2021 World Hospice and Palliative Care Day theme

Every year since 2005 the global palliative care community has chosen a theme for WHPCD that reflects an important and relevant aspect of palliative care. Previous themes have attempted to debunk palliative care myths or highlight germane facets of care, including the specific needs of seriously ill populations or a burgeoning area of palliative care. In 2021, the theme of Leaving No One Behind: Equity in Access to Palliative Care, featured groups that have historically experienced inequitable access to care and also poignant examples of overcoming inequity. Ten groups were identified that have lacked equitable access to palliative care (Table 1). The 2021 WHPCD campaign toolkit provides background information about the theme, ways that all members of society can contribute to increased access to palliative care, and the topline key messages (WHPCA, 2021b; see Table 2).

Table 1. Historically excluded groups with neglected access to palliative care

Source: Worldwide Hospice Palliative Care Alliance (2021b). Campaign Toolkit: Leave No One Behind. Available at: http://www.thewhpca.org/resources-2021/category/campaign-toolkit-leave-no-one-behind.

*Reprinted with permission from the Worldwide Hospice Palliative Care Alliance.

Table 2. Topline key messages of the 2021 World Hospice and Palliative Care Day

Source: Worldwide Hospice Palliative Care Alliance (2021b). Campaign Toolkit: Leave No One Behind. Available at: http://www.thewhpca.org/resources-2021/category/campaign-toolkit-leave-no-one-behind.

*Reprinted with permission from the Worldwide Hospice Palliative Care Alliance.

There is a disproportionate burden of serious health-related suffering for the poorest people in the world who lack access to hospice and palliative care services and the controlled essential medicines required for effective pain and symptom management (Knaul et al., Reference Knaul, Farmer and Krakauer2018). Nearly 80% of the need for palliative care is for people living in low- or middle-income countries (LMICs) (Connor, Reference Connor2020) and yet only 31% of currently available palliative care delivery is in LMICs (Connor et al., Reference Connor, Centeno and Garralda2021). This global palliative care and pain divide is the clear result of health inequities (WHPCA, 2021c). Efforts are underway to try to redress this imbalance through the creation of community-based models of palliative care to fit different cultural contexts (Elk et al., Reference Elk, Emanuel and Hauser2020; Watts et al., Reference Watts, Gazaway and Malone2020), evidence-based advocacy initiatives (Rosa et al., Reference Rosa, Pettus and De Lima2021d), and strategies to optimize the impact of the workforce to increase palliative generalist and specialist access (Rosa et al., Reference Rosa, Buck and Squires2021a, Reference Rosa, Parekh de Campos and Abedini2021c), as well as the dissemination of actionable indicators that will improve assessment of palliative care development globally (World Health Organization, 2021).

An international network, PallCHASE (Palliative care in Humanitarian Aid Situations and Emergencies), was recently formed with the purpose of working in partnership through a visible and effective network to advocate for palliative care integration in humanitarian crises or emergencies (PallCHASE, 2021). There are now millions of displaced persons due to war, climate change, disasters, and other emergencies worldwide and this number is expected to continue to grow. Displaced persons are among the most vulnerable in society, and include young children, older persons, and those with physical or mental health challenges and chronic conditions who would benefit from comprehensive palliative care (WHPCA, 2021d, 2021e, 2021f).

Homelessness is not limited to those in humanitarian emergencies — it is a worldwide problem secondary to structural inequities and lack of access to health services, especially mental health care (WHPCA, 2021g). Incarcerated individuals also lack access to palliative care, though there are a few model prison programs that are beginning to address this issue (WHPCA, 2021h). Early in the HIV/AIDS pandemic, there was much stigma and resistance by healthcare workers to deliver care, particularly to LGBTQ+ people, and this is now being repeated in many ways during the current COVID-19 pandemic (WHPCA, 2021i).

Palliative care is recognized as an integral part of the right to health and is accepted as an essential component of universal health coverage, per United Nations Sustainable Development Goal 3.8 (Achieve universal health coverage, including financial risk protection, access to quality essential healthcare services and access to safe, effective, quality and affordable essential medicines and vaccines for all) (UN, 2021). The continuum of universal health coverage runs from promotion, prevention, and treatment to rehabilitation and palliative care. Without each of these components, health care is not universally complete nor accessible in each country. The annual MSK Celebration of WHPCD is just one event around the world that regularly elevates the need for the full and equitable integration of palliative care throughout the lifespan and across the care continuum.

A virtual coming together of friends, colleagues, and palliative specialists

Similar to the inaugural celebration in 2020, the 2021 program was supported and sponsored by Judith Nelson, MD, JD, Chief of the MSK Supportive Care Service, and William Breitbart, MD, Chair of the MSK Department of Psychiatry and Behavioral Sciences. The course agenda was carefully crafted with consideration of globally relevant topics in the field, areas of growing palliative care research, and ongoing social, ethical, and cultural dilemmas. The format remained virtual to increase access to international participants and to respect the ongoing precautions and concerns related to the COVID-19 pandemic.

The event was organized through the MSK Continuing Medical Education program to offer continuing medical education credit to physicians. The cost for registration ranged from $25 to $85, depending on discipline. Complimentary registration was made available for all MSK employees and for palliative care professionals residing in LMICs, as well as palliative care students and trainees currently enrolled in a university program or completing a clinical fellowship or residency.

The conference consisted of 11 interactive sessions addressing diverse hospice and palliative care topics delivered by 37 interprofessional experts in palliative care. Topics included diversity, equity, inclusion, and cultural humility; advocacy and leadership; research and education; spiritual and existential care; complex communication needs; and social bioethical considerations (Table 3). Interdisciplinary palliative care scientists and advocates gave a total of nine rapid-fire talks, which focused on disparities in serious illness care for historically excluded populations, resilience in the face of COVID-19, bioethics, and psychedelic research. All sessions were recorded, except for the Schwartz Center Rounds session, and made available to registrants after the end of the conference, in addition to copies of presentation slides prepared by the speakers.

Table 3. 2nd Annual US Celebration of World Hospice and Palliative Care Day conference schedule and session topics

The opening keynote session was delivered by Betty Ferrell, PhD, RN, FPCN, FAAN, in which she described the international expansion of End-of-Life Nursing Education Consortium (ELNEC) to over 100 countries and territories, training more than 1.4 million ELNEC prepared nurses and other healthcare workers around the world, and translation of its curriculum 12 languages. Conference attendees learned of barriers and facilitators to global expansion of such palliative care curriculum including cultural influences, utilization of resources, stakeholder involvement, limited/lack of access to professional development, and the role of government agencies and legislation. Dr. Ferrell shared case exemplars in Kenya, Japan, India, Austria, Romania, and the Philippines showcasing the use of collaborative global partnerships and community health workers to increase international access to palliative care and highlighted lessons learned including use of local media outlets, curriculum that is inclusive to all healthcare professionals, and the importance of patience, persistence, and hope.

Palliative care leaders joined sessions focused on global palliative care priorities and hospice and palliative care policy. During a global palliative care organizational roundtable, Stephen Connor, PhD (WHPCA), Julia Downing, PhD, RGN (International Children's Palliative Care Network), Joan Marston, RN, MA (PallCHASE), and Katherine Pettus, PhD (International Association for Hospice and Palliative Care) discussed palliative care inequities and the actions each group was taking through improved professional and public education, advocacy, and research. Amy Melnick, MPA (National Coalition for Hospice and Palliative Care) gave an overview of policy action items in the US and provided guidance for palliative specialists to become engaged in the policy and advocacy process.

The 2021 program featured two deeply personal sessions showcasing the lived experiences of an oncology patient currently receiving palliative care and a bereaved caregiver who had been the recipient of supportive palliative services throughout the illness trajectory of his husband. These personal narratives provided invaluable insight on the full impact of serious health-related suffering, the benefits of hospice and palliative care for both patients and families, and professional opportunities for enhancing palliative care delivery.

The patient session featured a courageous woman and her medical oncologist, Andrew Epstein, MD, as they discussed her journey with incurable colorectal cancer. The patient expressed how she chose to balance awareness of her incurable illness and a desire to understand how long people usually live in similar situations with the need to maintain faith in God that she would have a miraculously good outcome, all the while living each day as fully as possible. The patient spoke eloquently about how she decided to not dwell on her uncertain future, including how and when she would die. She expressed gratitude for her faith and family, as well as the care she had received to date, and trust in her oncology team. As a self-identified Black woman, she addressed racism in the health system and generously “called in” the audience for a sometimes difficult conversation. Audience members engaged her and her oncologist in questions about how she was able to cope and achieve this balance in both hope with optimism and awareness with living in the moment. One audience member commented that the patient's situation reminded her of the 1922 Langston Hughes poem “Mother to Son,” particularly the words: “Life for me ain't been no crystal stair … But all the time I'se been a-climbin’ on.”

The following day, Allison Applebaum, PhD, associate attending behavioral scientist at MSK's Department of Psychiatry and Behavioral Sciences, interviewed her patient, who described his role as a caregiver to his husband who suffered from glioblastoma. The caregiver readily shared his experience from his husband's diagnosis, illness trajectory — including undergoing brain surgery and disease-targeted treatments, and the eventual functional losses, transition to hospice care, dying, death, and bereavement. He thoughtfully outlined challenges of the caregiver role including the physical aspects of care (e.g., lifting, bathing, toileting), coordinating care, maintaining hope, and preparing for death. This caregiver identified access to a robust interdisciplinary team, early palliative care, participation in formal and informal psychosocial support (e.g., Meaning-Centered Psychotherapy, support groups, bereavement counseling) as resources that allowed for adaptive coping and open communication with his spouse and care team. Their experience as a same-sex married couple experiencing a terminal illness, the role of health literacy, the impact of the COVID-19 pandemic, benefits of home hospice services, and opportunities for improvement were discussed.

On day two of the conference, an interdisciplinary palliative care team from the University of Colorado Hospital provided rare insight into their personal and professional experiences during COVID-19. Using photographs, song, poetry, and narratives, the team — an advanced practice nurse, music therapist, physician, and social worker — shared the barriers and facilitators of ensuring dignified care throughout the pandemic. Their individual stories of trauma, cumulative loss, racism, and unkindness demonstrated authenticity and courage, as well as the power of interprofessional and interdisciplinary collaboration, inspiring the audience to acknowledge the difficulties imposed by COVID-19 on the quality of care delivery and to use positive team relationships to support their work.

Conference participants were then offered the opportunity to choose from two break-out sessions: one on spiritual care needs and the other on global fellowship programs. An interfaith chaplain panel representing spiritual care specialists from Buddhist, Christian, Jewish, and Muslim faiths offered experiences and approaches to caring for patients with diverse spiritual care needs. Physician colleagues from Harvard University, Tulane University, and University of California San Francisco shared a program overview and outcomes of their collaborative global hospice and palliative care fellowship in various sites in India and Africa.

Lukas Radbruch, MD, Chair of Palliative Medicine at the University of Bonn and Board Chair of the International Association for Hospice and Palliative Care, delivered the closing keynote presentation on disparities in access to palliative care across the world. Dr. Radbruch reviewed exemplars from locations such as Thiruvananthapuram, India and Soweto, South Africa where palliative care services are available but struggle with privacy issues (e.g., no walls within the clinical unit), limited access to clean water, and insufficient opioid supply. He explained how palliative care differs in resource-limited countries, where basic physiological needs (water, shelter, food, income) are a priority and volunteers are essential to delivering the care; compared to resource-rich countries where autonomy, dignity, sense of coherence is valued, and care is delivered by specialty-trained palliative care providers. Dr. Radbruch emphasized access to medically indicated opioids as a human rights issue to alleviate serious health-related suffering and recommended a balanced approach to opioid policy in alignment with international recommendations and global partnerships to improve the delivery of global palliative care.

Onward

The post-conference evaluations generated 115 responses from a total of 181 invitations sent by email. The higher response rate (64%) compared to the year prior was most likely related to the availability of continuing medical education credits and administrative support from the MSK CME program. Disciplines represented included nurses, nurse practitioners, social workers, physicians, physician assistants, chaplains, pharmacists, physical therapists, 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. Most (86%) identified as a clinician who manages or cares for patients, with 19% managing at least 20 patients weekly. Most participants rated the overall format of the program (70%) and length of the program (64%) as excellent. Almost all (98%) responded they would attend this meeting again virtually and 74% rated the overall virtual experience as excellent. All participants responded they were likely to recommend this course to a colleague.

Participants committed to change in areas of patient and interprofessional communication, patient education, teamwork roles and responsibilities, treatment, quality improvement, diagnosis and screening, safety, and other categories. Some specific examples from comments included: “I will help to continue to educate patients and their families prior to the end of life, because palliative care should be a continuum,” “Hold debriefings after deaths on the floor,” “Continue to work with my colleagues creating DEI [diversity, inclusion, and equity] content that will help people disrupt microaggressions,” and “Implement a QI [quality improvement] project on goals of care for our non-palliative care providers.” Almost all (99%) respondents reported the content was relevant to practice with comments ranging from “Extraordinary sharing of current, real-world care and advocacy,” “Precise and practical examples,” “A lot was learned from attending this seminar,” “Gave me a better understanding of palliative care across the world,” and “Hearing about volunteers who help provide treatment to those in need restores my faith in humanity.”