The rising average life expectancy and subsequent escalation in serious illness prevalence has major implications for our health care system.1-3 Serious illness brings a need for physical, psychosocial, emotional, and spiritual support. Palliative care addresses these holistic needs and aims to promote quality of life through the relief of pain and suffering throughout the illness trajectory, including dying, death, and bereavement.4 Clinical nurses are in a crucial position to provide primary palliative care, advocate for their patients and families at the end of life (EOL), and collaborate with the care team to optimize quality of life and contribute to enhanced symptom management. This relationship goes beyond clinical skills and simply symptom management, providing an approach to palliative care that is meaningful to patients and families on a more holistic level.
Despite the importance of this role, nurses are not always prepared to deliver quality palliative and end-of-life care. While palliative care education has recently been implemented into the undergraduate curriculum,3,5-7 most clinical nurses have not received comprehensive palliative care training.5,8,9 In their report Dying in America, the Institute of Medicine recommends that health care delivery organizations provide education and training so that all clinicians who care for people with advanced serious illness are competent in basic palliative care, including communication, interprofessional collaboration, and symptom management.2 The End-of-Life Nursing Education Consortium (ELNEC) curriculum can bridge these gaps by providing nurses with the knowledge needed to promote palliative care and to develop educational programs for nurses.5,6,10 The End-of-Life Nursing Education Consortium is a national educational program that was developed to advance nursing knowledge and practice in palliative care.11 The ELNEC curriculum can be used by trained providers to implement palliative care education for nurses at their own institutions. Bringing this education to nurses in various settings will better prepare them to provide quality palliative and end-of-life care for patients and families. The purpose of this article is to describe the process used by one medical center to enhance clinical nurses' palliative care knowledge and skills using the ELNEC curriculum as a foundation for unit-based palliative care education.
Nurses are in a unique role to provide primary palliative care. Palliative care spans all care settings, and nurses have an integral role as they often spend the most time with patients and families. As a result, nurses regularly coordinate communication between the patient, family, and providers and provide education and support to patients and families. Patients and families identify communication as a key element of palliative care,12 and the involvement of nurses in this communication has been shown to be directly related to the quality of end-of-life care.3 Research indicates that nurses are intimately involved in the care of patients and families and are often the first to observe troubling symptoms.12 They are present for difficult conversations about prognosis and goals of care and are also there for support after bad news is given and beyond.13 Through this unique responsibility, nurses have frequent opportunities to advocate for their patients and assist them in decision-making.2,3,13-15
The need for palliative care and end-of-life education, training, and support is well-documented in the literature.1-3,12-14 A general lack of knowledge has been reported by nurses in several domains of palliative care, including palliative care philosophy and principles, pain and symptom management, and transitions from curative to comfort care.1,3 Despite being involved in difficult conversations, nurses continue to report a lack of confidence in communication with seriously ill patients and families, as well as the interdisciplinary team.3,12,15
A delay in providing early palliative care, specifically involvement of the palliative care team for symptom management, and preparation for end-of-life care has been viewed by nurses as suboptimal care.16,17 This perception of suboptimal care can result in moral distress, decreased coping skills, and physical symptoms. Ethical dilemmas related to balancing medication administration, feelings of hastening death, and conflicting goals of care within families and the health care team contribute to their distress.17,18 Nurses have also expressed feelings of hopelessness, depression, and emotional suffering when providing end-of-life care, particularly when family members deny the reality of a patient's prognosis.14 Further, nurses dealing with unrelieved patient suffering have experienced physical symptoms, such as poor sleep, headaches, digestive problems, and back pain.19 Palliative care education and resources can help to prevent and diminish nurses' distress in caring for seriously ill patients and their families throughout the illness trajectory and at EOL.
Preparation for ELNEC Education
Five nurses from a large, metropolitan, academic medical center were invited to attend an ELNEC train-the-trainer program. The nurses were selected by an ELNEC train-the-trainer faculty based on their expressed interest in palliative and end-of-life care. The cohort consisted of 2 clinical nurse specialists, 2 unit-based educators, and 1 clinical staff nurse. The 2 clinical nurse specialists represented 2 inpatient general-medicine units with 23 and 44 beds and 2 inpatient surgical units with 20 and 23 beds, respectively; 1 unit-based educator represented a 16-bed neuroscience intermediate unit, and the other represented a 12-bed medical intensive care unit; a clinical nurse represented an 8-bed cardiac care unit. Nurses from all of the pilot units frequently care for seriously ill patients and families with complex physical, psychosocial, and spiritual care needs during hospitalization and at EOL. This complexity of holistic needs requires nurses to be knowledgeable and comfortable in participating in goals-of-care discussions and advocating for patients and families to receive care aligned with their values and end-of-life care preferences. The goal was to have these 5 nurses become ELNEC trainers and become palliative care educational leaders on their units and within the medical center. This educational plan was supported by nursing administration, and the 5 nurses received reimbursement for their ELNEC train-the-trainer participation through the medical center's professional development fund. Following completion of the ELNEC program, the cohort along with an ELNEC faculty member met to design an education plan that would provide clinical nurses with core palliative care knowledge and skills needed to serve as patient/family advocates throughout the serious illness trajectory and at EOL. The palliative care educational leaders and faculty member agreed to review the ELNEC materials independently and meet twice a month to refine content and develop the educational program.
Prior to developing the educational program, it was important for the team to gain baseline data on gaps in the clinical nursing staff's palliative care knowledge, needs, and confidence. A needs assessment to evaluate nurses' knowledge and perceptions of palliative care was conducted electronically using SurveyMonkey. The survey consisted of a series of demographic questions and the End-of-Life Professional Caregiver Survey (EPCS). The EPCS is a validated tool for the assessment of educational needs of nurses, physicians, and social workers caring for patients and families at the EOL.20 The EPCS survey tool consists of 28 items that address 6 domains: clinical knowledge and technical skills; communication and interpersonal skills with patients, families, and other providers; spiritual and cultural needs; ethical, professional, and legal concerns; organizational and care coordination; and attitudes, values, and feelings of health care providers.20 Participants were asked to rate the EPCS items on a modified 5-point Likert scale (1 = not at all, 5 = very much). Three additional open-ended items were added to the needs assessment to help structure the educational sessions: What do you feel would be beneficial to help support you as you care for patients at the EOL? Please describe specific challenges you have encountered in providing end-of-life care. Please include any other comments you'd like to share.
The survey was completed by 335 nurses (24.4% response rate) from all inpatient units within the medical center. Fifty-six percent (n = 188) of respondents reported not having received any form of palliative care education. In addition to a general lack of education, survey results revealed specific educational needs that were subsequently mapped to the interrelated modules of the ELNEC curriculum.11 The 6 identified needs were introduction to palliative care, communication, pain management, symptom management, ethical issues, and loss, grief, and bereavement.
In designing ELNEC education for our institution, clinical staff needs, time, and accessibility/ease of completion were major considerations. Options of a 1-day 8-hour workshop or a series of unit-based small group sessions were discussed. The dynamics of the 6 pilot units (a medical intensive care unit, a neuro intermediate care unit, 2 medical floors, and 2 surgical floors), as well as clinical nurses' feedback, was used to determine the best format and timing for the palliative care educational sessions. The high patient acuity and the subsequent complexity of care within the medical center often preclude nurses from leaving the unit for an extended period of time during their work day. Additionally, educational sessions held off the unit and full-day workshops require advanced scheduling and incorporation into the monthly staffing schedule to ensure adequate staffing numbers. Clinical nurses, instead, suggested and expressed a preference for brief, on-unit educational sessions in the provision of formal education. The clinical nurses also recommended that the educational sessions be held during their scheduled lunch breaks and be held in the unit conference rooms, as this would be less disruptive to patient care and would not create more work for coworkers in covering their patients for an extended period. Brief on-unit education would enable nurses to attend the sessions without disruptions in direct patient care and their daily workflow.
Based on unit needs, clinical nurses' preferences, and previous experience with staff education, it was decided that a 20- to 30-minute conversation-based format would work best in meeting the clinical nurses' educational needs. The anticipated advantage of small, brief, on-unit sessions was the ability to have more intimate and personal conversations with and among the clinical nurses and staff. The palliative care educational leaders and the faculty leader each selected and developed content for 1 of the 6 educational sessions using the ELNEC curriculum7 as a resource and guide. The educational sessions were subsequently named Palliative Care Conversations to emphasize their conversational nature and promote dialog with and among the participants. The teaching methodologies were varied to both address the complexity of topics and provide the clinical nurses with practical approaches to palliative care clinical practice. Educational strategies included didactic instruction, case studies, film clips, and role play.
Palliative Care Conversations
The first session of Palliative Care Conversations provided an overview of palliative care nursing. Definitions of and differentiation between palliative care and hospice care were discussed using a brief PowerPoint. Characteristics of palliative care philosophy and care delivery, barriers to quality palliative care, lessons learned in managing barriers, and the role of clinical nurse in improving palliative care were emphasized as these topics were commonly identified by the nurses in the needs assessment. This session served as the foundation for subsequent Palliative Care Conversation sessions.
Initially, the communication session was designed using key PowerPoint segments from the ELNEC training manual. In further discussion, the palliative care educational leaders felt that end-of-life communication is an area that many nurses struggle with and want more guidance in having these conversations with patients and families. The decision was made to use a movie clip, “The Popsicle” scene from the movie Wit.21 In this scene, the nurse discusses options that the patient may face in the future, including a discussion of the meaning of “full code” and “do not resuscitate” to the patient and family. The movie clip was used to stimulate discussions on the nurses' perceptions of the nurse-patient interaction and ways to improve communication.
Pain management was covered separately from other symptoms because of its complexity. This third session began with a discussion of barriers to pain relief, goals of pain management, pain versus suffering, pain assessment, and populations at risk of undertreatment of pain. While nonopioid and adjunctive therapies were addressed, the majority of time was spent on opioid management. Nurses throughout the medical center have expressed a lack of understanding regarding opioid management; therefore, use of p.r.n. opioids versus opioid infusions was explored, in addition to the nursing assessment and management of an infusion. Nonpharmacologic therapies were also discussed. This session concluded with a case study, followed by a discussion of assessment findings and pain management options based on the presented case.
Symptom management was developed as the fourth educational session for Palliative Care Conversations. Because of the large number of symptoms to manage and the desire to keep sessions brief, it was decided to focus on 4 major symptoms: dyspnea, constipation, diarrhea, and nausea/vomiting. Causes, assessment, and treatments were discussed for each symptom in further detail. Participants were encouraged to share their own experiences in the management of these symptoms in order to promote peer-to-peer learning. An institutional guideline for interdisciplinary comfort-focused end-of-life care, which includes symptom management, was highlighted for future reference in the care of this population.
The final 2 sessions focused on ethical issues and loss, grief, and bereavement, respectively. The ethical issues session consisted of a review of the ethical principles of autonomy, beneficence, nonmaleficence, and justice, as well as the standards of professional nursing practice. Case studies based on ethical dilemmas encountered in clinical practice were used to stimulate discussion, address concerns, and identify strategies for ethical decision-making. The last session of the Palliative Care Conversations focused on the bereavement process for and needs of patients, families, and self during serious illness, dying, and postdeath. This session included a discussion of the types and stages of grief, biopsychosocial-spiritual factors influencing the grief process, bereavement interventions, and self-care strategies. The session concluded with a breathing/meditation exercise.
Thirty-two clinical nurses from the 6 pilot units have attended the sessions to date. An average of 5 clinical nurses (range, 3–6 clinical nurses) attended each Palliative Care Conversations educational session on their home units. Educational sessions continue to be offered monthly. All nurses who attended the educational sessions completed a brief posttest evaluation for each session. Each posttest consisted of 2 knowledge questions related to the session content and 2 statements related to their self-assessment of increased knowledge of and comfort with the content from the session. Knowledge questions for each posttest consisted of true/false and/or multiple-choice answers. Self-assessment of increased knowledge and comfort was rated using a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree). The nurses were also asked to share key “take-away concepts” and any comments about and/or suggestions for improving the educational sessions. All of the nurses who participated in the educational sessions answered all of the knowledge questions correctly. Average Likert scale rating of increased knowledge was 4.57, and average Likert scale rating of increased comfort was 4.34. In their open-ended comments, 4 identified needs emerged: assessment of patients' and families' knowledge and feelings prior to starting a palliative care conversation; education through role play and mock conversations; development of policies and procedures for consulting palliative care; and support through debriefing and check-ins on each other's emotional health. Comments directly related to educational format were overwhelmingly positive, for example, “I appreciate that we are having this discussion,” “I loved that it stayed to 20 minutes,” “There was not an overwhelming amount of information, which was great,” “I like that it was broken down into sessions,” and “I loved it, I learned a lot.” These positive outcomes and affirmations support the need for ongoing, brief educational session that build upon and increase the nurses' knowledge and comfort with primary and specialized palliative care.
Opportunities and Challenges
A number of opportunities and challenges were encountered in the development and implementation of the Palliative Care Conversations educational sessions. To ensure consistency in the educational sessions, PowerPoint presentations, session outlines, and conversation points were developed and placed on the institutional shared drive for the palliative care educational leaders to access. Brief posttest surveys for each session were also developed to assess for an increase and retention of knowledge following the educational sessions and the nurses' self-perception of increased knowledge and comfort with palliative care. All educational sessions were well-received by the clinical nurses, and areas for continued education and dialog related to the discussed topics were identified. Tip sheets and conversation points were distributed to clinical nurses in attendance and are available on the units for nurses who were unable to participate in the educational sessions. An increase in palliative care-related discussions and conversations was noted among all staff on the pilot units following the educational sessions.
Despite the success of this program, the scheduling and timing of the Palliative Care Conversations educational sessions were a consistent challenge. It was initially decided to hold 1 topic session multiple times per month on each unit. Because of increased census and patient acuity, it was sometimes difficult for staff to attend a session on their own units during the scheduled time. The decision was then made to conduct “impromptu” sessions when there was a lull on the unit and to offer sessions in conjunction with the other pilot units to increase accessibility for staff.
An additional challenge was the format and timing of the sessions. As noted, sessions were kept to a 20- to 30-minute conversation-based format. Although the initially designed PowerPoint presentations were limited to 5 to 8 slides and continue to serve as great resource, palliative care content requires thoughtful discussions, reflection on past experiences, and, at times, recognition of emotional disquietude. It was further recognized that the sharing of these experiences cannot be rushed. Therefore, the structured portion of the educational sessions was limited to 5 to 10 minutes, and the majority of time was focused on applying each specific session's content to actual clinical issues and patient/family concerns encountered. Additionally, there were distractions when the educational sessions were held on the unit, as opposed to separating staff from the tasks and interruptions of the shift. Despite these difficulties, staff continue to appreciate the education being held on the units during lunch break or at a convenient time during their work shift. The offering of the same educational session at multiple and various times throughout the month allowed staff to leave and rejoin sessions or attend the same session more than once. The clinical staff, regardless of ability to attend the educational session, found the tip sheets developed for each session to be a quick reference and a valuable resource to reinforce key information from the educational session.
Educational sessions will continue to be offered and evaluated throughout the year on the pilot units. Evaluations and follow-up with clinical staff will be used to inform and refine future Palliative Care Conversations educational sessions. The goal is to have the majority of nurses on the pilot units attend the educational sessions and spread these brief 20- to 30-minute educational sessions to other units within the institution over the next year. Additional sessions will be developed and implemented to build upon foundational knowledge received in the initial educational sessions. The provision of nursing education contact hours for participation in each of the educational sessions is being explored. A full-day ELNEC workshop will be offered at the institutional level and a plan to train nurses to become unit-based palliative care champions and lead the educational sessions will be developed.
Palliative and end-of-life care issues are often difficult and complex. A comprehensive interdisciplinary approach to providing palliative care for patients facing advanced serious illness has been shown to improve quality of life, help with symptom management, and facilitate the understanding of choices for treatment options.22 Patients and families require an immense amount of physical, psychological, spiritual, and social support during this time. Nurses spend the most time with patients and play a vital role in meeting patients' and families' holistic care needs throughout serious illness. However, nurses often lack the education and training required to provide quality palliative care. Nurses at our institution identified a need for more education and support related to palliative and end-of-life care. After a group of 5 nurses from our institution attended an ELNEC train-the trainer program, an educational program entitled “Palliative Care Conversations” was developed to address identified gaps in knowledge. The educational sessions were well-received by nursing staff, and additional sessions are planned to continue to increase their knowledge and comfort in palliative care.
The authors thank the clinical nurses for their generous contributions of time and experience in participating in the educational sessions, Palliative Care Conversations.
1. Achora S, Labrague LJ. An integrative review on knowledge and attitudes of nurses toward palliative care: implications for practice. J Hosp Palliat Nurs
2. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. https://www.nap.edu/read/18748/chapter/1
. Published March 2015. Accessed August 12, 2020.
3. Price DM, Strodtman L, Montagnini M, et al. Palliative and end-of-life care education
needs of nurses across inpatient care settings. J Contin Educ Nurs
4. Ferrell BR, Paice JA, eds. Oxford Textbook of Palliative Nursing
. 5th ed. New York, NY: Oxford University Press; 2019.
5. Ferrell B, Malloy P, Mazanec P, Virani R. CARES: AACN's new competencies and recommendations for educating undergraduate nursing students to improve palliative care. J Prof Nurs
6. Smothers A, Young S, Dai Z. Prelicensure nursing students' attitudes and perceptions of end-of-life care. Nurs Educ
7. Thrane SE. Online palliative and end-of-life care education
for undergraduate nurses. J Prof Nurs
8. Schallmo MK, Dudley-Brown S, Davidson PM. Healthcare providers perceived communication barriers to offering palliative care to patients with heart failure: an integrative review. J Cardiovasc Nurs
9. Youssef HAM, Mansour MAM, Al-Zahrani SSM, et al. Prioritizing palliative care: assess undergraduate nursing curriculum, knowledge and attitude among nurses caring end-of-life patients. Eur J Acad Essays
10. Lee SB, Forehand JW, St. Onge JL, Acker KA. Helping bridge the great divides: supporting nurse communication at end of life. J Christ Nurs
11. American Association of Colleges of Nursing. End of Life Nursing Education
. Accessed August 12, 2020.
12. Krimshtein NS, Luhrs CA, Puntillo KA, et al. Training nurses for interdisciplinary communication with families in the intensive care unit: an intervention. J Palliat Med
13. Buller H, Virani R, Malloy P, Paice J. End-of-life Nursing and Education
Consortium communication curriculum for nurses. J Hosp Palliat Nurs
14. Mani ZA. Intensive care unit nurses experiences of providing end of life care. Middle East J Nurs
15. Montgomery KE, Sawin KJ, Hendricks-Ferguson V. Communication during palliative care and end of life: perceptions of experienced pediatric oncology nurses. Cancer Nurs
16. Bluck S, Mroz EL, Baron-Lee J. Providers' perspectives on palliative care in a neuromedicine-intensive care unit: end-of-life expertise and barriers to referral. J Palliat Med
17. Howes J. Nurses' perceptions of medication use at the end of life in an acute care setting. J Hosp Palliat Nurs
18. McAndrew NS, Leske JS. A balancing act: experiences of nurses and physicians when making end-of-life decisions in intensive care units. Clin Nurs Res
19. White K, Wilkes L, Cooper K, Barbato M. The impact of unrelieved suffering on palliative care nurses. Int J Palliat Nurs
20. Lazenby M, Ercolano E, Schulman-Green D, McCorkle R. Validity of the end-of life professional caregiver survey to assess for multi-disciplinary educational needs. J Palliat Med
. 2012;15:427–431. doi:10.1089/jpm.2011.0246.
21. Nichols M. Wit
[motion picture]. HBO Films. 2001.
22. Oliver D. Improving patient outcomes through palliative care integration in other specialised health services: what we have learned so far and how can we improve?Ann Palliat Med
. 2018;7(suppl 3):S219–S230.