World Hospice and Palliative Care Day

WHPCD is a unified day of action to celebrate and support hospice and palliative care around the world (WHPCA, 2020a). The first WHPCD was in 2005 and has been celebrated every year since on the second Saturday each October. Voices for Hospices is a wave of concerts taking place on WHPCD every 2 years. Events are held throughout the world in order to highlight the importance of palliative care in every country. Each year a different theme is chosen to highlight an important aspect of palliative care. Recent themes included: “My Care, My Right” (WHPCA, 2019); “Because I Matter” (WHPCA, 2018); “Don't Leave Those Suffering Behind” (WHPCA, 2017); and “Living & Dying in Pain: It Doesn't Have to Happen” (WHPCA, 2016). The 2020 WHPCD theme was “My Care, My Comfort” (WHPCA, 2020b; Table 1). Most years, between 150 and 200 events are held in around 70 countries worldwide and are tracked on the WHPCA website, making WHPCD one of the most successful world health days. The aims of the annual WHPCD are to:

• • Share WHPCA's vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak about the issues.

• • Elevate awareness and understanding of the medical, social, practical, and spiritual needs of people living with a life-limiting illness and their families.

• • Raise funds to support and develop hospice and palliative care services around the world (WHPCA, 2020a).

Table 1. Key messages of the 2020 WHPCD: “My Care, My Comfort” (WHPCA, 2020b; reprinted from WHPCA with permission)

As part of the October 2020 WHPCD, a new second edition of the Global Atlas of Palliative Care was released (Connor, Reference Connor2020). The Atlas is published by the WHPCA in collaboration with the World Health Organization. The Atlas paints a picture of the state of palliative care worldwide, including needs categorized by disease/condition, the status of palliative care program development by country, associated barriers and gaps to palliative care progress, resources that support and serve as examples of innovative care, and concrete ways forward. Key findings from the Atlas included updated estimates of the need for palliative care worldwide (Figure 1). Nearly 57 million patients need palliative care — including over 25 million near the end of life and almost 4 million children — with only 12% of the need being met. Over 75% of those needing care reside in low- and middle-income countries and 64% of countries have no or very limited provision of palliative care. The great majority of those who need palliative care are older and suffering from non-communicable diseases, and 83% of countries have low to non-existent access to internationally controlled essential medicines for pain and symptom relief (Connor, Reference Connor2020). The Atlas is an important advocacy tool for action to address these worldwide unmet needs.

Fig. 1. Global Atlas Stats (Connor, Reference Connor2020; reprinted from WHPCA with permission).

A virtual coming together

The concept for the US day's celebration emerged from Dr. Billy Rosa's nursing, palliative care, and global health background and his desire to honor the work of hospice and palliative care specialists. He partnered closely with nurse practitioner, Shila Pandey, and physician, Andrew Epstein, to create an agenda that would address the most pressing and internationally relevant issues affecting practice. Dr. Judy Nelson, Chief of the MSK Supportive Care Service, provided unwavering support to successfully deliver the event with integrity and quality.

The event was free of cost to promote the highest possible worldwide involvement. It is essential to note that while many academic conferences and gatherings have been restricted to online platforms to promote scholarly exchange throughout the pandemic, the US WHPCD Celebration was intentionally designed as a virtual celebration to interface with an international and culturally diverse audience. Attention was given to creating an agenda that was globally relevant and directly addressed the major societal, health, and palliative care dilemmas of the preceding year. Virtual forums for this event are expected to continue following the likely future return to in-person conferences.

At the start of the day, Dr. Rosa lit a candle over the virtual platform to acknowledge all palliative care colleagues worldwide and the patients and families that we serve. He also asked attendees to take a moment of silence to honor their own individual efforts to treat serious health-related suffering. Felicia Knaul, PhD, MA, Chair of the Lancet Commission on Global Access to Palliative Care and Pain Relief, provided the opening presentation, summarizing key findings of the Lancet Commission report (Knaul et al., Reference Knaul, Farmer and Krakauer2018). Dr. Knaul addressed international opioid disparities, including universal access to a cost-effective “Essential Package” of palliative care and pain relief interventions (e.g., immediate-release oral and injectable morphine) to alleviate serious health-related suffering at end of life.

Throughout the day, an impressive range of 23 interprofessional experts and patient/family caregivers provided nine interactive sessions addressing hospice and palliative care during COVID-19. Topics included leadership approaches; equity, inclusivity, and social justice; palliative nursing in clinical practice, policy, research, and education; spiritual and existential care; and psychosocial and ethical considerations (Table 2). A rich, compassionate, and deeply moving dialogue with an advanced cancer patient and his wife, entitled “Why Not Me?,” contributed a hopeful perspective on the benefits of hospice and palliative care in improving holistic comfort and psychosocial support in the context of anticipatory grief.

Table 2. US WHPCD conference sessions and topics addressed

Katherine Pettus, PhD, Advocacy Officer of the IAHPC, delivered closing comments on the importance of informed advocacy in local and global forums. With pragmatic guidance for all participants, Dr. Pettus reminded the audience of Sisyphus — the Greek god who cheated death on two occasions and was banished to Hades to futilely push a giant boulder uphill for all eternity. She likened the myth to modern health systems that try to cheat death only to have the boulder of patient, family, and health system needs roll downhill over and over again. Dr. Pettus (Reference Pettus2020) suggested that re-envisioning the Sisyphus myth is needed to encourage the “rock of serious health-related suffering” over the hill of sociopolitical and multi-stakeholder indifference.

Community response and future directions

A post-event unpublished evaluation generated 43 responses from a total of 265 invitations sent via e-mail. The evaluation helped us to identify participants from at least 16 countries (Bolivia, Cameroon, Canada, Germany, Ghana, India, Indonesia, Italy, Lebanon, Liberia, Mexico, Nigeria, Palestine, Saudi Arabia, South Africa, and Switzerland) and 12 states across the US. The low response rate (16%) may have been related to the planning team's inability to provide continuing education credits. However, certificates of attendance were provided for participants to demonstrate professional development activities. Disciplines represented included nurses, nurse practitioners, social workers, chaplains, physician assistants, physicians, pharmacists, psychologists, integrative medicine practitioners, students, and administrative and research personnel. Attendees hailed from inpatient 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.

The international hospice and palliative care landscape is changing on a daily basis in the face of COVID-19 and severe resource constraints worldwide. The conference planning committee believes that co-creating a safe and supportive global networking space to promote both personal reflection and interprofessional development is imperative to sustaining the field amid the evolving pandemic and widespread social injustice challenges. Both individual expression and scholarly discussion are critical to supporting palliative care teams during these unprecedented times.

The Second Annual US Celebration of WHPCD will be a two-day virtual event to be held on October 5–6, 2021. Although formal and informal feedback following the conference was overwhelmingly positive, there are improvements being made to further improve learner and user outcomes during future events. First, the conference will be broadcast live during alternating morning and evening times to maximize accessibility and convenience for a broad range of time zones. Next, we have expanded and diversified the planning committee to include representation from social work, clinical ethics, pharmacy, chaplaincy, and psychology. Third, we will better optimize the use of breakout technology and virtual platform advancements to promote interprofessional and transnational networking. Finally, we will be providing continuing education credits for attendees and recording the event to promote asynchronous access to conference sessions.

The planning team remains committed to ensuring the program remains cost-free or appropriately subsidized for colleagues living in low- and middle-income countries to eliminate financial burden and promote cross-cultural connectivity. Our event promotes the attendance, inclusion, and active participation of colleagues from under-resourced world regions who may not otherwise have the opportunity to travel or engage the global palliative care community. We expect these enhancements, as well as a longer lead time to disseminate information about the 2021 event, will significantly increase and broaden participation. Individuals or organizations with questions, recommendations, or interest in our future events should contact the authors of this paper.