“Get out! Get out!”
My wife, Joan, having just woken up, was screaming, and hitting out wildly at the stranger in her bed. She was in a panic, her body shaking with fright. “Get away from here. Get out!”
The man she perceived as a stranger was me, her husband of more than forty years. Joan was eight years into the destructive course of atypical 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’s life. 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, a crisis 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 great threat.
I like to think that the decade of illness that I shared with Joan transformed me as 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 we first 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 often as 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 much time, 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 at every 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 health care 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 vulnerable moment 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 it’s 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. Early in my career, I discovered how much more I could do for my patients by visiting them in their homes, or even by asking more probing and detailed questions, to get a sense of their daily experience. I know that if anyone had taken the time to learn about Joan’s life and our life together, they might have guided us on when and how to find home health aide, or how to rearrange our home and our life to accommodate Joan’s progressive blindness and cognitive decline. Most importantly, they could have helped us set up a care routine that allowed us to focus our energy on the things that had the most meaning and importance for us.
So what can be done?
We need a revolution in health care that makes care and caregiving—not profit and bureaucratic procedure—the priority. This means a basic transformation in values and commitments. In this re-imagined system, “efficiency” experts look for ways to substantially increase the time for patient-doctor interactions while drastically reducing waiting times, rather than focusing on record-keeping and data processing. Computer use by physicians would be banned during patient visits, through the use of medical scribes and other techniques. Time is freed up in the physician’s day to consult patients’ records before consultations, and for write-ups afterward. Home health workers who make long-term care possible are appropriately compensated and supported, while family and other carers are brought into all discussion regarding treatment plans and follow-up care, and wherever possible, are empowered to refill prescriptions and organize appointments.
Even in an institutional setting, treatment teams can be organized to bring together primary care practitioners, specialists, nurses, social workers and other health professionals around the ongoing treatment of patients requiring chronic care. Integrated interdisciplinary care can help ensure that the necessary care of the human being is not being ignored in the process of treating the disease. The obsessive bureaucracy of administrations can be curtailed and reduced so that resources-of time and energy, as well as money—go directly in the caregiving activities.
Home visits by doctors should be facilitated, in order to assess treatment in the context of the patient’s real life. Telemedicine equipment can enable better management of home care for patients with unstable conditions, and every seriously disabled patient can have access to trained home health aides to complement or substitute family carers, or at the very least to give them respite and assistance. And the medical community and society at large acknowledge the critically important work of those aides with appropriate compensation, professional status, and respect.
I would like to see medical education refocused so that students are trained in, and evaluated on, listening, hearing and affirming patients’ hopes and fears. These skills should be as important as college records and test scores among the qualifications for medical school, and should be tested and evaluated throughout a young doctor’s training. Each student must spend time providing care in the homes of the sick and disabled, and each med-school graduate should spend three to six months providing supervised care in home and primary-care settings.
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 as real 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.
Adapted from THE SOUL OF CARE by Arthur Kleinman, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2019 by Arthur Kleinman.
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Contributor: Arthur Kleinman