Although humanitarian crises around the world show no signs of abating, and a number of factors, including climate change and recalcitrant conflicts, seem poised to continue driving and even increasing the frequency of crises in coming years, the scale and capability of international aid efforts has nonetheless grown with time. Humanitarian crises, defined by the World Health Organization (WHO) as “large-scale events that affect populations or societies causing a variety of difficult and distressing consequences that may include massive loss of life, disruption of livelihoods, breakdown of society, forced displacement, and other severe political, economic, social, psychological and spiritual effects,”1 may take many forms, including natural disasters such as hurricanes and earthquakes, disease outbreaks (e.g., Ebola), and international refugee crises sparked by war, violence, or famine. Given this variety and complexity, it has become evident that international responses to crises must, to some extent, be tailored to the specific circumstances.
On a positive note, the scale and capability of international aid efforts have grown with time, and there is reason for hope with the ongoing improvement and increasingly effective responses from the international community. The number of humanitarian aid organizations continues to grow, and with time and experience operations continue to become more streamlined. Technology, especially the rise of social media, has allowed for rapid dissemination of information and real-time reporting, leading to an increased global awareness and rapid responses. Aid organizations also continue to make efforts at integrating responses with existing government and informal health structures and providers.
Another important development in healthcare in general offers an opportunity to improve services delivered during crises: the field of palliative care has grown from a small group of individuals interested in how to best care for the seriously ill and dying to a separate medical subspecialty with its own training and certification programs, focused on providing the best care possible to individuals and family members facing severe and life-limiting illness, regardless of how imminent death may be.
Recently, there has been increasing recognition of the importance of integrating palliative care into humanitarian aid. This is reflected in a growing number of journal articles and position papers on this topic, most notably the WHO publication Integrating Palliative Care and Symptom Relief into the Response to Humanitarian Emergencies and Crises: A WHO Guide, published in October 2018. This increasing recognition is in part a reflection of the growth of palliative care as a medical subspecialty; it also reflects the increasing understanding that the goal of humanitarian aid is not simply to save lives, but also to alleviate suffering. This latter point cannot be overstated: when the primary focus of aid efforts remains simply and solely the saving of lives (which, of course, is a worthy goal), those efforts risk failing in the equally important, and morally and ethically compelling, goal of addressing suffering.
Additionally, there may well be a “trickle-up” effect—that is, by integrating principles of palliative care into the fundamental approach to all patients, starting from the moment of triage, overall care improves across the board, regardless of outcome. This includes better overall symptom management, better communication (between clinicians and patients and families as well as among clinicians themselves), and improved staff resilience. Simply put, integrating principles of palliative care into the care of all patients means better overall patient care and an improved healthcare system.
Currently, there are not enough formally trained and certified palliative care providers to staff every humanitarian aid mission in the world, nor does that solution make the most sense. Even in hospitals with robust palliative care teams, most emphasize educating other clinicians in primary palliative care skills as a way of amplifying treatment impact. In a similar fashion, we propose that while providers with advanced palliative care training would make a welcome addition to any humanitarian aid effort, the goal of widespread integration of palliative care into such efforts is more likely to succeed through the training of aid workers in principles of primary palliative care that they can themselves apply, regardless of whether clinicians with more advanced training are present. This manual is intended to be a first step toward providing clinicians without formal palliative care training the guidance and education required for addressing basic palliative care needs while responding to humanitarian crises.
The manual is divided into three sections. The first section deals with conceptual issues around integrating palliative care into humanitarian crises—what that might look like and in what ways integration must be tailored to the specific crisis. The second section deals with specific symptoms or symptom clusters—for example, how to manage dyspnea in someone with severe injury or progressive disease, or how to manage symptoms in an actively dying patient. Finally, the third section addresses psychosocial issues such as grief and self-care.
The manual is intended to be above all else practical. Each chapter is designed to be lean and focused, putting practical information at the clinician’s fingertips. It is not intended to act as a foundational textbook on any of the topics it covers. In addition, while we hope that this manual may prove useful to local clinicians trying to provide palliative care in the context of humanitarian crises, we must acknowledge that this manual was written by clinicians from higher economic–status countries. It is worth recognizing at the outset that while this approach has its advantages, it also leads to some shortcomings. These shortcomings may be most pronounced in the psychosocial chapters (Chapters 16–17), where discussions of how to provide culturally sensitive and appropriate care for every possible setting is simply beyond the scope of this manual. Clearly, issues like providing support around grieving and bereavement are heavily culture dependent. As noted in these later chapters, we encourage incorporating local providers for these purposes wherever possible. But for the purposes of this manual, we focus on how providers in the midst of challenging and often overwhelming situations can best begin incorporating principles of palliative care. Given the fraught conditions in which these providers work, we have embedded the theme of trauma-informed care throughout the book.
There remains much work to be done in this field. We hope to some day see better research on the topics covered here, more comprehensive textbooks, and more formalized training programs to optimize the integration of palliative care into humanitarian relief efforts. In the meanwhile, we hope that this manual provides some useful, practical guidance for those undertaking this incredibly important work.