Shaping the Future: Recommendations from a Palliative Social Work Summit

Abstract

Background:

Palliative social workers play a critical role in serious illness care by addressing the biopsychosocial, spiritual, existential, and cultural needs of patients and families. Despite substantial professional infrastructure and contributions to equity and person-centered care, the profession faces persistent challenges related to recognition, funding, and visibility. These challenges are intensified by widening health inequities, policy threats to access to care, and national workforce shortages.

Methods:

To assess the current landscape and advance a coordinated professional agenda for palliative social workers in the United States, the Shaping the Future: Advancing Palliative Social Work Summit convened national leaders in palliative and health social work research, practice, and advocacy. A national survey of social workers providing serious illness care (N = 350), an ongoing scoping review, and a two-day convening of leaders representing 15 organizations were used to develop a consensus-driven professional agenda. Survey data and Summit discussions were analyzed descriptively and thematically, with findings validated by participants.

Results:

Participants articulated a unified vision for the future of palliative social work, identifying priorities including formal recognition of social workers as essential interprofessional team members, advancement of equity-driven care models, development of a diverse and sustainable workforce, and strengthened cross-organizational collaboration. Consensus emerged around the need for coordinated advocacy, shared resources, targeted research investment, and public-facing strategies to increase visibility and impact.

Conclusion:

The Summit demonstrates a model for advancing palliative social work through intentional alignment collective leadership and coordinated action. Aligning shared priorities positions the field to strengthen its professional foundation and expand its impact across practice research education and policy. Sustained investment in palliative social work leadership and infrastructure is essential to ensuring the profession’s long-term viability and its capacity to meet the complex needs of people living with serious illness their families and communities.

Keywords

health social work health equity interprofessional care palliative social work serious illness care social drivers of health

Introduction

The landscape of health care in the United States is shifting rapidly. Policy and practice changes accelerate barriers to access for essential services, workforce shortages strain clinical teams, and long-standing disparities rooted in structural racism and systemic disinvestment undermine patient outcomes.^1–4 For individuals living with serious illnesses, the synergistic biopsychosocial, cultural, and spiritual dimensions of care^5,6—navigating complex systems, addressing social drivers of health, managing changing family dynamics, facing anticipatory grief and loss, and confronting structural and economic barriers—are not ancillary but central to health and quality-of-life outcomes.^7–10 Importantly, these domains of care are social work areas of expertise.¹⁰ Amid converging policy, workforce, and demographic pressures, social work advocacy and leadership in palliative care are essential; however, the field faces persistent challenges in substantive recognition, institutional investment, and sufficient funding.^10–12 Together, these factors threaten social work’s capacity to fully realize its intended role and capacity within serious illness care.^10–13

Palliative social work in the United States emerged through interprofessional specialty-building efforts grounded in the centrality of psychosocial care across hospitals, hospice settings, outpatient clinics, and community-based programs.^12,14,15 The Open Society Institute’s Project on Death in America Social Work Leadership Awards supported early efforts to build the scholarly, clinical, and leadership foundations of the profession.¹² Two early social work leadership summits (2002, 2005) established core competencies and practice standards,^16–18 which were later formalized by the National Association of Social Workers.¹⁹ Concurrently, the development of national infrastructure, including the Social Work Hospice & Palliative Care Network, the Social Work Network in Palliative and End-of-Life professional listserv, and the Journal of Social Work in End-of-Life and Palliative Care, fostered a cohesive community of practice, education, and research.¹² Importantly, the 2004 National Consensus Project Clinical Practice Guidelines²⁰ codified social work as a core discipline within interprofessional palliative care teams.

Building on this foundation, the field of palliative social work has advanced through expanded education, training, and credentialing.^12,14,21 Foundational texts such as the Oxford Textbook of Palliative Social Work^9,22 and Palliative Care: A Guide for Health Social Workers²³ provide comprehensive guidance for education, advocacy, research, and practice. Specialized training programs such as the Zelda Foster Studies Program,²⁴ Smith School of Social Work Palliative and End of Life Program,²⁵ and Educating Social Workers in Palliative and End-of-Life Care (ESPEC)²⁶ expanded evidence-informed education across MSW and post-master’s training. The Advanced Palliative and Hospice Social Work Certification²¹ has further strengthened the specialty by establishing a rigorous, exam-based certification aligned with national standards. Collectively, these efforts have positioned palliative social work as a distinct specialty with strong clinical, educational, and organizational capacity, contributing meaningfully to the growth and impact of palliative care.^11,12,14

Yet this professional infrastructure has not translated into commensurate influence or authority.^10–12 Although palliative social workers provide essential clinical care and leadership across psychological, social, spiritual, existential, and cultural domains, and contribute to a growing research base, their expertise remains underrepresented in policy, funding, and leadership forums.^10,12,27 Social work input and expertise were notably absent from a recent journal series focused on the psychosocial aspects of palliative care, representing a missed opportunity to incorporate the profession’s contributions to whole-person care and research.^27,28 Together, limited recognition in policy, workforce, and resource pressures underscores the need for coordinated advocacy and a unified professional voice.

Shaping the Future: Advancing Palliative Social Work Summit

The Shaping the Future: Advancing Palliative Social Work Summit was conceived to address the gap between social work’s potential capacity in palliative care research and practice and its actual influence. The initial idea to highlight the research and scholarly contributions of palliative social work originated at a gathering of social work scholars during the annual retreat of the Sojourns Scholars Leadership Program.²⁹ What began as a dialogue on social work scholarship evolved into a broader vision: a national convening of leaders in palliative social work research and practice to assess the profession and chart a path forward.

The American Cancer Society (ACS) provided the original grant funding to the Boston University School of Social Work (BUSSW) for the development of the Summit. BUSSW and Cambia Health Foundation provided additional funding and staff resources. The Summit’s aims were to assess the current landscape, identify key barriers and opportunities, and develop actionable recommendations to advance research, practice, and advocacy efforts. Unlike earlier national summits that focused primarily on establishing the profession’s foundation and legitimacy, this Summit sought to amplify social work’s contributions and leverage existing infrastructure to drive coordinated, systemic change through a call to action.

The Summit, convened in June 2025, occurred at a critical inflection point for social work. Ongoing changes to federal policy, including the weakening of key Affordable Care Act protections, the expansion of limited-benefit insurance plans, and efforts to restrict Medicaid eligibility have threatened the landscape of health care access.^2,30,31 Moral distress among social workers has intensified as political and policy shifts increasingly conflict with the profession’s core commitments to human dignity, self-determination, equity, inclusion, and social justice.³⁰ Within this context, the Summit aimed not only to advance palliative social work but also to reaffirm social workers’ essential role in shaping equitable, ethical, and person-centered quality care for people living with, and affected by, serious illness. The vision was to transform the profession’s accomplishments into collective power to amplify systemic impact.

Since the Summit, new policy developments have underscored the urgency of this work. In January 2026, the U.S. Department of Education issued a regulatory proposal excluding social work from the definition of a “professional student” for loan treatment, which would leave social work students subject to lower federal loan limits than those in recognized professional programs.³² This policy could substantially reduce the affordability of graduate social work education and weaken the workforce pipeline, particularly for individuals from underserved communities. These challenges reinforce the need for a coordinated call to action across the profession.³³

Methods

The Summit was intentionally designed as both a convening and a catalyst for action, translating collective expertise into a national roadmap for advancing the profession. An ad hoc committee of six palliative social work leaders (M.G., B.L.J., J.K., V.L., A.O., and S.O.-G.) met monthly between September 2024 and June 2025 to develop a national survey and plan the Summit agenda. Drawing on survey findings and an ongoing scoping review, this process informed a two-day, professionally facilitated, consensus-building convening aimed at identifying priorities, strengthening shared understanding, and creating actionable recommendations to guide the profession forward.

Participant selection

Fifteen national organizations that support the research and practice of palliative and health social work were identified. Formal invitations were sent to each organization’s board chair or special interest group leaders requesting that one representative attend the Summit. Organizations could also sponsor an additional representative. This model was chosen to ensure fairness, transparency, and cross-organizational alignment. In total, 20 leaders representing 15 organizations attended the event (see Table 1).

Table 1.

Participating Organizations and Representatives

Participating organizations and representatives
American Cancer Society—D. Pulli	Gerontological Society of America^a—A. Latimer
Association for Gerontology Education in Social Work^a—C. Wallace, S. Wladkowski	National Association of Social Workers^a—J. Harris
Association of Oncology Social Workers^a—J. Magas	National Hospice and Palliative Care Organization^a—N. Flowers
Assoc of Pediatric Oncology Social Workers^a—W. Iwata	Palliative & End-of-Life Listserv^a—T. Altilio
Biller Family Foundation—S. Hedlund	Palliative Care Consultant—V. Leff^b
Boston University School of Social Work—D. Benton-Johnson, A. O’Donnell^b, B. Jones^b	Palliative Story Exchange—R. Rusch
Cambia Health Foundation^a—J. Currin-McCulloch, D. Sloan, J. Kwak^b	Social Work Hospice/Palliative Care Network^a—C. Onderdonk, J. Curd
Center to Advance Palliative Care—K. Bullock	Society for Social Work Leadership in Health Care—L. Knight
Coalition for Social Work and Health^a—Shirley Otis-Green^b	Jennifer Luna Consulting—J. Luna

Organizations that sent survey to members.

Planning Committee Members.

Data foundations

Scoping review

A scoping review of the peer-reviewed literature on palliative and end-of-life social work interventions was performed following Preferred Reporting Items for Systematic Reviews and Meta Analysis (PRISMA) guidelines. The review mapped the extent and nature of existing research, identified knowledge gaps, and highlighted opportunities for future investigation. Initial findings from the review were presented during the Summit. A formal publication is in progress.

National survey

A cross-sectional Qualtrics survey (Supplementary Data) was designed to capture diverse perspectives on workforce needs and clinical practices. Using both quantitative and qualitative questions, the survey explored four important areas: (1) emerging trends impacting social work in serious illness care; (2) workforce threats and opportunities; (3) practice innovations; and (4) inter-organizational collaboration and advocacy priorities. The survey was disseminated electronically through nine membership organizations and the Listserv (Table 1). Each organization/listserv received a unique link and distributed the survey three times between April 7 and May 2, 2025. Although no incentives were given, a total of 350 respondents participated.

Summit proceedings

Survey findings provided the empirical foundation for the Summit agenda (Table 2). It opened with a presentation of key survey findings, followed by structured, facilitated discussions to clarify the profession’s strengths and opportunities for leadership and collaboration. Plenary presentations, breakout discussions, and consensus-building activities moved participants from reflection to action, informing shared priorities and recommendations for the profession’s future.

Table 2.

Pre-Summit Survey Domains with Summit Agenda

National survey questions	Summit agenda topics
Q1—Emerging Trends: Impact of policy and political changes on health social work	Day 1—Opening Context: Introductions, urgency of action, focus areas
Q2—Threats and Opportunities: Evolving policy changes and effects on the profession	Day 1—Framing the Landscape: Survey review, tension points
Q4—Priority Gaps: Areas of research, policy, and practice requiring greater focus	Day 1—Consensus Building: Identification of priority gaps, small-group deliberation
Q5/6—Best Practices and Resources: Examples of scalable institutional policies and programs	Day 1—Shared Learning: Best practices panel, plenary debrief
Q10—Organizational Collaboration: Strategies for national organizations	Day 2—Building the Future: Collaboration strategies, action planning,

Summit agenda was intentionally structured to mirror the survey domains.

Data synthesis and validation

National survey

Data were analyzed descriptively using NVivo. Frequencies and percentages were calculated for all categorical variables, and scaled-response questions were summarized based on the proportion of respondents who rated an item 7 or higher, indicating high perceived impact. Open-ended responses were thematically analyzed to contextualize the initial interpretation of quantitative findings.

Summit proceedings

Summit sessions were documented by a team of Boston University MSW students. Notes, flip charts, and Post-it notes were photographed and transcribed. Findings were analyzed thematically to consolidate major themes and key recommendations. To ensure accuracy and collective agreement, summaries of group discussions and working group goals were circulated post-Summit for participant review and validation.

Findings

National survey

The pre-Summit survey provided a critical foundation for the agenda, capturing the perspectives of 350 respondents with extensive clinical experience (44% with more than 20 years in practice), most of whom were female (88%) and White (82%). Future publications will report these findings in detail; a broad summary is provided below.

Respondents identified changes limiting access to health care (88%) and threats to social work reimbursement (77%) as the most consequential forces shaping the future of palliative social work. More than 91% called for increased infrastructure investment to support social work as a core profession in serious illness care, and 88% identified the need for stronger organizational backing and career structures. Qualitative comments underscored how workforce shortages, hiring delays, health system consolidation, and the loss of dedicated social work departments drive unsustainable caseloads, erode discipline-specific supervision, and limit career pathways. Respondents also urged greater unity among professional organizations through coordinated advocacy, joint conferences, and shared educational offerings. They highlighted the need for a centralized repository to help practitioners, administrators, health system leaders, and policymakers articulate scope of practice, demonstrate value, share resources, and support workforce development and hiring decisions.

Summit proceedings

Survey findings informed the Summit agenda (Table 2) and were presented at the opening of the meeting. Participants then engaged in structured, facilitated discussions to clarify the profession’s strengths and identify opportunities for collective leadership and collaboration. Plenary, breakout, and consensus-building sessions moved participants from reflection to action, shaping shared priorities, working groups, and recommendations for the profession’s future.

Summit themes

Four cross-cutting themes emerged, each underscoring the distinctive value social workers bring to serious illness care.

Commitment to equity and social justice

Social workers are uniquely positioned to confront structural racism, ageism, ableism, and other discriminatory practices within health systems, professional communities, and society at large. Participants affirmed that social work’s grounding in equity, anti-oppressive practice, community partnership, and sustained engagement is essential to high-quality palliative care. The Summit emphasized the need to advance equity-driven models of care, address social drivers of health, and position social workers as essential contributors wherever decisions about access, quality, and justice are made.

Organizational influence and interprofessional collaboration

Participants acknowledged that social workers in serious illness care are served by multiple specialized professional organizations that compete for members and limited funding, unintentionally diluting the profession’s collective influence. Strengthening cross-organizational alignment and communication was identified as a powerful strategy for sharing resources and elevating social work’s influence within broader interprofessional movements.

Strengthening and sustaining the workforce

Summit discussions underscored social work’s commitment to a clinically grounded, macro-informed, and diverse workforce prepared to meet the complex needs of people living with serious illness. Strengthening pathways from MSW education through advanced palliative care certification was identified as essential to ensuring a skills-ready workforce. Participants emphasized the importance of sustainable workloads, clear staffing guidelines, career ladders, strong supervision, equitable hiring practices, and leadership development as foundational infrastructure to support workforce retention and high-quality care. Fully integrating social workers into interprofessional teams was viewed as critical to leveraging the profession’s unique expertise.

Demonstrating palliative social work’s expertise and contributions

Participants voiced the need to elevate and quantify the contribution of palliative social work to research, person-centered outcomes, family and caregiver support, interprofessional team functioning, and equity-oriented care. Participants highlighted storytelling, outcomes research, and community-engaged scholarship as strategies to make social work’s value more visible across health systems and policy arenas.

Summit outcomes

Together, these themes informed concrete next steps to translate shared priorities into sustained collective action. The Summit’s timing highlighted that health care is in a period of profound transition, one in which social workers’ values, skills, and leadership are urgently needed. Participants recognized the dual imperative of maintaining professional integrity amid growing financial pressures while ensuring that social work’s values remain central to serious illness care across settings and populations. This recognition led to a commitment to strengthen, align, and amplify leadership within palliative social work and to coalesce organizational power to elevate the voices of current and future generations.

Formation of working groups

After intensive engagement and reflection on a pathway forward, participants expressed a commitment to ongoing collaboration beyond the convening. Although this was not an original goal of the Summit, participants expressed a strong desire to continue amplifying social work’s voice. Four working groups emerged to translate the Summit’s discussions into coordinated action: identity and infrastructure, interorganizational collaboration, public awareness, communication, visibility, and workforce development.

Call to action

To advance the work initiated by the Summit and to create sustainable systemic change, professional organizations, academic programs, funders, and the broader health care community are called upon to join in advancing the following strategic priorities:

Advance Collective Advocacy

In recognition of palliative care’s commitment to interprofessional practice, ensure that social work is present wherever serious illness care and quality of life are discussed.

Support the development of joint policy briefs, position statements, and coordinated lobbying efforts to protect access to serious illness care, secure reimbursement for social work services, and defend Medicaid and Medicare as essential to the public good.

Strengthen Workforce Pathways

In recognition of the need for a skills-ready workforce, partner with the Council on Social Work Education and schools of social work to ensure high-quality, consistent MSW preparation in palliative and serious illness care. Strengthen workforce pathways from MSW education through advanced certification, including paid field placements and internships, structured mentorship, and transparent post-licensure pathways.

Establish a centralized, accessible repository of advocacy and workforce development resources (i.e., job descriptions, evidence of social work’s impact, clinical guidelines, policy statements, billing guidance, key resources, and licensing information) to support clinicians, policymakers, students, educators, and administrators.

Advance Equity and Workforce Diversity

Commit to building a workforce that reflects the racial, ethnic, and cultural diversity of the communities we serve.

Partner with schools of social work and organizations to recruit and retain clinicians from underrepresented backgrounds while supporting equitable compensation, leadership development, and mentorship across all levels of practice, research, policy, and education.

Promote Professional Interest and Elevate Public Visibility

Educate the public and the professional community about the essential role of social work in serious illness care.

Launch a series of coordinated messaging campaigns (using social media, movies, television, and storytelling venues) that compellingly captivate various audiences (including health systems, policy makers, and the public) and demonstrate the value of palliative social work.

Invest in Social Work Research and Evidence Development

Prioritize the inclusion of social work researchers in palliative care initiatives, particularly those addressing mental/behavioral health, psychosocial, cultural, and equity-focused outcomes.

Identify funding opportunities for multicenter studies, outcomes research, and evidence-informed staffing standards that demonstrate the clinical outcomes and economic value of social work in serious illness care.

Build upon special interest groups at national conferences, such as the Society Social Work Research, American Association of Hospice and Palliative Medicine (AAHPM), and Hospice and Palliative Nursing Association (HPNA), to expand and amplify the reach of social work research, professional development, and knowledge dissemination.

Make Membership Affordable and Accessible

Enhance the voice of social workers across organizations serving serious illness care. Explore creative opportunities for a variety of “sister” organization discounts and partnerships to create more affordable continuing education opportunities. Advocate for bundled membership models, joint conferences, and cross-organizational continuing education to reduce financial barriers and promote inclusivity.

Collaborate with interprofessional partners such as the Center to Advance Palliative Care, HPNA, and AAHPM to offer affordable membership and conference registration so that social work expertise is fully represented in education, research, practice, and policy forums.

Summary

By advancing these recommendations, the palliative social work community can partner with interprofessional colleagues, researchers, organizational leaders, administrators, and policymakers to improve the quality of care and quality of life for all people impacted by serious illness. The Summit has become a catalyst for a coordinated movement to ensure that this call to action is actualized. Given palliative care’s standing as a model of interprofessional, collaborative practice and research,^20,34 the disconnect between best practices that formally recognize social work’s essential role and the ongoing lack of structural investment risks undermining the integrity and effectiveness of the field.

The architects of palliative care recognized social workers as core members of the interprofessional team, essential to the reliable delivery of quality care and to addressing the multidimensional suffering associated with serious illness. With a systems perspective and a commitment to equity, social workers are well positioned to address social drivers of health and ensure that the voices of patients and families remain central to the evolution of health care. As Diane Meier, MD, wrote in the Foreword of the Oxford Textbook of Palliative Social Work:

“Our [social work] field offers a reminder to medicine of the need to return to its “true-north” with a focus on providing personalized, contextualized care from a whole person perspective. And as healthcare moves from the hospital into the community, our palliative social work colleagues’ commitment to social justice becomes ever more critical.

Palliative social workers are essential in furthering this health care transformation—whether providing evidence-informed interventions, modeling nuanced communication, advocating for policies that address the social determinants of health, engaging in innovative research, or seeking resources, as often what patients need most is food, housing, money, transportation, and human care and support.”³⁵

The palliative social work field has grown substantially over the past decades and now faces a clear imperative: transform collaboration into coordinated action, research into demonstrable impact, and shared values into lasting systems change. Through the combined efforts of the Summit participants and the broader profession, palliative social work is poised not only to strengthen its own professional foundation but also to shape the future of compassionate, person-centered, family-focused, culturally congruent, and goal-concordant care across the continuum of serious illness. As one participant summarized, “We have our charge—now we must act.”

Authors’ Contributions

Conceptualization: A.O., B.L.J., M.G., S.O.-G., V.L., and J.K.; methodology: A.O., B.L.J., and J.K.; investigation: A.O., M.G., and S.O.-G.; writing—original draft: A.O.; writing—review and editing: all authors; and supervision: S.O.-G. and B.L.J.

Footnotes

Acknowledgments

The authors wish to acknowledge the Summit participants and the national organizations represented for their leadership and contributions. The authors thank Jennifer Luna, MSSW, CSWM, for her role in Summit planning, support, and facilitation, and BUSSW students Jennifer Miller and Celia Connolly, LCSW, for their assistance with Summit note-taking and support.

Ethical Considerations

Ethical review for the pre-Summit participant survey was conducted by the Boston University Institutional Review Board, which determined the study to be exempt from full IRB review (Protocol # 7972). All procedures were conducted in accordance with applicable ethical standards.

Consent to Participate

Informed consent to participate was obtained electronically from all survey respondents prior to survey completion.

Data Availability Statement

The data supporting this study’s findings are not publicly available due to confidentiality concerns and ongoing publications. Aggregate findings may be available from the corresponding author upon reasonable request.

Author Disclosure Statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding Information

This work was supported by the American Cancer Society through grant funding to the BUSSW. Additional funding and staff resources were provided by the BUSSW and the Cambia Health Foundation.

Supplemental Material

Abbreviations Used

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Shaping the Future: Recommendations from a Palliative Social Work Summit—A National Call to Action

Abstract

Background:

Methods:

Results:

Conclusion:

Keywords

Introduction

Shaping the Future: Advancing Palliative Social Work Summit

Methods

Participant selection

Data foundations

Scoping review

National survey

Summit proceedings

Data synthesis and validation

National survey

Summit proceedings

Findings

National survey

Summit proceedings

Summit themes

Commitment to equity and social justice

Organizational influence and interprofessional collaboration

Strengthening and sustaining the workforce

Demonstrating palliative social work’s expertise and contributions

Summit outcomes

Formation of working groups

Call to action

Summary

Authors’ Contributions

Footnotes

Acknowledgments

Ethical Considerations

Consent to Participate

Data Availability Statement

Author Disclosure Statement

Funding Information

Supplemental Material

Abbreviations Used

References

Supplementary Material