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

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 Guidelines ²⁰ 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 Workers ²³ 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 Certification ²¹ 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).

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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

a

Organizations that sent survey to members.

b

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.

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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.

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.