The Evolution and Dissemination of the Education in Palliative and End-of-Life Care Program

Abstract

Background:

Even with growing numbers of fellowship-trained palliative care providers, primary palliative care knowledge and skills are needed to meet the national demands for palliative care. The Education in Palliative and End-of-Life Care (EPEC) Program has been one model of training clinicians in primary palliative care skills. In our second 5 years of development and dissemination, we have focused on adapting EPEC to different specialties.

Objective:

Our aim was to describe the development of EPEC adaptations and document the dissemination of our curriculum.

Methods:

The study design was a survey of EPEC trainers and documentation of other dissemination efforts via literature and Internet searches. Our subjects were all EPEC trainers and end-learners of our curriculum. We measured dissemination and teaching efforts by our trainers and evidence of EPEC use via literature and EPEC's searches.

Results:

In its second 5 years of active development, teaching, and dissemination, we have created five major adaptations (EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine, EPEC-India, and EPEC for Veterans) and trained more than 1000 trainers. Through the efforts of these Trainers and our online dissemination, more than 74,000 reported end-learners have been taught parts of the EPEC curriculum. In addition, we discovered multiple medical school courses, continuing medical education (CME), courses and specialty guidelines that have incorporated material from EPEC.

Conclusions:

In its second 5 years, EPEC remains a robust platform for adaptation to new specialties and for dissemination of primary palliative care knowledge.

Introduction

The Education in Palliative and End-of-life Care (EPEC) Program was developed in the late 1990s to teach clinicians to implement basic competencies in primary palliative care. It is one of a number of “sibling” programs initially funded by the Robert Wood Johnson Foundation and others in palliative care training and program development, including the Center to Advance Palliative Care (CAPC),¹ the End-of-Life Nursing Education Consortium (ELNEC),² the Program in Palliative Care Education and Practice (PCEP),³ and the End-of-Life Palliative Education/Research Consortium (EPERC).⁴ In more recent years, as palliative care has become a core service for hospitals and an American Board of Medical Specialties (ABMS)-accredited medical specialty, this effort has become even more necessary as the number of patients seeking palliative care will continue to exceed the number of palliative care specialists that training programs can train.⁵ EPEC has been one example of an educational program that still trains clinicians in primary palliative care.

Previous work on the first 5 years of the EPEC Program documented widespread dissemination by our initial cohort of trainers.⁶ In our second 5 years reported here, we sought to build on this foundation, but also to develop and disseminate in newer ways, specifically via adaptations of EPEC to different specialties, international adaptations, and via distance learning. This paper reports on these development efforts and dissemination during the second 5 years of the EPEC Program.

Conceptual model of dissemination/stages

Our dissemination model relies on three layers: (1) the creation of master facilitators, trainers, and end-learners to teach and practice core competencies in general palliative care; (2) adaptation of the EPEC core curriculum to fit the needs of different specialties and populations; and (3) evolution of the program design to fit the needs of new educational delivery systems and health care settings. The goal of this model is maximal dissemination of primary palliative care content⁷ to non-palliative care specialists and relevant patient and families populations through a variety of settings and delivery methods.

The first layer of this model relies of our continued development, revision, and dissemination of our core curriculum. The goal of the EPEC core curriculum is to teach basic skills in palliative care to trainers who then teach end-users. Its curriculum design is driven by a consensus-based core content, creation of materials accessible to all stakeholders, attention to adult educational design,⁸ and a modular style that is useable in a wide range of settings. Since its creation in 1999, the EPEC curriculum has undergone two major comprehensive revisions in 2003 and 2011. These revisions were prompted by new developments in the field and informed by feedback from our trainers and master facilitators. Each new revision resulted in additional modules and expanded references and resources. New modules that were added in our 2011 revision include: Family Meetings, Culture in Palliative Care, and Spirituality in Palliative Care. These modules brought the total number of modules in the EPEC core curriculum to 23. In addition to our major revisions, we incorporate feedback and minor revisions as we receive them in the electronic version of our curriculum.

In the second layer of development and dissemination, we created five major adaptations of the EPEC core curriculum for specific populations/disciplines: EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine,^9,10 EPEC for Veterans, and EPEC-India. Each of these are stand-alone curricula that had independent funding for development and adaptation (from the National Cancer Institute, the Department of Veterans Affairs, Canadian Partnership Against Cancer, and the LiveStrong Foundation) and a multiyear process of implementation and dissemination. The goal of this phase of dissemination has been to create an infrastructure of trainers within the target specialty or clinical setting. We believe, and others have posited,¹¹ that creating materials that resonate with a particular discipline's culture is essential to engaging learners and facilitating dissemination.

Our adaptations followed a similar protocol to that of the initial development of the EPEC curriculum. Each of these curricula include a full training curriculum that includes palliative care content and trainer's notes, which give trainers teaching strategies and provide the infrastructure necessary to hold training conferences. In each case, specialists within the field worked with the EPEC core team to adapt existing modules and create new modules relevant to the specialty. In addition to the creation of written curricula, slides and trainer's notes to guide trainers, each of these projects also created setting-specific trigger videos. The trigger videos are 3- to 6-minute cases (with either real or standardized patients) or narratives (with either patients or leaders in palliative care) that are designed to engage learners in the attitudinal disposition to a particular topic. The original EPEC curriculum has 12 trigger videos; EPEC for Veterans has 8 videos; EPEC-Emergency Medicine, EPEC-India, and EPEC-Oncology each have between 8 and 10 videos.

In this phase of development and dissemination, we also include specialty adaptations to create end-learners: these adaptations are not designed to create EPEC trainers (in that they do not have the sequence for creating their own master facilitators) but instead offer adapted EPEC content to end-learners. Two examples of this have been Osteopathic EPEC¹² and A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life's End (APPEAL).¹³

The third layer of development and dissemination are evolutions designed to move beyond traditional classroom learning. These adaptations have been designed to fit new delivery systems, settings, and implementation. They include distance learning (EPEC, EPEC-Oncology, Endlink), international adaptations (EPEC in Korea, EPEC in Saudi Arabia, EPEC in Eastern Europe), and an adapation for family caregivers on basic communication and navigation skills, entitled EPEC-Caregiver. Also included in this phase of development and dissemination are the development of Tailored Implementation of Practice Standards (TIPS) Kits that combine quality improvement principles and methodology with palliative care. These have been piloted with our EPEC-Emergency Medicine Program¹³ and with our EPEC-Pediatrics Program.

Methods

We used three methods to assess our in-person and online dissemination.

1. In-person dissemination

To assess in-person dissemination, we surveyed all trainers who participated in our core training program during the 2005 to 2010 time frame. We asked about number of people trained, disciplines trained, and adaptations that trainers made to the curriculum. We also included questions about barriers and challenges that they faced in adapting and teaching the materials. This was done via an online survey (using SurveyMonkey^®; SurveyMonkey, Palo Alto, CA) that was sent three times to all trainers who had participated in a Become an EPEC Trainer Conference during that period. After three attempts, trainers were considered lost to follow-up.

2. Online dissemination

To assess online dissemination, we had direct measurements of users' online activity on the different online platforms where EPEC is available. This includes our own website (epec.net) and affiliated programs that use EPEC content (Endlink, Medscape.com, National Cancer Institute [NCI]). For each of these online platforms, we had direct records of user activity.

3. Other modes of dissemination

We realize that much dissemination falls outside the scope of what trainers report back to us and we therefore also assessed alternative settings where EPEC has been used, including online dissemination, courses and medical school curricula that have included EPEC, and state and federal efforts that included EPEC. To attempt to document these methods of dissemination, we used standard medical and nonmedical search engines (including Google, Google Scholar, Medline [via PubMed and Ovid]) and used the following search terms: EPEC, Palliative Care and Education, Education in Palliative and End of Life Care, and Education of Physicians in End of Life Care.

Results

Our results are reported in three categories: in-person dissemination, online dissemination, and other modes of dissemination.

In-person dissemination

Current trainers

We surveyed all 568 core EPEC trainers who were trained at Become an EPEC Trainer Conferences between 2005 and 2010 to ask about their dissemination efforts, settings of teaching, disciplines taught, ways that they adapted the curriculum to their needs, and barriers they have faced. The response rate was 52% (295 respondents) after three electronic mailings. In addition, we also surveyed all EPEC for Veterans Trainers (258) who took our training between 2009 and 2012 and the leaders of our other adaptations (Table 1).

Table 1.

EPEC In-Person Dissemination

U.S. Become an EPEC Trainer Programs
	EPEC core trainers	EPEC for Veterans trainers
Number of trainers	295 (of 568)	258
Number of end-learners taught	21,681	10,168

International efforts to create trainers and end-learners
	EPEC-India	EPEC-Saudi Arabia	EPEC-O Canada	EPEC-Korea
Number of trainers	20	113	46	N/A
Number of end-learners	523	Not tracked	Not tracked	105¹⁵

EPEC Programs to create end-learners
	EPEC-Osteopathic	APPEAL
Number of end-learners	100¹⁷	2500
Total trainers		1048
Total trainers for whom we have data on the end-learners they've trained		553
Total documented end-learners (in-person dissemination)		35,140

APPEAL, A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life's End; EPEC, Education in Palliative and End-of-Life Care Program.

Online dissemination

For our four major online distance learning outlets, we measured numbers of users who accessed our content. These distance learning outlets are our own platform on epec.net (including licenses to health care systems), adaptations of two of our modules on Medscape.com, an adapted version called Endlink that is housed in the Northwestern University Comprehensive Cancer Center, and the self-study EPEC-O Program available through NCI (Table 2).

Table 2.

EPEC Online Dissemination

	EPEC.net	Medscape	Endlink	EPEC on NCI
Number of end-learners	2080	23,591	10,000	4201
Total online dissemination			More than 40,000 users

EPEC.net includes all users and hospital licenses. Medscape includes two EPEC-O modules, Withdrawing Nutrition and Hydration and Last Hours. Endlink includes any access of EPEC modules via Endlink (http://endlink.lurie.northwestern.edu/index.cfm). EPEC on NCI includes any access of EPEC-O modules via NCI.

EPEC, Education in Palliative and End-of-Life Care Program; NCI, National Cancer Institute.

Other dissemination venues

The nature of EPEC is to be portable and translatable into many settings. Based on search criteria described above, we found the evidence of EPEC's use in various settings (Table 3). Although the examples do not give numbers of users to whom EPEC has been disseminated, they provide evidence of its reach in many settings. We cite examples of federal, state, international, and individual medical schools that have incorporated EPEC materials into their teaching.

Table 3.

Examples of State, Federal, and International EPEC Dissemination

Federal	State	International	Medical school courses and resources
EPEC for Veterans is part of the Talent Management System (internal distance learning) at the Department of Veterans Affairs	Texas Partnership for end of life care¹⁷	ASCO has hosted courses in Turkey, Honduras, Argentina, and Mexico that utilize EPEC-O¹⁸	New York Medical College¹⁹
EPEC for Veterans is posted on We Honor Veterans website²⁰	BlueCross/BlueShield educational outreach effort, CompassionAndSupport.org, uses EPEC for their education²¹	Pallium, India²²	Yale Medical School third-year clerkship²³
Oak Ridge Institute for Science and Education (Department of Energy)²⁴	Hawaii Hospice and Palliative Care Association²⁵	Guatemala EPEC-O²⁶	UPenn pastoral care²⁷
			Jefferson Medical College CME course²⁸
			Upstate Medical University, part of third-year internal medicine clerkship²⁹

ASCO, American Society of Clinical Oncology; CME, continuing medical education; EPEC, Education in Palliative and End-of-Life Care Program.

In addition, EPEC has been cited in a number of recent clinical guidelines, including the American College of Chest Physicians Guidelines for end-of life care for patients with lung cancer³⁰ and national clinical guidelines for communication in Australia³¹; it is also included as a resource in National Comprehensive Cancer Network 2013 Palliative Care Guidelines.³²

Discussion

This paper documents the multiple modes and settings of dissemination of EPEC's core curriculum and its related versions. We have described that in our second 5 years of active development, teaching, and dissemination, we have trained more than 1,000 trainers and more than 74,000 reported end-learners via trainers' training efforts and online learning. We are aware that we are unable to document end-learners from programs that do not track their outreach, those who did not respond to our survey of trainers, or those who use the curriculum without contacting us. Despite these limitations, we believe EPEC continues to be a widely disseminated and adaptable primary palliative care curriculum. Although this finding is lower than our original report of EPEC dissemination during the first 5 years of our program, it represents a sizable population of clinicians who have used EPEC to enhance their primary palliative care education. With the continued maturation of the field of palliative medicine and its recognition as a board-certified discipline, we expected and found that our dissemination would be somewhat attenuated compared with our initial dissemination.

In addition to the absolute numbers of people who have used EPEC educationally, our findings show the continued adaptability of the EPEC curriculum in the creation of six major adaptations (EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine, EPEC for Veterans, EPEC-India, and EPEC-Pediatrics under development). Each of these adaptations has included the infrastructure and curricular materials to teach and create EPEC trainers in these specialties. This includes a rigorous curriculum development and review process to create content and a faculty development process to create facilitators. These processes are key to continued sustainability and continued dissemination of EPEC into different settings. Such adaptability was one of the orginal goals of EPEC and our specialty adaptations have demonstrated EPEC has the flexibility to meet the needs of clinicians in various contexts.

In addition to the full and programmatic adaptations above, we have described multiple ways in which our trainers and colleagues have adapated the curriculum to their specific settings and needs. These include EPEC in Korea, EPEC in Saudi Arabia, Osteopathic EPEC, and APPEAL. Each of these adaptations was undertaken by groups of our EPEC trainers and/or master facilitators. Although these adaptations have generally not been as extensive as the program-wide adaptations, they serve to reach important populations of providers and, subsequently, important populations of patients and families. One example is the APPEAL Project, under the direction of Dr. Richard Payne,¹² a program designed to meet the needs of African American patients and their families, which has trained an estimated 2500 providers.

A key element of our adaptations and has been alliances and collaborations with existing organizations. These have included the American Society of Clinical Oncology (ASCO) and the National Cancer Institute for EPEC-Oncology, Canadian Partnership Against Cancer for EPEC-Oncology Canada, the Department of Veterans Affairs (VA) for EPEC for Veterans, The American College of Emergency Physicians (ACEP) for EPEC-Emergency Medicine, and the American Society for Pediatric Hematology and Oncology (ASPHO) for EPEC-Pediatrics. These collaborations take advantage of clinicians' identification with these organizations and specialties and the existing infrastructure that these organizations can call upon to help disseminate EPEC—from conference announcements to conference facilities to posting on webpages. EPEC for Veterans, for example, is now part of the VA's internal online education system that disseminates online content to all 250,000 VA employees. EPEC-Oncology is part of the NCI educational offerings. EPEC-Emergency Medicine is being adapted by ACEP to be part of its distance learning options. These collaborations also further one of EPEC's core goals (and a goal of the whole discipline of palliative medicine) of teaching primary palliative care skills to non-palliative care specialists.

Our initial conceptual model identified three layers of development and dissemination and our results have demonstrated support for that model in the following ways:

1. A core curriculum in primary palliative care taught by master facilitators and disseminated by trainers. We have documented extensive dissemination of our curriculum in this setting.

2. Programmatic adaptations that followed a similar rigorous development process. We have been able to create extensive companion curricula in this manner.

3. The introduction of distance learning and other delivery modalities of the curriculum. This has allowed an increased number of practitioners to access our curriculum in more flexible ways.

At each of these levels, the EPEC curriculum, in its second 5 years of implementation, has shown widespread dissemination among practitioners. Just as importantly, the curriculum has shown the adaptability and flexibility necessary to meet the needs of learners in multiple contexts.

Barriers and challenges

We have recognized continued barriers and challenges. Creation of curricular adaptations is an intense and time-consuming process. With each of our adaptations, we have had a writing team and multiple steps of editing and review. We believe that this has resulted in a rigorous and thorough product, but it requires significant faculty and staff time. Many of our writers are not based at Northwestern University (where EPEC is based) and this has added a level of complexity to curricular coordination, but it has also allowed the gathering of national palliative care expertise.

A second main challenge has been keeping track of all of the different adaptations and activities of our trainers. Our means for doing this has been to periodically survey a listserv of our more than 2,000 trainers (since EPEC's founding) about their dissemination efforts, our own website, and a Facebook page. We realize, however, that this approach may underestimate trainers' activities. Future goals for EPEC will be to continue to nurture the robust engagement of our trainers as a community.

Next steps

In our next phase, we will continue to build community among our trainers and work to bridge the classroom-to-bedside gap. Many trainers comment that our EPEC Conferences help to nourish their spirit in palliative care and we hope to be able to maintain that community after the conclusion of our conferences. This phase will have more of an emphasis on training teams of palliative care providers, introducing quality improvement kits for clinical change that build on our education, and targeting specific institutions and health systems for education such as we've done with several facilities and health systems for our distance learning curriculum.

Our second priority is working to bridge the classroom-to-bedside gap. To this end, we have developed quality improvement kits (TIPS Kits) to help trainers design quality improvement projects in palliative care. These kits have been developed for pain management in the emergency department and for implementation of the Memorial Symptom Assessment Screening (MSAS) for Pediatrics.

Limitations

There are clearly limitations to these data about our dissemination. They are all self-reported and based on review of medical literature and evidence of dissemination from searches online. In addition, they are all limited to the number of participants trained and there are no demographic or knowledge data about end-learners or about the specific modules that trainers and end-learners have used. Another limitation to this effort is that although we encourage our trainers to assess their end-learners, we have not gathered these data nor do we perform quality monitoring of our trainers' teaching efforts. We have a high degree of quality control among the master facilitators who teach at our Become an EPEC Trainer Conferences (all have participated in our Professional Development Workshop, and have co-facilitated with an existing master facilitator and received favorable evaluations from participants prior to becoming a master facilitator). However, we have limited quality control over our trainers and no quality control over the learners that they train.

Conclusion

Despite these limitations and despite the barriers and challenges described above, we believe the EPEC Program has shown itself to be a highly adaptable and highly disseminated training program for primary palliative care. We have reached at least 74,000 end-learners while preparing more than 1000 EPEC trainers and developing multiple adaptations of our curriculum. There is a continuing and growing need for primary palliative care education among clinicians of all disciplines and we believe EPEC represents one modality to provide this education.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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