Latest posts by Jillian Moore (see all)
- The burden of the gift of aid - Feb. 22, 2017
- What do we palliate? Caring for the sick and the poor - Feb. 13, 2017
- How to take morphine in rural Guatemala - Jan. 09, 2017
- The God of empty spaces: Thoughts on religion and civil society in neoliberal Guatemala - Nov. 28, 2016
José1 is a man in his sixties from rural Guatemala with cancer spread to his bones. He describes deep aches of his shoulders and hips, and indeed, in radiographs we see tumors that nibble at his skeleton like worms. José is not interested in radiation therapy, no matter how his doctor urges he consider it. In fact, José does not often think of his disease at all. Instead, he thinks of money.
José lives alone with his wife. They have no children; his only child was killed years ago in an earthquake. Before he found the non-governmental organization Wuqu’ Kawoq | Maya Health Alliance, he and his wife borrowed a great sum of money from a friend to pay for his surgery. Since then, José has felt too weak to work, and his wife has been too worried to leave him and work herself. Even so, each month they must gather money for electricity, water, and food, not to mention debt payments. José struggles to sleep, and not only because of achy bones. He explains, “I have such sadness and worry all day and night. There is no money, and I cannot work to earn any money, and my wife will not leave me to earn money.”
Wuqu’ Kawoq provides medicines to palliate his pain, and they continue to offer to pay for radiation therapy, which he politely declines. But where does palliative care end? Because if we really wanted to address why José suffers and does not sleep, and why his wife does not sleep either and has taken to selling her own clothes, then we would settle their debt, pay their electricity, and buy their vegetables and milk. What do we palliate, and how do we envision limits to palliative care amid economic precarity and social marginality?
In their essay, Zaman and colleagues outline a postcolonial framework for palliative care, proposing it be approached as “an intersubjective process involving a number of stakeholders such as formal care providers, patients and their family members. The participation of these actors will play out differently in varied and sometimes conflicting (sub) cultures, based on their own priorities.” After accompanying patients in rural Guatemala, I could not agree more.
The word palliate comes from a Latin root meaning “to cloak” or “to conceal.” In medicine, the hospice and palliative care movement arose in the late sixties compelling caregivers to focus on subjective experiences of illnesses, in addition to prevention and treatment. Exactly what this entails has been nebulously defined. A survey of biomedical literature explored how authors describe palliative care to include, among other definitions, enhancing quality of life, optimizing function, assessment and control of symptoms, relief and prevention of suffering, coping with illness, and promotion of own resources. Each definition deeply depends on the local world in which one lives, as one discovers when imagining what suffering, resources or function could mean to different people in different places. Notably, few descriptions have anything to do with physiology at all, emphasizing debility2 and dying as principally social events.
In nations like Guatemala with hollow fragmented state welfare systems, there is limited support for families when someone loses a job or can no longer work because of debility. At the margins of society, people rely on social networks and a tenuous informal labor economy to make do. With debility, one may feel distress as agonizing as pain or dyspnea: to see her children struggle to stay in school, to worry if her family has enough to eat, to know her partner will be left alone in debt. It may be impossible to conceptualize cancer or diabetes except in the context of her social situation.
Humanitarians eager to improve mental health amid conflict meet a similar dilemma. To decide how to structure interventions and allocate resources in these settings, researchers deliberate which elements most affect wellbeing. Some emphasize trauma—those direct exposures to violence—hopeful that with focused intervention people may better bear their daily lives. Others attend to indirect effects of conflict like poverty, hunger, and displacement—injustices Scheper-Hughes calls everyday violence—to maximize intrinsic capacities to recover from trauma. But of course, one cannot so neatly disentangle kinds of violence, nor the complex lives people endure; research has shown that everyday violence like poverty and hunger mediates how one reacts to traumatic violence. To help people feel better amid war and conflict one palliates3 all sorts of violence—the everyday violence and trauma—because they all converge upon the same mindful bodies.
In rural Guatemala, I understand debility as a trauma to a family, a dismemberment laying bare vulnerabilities beneath the surface, those reasons why families resolutely struggle to stay afloat. Such traumas limit people from using tactics they have learned to get by, and expose them to the everyday violence of hunger, worry, and fatigue, all symptoms unconfined to one afflicted body. Illnesses permeate families along moral economies of care. While families and communities have traditionally provided what is palliative care, amid precarity and scarcity, they may not be able to cope with trauma. To help families face debility, we similarly palliate both trauma and everyday violence.
Opening our minds to the realms of suffering palliative care could address, we recognize symptoms like worry, hunger, and fear as legitimate distress worthy of intervention. We can also redefine our responsibility to be not only to an afflicted mindful body, but also to the communities of care surrounding her, providing them the resources they need to care for her in the ways they value.
This quandary of how to define wellbeing is not limited to palliative care. Nurses in the Wuqu’ Kawoq diabetes program feel frustrated to not be able to allay the worries and tears patients bring to clinic. The nurses instead focus on those measures of wellbeing they have tools to address, like blood pressure or blood glucose, but this quandary is magnified in palliative care, which centers on subjective experiences of which worries, tears, and hunger are surely a part. In this setting, when one limits palliative care to mindful listening, morphine and milk of magnesia, she misses the mark.
How would an open-minded palliative care work in practice? Most non-governmental organizations have budgets bounded by donor generosity, so they must decide how to distribute what little they have to those who need it most. Groups define criteria to identify whom to care for: for instance those with select conditions, living in particular places, below a specified income level4. People meeting criteria for the palliative care program would be offered home visits, medicines, and perhaps food, school fees, or debt relief.
Essentially, what should be citizen entitlements would become privileges granted to those with debility severe enough to be considered relevant. By targeting some problems over others—diabetes over unemployment, cancer over homelessness—regimes of biolegitimacy are created in which certain people are provided dignities like nourishment and economic stability, not for reasons of justice, but for the biological conditions of their bodies. If we are not careful, people may be reduced to medicalized “apolitical, suffering bodies” and decontextualized from the structures underlying illness and poverty, structures that remain hidden and intact.
Palliative care improves subjective experience to help people endure debility. Accordingly, we must recognize we cannot easily disentangle physiological symptoms of disease from those of social injustice, for injustice is inscribed upon and experienced through the body. Rather than targeted vertical programs, groups should focus on comprehensive community care5 and support other healing modalities like religion6 and political activism. Still, on the ground, programs with limited resources may become unfortunate triages of human experience, but upon whose values are those judgments based? Caring for the sick and the poor involves navigating imagined borders between sorts of suffering, which can feel absurd and cruel, for no matter how high a wall we build, we are no further from those living on the other side.
2 Livingston uses debility to refer to “the impairment, lack, or loss of certain bodily abilities,” that encompasses “experiences of chronic illness and senescence, as well as disability per se.”
3 Importantly, we also mend sources of war and conflict. Though beyond this essay, humanitarianism notoriously addresses downstream effects of violence but not its political roots (at times exacerbating those roots and effects).
4 It is tough to quantify income where people do not have stable employment. Some use the Quick Poverty Score, developed for the microfinance industry, which calculates household risk of living below certain poverty lines based on associations with factors like the make of your floor, or whether you own an electric iron.
5 Especially in poor communities, palliative care must accompany preventive and primary care programs, which Wuqu’ Kawoq does very well.
6 I contemplate religion and civil society in another essay.