EVOLVING END-OF-LIFE CARE
An integral relationship between death and spirituality has been evident since the earliest recorded days. The biblical book of Genesis describes Jacob's spiritual preparations for his death. Surrounded by family, Jacob prayed, recalled his predecessors, and blessed his family members. Dying in one's home, surrounded by family, was the norm until the middle of the 20th century, when the advent of modern medicine greatly altered this trend. The place of death shifted to hospitals and nursing homes, with inadequate focus on pain and symptom management, and little consideration of emotional and spiritual needs (Puchalski & Ferrell, 2010). Death for many was occurring alone, in the midst of “ventilators, dialysis machines, isolation rooms, gowns, and gloves” (p. 29).
The 1960s brought imperative changes in the care of the dying. A prime motivating force for change was to reestablish the important connection between spirituality and end-of-life care (Puchalski & Ferrell, 2010). The founding of St. Christopher's Hospice in 1967, by Dame Cecily Saunders in the United Kingdom, heralded the modern hospice movement (National Hospice and Palliative Care Organization, 2014). The philosophy that emanated from St. Christopher's was a focus on pain and symptom management and a focus on the emotional and spiritual experiences specific to the dying.
The well-known SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) was a controlled trial in the mid-1990s to improve care for seriously ill hospitalized patients (Connors et al., 1995). Researchers identified poor communication between patients and their healthcare team at the end of life with respect to wishes and choices. The majority of Do Not Resuscitate orders were being written as little as 2 days before death. The study also identified high levels of pain during a large part of the dying process for most patients, and the location of death was taking place in an intensive care unit or hospital, rather than at home, where most patients preferred. The 1997 Institute of Medicine report, Approaching Death: Improving Care at the End of Life also found that many patients were unnecessarily dying in pain, and significant knowledge deficits among healthcare providers were common. As recent as 2002, the Last Acts Report affirmed these findings and added that finding good end-of-life care was not likely, while access to hospice and palliative care was occurring in too few situations (Pace & Lunsford, 2011).
NURSING EDUCATION CURRICULUM
Elizabeth Kubler-Ross's groundbreaking work entitled On Death and Dying was published in 1969 (National Hospice and Palliative Care Organization, 2014). The shifting paradigm resonated in the education of nurses, as major deficiencies in the teaching of content on death and dying were identified in a 1964 study conducted by Quint and Strauss (as cited in Dickinson, 2006). The need for change also was reflected by the Cumulative Index Medicus, the hard copy predecessor to the Cumulative Index of Nursing and Allied Health Literature or CINAHL and other computer-based search tools, with only 15 articles under the topic of “death education for nurses” during the 1960s (Dickinson, 2006).
Although the pendulum had begun to shift, resulting changes came slowly. In 1979, only 5% of nursing programs offered a required course in the care of the dying, and 39.5% provided this content only as an elective (Thrush, Paulus, & Thrush, 1979). Another study conducted in the mid-1980s found that 80% of baccalaureate nursing programs offered some content on care of the dying; 15% were offering a full-semester course. However, 5% were still offering no course work in death education (Dickinson, 1986). End-of-life nursing education in nursing programs increased, but several important events covering the next 20 years clearly indicated that the changes were not enough to meet the needs of dying patients.
Ferrell, Virani, and Grant (1999) reported that only 2% of the content in nursing textbooks contained material related to care of the dying. Some had none. Kirchhoff, Beckstrand, and Anumandla (2003) reviewed 14 critical care textbooks and found little content on end-of-life care. Three of the 14 texts had no end-of-life content. Pimple, Schmidt, and Tidwell (2003) wrote that “only a handful of nursing schools share a commitment to producing future nurses who are competent with the basics of the care for the dying” (p. 40). Alaniz (2000) found that half of the practicing nurses that he surveyed described their end-of-life education as insufficient (as cited in Dickinson, 2006, pp. 165). Caton and Klemm (2006) described end-of-life education as, at best, inconsistent. Spicer, Heller, and Troth (2015) also confirmed a historical deficiency in end-of-life nursing education.
NURSING EDUCATION ADVANCES
These dire reports of the late 1990s and early 2000s regarding care of the dying in the U.S. spurred nurses into action. An important response came from the American Association of Colleges of Nursing (AACN) in 1997, in the development of competencies and curricular guidelines. Comprehensive in nature, the intent of these guidelines was to weave end-of-life content into already existing courses, such as pharmacology, research, behavioral health, and health assessment. Initiation of the first master's level program in palliative care, spearheaded by Debora Witt Sherman at NYU in 1998, impacted advanced practice nursing. The next 10 years produced 14 other programs across the country (Pace & Lunsford, 2011).
The End-of-Life Nursing Education Consortium (ELNEC) is changing the landscape of educating nurses in end-of-life care. In response to the IOM report, under the leadership of the AACN and Betty Ferrell of the City of Hope Medical Center, a 12-hour “train the trainer” continuing education program was developed for practicing nurses in 2001 (Pace & Lunsford, 2011). ELNEC is a nine-module program, consisting of topics such as communication, pain management, symptom management, and ethics. Some nursing schools use this program in structuring their curriculum design. ELNEC celebrated a 10-year birthday in 2010 and can rightfully boast training more than 14,000 nurses and healthcare professionals from all 50 states and 70 countries in better end-of-life care for patients (Pace & Lunsford).
The National College of State Boards of Nursing (NCSBN) now includes topics such as End-of-Life Care, Grief and Loss, and Advance Directives in the NCLEX-RN test plan blueprint (NCSBN, 2015). These topics are based on 16 competencies relating to end-of-life care created by the AACN Peaceful Death task force (Pimple et al., 2003). The AACN deems these competencies to be “necessary for nurses to provide high-quality care to patients and families during the transition at the end of life” (AACN, 2014, para. 5). The NCSBN encourages state boards of nursing to create guidelines in the care of dying patients (Pimple et al.).
The Hospice and Palliative Nurses' Association (HPNA) revised their standards of nursing practice in 2000 in a document called the Statement on the Scope and Standards of Hospice and Palliative Care, which includes guidelines for education. HPNA developed various levels of certifications in hospice and palliative nursing, which extends the education of practicing nurses (Pace & Lunsford, 2011).
CHALLENGES IN NURSING EDUCATION
Despite the shift in the approach to preparing nurses to care for dying patients, many challenges exist for nurse educators. One of the most significant is how to include end-of-life content in an overloaded curriculum. Another problem is the lack of consistency in how end-of-life content is taught. About 18% of nursing programs offer end-of-life content as a separate course; most integrate this content into other courses (Dickinson, 2012).
The most common (94%) teaching method in programs is lecture, followed by a seminar/small group format (66%). Popular teaching methods employed come with the goal of providing live or simulated patient observations and interactions. These methods include role-play, videos, case studies, and visits to local hospices and/or terminal patient visits (Dickinson, 2012).
Simulation labs are gaining popularity and can be an effective teaching tool for both separate and integrated courses. Simulation utilizes a script where students and/or educators assume the role of nurse, student, patient, and family members. Debriefing and analysis of the dynamics occurring during the scenario are an important component of the simulation (Leighton & Dubas, 2009; Moreland, Lemieux, & Myers, 2012; Twigg & Lynn, 2012).
Other innovative approaches in the literature involve using an online community board throughout a program that integrates aspects of end-of-life content into each course. The online discussion board provides a link between courses and gives students a place to reflect on issues specific to end of life (Todaro-Franceschi, 2009). Kavanaugh et al. (2009) successfully designed a blended course. The first class session was a face-to-face meeting that involved viewing a video. Subsequent classes entailed online reflection and discussion of the text, journal articles, books and websites. The last class was again, face-to-face, where each student presented an evaluation of an evidence-based resource.
Another group of educators, working with honors nursing students, had students design curriculum for their end-of-life course. The students chose to invite end-of-life expert speakers to their class, keep a journal, attend a hospice orientation and patient home visit, and conclude the course with a remembrance ceremony that involved the creation of a multimedia collage and scrapbook, with contributions from each student (Birkholz, Clements, Cox, & Gaume, 2004). Welsh and Lowry (2011) wrote a play that modeled nursing behaviors in end-of-life care. Spicer, Heller, and Troth (2015) reported their success in teaching end-of-life content by including a 40-hour clinical as a component of the community health course. They monitored student response and feedback via weekly reflections. Various teaching methods can be utilized to share end-of-life content with students and make this a gratifying experience for educators. A goal of end-of-life nursing education is to produce nurses who are comfortable with death and dying, and who have had the opportunity to reflect on their thoughts and feelings on this topic. Non-textbook resources offer an excellent avenue to foster this outcome.
SPIRITUALITY IN END-OF-LIFE EDUCATION
One goal of end-of-life education is to create competent practitioners skilled in assessment, including spiritual assessment. Puchalski and Romer (2000) developed an assessment tool called FICA (F-Faith and Belief, I-Importance, C-Community, A-Address in Care) that specifically assesses a patient's spiritual status. The FICA tool determines a patient's faith perspective and the role and relationship of that faith to daily life and current illness. The existence and effects of one's faith community on health and well-being, and the expectations of healthcare providers in one's spiritual care is another component. The FICA is a crucial tool for all nurses, but especially the Christian nurse caring for dying patients.
Browning (2009) developed a comprehensive End-of-Life Care Decision Making GUIDE that incorporates spirituality into end-of-life care. GUIDE is an acronym for Gather data and identify any dilemmas; Utilize resources in identifying ethical and spiritual problems; Inform the patient and family of treatment options; Document decision(s). Give rationale; and Evaluate and modify plan of care (pp. 12-13). The questions on the GUIDE incorporate assessment of spiritual and religious beliefs.
RECOMMENDATIONS FOR FUTURE EDUCATION
Few reports have been published on evaluation of the most effective teaching methodologies of end-of-life content (Barrere, Durkin, & LaCoursiere, 2008; Wallace et al., 2009). Evaluation of best teaching practices is especially important, due to the variety of approaches and amount of time spent teaching end-of-life content across nursing programs. Evaluation for end-of-life content might employ measurement tools such as the Revised Death Anxiety Scale (RDAS) and the Frommelt Attitude Towards the Dying Scale (FATCOD) (Frommelt, 1991; Thorson & Powell, 1992).
Thompson (2005) examined an elective, 4-month course designed for RN-BSN students and found a 30% increase in comfort level for those students in caring for the dying. Wallace et al. (2009) evaluated sophomores and seniors taught with an integrated curriculum design and found significant differences in scores reflecting comfort level with end-of-life content between the two groups, demonstrating the effectiveness of their approach. Halliday and Boughton (2008) found death experience decreased levels of death anxiety for older (50 plus) students and younger males (16-25 years) but actually increased death anxiety for both men and women ages 26 to 49 and women ages 16 to 25. Barrere et al. (2008) found that an end-of-life course for individuals in the 18-22 age-group in their study who had little experience with death and dying demonstrated the greatest changes in attitude toward the dying. The inconsistencies in the valuation studies that do exist reflect the need for evaluation of effective teaching methods of end-of-life content.
Specific suggestions for the future education in end-of-life care include nurse externships, tailor-made orientations, and thoughtful selection of expert mentors and preceptors. Continuing education for practicing nurses in end-of-life issues is a crucial component of providing the best care to patients (Caton & Klemm, 2006).
Nurse educators need to decide on whether content will be communicated via a mandatory, elective, integrated, or full-semester course. Curriculum can be structured around the AACN's competencies or the ELNEC curriculum. Once the course format and curriculum foundation are selected, teaching modalities, such as journaling, reflection papers, classroom speakers, and simulations must be determined. Approaches to evaluate the effectiveness of courses and methods used for teaching content are best decided at inception. Josephson and Martz (2014) surveyed nurse educators and found that the teaching of end-of-life content was valued by most faculty. Educators need to ensure that the teaching of end-of-life care is a priority, by not only keeping this topic in the forefront during curriculum discussions, but also by disseminating experiences and findings at nursing conferences and in nursing journals. These crucial steps will promote the best end-of-life education for undergraduate nurses, resulting in the best end-of-life care for dying patients and their families.
Nurses are witnesses to some of the most vulnerable and sensitive events in patients' and families' lives. End of life is one of those events. Competent, compassionate, and effective end-of-life care is a crucial competency for nurses. Scripture states, “Precious in the sight of the LORD is the death of his saints” (Psalm 116:15, NIV). Psalm 23 offers much consolation to patients at the end of life. “Even though I walk through the valley of the shadow of death, I fear no evil, for you are with me” (Psalm 23:4, NIV). Expert end-of-life care enables patients to cope with the burden of pain and uncomfortable symptoms and gives them capacity to experience their spirituality to the fullest. The dying experience is forever carried in the life story of those for whom the nurse cares. Schools of nursing and continuing education have the vital role of providing the knowledge and skills needed to give the best care possible at the end of life.
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