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Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 280-286
PALLIATIVE CARE COMMUNICATION ELAINE WITTENBERG-LYLES, JOY GOLDSMITH, AND CHRISTINE SMALL PLATT OBJECTIVES: To summarize the challenges of teaching, practicing, and learning palliative care communication and offer resources for improving skills and educating others.
DATA SOURCES: A theoretically grounded, evidence-based communication curriculum called COMFORT (Communication, Orientation opportunity, Mindful presence, Family, Openings, Relating, and Team).
and
CONCLUSION: The COMFORT curriculum is available for free through a Web site, a smartphone/iPad application, and online for continuing education units. IMPLICATIONS
FOR NURSING PRACTICE: The COMFORT curriculum provides resources to support the expansion and inclusion of palliative care practice not only in oncology, but also in a wide variety of disease contexts.
KEY WORDS: Palliative care, communication, communication education, nurse communication
I
NTEGRATING palliative care into oncology requires sensitive communication about diagnosis, discussing factors influencing treatment decision-making (employment, financial, familial), relaying and mediating communication among family members, and psychosocial counseling about difficult topics. A series of randomized controlled trials have recently demonstrated the benefits of palliative care in paElaine Wittenberg-Lyles, PhD: Division of Nursing Research and Education, City of Hope, Duarte, CA. Joy Goldsmith, PhD: Department of Communication, University of Memphis, Memphis, TN. Christine Small Platt, MBA: Department of Communication, University of Memphis, Memphis, TN. Address correspondence to Elaine Wittenberg-Lyles, PhD, Division of Nursing Research and Education, City of Hope, 1500 E. Duarte Road, Pop Sci Bldg 173, Duarte, CA 91010. e-mail: [email protected] Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.010
tients with advanced cancer integrated into standard oncology care.1 Language is critical to facilitating access to services because most Americans do not understand the term palliative care,2 making it necessary for providers to be skilled at defining and describing the scope of palliative services.3 Articulating goals of care is an essential element of these conversations, so that this information can be shared with the oncology team who works with the patient and family to choose appropriate care plans.4 When appropriate words are used to describe palliative care, consumers respond positively and want palliative care services.2 However, few nurses are prepared for or feel adept at facilitating discussions about palliative topics and most report receiving little to no education about palliative care communication.5 Yet, as our population continues to age and the number of individuals with life-limiting illness increases, it is necessary for all clinicians to be able to approach patients and families about the services and benefits of
PALLIATIVE CARE COMMUNICATION
palliative care. This article presents an overview of the challenges of teaching, practicing, and learning palliative care communication, and offers resources, tools, and training programs for improving individual skills and educating others. The experiences of a pediatric oncology nurse, Jeremy, are used to feature moments in the practicing life of a nurse and the communication training needs encountered. Jeremy’s experiences depict communication difficulties and demonstrate the application of specific resources in clinical education and practice.
THE CHALLENGES OF PALLIATIVE CARE COMMUNICATION For nurses, palliative care communication can be challenging for two primary reasons. First, healthcare systems create complex communication environments for patient access and delivery of palliative care. A lack of knowledge about palliative care still exists for some providers,3 making it necessary for palliative care clinicians to provide system-level education about the specialty to establish referral networks.6 This lack of understanding is convoluted by the debate over the name palliative care, with oncologists reporting palliative care as a distressing term that reduces hope for patients and families.7 Patient and provider education is needed to help patients and families understand palliative care and the scope of services provided by palliative care teams.2 In addition to these system-level influences on communication, nurses also face challenges with palliative care communication topics and complex clinical situations. Nurses report being uncomfortable discussing prognosis, hospice, advanced care planning, referring a patient to hospice, and telling a patient that he/she will die from cancer.8-11 In a national study, 46% of oncology nurses described that they sometimes, often, or always avoided talking with patients because they were uncomfortable giving bad news.10 Team communication can also be problematic because of a lack of clearly defined responsibilities among team members, reliance on informal channels of communication, and conflict caused by social circumstances.12
COMMUNICATION AND CLINICAL EDUCATION Less than 10 years ago, nurses only received one or two lectures on palliative care as part of their
281
nursing program education.13 Today, advances in curricular development in undergraduate and graduate nursing programs remain negligible.14 Graduate student nurses have limited knowledge about palliative care15 and there are few interprofessional learning opportunities for undergraduate and graduate nurses and even less through continuing education forums.12,16 Overall, there is a general need for further education about palliative care in graduate and undergraduate nursing programs. While symptom management is consistently reported as a top content area for palliative care education, instruction on communication and how to communicate with patients and families about death and dying is also a well-documented need.15,17 Nurses need and want more education on communication.10 Nurse communication training has yielded significant results in the assessment of immediate outcomes (confidence, knowledge); however, retention of confidence and skills has not been successfully demonstrated.18 The interdisciplinary structure of the palliative care team also requires nurses to have exposure to interprofessional education to develop leadership skills and gain clarity on the nursing role within a team-based approach to care.12 Aside from the 1-hour module on communication in the End-of-Life Nursing Education Consortium, which is offered as a continuing education course and not required by all nurses, most nurses learn communication skills from on-thejob training, preceptors, and colleagues.19 However, these skills may or may not be evidenced-based communication strategies that ensure quality patient and family care or effective team practice.
APPROACH TO COMMUNICATION The majority of nurse communication training has been modeled after approaches taken in medicine. Training workshops have included adapted versions of ONCO-Talk20 or EPEC21 which provide traditional sender-receiver models of communication and primarily depict and address the role of the physician. These programs prioritize information exchange and ensure receipt of messages.22 In contrast, the nurse’s communication role is transactional in nature, which means that both nurse and patient/family simultaneously and reciprocally design, deliver, and interpret messages and create meaning together.23 In this transactional model of communication, information is not
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deposited and then assessed for receipt; rather, it is created through the interaction with an emphasis on task communication (accomplishing the relaying of information) alongside relational communication (conveying nonverbal communication). This approach is predicated upon the axiom that people communicate all the time, regardless of whether or not they intend to communicate, and that every message (verbal or nonverbal) conveys both content (verbal message) and relationship (nonverbal communication).24 Based on this approach to communication, the authors created an innovative curriculum called COMFORT and a series of ancillary resources. These resources are identified and described here.
COMFORT COMMUNICATION CURRICULUM The COMFORT communication curriculum is a theoretically grounded curriculum for teaching palliative care communication.23,25,26 COMFORT is an acronym that stands for C-Communication, O-Orientation and opportunity, M-Mindful presence, F-Family, O-Openings, R-Relating, and T-Team and is detailed in a volume on communication in palliative nursing.23 Narrative communication is introduced as a communication technique to draw out patient/family stories, use the information as a guide in care planning, and provide person-centered messages in difficult communication situations. The use of nonverbal communication is also highlighted to emphasize relational communication strategies. The curriculum is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by clinicians, but rather a set of holistic principles that are practiced concurrently and reflectively during patient/family care. This patient-centered approach emphasizes the collaborative, reciprocal nature of clinicianpatient-family interactions as participants relationally create and adapt to shared meaning. COMFORT has been shown to improve clinician self-efficacy, attitudes toward communication, and reduce communication apprehension.27,28 A key goal in the development of the COMFORT curriculum was to disseminate resources and materials for teaching, practicing, and learning palliative care communication. Specific projects include establishing a Web site to house all curricular materials, an iOS smartphone/iPad application (app) with communication strategies (see Fig. 1), and expanding the curriculum availability to online continuing education platforms. These
FIGURE 1. Health communication: building professional skills (iOS App). resources are readily available without cost or membership.
TEACHING PALLIATIVE CARE COMMUNICATION ‘‘Gloria, a nurse faculty member, was assigned to teach a new course called Trends in Nursing in the undergraduate nursing program at her college. Within the BSN curriculum, the course explores the legal and ethical relationships in nursing, palliative and end of life care, the economics of dying, and interpersonal relationships among healthcare professionals, families, and patients. Gloria’s own clinical practice in oncology and palliative care was extensive. However, she had never built a course on these topics and was searching for teaching materials in one location to support the course objectives. A senior faculty member directed Gloria to a new Web site, the Clinical Communication Collaborative (www.clinicalcc.com). Here she found developed modules, instruction manuals with a variety of
PALLIATIVE CARE COMMUNICATION
teaching resources, power points, and directly related research articles. Gloria integrated these resources along with competency topics for the class. As the course unfolded, a second-career nursing student, Jeremy, found himself particularly drawn to palliative care as an area of clinical practice. He met many times with Gloria as he began to identify the essential role of palliative care in the field of pediatric oncology which he hoped to enter upon graduation.’’ The acceptance of palliative care as a specialty presents a new demand as well as an opportunity for nurse educators. The challenge for many clinical educators in nursing is integrating palliative care content along with content specific to serious and life-threatening cancers.29 The majority of palliative care patients are referred from oncology, thus nurse educators are challenged to effectively join these two disciplines. With few resources available and the demand to disseminate content high, Gloria and other nurse faculty in the US are still limited in the availability of resources. To disseminate curriculum for faculty, the Clinical Communication Collaborative (CCC) Web site was launched in October 2012. The CCC is a resource Web site that houses clinical communication tools for healthcare professionals. The goal is to support clinicians and educators through communication training, education, and research in order to meet the changing demands of healthcare systems and address patient/family needs in the context of cancer and other serious illnesses. The National Consensus Project for Quality Palliative Care guidelines articulate how vital palliative care communication and delivery is to all aspects of oncology care. The formation and distribution of a curriculum and ancillary resources featuring communication in the practice of palliative care enables the work of faculty training the next generation of clinicians. Uniquely, CCC intentionally places COMFORT at the center of the curriculum. Resources featuring the COMFORT communication curriculum have been tested, peer-reviewed, and taught,28,30,31 and are available to educators on the CCC Web site.
PRACTICING PALLIATIVE CARE COMMUNICATION ‘‘Jeremy graduated and has been working on a pediatric oncology wing of a comprehensive cancer center. The Wu family from Lijiang China arrived to pursue care for their child Anli. At age 7 she had been diagnosed with brain stem glioma
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and Jeremy became Anli’s nurse. She declined rapidly and within days of their arrival lost the ability to walk. The family brought with them traditional healing herbs essential to the beliefs and practices for many Chinese citizens. The smell was strong by Western standards. Almost immediately, other patients and families noticed, and nursing staff began to complain. Pressure from two unit nurses forced the Wu family to dispose of the precious blend of herbs. A day later, the family announced that they were planning to leave the hospital because they were not allowed to include essential components from their own culture. Jeremy consulted an app on his smartphone and located the cultural differences tab with suggested communication strategies, and used the information when he asked the family, ‘‘Can you describe the power of the herbs you brought with you so we can find a way to incorporate them into your care?’’ Culture, team communication, structures of institutional practice, and interpersonal communication across cultures are just some of the moving parts in the Wu family’s distress. The Wu’s profound need to include their own cultural and spiritual practices related to the use of healing herbs was lost to the institution, its clinicians, and patients and families also receiving care on the same floor. Eliciting essential information from a patient and most especially a family is imperative to ensuring the best comfort possible. Palliative care delivered in the context of advanced cancer demands attention to psychosocial and spiritual aspects of dying. Palliative care communication must engage patients (and families) in shared decision-making and include honesty, inquiry, repetition, and empathy.4 Jeremy’s attempt to build a bridge to the Wu’s after conflict had escalated represents a clear effort to preserve quality care for this family. Pediatric oncology presents unique and complex demands for parents who are confronted with the demand of decision-making and its profound implications and burdens.32 Like the Wu’s need to integrate their own cultural practices for spiritual support, nursing communication strategies meant to achieve palliative goals are vital to reducing family suffering. Advance care planning is also a neglected topic by nurses who lack experience, education, and time to address this important communication task.33 Not unlike the Wu’s, barriers to culture, health literacy, and the life world of the patient/family are destructive to the
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trust shared between a nurse and patient/family. Nurses need a range of resources to manage the ongoing challenge of communicating respect and compassion to alleviate the cross-cultural burdens in terminal illness. Health Communication Building Professional Skills is a smartphone or iPad app that presents free, easily accessed prompts to help nurses engage palliative care communication practices (Fig. 1). Built from the COMFORT curriculum housed on the CCC Web site, The ‘Communication Toolkit’ and ‘Difficult Scenarios’ provide over 100 practical skills in just seconds—for nurses like Jeremy who need immediate access to support for challenging communication situations (Table 1). The toolkit feature of the app identifies communication topics for specific nurse needs, such as dealing with family caregivers, health literacy tools, and responding to hard questions. Likewise, a separate component of the app addresses difficult scenarios and provides instruction on what to observe, what to ask, and how to respond based on the context. More than 700 healthcare professionals have downloaded the app since its release in September 2013, primarily within the United States as well as the United Kingdom, Canada, and Australia.
LEARNING PALLIATIVE CARE COMMUNICATION While a core tenet of palliative care is that it is interdisciplinary, courses and other educational programs for team practice and communication are rare,16 Jeremy needed resources to improve
TABLE 1. Health Communication: Building Professional Skills (iOS App) Download
Find Free App from iTunes Store
Navigate
Select communication challenges you are facing Identify communication tools to employ in your context See short video support from CCC faculty about challenges in clinical communication Communicate with patients, families, teams using the support and practical suggestions from the Health Communication App Share your feedback and suggestions with us using our brief pop-up survey
View Engage
Respond
his situation, but had limits on his time in light of his full work schedule. Given that continuing education is valued among hospice and palliative care nurses,17 and self-directed learning packages have been successfully implemented,18 Webbased and online platforms for instruction may be viable options for providing palliative care communication education. E-learning and workplace distance learning have been proffered as feasible educational approaches to meet educational needs in palliative care.14 To meet the growing demand for interprofessional education and resources, two versions of the COMFORT modules were created for continuing education and made available at no cost. Through CECentral, offered through University of Kentucky Healthcare (www.cecentral.com/ comfort), four COMFORT modules were made available (communication, orientation and opportunity, family, and team). Each module consists of a video introduction, brief didactic overview of communication concepts, analysis of recorded real-time interactions among hospice team members, and debriefing of exemplary and missed communication strategies. COMFORT delivery in online modules has been an effective online curricular tool in teaching a variety of disciplines specific palliative care communication strategies.31 After a peer-review process facilitated through the Association of American Medical Colleges, the COMFORT curriculum was selected as an Interprofessional Education Collaborative resource. The curriculum was revised and shaped for interprofessional learners, and the MedEd portal Web site continues to provide COMFORT print materials including teaching instructions (www.mededportal.org/publication/9298).
RESEARCH IMPLICATIONS AND FUTURE NEEDS In addition to structural and health policy changes, increased training of palliative care nurses and oncologists will be critical to meet the growing demand for high-quality palliative care and to meet the vision set by the American Society of Clinical Oncology (ASCO) for full integration of palliative care by 2020.1 Full integration of palliative care will be highly dependent on the nurse’s ability to provide early and ongoing assessment of patient and family palliative care needs, requiring flexible and fluid communication that includes the ability to interpret medical jargon,
PALLIATIVE CARE COMMUNICATION
procedures, treatment, manage conflict between family members, and convey support in decisionmaking about oncology care. Multiple education modalities are needed to reach nurses across a variety of care settings and bridge geographic barriers and financial constraints present in the majority of healthcare systems today. The teaching of palliative care communication will be important to easing student concerns, fears, and trepidation about palliative care contexts–a necessary component of encouraging students to focus on a career, commitment, and understanding of palliative care. To accomplish this, educators need curriculum that incorporates building communication skills into palliative care coursework. The short- and long-term goals of the Clinical Communication Collaborative are designed to lay the foundational communication framework to support curriculum development. Retaining professional palliative care staff also continues to be challenging, often leading to high staff turnover.2 Future work is needed to develop curriculum that also addresses the selfcare needs of palliative care staff to aid in retention efforts. The current practice of palliative care communication requires staff to focus on barriers to patient-centered communication and serve in a reactive rather than proactive role. As palliative care programs become more established, future work will need to focus on the delivery process of care and how these processes influence communication with patients and families. Communication barriers, such as the one Jeremy experienced with the Wu family, often have more to do with reactive decisions rather than proactive decision-making. Implementing processes of care that incorporate patient/family communication to determine care concerns and needs at the beginning of care will serve as better models of palliative care and potentially defray costs associated with communication conflicts. Patient and family education, a cornerstone of palliative care communication, should be developed so that communication practices meet
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health literacy needs and include various modes of delivery, such as print and video. Future research should assess the benefits and impact of social media and technology-based communication among staff/palliative care.2 The Clinical Communication Collaborative continues to research, plan, and develop alternative channels to advance knowledge about palliative care communication, facilitating interventions that will improve psychosocial care across healthcare disciplines and systems. Communication solutions such as Health Communication: Building Professional Skills allow easy and unlimited access to theory-based support tools; however, research is needed to determine if nurses will use these tools and how they will impact care delivery. Finally, learning palliative care communication requires interprofessional education as well as team-building activities to sustain team-based approaches to care. Small group and problem-based learning approaches that facilitate the development of team communication and teamwork need to be a focal point of curricular development. Evolved educational programs like COMFORT, although nontraditional, may offer one approach to fostering team-based palliative care. Nursing programs have traditionally relied on nurse-faculty and there is a need to explore using interdisciplinary faculty to teach palliative care communication.12 To meet this challenge, COMFORT facilitator guides need further development for all levels of nurse instruction, including specific graduate nursing programs and multidiscipline teams. Regardless of advances in training and education, the connection between competency and practice has yet to be resolved in clinical communication research. Outcome assessment following immediate conclusion of a training program does not necessarily yield implementation into practice. As noted, patient feedback regarding nurse communication is missing in intervention research.34 In-service support tools and continuing education modalities must reflect integrated, realworld situations with pragmatic solutions.
REFERENCES 1. Smith T, Temin S, Alesi E, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 2012;30:880-887.
2. Fletcher DS, Panke JT. Improving value in healthcare: opportunities and challenges for palliative care professionals in the age of health reform. J Hosp Palliat Nurs 2012;14:452-461.
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3. Ritchie CS, Ceronsky L, Cote TR, et al. Palliative care programs: the challenges of growth. J Palliat Med 2010;13:10651070. 4. Gaertner J, Weing€artner V, Wolf J, Voltz R. Early palliative care for patients with advanced cancer: how to make it work? Curr Opin Oncol 2013;25:342-352. 5. 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 2011;14:1325-1332. 6. Glare PA. Early implementation of palliative care can improve patient outcomes. J Natl Compr Canc Netw 2013;11(suppl 1):S3-S9. 7. Fadul N, Elsayem A, Palmer JL, et al. Supportive versus palliative care: what’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 2009;115:2013-2021. 8. Boyd D, Merkh K, Rutledge DN, Randall V. Nurses’ perceptions and experiences with end-of-life communication and care. Oncol Nurs Forum 2011;38:E229-E239. 9. Schulman-Green D, McCorkle R, Cherlin E, JohnsonHurzeler R, Bradley EH. Nurses’ communication of prognosis and implications for hospice referral: a study of nurses caring for terminally ill hospitalized patients. Am J Crit Care 2005;14:64-70. 10. Helft PR, Chamness A, Terry C, Uhrich M. Oncology nurses’ attitudes toward prognosis-related communication: a pilot mailed survey of oncology nursing society members. Oncol Nurs Forum 2011;38:468-474. 11. Zhou G, Stoltzfus JC, Houldin AD, Parks SM, Swan BA. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum 2010;37:E400E410. 12. Klarare A, Hagelin CL, F€ urst CJ, Fossum B. Team interactions in specialized palliative care teams: a qualitative study. J Palliat Med 2013;16:1062-1069. 13. Dickinson GE. End-of-life and palliative care issues in medical and nursing schools in the United States. Death Stud 2007;31:713-726. 14. Becker R. Embracing education in palliative care. Int J Palliat Nurs 2005;11:404. 15. Shea J, Grossman S, Wallace M, Lange J. Assessment of advanced practice palliative care nursing competencies in nurse practitioner students: implications for the integration of ELNEC curricular modules. J Nurs Educ 2010;49:183-189. 16. Supiano KP. Weaving interdisciplinary and disciplinespecific content into palliative care education: one successful model for teaching end-of-life care. Omega (Westport) 2013;67:201-206. 17. White KR, Coyne P, White S. Are hospice and palliative nurses adequately prepared for end-of-life care? J Hosp Palliat Nurs 2012;14:133-140.
18. Pitman S. Evaluating a self-directed palliative care learning package for rural aged care workers: a pilot study. Int J Palliat Nurs 2013;19:290-294. 19. Mullan BA, Kothe EJ. Evaluating a nursing communication skills training course: the relationships between self-rated ability, satisfaction, and actual performance. Nurse Educ Pract 2010;10:374-378. 20. Back AL, Arnold RM, Tulsky JA, Baile WF, FryerEdwards KA. Teaching communication skills to medical oncology fellows. J Clin Oncol 2003;21:2433-2436. 21. The EPEC Project. Funded by The Robert Wood Johnson Foundation: Institute for Ethics at the American Medical Association; 1999. Available at: http://www.epec.net. (accessed Sep 23, 2014). 22. Wittenberg-Lyles EM, Goldsmith J, Sanchez-Reilly S, Ragan SL. Communicating a terminal prognosis in a palliative care setting: deficiencies in current communication training protocols. Soc Sci Med 2008;66:2356-2365. 23. Wittenberg-Lyles E, Goldsmith J, Ferrell B, Ragan S. Communication in palliative nursing. New York, NY: Oxford; 2012. 24. Watzlawick P, Beavin J, Jackson DD. Pragmatics of human communication: a study of interactional patterns, pathologies, and paradoxes. New York: W.W. Norton; 1967. 25. Ragan S, Wittenberg-Lyles EM, Goldsmith J, SanchezReilly S. Communication as comfort: multiple voices in palliative care. New York: Routledge; 2008. 26. Wittenberg-Lyles E, Goldsmith J, Ragan S, SanchezReilly S. Dying with comfort: family illness narratives and early palliative care. Cresskill, NJ: Hampton Press; 2010. 27. Wittenberg-Lyles E, Goldsmith J, Ragan S. The COMFORT initiative: palliative nursing and the centrality of communication. J Hosp Palliat Nurs 2010;12:282-294. 28. Wittenberg Lyles E, Goldsmith J, Richardson B, Hallett J, Clark R. The practical nurse: a case for COMFORT communication training. Am J Hosp Palliat Care 2013;30:162-166. 29. Grant M, Elk R, Ferrell B, Morrison S, von Gunten C. Current status of palliative care–Clinical implementation, education, and research. CA Cancer J Clin 2009;59:327-335. 30. Goldsmith J, Wittenberg-Lyles E. Comfort: Evaluating a new communication curriculum with nurse leaders. J Prof Nurs 2013;29:388-394. 31. Wittenberg-Lyles E, Goldsmith J, Ferrell B, Burchett M. Assessment of an interprofessional online curriculum for palliative care communication training. J Palliat Med 2014;17:400-406. 32. Foster T, Lafond D, Reggion C, Hinds P. Pediatric palliative care in childhood cancer nursing: From diagnosis to cure or end of life. Semin Oncol Nurs 2010;26:205-221. 33. Blackford J, Street AF. Facilitating advance care planning in community palliative care: conversation starters across the client journey. Int J Palliat Nurs 2013;19:132-139. 34. Raunkiaer M, Timm H. Interventions concerning competence building in community palliative care services–a literature review. Scand J Caring Sci 2013;27:804-819.
Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 280-286
PALLIATIVE CARE COMMUNICATION ELAINE WITTENBERG-LYLES, JOY GOLDSMITH, AND CHRISTINE SMALL PLATT OBJECTIVES: To summarize the challenges of teaching, practicing, and learning palliative care communication and offer resources for improving skills and educating others.
DATA SOURCES: A theoretically grounded, evidence-based communication curriculum called COMFORT (Communication, Orientation opportunity, Mindful presence, Family, Openings, Relating, and Team).
and
CONCLUSION: The COMFORT curriculum is available for free through a Web site, a smartphone/iPad application, and online for continuing education units. IMPLICATIONS
FOR NURSING PRACTICE: The COMFORT curriculum provides resources to support the expansion and inclusion of palliative care practice not only in oncology, but also in a wide variety of disease contexts.
KEY WORDS: Palliative care, communication, communication education, nurse communication
I
NTEGRATING palliative care into oncology requires sensitive communication about diagnosis, discussing factors influencing treatment decision-making (employment, financial, familial), relaying and mediating communication among family members, and psychosocial counseling about difficult topics. A series of randomized controlled trials have recently demonstrated the benefits of palliative care in paElaine Wittenberg-Lyles, PhD: Division of Nursing Research and Education, City of Hope, Duarte, CA. Joy Goldsmith, PhD: Department of Communication, University of Memphis, Memphis, TN. Christine Small Platt, MBA: Department of Communication, University of Memphis, Memphis, TN. Address correspondence to Elaine Wittenberg-Lyles, PhD, Division of Nursing Research and Education, City of Hope, 1500 E. Duarte Road, Pop Sci Bldg 173, Duarte, CA 91010. e-mail: [email protected] Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.010
tients with advanced cancer integrated into standard oncology care.1 Language is critical to facilitating access to services because most Americans do not understand the term palliative care,2 making it necessary for providers to be skilled at defining and describing the scope of palliative services.3 Articulating goals of care is an essential element of these conversations, so that this information can be shared with the oncology team who works with the patient and family to choose appropriate care plans.4 When appropriate words are used to describe palliative care, consumers respond positively and want palliative care services.2 However, few nurses are prepared for or feel adept at facilitating discussions about palliative topics and most report receiving little to no education about palliative care communication.5 Yet, as our population continues to age and the number of individuals with life-limiting illness increases, it is necessary for all clinicians to be able to approach patients and families about the services and benefits of
PALLIATIVE CARE COMMUNICATION
palliative care. This article presents an overview of the challenges of teaching, practicing, and learning palliative care communication, and offers resources, tools, and training programs for improving individual skills and educating others. The experiences of a pediatric oncology nurse, Jeremy, are used to feature moments in the practicing life of a nurse and the communication training needs encountered. Jeremy’s experiences depict communication difficulties and demonstrate the application of specific resources in clinical education and practice.
THE CHALLENGES OF PALLIATIVE CARE COMMUNICATION For nurses, palliative care communication can be challenging for two primary reasons. First, healthcare systems create complex communication environments for patient access and delivery of palliative care. A lack of knowledge about palliative care still exists for some providers,3 making it necessary for palliative care clinicians to provide system-level education about the specialty to establish referral networks.6 This lack of understanding is convoluted by the debate over the name palliative care, with oncologists reporting palliative care as a distressing term that reduces hope for patients and families.7 Patient and provider education is needed to help patients and families understand palliative care and the scope of services provided by palliative care teams.2 In addition to these system-level influences on communication, nurses also face challenges with palliative care communication topics and complex clinical situations. Nurses report being uncomfortable discussing prognosis, hospice, advanced care planning, referring a patient to hospice, and telling a patient that he/she will die from cancer.8-11 In a national study, 46% of oncology nurses described that they sometimes, often, or always avoided talking with patients because they were uncomfortable giving bad news.10 Team communication can also be problematic because of a lack of clearly defined responsibilities among team members, reliance on informal channels of communication, and conflict caused by social circumstances.12
COMMUNICATION AND CLINICAL EDUCATION Less than 10 years ago, nurses only received one or two lectures on palliative care as part of their
281
nursing program education.13 Today, advances in curricular development in undergraduate and graduate nursing programs remain negligible.14 Graduate student nurses have limited knowledge about palliative care15 and there are few interprofessional learning opportunities for undergraduate and graduate nurses and even less through continuing education forums.12,16 Overall, there is a general need for further education about palliative care in graduate and undergraduate nursing programs. While symptom management is consistently reported as a top content area for palliative care education, instruction on communication and how to communicate with patients and families about death and dying is also a well-documented need.15,17 Nurses need and want more education on communication.10 Nurse communication training has yielded significant results in the assessment of immediate outcomes (confidence, knowledge); however, retention of confidence and skills has not been successfully demonstrated.18 The interdisciplinary structure of the palliative care team also requires nurses to have exposure to interprofessional education to develop leadership skills and gain clarity on the nursing role within a team-based approach to care.12 Aside from the 1-hour module on communication in the End-of-Life Nursing Education Consortium, which is offered as a continuing education course and not required by all nurses, most nurses learn communication skills from on-thejob training, preceptors, and colleagues.19 However, these skills may or may not be evidenced-based communication strategies that ensure quality patient and family care or effective team practice.
APPROACH TO COMMUNICATION The majority of nurse communication training has been modeled after approaches taken in medicine. Training workshops have included adapted versions of ONCO-Talk20 or EPEC21 which provide traditional sender-receiver models of communication and primarily depict and address the role of the physician. These programs prioritize information exchange and ensure receipt of messages.22 In contrast, the nurse’s communication role is transactional in nature, which means that both nurse and patient/family simultaneously and reciprocally design, deliver, and interpret messages and create meaning together.23 In this transactional model of communication, information is not
282
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deposited and then assessed for receipt; rather, it is created through the interaction with an emphasis on task communication (accomplishing the relaying of information) alongside relational communication (conveying nonverbal communication). This approach is predicated upon the axiom that people communicate all the time, regardless of whether or not they intend to communicate, and that every message (verbal or nonverbal) conveys both content (verbal message) and relationship (nonverbal communication).24 Based on this approach to communication, the authors created an innovative curriculum called COMFORT and a series of ancillary resources. These resources are identified and described here.
COMFORT COMMUNICATION CURRICULUM The COMFORT communication curriculum is a theoretically grounded curriculum for teaching palliative care communication.23,25,26 COMFORT is an acronym that stands for C-Communication, O-Orientation and opportunity, M-Mindful presence, F-Family, O-Openings, R-Relating, and T-Team and is detailed in a volume on communication in palliative nursing.23 Narrative communication is introduced as a communication technique to draw out patient/family stories, use the information as a guide in care planning, and provide person-centered messages in difficult communication situations. The use of nonverbal communication is also highlighted to emphasize relational communication strategies. The curriculum is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by clinicians, but rather a set of holistic principles that are practiced concurrently and reflectively during patient/family care. This patient-centered approach emphasizes the collaborative, reciprocal nature of clinicianpatient-family interactions as participants relationally create and adapt to shared meaning. COMFORT has been shown to improve clinician self-efficacy, attitudes toward communication, and reduce communication apprehension.27,28 A key goal in the development of the COMFORT curriculum was to disseminate resources and materials for teaching, practicing, and learning palliative care communication. Specific projects include establishing a Web site to house all curricular materials, an iOS smartphone/iPad application (app) with communication strategies (see Fig. 1), and expanding the curriculum availability to online continuing education platforms. These
FIGURE 1. Health communication: building professional skills (iOS App). resources are readily available without cost or membership.
TEACHING PALLIATIVE CARE COMMUNICATION ‘‘Gloria, a nurse faculty member, was assigned to teach a new course called Trends in Nursing in the undergraduate nursing program at her college. Within the BSN curriculum, the course explores the legal and ethical relationships in nursing, palliative and end of life care, the economics of dying, and interpersonal relationships among healthcare professionals, families, and patients. Gloria’s own clinical practice in oncology and palliative care was extensive. However, she had never built a course on these topics and was searching for teaching materials in one location to support the course objectives. A senior faculty member directed Gloria to a new Web site, the Clinical Communication Collaborative (www.clinicalcc.com). Here she found developed modules, instruction manuals with a variety of
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teaching resources, power points, and directly related research articles. Gloria integrated these resources along with competency topics for the class. As the course unfolded, a second-career nursing student, Jeremy, found himself particularly drawn to palliative care as an area of clinical practice. He met many times with Gloria as he began to identify the essential role of palliative care in the field of pediatric oncology which he hoped to enter upon graduation.’’ The acceptance of palliative care as a specialty presents a new demand as well as an opportunity for nurse educators. The challenge for many clinical educators in nursing is integrating palliative care content along with content specific to serious and life-threatening cancers.29 The majority of palliative care patients are referred from oncology, thus nurse educators are challenged to effectively join these two disciplines. With few resources available and the demand to disseminate content high, Gloria and other nurse faculty in the US are still limited in the availability of resources. To disseminate curriculum for faculty, the Clinical Communication Collaborative (CCC) Web site was launched in October 2012. The CCC is a resource Web site that houses clinical communication tools for healthcare professionals. The goal is to support clinicians and educators through communication training, education, and research in order to meet the changing demands of healthcare systems and address patient/family needs in the context of cancer and other serious illnesses. The National Consensus Project for Quality Palliative Care guidelines articulate how vital palliative care communication and delivery is to all aspects of oncology care. The formation and distribution of a curriculum and ancillary resources featuring communication in the practice of palliative care enables the work of faculty training the next generation of clinicians. Uniquely, CCC intentionally places COMFORT at the center of the curriculum. Resources featuring the COMFORT communication curriculum have been tested, peer-reviewed, and taught,28,30,31 and are available to educators on the CCC Web site.
PRACTICING PALLIATIVE CARE COMMUNICATION ‘‘Jeremy graduated and has been working on a pediatric oncology wing of a comprehensive cancer center. The Wu family from Lijiang China arrived to pursue care for their child Anli. At age 7 she had been diagnosed with brain stem glioma
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and Jeremy became Anli’s nurse. She declined rapidly and within days of their arrival lost the ability to walk. The family brought with them traditional healing herbs essential to the beliefs and practices for many Chinese citizens. The smell was strong by Western standards. Almost immediately, other patients and families noticed, and nursing staff began to complain. Pressure from two unit nurses forced the Wu family to dispose of the precious blend of herbs. A day later, the family announced that they were planning to leave the hospital because they were not allowed to include essential components from their own culture. Jeremy consulted an app on his smartphone and located the cultural differences tab with suggested communication strategies, and used the information when he asked the family, ‘‘Can you describe the power of the herbs you brought with you so we can find a way to incorporate them into your care?’’ Culture, team communication, structures of institutional practice, and interpersonal communication across cultures are just some of the moving parts in the Wu family’s distress. The Wu’s profound need to include their own cultural and spiritual practices related to the use of healing herbs was lost to the institution, its clinicians, and patients and families also receiving care on the same floor. Eliciting essential information from a patient and most especially a family is imperative to ensuring the best comfort possible. Palliative care delivered in the context of advanced cancer demands attention to psychosocial and spiritual aspects of dying. Palliative care communication must engage patients (and families) in shared decision-making and include honesty, inquiry, repetition, and empathy.4 Jeremy’s attempt to build a bridge to the Wu’s after conflict had escalated represents a clear effort to preserve quality care for this family. Pediatric oncology presents unique and complex demands for parents who are confronted with the demand of decision-making and its profound implications and burdens.32 Like the Wu’s need to integrate their own cultural practices for spiritual support, nursing communication strategies meant to achieve palliative goals are vital to reducing family suffering. Advance care planning is also a neglected topic by nurses who lack experience, education, and time to address this important communication task.33 Not unlike the Wu’s, barriers to culture, health literacy, and the life world of the patient/family are destructive to the
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trust shared between a nurse and patient/family. Nurses need a range of resources to manage the ongoing challenge of communicating respect and compassion to alleviate the cross-cultural burdens in terminal illness. Health Communication Building Professional Skills is a smartphone or iPad app that presents free, easily accessed prompts to help nurses engage palliative care communication practices (Fig. 1). Built from the COMFORT curriculum housed on the CCC Web site, The ‘Communication Toolkit’ and ‘Difficult Scenarios’ provide over 100 practical skills in just seconds—for nurses like Jeremy who need immediate access to support for challenging communication situations (Table 1). The toolkit feature of the app identifies communication topics for specific nurse needs, such as dealing with family caregivers, health literacy tools, and responding to hard questions. Likewise, a separate component of the app addresses difficult scenarios and provides instruction on what to observe, what to ask, and how to respond based on the context. More than 700 healthcare professionals have downloaded the app since its release in September 2013, primarily within the United States as well as the United Kingdom, Canada, and Australia.
LEARNING PALLIATIVE CARE COMMUNICATION While a core tenet of palliative care is that it is interdisciplinary, courses and other educational programs for team practice and communication are rare,16 Jeremy needed resources to improve
TABLE 1. Health Communication: Building Professional Skills (iOS App) Download
Find Free App from iTunes Store
Navigate
Select communication challenges you are facing Identify communication tools to employ in your context See short video support from CCC faculty about challenges in clinical communication Communicate with patients, families, teams using the support and practical suggestions from the Health Communication App Share your feedback and suggestions with us using our brief pop-up survey
View Engage
Respond
his situation, but had limits on his time in light of his full work schedule. Given that continuing education is valued among hospice and palliative care nurses,17 and self-directed learning packages have been successfully implemented,18 Webbased and online platforms for instruction may be viable options for providing palliative care communication education. E-learning and workplace distance learning have been proffered as feasible educational approaches to meet educational needs in palliative care.14 To meet the growing demand for interprofessional education and resources, two versions of the COMFORT modules were created for continuing education and made available at no cost. Through CECentral, offered through University of Kentucky Healthcare (www.cecentral.com/ comfort), four COMFORT modules were made available (communication, orientation and opportunity, family, and team). Each module consists of a video introduction, brief didactic overview of communication concepts, analysis of recorded real-time interactions among hospice team members, and debriefing of exemplary and missed communication strategies. COMFORT delivery in online modules has been an effective online curricular tool in teaching a variety of disciplines specific palliative care communication strategies.31 After a peer-review process facilitated through the Association of American Medical Colleges, the COMFORT curriculum was selected as an Interprofessional Education Collaborative resource. The curriculum was revised and shaped for interprofessional learners, and the MedEd portal Web site continues to provide COMFORT print materials including teaching instructions (www.mededportal.org/publication/9298).
RESEARCH IMPLICATIONS AND FUTURE NEEDS In addition to structural and health policy changes, increased training of palliative care nurses and oncologists will be critical to meet the growing demand for high-quality palliative care and to meet the vision set by the American Society of Clinical Oncology (ASCO) for full integration of palliative care by 2020.1 Full integration of palliative care will be highly dependent on the nurse’s ability to provide early and ongoing assessment of patient and family palliative care needs, requiring flexible and fluid communication that includes the ability to interpret medical jargon,
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procedures, treatment, manage conflict between family members, and convey support in decisionmaking about oncology care. Multiple education modalities are needed to reach nurses across a variety of care settings and bridge geographic barriers and financial constraints present in the majority of healthcare systems today. The teaching of palliative care communication will be important to easing student concerns, fears, and trepidation about palliative care contexts–a necessary component of encouraging students to focus on a career, commitment, and understanding of palliative care. To accomplish this, educators need curriculum that incorporates building communication skills into palliative care coursework. The short- and long-term goals of the Clinical Communication Collaborative are designed to lay the foundational communication framework to support curriculum development. Retaining professional palliative care staff also continues to be challenging, often leading to high staff turnover.2 Future work is needed to develop curriculum that also addresses the selfcare needs of palliative care staff to aid in retention efforts. The current practice of palliative care communication requires staff to focus on barriers to patient-centered communication and serve in a reactive rather than proactive role. As palliative care programs become more established, future work will need to focus on the delivery process of care and how these processes influence communication with patients and families. Communication barriers, such as the one Jeremy experienced with the Wu family, often have more to do with reactive decisions rather than proactive decision-making. Implementing processes of care that incorporate patient/family communication to determine care concerns and needs at the beginning of care will serve as better models of palliative care and potentially defray costs associated with communication conflicts. Patient and family education, a cornerstone of palliative care communication, should be developed so that communication practices meet
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health literacy needs and include various modes of delivery, such as print and video. Future research should assess the benefits and impact of social media and technology-based communication among staff/palliative care.2 The Clinical Communication Collaborative continues to research, plan, and develop alternative channels to advance knowledge about palliative care communication, facilitating interventions that will improve psychosocial care across healthcare disciplines and systems. Communication solutions such as Health Communication: Building Professional Skills allow easy and unlimited access to theory-based support tools; however, research is needed to determine if nurses will use these tools and how they will impact care delivery. Finally, learning palliative care communication requires interprofessional education as well as team-building activities to sustain team-based approaches to care. Small group and problem-based learning approaches that facilitate the development of team communication and teamwork need to be a focal point of curricular development. Evolved educational programs like COMFORT, although nontraditional, may offer one approach to fostering team-based palliative care. Nursing programs have traditionally relied on nurse-faculty and there is a need to explore using interdisciplinary faculty to teach palliative care communication.12 To meet this challenge, COMFORT facilitator guides need further development for all levels of nurse instruction, including specific graduate nursing programs and multidiscipline teams. Regardless of advances in training and education, the connection between competency and practice has yet to be resolved in clinical communication research. Outcome assessment following immediate conclusion of a training program does not necessarily yield implementation into practice. As noted, patient feedback regarding nurse communication is missing in intervention research.34 In-service support tools and continuing education modalities must reflect integrated, realworld situations with pragmatic solutions.
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