The “New-Old” Dimensions of Caring in Humanitarian Response: The Opportunity for Public Health Palliative Care to Advance the Humanitarian-Development Nexus,Decoloniality,and Localization Thought

Abstract

How can palliative care framings advance humanitarian discourse? The imperative for palliative care in humanitarian settings is increasingly urgent. Recent efforts by health and humanitarian organizations demonstrate increasing attention to the issue. Yet palliative care is still not adequately formally considered or enacted by humanitarian agencies in rhetoric, policy, research, or practice. Even where it is considered in humanitarian action, palliative care is often assumed to be a novel intervention, rather than a caring practice that has existed from time immemorial, including in humanitarian situations. The generation of ideas in this paper has followed a dynamic, iterative, and reflexive process through engagement with key literature, critical thinking, conversations with colleagues across both sectors, primary data, and debate amongst the authors. The paper argues that the current dominant frame of a new, specialized, professionalized, and medicalized palliative care in the humanitarian sector would perpetuate existing challenges. It contends that viewing both fields through a “new-old” lens, where historical and traditional caring practices intertwine with progressive discourse for a more just and appropriate public health response, can further humanitarianism. It posits that the humanitarian-development nexus, decoloniality, and localization thought can benefit from palliative care practice through critical interaction with a broad range of literature.

Keywords

public health palliative care localization decoloniality humanitarian-development nexus

What do we already know about this topic?

The study of palliative care in humanitarian crises is in its infancy and uptake of palliative care by humanitarian agencies has been limited, with current discourse focused on Western-biased and driven priority setting, knowledge transfers, accountability processes, and financing mechanisms, rather than being grounded in history, community, and culture.

How does this research contribute to the field?

This paper seeks to strengthen dialog and practice on humanitarian palliative care by arguing that viewing both the humanitarian and palliative care fields through a “new-old” lens, where traditional caring practices and progressive discourse for a more just and appropriate response intertwine, can advance the humanitarian project.

What are your research’s implications toward theory, practice, or policy?

An approach to palliative care in humanitarian settings which privileges history, tradition, community, culture, and context could provide an important opportunity to steer a path toward progressive humanitarian thought and practice.

Introduction

Palliative care seeks to ease suffering in life-limiting or life-threatening illness and in dying, and in bereavement after death. It is estimated that by 2060, 48 million people (47% of all deaths globally) will die with serious health-related suffering; meaning those dying could have benefited from palliative care.¹ The greatest increases in illness suffering will occur in low-resource settings, driven largely by illnesses requiring continuing care such as non-communicable diseases (NCDs) and dementia.¹

Humanitarian crises are often marked by high mortality and health-related suffering.² The 2023 Global Humanitarian Overview (GHO) highlighted concerns for increasing deaths rooted in climate change including extreme heat and air pollution, in addition to deaths caused by starvation, disasters, and conflict.³ Furthermore, humanitarian situations are increasingly protracted and complex, with the need to attend to both acute and chronic illnesses. The GHO estimates that 339 million people globally need humanitarian assistance.³ The number of people living through crises and the increasing complexity of health threats suggest a significant palliative care need.

The imperative for palliative care in humanitarian crises is being increasingly recognized by health and humanitarian organizations. Recent efforts include the World Health Organization’s (WHO) 2018 guide Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises,⁴ and the Sphere Handbook’s 2018 edition including a new minimum standard on palliative care.⁵ These represent significant advancements in bringing together discourses on palliative care and humanitarian response, but there is still work to be done. Palliative care is not adequately formally considered or enacted by humanitarian agencies in rhetoric, policy, research, or practice.^2,6
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Humanitarian health often creates a “false dichotomy” between saving lives and alleviating the suffering of those affected by life-limiting illness or those who are dying.¹⁰ Even where it is considered in humanitarian action, palliative care is assumed to be a resource-intensive, specialist medical luxury for those healthcare systems that can afford it. It is introduced through its deficits, dilemmas, and challenges in crisis, and as another (and seemingly new) priority which humanitarian agencies cannot afford attention amidst competing needs. Yet, caring for people with palliative needs is universal and has existed from time immemorial, including in humanitarian situations.

There are commonalities in the traditions, ethos, and ethics of humanitarianism and palliative care. Palliative care is at once a novel contemplation for most humanitarian agencies, and a radical reminder of the essence of humanitarian response, which is to alleviate suffering wherever it may be found.⁶ At the same time, challenges in caring for those with life-limiting illness or those who are dying in humanitarian crises parallel all the typical dilemmas and critiques that plague the modern humanitarian sector: curative, emergency-focused, bureaucratic, Westernized, top-down and internationally-biased financing, limited accountability processes, and priority setting by donors and agencies that fail to meet the needs of local communities.^11,12

The contemporaneous era is one of disruption and transformation in both global palliative care efforts and in humanitarian discourse, policy, and response. The authors, along with others in the field, emphasize that palliative care must be seen as an integral component of the continuum of health services alongside health promotion, diagnosis, treatment, and rehabilitation, which demands the dedicated attention of humanitarian agencies.^8,13
-15 This paper proposes that any efforts toward the integration of new formal palliative care policies, workforce, and interventions in humanitarian response must be accompanied by a recognition of historical and contemporary traditions, ethos, and ethics of caring.

The authors argue that framing palliative care as a “new-old” public health imperative, embedded in traditional social caring practices and environment, and yet progressive in contemporary humanitarian contemplation, may significantly increase the uptake by humanitarian agencies. We suggest that an historical lens of caring in illness and dying in humanitarian settings provides a critical frame and opportunity through which to advance 3 core concepts prevalent in mainstream modern humanitarian discourse: the humanitarian-development nexus (HDN), decoloniality, and localization. The HDN calls for increased collaboration between organizations working in humanitarian and development assistance.^16,17 The call to decolonize humanitarian health aims to combat structural racism and power imbalances and place agency in the hands of those needing assistance.² Localization seeks to formalize the role played by local responders and organizations in crises and change the way (predominantly Western and top-down) aid and funding are delivered.¹² At their heart, these progressive humanitarian concepts argue for a return to traditions of valuing the essence of humanitarianism as grounded in humanity and focused on relieving the suffering of anyone impacted by crisis. This argument has clear practical implications - applying its concepts to both how and why palliative care is relevant in humanitarian settings has the potential for both material and social benefits. There exists a critical opportunity for the 2 fields of humanitarianism and palliative care, both progressive in rhetoric but traditional in ethos, to bolster each other’s aims.

The following section explains the background to, and genesis of, this paper. The next section titled ‘Parallels in “new-old” dimensions of humanitarian response and palliative care: Historical roots, modern debate, and progressive discourse’ introduces the new-old lens in the realms of humanitarian response and palliative care. It presents 3 core concepts in humanitarian aid with which the authors engage—the HDN, decoloniality, and localization—as well as an exploration of how in both the palliative care and humanitarian fields, contemporary debates are reconnecting with historical roots. The next section, ‘The opportunity for public health palliative care to advance progressive humanitarian thought,’ builds on the literature by overlaying ideas from palliative care work with each of the 3 humanitarian concepts. In this section, the authors argue that both the palliative care and humanitarian realms are involved in a dialog between traditional ethos and progressive advancements. A penultimate section, ‘The “new-old” dimensions of caring in humanitarian response: Drawing on history to recover humanitarian ethos for the future,’ discusses the implications of bringing palliative care thought into humanitarian concepts. Finally, a conclusion synthesizes the argument.

Background to This Paper

The generation of ideas in this paper has involved a systematic, iterative, and reflexive process. All authors bring a unique position and perspective to this topic, with backgrounds spanning humanitarian and interdisciplinary health, palliative care, and social care academia and practice. The first author’s (RC) doctorate research on palliative care in humanitarian settings, and the many diverse conversations with humanitarian and palliative care actors her project stimulated, were the catalyst for this paper.

The line of argument presented is based firstly on RC’s critical engagement with historical, current and emerging literature in palliative care, humanitarian response, and the intersection of the 2 fields over several years. It is further drawn from primary data collection and analysis (58 interviews and associated observations during fieldwork) conducted by RC (and supervised by MP and NZC) for a PhD on palliative care for the seriously ill and dying in Gaza, prior to the current war which broke out in October 2023.¹⁸ In this study, RC engaged with the experiences, perspectives, and lives of participants in Gaza through an in-depth exploration of suffering, illness, dying, and caring in serious illness and injury in the context of protracted occupation and war.

The juxtaposition of ideas, historical and current sources across humanitarianism and palliative care, and lessons from the field, suggests that both fields:

Consider the care of the wounded, seriously ill, and dying during war as milestone moments in their history and in the shaping of their ethical imperatives.

Bring shared foundations for understanding humanity through our common human emotions of kindness and compassion, and their associated, often religious, imperatives around caring and loving in response to suffering, weakness, or abandonment.

Are, in their present modern forms, criticized for being increasingly specialized, professionalized, neo-colonial, and lacking in genuine understanding of the diversity of contexts, cultures, and, communities.

Are responding to such critique through developing parallel discourse and frameworks that are at once new and progressive and grounded in old tradition, history, and “back to basics” approaches. In humanitarian discourse, progressive concepts of the HDN, decoloniality, and localization parallel broadened attention to holistic care at any stage of all life-limiting and life-threatening illness, political, environmental, social and cultural context, and community diversity and strengths, within a movement toward public health palliative care. At the heart of these concepts is a common desire to refocus efforts toward humanity, dignity and responding to the suffering of all people.

Rarely engage with each other despite shared ethical roots, pathways to modernization, and common efforts toward “back to basics.”

Finally, the authorship team explored and debated these key concepts through emails and conversations, leading to the particular question this paper poses, novel within humanitarian palliative care literature – how can palliative care framings advance humanitarian discourse?

Parallels in “New-Old” Dimensions of Humanitarian Response and Palliative Care: Historical Roots, Modern Debate, and Progressive Discourse

Humanitarian Response

While there are different historical and cultural traditions of humanitarianism, the mainstream (Western) formal humanitarian system owes much credit to Swiss businessman Henry Dunant. During the violent Battle of Solferino in Italy in 1859, Dunant tried to help relieve the suffering of wounded and dying soldiers; and proposed that voluntary relief societies be established to assure more humane care of the wounded during warfare, governed by international principles.¹⁹ Dunant’s seminal document, A Memory of Solferino, depicts harrowing suffering and loneliness in war, alongside moments of tenderness; “suggesting compassionate care manifest in accompanying and soothing the dying is the keystone of humanitarian action” (p. 9).⁶ Dunant’s accounts of war bring historical relevance to the relief of suffering and compassionate caring in dying by first responders and local people in humanitarian crisis, no matter how scarce the resources or basic the care.

Dunant’s proposal led to the establishment of the International Committee of the Red Cross in 1863 and the development of a principle-based system of humanitarian ethics. The overall goal of humanitarian action is expressed as the principle of humanity—the purpose of the action to protect life and health, uphold dignity, and alleviate suffering wherever it may be found—and impartiality—its universal and non-discriminatory application. Together with the principles of neutrality (not favoring any side in political, racial, religious, or ideological disputes), and of independence (the autonomy of humanitarian action from political, economic or other objectives), these comprise the Fundamental Principles of the Red Cross and Red Crescent Society agreed in 1965.²⁰ These principles have since permeated the practice of international humanitarian organizations—adopted by the wider humanitarian system in 1994 in the Code of Conduct for the International Red Cross and Red Crescent Movement and NGOs in Disaster Relief—and now recognized in international law.²¹ Care for the dying, the relief of suffering, and recognition of our common humanity are in the DNA of humanitarian response.

While these principles remain the guiding system of contemporary humanitarian practice, the directness of ministering to wounded and dying soldiers on the battlefield is rarely so commonplace or simple.²² Over time, the formal humanitarian sector has become increasingly preoccupied with professionalizing and specializing, and gradually more bureaucratized and top-down. As the number, duration and complexity of humanitarian crises increases, criticisms abound that the sector is falling short and no longer fit for purpose. As one of the co-authors of this paper titled a previous article, “The humanitarian system is not just broke, but broken”.²³ Medical humanitarianism has struggled to meet health needs, and expectations on the breadth of humanitarian health interventions across acute and protracted crises continue to expand.²⁴ The 2015 State of the Humanitarian System report contended that though it is a “cliché for reports of this kind to declare the humanitarian system ‘in crisis’ or ‘at a crossroads’, something new seems to have dawned in the collective understanding of the paucity of the enterprise” (p. 10).²⁵

Building over recent decades, the global humanitarian sector has become mired in “new-old” debate. The concepts of HDN, decoloniality, and localization signify major areas of debate in contemporary and mainstream humanitarianism in response to this collective reckoning. These 3 concepts demonstrate how humanitarian contemplation is “new-old”: progressive in terminology, yet embedded in tradition and historical roots of caring for individuals and communities experiencing suffering.

The intertwining of humanitarian situations and long-term structural issues, exemplified by conflict and increasingly underpinned by the impacts of climate change, has resulted in increased attention to the HDN. The HDN is a contemporary framing for understanding the tension between emergency response and structural change, and the proposal of frameworks seeking to bridge this divide has been a long-running endeavor.²⁶ Its conceptual predecessors include the idea of “linking relief, rehabilitation, and development” (LRRD) and relief-development. LRRD, the immediate precursor to the HDN which saw aid as moving along a continuum, was also critiqued for not being applicable to complex political emergencies.²⁷ An earlier concept of relief-development has its roots in famines in Africa in the early 1980s.²⁸ Stemming from Amartya Sen’s work that argued against famine being the simple result of lack of food availability, relief-development proposed to consider how food aid can link to the root causes of famine such as income collapse.²⁹ Before this time though, humanitarian response focused more on overall aims than on units of time, with the demarcation between “short-term” humanitarianism and “long-term” development gradually hardening with the increasing institutionalization and professionalization of aid.²⁶

The contemporary nexus, codified by the United Nation’s “New Way of Working” in the mid-2010s, calls for a more collaborative and holistic approach that considers phases of preparedness, response, recovery, and development.^16,17,30 Protracted conflicts and the rise in NCDs now mean the usual demarcation between humanitarian and development efforts is inappropriate.²⁴ There are long-standing frictions between traditional emergency-focused (humanitarian) and long-term (development) goals: for example, responding to emergency needs versus lifting people out of poverty, or providing acute healthcare versus supporting chronic diseases. Communities may “remain ‘on the edge’ for decades, creating a permanent zone of uncertain emergency” (p. 9)²¹; a state of oxymorons of the “verge of crisis” and the “long durée” of humanitarian action (pp. 179-228).³¹

Decoloniality in the context of modern humanitarianism “challenges Eurocentric analysis, foregrounding the experiences and knowledges of the intended targets of humanitarian aid . . . [posing] questions not so much about the political will, operational implementation and technical capability of humanitarians as about the perpetuation of colonial power relations in seemingly benevolent activities” (p. 66).³² The history of humanitarianism has its roots not only in the colonial connotations of the Western formal humanitarian system, but also in revolutionary origins of humanitarian response outside “the West” and connected with historical human rights movements and decoloniality itself, once envisioned by radical thinkers such as Frantz Fanon.³³ While decolonization activities long pre-date this current moment, decoloniality has been urged on in recent times by collective movements such as Black Lives Matter, and amid a growing global sea-change toward global equity and reconciliation. Decolonizing humanitarian health means contesting structural racism and power imbalances and placing agency in the hands of those whose lives are being impacted by crisis.²

Localization lacks a single agreed definition but refers generally to the need for the mainstream international system to cede power to local and national actors for better humanitarian outcomes. It calls for the formal international system to recognize the role played by local responders in crises and change the way (predominantly Western) aid and funding are delivered, recognizing that they are often the first to respond to crises and the last to leave; and that the people most affected by crises have the least involvement in the humanitarian system and aid is not always aligned with what people actually need.¹² Some commitment to the local has long been attempted in formal, Eurocentric international development spheres, implicit in efforts emerging in the early 1990s which encouraged the “participation,” “empowerment,” and “agency” of local beneficiaries of development aid, playing out, for example, in programs dedicated to economic empowerment including the specific participation of women living in poverty in economic activities.³⁴ The Paris Declaration on Aid Effectiveness, adopted in 2005 and reaffirmed in 2008 in the Accra Agenda for Action, promoted national ownership over aid³⁵; and the New Deal for Engagement in Fragile States in 2011 emphasized the need for nationally-led and owned approaches.³⁶ The term “localization” itself though became a catchword and mainstream issue on the international humanitarian agenda at the World Humanitarian Summit in 2016, following years of critique of the humanitarian system as top-down, centralized and bureaucratic, ignoring or sidelining local actors, and perpetuating neoliberal power imbalances, despite previous aid commitments and efforts.^23,37 Localization and decolonization are sometimes linked or conflated, and critical views argue that localization risks simply continuing to replicate existing power structures and that it fails to address widespread issues of structural racism.^38
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Together, these 3 “new-old” humanitarian concepts point to a need to understand humanitarian health response beyond emergencies, and beyond international (and predominantly Western), colonial assumptions of power. Fundamentally, this discourse argues for a return to traditions of valuing the ethics of humanitarianism and its principle of humanity—the belief in the equal value of human life and actions to relieve anyone suffering, no matter how scarce the resources—and a departure from the current form of humanitarian aid as the formalized, professionalized, top-down, and oft-times perceived white savior system led by Western donors and organizations.^11,41

Palliative Care

Palliative care also holds central principles to prevent and relieve suffering and uphold dignity,⁴² borne out of recognition of our common humanity with others. The origins of formal palliative care in the European tradition extend to medieval times when passing travelers who fell ill could find refuge in monastery hospices and be attended to by clergy until death.⁴³ At this time, guides to “ars moriendi,” the “art of dying,” were widespread.⁴⁴ Informally, palliative care happened in the home. Deaths were part of family and community: they mainly occurred from infectious diseases or accidents, infant deaths were high, and the home was where families supported the dying, death happened, bodies were prepared, funerals took place and families and communities comforted the bereaved.⁴⁵

Modern palliative care was first recognized as a specialist discipline in late 1980s, taking up its home within Western healthcare systems, and is now a field of medical and professional specialization in a growing number of countries.^14,46 At its highest level of specialization, palliative care is delivered by specialist doctors and nurses, and increasingly specialist multidisciplinary teams of, for example, physiotherapists, occupational therapists, social workers, speech therapists, psychologists, music therapists, pastoral care workers, bereavement professionals, and even pet therapists. Countries with the most specialized services rank highest in global palliative care rankings, leading to interpretations that palliative care scarcely exists unless designated such a speciality.^15,47

With the emergence of palliative care as a medical specialization, medicine in the Western world has simultaneously become engrossed with conquering disease and extending life at any cost. For much of the biomedical world, death—and palliative care—are the failure of medicine to cure.⁴⁸ Palliative care has had to, and continues to have to, fight for its medical legitimacy in a cure-obsessed world.

Paradoxically, the global palliative care sector now is grappling with a discipline critiqued for its excessive focus on specialist, and increasingly professionalized, medical interventions in life-limiting illness and at the end of life. Philosopher Ivan Illich argued that “dying was yet another aspect of human life which had been colonized and taken over by medical busybodies” (p. 281).⁴⁹ The process of dying has shifted from a historically religious, spiritual and relational process within homes and communities, to a medically and professionally managed one within healthcare systems and institutions.⁵⁰ There are concerns that the current system replaces purportedly “soft” (and undervalued) human dimensions of caring with the technical quest for the control of physical pain and symptoms through “hard” biomedical interventions.^51,52 In response, we are seeing new alliances motivated to (re)create communities comfortable with talking about death, and supporting the sick or dying through community models of caring.^53,54

There are also murmurs of discontent in the modern palliative care sector of a Western construct whose knowledge and interventions tend to flow unidirectionally from Western to non-Western (mainly low-income) countries, privileging a universality of this medical, professional and technocratic approach and devaluing traditional rituals in illness, caring and dying. Zaman et al argue for a “subaltern and post-colonial studies perspective” to framing palliative care which accepts plurality over homogeneity of palliative care models and interventions (p. 72).⁵⁰ Others have called for the decolonizing of palliative care.⁵⁵

All this has led to suggestions that palliative care is having “an existential crisis”,⁵⁶ “a Winter of discontent”,⁵⁷ or is “at a crossroads”.⁵⁸ Today, palliative care is presented as both a medical and professional speciality, and a social movement come almost full revolution and borne out of the desire of communities to (re)embrace death and traditional caring practices.⁵⁹ The discipline of public health palliative care has emerged which seeks to reimagine (or reclaim) palliative care as a public health concern: prioritizing equity of access for whole populations; counteracting the predominance of palliative care as a medical and professional specialization; attending to the ways culture and political, social and environmental context influence meanings of suffering and caring; and giving appropriate weight to the role of humanistic, emotional, social and spiritual concerns, relationships and community networks in the care of those who are ill or dying.^59,60

Paralleling progressive humanitarian thought, the concept of public health palliative care is a discourse which argues for a return to traditions of valuing social context, culture, and community in caring in illness and dying—and a departure from the current dominant frame as the specialized, professionalized, medicalized, and individualized system of care led by medical practitioners and organizations.⁵⁹ This evolving palliative care contemplation is also “new-old”: on the one hand, a progressive shift away from a Western biomedical model toward a social one; and on the other, embedded in traditional rituals and family and community caring practices, and come full circle back to historical roots.

The Opportunity for Public Health Palliative Care to Advance Progressive Humanitarian Thought

There are common ends in the historical ethos, values, and ethics of humanitarian response and palliative care. There are also equivalences in the siloed, specialized, top-down, and colonial nature in which these systems have evolved to provide assistance and transfer knowledge. There is an important correlation between the emerging (“new-old”) approach of public health palliative care to work with communities to develop care systems and models rather than attempting to build it for them^60,61; and current (“new-old”) discourse concerning harmonizing, localizing, and decolonizing humanitarian response to span acute and chronic needs, and stay grounded in and led by those affected populations.¹¹ Both the palliative care and humanitarian fields face a critical opportunity to reclaim traditional ethos and ethics as they seek to advance progressive discourse concerning the HDN, localization, and decoloniality.

Advancing the Humanitarian-Development Nexus

Palliative care is relevant wherever there is health-related suffering, death, and bereavement. It spans acute or emergency (life-threatening) illness or injury, and chronic (life-limiting) disease. It is pertinent across both health and social care sectors, and different settings of care. And consequently, it requires coordination between levels and types of funding, and financial investment beyond the short-term. Palliative care crosses the usual demarcation of single disease-focused medical interventions, emergency humanitarian and long-term development siloes, and existing bureaucracies and funding mechanisms. It provides a useful frame through which to operationalize HDN, going beyond thought into practice.

Important in HDN concepts is a recognition that existing siloes between emergency and long-term development assistance mean that humanitarian response often contradicts the needs of people with chronic or life-limiting illness. Modern palliative care promotes a holistic approach—stemming from age-old caring traditions—relevant for any person, of any age, affected by any life-limiting or life-threatening illness or injury, from the time of diagnosis through to death and into bereavement.⁶² Palliative care is based on need rather than time-specification, and includes, but is broader than the last hours or days of life.⁶² Humanitarian scenarios applicable to palliative care span protracted crises, sudden onset mass casualty events or disasters, and epidemics with high mortality and limited therapeutic options.⁹ The multifaceted and changing nature of complex humanitarian emergencies should also be emphasized: for example, where communities endure unrelenting suffering imposed by protracted conflict compounded by intermittent waves of acute, and often deadly, emergency (eg, Gaza); and crises in which previously middle- or high-income regions with greater rates of chronic disease are affected (eg, Syria).

The HDN also requires adoption of public health approaches beyond individualized, medicalized, and single disease-focused interventions. The holistic nature of public health palliative care and its intent to address medical and social suffering across physical, social, emotional, and spiritual domains, means it also holds relevance for those working in both health and social care sectors and across settings of care, including hospitals, institutions such as hospices or aged care facilities, primary healthcare settings, community, and the home.^59,63 It is not limited to biomedical care, nor where such care is delivered only within institutions. This broad applicability means that palliative care should not be viewed as a radically new priority for humanitarian settings to be implemented as yet another siloed concept.⁶ Rather, it is salient to many existing humanitarian priorities, including, but not limited to, maternal, newborn and child health, infectious disease outbreaks, NCDs, aging, social protection, mental health and psychosocial care, and injury or illness rehabilitation. This is reflected in both WHO’s and Sphere’s recent efforts on palliative care, with the former centering on integration of palliative care and the latter emphasizing the need for palliative care, mental health, and NCD standards to speak to one another.^4,5

Finally, HDN thought demands that humanitarian and development financing and activities are harmonized, coordinated, and flexible.³⁰ The holistic nature of palliative care provides an opportunity to test coordinated funding mechanisms among international, national and community-level health and social care actors, and flexible, multi-year funding.

Despite its wide-ranging applicability, an emergency mentality of saving lives continues to be given primacy over supporting people who are chronically ill, old, or dying in current humanitarian response.⁹ Grief and bereavement care are not a focus of existing humanitarian mental health approaches.⁶⁴ Short-term funding cycles for emergency and project-based activities typical of humanitarian financing contribute to restrictions on funding dedicated to chronic illnesses requiring long-term follow-up.⁶⁵ Humanitarian organizations need to ensure that those with palliative needs do not fall through the chasms of siloed thinking. Public health palliative care drives integrative and holistic care across and beyond sectoral or time-bound siloes and offers a crucial lens through which to advance progressive HDN thought.

Advancing Decoloniality in Humanitarian Response

Public health palliative care promotes an approach to caring which attends to cultural and contextual norms, traditions and rituals in health-related suffering, death and bereavement.⁵⁹ It recognizes plural pathways in caring across traditions, cultures, and contexts, and seeks to counter the unidirectional and oft-times top-down transfer of palliative care knowledge, models, and interventions from predominantly Western countries to “other” settings. Palliative care, if viewed through such a public health lens, provides opportunity to advance the humanitarian decolonizing agenda. Conversely, if viewed through a dominant biomedical frame of care, palliative care risks perpetuating historical and current colonial divisions in humanitarian response.

In mainstream discourse and practice, there are equivalences in the ways in which humanitarian assistance and dominant palliative care have evolved to attend to the transfer of (mostly Western) knowledge and “expertise” (albeit well-meaning toward efforts to be “culturally sensitive”), with roots in colonialism, charity, and White saviourism. In Canadian Indigenous caring, for example,

“Palliative care is what our communities have always done. First Nations hold an enormous amount of traditional, community-based knowledge and expertise in negotiating the personal, familial, and community experiences of caring for community members who are sick. However, through colonisation, health systems have been imposed on First Nation people and typically do not support Indigenous care”.⁶⁶

Normative framing of a “culturally sensitive” or “culturally adapted” palliative care brings an implicit assumption that dominant palliative care practices, derived from Western specialization and biomedicine, are the way. Anything which deviates from these dominant norms of care is subject to “othering” and reductionist ways of understanding what culturally sensitive palliative care involves.⁶⁷

“Culture” is often taken as a catchphrase for non-white, non-Christian practices and preferences for care in illness and dying, rather than conceiving the wide and dynamic determinants of beliefs, values, preferences and practices across structural, religious, social, economic and political contexts.⁶⁷ Meanings of, and responses to, illness, death and dying are clearly not the same across the world.^68,69 Attempts to universally apply Western frames or models of palliative care into non-Western settings may give rise to a “clash of cultures”.⁵⁰ Often what is being imported are not merely clinical interventions or models but core aspects of Western culture: a source of moral authority, a sense of individualism, and scientific and secular or Christian rationalism.⁷⁰

Furthermore, common discourse within palliative care and humanitarian spheres, for example, around “capacity-building,” can sometimes be used to imply that local communities are devoid of their own expertise or strengths; are problematized as having deficits needing to be filled by services and professionals; and hold existing ways of being or doing that are somehow wrong.^60,71,72 Even the phrase “integrating palliative care in humanitarian response”,⁴ seems to perpetuate an idea that a certain model of palliative care is the right way and needs inserting “over there”. Existing global rankings of palliative care progress (eg, Global Atlas on Palliative Care¹⁵ or Quality of Death Index⁴⁷) adopt a deficits approach defined by a Western dominant model of palliative care and implied assumptions that those at the bottom of the lists—mostly low-income contexts—should aspire to the level of progress of those at the top.⁵⁰

Current mainstream palliative care discourse risks reiterating colonial divisions in humanitarian crises rather than seeking to counter them.⁶⁷ However, if viewed through a lens which does away with colonial or paternalistic attitudes to palliative care, and holds culture, context and existing ways of caring and attending to suffering as central, palliative care could instead be seen as an opportunity to disrupt colonial humanitarian health response and advance the decolonization agenda. Emerging public health palliative care discourse holds a purpose to bring to attention the needs of whole populations as they relate to their cultural, social, and political contexts.^59,63 Ultimately, a true appreciation of culture and all its pluralities around illness, dying, death, and bereavement traditions will best guide care for those who are suffering in illness and death.

Indian palliative care physician, Kumar, writes: “The dominant rich country model of palliative care does not suit the rest of the world.”⁷³ The approach Kumar describes is to be found not in the conventional Western track of specialized, medicalized, and professionalized palliative care, but in models of local self-determination and community participation. One could also argue that the dominant medical palliative care paradigm no longer suits the rich countries which continue to promote it: where inequities in palliative care distribution mean that many marginalized groups continue to miss out; and where increasingly healthcare services are looking to attend to the participation and power of affected communities. A decolonial public health palliative care lens overlaps significantly with progressive humanitarian thought toward decolonizing, and localizing, humanitarian response.

Advancing Localisation

Concepts of the HDN and decoloniality have the potential to converge in the localization agenda. The “local” is the natural place for bridging humanitarian-development siloes in chronic or life-limiting illness and supporting efforts toward decolonizing palliative care. Localized approaches to palliative care are not new for communities experiencing illness and death in humanitarian crisis, submerged in social experience and organic response, and steeped in historical informal caring within families and communities.

Public health palliative care recognizes prevailing community models of caring and existing social capital, where communities hold important assets that are central to caring for those with life-limiting illness, those who are dying, and those who are bereaved.⁶¹ A public health palliative care approach accepts that illness and dying experiences are fundamentally social, not biomedical events, and reorientates a dominant medical model toward one embedded in community and social context.⁶³ A social model of caring involves not only the nuclear family, but the broader network of community such as schools, mosques, workplaces, and community clubs, and includes social movements mobilizing for change toward better care.⁶¹

Examples of localized, community-based, and community-led palliative care in humanitarian crisis exist throughout history. In the late 1980s, just as the modern palliative care movement was taking hold as a speciality in Western contexts, bringing people out of homes to care for them in hospitals and hospices, across Africa a mass of grassroots volunteer and community organizations were mobilizing. There were the first responders in the HIV and AIDS epidemic, the pioneers of a community-led movement who brought care to people at home, providing basic care for those with advanced illness or those who were dying, outside any Westernized frame or knowledge transfer of palliative care.⁷⁴

In any humanitarian setting, the organic world of neighbors, relatives, and communities play a central role in responding to crisis and in providing informal, ground-up connection, care, comfort, compassion, and presence in illness and dying.^75,76 The progressive humanitarian concept of localization recognizes local actors as the first responders in crisis and promotes a people-centered approach that is built from locally-specific needs, experiences, and capacities.^21,30,37

In both palliative care and humanitarian response, however, knowledge and practices have evolved from being embedded in family and community to being dominated by professionalized care and so-called “experts” parachuted in from “outside.” Both spheres are guilty of paying lip-service to, and relegating to the margins, the idea of “community” and “local,” and continue to make gross assumptions that very often do not match what communities value, need, or already do. Despite years of debate, translating humanitarian conversations into real change that values the centrality of local actors and creates meaningful community participation has proved “wanting” (p. 37).¹¹ Defining humanitarian needs, experiences, and preferences continues to run counter to localization, driven by donor hierarchy and ego, lacking in (or merely “tick-box” and tokenistic) community-led processes, and devoid of democratic accountability to citizens. Further, the very idea of “local” and “community” has been flattened—rather than being understood as complex multitudes, the “local” has been reduced to the opposite of the “international,” in the same vein as culture is assimilated to something “other” or “over there”.⁷⁷

Similarly, the rise of modern palliative care has concurred with community loss of ownership over caring and dying, and attempts to reclaim its centrality have also proved wanting, lacking critical reflection of the conceptualization and role of community in palliative care: “The direct service emphasis has gradually distorted our understanding of ‘community’ by often making this appear singular rather than plural, by making it appear as target and receiver rather than partner and participant, by locating it on the periphery of care instead of understanding its necessary and central position” (p.14).⁵⁹

Genuine attention to localization in humanitarian crisis means shifting normative frames and moving beyond tokenistic community engagement or tweaks to models of care, to keeping local history, assets, knowledge, experiences, and future hopes at the core, not periphery, of response. The emphasis of public health palliative care on social history and social capital, and on comprehending the full spectrum of individual actors, social networks, and community organizations relevant in caring, provide an important opportunity for progressing the humanitarian localization agenda.

The “New-Old” Dimensions of Caring in Humanitarian Response: Drawing on History to Recover Humanitarian Ethos for the Future

Humanistic acts of comfort and care for the ill, injured, and dying are immersed in humanitarian history and ethics.¹⁹ Several humanitarian authors argue that lost in progressive humanitarian dialog concerning nexus-thinking, decolonization, and localization, is true remembrance, valuing and enactment of the principle of humanity, within which lies compassion, solidarity, relationships, and dignity.^{12,21,72,78,79} DuBois calls for a back-to-basics approach to humanitarian response, committed in compassionate ethos and humble in delivery.²² Bennett suggests that what is needed is a reinterpretation of humanitarian ethos as one of “solidarity, empathy and human connection” (p. 5).¹⁰ Bennett et al state that the system needs to favor “a more honest and ethical response to people’s needs” (p. 74)⁷⁸; and that “building a historical consciousness should encourage the kind of humility Western humanitarian assistance is often accused of lacking” (p. 23).⁷⁸ Revaluing—or perhaps recalling—the purpose of humanity is the principled and ethical place in which to shift humanitarian action toward meaningful and sustained partnerships, community agency, and self-determination.⁷⁹

A palliative care frame which privileges relationships, connection, healing, and dignity provides a substantive lens through which to achieve this. Palliative care holds values of bestowing compassion, restoring dignity, and providing human connection in times of extreme suffering. Palliative care also brings humility through its role in healing, not curing, suffering, its acceptance that death is not a failure or enemy to be fought and defeated at all costs, and its recognition that not all suffering can be mended all of the time: the ability to validate, witness, and sit with suffering are sometimes the most powerful and only care that can be provided.⁶ Rather than viewing palliative care as a new, shiny, technical, resource-intensive, or luxury addition to humanitarian health response, it could instead provide an avenue for helping the humanitarian system recover its historical consciousness of ethos, ethics, and humility in alleviating suffering—an approach that may feel radical and progressive, but not altogether new.

Finally, care for those with life-limiting illness and those who are dying holds great power in forging dialog of compassion, mutual understanding, and impartiality across crises and conflicts. In no situation is the need for humane and impartial healthcare plainer than in the care of a dying person. Suffering in illness and dying reminds us of the simple yet profound universal truth of our humanity and our mortality.⁶ At its heart, palliative care in humanitarian response is unifying and humanizing.

Table 1 summarizes a framework for public health palliative care’s role and opportunity within progressive humanitarian discourse, and ultimately, palliative care’s fundamental value in helping the humanitarian system recover its historical consciousness of humanity and caring in illness and dying.

Table 1.

A Framework for Public Health Palliative Care Within Progressive Humanitarian Thought

Humanitarian components	Synergy of public health palliative care and progressive humanitarian health thought
Philosophical and ethical foundations	Palliative care and humanitarian response share philosophical and ethical roots: the need to alleviate suffering through humane responses and the dignity of human life; and the recognition of our common suffering in illness and dying, our compassionate responses to suffering, and our common humanity.
Humanitarian-development nexus (HDN)	Palliative care is relevant wherever there is suffering and death: in acute and protracted crisis; across health and social care sectors (NCDs, infectious disease, maternal and child health, mental health, aging, social protection); and across all settings of care (hospitals, institutions, primary healthcare, community, home). It requires coordination among international, national and community-level health and social care actors, and flexible, multi-year funding. Palliative care drives integrative and holistic care across and beyond sectoral or time-bound siloes and offers a crucial lens to advance progressive HDN thought.
Decoloniality	Palliative care attends to cultural and contextual norms, meanings, experiences, and practices of suffering and caring. The transfer of palliative care knowledge, capacity, models, and interventions must not be unidirectional or top-down, nor follow a singular path, but recognize mutual knowledge exchange and learning and pluralities in caring in illness, dying, death and bereavement across traditions, cultures, and contexts. Palliative care could disrupt, rather than perpetuate, existing colonial divisions in humanitarian response.
Localization	Palliative care accepts that illness and dying are both medical and social experiences. Approaches to caring in illness and dying exist within community through any crisis and have done throughout history. These hold central, not peripheral, value and should guide contextually relevant, localized, person-centered palliative care by harnessing existing community caring assets, placing local people and communities at the center, strengthening community networks, and mobilizing communities to design change toward better care. The “local” is the natural place for bridging humanitarian-development siloes in chronic or life-limiting illness and supporting an agenda toward decolonizing palliative care.
Recovering historical humanitarian ethos	Palliative care privileges human relationships and connection, compassion, presence, and healing through suffering. It is unifying and humanizing. Palliative care brings fundamental value in helping the humanitarian system recover its historical consciousness of humanity, empathy, solidarity, and witness.

Conclusion

We are in a time of immense debate, introspection, disruption, and (hopefully) transformation in the development of global palliative care and humanitarian discourse. Challenges in caring for those with life-limiting illness, those who are dying, and those who are bereaved in humanitarian crisis parallel the typical dilemmas and critiques that preoccupy the humanitarian sector: curative and medicalized, emergency-focused, bureaucratic, and Western-biased and driven priority setting, knowledge transfers, accountability processes, and financing mechanisms that are failing to meet the needs of local communities. These concerns are at the heart of the push toward progressive HDN-thinking, decolonization, and localization.

This paper asks how palliative care framings can advance humanitarian discourse. It argues that viewing both fields through a “new-old” lens, where traditional caring practices and progressive discourse for a more just and appropriate response intertwine, can advance the humanitarian project. The paper establishes, through critical interaction with a broad range of literature, how 3 main areas of modern humanitarian discourse—the HDN, decoloniality, and localization—can benefit from palliative care thinking. This exploration opens further areas of inquiry—including on how different actors are seeking disruptive change, as well as on how the relationship between palliative care and humanitarianism—particularly beyond humanitarian health—evolves alongside changes within both professions.

Adopting the current dominant frame of a specialized, professionalized, and medicalized palliative care would be setting up the humanitarian sector to perpetuate existing challenges. It would also fail to reach and heal all those with illness suffering. Palliative care in humanitarian crises cannot be delivered in a vacuum without acknowledging the needs, views, agency, and rights of local people and communities, nor connecting aid and care with the social and political circumstances in which they find themselves. These would be misinterpretations of the principle of humanity itself.²¹

Conversely, a public health palliative care approach which privileges history, community, culture, and context, and seeks a balance between medical and social needs, experiences, assets, and future perspectives, could provide an important opportunity to steer a path toward this progressive humanitarian thought. Getting behind this thinking will take the kind of courage, compassion, and humility that palliative care and humanitarian actors alike purport to be so accomplished in. The compelling truth lies not in the newness of either progressive agendum, but in their transformative and radical illustrations of old ways stripped bare.

Footnotes

Author’s Note

Rachel Coghlan is also affiliated to Nossal Institute for Global Health, University of Melbourne, Carlton, VIC, Australia.

Author Contributions

RC conceived the ideas in this paper and prepared and drafted the manuscript. NZC, MP, and PS provided input into the manuscript drafting. All authors have accepted responsibility for the content of this manuscript and approved its submission.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical Approval

This paper did not require an ethical board approval as no human or animal subjects were used in the research.

ORCID iD

Rachel Coghlan

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