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Catastrophe, Caregiving and Today’s Biomedicine

Arthur Kleinman and Bridget Hanna

Department of Anthropology, William James Hall, 33 Kirkland Street, Cambridge, MA 02138, USA

E-mail:[email protected]

Abstract

Many factors, including the increasing commercialization of biomedicine, have caused medical

practice to be increasingly divorced from the practice of caregiving. In this article, the authors

argue that the two must be reunited in multiple ways if we are to have a just and compassionate

healthcare and medical practice.

Keywords Biomedicine, Caregiving, Health Crisis, Medical Ethics, Social Suffering

The blindness of biomedicine

Pablo Picasso painted an evocative piece entitled The head of a medical student (Figure 1).1

This picture’s distinguishing attribute is an African mask-like head with one eye closed and

the other wide open. The juxtaposition of an open eye and closed eye creates the sense of

tension so characteristic of medical students. One eye is open to the world of pain and suf-

fering; the other shut tight, perhaps to protect the self from too much adversity, or perhaps

to serve the self-interest of the budding physician. Picasso’s myopic medical student can

point us towards the newer blind spots we find within medical education and medical

practice. Beyond the protection of self and self-interest and the issue of institutional

indoctrination there are other barriers to an ethical medical practice, including the accele-

rated biologization and commercialization of medicine and genetics, the hype surrounding

Arthur Kleinman is the Esther and Sidney Rabb Professor of Anthropology at Harvard University. Since 1968, Kleinman, who is both a psychiatrist and an anthropologist, has conducted research in Chinese society on mental illness and violence. His chief publications are What really matters (2006), Writing at the margin (1995), Rethinking psychiatry (1988), The illness narratives (1988), Social origins of distress and disease: Neurasthenia, depression and pain in modern China (1986) and Patients and healers in the context of culture (1980). His current work and forth- coming book deal with care and caregiving.

Bridget Hanna is a PhD candidate in medical anthropology and media anthropology at Harvard University. She works in India on issues of medical expertise in relation to environmental illness, and on the sociopolitical effects of chemical and medical contamination. She is founder and director of the online archival project, The Bhopal mem- ory project, and is co-editor of the 2004 anthology The Bhopal reader. Hanna is also an activist and a film-maker. Her first short film ‘This much I know’ debuted in film festivals in 2008.

1 Kleinman comments on this picture in more detail in What really matters: Living a moral life amidst uncertainty and danger (New York: Oxford University Press, 2006).

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BioSocieties (2008), 3, 287–301 ª London School of Economics and Political Science doi:10.1017/S1745855208006200

pharmaceutical panaceas, and the worsening specialization of medical training. What we

find is, increasingly, a radical division between the work of medicine and the work of

care and caregiving.

Why biomedicine and caregiving? Although the delegation of caregiving work to nurses

and others has long been standard practice, the professional practice of medicine, the proli-

feration of medical technology and the exigencies of the healthcare industry have been push-

ing doctors even further from the intimate engagement with another’s suffering that is

inherent in the labor of taking care of another human. The many advances in the biosciences

have by no means eliminated pain, disability and illness. On the contrary, advances in health

have drawn out the end of life and more people now live to develop a long-term disease or

chronic condition. The uncertainty that makes each of us constantly vulnerable to incapacity

Figure 1. Pablo Picasso, Head of the medical student (study for Les Demoiselles d’ Avignon), 1907 gouache and watercolor on paper, 60.3 · 47 cm. Digital image ª 2008. The Museum of Modern Art/Scala, Florence.

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has in fact never been far away—yet medicine does not require of its practitioners that they

engage this directly. And even though technological approaches have radically individua-

lized bodies as sources of genetic information and targets of designer drugs, they have

also further alienated medical doctors into lucrative specialties, business models and techno-

logies, and away from the work of caring that we believe is central to healing and amelior-

ating the debility that cannot be healed.

Biomedicine’s increasing willingness to give up caregiving as a practice and preoccupa-

tion, and its almost total fixation on technology-driven diagnosis and intervention, indicates

that biomedicine is less and less a site for caregiving. It has been pulled further away from

the needs of its clients and is increasingly organized around the cultural, economic and polit-

ical power of institutionalized science and technology. The crisis in caregiving makes it clear

that the business and bureaucratic models that govern this apparatus have estranged it from

the people it is supposed to serve, exacerbating forms of social suffering. This is evidence of

the implacable progression of technical rationality within a political economy and global

culture that is organized around technology as the driver of medicine. We can, in fact see

the crisis of our contemporary world visualized through the increasing alienation sympto-

matic of the professionalization of medicine.

One of the major themes of this article is the existence of social suffering and the obsta-

cles to its relief. These include major processes—such as the way that bureaucracy inter-

venes in caregiving and the way that in this culture we’ve split social policy from health

policy. Even though today there is increased concern regarding the political economy of

health and the social roots of disease, we don’t think that nearly enough has been done to

investigate the ways that social responses to policy and programs can actually worsen health

outcomes and become obstacles to effective interventions that involve not just the bureau-

cracy and not just the business models, but the very way that the profession has developed.

The commercialization of knowledge is just one of the persistently negative effects of a

reductionistic materialism that has come to thoroughly dominate the profession, blinding

it to the needs of patients.

We believe the medical system has much to learn and give in engaging with those who do

play central roles in caregiving: namely women, the elderly and the marginalized groups that

dominate home healthcare delivery systems. We believe that by engaging more centrally in

the practice of caregiving the helping professions (medicine, nursing, social work, etc.) can

be liberated from a narrow technical perspective in order to play a more prosocial role in the

moral activities that enhance human experience.

In this article we ask about the moral condition and ethical orientation of medicine in

relation to this schism, and about the consequences of the separation of medicine and

caregiving. We approach the relationship between medicine and caregiving in multiple

and reiterative ways, attempting repeatedly to understand how they have become estranged,

how they can be united, and why they must be kept together. These questions are not

straightforward—thus we have chosen a format that extends from the local to the global,

from the deeply personal to the political in a series of movements that illustrate what we

see as the pressing need to orchestrate a fundamental change in the way that medicine is

practiced, taught and understood. Caregiving, for us, is a vivid and urgent lens through

which the impoverishment of contemporary biomedical models becomes obvious, and

perhaps more importantly, another type of engagement can be imagined.

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In the first movement, we will lay out the current status of caregiving and catastrophe,

our own personal engagement with these themes, and what medicine has to learn, or

relearn. In the second, we will discuss caregiving acts by individuals as a type of ‘anti-

heroism’, all the more important for both doctors and lay persons at a time when the

hype and commercialization around health and illness would have us believe that suffering

is an aberration rather than a human condition. In the third movement we discuss the med-

ical humanities and the critique they offer to medical education. In our final movement, we

move up in scale, looking at the new model of global health and its engagement with social

suffering as an example of a biomedical model that succeeds because it integrates caring into

praxis.

In this article we do not simply want to draw attention to the limitations of the standard

model of biomedicine, but more precisely we want to show how prosocial activities—of

which caregiving is a prime example—are crucial aspects of how local worlds are made

and how increasingly global and cross-cultural practice can and must help us understand

and change this dysfunctional model. To begin with, we see caregiving as a fundamentally

human interaction that can produce powerful relationships and enhance communities, and

therefore needs to be understood in its own right.

Things as they are

Aside from skilled nursing, rehabilitation efforts by physical therapists and occupational

therapists, and the practical assistance of social workers and home health aides, caregiving,

especially for victims of health catastrophes and end-stage conditions, can be very discon-

nected from medicine. Caregiving is primarily a matter of families, close friends and the

afflicted individuals themselves. It is they who struggle with the activities of daily living

such as bathing, feeding, toileting, dressing, and who spend the long hours of working

around, through and with pain, functional limitations, memory loss, agitation and the

many other difficult realities of the most serious health problems.

To illustrate this point, we draw on our personal life stories and experiences of care-

giving. We draw on personal stories because they loom large for us, and also because their

proximity is indicative. Caregiving is a necessity that can arise in anyone’s life. Kleinman

has had his life transformed by taking on the role of primary caregiver for his wife, Joan

Kleinman, who is suffering from a severe neurodegenerative disorder that has affected her

memory, motor functions and restricted her independence. He wakes her up in the morning,

and assists her in toileting, bathing and dressing. He makes their breakfast and helps her

feed herself. He assists her in walking, placing her in a chair, and in their car. He is with

her nearly all the time, protecting her from injuring herself because she can neither see

nor navigate safely either on the street or in their own home. He reads the newspaper and

books to her, explains stories on the TV, selects music for her to listen to, and makes tele-

phone calls for her to their children and grandchildren. He prepares lunch and dinner and

helps her eat; and he does all the things required to get her ready to go to bed at night.

Of course, their children, his mother, his brother and others call and help when they are

able, and several times a week they are assisted by a professional home healthcare helper

who does the wash, cooks several meals and spends the day-time hours with Joan.

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Joan herself does as much as she is able to do. She rarely complains and, with the excep-

tion of occasional agitation that is beyond her control, she struggles to enjoy life, and usu-

ally succeeds in doing so. In this and several even more crucial ways she is her own

caregiver. She keeps up her part in conversations, emotional exchanges and moral relation-

ship. While it is greatly disturbing to witness a once elegant, intellectually lively and highly

independent companion of over four decades deteriorate, emotional reactions from frustra-

tion and anger to sadness have been cushioned and sublimated by their work together, the

long rhythm of their days together, and most of all by the support of family and close

friends. That ‘support’ is as much a part of caregiving as all the mundane practices we

have listed, and amounts to moral solidarity with their struggle and concern and responsib-

ility for them. Without it, it is hard to imagine how they as a couple would be able to endure

and go forward.

Bridget Hanna’s life was also touched by the need for caregiving. At the age of 17 her

sister Molly Hanna, three years her junior, was diagnosed with stage four neuroblastama,

a very aggressive pediatric cancer. Hanna’s parents asked her to leave university to return

home and help with caregiving for Molly. While she was never the primary caregiver for

her sister, she witnessed and assisted in the labor of four years of intensive and toxic

treatments, life-affirming healing and intense suffering. Though the cost was often high—

particularly on their mother who shouldered the primary burden—the practice of caregiving

created entirely new communities of friends and healers around Molly. When the ultimately

tragic end came, Molly left behind a group of people who were stunned and grief-stricken

by her death, but also transformed by their physical connection to her, her illness and her

struggle.

We give you these highly personal sketches because it is the best we can do to illustrate

what caregiving entails, and why it is so crucial to all of our lives and the human condition

more generally. Caregiving, as illustrated by our cases, is about acknowledgment, concern,

affirmation, assistance, responsibility, solidarity, and all the emotional and practical acts

that enable life. Caregiving also includes what happens when hope and consolation are

abandoned, when theodicy is ended, and when all there is to do is to be present with the suf-

ferer, sharing his/her suffering by simply and usually silently just being there. There is a

painting that once upon a time hung in Children’s Hospital in Boston; the sun is rising,

an exhausted pediatrician, in the pre-antibiotic era, holds the hand of a child who has just

passed through crisis and lysis of a fever. This too is caregiving. Caregiving is interpersonal

experience, the concern and compassion of the healer, the response of the carereceiver, and,

in a larger sense, love.

So, what is the status of caregiving for health catastrophes and other serious conditions

in biomedicine today? While medical educators will claim that caregiving is still central to

what it means to be a physician, and will point to courses and practitioners that teach the

art of caregiving to students, the on-the-ground reality is much more uncertain and fragile.

Most physicians, outside of primary care providers, do little in the way of hands-on caregiv-

ing. Hospice doctors are caregivers; and physicians who routinely deal with end-of-life, such

as oncologists and cardiologists and nephrologists and gerontologists, are surrounded by

caregiving opportunities, yet few participate in the nitty-gritty of caregiving—leaving the

practical assistance and emotional tasks to nurses, social workers and the patient and his/her

network of support. In medical school, the curriculum in both the basic science and clinical

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clerkship years places the great emphasis on understanding disease processes and high-

technology treatments. The illness experience gets less and less pedagogic attention as the

student progresses from classroom to inpatient ward and clinic. And in the broader system

of healthcare, students can all-too-readily discern that medicine largely leaves caregiving to

others. Those others include nurses, whose professional science has made caregiving a cent-

ral element of knowledge production and training. Yet this knowledge is largely unavailable

to young physicians and medical students, and is provided as a sidenote rather than a

foundation. Its association with a lower status profession perhaps even gives it something

of a stigmatized status. It is notable that caregiving still has a strong gender bias. Most

caregivers are women. And historically and cross-culturally this is even more impressively

true. Yet the increasing number of women in medicine has not changed the situation.

What is particularly true of our time, and especially in our own society, is that the structure

of service delivery and the funding of health services work to discourage professionals from

the art of caregiving and can in fact undermine the practitioner’s efforts. Part of the mistrust

of doctors is the growing sense that they seem uninterested in caregiving.

Recognizing this tenuous and contested status of the knowledge and practice of care-

giving in medicine, the late, great American physician-educator Walsh McDermott once

proposed, perhaps tongue-in-cheek, that the caregiving and technological roles of the doctor

might be separated, and the former dropped from medicine as a burdensome and poorly

cultivated anachronism. Almost no educators would agree with McDermott’s provocative

suggestion—and even he probably would have withdrawn it from consideration if he

thought it would be taken seriously, rather than stimulate reform—but if we are willing

to honestly look into the actual situation of caregiving in today’s medicine, we must come

away with the accumulating sense that caregiving is at best inadequately taught and sup-

ported among students and physicians, and at worst is a hollow skill that has been emptied

of content, commitment and competence. It is a vestigial component of medical training and

practice that occupies an ambiguous and uncertain position in the profession, as marginal as

clinical experience is in the age of ‘evidence-based’ practice, and is in danger of becoming a

platitude that is taught hypocritically and learned only to be unlearned as part of the hidden

curriculum in medical student and residency education.

If this conclusion strikes the reader as overly bleak and unjustified then we must ask

what serious effort has been made in determining and operationalizing the knowledge basis

needed to provide good care? What time has been allotted for acquiring this skill in medical

school and residency training; for example, do students get placed in caregiving situations,

say, in the homes of victims of health catastrophes, so that they actually experience care-

giving? What provisions have been made to evaluate the doctor’s skills in caregiving?

And, overall, how has caregiving been developed as a crucial academic subject requiring

theory-building, empirical research and applied science contributions? How often is assessment

of caregiving skills taken as seriously as assessment of basic and clinical science knowledge?

Has medicine—under the great influence of global political economic, bureaucratic, techno-

logical and cultural change—turned its back on the medical art and the thousands of years

of humanistic approaches to medical practice cross-culturally? Has the hugely powerful

biotechnology-medical-industrial complex, the over-bureaucratized healthcare system with

its stark regime of efficiency on behalf of the god of cost-containment and its new

culture of audit, and the global cultural revolution of hyperindividualistic consumerism

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and Internet-spread marketing of the latest drugs and surgical procedures separated

medicine from caregiving? Does the experience of competent caregiving mold doctors’

careers nearly as much as the evidence of clinical science?

Experience and anti-heroism

For the medical anthropologist, people everywhere live in the flow of interpersonal interac-

tions in local worlds—networks, families, institutions, communities. Experience is that

flow of words, movements and emotions between us. Experience seen this way is not only

local, it is inherently moral. Why so? Because living our lives is about animating and enacting

values. We are constantly experiencing, negotiating, defending and just living values. Those

lived values are the things that are personally and collectively at stake for us: for example,

status, reputation, resources, connections, religious and cultural practices, and so on. Moral

experience is the flow of things at stake in local worlds. Our own moral life may be consist-

ent with or in conflict with our local worlds of experience. We can collaborate with such

worlds or seek to resist and transcend them by our aspiration for ethical commitment.

The clinic, the hospital, the HMO (Health Maintenance Organization), the medical

school or the family setting of caregiving for victims of health catastrophes are just such

local worlds of moral experience. Those local worlds are deeply affected by the massive eco-

nomic, political and cultural forces of our globalized era. One particularly egregious

example is the hyping of claims by the biotechnology industry, by medical researchers and

by specialist practitioners of how much we know and can control in health and disease.

The economic incentives for hyping are not difficult to appreciate. The cultural sources of

hyping affect not only the medical industrial complex, but also the financial management

industry, the insurance industry and the national and international policy domains. Much

more is claimed than is actually known. It is often said, for example, that half of all cancers

are curable but, as social psychologists have shown, just turn it the other way around—half

of all cancers are incurable—and excessive optimism is replaced by more sober reflections.

Most chronic diseases can only be managed, not cured, and their sequelae in long-term,

disabling consequences such as blindness, amputation and kidney failure in diabetes cannot

be controlled either. In the specialty of psychiatry, for all the important advances of

neuroscience, we still don’t possess a single biological test for routine clinical use to

diagnose depressive or anxiety disorders or schizophrenia. And while the drug treatment

of serious depression has improved, still 35% of patients are treatment-resistant and the

placebo effect itself in most clinical trials accounts for a 45% improvement over against

65% for antidepressants—nowhere near the huge claims made by the pharmaceutical com-

panies. Prognosis not only for mental health conditions, but for most chronic disorders,

remains difficult and uncertain.

Now add to this picture all those things in the natural world—like forest fires and brush-

fires, earthquakes, floods, droughts and climate change—that affect hundreds of millions of

people, and the idea that we know, can predict, and can control events looks highly suspi-

cious. Political violence, financial crises, outbreaks of food contamination, major accidents

and the dozens of other dangers that are a regular part of our lives only clarify more fully

that the very idea of risk management is overblown and unsupported by the evidence.

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In fact, danger—natural and social—has been, and will for the foreseeable future continue

to be, inadequately understood, poorly predicted, mostly uncontrolled and largely unpre-

ventable. That is to say, danger and uncertainty are an ordinary element in everyday living

everywhere—more notably among the poor, but affecting all of us.

This is a picture of a huge discrepancy in our local worlds between the dominant moral

reality that encourages exaggeration of knowledge and treatment and the genuine reality of

our existential condition. The implications of this reality gap for health and medicine are

simply enormous. Patients are misled by the media’s hyping into highly distorted views of

what medicine can do. This has consequences for caregiving relationships, in that caregiving

responsibilities most often come as an unpleasant, unplanned-for shock, delegated to mar-

ginal persons or social groups, rather than an understood part of life and moral responsi-

bility to one another in relationships. But health professionals and students are also the

victims of routine hyping in the medical literature. It is understandable that researchers

and medical research administrators will participate in this process in order to secure greater

public and private funding, but it is nonetheless deeply troubling that the scientific enter-

prise itself has been distorted by global economic and cultural interests. Add to this the cor-

rosive, yet accurate popular idea that conflict of interest is rampant in medicine, and the

widespread suspicion that health professionals are more interested in their own financial

condition than in the conditions of their patients, and we all can understand why distrust

of physicians has skyrocketed almost everywhere while the status and prestige of the profes-

sion has fallen.

This tension is particularly apparent in a local setting like a research lab or clinic. There

is immense pressure on young researchers and young clinicians to collaborate with estab-

lished practices as they write grant applications, explain research projects to the media or

elicit informed consent from patients. Think of this as a cultural influence on the way pro-

gnosis is explained to patients being offered a new medication or surgical procedure in a

clinical trial or for treatment. The price to pay is high for young researchers or clinicians

who try to challenge the logic of this system, insisting on a different moral orientation

from the prevailing forces. Although we will argue later in this article that caregiving

must be integrated (or in some sense reintegrated) into the training of doctors, we would

like to insist in this section that pedagogy is not enough. In fact, a critique of the reduction-

ist paradigms of medicine must be at the basis of medical practice. This is a question of both

a moral and a philosophical orientation, one that many doctors and medical students

encounter daily as they struggle to resist the business paradigms that push them to see their

patients as consumers. Those who do resist practice what we define as anti-heroism, a moral

resistance to the status quo.

Anti-heroism is the best that may be available for most of us in a world where true hero-

ism in the face of injustice may carry a price not all of us can pay. Anti-heroic actions are

ones that critique and resist the moral status quo by perturbing and disturbing our local

world. They signal disaffection and raise questions in others. They indirectly challenge the

taken-for-granted. They run against the moral grain. In place of actions that aim to change

the world, anti-heroic practices aim to create a space for alternatives where critical self-

reflection can thrive. In such a space, local protagonists can search for ways to live a moral

life in spite of the shortcomings of the local moral world. And that quest for living one’s

own moral life can be generalized as an aspiration for ethical positions that offer an

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alternative vision of what the local world might look like with respect to social justice and

integrity and other trans-local values.

Medical practice is one setting where the anti-heroic can be, and has been, realized.

W.H.R. Rivers, the early twentieth-century British anthropologist-psychiatrist, introduced

a humanistic, ethnographic form of psychotherapy into the medical care of traumatized offi-

cers during the First World War. That psychotherapy provided Sigfried Sassoon, the highly

decorated yet anti-war poet, with a protected place to come to terms with his own rebellion

against the carnage. Sassoon returned to the front without giving up his critical political

views; Rivers, in turn, became an anti-war critic, devoting the remainder of his life to poli-

tical transformation on behalf of pacifism, workers’ rights and the legitimacy of psycholo-

gical trauma as an honorable and compensable medical condition. Rivers’ anti-heroism

did not change his world, yet he opened a moral space for many others to rethink their com-

mitments and rework their practices in service of more availing ends and against the grain of

the dominant values of that era: colonialism, racism and jingoistic nationalism. In our era,

anti-heroism offers a counter to the neoliberal agenda that has put business before healing

in biomedicine, reducing the physician’s engagement with caregiving even further.

For patients and families faced with health catastrophes and the most serious chronic

medical conditions, the experience of suffering is not just a personal one, but is strongly

influenced by cultural and historical changes in the illness meanings, socialization and self

processes that …