 (Competencies And Recommendations for Education Undergraduate Nursing Students) Document. The AACN CARES14 document defines the competencies of primary palliative nursing, which all prelicensure nursing students should be able to meet by the time of graduation. The primary nursing competencies align closely with the NCP Guidelines for Quality Palliative Care.4
Phase 1: Assessment of Current State of Palliative Nursing Education
During phase 1, to understand the current state of palliative nursing education in undergraduate nursing programs, the project team examined the quantity and quality of palliative and EOL care information in current, basic nursing textbooks and surveyed faculty perceptions of student preparedness in palliative care. The team found that 18% of 10 735 textbook pages reviewed and 17.5% of 411 chapters reviewed addressed the key palliative and EOL care topics.11
To explore faculty perceptions of student knowledge, an investigator-designed questionnaire was developed by the ELNEC team and distributed to nursing faculty attending national ELNEC courses in 2015. The 71 nursing faculty members who voluntarily completed the questionnaires represented 33 US states. The questionnaire contained 12 items, which helped to identify the presence and strength of palliative care content in prelicensure programs of those participating in the survey. When asked to rate their responses on a scale of 0 to 10 (with 10 being most prepared) as to how prepared faculty members believed their nursing students were at graduation in 8 key palliative care content areas of the NCP Guidelines for Quality Palliative Care,4 the average preparedness was 5.4.
Phase 2: Developing New Competencies for Prelicensure Education
The second phase of the project was to develop competencies in primary palliative nursing and EOL care for prelicensure nursing students. The team invited 25 national nursing leaders, representing palliative nursing and academic health care institutions, to participate in a 2-day summit to revise the AACN Peaceful Death 13 document and begin discussion about key concepts for the development of an innovative online undergraduate nursing curriculum that could be used by all schools of nursing. The AACN CARES14 document was created at the summit and approved by the AACN Board of Directors for release in February 2016. The 17 competencies are available as Supplemental Digital Content 1, http://links.lww.com/NE/A446, Table 1.
Phase 3: Developing a Prelicensure Curriculum in Palliative Nursing
The third phase involved developing and implementing a curriculum to address the gaps in nursing education and to meet the new competencies outlined in the AACN CARES document.14 The ELNEC team decided that an online curriculum would be the best way to meet the needs of all prelicensure nursing programs based on faculty recommendations and known barriers to teaching palliative nursing content.11,12
The benefits of offering nursing schools an online curriculum are numerous. First, a completely developed online curriculum allows schools in areas where faculty palliative care expertise is limited to offer their students the needed education, containing evidence-based content and videos with national palliative nursing leaders demonstrating essential skills in palliative care. Second, because many schools reported adding or increasing distance learning opportunities, an online curriculum can augment their learning opportunities in a format that is user-friendly for faculty and students. Third, programs that enroll geographically diverse students in online courses appreciate having a curriculum that can be offered 24/7. Fourth, an online curriculum alleviates any burden associated with adding classroom content, which is important to faculty who are teaching in content-saturated courses. By designating the modules as course assignments, faculty do not have to alter course content or lectures to make room for the palliative nursing content. Most importantly, this new online curriculum ensures that all nursing programs can confidently prepare their students to meet the primary palliative nursing competencies outlined in the AACN CARES14 document (Supplemental Digital Content 1, http://links.lww.com/NE/A446, Table 1).
The ELNEC project team developed the ELNEC–Undergraduate Curriculum in using a learning management system. This curriculum is appropriate for all prelicensure nursing students. The curriculum is composed of six 1-hour modules. Text is limited to keep the content engaging, and each module includes case studies with critical-thinking reflection, testimonials from national palliative nursing leaders, brief videos demonstrating key palliative nursing skills, and 2 to 3 nursing licensure examination–style questions woven throughout. The modules are adapted from the ELNEC-CORE Curriculum, modified to meet the needs of the nursing student who is fairly new to clinical practice. The module topics and objectives are listed in Supplemental Digital Content 2, http://links.lww.com/NE/A447, Table 2.
At the end of each module, the student is required to complete a 10-question quiz with nursing licensure–type items. Mastery is 80%. If the student is not successful, the questions are scrambled, and the student repeats the quiz until mastery is achieved. At the completion of all 6 modules, students are able to print out a certificate for their portfolios documenting successful completion of this ELNEC curriculum.
Module 1: Introduction to Palliative Nursing
The first module emphasizes the philosophy and principles of hospice and palliative care. Palliative care is interdisciplinary care that “focuses on improving quality of life for persons of any age who are living with any serious illness and for their families.”2 Palliative care can be provided while patients receive disease-focused treatments and can be initiated at the time of diagnosis. Hospice care, on the other hand, is a system of interdisciplinary care offered to patients who have 6 months or less to live, if the disease takes its normal course.2
Similarities and differences between the two help the student understand when it is appropriate for patients to receive this type of care. For example, the module content stresses the importance of offering palliative care to patients with serious illness and their families, from the time of diagnosis of serious illness, throughout the disease trajectory, to end of life. Students learn their nursing role on the interprofessional team with the help of video clips and a testimonial from a national palliative nursing leader, who emphasizes the importance of advocating for quality palliative and hospice care for patients with serious, chronic illness and their families.
Module 2: Communication in Palliative Nursing
This module helps the student learn the value of the power of presence and the art of listening.14 Both skills are critical in caring for all persons with serious illness. Many students, and even practicing nurses, are fearful of talking about death and dying to patients and families or are unprepared to have conversations about goals of care with patients.15 This module uses role-modeling videos to teach them how to hold these conversations. Critical-thinking questions follow after each video segment.
Module 3: Pain Management
The module on pain management focuses on preparing the student to do a thorough pain assessment, communicate the assessment to the patient’s care provider with appropriate detail, and advocate for good pain management. Pharmacologic and nonpharmacologic approaches are emphasized. The students learn how to advocate for the appropriate pain intervention, the importance of accurate dosing calculations of opioids, and how to teach their patients about preventable adverse effects, especially of opioids. During video segments, bedside nurses role model a pain assessment with patient actors, communicating the assessment to the physician, and providing compassionate care to the patient suffering with pain.
Module 4: Symptom Management
During this 1-hour module, students learn about the most common symptoms in palliative care. The emphasis is on nursing assessment and advocacy for appropriate pharmacologic and nonpharmacologic management. Symptom severity and its impact on quality of life are stressed. Symptoms presented include dyspnea, nausea and vomiting, fatigue, and depression.
Module 5: Loss, Grief, and Bereavement
Module 5 is designed to help the student understand the importance of assessing grief in patients and family members, especially assessing for anticipatory grief and complicated grief, and intervening appropriately. A powerful video from a metastatic breast cancer couples retreat16 allows the students to see firsthand the grief of patients and families facing terminal illness.
The second component of this module addresses the importance of attending to the nurse’s grief, with an emphasis on self-care. Students are taught that it is as essential to take care of themselves as it is to care for their patients and families. Strategies to prevent compassion fatigue and burnout are described, and the student is encouraged to establish self-care activities that care for their physical, psychological, social, and spiritual well-being.
Module 6: Final Hours of Life
The last of the 6 modules, Final Hours of Life, focuses on care of the patient who is actively dying and the patient’s family. Physical signs and symptoms are discussed, and nursing interventions for comfort and support are emphasized. Testimonials from nursing leaders in palliative care address the important role of the nurse at this most sacred time. Care of the body and compassionate care of the family help prepare the student to provide the best nursing care possible during this difficult time. “The Pause,”17 a YouTube video, is embedded in the module to help students understand the importance of taking a moment to honor the person who has just died at the time of death and taking a “pause” as a health care team to grieve the loss together. The Table provides a summary of the content in the ELNEC modules.
More than 100 nursing programs have accessed the curriculum, and more than 10 000 modules have been completed by students and faculty during the first 6 months of the release of the curriculum. Some schools are implementing the curriculum across spring and fall semesters; therefore, not all students have completed the entire 6 modules to date. There have been 1700 total curriculum completions, and all students have achieved mastery, with an average score of 90.13% for all modules.
At the end of each module, students are asked to respond to 13 evaluation questions. Eight quantitative questions are rated on a 4-item Likert scale from strongly disagree to strongly agree. The students evaluate the modules based on items such as how relevant the content was to their profession and if the activities and interaction in the modules enhanced the effectiveness of their education. In the first 6 months, combined responses of strongly agree and agree for each question averaged 99%. Additional information about the students’ perspectives on the modules is addressed in qualitative questions, which ask students how the learning will change their practice and what other information they would like to see included in module revisions. Students have commented on the value of the ELNEC course in preparing them with “the tools to communicate as I took care of patients and their families during the moments leading up to and through their deaths” and “many different techniques and ways to help care for the patient and family during this difficult time.” A formal analysis of the entire curriculum will be completed in 2018.
The process of developing an online curriculum was challenging because of the sensitive nature of the content and the affective domain it addresses. It was as important to teach evidence-based practices as it was to role model presence and compassion. We wanted to make sure that the content was not only delivered by text, but also that the key concepts of primary palliative nursing were demonstrated through role-modeling skills, behaviors, and thought-provoking case studies. The team also wanted to interject testimonials from the palliative nursing experts across the country, so that students, who are reading the experts’ work in class assignments, would be inspired to hear the passion and wisdom of these leaders. Emotionally laden concepts such as loss and grief and final hours of life have been taught with powerful videos and reflective critical-thinking questions. These videos address the art of palliative nursing: compassion, caring, and empathy.
Evaluations and communication with faculty have indicated that the students are grateful to have this important nursing content and are feeling more prepared to care for patients and families, especially at the end of life. We have learned that, as expected, the content and the videos/clips evoke strong emotions. We are encouraging faculty using the curriculum to make sure that students who are viewing these modules online have access to faculty overseeing the modules should students need emotional support. Many students have not experienced death, either with their patients or within their family circle, and may find some of the videos and content difficult to experience without debriefing and support. This can be done in class, during office hours, or online in chat rooms or discussion boards monitored by the faculty.
The online ELNEC curriculum for prelicensure nursing students prepares students to integrate the art and science of primary palliative nursing into their professional practice, regardless of the nursing specialty they chose after graduation. The curriculum meets the recommended AACN CARES14 document’s 17 competencies for primary palliative nursing while easing the previously reported faculty burdens and challenges to teaching this content. Initial evaluations have demonstrated that the curriculum has been well received by students and faculty.
Faculty have the privilege and responsibility to educate our future nurses, the most trusted professionals in the United States. New graduates must be prepared to provide excellent palliative care across the life span to patients with serious illness and their families, from diagnosis through end of life. The new online ELNEC–Undergraduate Curriculum18 supports faculty in this responsibility and prepares nursing students to provide quality primary palliative care. Our next generation of nurses now has the ability to graduate with a strong foundation in primary palliative care and will be prepared to meet the challenges of a growing population of patients and families facing serious illness.
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