We are writing this letter in response to the recent review of A Field Manual for Palliative Care in Humanitarian Crises (Oxford University Press) in IAHPC Book Reviews (2020; Vol. 21, No. 4, April). As co-editors, we feel that the review reflects misconceptions on the part of the reviewer regarding both the purpose of the manual, as well as the potential role of modern academic palliative care in humanitarian crises.
To begin, regarding the “brevity” of some (we would even say all) of the chapters, we would point out that this was quite intentional. The manual was designed (as explicitly discussed in the introduction) first and foremost as a functional tool for clinicians in the field, a quick reference to be kept handy in a pocket or backpack. This is not intended to serve as a foundational textbook for the growing field of palliative care in humanitarian crises. Though such a book would, in our opinion, be very valuable, our goal in producing this manual was to put something immediately useable in the hands of clinicians in the field, as well as possibly serving as a guide for training clinicians planning to deploy to such crises, or for local providers on the ground.
The reviewer also seems to have a rather narrow view of what defines palliative care, seeming to conflate it with hospice care. We hold to a broader definition of palliative care being a holistic, interdisciplinary approach to providing support for individuals and families suffering from potentially life-limiting conditions. The reviewer seems to conceive of a narrower scope of practice in the context of humanitarian crises. In our broader view, which we believe is more consistent with the spectrum of humanitarian crises seen around the world, care should also include addressing physical, psychological, and spiritual elements of suffering that result not just from direct injury or illness in the context of a crisis, but also from the exacerbation of preexisting conditions and the social upheaval that so often results from humanitarian crises. Care should involve not just the alleviation of symptoms, but also be an exploration of goals and values along with psychosocial support to the greatest extent possible. Indeed, it is the enormous challenge of how to incorporate these aspects of care into the management of humanitarian crises that spurred the creation of this manual. Not incidentally, a number of international aid organizations have been working toward integrating palliative care into their training and management; the editors and a number of contributors have been actively involved in these efforts. Notably, we have seen a surge of demand for this manual in the face of the current pandemic (Oxford University Press has kindly made it available for free online) highlighting that there is a real need here.
Finally, we must address what we feel is an unfair slight toward the many contributors to this manual. The reviewer comments that most reviewers seem to be from countries that are “a comfortable distance from places renowned for humanitarian disasters” (a comment not without irony in the current global pandemic) and that perhaps “humanitarian aid people” created this manual in an attempt at “trying to look better” (though it is not clear why aid workers would need or care to burnish their image). The fact is that the contributors are drawn from a mix of people involved in the worlds of humanitarian aid, palliative care, and, in many cases, the nexus of the two. If anything, this book would be more accurately described as originating in the palliative care community. Importantly, we feel it vital to stress that virtually all contributors, though perhaps based in North America, Europe, and Australia, have significant experience in work with humanitarian crises, having taken on great personal discomfort and even risk to do so. We are grateful that so many were willing to dedicate the time to help create this manual in an effort at helping make sure that the standard of care in humanitarian crises, regardless of location, remains consistent with the best standards of care anywhere in the world.
Elisha Waldman, MD FAAHPM
Chief, Division of Palliative Care
Ann & Robert H. Lurie Children's Hospital of Chicago
Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine
Marcia Glass, MD
Program Director, Hospice and Palliative Medicine Fellowship
Tulane Medical Center, New Orleans
Associate Professor of Internal Medicine, Tulane University School of Medicine