“Sorry?” I asked, leaning closer.
“My mouth. So dry,” she repeated. I noticed her cracked lips, the miscellaneous debris crusting around her mouth.
A cup of ice cubes sat enticingly on the table near her bed, just out of reach. I helped her sit forward. I placed one cube in her mouth. And I watched, as a smile spread across her face.
I thought, chagrined, of how, in all likelihood, I wouldn’t spend the next week sitting with patients — exploring what they want, understanding the toll that illness exacts on their lives. I’d spend it staring at screens, ordering tests, devising diagnostic plans. I wondered whether, as physicians, we focus too narrowly on the treatments we’re trained to provide instead of the more holistic care patients need — whether too often we fail to bear witness, to support families, to offer ice cubes.
Arthur Kleinman thinks so.
He describes the process of navigating a health-care system that seemed to offer plenty of clinical 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. In moving detail, Kleinman tells the story of a husband trying to honor, in the best way he could, his wife’s ultimate wish: “I will not die without dignity.”
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’ve lived 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 in her room — not someone she had loved and supported her entire life.
For many caregivers, the pain of losing a loved one’s companionship is compounded by many financial and health burdens. Family caregivers are often forced to reduce the number of hours they work and can lose hundreds of thousands of dollars in wages over their lifetimes, resulting in considerable financial strain.
The physical and mental strain, however, is often worse. Caregivers are at substantial risk for anxiety, depression and chronic disease. Research suggests that high levels of inflammation and depressive symptoms can last for years after their caregiving responsibilities have ended. One study found that compared with non-caregivers, people who experienced significant stress while caring for a disabled spouse were 63 percent more likely to die in the next four years.
Kleinman emphasizes how the daily act of caregiving took a toll on him and how he felt unsupported by the medical system. He and Joan felt they were treated as “little more than inconclusive test results and data points, rather than vulnerable people in need of support and desperate for reassurance.”
The Western model of medicine tends to understand the patient as an atomized figure, the lone sufferer of illness and disease. But patients are often embedded in a complex network of friends and family members — each of whom may play a role in the caregiving process.
There’s more that clinicians can do to recognize this reality. A first step is simply to identify the patient’s primary caregiver and list them in the medical record. This allows clinicians to more reliably explore caregivers’ unique circumstances and concerns, and ensures that confusion about health-care privacy laws doesn’t limit the loved one’s ability to engage in the patient’s medical care.
Clinicians should also help caregivers gain proficiency in the many tasks — changing catheters, dressing wounds, checking blood sugar levels — they may need to provide. Too often, we assume caregivers can perform these complicated medical tasks without taking the time to help them learn.
And all caregivers should be made aware of available community resources such as peer support groups, meal delivery services and respite programs. The Eldercare Locator is a free national service that helps caregivers find such resources, with the goal of allowing older adults to continue living at home.
For Kleinman, as for many caregivers, frustration with the health-care system was aggravated by his budding social isolation. Friends and neighbors, increasingly uncomfortable with Joan’s disabilities, began to view her as “socially dead, a nonperson”— and stopped extending invitations to social events.
Kleinman recalls one particularly painful evening when he took Joan to the opera. During the performance, she began speaking loudly, and audience members hissed complaints at them, urging them to leave. Kleinman is torn between their admonitions for silence and Joan’s thrill upon hearing the music: “Didn’t she deserve some happiness in the midst of the horror of her disease?”
Still, Kleinman’s ultimate message is a hopeful one: that the act of caring can transform both caregiver and care recipient. He emphasizes the uniqueness of each family’s situation and shuns dogma suggesting there is one proper way to cope.
He shows us how the humblest actions can also be the most profound: soothing a frightened loved one, wiping a tear, changing a soiled sheet. There are beautiful moments — even beautiful days — amid the inevitable decline.
Despite unrelenting challenges, many caregivers feel fulfilled, even enriched, by the act of caring for a loved one. Clinicians can and should work with caregivers to ease what’s burdensome and preserve what’s beautiful in caregiving.
In the end, this is the story that may offer instruction and comfort to the 40 million family caregivers in the United States, and inspiration to clinicians struggling to go beyond diagnosis and treatment — to provide care.
Dhruv Khullar (@DhruvKhullar) is a physician and an assistant professor of health-care policy and hospital medicine at Weill Cornell Medical College, and director of policy dissemination at the Physicians Foundation Center for the Study of Physician Practice and Leadership.