On 3 and 4 October 2022, the Memorial Sloan Kettering (MSK) Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences cosponsored the Third Annual US Celebration of World Hospice and Palliative Care Day (WHPCD). Building on the promising outcomes of the first 2 conferences in 2020 and 2021 (Rosa et al. Reference Rosa, Pandey and Epstein2022b, Reference Rosa, Pandey and Epstein2021), the third annual conference again used a live virtual format and was condensed over 2 half days – one in the morning and the other in the afternoon, to increase global access and participation. The 2022 conference program promoted topics relevant to the Worldwide Hospice Palliative Care Alliance (Worldwide Hospice Palliative Care Alliance (WHPCA) 2022a) theme – Healing Hearts and Communities (Figure 1). We aim to provide a brief report of the 2022 event to reflect on lessons learned and paths forward as we continue to capture the momentum, maximize the cumulative, ongoing impact of our successive conferences, and prepare for the next annual event that will take place on 3–4 October 2023.
Fig. 1. Theme and goal: World Hospice and Palliative Care Day 2022.
This year’s conference attracted the highest registrant count to date – a total of 458 individuals from at least 17 different countries, including Armenia, Australia, Bolivia, Canada, Colombia, Germany, Ghana, Kenya, India, Indonesia, Italy, Jamaica, Lebanon, Nigeria, Philippines, United Kingdom, and 15 states across the US (Figure 2). The conference course directors and planning committee comprised an interdisciplinary team representing nursing (W.E.R. and S.P.), medicine (A.S.E. and A.V.D.), spiritual care (L.J.A.), social work and bioethics (L.B.), and pharmacy (L.A.K.). Internationally recognized experts in research and academia, policy and advocacy, clinical practice, organizational leadership, education and professional development, and faith communities were invited to celebrate, support, and honor the endeavors of hospice and palliative care workers worldwide. The intentional inclusion of patient and family caregiver participants, as well as a virtual Schwartz Rounds (The Schwartz Center for Compassionate Healthcare 2023), emphasized the power of humanity, dignity, and compassion for both care recipients and health professionals.
Fig. 2. Geographic location of conference registrants.
2022 World Hospice and Palliative Care Day theme
The 2022 theme for WHPCD was Healing Hearts and Communities (Figure 1). This theme emerged from the universal experience of grief, the need to heal that is uniting humanity worldwide, and the importance of community-based bereavement support (Figure 3). The more than 6 million deaths worldwide during the first 2 years of the COVID-19 pandemic has resulted in tremendous strain on health-care systems and unprecedented grief and suffering for health workers and caregivers, including the extreme pain of loss for loved ones who could not see dying patients in hospitals and intensive care units due to visitor restrictions (Lynch et al. Reference Lynch, Green and Saltz2022; McPeake et al. Reference McPeake, Kentish-Barnes and Banse2023). In addition, numerous armed conflicts, wars, and human-made and natural disasters have occurred around the globe (Rosa et al. Reference Rosa, Grant and Knaul2022a), amplifying unexpected and often traumatic loss for millions of families and caregivers within a broader context of social isolation, displacement and forced migration, and property destruction. See Table 1 for the 2022 WHPCD campaign key messages.
Hospice programs – and some palliative care programs – are the only health-care delivery services that consistently deliver bereavement follow-up to families and typically offer support and services for 1 year following the death. Many hospice programs serve not just the families using hospice, but those in the community that are bereaved as well. The WHPCA has called on all governments to develop, fund, and implement national strategies to deliver increased support for bereaved adults and children, particularly for those with complicated grief, such as prolonged grief disorder (Table 2). The pandemic’s disproportionate impact on the world’s poorest and most vulnerable populations has increased the grief burden in countries with the least access to palliative care and other critical social care services.
Fig. 3. Subthemes: World Hospice and Palliative Care Day 2022.
Table 1. Campaign key messages: World Hospice and Palliative Care Day 2022
Source: Worldwide Hospice Palliative Care Alliance (WHPCA) (2022b). Campaign toolkit: healing hearts and communities. Available at: https://thewhpca.org/world-hospice-and-palliative-care-day/resources-2022/category/campaign-toolkit.
Reprinted with permission from the Worldwide Hospice Palliative Care Alliance.
Table 2. Key ask: World Hospice and Palliative Care Day 2022
Source: Worldwide Hospice Palliative Care Alliance (WHPCA) (2022b). Campaign toolkit: healing hearts and communities. Available at: https://thewhpca.org/world-hospice-and-palliative-care-day/resources-2022/category/campaign-toolkit.
Reprinted with permission from the Worldwide Hospice Palliative Care Alliance.
A virtual coming together unifying collaborators, countries, and contexts
As in prior years, the third Annual Event 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 curated with consideration of globally relevant topics in the field, areas of growing palliative care research, and ongoing social, ethical, and cultural dilemmas, including the 2022 WHPCA theme. The format remained virtual to increase access to international participants and amplify the voices and priorities of colleagues working in low- and middle-income countries (LMICs).
The event was organized through the MSK Continuing Medical Education program to offer continuing education credits. This year we expanded continuing education credits to include nursing and psychology credits in addition to the previously available credits for physicians and advanced practice providers. The cost for registration ranged from $50 to $135, depending on discipline. Complimentary registration was made available for all MSK employees and for palliative care professionals residing in LMICs, palliative care students, and trainees currently enrolled in a university program or completing a clinical fellowship or residency, and individual experiencing financial strain.
The conference consisted of 13 interactive sessions addressing diverse hospice and palliative care topics delivered by 52 interprofessional experts in palliative care. Topics included person-centered palliative care; cancer pain management and substance use disorder; diversity, equity, inclusion, and cultural humility; advocacy and leadership; resiliency for palliative care workers; research and education; spiritual and existential care; complex communication needs; bereavement and caregiving; and social bioethical considerations (Table 3). Interdisciplinary palliative care scientists and advocates gave 5 rapid-fire talks, which focused on person and family-centered hospice and palliative care, bereavement, care of LGBTQ + patients, dignity, and caregiver-centered interventions. All sessions were recorded, except for the Schwartz Center Rounds session (for confidentiality purposes), and made available to registrants at the end of the conference, in addition to copies of presentation slides prepared by the speakers.
Table 3. Third Annual US Celebration of World Hospice and Palliative Care Day conference schedule and session topics
The opening keynote session was delivered by Harvey Max Chochinov, OC, MD, PhD, FRCPC, FRSC, in which he reviewed his experience in psychiatry and palliative care research. He began by reviewing the role of dignity in the care of seriously ill patients, specifically how clinicians’ empathic response to patients has a profound experience on their lived experience. He explained the importance of dignity conserving care as “the essence of medicine” and listed approaches clinicians can take to affirm personhood. Dr. Chochinov summarized key publications on dignity conserving care, including the development of the Patient Dignity Inventory as a novel method to measure dignity-related distress in palliative care and dignity therapy as a psychotherapeutic intervention for patients near their end of life (Chochinov et al. Reference Chochinov, Kristjanson and Breitbart2011, Reference Chochinov, McClement and Hack2012; Schoppee et al. Reference Schoppee, Scarton and Bluck2022). Conference attendees learned of the development and application of the patient dignity question: “What should I know about you as a person to help me take the best care of you that I can?” Dr. Chochinov proposed a shift to a new standard for person-centered care shifting from the Golden Rule of “do onto others as you would have them do unto you” toward the Platinum Rule “do unto patients as they would want done unto themselves” (Chochinov Reference Chochinov2022). He offers the Platinum Rule as a method to raise the standard of person-centered care, enhance goal concordant care, confront personal biases, and consistently prioritize the patient perspective.
The subsequent session showcased an update on global serious health-related suffering (SHS) from The Global Palliative Care and Pain Relief Research Hub, a group of international and interdisciplinary palliative care specialists and researchers whose aim is to advance the recommendations of the Lancet Commission on Global Access to Palliative Care and Pain Relief (Knaul et al. Reference Knaul, Farmer and Krakauer2018). First, Felicia Marie Knaul, PhD, shared a broad overview of the imperative to alleviate the burden of SHS from serious illnesses and at the end of life. She highlighted the need for universal access to an affordable Essential Package of palliative care, which consists of medications, small inexpensive equipment, and necessary human resources, as a method to alleviate the burden of SHS. She was followed by Professor Julia Downing, RGN, BN, MMedSCi, PhD, who focused on the need to increase access to palliative care for children to address the SHS experienced by the global pediatric population (Coombes et al. Reference Coombes, Braybrook and Roach2022; Lohman et al. Reference Lohman, Cleary and Connor2022). She reviewed research methods to prevent underestimation of children’s palliative care need. Data approximations of children’s SHS from 1990 to 2019 and implications for practice were clearly outlined. Recommendations for future research, efforts to advance advocacy, and strategies for palliative specialist service development summarized her talk. She was followed by Renzo Calderon Anyosa, MD, MSc, PhD(c), who presented on SHS in Latin America. He reviewed data from 19 Latin American countries on SHS by year and illness, further characterizing SHS by country income group and the availability of opioids in distributed opioid morphine-equivalents. He emphasized the need for policy change and health systems investments toward strengthening existing palliative care delivery and the need to develop PC infrastructure where none exists (De Lima and Pastrana Reference De Lima and Pastrana2016; Paiva et al. Reference Paiva, Bonilla-Sierra and Tripodoro2023; Pastrana and De Lima Reference Pastrana and De Lima2022). Pedro Pérez-Cruz, MD, MPH, concluded this session, describing a recent analysis of Chile’s palliative care access gaps in the context of current policies and resources (Pérez-Cruz et al. Reference Pérez-Cruz, Undurraga and Arreola-Ornelas2023). Dr. Cruz and his group estimated the current provision of palliative care in Chile compared to the magnitude of SHS among decedents and non-decedents with both cancer and non-cancer conditions, while also estimating the cost of the palliative care Essential Package proposed by the Lancet Commission (Knaul et al. Reference Knaul, Farmer and Krakauer2018). He concluded with recommendations to increase access to palliative care through clinician training and capacity building, facilitate access to controlled essential palliative medicines (e.g., opioids), and advance needs-based public policy in Chile.
This year, our team offered 2 breakout sessions throughout the conference. On day one, participants were offered the opportunity to choose from 2 expert-led sessions, one addressing burn out among the palliative care workforce and another on cancer pain management in the presence of co-morbid opioid use disorder. An expert panel of psychology, social work, spiritual care, and nursing shared insightful presentations on the prevalence of trauma, moral injury, empathic strain, and disconnectedness in palliative care providers and offered approaches to be effective stewards of existing resources with the use of meaning-centered psychotherapy, mindful self-awareness, and additional well-established techniques. In the session on cancer pain management, speakers addressed the impact of restrictive drug policies and opioid stigma on patients with substance use disorder and consensus recommendations on the management approaches for opioid use disorder in the setting of advanced cancer (Jones et al. Reference Jones, Khodyakov and Arnold2022).
The 2022 program featured deeply personal sessions showcasing the stories of an oncology patient (who is also a palliative care clinical pharmacist) and a bereaved caregiver. These personal narratives provided invaluable insight on suffering, grief of losing a loved one, the benefits of hospice and palliative care for both patients and families, and professional opportunities for enhancing palliative care delivery. The patient session featured Andrew Epstein, MD, FAAHPM, both a medical oncologist and formally trained hospice and palliative medicine specialist, interviewing patient and palliative specialist, Ebtesam “Sammi” Ahmed, PharmD, MS, who shared how her experience as a palliative care pharmacist informed her approach to decision-making while navigating rigorous chemotherapy cycles and surgeries and discussing her goals and core values with loved ones. She openly shared how this experience helped her learn to advocate for herself so she could receive palliative care and pharmacologic management for distressing symptoms. While initially it was challenging to accept the identity of a person with cancer, Sammi reflected on the significant impact living with cancer has had on her identity as a palliative care clinician. She shared challenges of continuing to work in hospice and palliative care while facing her own mortality as someone with serious illness. She discussed the importance of creating a space to continue her clinical work while also caring for herself.
Allison Applebaum, PhD, associate attending behavioral scientist in MSK’s Department of Psychiatry and Behavioral Sciences, interviewed her patient of over 5 years, Claire Mauksch, on day 2. Claire shared her experience caring for her husband, Brian, who was diagnosed with colon cancer several weeks before their wedding. His disease progressed over the next few years, including complications of a malignant bowel obstruction, until his eventual death at home with hospice services while Claire was 34 weeks pregnant with their child, Sam. Dr. Applebaum and Claire discussed the challenges of being a caregiver, how they navigated isolation and fear of the future as a young and newly married couple, and the decision to have a child amid the uncertainty of Brian’s illness. Both Claire and Brian received psychosocial care, which profoundly helped their coping, particularly to develop the ability to sit with uncertainty and negative emotions. Claire reflected on missed opportunities in Brian’s care to talk about values, quality of life, prognosis, and end-of-life care planning. She quickly learned the importance of needing to advocate for loved ones while navigating the health-care system, which is now a fierce commitment of hers in the care of Sam. She described how her caregiving journey carried over into her grieving process. She emphasized the importance of having enough support and continues to attend a support group for partner loss. She also finds support in social media, especially to find resources as a young widow.
On day 2 of the conference, an interdisciplinary palliative care team from the Seattle Children’s Hospital provided a thoughtful and emotional discussion of a pediatric patient case for the special Visiting Virtual Schwartz Rounds session. The panel recounted the journey of a young man impressively optimistic and determined throughout the trajectory of the care for his pediatric cancer, from which he ultimately died. One panelist offered how the case challenged her and enriched her experience as a relatively new attending. Other panelists talked about the vulnerability and humility that comes with caring for young adult patients.
The conference also featured a session on hospice and palliative care advocacy led by Brynn Bowman, BA, Chief Executive Officer of the Center to Advance Palliative Care (CAPC), a panel presentation with authors of The Lancet Commission on the Value of Death, and a rapid-fire talk session with 5 speakers on topics relating to diversity, equity, and inclusion in the delivery of person- and family-centered care. On day one, Ms. Bowman reviewed the implications of federal and state-level health policies on palliative care delivery in the US. She showcased progress on legislative policy to address disparities in the care of Black patients with serious illness and their families (CAPC n.d.) and gave an update on the status of the Palliative Care and Hospice Education and Training Act (Palliative Care and Hospice Education and Training Act (PCHETA) 2020). She emphasized the importance of hospice and palliative care workers’ involvement in health-care policy as a method of patient advocacy. On day 2, commissioners from The Lancet Commission on the Value of Death presented a summary of the report, which proposes greater community involvement alongside health and social care services and increased bereavement support (Sallnow et al. Reference Sallnow, Smith and Ahmedzai2022). Libby Sallnow, MBBS, PhD, gave an overview of the report, including a global perspective on how and where people are dying and the disparities related to over and under-treatment at the end of life. She shared the commission’s new vision for dying and grieving called “a realistic utopia” and presented 5 underlying principles to carry this out. Fellow commissioners, Raj Kumar Manu, MD, FRCP, and Sam Guglani, FRCR, contextualized the findings from the report, discussing overt medicalization of death and dying in the modern world. They shared scenarios where modern technology and therapeutics conflict with relationship building and engaging personhood along with recommendations for health-care systems to shift goals and priorities toward alleviation of suffering rather than avoidance of mortality (Sallnow et al. Reference Sallnow, Smith and Ahmedzai2022).
Day 2 also featured a session of 5 rapid-fire talks from diverse palliative care specialists and researchers focused on the theme of person- and family-centered care. Kailey E. Roberts, PhD, spoke on the development of bereavement-conscious palliative care with the use of bereavement risk screening (Roberts et al. Reference Roberts, Lichtenthal and Ferrell2021). Natalie McAndrew, PhD, RN, ACNS-BC, CCRN-K, discussed meaning-focused interventions for family caregivers to promote emotional coping and live with uncertainty (Applebaum et al. Reference Applebaum, Sannes and Mitchell2023). Conference attendees learned about Project RESPECT: a study led by Gary L. Stein, JD, MSW, on LGBTQ + experiences with health-care providers and findings that support LGBTQ + patients and partners to address discriminatory care (Stein et al. Reference Stein, Berkman and O’Mahony2020). Rachel Hadler, MD, followed with her talk on the results of a study evaluating responses to the Patient Dignity Question (Hadler et al. Reference Hadler, Goldshore and Rosa2022). Dr. Hadler provided recommendations for future research and was followed by Tamryn F. Gray, PhD, RN, MPH, whose presentation focused on the need for experts in the field to lead and advance palliative care research with an anti-racist approach and provided strategies to promote diversity, equity, inclusion, and justice through palliative care research (Sanders et al. Reference Sanders, Gray and Sihlongonyane2022).
Kimberly Angelia Curseen, MD, director of outpatient supportive care at Emory Palliative Care Center, delivered the closing keynote in honor of Dr. Richard Payne, former Chief of Palliative Care Services at MSK on the application of principles of diversity, equity, and inclusion in palliative care. Dr. Curseen reviewed the recent societal events that have focused global attention on eradicating systemic racism. She emphasized the importance of understanding medical and personal history to enhance empathy, create honest dialogue, diffuse fears, and build trust. Attendees learned of current anti-racist research on palliative care topics including evidence around disparities in end-of-life care for Black Americans, hospice utilization among patients of color, and ethnic differences in place of death in older hospice enrollees (Marcewicz et al. Reference Marcewicz, Kunihiro and Curseen2022). Dr. Curseen provided recommendations for health policy, educational tools, and hospice advocacy including Medicaid expansion programs for in-home caregiving. She called on palliative care to serve as a model that can promote social justice principles while actively meeting the needs of our patients and families.
Onward
Participants will have on-demand access to all recorded presentations following the conference to support self-paced learning, ongoing reflection, and practice integration and development. We had a 43% post-conference evaluation response rate (n = 132 responses from n = 308 e-mail invitations). 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 (81%) identified as a clinician who manages or cares for patients, with 16% managing at least 20 patients weekly. Most respondents rated the overall format of the program and length of the program as good or excellent (97% and 100%, respectively). Almost all (98%) responded that they would attend this meeting again virtually, and 99% rated the overall virtual experience as excellent. All respondents (100%) thought the activity incorporated principles of equity, diversity, and inclusion to the extent possible, and 100% reported the conference supported interdisciplinary care practice. All respondents (100%) shared that 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] make a concentrated effort to learn about patients [from] different culture[s] and their relationship with [the] medical community to provide better care,” “Promote the Platinum Rule to improve patient–provider communication and advance care planning,” “Take more time to listen before interpreting what I think I hear [patients] tell me,” and “Introduce the option and benefit of palliative care [earlier in the disease journey] to help improve their quality of life.” All respondents (100%) reported the content was relevant to practice, with comments ranging from “The issues discussed were something that I encounter every day in practice,” “I was able to listen to experiences from other colleagues,” “Discussions of dignity and medical aid in dying [MAiD],” “Lived experiences were displayed,” and, “The concepts of caring for not only a patient but a human with specific needs and characteristics is something I will use in my daily practice with patients.”
Conclusion
Post-conference evaluations highlight the unique contribution of our MSK conference to the hospice and palliative care field with an emphasis on global and multicultural inclusion, interdisciplinary and collaborative practice, social justice, and both art and science (Rosa et al. Reference Rosa, Pandey and Epstein2022b, Reference Rosa, Pandey and Epstein2021). The Fourth Annual US Celebration of WHPCD will be a 2-day virtual event to be held on 3–4 October 2023. Next year, we will provide access to continuing social work credits in addition to nursing and physician continuing education credits. Given the previous successes of our conferences over these initial 3 years, we will continue to use a live virtual platform over 2 half days, alternating morning and evening times to allow for an international audience. We maintain commitments to ensuring diversity in our planning committee and among invited faculty, as well as equitable program access through continued complimentary registration to those who require it. Through ongoing enhancements in promotion, planning, and dissemination of the program, we expect increased enthusiasm and participation for the 2023 event. In a rapidly changing world and health system, we believe our Annual WHPCD conference will serve as a safe and inclusive space for community building and wisdom sharing for many years to come.
Acknowledgments
The authors thank all conference speakers who generously donated their time and expertise to create a successful event: Zipporah Ali, MD, MPH, MPC; Allison Applebaum, PhD; Edgar Barens, MFA; Brynn Bowman, MPA; Hailey Bulls, PhD; Rev. Carla Cheatham, MA, MDiv, PhD, TRT; Harvey Max Chochinov, OC, MD, PhD; Maria Cordoba-Nunez, MD, MSc; Kimberly Angelia Curseen, MD; Michele DiTomas, MD, MS; Julia Downing, RGN, BN, MMedSci, PhD; Susan Ehling, MN, ARNP; Tamryn Gray, PhD, RN, MPH; Sam Guglani, BSc, MBBS, MRCP, MA; Rachel Hadler, MD; Susan Hedlund, LCSW, OSW-C; Katie Fitzgerald Jones, PhD, APN, CARN-AP; Felicia Marie Knaul, PhD; Vickie Leff, MSW, LCSW, APHSW-C; Wendy Lichtenthal, PhD; Raj Kumar Mani, MD; Natalie McAndrew, PhD, RN, ACNS-BC; Jessica Merlin, MD, PhD; Ladybird Morgan, RN, MSW; Marvin Mutch; Tania Pastrana, MD, PD; Pedro Pérez-Cruz, MD, MPH; Kailey Roberts, PhD; Cynda Hylton Rushton, PhD, RN; Katerina Rusinova, MD, PhD; Zachary Sager, MD; Libby Sallnow, MBBS, PhD; Gary Stein, JD, MSW; Mallory Taylor, MD, MS; Gretchen VonHeeder-Phillips, LICSW. Special thanks to our patient, Ebtesam Ahmed, and family caregiver, Claire Mauksch, who inspired all attendees with their courage, vulnerability, and authenticity. Gratitude to the entire MSK Continuing Medical Education team that designed and managed the event.
Conflicts of interest
None declared.
