Journal of Social Work in End-of-Life & Palliative Care, 10:309–321, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online DOI: 10.1080/15524256.2014.975319
INVITED ARTICLES Enhancing Collaborative Leadership in Palliative Social Work in Oncology BARBARA JONES School of Social Work, The University of Texas at Austin, Austin, Texas, USA
FARYA PHILLIPS School of Social Work, The University of Texas at Austin, Austin, Texas, USA
BARBARA ANDERSON HEAD Interdisciplinary Program for Palliative Care and Chronic Illness, University of Louisville School of Medicine, Louisville, Kentucky, USA
SUSAN HEDLUND Patient=Family Support Services, Knight Cancer Institute, Oregon Health & Sciences University, Portland, Oregon, USA
ANGELA KALISIAK Compass Oncology and Providence Cancer Center Palliative Care Program, Portland, Oregon, USA
BRAD ZEBRACK School of Social Work, The University of Michigan, Ann Arbor, Michigan, USA
LISA KILBURN Division of Nursing Research & Education, City of Hope, Duarte, California, USA
SHIRLEY OTIS-GREEN Division of Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, California, USA
The Institute of Medicine (IOM) Report—Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs—provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights Received 26 June 2014; accepted 5 September 2014. Address correspondence to Barbara Jones, PhD, MSW, School of Social Work, The University of Texas at Austin, 1925 San Jacinto Boulevard D3500, Austin, TX 78712-0358, USA. E-mail: [email protected] 309
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the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology. KEYWORDS collaborative leadership, institutional change, interprofessional care, oncology social work, palliative care
INTRODUCTION The delivery of psychosocial-spiritual oncology care for patients and their families in the United States remains uneven and inadequate (Institute of Medicine [IOM], 2008, 2013). Supporting oncology patients and families in a rapidly evolving health care environment requires a cadre of competent and compassionate social work leaders who are committed to the development of programs that ensure equity in access to comprehensive quality care across the lifespan (Altilio & Otis-Green, 2011). The IOM (2008) Report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, identified a series of recommendations to support oncology patients and their families and noted the need for targeted professional education if the United States is to meet recommended standards of care. Oncology social workers serve critical roles as members of the interdisciplinary team providing psychosocial care to patients and families. Adapting to new health care regulations and meeting the palliative care needs of our growing population of older Americans lends urgency to the demand for social work leadership across all aspects of the health care delivery system (IOM, 2013). The Patient Protection and Affordable Care Act requires that behavioral health services be included in all essential benefits packages, thus increasing the need for advanced training of the health care social work workforce, including oncology and palliative care social workers (Andrews, Darnell, McBride, & Gehlert, 2013). Recognition of the psychosocial needs of oncology patients and families has also led to a growing focus on the ongoing training of social workers in psychosocial oncology and palliative and end-of-life care (Csikai & Jones, 2011). The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project is a federally funded professional education and training program that was created in direct response to the 2008 IOM Report. This article provides an
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overview of palliative care in clinical oncology and highlights two palliative care projects initiated by outstanding oncology social work leaders as a result of their ExCEL experience. This article demonstrates how investments in advanced training of social work leaders can transform and enhance palliative oncology care.
PALLIATIVE CARE IN CLINICAL ONCOLOGY The Center to Advance Palliative Care (CAPC, 2012) defines palliative care as: specialized medical care for people with serious illnesses, focusing on providing patients with relief of symptoms, pain, and stress-whatever the diagnosis, with an explicit goal to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers, and other specialists who work with a patient’s other doctors to provide an extra layer of support, and can be provided together with curative treatment. (paras. 1–2)
Palliative care concurrent with oncology care is endorsed by the American Society of Clinical Oncology (ASCO) as a required quality care standard because it results in better quality of life, improved symptom management, and equal or better survival at an affordable cost (Smith et al., 2012). There is an emerging body of evidence demonstrating the benefits of palliative care (Bakitas et al., 2009; El-Jawahri, Greer, & Temel, 2011; Engelhardt et al., 2006). In addition to robust improvements in reported quality of life, a recent landmark study has shown a modest survival benefit for advanced lung cancer patients receiving concurrent palliative care (Temel et al., 2010). Other important endorsements of palliative care have come from the National Comprehensive Cancer Network (NCCN) and the American College of Surgeon’s Commission on Cancer (CoC). The NCCN recommends screening every cancer patient for palliative care needs, and recommends palliative care for patients with uncontrolled symptoms; moderate to severe distress associated with cancer diagnosis; serious comorbid physical or psychosocial conditions; life expectancy of less than one year; and patient and family concerns (NCCN, 2011). The CoC recommends that palliative care services be available either on site or by referral from time of diagnosis and continuously as needed (CoC, 2012). The CoC also recommends that the interdisciplinary palliative care team includes behavioral health specialists such as social workers (CoC, 2012). Increasingly, oncology outpatient clinics are furthering the integration of palliative care into the treatment of patients with ‘‘incurable’’ cancers (Cheng, King, Alesi, & Smith, 2013). Introducing palliative care early in a continuum of treatment and as a normative adjunct to conventional cancer care can enhance the quality of life for all those affected by cancer, increase
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coordination of care, and decrease symptoms and suffering in patients and families (Strand, Kamdar, & Carey, 2013). The goals of palliative care, such as improving quality of life through comprehensive symptom management and patient and family support, are ideally applied throughout the trajectory of a serious illness (Strand et al., 2013). There is growing recognition that increased intensity of invasive interventions in late stages of illness does not necessarily prolong survival or reliably improve quality of life (Wright et al., 2008). Social workers play a critical role in all aspects of palliative care including family-centered decision making, identification and reduction of symptom distress, psychosocial and behavioral health needs, and coordinated care (Altilio & Otis-Green, 2011). Social workers, like other members of the transdisciplinary team, report the need for advanced clinical and leadership training to help them provide optimal psychosocial oncology and palliative care. The ExCEL project, based upon the 2008 IOM recommendations, has created opportunities for social workers to develop new and innovative approaches for facilitating the use of palliative care in the cancer setting.
ExCEL PROJECT ExCEL was developed, in part, to address oncology social workers’ need for increased knowledge in areas such as medical communication, interdisciplinary teamwork (Kovacs & Bronstein, 1999; Kramer, Christ, Bern-Klug, & Francoeur, 2005), grief and loss and palliative care training (Gwyther et al., 2005; Kovacs & Bronstein, 1999; Kramer et al., 2005), and the provision of psychosocial-spiritual care—especially at end of life (Otis-Green, 2011; Otis-Green & Ferrell, 2010). The ExCEL in Social Work project is a multiyear National Cancer Institute-funded national educational program to prepare 400 competitively selected oncology social workers to improve the delivery of psychosocial care (Otis-Green et al., 2014). ExCEL grew from the ACE Project, an earlier National Cancer Institute-funded national program that provided advocacy and leadership skills to social workers, psychologists, and spiritual care providers focusing upon a transdisciplinary palliative care perspective (Otis-Green et al., 2009; Otis-Green, Yang, & Lynne, 2013). The ExCEL curriculum was based upon current research and evidence-informed practice in oncology social work (Otis-Green et al., 2014). Designed by leading psychosocial oncology researchers and educators, the curriculum focused upon six core competencies identified and described in the IOM report: distress screening and assessment; leadership and advocacy; collaboration and teamwork; family caregiver support and family conferencing; culturally sensitive practice; and the use evidenceinformed interventions. The education program was funded in 2010 to deliver eight offerings, twice annually for four years, in a collaborative partnership
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between the City of Hope National Medical Center. Participants attend a 1.5-day preconference workshop held prior to the annual meetings of the two leading professional organizations devoted exclusively to representing oncology social workers—the Association of Oncology Social Work (AOSW) and the Association of Pediatric Oncology Social Workers (APOSW). A key element of the ExCEL program encourages oncology social workers to become more effective agents of system change, and participants are provided with mentorship to develop and refine an institutional enhancement goal which is implemented over the 12 months following participation in ExCEL. As part of the training, expert faculty facilitate small group sessions to encourage participants to construct and refine S.M.A.R.T. (S ¼ Strategic; M ¼ Measurable; A ¼ Achievable; R ¼ Realistic; T ¼ Time-framed) goals as a practical tool for planning institutional change (Conzemius & O’Neill, 2006). To date, participants from 45 states and five foreign countries have attended ExCEL. Postcourse evaluation data from the first three cohorts (N ¼ 308) demonstrate the feasibility and positive impact of the project. Thirty-two of the 165 participants who completed 12-month follow-up evaluations indicated that their institutional change projects sought to develop new palliative care programs addressing the psychosocial needs of patients and families. Some of these involved enhancing collaborations with colleagues to provide culturally congruent resources, developing mechanisms for more coordinated delivery of supportive services, or creating educational programs for staff regarding the social work role. Programs targeted the special needs of family caregivers; neonates; minorities; adolescents and young adults; gay, lesbian, bisexual, transgender, and questioning patients; non-English-speaking populations; veterans; and other historically underserved communities.
PALLIATIVE CARE PROJECTS INITIATED BY ExCEL PARTICIPANTS Social work leaders who are selected to attend the ExCEL training are charged with identifying a system change or program development project that they would like to implement in their setting. In addition to evidence-based information on clinical interventions, the ExCEL training provides leadership capacity building training that allows participants to develop a plan to achieve their goals over the course of the following year. Participants work with ExCEL faculty and staff during the training and throughout the year to successfully enact their identified plan of action. The two projects described below are exemplars of how participants used the training to create informed system change and the implemented enhancements of existing palliative care programs.
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Project 1 Project 1 is the Interdisciplinary Curriculum for Oncology Palliative Education (iCOPE)–Louisville School of Medicine—Barbara Head, PhD, CHPN, ACSW, FPCN, Associate Professor, Interdisciplinary Program for Palliative Care and Chronic Illness. In 2010, the University of Louisville School of Medicine received a grant from the National Cancer Institute to develop and test an interdisciplinary curriculum for palliative care in cancer. Dubbed the iCOPE (Interdisciplinary Curriculum for Oncology Palliative Education) project, the grant enables the planning and implementation of a curriculum for medical, nursing, social work, and clinical pastoral care students that would teach palliative oncology care as well as interdisciplinary teamwork and would become mandatory within the student’s degree program and. Dr. Head was one of the social work educators for the iCOPE project and attended ExCEL in May 2011. The ExCEL curriculum taught many of the same concepts and skills the iCOPE faculty wanted to teach to the social work students, and offered Dr. Head an opportunity to strategize ways to enhance health care providers’ understanding of the role of social work on interdisciplinary palliative care teams. ExCEL offered evidenced-informed education on social work role function, psychosocial screening, professionalism, collaboration, systems thinking, cultural competence, and care across the life span, family=caregiver support, and interprofessional communication skills; these were the very skills and concepts the iCOPE faculty wished to integrate into their curriculum. To date, 47 social work students have completed the iCOPE curriculum as well as 80 medical students, 211 nursing students, and 22 clinical pastoral education students. The iCOPE curriculum consists of four didactic modules, a clinical experience, a reflective writing assignment and sharing of one’s reflection in an interdisciplinary group of students, and a face-to-face care planning session in which teams of students from the four disciplines develop an interdisciplinary plan of care for a standardized patient. Content from the ExCEL curriculum was integrated throughout these activities to impact the future practice of the social work students as well as to shape the understanding of the other disciplines related to the role, expertise, and practice of the team social worker. What follows are some examples of the integration of ExCEL content into this interdisciplinary curriculum: .
In a module on the interdisciplinary team, the role of the team social worker is demonstrated via exemplar interdisciplinary care plans. This content enables social work students to better understand their role on the team as well as demonstrating to students of other disciplines the social worker’s contribution to patient-centered, team-based care.
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In three other case-based modules, the role of the social worker is integrated throughout the scenarios demonstrating interdisciplinary care of the palliative oncology patient. Evidence-informed psychosocial screening is depicted in the use of the Distress Thermometer in one module. As taught in ExCEL, the social worker is shown to be culturally aware and explores the implications of culture in relation to the experience of the patient and family. Social work expertise in family=caregiver support and the special concerns of underserved patients are demonstrated in module content. Through clinical experiences and reflective writing, the social work student demonstrates systems thinking and professionalism. Most importantly, the social work student is prepared through the modules and this experience to share with other students expressing their professionalism and the unique skills and knowledge. Because ExCEL teaches such concepts, the iCOPE educators were better able to mentor the students and encourage their growth as professionals. Standardized patient scenarios of social worker interactions with the patient, family, and team were developed for use as background for student to use in their assignment to develop an interdisciplinary plan of care. Scripting these scenarios was the job of the educators. The social work educator who attended ExCEL was able to integrate skills learned at ExCEL into developing these scenarios therefore assuring that the social work skills demonstrated were evidence-informed.
Preliminary results from the iCOPE project reveal that students show substantial improvement in their understanding of and skills related to palliative interdisciplinary care and their ability to relate to and understand the roles of other health care disciplines. Frequently, students of the nonsocial work disciplines comment that they previously did not understand the social worker’s role or know the totality of what social workers could offer to patients and the interdisciplinary team. Both participation in the ExCEL program plus the accountability requirements related to reporting progress on goals were extremely helpful in assuring that the iCOPE curriculum paralleled the ExCEL effort to ‘‘enhance the clinical and leadership skills necessary for oncology social workers to act as system change agents.’’
Project 2 Project 2 is Northwest Cancer Specialists CARES: Coordinated, Advocacy, Resources, Education and Support: A palliative care program in an outpatient oncology practice—Susan Hedlund, LCSW, OSW-C; Consultant, NW Cancer Specialists (participant of both the ACE Project and ExCEL programs).
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Susan Hedlund attended both ExCEL and the ACE Project: Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education. The programs both encouraged her to identify a S.M.A.R.T. goal that the she would later implement in her practice setting. Ms. Hedlund was a consultant with the Northwest Cancer Specialists (NCS—now Compass Oncology), and the practice had identified end-of-life care planning as an area intended for quality improvement. The Northwest Cancer Specialists is the largest community-based practice of oncologists in Portland, Oregon and Southwest Washington. Affiliated with the national U.S. Oncology network, the practice has over 40 medical, radiation, and gynecologic oncology providers (Hedlund, 2013). In an early practice self-assessment conducted in 2007, areas identified for evaluating practice trends included: end-of-life care planning and knowledge of patient preferences; hospice referral patterns; and administration of chemotherapy in the last 2 weeks of life. Internal data from NCS showed average hospice utilization compared with oncologists in the Pacific Northwest and highlighted a lack of standardized practices for advance care planning. Physician leadership shared the findings with all providers, who committed to a Quality Improvement initiative focused on improving patient care at the end of life and, more broadly, on anticipating and supporting care transitions throughout the cancer illness continuum. Thus, NCS created the CARES Program (Coordinated Advocacy, Resources, Education, and Support)—for those facing serious cancer illness and for their caregivers. Initial objectives were to develop a series of skill-building, educational seminars for physicians, nurses, and all office staff to become more aware of and competent in team-based communication and palliative care principles. Ms. Hedlund and team engaged a committee of interested physicians to advise them; this committee met almost monthly for the duration of the project. They also surveyed nonphysician staff and conducted a focus group for women in an advanced cancer support group to advise the project. They provided education at three pilot sites on shared decision making, communication skills, advance care planning, boundaries, self-care, and bereavement. In further capacity-building, Ms. Hedlund and team received extramural funding through two grants—one from the Portland Inter-Hospital Physicians Association and another from CareOregon, a state insurance program for low-income Oregonians—to develop educational materials. The grants supported the creation of a guide for advance care planning for appropriate patients receiving care at the clinics. Coinciding with National Health Decisions Day (April 19), they offered a series of advance care planning seminars in each of the pilot sites. The team also implemented Clinical Care Conferences at the three pilot sites. Staff (notably, not usually the physicians themselves) identified patients at transition, or those with complex symptom management. All staff was encouraged to suggest patients to be considered at the Clinical Care
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Conferences. Over time, physician engagement in (and appreciation for the value of) care conferences grew significantly, resulting in more thoughtful planning and support for patient and family, goal identification, and greater focus on symptom management, as well as improved communication and empathy across disciplines. In a previously published project review, 75% of NCS nurses and physicians reported increased access to support and resources for their patients; 54% of the nurses reported greater confidence in their skills with patients at the end of life (Hedlund, 2013). Only 3% of patients discussed at the Clinical Care Conferences received chemotherapy in the last 14 days of life. This is markedly lower than reported in many other studies of chemotherapy at the end of life (Adams et al., 2011; Jones, 2001; Murillo & Koeller, 2006). Of patients discussed at care conferences, 53% had advance directives in the electronic medical record at the time of their deaths. The numbers of people receiving hospice at the time of death did not increase significantly, nor did time on hospice appear to increase in this initial study. In the early stages of the project it was important to identify practice leaders to champion the work. While overall hospice referrals did not initially increase, the reduction in numbers of patients receiving chemotherapy at the end of life was substantial, as was staff satisfaction in communication and enhanced clinical skills in patients with advanced disease. An important and lasting benefit of this project was its role in driving the integration of social work into the practice, which previously did not employ social workers. Clinical Care Conferences continue and are facilitated by the social workers; conferences have been expanded from the initial three pilot sites to include all five major clinic practice sites. A full time palliative care physician has now also been well-integrated into the practice (delivering care at two sites); this would have been difficult to implement without interdisciplinary support. The multiple sites now share one full-time and two part-time oncology social workers (all three of whom bring extensive hospice and palliative care professional experience) to assist in patient support, care planning, and ongoing awareness of patient preferences and palliative care offerings. Additionally, they facilitate staff grief support and assist with continuity when patients are hospitalized or when a hospitalized patient becomes a new referral.
CONCLUSION As oncology care continues to improve and palliative care becomes more integrated into care throughout the patient care experience, oncology and palliative care social workers will have increased leadership in implementing
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interventions to improve the family and patient experience. Social workers are well-situated to be leaders in the growing health care environment due to their specific focus on the patient and family in context, skills in communication, and holistic view of patient care. The ExCEL program identifies social workers committed to improving their practice and building their leadership capacity and supports them to further their own professional goals in oncology social work. The successful projects highlighted here are two examples of how participants from the ExCEL project led to specific program development and demonstrated social work leadership skills applicable to creating institutional change to improve the delivery of quality oncology and palliative care. These two projects report that staff morale and communication improved as a result of oncology social workers initiating and facilitating care conferences for patients at key transition periods. Importantly, these sessions also highlight the social work expertise in cancer care. As noted, it is essential to continue to promote awareness of the value of palliative care, advance care planning, and the work of establishing clinical care goals with patients. A growing body of evidence suggests that educating staff about the value of proactive palliative care delivered throughout a continuum of care and not just at the end of life will promote quality of life, enhance symptom management, and enable care providers to better address the biopsychosocial-spiritual aspects of a patient’s illness experience (Dahlin, 2013; Temel et al., 2010). Given the shortage of available palliative care-certified physicians, recent literature has focused on potential strategies to meet the expected needs of a growing population of patients with serious illness, including cancer patients (Cheng et al., 2013; Quill & Abernethy, 2013; Weissman, 2012). These authors strongly suggest that the solution likely lies in raising the above-noted skills of all oncology practitioners in ‘‘generalist’’ palliative care, while simultaneously establishing access to ‘‘specialist’’ palliative care and defining appropriate guidelines for referral to this care. Additionally, we recommend the inclusion of social workers on palliative care teams to promote optimal person-centered and family-focused care. Increasing palliative care in oncology practices is not just a one-time experience, but rather an ongoing practice to enhance staff and provider awareness. Quality of life and the honoring of wishes for our patients and their loved ones will be a likely result. As health care reform is enacted, there will be increased need for trained social workers in the interprofessional team to provide distress screening, care coordination, integrated behavioral health services and evidence-based interventions to improve psychosocial outcomes. Oncology social workers are poised to be leaders in improving palliative care for patients with cancer and their families with the ultimate goal of improving patient and family-centered care.
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ACKNOWLEDGMENTS The authors wish to acknowledge the contributions of their ExCEL in Social Work team: Betty Ferrell, PhD, MA, FAAN, CHPN; Marcia Grant, RN, PhD, FAAN; Terry A. Altilio, MSW, ACSW, LCSW; Kathryn Smolinski, MSW, JD; Stacia Wagner, MSW, EdD; Stacy Remke, MSW, LICSW, ACHP-SW; Katherine Walsh, PhD, MSW, LMSW; Eunice Yang, MPH; Kelly Greer, BS; Stephanie Taylor, MSW; and Maggie Johnson. The authors thank the growing ExCEL community for their commitment to collaborative leadership in the provision of quality oncology palliative care. Also, Dr. Kalisiak and Susan Hedlund would like to thank the Portland Inter-Hospital Physician Association and the Care Oregon Care Support and System Innovation (CSSI) programs for their grant support of the Compass Oncology Program.
FUNDING The ExCEL in Social Work grant described in this paper was supported by funding from the National Cancer Institute (grant number R25-CA138291, PI: Shirley Otis-Green). The iCOPE Project was supported by Grant Number R25-CA148005 from the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute or NIH.
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INVITED ARTICLES Enhancing Collaborative Leadership in Palliative Social Work in Oncology BARBARA JONES School of Social Work, The University of Texas at Austin, Austin, Texas, USA
FARYA PHILLIPS School of Social Work, The University of Texas at Austin, Austin, Texas, USA
BARBARA ANDERSON HEAD Interdisciplinary Program for Palliative Care and Chronic Illness, University of Louisville School of Medicine, Louisville, Kentucky, USA
SUSAN HEDLUND Patient=Family Support Services, Knight Cancer Institute, Oregon Health & Sciences University, Portland, Oregon, USA
ANGELA KALISIAK Compass Oncology and Providence Cancer Center Palliative Care Program, Portland, Oregon, USA
BRAD ZEBRACK School of Social Work, The University of Michigan, Ann Arbor, Michigan, USA
LISA KILBURN Division of Nursing Research & Education, City of Hope, Duarte, California, USA
SHIRLEY OTIS-GREEN Division of Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, California, USA
The Institute of Medicine (IOM) Report—Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs—provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights Received 26 June 2014; accepted 5 September 2014. Address correspondence to Barbara Jones, PhD, MSW, School of Social Work, The University of Texas at Austin, 1925 San Jacinto Boulevard D3500, Austin, TX 78712-0358, USA. E-mail: [email protected] 309
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the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology. KEYWORDS collaborative leadership, institutional change, interprofessional care, oncology social work, palliative care
INTRODUCTION The delivery of psychosocial-spiritual oncology care for patients and their families in the United States remains uneven and inadequate (Institute of Medicine [IOM], 2008, 2013). Supporting oncology patients and families in a rapidly evolving health care environment requires a cadre of competent and compassionate social work leaders who are committed to the development of programs that ensure equity in access to comprehensive quality care across the lifespan (Altilio & Otis-Green, 2011). The IOM (2008) Report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, identified a series of recommendations to support oncology patients and their families and noted the need for targeted professional education if the United States is to meet recommended standards of care. Oncology social workers serve critical roles as members of the interdisciplinary team providing psychosocial care to patients and families. Adapting to new health care regulations and meeting the palliative care needs of our growing population of older Americans lends urgency to the demand for social work leadership across all aspects of the health care delivery system (IOM, 2013). The Patient Protection and Affordable Care Act requires that behavioral health services be included in all essential benefits packages, thus increasing the need for advanced training of the health care social work workforce, including oncology and palliative care social workers (Andrews, Darnell, McBride, & Gehlert, 2013). Recognition of the psychosocial needs of oncology patients and families has also led to a growing focus on the ongoing training of social workers in psychosocial oncology and palliative and end-of-life care (Csikai & Jones, 2011). The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project is a federally funded professional education and training program that was created in direct response to the 2008 IOM Report. This article provides an
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overview of palliative care in clinical oncology and highlights two palliative care projects initiated by outstanding oncology social work leaders as a result of their ExCEL experience. This article demonstrates how investments in advanced training of social work leaders can transform and enhance palliative oncology care.
PALLIATIVE CARE IN CLINICAL ONCOLOGY The Center to Advance Palliative Care (CAPC, 2012) defines palliative care as: specialized medical care for people with serious illnesses, focusing on providing patients with relief of symptoms, pain, and stress-whatever the diagnosis, with an explicit goal to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers, and other specialists who work with a patient’s other doctors to provide an extra layer of support, and can be provided together with curative treatment. (paras. 1–2)
Palliative care concurrent with oncology care is endorsed by the American Society of Clinical Oncology (ASCO) as a required quality care standard because it results in better quality of life, improved symptom management, and equal or better survival at an affordable cost (Smith et al., 2012). There is an emerging body of evidence demonstrating the benefits of palliative care (Bakitas et al., 2009; El-Jawahri, Greer, & Temel, 2011; Engelhardt et al., 2006). In addition to robust improvements in reported quality of life, a recent landmark study has shown a modest survival benefit for advanced lung cancer patients receiving concurrent palliative care (Temel et al., 2010). Other important endorsements of palliative care have come from the National Comprehensive Cancer Network (NCCN) and the American College of Surgeon’s Commission on Cancer (CoC). The NCCN recommends screening every cancer patient for palliative care needs, and recommends palliative care for patients with uncontrolled symptoms; moderate to severe distress associated with cancer diagnosis; serious comorbid physical or psychosocial conditions; life expectancy of less than one year; and patient and family concerns (NCCN, 2011). The CoC recommends that palliative care services be available either on site or by referral from time of diagnosis and continuously as needed (CoC, 2012). The CoC also recommends that the interdisciplinary palliative care team includes behavioral health specialists such as social workers (CoC, 2012). Increasingly, oncology outpatient clinics are furthering the integration of palliative care into the treatment of patients with ‘‘incurable’’ cancers (Cheng, King, Alesi, & Smith, 2013). Introducing palliative care early in a continuum of treatment and as a normative adjunct to conventional cancer care can enhance the quality of life for all those affected by cancer, increase
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coordination of care, and decrease symptoms and suffering in patients and families (Strand, Kamdar, & Carey, 2013). The goals of palliative care, such as improving quality of life through comprehensive symptom management and patient and family support, are ideally applied throughout the trajectory of a serious illness (Strand et al., 2013). There is growing recognition that increased intensity of invasive interventions in late stages of illness does not necessarily prolong survival or reliably improve quality of life (Wright et al., 2008). Social workers play a critical role in all aspects of palliative care including family-centered decision making, identification and reduction of symptom distress, psychosocial and behavioral health needs, and coordinated care (Altilio & Otis-Green, 2011). Social workers, like other members of the transdisciplinary team, report the need for advanced clinical and leadership training to help them provide optimal psychosocial oncology and palliative care. The ExCEL project, based upon the 2008 IOM recommendations, has created opportunities for social workers to develop new and innovative approaches for facilitating the use of palliative care in the cancer setting.
ExCEL PROJECT ExCEL was developed, in part, to address oncology social workers’ need for increased knowledge in areas such as medical communication, interdisciplinary teamwork (Kovacs & Bronstein, 1999; Kramer, Christ, Bern-Klug, & Francoeur, 2005), grief and loss and palliative care training (Gwyther et al., 2005; Kovacs & Bronstein, 1999; Kramer et al., 2005), and the provision of psychosocial-spiritual care—especially at end of life (Otis-Green, 2011; Otis-Green & Ferrell, 2010). The ExCEL in Social Work project is a multiyear National Cancer Institute-funded national educational program to prepare 400 competitively selected oncology social workers to improve the delivery of psychosocial care (Otis-Green et al., 2014). ExCEL grew from the ACE Project, an earlier National Cancer Institute-funded national program that provided advocacy and leadership skills to social workers, psychologists, and spiritual care providers focusing upon a transdisciplinary palliative care perspective (Otis-Green et al., 2009; Otis-Green, Yang, & Lynne, 2013). The ExCEL curriculum was based upon current research and evidence-informed practice in oncology social work (Otis-Green et al., 2014). Designed by leading psychosocial oncology researchers and educators, the curriculum focused upon six core competencies identified and described in the IOM report: distress screening and assessment; leadership and advocacy; collaboration and teamwork; family caregiver support and family conferencing; culturally sensitive practice; and the use evidenceinformed interventions. The education program was funded in 2010 to deliver eight offerings, twice annually for four years, in a collaborative partnership
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between the City of Hope National Medical Center. Participants attend a 1.5-day preconference workshop held prior to the annual meetings of the two leading professional organizations devoted exclusively to representing oncology social workers—the Association of Oncology Social Work (AOSW) and the Association of Pediatric Oncology Social Workers (APOSW). A key element of the ExCEL program encourages oncology social workers to become more effective agents of system change, and participants are provided with mentorship to develop and refine an institutional enhancement goal which is implemented over the 12 months following participation in ExCEL. As part of the training, expert faculty facilitate small group sessions to encourage participants to construct and refine S.M.A.R.T. (S ¼ Strategic; M ¼ Measurable; A ¼ Achievable; R ¼ Realistic; T ¼ Time-framed) goals as a practical tool for planning institutional change (Conzemius & O’Neill, 2006). To date, participants from 45 states and five foreign countries have attended ExCEL. Postcourse evaluation data from the first three cohorts (N ¼ 308) demonstrate the feasibility and positive impact of the project. Thirty-two of the 165 participants who completed 12-month follow-up evaluations indicated that their institutional change projects sought to develop new palliative care programs addressing the psychosocial needs of patients and families. Some of these involved enhancing collaborations with colleagues to provide culturally congruent resources, developing mechanisms for more coordinated delivery of supportive services, or creating educational programs for staff regarding the social work role. Programs targeted the special needs of family caregivers; neonates; minorities; adolescents and young adults; gay, lesbian, bisexual, transgender, and questioning patients; non-English-speaking populations; veterans; and other historically underserved communities.
PALLIATIVE CARE PROJECTS INITIATED BY ExCEL PARTICIPANTS Social work leaders who are selected to attend the ExCEL training are charged with identifying a system change or program development project that they would like to implement in their setting. In addition to evidence-based information on clinical interventions, the ExCEL training provides leadership capacity building training that allows participants to develop a plan to achieve their goals over the course of the following year. Participants work with ExCEL faculty and staff during the training and throughout the year to successfully enact their identified plan of action. The two projects described below are exemplars of how participants used the training to create informed system change and the implemented enhancements of existing palliative care programs.
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Project 1 Project 1 is the Interdisciplinary Curriculum for Oncology Palliative Education (iCOPE)–Louisville School of Medicine—Barbara Head, PhD, CHPN, ACSW, FPCN, Associate Professor, Interdisciplinary Program for Palliative Care and Chronic Illness. In 2010, the University of Louisville School of Medicine received a grant from the National Cancer Institute to develop and test an interdisciplinary curriculum for palliative care in cancer. Dubbed the iCOPE (Interdisciplinary Curriculum for Oncology Palliative Education) project, the grant enables the planning and implementation of a curriculum for medical, nursing, social work, and clinical pastoral care students that would teach palliative oncology care as well as interdisciplinary teamwork and would become mandatory within the student’s degree program and. Dr. Head was one of the social work educators for the iCOPE project and attended ExCEL in May 2011. The ExCEL curriculum taught many of the same concepts and skills the iCOPE faculty wanted to teach to the social work students, and offered Dr. Head an opportunity to strategize ways to enhance health care providers’ understanding of the role of social work on interdisciplinary palliative care teams. ExCEL offered evidenced-informed education on social work role function, psychosocial screening, professionalism, collaboration, systems thinking, cultural competence, and care across the life span, family=caregiver support, and interprofessional communication skills; these were the very skills and concepts the iCOPE faculty wished to integrate into their curriculum. To date, 47 social work students have completed the iCOPE curriculum as well as 80 medical students, 211 nursing students, and 22 clinical pastoral education students. The iCOPE curriculum consists of four didactic modules, a clinical experience, a reflective writing assignment and sharing of one’s reflection in an interdisciplinary group of students, and a face-to-face care planning session in which teams of students from the four disciplines develop an interdisciplinary plan of care for a standardized patient. Content from the ExCEL curriculum was integrated throughout these activities to impact the future practice of the social work students as well as to shape the understanding of the other disciplines related to the role, expertise, and practice of the team social worker. What follows are some examples of the integration of ExCEL content into this interdisciplinary curriculum: .
In a module on the interdisciplinary team, the role of the team social worker is demonstrated via exemplar interdisciplinary care plans. This content enables social work students to better understand their role on the team as well as demonstrating to students of other disciplines the social worker’s contribution to patient-centered, team-based care.
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In three other case-based modules, the role of the social worker is integrated throughout the scenarios demonstrating interdisciplinary care of the palliative oncology patient. Evidence-informed psychosocial screening is depicted in the use of the Distress Thermometer in one module. As taught in ExCEL, the social worker is shown to be culturally aware and explores the implications of culture in relation to the experience of the patient and family. Social work expertise in family=caregiver support and the special concerns of underserved patients are demonstrated in module content. Through clinical experiences and reflective writing, the social work student demonstrates systems thinking and professionalism. Most importantly, the social work student is prepared through the modules and this experience to share with other students expressing their professionalism and the unique skills and knowledge. Because ExCEL teaches such concepts, the iCOPE educators were better able to mentor the students and encourage their growth as professionals. Standardized patient scenarios of social worker interactions with the patient, family, and team were developed for use as background for student to use in their assignment to develop an interdisciplinary plan of care. Scripting these scenarios was the job of the educators. The social work educator who attended ExCEL was able to integrate skills learned at ExCEL into developing these scenarios therefore assuring that the social work skills demonstrated were evidence-informed.
Preliminary results from the iCOPE project reveal that students show substantial improvement in their understanding of and skills related to palliative interdisciplinary care and their ability to relate to and understand the roles of other health care disciplines. Frequently, students of the nonsocial work disciplines comment that they previously did not understand the social worker’s role or know the totality of what social workers could offer to patients and the interdisciplinary team. Both participation in the ExCEL program plus the accountability requirements related to reporting progress on goals were extremely helpful in assuring that the iCOPE curriculum paralleled the ExCEL effort to ‘‘enhance the clinical and leadership skills necessary for oncology social workers to act as system change agents.’’
Project 2 Project 2 is Northwest Cancer Specialists CARES: Coordinated, Advocacy, Resources, Education and Support: A palliative care program in an outpatient oncology practice—Susan Hedlund, LCSW, OSW-C; Consultant, NW Cancer Specialists (participant of both the ACE Project and ExCEL programs).
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Susan Hedlund attended both ExCEL and the ACE Project: Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education. The programs both encouraged her to identify a S.M.A.R.T. goal that the she would later implement in her practice setting. Ms. Hedlund was a consultant with the Northwest Cancer Specialists (NCS—now Compass Oncology), and the practice had identified end-of-life care planning as an area intended for quality improvement. The Northwest Cancer Specialists is the largest community-based practice of oncologists in Portland, Oregon and Southwest Washington. Affiliated with the national U.S. Oncology network, the practice has over 40 medical, radiation, and gynecologic oncology providers (Hedlund, 2013). In an early practice self-assessment conducted in 2007, areas identified for evaluating practice trends included: end-of-life care planning and knowledge of patient preferences; hospice referral patterns; and administration of chemotherapy in the last 2 weeks of life. Internal data from NCS showed average hospice utilization compared with oncologists in the Pacific Northwest and highlighted a lack of standardized practices for advance care planning. Physician leadership shared the findings with all providers, who committed to a Quality Improvement initiative focused on improving patient care at the end of life and, more broadly, on anticipating and supporting care transitions throughout the cancer illness continuum. Thus, NCS created the CARES Program (Coordinated Advocacy, Resources, Education, and Support)—for those facing serious cancer illness and for their caregivers. Initial objectives were to develop a series of skill-building, educational seminars for physicians, nurses, and all office staff to become more aware of and competent in team-based communication and palliative care principles. Ms. Hedlund and team engaged a committee of interested physicians to advise them; this committee met almost monthly for the duration of the project. They also surveyed nonphysician staff and conducted a focus group for women in an advanced cancer support group to advise the project. They provided education at three pilot sites on shared decision making, communication skills, advance care planning, boundaries, self-care, and bereavement. In further capacity-building, Ms. Hedlund and team received extramural funding through two grants—one from the Portland Inter-Hospital Physicians Association and another from CareOregon, a state insurance program for low-income Oregonians—to develop educational materials. The grants supported the creation of a guide for advance care planning for appropriate patients receiving care at the clinics. Coinciding with National Health Decisions Day (April 19), they offered a series of advance care planning seminars in each of the pilot sites. The team also implemented Clinical Care Conferences at the three pilot sites. Staff (notably, not usually the physicians themselves) identified patients at transition, or those with complex symptom management. All staff was encouraged to suggest patients to be considered at the Clinical Care
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Conferences. Over time, physician engagement in (and appreciation for the value of) care conferences grew significantly, resulting in more thoughtful planning and support for patient and family, goal identification, and greater focus on symptom management, as well as improved communication and empathy across disciplines. In a previously published project review, 75% of NCS nurses and physicians reported increased access to support and resources for their patients; 54% of the nurses reported greater confidence in their skills with patients at the end of life (Hedlund, 2013). Only 3% of patients discussed at the Clinical Care Conferences received chemotherapy in the last 14 days of life. This is markedly lower than reported in many other studies of chemotherapy at the end of life (Adams et al., 2011; Jones, 2001; Murillo & Koeller, 2006). Of patients discussed at care conferences, 53% had advance directives in the electronic medical record at the time of their deaths. The numbers of people receiving hospice at the time of death did not increase significantly, nor did time on hospice appear to increase in this initial study. In the early stages of the project it was important to identify practice leaders to champion the work. While overall hospice referrals did not initially increase, the reduction in numbers of patients receiving chemotherapy at the end of life was substantial, as was staff satisfaction in communication and enhanced clinical skills in patients with advanced disease. An important and lasting benefit of this project was its role in driving the integration of social work into the practice, which previously did not employ social workers. Clinical Care Conferences continue and are facilitated by the social workers; conferences have been expanded from the initial three pilot sites to include all five major clinic practice sites. A full time palliative care physician has now also been well-integrated into the practice (delivering care at two sites); this would have been difficult to implement without interdisciplinary support. The multiple sites now share one full-time and two part-time oncology social workers (all three of whom bring extensive hospice and palliative care professional experience) to assist in patient support, care planning, and ongoing awareness of patient preferences and palliative care offerings. Additionally, they facilitate staff grief support and assist with continuity when patients are hospitalized or when a hospitalized patient becomes a new referral.
CONCLUSION As oncology care continues to improve and palliative care becomes more integrated into care throughout the patient care experience, oncology and palliative care social workers will have increased leadership in implementing
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interventions to improve the family and patient experience. Social workers are well-situated to be leaders in the growing health care environment due to their specific focus on the patient and family in context, skills in communication, and holistic view of patient care. The ExCEL program identifies social workers committed to improving their practice and building their leadership capacity and supports them to further their own professional goals in oncology social work. The successful projects highlighted here are two examples of how participants from the ExCEL project led to specific program development and demonstrated social work leadership skills applicable to creating institutional change to improve the delivery of quality oncology and palliative care. These two projects report that staff morale and communication improved as a result of oncology social workers initiating and facilitating care conferences for patients at key transition periods. Importantly, these sessions also highlight the social work expertise in cancer care. As noted, it is essential to continue to promote awareness of the value of palliative care, advance care planning, and the work of establishing clinical care goals with patients. A growing body of evidence suggests that educating staff about the value of proactive palliative care delivered throughout a continuum of care and not just at the end of life will promote quality of life, enhance symptom management, and enable care providers to better address the biopsychosocial-spiritual aspects of a patient’s illness experience (Dahlin, 2013; Temel et al., 2010). Given the shortage of available palliative care-certified physicians, recent literature has focused on potential strategies to meet the expected needs of a growing population of patients with serious illness, including cancer patients (Cheng et al., 2013; Quill & Abernethy, 2013; Weissman, 2012). These authors strongly suggest that the solution likely lies in raising the above-noted skills of all oncology practitioners in ‘‘generalist’’ palliative care, while simultaneously establishing access to ‘‘specialist’’ palliative care and defining appropriate guidelines for referral to this care. Additionally, we recommend the inclusion of social workers on palliative care teams to promote optimal person-centered and family-focused care. Increasing palliative care in oncology practices is not just a one-time experience, but rather an ongoing practice to enhance staff and provider awareness. Quality of life and the honoring of wishes for our patients and their loved ones will be a likely result. As health care reform is enacted, there will be increased need for trained social workers in the interprofessional team to provide distress screening, care coordination, integrated behavioral health services and evidence-based interventions to improve psychosocial outcomes. Oncology social workers are poised to be leaders in improving palliative care for patients with cancer and their families with the ultimate goal of improving patient and family-centered care.
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ACKNOWLEDGMENTS The authors wish to acknowledge the contributions of their ExCEL in Social Work team: Betty Ferrell, PhD, MA, FAAN, CHPN; Marcia Grant, RN, PhD, FAAN; Terry A. Altilio, MSW, ACSW, LCSW; Kathryn Smolinski, MSW, JD; Stacia Wagner, MSW, EdD; Stacy Remke, MSW, LICSW, ACHP-SW; Katherine Walsh, PhD, MSW, LMSW; Eunice Yang, MPH; Kelly Greer, BS; Stephanie Taylor, MSW; and Maggie Johnson. The authors thank the growing ExCEL community for their commitment to collaborative leadership in the provision of quality oncology palliative care. Also, Dr. Kalisiak and Susan Hedlund would like to thank the Portland Inter-Hospital Physician Association and the Care Oregon Care Support and System Innovation (CSSI) programs for their grant support of the Compass Oncology Program.
FUNDING The ExCEL in Social Work grant described in this paper was supported by funding from the National Cancer Institute (grant number R25-CA138291, PI: Shirley Otis-Green). The iCOPE Project was supported by Grant Number R25-CA148005 from the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute or NIH.
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