Long Read | Decolonising care and its ethics

When psychiatrist Frantz Fanon reflected on the role of doctors during the Algerian struggle for liberation in his 1959 essay “Medicine and Colonialism”, he emphasised the consequences of physicians’ class interests. More bluntly put, he tore into the colonising complicities of his ostensibly humanistic profession.

Although the physician presents himself as “the doctor who heals the wounds of humanity”, Fanon writes, he is in reality “an integral part of colonisation, of domination, of exploitation”. Both the European colonial physician and the native Algerian physician are “economically interested in the maintenance of colonial oppression”, which yields them profit and elevated status. One of the chief services doctors provide to the perpetuation of oppressive systems, Fanon notes, is the use of scientific objectivity to obscure the role of politics in driving the sickness and death they dutifully treat and then bury in medical statistics.

Are Fanon’s criticisms of medicine’s complicity with politically structured violence relevant today for those of us working in the world’s richest health system? Though much separates us from 1950s Algeria, everyday life in the United States is also built on enduring systems of segregation and domination enforced by inequalities in policing, incarceration, education, economic opportunity, housing and healthcare, driving thousands of preventable deaths each year. And as has been made especially clear during Covid-19, the US economy has long operated by treating low-paid workers as expendable. Alongside these conditions, American physicians enjoy distinctive status and economic privileges, including highest-in-the-world physician incomes that are, on average, almost 10 times greater than those of their patients. 

Although they treat the sequelae of poverty every day, doctors in the US have historically failed to use their collective influence to address political aetiologies of disease. Now, for the past year, the pandemic has preyed on America’s racial and economic inequalities. This reality has awakened many more doctors to the political determinants of health – that health is not just about healthcare and is inseparable from power and political struggle. It has also fractured the traditional medical objectivity that records politics as biological misfortune. During Covid-19, calls for equity, justice and decolonisation have grown louder within healthcare, echoing traditions of social medicine that have long been relegated to the fringes of American medicine. 

Such gestures abound, but it is unclear whether they will translate into structural shifts in the political economy of care. By what means and on whose terms might genuine health equity and racial justice be pursued? What are the ethical-political paradigms that can take us beyond righteous rhetoric to changes in material conditions for the most marginalised? How might we build a decolonial politics of care?

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We might look to Fanon for guidance. As he observed in “Medicine and Colonialism”, physicians working in oppressive political contexts – including doctors hailing from historically subjugated groups – are aligned more with the repressive police apparatus than with genuine care unless they commit to sharing the circumstances of the most vulnerable. It is only when doctors are themselves “sleeping on the ground”, Fanon writes, and “living the drama of the people” alongside the oppressed – rather than enjoying lucrative careers and privileges – that they may become genuine allies against structural oppression rather than subtle collaborators with systems of racial and class domination. Few will give their lives as fully to the ongoing struggles for decolonisation and care as Fanon did while he treated both Algerian freedom fighters and their French torturers. But we all share an ethical duty to confront the destructive consequences of the medical community’s frequent inward preoccupations with its own class interests and to redirect attention outward towards those who have least in a context of increasingly pathological inequality.

Fanon’s vision of the conditions of possibility for a genuine bond of solidarity is echoed in the principle of “accompaniment” that is at the centre of the work of global health practitioner and physician-anthropologist Paul Farmer. For decades, Farmer and his colleagues at Partners in Health have achieved remarkable health improvements by investing directly in community members in dispossessed global contexts to work as accompagnateurs – those who accompany – alongside their neighbours.

But accompaniment is not simply good for public health and medicine. It also holds much broader promise for community-building, an ethically oriented politics of care and the abolition of inherited structures of oppression that often subtly reproduce themselves in our very efforts to undo them.

Negotiating the everyday

It is my friend Pamela, more than anyone else, who has drawn me into a practice of accompaniment and taught me what its stakes may be for the worlds we make. Pamela is 70 years old and lives in one of Chicago’s many intensely segregated and disinvested neighbourhoods. For the past five years, she has brought me – as a medical anthropologist and her regular writing partner – into the spaces and negotiations of her daily life.

Pamela fits the medical profile of someone most in need of protection from exposure to SARS-CoV-2. She had a serious stroke two years ago. She survived breast cancer after undergoing chemotherapy and radiation, resulting in chronic lung injury. She also has diabetes and significant kidney dysfunction owing to decades of lithium prescribed to treat a diagnosis of bipolar disorder. Reflective of psychiatrists’ desperation in the face of material and social realities such as homelessness and violence, she has been prescribed antipsychotic medications for decades to treat additional (mis)diagnoses of schizophrenia, major depressive disorder and post-traumatic stress disorder. 

“Because they can’t fix nothing real in my life, the doctors just try to put me to sleep,” she often tells me. 

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Pamela’s health problems are testament to the cumulative effects of inconsistent healthcare access and quality, housing instability, repeated incarceration, trauma and other manifestations of structural racism shaping first her childhood in Chicago and then subsequent disadvantages.

During the pandemic, lacking adequate support to allow her to stay at home, Pamela has been forced into “essential” labour to be able to pay rent and basic bills. For several weeks she was picked up at 4am to be driven by full-sized van along with 10 other workers – all Latina immigrants and Black women – to a factory in the Chicago suburbs where she worked 12-hour shifts dipping pretzels in chocolate. She was eventually fired because she was deemed too slow on the production line. 

“Well, it’s frustrating because the hours were nice and let me have the evenings free to relax,” she said when I asked her about it. A third of her meagre wages had gone to pay for transportation via the van – an enclosed, crowded space that put her at extremely high risk for contracting the coronavirus – arranged by the temp agency that had found her the job. Pamela has since rotated through various jobs on assembly and packing lines, each followed by an unceremonious firing after a few weeks. 

The little I have shared here about Pamela, with her encouragement and editing, does not come from a clinical encounter in my capacity as a medical trainee and healthcare worker. It emerges from long-term friendship and ethnographic research predicated on the belief that genuine redress of structural violence requires us to commit to living alongside marginalised individuals and accompanying them, insofar as is possible, in the negotiation of everyday struggles.

An ethical act

For Farmer, accompaniment is an open-ended theological concept that draws on the Marxist-Catholic tradition of liberation theology and Father Gustavo Gutiérrez’s emphasis on a “preferential option for the poor.” It is defined by an epistemic humility that undercuts the condescending logics of humanitarianism, philanthropy and racial uplift or interclass mentorship in which the dispossessed are presumed improved by the privilege of learning from upper-class peers. These fantasies of “helping” the downtrodden often operate through a disavowal of – and resistance to changing – the ways in which the wealth and power of helpers is sustained by the violation of those who are the ostensible beneficiaries of their presumed aid and wisdom.

To accompany means to depart from such colonising paradigms. As Farmer explains, “To accompany someone is to go somewhere with him or her, to break bread together, to be present on a journey with a beginning and an end … There’s an element of mystery, of openness, in accompaniment: I’ll go with you and support you on your journey wherever it leads. I’ll keep you company and share your fate for a while. And by ‘a while’, I don’t mean a little while. Accompaniment is much more often about sticking with a task until it’s deemed completed by the person or people being accompanied, rather than by the accompagnateur.”

This orientation demands a commitment to the other as the one who sets the goal and charts the path. It requires the one who commits themselves to accompanying to recognise and bracket their own assumptions, desires and systems of value so as not to overwrite the otherness of the other with oneself. Like the most worthwhile goals, this is ultimately impossible; accompaniment will always demand more of us than we will manage to fulfil. But it is precisely through a persistent distance from the horizon of genuine justice that we can know we are keeping it in sight rather than replacing it with a mirage of our own self-satisfied righteousness.

Accompaniment as praxis thus provides a sorely needed supplement to dominant frameworks of “ethics” in the US medical profession in which virtue-signalling moralisation is rampant while real-world effects are often an afterthought. I lean here on Jacques Derrida’s notion of supplementarity as stressed by postcolonial theorist Gayatri Spivak in the theory of change – what could be called an open-ended project of decolonisation – she draws out of the work of the Subaltern Studies Group. The supplement is that which provokes a “functional change in a sign-system”. It marks a lack in the existing order with which we explain our worlds, ourselves and the lives of others. A functional change in a sign-system, Spivak notes, is “a violent event” with power to bring crisis to a head and to turn upside down the world as it is. It opens the possibility for genuine action by disrupting the stability of what we thought we knew, breaking and then linking anew the chains of signifiers by which we produce meaning and construct the material conditions governing the worlds we make.

At its best, accompaniment – through its attunement to the most dispossessed among us as those who would dictate our responsibilities and the terms by which structural redress should be guided – supplies a continuous stream of ethical supplements, compelling an unending process of breaking and more expansively remaking the links by which we are bound together.

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Pervasive appeals to ethics within the medical profession are ripe for such disruption, as they often function as a means of deflecting engagement with actionable political agendas. While this may be true of the rhetorical uses of ethics across many domains, it is especially so within healthcare, which has strategically fashioned itself over the past century as an apolitical, technocratic enterprise with only incidental relation to the politics of care. In this context, ethical debate – a hallowed pastime of professors and white-coated doctors in universities with multibillion-dollar endowments – permits powerful actors to distance themselves from ongoing failures to own political responsibility in relation to the manufactured conditions driving preventable sickness and death in the world’s wealthiest nation. It allows the beneficiaries of current arrangements to place the burden of complicity with profit-driven systems delicately on well-buffered consciences rather than follow its implications for necessary systems changes, genuine institutional criticism, political organisation and personal tax returns.

In theory, ethics asks us to question what constitutes “the good” – the values and systems of valuation around which we should design our collective structures and individual lives. But what are the means and standards with which we pursue this questioning? Who gets to decide the good, for whom it applies and what it might demand of us? American medical ethics as a field and training curriculum has largely evaded a more humble interrogative mode and instead typically fallen back upon the confident assertion of keywords: “autonomy” and “non-maleficence” alongside undemanding formulations of “beneficence” and “justice” (and, more recently, “equity”, largely – a view from outside might suggest – to prop up the branding of doctoring as an intrinsically virtuous profession). This approach to ethics provides politically neutral guidance meant to be universally unobjectionable to physicians regardless of “personal philosophy, politics, religion, moral theory or life stance”. In essence, this institutionalisation of ethics, expressly divorced from politics, consists of two minimal injunctions: don’t override a patient’s freedom to choose for themselves and don’t cause harm. 

But what of people who rarely make it to a doctor in America’s fee-for-service system? What responsibility does a physician have to safeguard the positive freedom of individuals – for example, the freedom to obtain high-quality healthcare or access to the means to prevent disease, such as housing, income and food security? What are the parameters of our ethical responsibility to others, and how can we know them?

Accompaniment provides a means of formulating a response to these questions in which ethical discourse is not allowed to serve as alibi for non-accountability to real-world effects and to the political struggle that genuine care requires. Accompaniment is at once an ethical act, a method for following ethics’ demand to interrogate and constantly reformulate the good by privileging the positions of the most marginalised, and a guide for urgent political action. It seeks to tether ethics to politically determined realities, tying together care as abstract principle with care as the concrete acts of accompanying others through everyday life within violent social systems while applying oneself to changing these systems. 

A political commitment to care

To apply the practice of accompaniment towards systems change requires putting programmes and institutions to use without ceding to them as final arbiters of value. It is in the nature of institutions to blunt open-ended ethical demands that seek to redistribute power and priority to the dispossessed. In all programmatic interventions, then, it is imperative to anticipate and to refuse the reduction of accompaniment to bureaucratic ticks. We must lean on the practice of accompaniment itself – on the needs and interjections of those accompanied – to perpetually unsettle the threat of its institutionalisation.

With this proviso, there are several ways the medical profession can put accompaniment into systematic practice. First, to begin to bridge the troubling distance between the everyday lives of US physicians and their patients, the concept and work of accompaniment should be made core to medical training and practice. 

With protected time regularly set aside explicitly for this purpose, every trainee and practitioner should be paired with a structurally vulnerable community member to whom they commit to being an accompagnateur beyond hospitals and clinics. This may mean lending a hand for visits to the community food distribution centre or laundromat, taking a walk, cleaning a bath, open-ended telephone calls, attending a medical appointment, or negotiating welfare or health insurance bureaucracy – that is, whatever the one accompanied asks. From those we accompany, we might learn what genuine care requires, how structural violence manifests, how to listen, and what the unmet needs and desires of the people who present as our patients may be. We may also come to appreciate the value of what those who are so often rendered as only passive recipients of care have to teach and to give to others. 

This integration of accompaniment into medicine would serve as a counterpoint to the bureaucratically constrained and momentary clinical “encounter” in which the healthcare provider represents authority and acts as expert source of knowledge. In contrast to such clinical scenarios, accompaniment entails ceding one’s presumptions and humbling oneself so as to genuinely meet the other and to follow where they lead on their own terms and timelines. While medical training clearly must entail the development of authoritative command over technical knowledge, effective medical care is not purely technical. Doctoring inheres in acts of care and the commitment to hear and respond to the needs of others. Accompaniment provides a means by which doctors might begin to learn an essential dimension of such care: the practice of personal and epistemic humility.

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Of course, the everyday work of accompaniment is not the most efficient use of highly specialised caregivers such as physicians, who endure long years of arduous training and demanding daily labour. It should not be their primary role. But my wager is that investing in accompaniment would yield multiplying returns for physicians, patients and the healthcare system writ large. Time devoted to accompaniment would likely result in more effective clinicians and aid in the recruitment of future doctors devoted more to genuine care and equity than to status. This, in turn, may improve physician satisfaction – a serious concern in an increasingly technocratic field rife with burnout and professional discontent despite high monetary rewards. By contrast with many proposed reforms for burnout, accompaniment would address this problem through a patient-oriented resocialisation of care via concrete acts rather than, for example, doctor-focused exercises in medical humanities that provide momentary distractions but little in the way of material effects. 

Indeed, accompaniment provides a hands-on means of improving physicians’ understanding of the structural determinants of health and of formulating effective political responses by foregrounding the perspectives of those most harmed by existing policies. It makes it impossible to ignore that, as the tradition of social medicine has long taught and that the pandemic has recently underlined in bold, effective care requires political – not just clinical – commitments to serving our patients and opposing the policy violence of deficient welfare systems, racial inequality, punishment systems and a perverse economic order. 

Last and most important, for purposes of effective public health, accompaniment must be put to work beyond the exclusive class of medical professionals. It should primarily consist in building a massive community health worker corps comprised of individuals already living in the communities they are trained and continuously employed to serve as the cornerstone of a functional public health and welfare infrastructure. Rather than models of aid that aim to uplift from without, community health worker programmes in the model of accompaniment invest directly in residents of marginalised communities, supporting them with resources, meaningful work and organised purpose to rebuild the social ties and material health that ongoing histories of exploitation and extraction have taken from them. It is through this epistemically humble, decolonising practice of care that we can begin to genuinely respond as a society to the social alienation, economic and medical disenfranchisement, distrust and resulting aggression that has become so apparent and threatening to the American body politic.

The lessons of accompaniment

Accompaniment as both ethos and concrete practice is key for revitalising medicine and building public health, but it is also a much broader framework for policy and political responsibility. The pandemic compels us to confront the fact that circumstances such as Pamela’s are politically determined, not accidents or surprises. It has made clear that we need a bold politics against inequality that fights for robust public systems of support.

These systems should be guided by the lessons of accompaniment in which we put the ostensible ethics of care into an everyday political practice dedicated to dismantling inherited inequalities of power, suspending pernicious moralisms and restoring to dispossessed communities the material resources required to craft full, satisfying lives on their own terms.

This article was first published in the Boston Review.

Eric Reinhart

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