A virtual coming together unifying collaborators, countries, and contexts

The Worldwide Hospice Palliative Care Alliance (WHPCA) launched WHPCD in 20025 as an annual unified day of action to celebrate and support hospice and palliative care globally. For our conference, the themes of WHPCD are integrated into conference planning to recognize global palliative care trends. The 2023 theme for WHPCD was Compassionate Communities Together for Palliative Care (Worldwide Hospice Palliative Care Alliance 2023)and for 2024 it was Ten Years Since the Resolution: How Are We Doing? (Worldwide Hospice Palliative Care Alliance 2024). See Table 1 for the 2023 and 2024 WHPCD campaign key messages and asks (action items). The 2023 and 2024 events each consisted of 13 interactive sessions addressing diverse hospice and palliative care topics delivered by interprofessional experts (43 faculty in 2023 and 54 in 2024). Topics covered can be found in Tables 2 and 3.

Table 1.

Campaign key messages and asks: World Hospice and Palliative Care Day 2023–2024

Source: Worldwide Hospice Palliative Care Alliance. (2023). Campaign toolkit: compassionate communities together for palliative care. Available at: https://thewhpca.org/resource_category/world-day-toolkit/.

Reprinted with permission from the Worldwide Hospice Palliative Care Alliance.

Table 2.

The 4^th Annual U.S. Celebration of World Hospice and Palliative Care Day conference schedule and session topics.

Table 3.

The 5^th Annual U.S. Celebration of World Hospice and Palliative Care Day Conference schedule and session topics

M.R. Rajagopal, MD, delivered the 2023 opening keynote, speaking on the state of palliative care research in LMICs and the advantages of community participation in care. He called out unique challenges for people with serious illness and poverty, reminding us “care” is not charity, rather the right of the patient and family. The 2024 opening keynote featured Christian Ntizimira, MD, MMsGHD, who spoke on his experience during the Rwandan Genocide Against the Tutsi and how this led to his journey into passionate advocacy for palliative care in Rwanda and internationally. Dr. Ntzimira emphasized “the way people die can reflect how the society lives,” discussing the impact of colonization on how cultures understand the meaning of death (Ntizimira et al. Reference Ntizimira, Deo and Dunne2022; Ntizimira Reference Ntizimira2023). He also offered applications of Ubuntu philosophy, “I am because we are” (also “I am because you are”), or “humanity towards others,” as a salient guide for practicing engaged and interconnected palliative care.

Following the keynote in 2023, the next session showcased palliative change agents “on the ground,” featuring Dingle Spence, MBBS, Dip Pall Med, FRCR (Jamaica), Nahla Gafer, MD, (Sudan), Eve Namisango, PhD (Uganda), and Felicia Marie Knaul, PhD (U.S./Mexico). Discussions ranged from palliative care needs during the humanitarian crisis in Sudan and how to leverage remote, online care when such communications are available, to Mexico’s approach to develop a national action plan to provide palliative care and pain relief services for those without social security coverage. In 2024, a session celebrated the 10-year anniversary since the World Health Assembly passed the only stand-alone resolution on palliative care, calling for all countries to increase access to palliative care as an essential part of comprehensive, high-quality healthcare (World Health Assembly 2014). Various organizations were represented: Stephen R. Connor, PhD, for WHPCA, Alex Daniels for International Children’s Palliative Care Network (ICPCN), Liliana De Lima, MS, MHA, for International Association for Hospice and Palliative Care (IAHPC), Ednin Hamzah, MD, for Hospis Malaysia, Christian Ntizimira, MD, MMsGHD for African Center for Research on End-of-Life Care (ACREOL), and Kathleen M. Foley, MD from MSK. Faculty discussed the importance of the resolution to globally recognize access to palliation as a basic right; to provide safe medication and good quality palliative care to millions of people around the world; and to address social, cultural, and legal barriers and strengthen capacity at country and regional levels.

Both years provided 2 concurrent breakout sessions on day 1. In 2023, one session featured Wendy Lichtenthal, PhD, FT, and Lauren Breen, PhD, on the medicalization of death, dying, and bereavement care. They emphasized the importance of bereavement-conscious practices, especially during transitions of care (Lichtenthal et al. Reference Lichtenthal, Roberts and Donovan2024) and proposed bereavement offerings that should vary based on the level of need rather than a “blanket approach,” creating a vision of a grief-literate society to develop compassionate communities (Breen et al. Reference Breen, Kawashima and Joy2022). The other breakout session featured Danetta Sloan, PhD, MSW, MA, Mrs. Malissa Spaulding, Jennifer Tjia, MD, MS, and Susan DeSanto-Madeya, PhD, RN, on community-based palliative care provision. Drs. DeSanto-Madeya and Tjia discussed the challenges of achieving goal-concordant care for patients living with serious illnesses and provided the Goal Assessment and Prioritization (GAP) Tool as an approach to facilitate goal-concordant communication (DeSanto-Madeya et al. Reference DeSanto-Madeya, Clayton and Fromme2025; Fromme et al. Reference Fromme, Tjia and Clayton2025). Dr. Sloan and Mrs. Spaulding shared results from a current study on advance care planning outcomes with and without faith language (African American Faith Communities Transcending Dementia).

During one session in 2024, Stacy M. Fischer, MD, reviewed the state of psychedelic-assisted therapy research, specifically with psilocybin. Darron Smith, PhD, PA-C, DFAAPA, discussed the lack of Black, Indigenous, and people of color represented in psychedelic research, and Caroline Dorsen, PhD, FNP-BC, addressed how psychedelics may be used to either lessen or perpetuate marginalization for LGBTQIA+ persons, calling for affirming psychedelic and palliative care spaces. The second breakout featured a discussion of palliative care for children with serious neurologic impairment (SNI). Julie Hauer, MD, a leading expert in the field, provided a framework to discuss the impact of SNI with parents using an iterative language framework that facilitates partnership (Hauer and Wolfe Reference Hauer and Wolfe2014). Jori F. Bogetz, MD, followed with innovative ways to elicit parent narratives and foster collaboration to highlight the challenges and joys of caring for children with SNI (Bogetz et al. Reference Bogetz, Trowbridge and Lewis2022). Amy S. Porter, MD, PhD, focused on developing our understanding of “respite” for this population, highlighted the unmet need for their parent caregivers, and described global priorities for pediatric respite research and advocacy (Porter et al. Reference Porter, Snaman and Ananth2024).

Both years featured sessions in which a clinician interviewed a patient and/or family caregiver. In 2023, Andrew Epstein, MD, FAAHPM, spoke with Frank Licciardi, who was treated at MSK and is Chair Emeritus of MSK’s Patient and Family Advisory Council for Quality. They discussed the challenges of deciding where to get cancer treatment, navigating treatment regimens, keeping employment, and trying to maintain “normalcy” while navigating the uncertainty of a serious illness. On day 2 of 2023’s conference, William E. Rosa, PhD, MBE, APRN, spoke with caregiver Amy Hamblin, MA, spouse of the late palliative care pioneer, Dr. J. Randall Curtis. Mrs. Hamblin shared Dr. Curtis’ illness with amyotrophic lateral sclerosis (ALS) and his decision to pursue medical aid in dying at the end of life (Curtis et al. Reference Curtis, Hamblin and Rosa2024). She explained how they navigated medical decisions in the context of values and beliefs as the ALS progressed. They celebrated the legacy of Dr. Curtis in both critical and palliative care.

In 2024, the patient and caregiver conversations were combined into 1 session on day 2, during which Andrew Epstein, MD, FAAHPM, spoke with an MSK patient, Mr. Leslie Shifrin, and his wife, Mrs. Fran Shifrin. Mr. Shifrin spoke about his experience receiving a diagnosis of pancreatic cancer, challenges navigating treatments, and overcoming anxiety and fears about the future. Mr. Shifrin found comfort engaging with the medical team, utilizing counseling and support groups, and being active in the community. Mr. Shifrin remarked on how he found peace with mindfulness along with being treated as a person – beyond the clinical diagnosis – by the clinical team. Mrs. Shifrin described her shock of the diagnosis as being “hit over the head” and how she learned to build trust with the medical team. She shared limited benefits with formal psychosocial supports and how “digging deep” was painful but, over time, has lessened as they both focus on what matters most.

Both years featured presentations from the Journal of Palliative Medicine’s “Palliative Care Specialists Series” (i.e., Top Ten Tips series) moderated by the journal’s Editor-in-Chief, Christopher A. Jones, MD, MBA. In 2023, James Gerhart, PhD, discussed behavioral pain management strategies and reviewed the biopsychosocial framework (Gerhart et al. Reference Gerhart, Ramos and Porter2023). He provided an acronym for participants to remember: CARD – compassion, activity, and reduce stress. Dr. Gerhart shared approaches to support family communication about goals of care; being nonjudgmental to non-adherence; encouraging mindfulness, relationship, sleep, paced activity, and stretching; and addressing mental health symptoms. David Blum, MD, PhD, and Barry Laird, MBChB, MD, MRCGP, clarified the differences between anorexia and cachexia, and emphasized the importance of early screening and proactive treatment in high-risk cancers (Blum et al. Reference Blum, Vagnildhaug and Stene2023). They reviewed approaches to assessing functional and inflammatory status in addition to a multimodal approach to treatment, requiring interprofessional clinicians providing nutritional support, exercise, education, and psychosocial support.

In 2024, Neha Kayastha, MD, and Jason A. Webb, MD, DFAPA, FAAHPM, discussed palliative care for patients with hematologic malignancies, including characteristics unique to the population, obstacles to and benefits of palliative care integration, and strategies for clinicians (Webb et al. Reference Webb, Foxwell and Jones2019). They addressed difficult prognostication and aggressive end-of-life care including use of transfusions in the final days of life. Amelia M. Breyre, MD, NREMT-P, and David H. Wang, MD, FAAHPM, presented on partnering with emergency medical services to improve serious illness care (Wang et al. Reference Wang, Breyre and Brooten2023). Presenters addressed reasons for patients returning to the hospital from hospice and innovative ideas for collaboration with local emergency medical services to meet end-of-life needs. They also called for emergency medical services clinicians to receive end-of-life care training and the need for state/national policies and systems-based changes to build such partnerships.

In 2023, day 2 opened with a session on palliative justice for minoritized and marginalized peoples featuring Afsan Bhadelia, PhD, Katherine Bristowe, PhD, MA, BA (Hons), FHEA Debbie Braybrook, BSc, PhD, and Crystal Brown, MD, MA. Dr. Bhadelia opened the session discussing how healthcare has long failed to incorporate the values of marginalized and minoritized communities who have experienced structural violence and historical trauma (Bhadelia et al. Reference Bhadelia, Oldfield and Cruz2022). Drs. Bristowe and Braybrook discussed creating LGBTQIA+ inclusive environments in palliative care, presenting on their ACCESSCare studies (Bristowe et al. Reference Bristowe, Hodson and Wee2018; Braybrook et al. Reference Braybrook, Bristowe and Timmins2023). Dr. Brown followed by highlighting key points of a qualitative study exploring Black patients’ experience of racism in serious illness through patient–clinician communication and medical decision-making within a racialized health care setting (Brown et al. Reference Brown, Marshall and Snyder2023).

In 2024, day 2 opened with the editors of the textbook Intentionally Interprofessional Palliative Care (Donesky et al. Reference Donesky, Milic and Saks2024), presenting a lens through which all team members approach high-quality holistic palliative care at every level. DorAnne Donesky, PhD ANP-BC ACHPN FHPN, Michelle Marie Milic, MD, Naomi Saks, MA, Mdiv, BCC, and Cara L. Wallace, PhD, LMSW, APHSW-C, spoke to their specific professional roles while also emphasizing how intentionally interprofessional palliative care engages all members to perform at the top of their education and training and involves full team screening and intervention across domains.

The Palliative Story Exchange - a virtual gathering space for clinicians to share and reflect on their own lived experiences - was featured in 2023 and 2024 (Drutchas et al. Reference Drutchas, Rusch and Leiter2024). Alexis E. Drutchas, MD, Richard E. Leiter, MD, MA, and Rachel Rusch, MSW, LCSW, MA, APHSW-C, invited conference participants to share a personal story on something that has moved them in recent months, be it at work or at home. They asked volunteers to speak about their own lived experience rather than traditional “patient cases.” All volunteers exhibited courage and vulnerability sharing moving stories that elicited topics of suffering, loss, grief, and hope.

In 2024, an interprofessional team from the University of California, San Francisco provided a thoughtful and emotional discussion of a Buddhist man at the end of life in the intensive care unit for the special Visiting Virtual Schwartz Center Rounds. Brian Block, MD, started the session with an overview of the case and his role as an intensivist. Catherine Saiki, RN, MSN, AGNP-C, ACHPN, spoke on her role as the hospice nurse practitioner, and Annabelle Bull, BSN, RN, CHPN, described her experience as the bedside nurse caring for a dying patient. Enver Rahmanov, MTS, MA, spoke to the spiritual and religious components of the case, while Kiran Gupta, MD, MPH, moderated the session. All panelists spoke to the human dimension of caring for the patient, sharing their vulnerabilities, feelings, and insights.

Day 2 for both years also featured 2 unique breakout sessions. In 2023, one session was on serious illness communication and another on palliative care for end-stage non-cancer conditions. In the communication breakout, Shunichi Nakagawa, MD, opened by sharing the expansion of VitalTalk in Japan, called “KanwaTalk” (Onishi et al. Reference Onishi, Uemura and Nakagawa2021). Justin Sanders, MD, MSc, followed with a presentation on the development and implementation of a structured guide to support serious illness conversations between oncologists and Black patients (Sanders et al. Reference Sanders, Durieux and Cannady2023). Kristin Levoy, PhD, MSN, RN, OCN, CNE, concluded the breakout with results from a meta-analysis of advance care planning and end-of-life cancer care (Levoy et al. Reference Levoy, Sullivan and Chittams2023). She reviewed the current debates in the field on the value of advance care planning and discussed outcome measures for future research. In the concurrent break-out session on end-stage non-cancer conditions, Shelli Feder, PhD, APRN, FNP-C, ACHPN, presented the state of evidence for palliative care in heart failure, including results of a retrospective study examining palliative care referrals in veterans with heart failure (Feder et al. Reference Feder, Han and Zhan2024). Donald Sullivan, MD, MA, MCR, followed with a presentation on palliative care for serious respiratory conditions, highlighting the quality of life impairments patients suffer and the impact of palliative care on symptoms and end-of-life care (Sullivan et al. Reference Sullivan, Iyer and Enguidanos2022). Cristal Brown, MD, MHS, concluded the session on palliative care in advanced liver disease, including approaches to physical symptom management, psychosocial and emotional support, and communication (Brown et al. Reference Brown, Khan and Parekh2024).

The 2024 breakout sessions featured Rabia S. Atayee, PharmD, BCPS, APh, FAAHPM, Karen Bullock, PhD, LICSW, APHSW-C, Noelle Marie C. Javier, MD, Masako Mayahara, PhD, RN, CHPN, FPCN, FAAN, and Reverend Ramona Winfield, MDiv, BCC, who spoke on leadership experiences as women of color in hospice and palliative care. Sonia Malhotra, MD, MS, FAAP, FAAHPM, moderated the presentations and discussion. Panelists discussed intersectional identities, what has impacted them most as women of color, racism and discrimination in the field, and how they practice advocacy and resilience. The other concurrent breakout session in 2024 featured Laveena Munshi, MD, MSc, Judith Nelson, MD, JD, and Naveen Salins, MD, PhD, FRCP, on the topic of potentially non-beneficial interventions at the end of life (Salins et al. Reference Salins, Rao and Dhyani2024). Dr. Munshi reviewed data on cardio-pulmonary resuscitation at the end-of-life (e.g., frequency and outcomes) and explored clinician and patient beliefs about this intervention (Chawla et al. Reference Chawla, Gutierrez and Rajendram2023). Panelists also discussed the role of ethics and other approaches to managing discordance between clinicians and patients/families along with the emotional impact these discussions have on clinicians.

Both years featured a 70-min session of 5 rapid-fire talks from diverse palliative care specialists and researchers. In 2023, the theme of presentations focused on bringing together compassionate communities. Tracy Fasolino, PhD, APRN, spoke on expanding access to palliative care in rural Appalachia by applying an embedded palliative care model (Fasolino et al. Reference Fasolino, Mayfield and Valentine2024). Aileen Collier, BSc (Hons), PhD, discussed qualitative research on the use of telehealth in Australia and New Zealand while calling out structural inequity regarding access to technology and quality care in rural areas (Collier et al. Reference Collier, Morgan and Swetenham2016). Conference attendees learned about palliative care access in Malaysia from a study led by Malar Velli Segarmurthy, MD, MPH, who described the stark obstacles for Malaysians living in rural areas and opportunities for decentralization of palliative care (Segarmurthy et al. Reference Segarmurthy, Lim and Yeat2024). Alison Wiesenthal, MD, shared expertise on military palliative care in the USA, advantages of concurrent hospice care, combat palliative care, and opportunities for support. Rachel Thienprayoon, MD, MSCS, concluded on organizational compassion in healthcare and ways to operationalize this concept across various settings, within a team and health systems (Thienprayoon Reference Thienprayoon2023).

In 2024, the rapid-fire session theme was “palliative care access and quality.” Daniel Shalev, MD, described the prevalence of mental health comorbidities, identified barriers for palliative care clinicians to provide mental healthcare, and provided systems-based goals for mental health integration into palliative care (Wozniak et al. Reference Wozniak, Shalev and Reid2021). Amanda Kastrinos, PhD, followed with a discussion of the “hidden” caregiving generation: young adult caregivers and how the experience impacts their developmental trajectory and mental health (Kastrinos et al. Reference Kastrinos, Fisher and Mullis2022). She presented a novel, tailored young adult caregiving intervention to initiate difficult family conversations and reduce patient and family distress. Next, Cristiane Bergerot, PhD, presented on the value of geriatric assessment for older adults with metastatic cancer undergoing active treatment in a severely resource-constrained setting (Dale et al. Reference Dale, Klepin and Williams2023). Megan R. Miller, PhD, RN, then followed with a presentation on her mixed methods research examining relationships between spirituality, pain, and pain-related catastrophizing among patients with cancer receiving active treatment (Miller et al. Reference Miller, Addicott and Rosa2023). Lastly, Columba Thomas, MD, OP, closed the session with a discussion of palliative sedation at the end of life. He described its role in managing delirium and existential suffering, while detailing gaps in the research and sharing approaches to overcome challenges with sedation at the end of life (Thomas et al. Reference Thomas, Kulikowksi and Breitbart2024).

For both years, the conference concluded with a closing keynote in honor of Dr. Richard Payne, former Chief of the Pain and Palliative Care Service at MSK on the application of principles of diversity, equity, and inclusion in palliative care. In 2023, Corey L. Kennard, MACM, spoke on 3 “silent screams” of patients: how people want to understand, to be understood, and to be heard. He remarked on the need for clinicians to understand patients as people beyond their medical diagnoses, discussed cultural influences in healthcare, and shared approaches to culturally appropriate communication. He called on clinicians to build trust with patients by exploring spiritual beliefs, stating “trust is a human-to-human experience, not a patient-to-healthcare worker experience.” In 2024, Sonia Malhotra, MD, MS, FAAP, FAAHPM, described the intersectionality of culture, race, and spirituality while describing the impact of racial disparities on access and quality of healthcare. She told a personal story of advocating for her father to receive end-of-life care that met his wishes and aligned with his cultural values. Dr. Malhotra described approaches to build trust not only with patients and their families but with each other as clinicians. She called on the need to do better, asking, “Do we have to burn others to see the light?” and provided strategies to become an ally for minoritized patients, families, and colleagues.

Outcomes

Conference CME evaluations were collected and reviewed for each year. The post-conference evaluation was completed by 30% of attendees in 2023 (n = 229 responses of 763 registrants) and 24% in 2024 (n = 423 responses of 1729 registrants). Professionals represented included nurses, nurse practitioners, social workers, physicians, physician assistants, chaplains, pharmacists, physical therapists, occupational therapists, psychologists, mental health counselors, integrative medicine practitioners, students, and administrative and research personnel working in various clinical and academic settings, including medical or acute care units, outpatient clinics, long-term care, inpatient and home hospices, inpatient palliative care units, community-based and home care services, and academic and university settings.

In 2023 and 2024, most respondents (86% and 85%, respectively) identified as a clinician who manages or cares for patients, with the largest representation from nursing professionals (50% in 2023 and 56% in 2024). Most respondents rated the overall format and length of the program as good or excellent (100% and 99%, respectively, for both years). Most respondents (93% in 2023 and 92% in 2024) thought the activity incorporated principles of equity, diversity, and inclusion to the extent possible and most (86% in 2023 and 89% in 2024) reported the conference supported interprofessional care practice. Most respondents (93% in 2023 and 92% in 2024) reported being very satisfied with the CME activity overall (scored ≥8 on a 0–10 scale). Participants commented, “It was the most heartfelt of any CME activity I’ve attended,” and “The mix of science and humanism moved me,” in addition to repetitive acknowledgment of the importance of free registration.

Participants committed to change in areas of patient and interprofessional communication, patient education, teamwork roles and responsibilities, treatment, quality improvement, diagnosis and screening, and safety, among other areas. Some specific examples from comments included: [I will]

• • “utilize a lens of trauma-informed care to provide high quality communication and care for my patients”;

• • “look for opportunities to have conversation[s] about innovation in the implementation of patient-centered, culturally concordant care practices”;

• • “focus on increasing my use of non-pharmacologic interventions for help with symptom management with the goal of improving my patient’s quality of life”; and

• • “remember that all people are fighting a battle and that even clinicians are personally affected by the issues and illnesses that we see every day in our patients.”

Most respondents (95% in 2923 and 97% in 2024) reported the conference will help them better engage with other members of the interprofessional team in the care of patients. Examples included: “[I will] recognize the distinction between multidisciplinary versus interprofessional communication,” and “[I will] continue to advocate for more intentional interprofessional communication and express my appreciation for everyone’s role.”