key: cord-0750200-7e5nh3ic authors: Glass, Marcia; Rana, Smriti; Coghlan, Rachel; Lerner, Zachary I.; Harrison, James D.; Stoltenberg, Mark; Namukwaya, Elizabeth; Humphreys, Jessi title: Global Palliative Care Education in the Time of COVID-19 date: 2020-07-24 journal: J Pain Symptom Manage DOI: 10.1016/j.jpainsymman.2020.07.018 sha: e2a078ad9e4479eba7261efcb73c54b30366b7da doc_id: 750200 cord_uid: 7e5nh3ic The COVID-19 pandemic has highlighted the need for healthcare providers skilled in rapid, flexible decision-making, effective and anticipatory leadership, and in dealing with trauma and moral distress. Palliative care (PC) workers have been an essential part of the COVID-19 response in advising on goals of care, symptom management and difficult decision-making, and in supporting distressed healthcare workers, patients and families. We describe GPEC (Global Palliative Education Collaborative), a training partnership between Harvard, UCSF, and Tulane medical schools in the US; and two international PC programs in Uganda and India. GPEC offers US-based PC fellows participation in an international elective to learn about resource-limited PC provision, gain perspective on global challenges to caring for patients at the end of life, and cultivate resiliency. International PC colleagues have much to teach about practicing compassionate PC amidst resource constraints and humanitarian crisis. We also describe a novel educational project that our GPEC faculty and fellows are participating in – the Resilience Inspiration Storytelling Empathy (RISE) Project - and discuss positive outcomes of the project. The COVID-19 pandemic has made stark the interconnectedness of peoples and nations. Healthcare providers responding to the pandemic within their own contexts have been quick to share challenges, experiences and innovations with the global health community. Even before COVID-19, there was a movement towards building a global health workforce and aligning educational initiatives with this goal, as evidenced by the creation of the 2016 WHO Global Health Workforce Network. 1 As a result, many American residencies and fellowships had begun incorporating global health into their educational programs through away rotations, dedicated lecture series/curricula, and specialized research offerings. Because of the global nature of COVID-19, we expect demand for education on global health to rise sharply following the pandemic, as trainees identify this as a core training need. Within the field of palliative care (PC), global health is an emerging focus of interest. The WHO has identified PC as an ethical mandate for healthcare systems worldwide, and studies have highlighted the high burden of health-related suffering globally, even prior to COVID-19. 2, 3 In this active COVID-19 pandemic, the field of PC has been called upon to advise health systems on acute symptom management, urgent goals of care, ethics surrounding the allocation of limited resources, supporting distressed and overwhelmed healthcare workers, and creative and technological innovations related to communicating with isolated patients and families. With expertise in addressing physical, psychosocial and spiritual needs during times of "normal" human crisis, PC teams have much to contribute in helping other healthcare workers improve human connectedness, and in supporting patients and families to deal with stress and fear. These PC skills in highest demand are core to those practiced by global PC practitioners. As humanitarian crises increase in intensity and duration, the need for trained global PC practitioners who understand how to operate in settings of resource scarcity and during humanitarian crises is clear and pressing. 4 Recognizing the need for trained global PC practitioners, our schools designed the Global Palliative Educational Consortium (GPEC). Until 2017, there were no dedicated global health training programs within PC fellowships. Although many institutions employ individual providers practicing global palliative medicine in silos, we recognized the need to build a mentorship community for trainees and design robust clinical experiences in global palliative medicine. Thus, we formed the GPEC partnership between the University of California San Francisco (UCSF), Harvard, and Tulane universities to train and mentor PC fellows in global health. We formed reciprocal partnerships with two international PC programs: Department of Medicine, Makerere University School of Medicine PC Unit in Kampala, Uganda, and Pallium India, a national charity based in Kerala, India. These centers have established leading PC programs outside high-income countries, with experts in global PC and experience in responding to acute and protracted humanitarian crises: for example, Pallium India's response to the devastating 2018 Kerala floods 5 and Makerere's PC support for South Sudanese refugees residing in the Adjumani camps. 6 Both programs had a long-standing practice of inviting healthcare educators to provide teaching, and expressed interest in a formalized program that would meet their needs. They are intricately involved in decisions around fellow oversight and evaluation, and educational content by and for fellows. They codesign fellow projects to ensure they impact patients and healthcare providers in-country, and align with their programmatic values. The core GPEC curriculum, which spans one academic year, consists of pre-elective training prior to departure, a one-month clinical elective in either Uganda or India, a global health and resiliency curriculum throughout the year, and continuous senior and near-peer mentorship. Prior to each elective, fellows participate in pre-deployment remote meetings with US-based mentors to review both organizational planning (e.g. housing, travel, safety, and visas) and clinical planning (e.g. setting clinical expectations, identifying lecture topics and projects). On site, fellows meet regularly with in-country mentors. In early shared design of the fellowship, Pallium India highlighted a critical need to culturally orient the fellows, ensuring awareness of local history, political trends and economic challenges that impact patient care. They identified a trusted University of Iowa faculty member, frequently on site at Pallium India, to introduce fellows to South Indian culture and to the values and priorities of Pallium India's work. This faculty member also performs hospice and palliative medicine fellowship entrustable professional activities (EPAs) with fellows to set expectations and perform evaluations. Ugandan-based faculty staff identified a similar need for cultural competency: they introduce fellows to Kampala life and to the structure and logistics of Mulago Hospital; clarify goals for the clinical rotation; and structure the fellows' time to be compatible with local needs and priorities. They specify fellow-provided lecture topics based on team interest, and send fellows out to additional sites for continued outreach, prioritizing patient needs in multiple settings. Fellows communicate with PC team members in English, which is the academic language in both sites, and use PC team members for translation for much patient interaction. The cornerstone of the GPEC fellowship is the one-month clinical elective. One month was identified by our international partners as the minimum time needed to develop an understanding of key cultural differences and the specific contexts of the local health system to be able to participate meaningfully in clinical care and relationship building with the PC teams. In Uganda, fellows spend two weeks working in Kampala with the Makerere Palliative Care Unit, an interdisciplinary team of physicians, a clinical officer (equivalent to physician assistants and nurse practitioners), nurses, a social worker, and volunteers. Fellows are based at an academic center with trainees and research projects, and see patients in two inpatient hospitals and one cancer center. Fellows participate in rounds and provide teaching and journal club on topics identified by the teams as priorities. Requested topics have included methadone, chronic non-cancer pain, lymphedema, end-of-life care, and critically evaluating research manuscripts. Fellows also spend 1-2 days per week with the non-governmental organization Hospice Africa Uganda, providing home-based hospice care to patients in and around Kampala. One week is spent in Nagalama performing home-based PC visits in a rural site with a team of local palliative providers. . In India, fellows are based at Pallium India where they work with an inpatient PC team consisting of multiple physicians, nurses, social workers, and a psychologist. They also participate in home-based PC visits with teams consisting of one physician, several home nurses, and periodically a PC psychiatrist. During their elective, they provide requested lectures for PC certification courses for multi-specialty practitioners seeking PC certification throughout India. They also offer lectures to the local team of doctors, nurses, and social workers on an array of topics including grief and resilience, advanced pain management with methadone and ketamine, and complex pain syndromes. To receive feedback from our international partners, and continuously improve, we are currently interviewing focus groups of international site leaders to optimize remote/telemedicine collaboration in the coming year. Fellows participate in Zoom-based regular virtual meetings throughout the year. Didactic topics include: global palliative care 101, establishing global partnerships, access to essential medications, opioid legalization and access policies, resiliency and wellness in global medicine, and the role of palliative care during pandemics. Didactics are delivered both by US-based faculty as well as practitioners from the local sites. In addition, there is a core resiliency curriculum. This intervention is undertaken by a psychotherapy-trained chaplain with experience working with healthcare providers experiencing trauma. These meetings include an assessment of the fellow's current resiliency tools and identification of gaps, as well as help processing experiences. In year two of the program, we initiated a written narrative medicine exercise to assist in debriefing, and encouraged dissemination. To date, one fellow from year two published a poem in the Pallium India newsletter following the clinical elective in India and a second prepared a piece for submission. Recognizing the importance of resilience support, the Pallium India team, with several invited members of GPEC, designed a resilience program for healthcare providers globally who are affected by the COVID-19 crisis. The program, called RISE (Resilience, Inspiration, Storytelling and Empathy), uses the art of storytelling to create a supportive online community willing to share and listen to experiences of healthcare workers in this challenging time. Members of our US team were invited to collaborate on these sessions as part of a group of 16 facilitators from different parts of the world, including India, South Africa and the UK. Members come from varied backgrounds including pediatric palliative care, mental health, theatre and performance arts, and critical care. These storytelling sessions occur once a week over zoom with the same core group of listeners, an assigned facilitator, an assigned storyteller, and a therapist who can offer a trauma-informed response. There is a somatic/experiential activity before each story, a group debrief after each story, and an individual debriefing for the storyteller after the zoom session. While RISE does not position itself as an interventional program, it does have clearly defined and stated objectives (see Table 1 ), terms of engagement, and documentation frameworks designed to safeguard its participants and enhance resilience. All the RISE sessions are guided by principles of traumainformed response, as described in The Oxford Manual for Palliative Care in Humanitarian Crises. 4 RISE participants completed an anonymous survey regarding their perceptions of the storytelling sessions. Twenty-two participants completed the survey (92% response rate), and responses were overwhelmingly positive (see Table 2 ). The majority of respondents 'strongly agreed' or 'agreed' that participation in RISE had enhanced their meaning-making within a shared awareness of a trauma-informed response (n=19, 86%), and that it had promoted understanding (n=19, 86%), empathy (n=20, 91%) and the capacity to listen in the context of an humanitarian crisis (n=21, 95%). Seventeen (77%) survey respondents reported that they have used and shared the lessons they have learned in the RISE project in their clinical practice. With our international partners, we developed a robust PC training program which brings significant and reciprocal benefits to all parties. The partnership has led to further shared opportunities including mutually beneficial academic collaboration. For example, our US-based GPEC institutions supported Pallium India, at their request, to write pediatric palliative-care pain management guidelines and develop a bedside point-of-care ultrasound training program for paracenteses. When some of our US-based team authored the Oxford Manual for Palliative Care in Humanitarian Crises 4 , our international partners collaborated on several chapters. Practitioners with experience working in varied resource-limited and humanitarian settings are in high demand as a result of the COVID-19 pandemic. Through the experience of living and working within a setting with less healthcare resources, our fellows develop new and adaptable skills relevant to dealing with PC in humanitarian crises such as pandemics. Our global partners have much to teach the fellows about agility and resiliency. Pallium India, in collaboration with PalliCovid Kerala (an informal group of physicians), released an e-book on holistic palliative care guidelines for COVID-19, aimed at all healthcare workers as they respond to the pandemic, but especially those operating in situations of resource scarcity. 7 Experience practicing in a resource-limited setting trains one's mind to be agile, and brainstorm creative solutions. It is challenging to conceive of other ways to practice medicine if one has always practiced in a stable environment with relatively infinite supplies. Practicing within a context where ordering a particular medication or imaging study might impact the availability of that resource for another patients introduces providers to the challenges of practicing within resource-limited contexts. We teach our fellows that the vast majority of the world exists in a constant state of resource limitation, humanitarian triage and sometimes morally challenging decision-making. Global PC, and in particular that practiced in humanitarian crises, also calls for rapid decisionmaking and action. The process of quickly incorporating information, weighing outcomes, and making decisions without the input of large committees and careful calculation are unique skills that must be learned and practiced. In contrast, the default response in much of our healthcare system is to proceed cautiously, with an abundance of bureaucracy. These impulses must be evaluated and sometimes even fought during times of crisis, and those capable of moving quickly, thoughtfully, and compassionately amidst resource constraints and sometimes high stress should be empowered. In addition, practitioners trained in global PC have the potential to predict possible outcomes and issues before they arise, enabling systems to plan. Global PC practitioners are well-versed in the scarcity of medications, supplies, personnel and morale that can occur in crises. Ensuring these individuals have leadership positions in healthcare administration empowers systems to plan ahead at the onset of a crisis. Healthcare providers working in humanitarian crises already face a high risk of trauma exposure and moral distress, which can lead to burnout and physical and mental health issues. 8, 9 Those dealing with COVID-19 in many countries have suddenly found themselves in distressing situations making decisions where demand for healthcare has outstripped supply. The COVID-19 pandemic is revealing an increased need for individuals trained in resiliency techniques and in recognizing the impacts of trauma. Resiliency should be a core curricular component of any global health training program. It is a specific focus of GPEC, through our organizing debriefings, resilience-themed lectures, individual counseling sessions, narrative medicine projects, and the RISE educational initiative. Finally, our fellows come to understand that the scope of PC is also wider in most low-or middle-income countries because disease-specific treatment does not reach patients adequately or early enough. While following the definition of palliative care as outlined by the WHO, 10 in the context of countries like India and Uganda, the term "life-threatening" is defined broadly, and does not only apply to mortality risk. "Life-threatening" diseases like paraplegia threaten life by limiting it to within four walls. In high-income countries, there is a parallel care system that takes care of people with such conditions. In many low-and middle-income settings, such conditions are brought into the fold of PC and require innovation and adaptation. With the rising need for global PC skills, both abroad and at home owing to the current pandemic, the field of PC must respond by building our future workforce, in reciprocal partnership with international programs. As a specialty, we are poised to provide expertise to our colleagues and health systems in how to prepare for these events, as well as how to provide high quality and creative care when they do occur. We have much to learn from our international colleagues, many of whom are already well versed in practicing compassionate palliative care amidst resource constraints and during humanitarian emergencies. It is critical to acknowledge that the skills needed to act efficiently and compassionately are unique and must be taught. Moreover, it is vitally important to protect providers and patients from long-term trauma and treat those who do experience serious harm from these experiences. We must prepare now by training the next group of PC providers to support our nation and world through the pandemics still to come. Our model of reciprocal learning with international PC experts offers one way to achieve this. Counter isolation and provide safety, intimacy, connection and community among anyone associated with the delivery of healthcare in the context of a humanitarian crisis and beyond. 2. Work with imagination through the art of storytelling to promote empathy and understanding. 3. Explore our capacity to listen generously, and to witness and explore the potential of listening as a form of healing. 4 . Enhance resilience and meaning-making within a shared awareness of trauma-informed response. 5. Promote self-guided reflection on emotional and lived experiences. 6. Share lessons learned during the development of and participation in RISE with the wider world. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report A Field Manual for Palliative Care in Humanitarian Crises Kerala Floods: When the Rich and the Poor Suffered Together Widening Healthcare Access in Host and Humanitarian Settings Palliative Care Guidelines for COVID19 Trauma-related mental health problems among national humanitarian staff: a systematic review of the literature The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma