CityReads│When A Medical Anthropologist Became A Caregiver

259

When A Medical Anthropologist Became A Caregiver

Care can offer wisdom for the art of living.

Arthur Kleinman, 2019. The soul of care: the moral education of a husband and a doctor, Penguin.

Sources:https://www.penguinrandomhouse.com/books/573438/the-soul-of-care-by-arthur-kleinman/

https://time.com/5680723/doctor-wifes-alzheimers/

https://www.washingtonpost.com/health/caregiving-for-a-sick-loved-one-can-be-stressful-harrowing-depressing--and-rewarding/2019/09/27/dbb41cf4-c918-11e9-a4f3-c081a126de70_story.html

http://thewildreed.blogspot.com/2019/10/arthur-kleinman-on-soul-of-care.html

https://book.douban.com/review/10601822/

In his new book “The Soul of Care: The Moral Education of a Husband and a Doctor,” Arthur Kleinman — a psychiatrist and anthropologist at Harvard — chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s. He describes the process of navigating a health-care system that seemed to offer plenty ofclinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones.

The Soul of Care explores the clinically important question, what is the relationship of subjectivity to moral sensibility, responsibility and practice?Following the Confucian tradition and based on his work over 50 years inChinese society, Kleinman seeks to challenge the established, largely Western understanding of both morality as well as subjectivity. Morality is located primarily in the local worlds we inhabit. It becomes embodied in the individual as a reaction (either of supportor resistance) to the values animated in the flow of social experience in those local worlds. Seen this way, the real subject of medical ethics, for example, is not abstract principles, but the local world of a clinic or a family and the relationships and inner life of the people who inhabit those worlds. Subjectivity in turn is not only about cognitive processes and emotions, but centers on the moral sensibility, responsibility and practices of the individual. The most deeply experienced moral concerns and commitments comprise what historically we have called the soul. That soul is embedded in social relations as well as the body of the person.

In caregiving, relationships, acknowledgements, affirmation, presence, and caring for memories are the moral-emotional foundation of caring acts and experience. Presence refers to the fullness of being when engaged with another or others in the acts of care: acknowledging the humanity of the other and their suffering, affirming their need for assistance and right to care, and protecting and assisting in practical physical and emotional acts of care. Presence is elicited from each of the participants in the caregiving relationship when that relationship is positive and beneficial. Even when carers are deeply burdened psychologically and economically, presence can be animated and shared.

Ethnographically it can be modeled as a gift exchange relationship between individuals in a local world who are morally entangled. Developmentally, presence is about the moral cultivation of the person. Seen this way, presence involves the cultivation and expression of deeply felt moral bonds. These in turn can be thought of as the moral-emotional core of subjectivity. Subjectivity itself is now configured as intersubjectivity. What in the past many referred to as the soul is a soul that is both embodied and interpersonal. Caregiving not onlyelicits, but potentially can transform the souls of the caregiver and the receiver of care. Kleinman illustrates these points using four sources: the research literature, his own research, his experiences as a professional carer and his own transformative experience of being a family caregiver. This volume is his testament about caregiving and why it matters most.

The book opens with a fearful and disoriented Joan, years into her decline, screaming at Kleinman, unable to recognize her husband or the home they’velived in for nearly three decades. To Kleinman, the pain of his wife’s angst is amplified by the recognition that their bond, which had deepened over a half-century, seemed to have shattered in an instant: To Joan, he was now a strange man inher room — not someone she had loved and supported her entire life.

The following are excerpts from The Soul of Care.

Joan was eight years into the destructive course of a typical early-onset Alzheimer’s disease, a horrific disorder that ravaged her, leaving her blind and with serious dementia. At that moment, she was experiencing something called Capgras Syndrome, in which patients become deluded that those close to them and their home as well are impostors. Two years later, the disease would take Joan’slife. Through her long illness, I was Joan’s primary family-carer. I had devoted my professional life as a psychiatrist and medical anthropologist to studying, teaching and practicing care for chronic conditions, including dementia. I should have been able to handle this outburst, just as I had to respond to all the other consequences of Joan’s Alzheimer’s disease, from agitation and memory loss to depression and escalating disability.

But this episode left me feeling broken and helpless. I struggled through this episode, like so many others, and endured a decade of care, driven on by my abiding love for Joan and by her own heroic efforts to keep our relationship alive and hold our family together. What I came to realize over the course of that terrible decade was that the humbling work of care rewarded me even as it sustained Joan. To be present and focused every day, every hour, every minute, gave me a central purpose in living. It was my emotional and moral education.

I have come to understand care through this experience as well as those that reflect my half century as a health care practitioner, educator and researcher. And what I have come to see, as if a veil of ignorance had been stripped away from my eyes, is that care and caregiving are undergoing a profound crisis, acrisis that can be understood as an early sign of a dangerous yet near universal transformation in human experience and social institutions. What is most human—our vulnerability, our decency, indeed our very souls—is under greatthreat.

I like to think that the decade of illness that I shared with Joan transformed meas a human being, although perhaps it’s more accurate to say that the experience capped a long process that began when I first joined my life to hers. When wefirst met, I was a striver, impatiently pursuing my academic and professional goals with little regard to those around me. Joan, on the other hand, had the soul of a carer, prioritizing relationships above all else and embracing their emotional and moral consequences. She infused light and meaning into every interaction. In the early years of our marriage, she was a sort of buffer between my exacting persona and the world, but over time, I slowly learned to take my cues from her, and engage more softly and constructively with the people in my life. When Joan’s illness brought my professional work into immediate and personal perspective, my commitment to care as a core human quality—and my recognition of the crisis now facing us—was cemented.

Caring means both worrying and actively doing something about those worries. It means learning how to take care of ourselves and our local worlds. Caregiving for the frail elderly, vulnerable children, the infirm and chronically disabled involves providing physical acts of help (bathing, feeding, exercising, sometimes just getting from one place to another), emotional insight and support, and moral solidarity.  As oftenas not the most important thing offered by a caregiver is simply their complete presence. Underlying these acts is the ethical acknowledgment and affirmation of the person receiving care, the willingness to struggle daily to endure, and ultimately, the commitment to care for memories.

Doctors spend very little time anymore in hands-on care. Oddly, for all the talk about quality of care, we have no direct measures of what makes for meaningful, transformative and moral acts of human care. Instead we routinely substitute institutional measures of efficiency—how many patients are seen, in how muchtime, with how many prescriptions or surgeries, and with outcomes measured in the narrowest ways if measured at all.

Doctors feel shackled to the computer screen, insatiable in its demand for data that it so often does nothing with, leaving them unable to turn to the patient and make a connection. Endless frustrating administrative tasks eat up their time. They are on the phone with representatives of health plans and insurance companies rather than talking with families. Slavish reliance on diagnostic technologies has led to the atrophy and loss of confidence in their own diagnostic skills. And the looming peril of lawsuits has them looking over their shoulders atevery turn. The result is widespread cynicism and burnout, especially among the more senior medical professionals.

Worse yet, we know now that contemporary medical schools actually seem to beat the caring instinct out of young prospective doctors. Medical students get the message early on that caring is far down on the list of skills they will need to demonstrate, and so their interpersonal skills actually diminish. The shocking finding reported in 2005 in the journal Academic Medicine, that beginning students are routinely better at the core activities of care than graduating students reflects a reality that no school should tolerate. This weakness is reinforced in the residency years, during which young doctors are rewarded for the mastery of highly technical skills that will later, of course, become highly lucrative. The imperatives of an ancient profession to do good in the world have been replaced by a primary focus on professional security within a bureaucracy, with good benefits and hours, and protection from litigation and institutional censure.

Patients are frustrated by the limited time physicians spend with them, by the poor quality of communication, by the complexities of negotiating a chaotic healthcare system, by costs of medications and procedures, and by the devastating sense that they are in it alone with no physicians willing or able to integrate their care. Just to get a clear diagnosis, Joan and I were shuffled through examinations by specialist after specialist, so many of whom never saw my wife as anything more than the sum of the notes and numbers on the medical chart in front of them.

My most vivid memory of the patient experience is of waiting, endlessly waiting for a precious few moments with some expert who had little or nothing to tell us, before being sent off to wait for the next expert. Nothing could be so dehumanizing and demoralizing at what was the most frightening and vulnerablemoment of our lives.

As challenging as it was to get a clear diagnosis, getting a meaningful prognosis was worse. The only thing we knew for sure was that Joan’s condition would only get worse, but no one would give us any details on what to expect or how to prepare or cope. This is an unfortunate consequence of increasing specialization in medicine. It is the nature of long-term illness that its course in non-linear and unpredictable, with peaks and valleys, periods of relative calm and stability punctuated by moments of sudden and terrifying change. Though the symptoms might be the same, each patient’s reality is different, which is what makes caregiving both exhausting and engrossing.

The decade during which I became Joan’s primary carer remade my life. I became a different person, a better person. I learned more about life, and about how to live a good life, than at any other time. Caregiving for a loved one in the grip of chronic illness made me learn to take care in how I lived and in the way I took part in my community and social world. As brutally challenging asreal care was, the experience of those years was, for me, utterly redemptive. I learned a painful but necessary wisdom that our health care system must be thoroughly remade so that care itself becomes as important as the treatment of symptoms and disease.

The meaning of care

Care is a human development process. Often in our society, boys are raised to be careless, girls to be careful. It takes a long time for adolescent and young men to learn to care about others and then become caring, and at last give care. While the social pressure and cultural expectations of women to be carers is much greater, it doesn't mean care is natural or easier for them. Women develop as carers too, Care is centered in relationships. Caregiving and receiving is a gift-sharing process in which we give and receive attention, affirmation, practical assistance, emotional support, moral solidarity, and abiding meaning that is complicated and incomplete. Care is action, practice, performance. Often it is reaction. A constant reaction to the needs of others and ourselves under difficult conditions and in different contexts. Care is accompanying someone through their experiences of alarm and injury. It is assisting, protecting, thinking ahead to prevent further difficulty.

Care is also about the vital presence – the liveliness and fullness of being – of both the caregiver and the care recipient. Acts of caring call that presence out from within us. Care does not end with death but involves actively caring for memories. I learned that caregiving entails moments of terror and panic, of self-doubt and hopelessness – but also moments of deep human connection, ofhonesty and revelation, of purpose and gratification.

I also learned how far the domain of caregiving extends beyond the boundaries of medicine. Caregiving is perhaps the most ubiquitous activity of human beings, and it can be the most demanding, at times discouraging, one. It is also the existential activity through which we most fully realize our humanity. In the humblest moments of caring – mopping a sweaty brow, changing a soiled sheet, reassuring an agitated person, kissing the cheek of a loved one at the end of life – we may embody the finest versions of ourselves. It can offer redemption to the caregiver and the person to whom he is giving care. Care can offer wisdom for the art of living.

Caregiving is hard, sometimes tedious, unglamorous work, but it resonates with emotional, moral, and even religious significance. Understanding the meanings that arise from the practical work of care may help us to meet the challenges of sustaining it, and of enduring its many trials, and also may strengthen us to face the other tests that life brings. Those challenges are increasing. I believe we are living through a dangerous time when high-quality care is seriously threatened among families, in the health professions, in our hospitals and aged care homes, and in our society at large. Amid the hardness, hate, violence, and cynicism that fuel politics today, an anti-caring ethos prevails, and undermined by funding that scarcely touches the need, care can be wrongly portrayed as softness and sentimentality. It is neither. Care is the human glue that holds together families, communities, and societies. Care offers an alternative story of how we live and who we are.

But it is being silenced and diminished in value, in the United States and around the world, sacrificed on the altar of economy and efficiency, demanding more and more of families and health care professionals with fewer and fewer resources, and threatening to displace meaning in health care. The moral language of human experience, of people's suffering and healing – the bed rock of our common experience – is being stifled, and at worst will be lost.

Related CityReads

（Click the title or enter our WeChat menu and reply number ）

CityReads ∣Notes On Cities

"CityReads", a subscription account on WeChat, 

posts our notes on city reads weekly. 

Please follow us by searching "CityReads"