He agreed, and I sent the researcher an e-mail.
A few weeks later, a friendly note and his slides appeared in my inbox. Most of his slides focused on molecular changes and drug targets in different dementias, particularly the rare types. His images included electron microscopy photos and PET scans of diseased brains taken from journals like Nature. It looked like a terrific talk that would bring the audience up-to-date on the current understanding of dementia biology.
For the dementia portion of my presentation, I had selected three studies from top clinical journals. One established diagnostic criteria for the dementia precursor condition known as mild cognitive impairment; the second offered guidelines for evaluation and management of driving risk in dementia; and the third was a large study of quality of life and hospitalizations in patients with late-stage disease.
I sent the continuing education course director a note, assuring him that my talk and the researcher’s had no overlap.
Science is essential for understanding and advancing medicine, but it doesn’t always have direct utility in patient care. Seeing via electron microscopy the helical filaments in the brain of a person who died from frontotemporal dementia helps doctors understand how and why that disease differs from other dementias; however, it tells them little of what they need to know to diagnose or treat patients with that condition, and does not help their caregivers manage the often socially unacceptable behaviors common in that particular dementia. By contrast, learning that the survival of patients with advanced dementia is similar to that for metastatic cancer or end-stage heart failure provides doctors with critical information about how to help patients and families with end-of-life planning and how to minimize patients’ distress and physical suffering as death nears.
The researcher’s talk reflected not just his own interests but medicine’s more generally. In the wake of their huge contributions to twentieth-century medicine, lab tests, radiologic studies, procedures, and drugs began to be viewed as the primary and, often, the only constituents of medical care. That’s problematic when it comes to diseases like dementia. Despite diagnostic advances and a handful of minimally helpful drug treatments, most of the knowledge and skills needed to take good care of patients comes from a different toolbox. The needed expertise includes helping patients manage the practical challenges and existential distress of a dementia diagnosis; techniques for communicating with people with different types and stages of cognitive impairment; the ability to recognize and manage caregiver distress; mastery of not just drugs but also less toxic and more effective social, behavioral, and environmental approaches to symptoms; and prowess in navigating the difficult terrain of life planning, family grief, conflict, and tough decision-making as the disease progresses.
A few years later, I learned I’d underestimated the researcher. His center now studies, teaches about, and provides some of those geriatrics-based approaches to dementia care while still doing cutting-edge science and neurological evaluations.
* * *
The dementias can’t currently be prevented or cured, though some of the more common types can be delayed by minimizing the same risk factors associated with heart disease, stroke, and certain cancers: regular exercise, healthy eating, avoiding obesity and cigarettes. These things are harder to do if you’re poor and lack the access, education, resources, or hopefulness about your own life to support healthy living, facts that account for at least part of the ethnic variation in prevalence. They are harder still if your community has been poor for a long time and developed traditions, including favorite foods and family activities, that are simultaneously deeply meaningful and unhealthy. Some poor health comes down to individual choices and behaviors, and some of us are better set up to succeed than others. In dementia, as in most of medicine, social inequality leads to bad health and unnecessary health care expenses.
In many ways, dementia is the prototype of the American approach to old age, and also its metaphor. When and how we talk about it, what we do and don’t understand about its impact on lives, and how we have and haven’t dealt with it both societally and medically in recent decades perfectly exemplifies our attitudes and modus operandi to the larger topic of aging. The questions so often asked about dementia apply equally well to old age itself: Who is this changed self? What is our place in and relationship to society and other people? There is an important difference between an older person who can no longer run a 10K race but who can still work a register, sit on the Supreme Court, provide afterschool grandchild care, drive for a ride-share company, be a museum docent, or run a medical center, and one who can no longer find her way home or remember his children. What’s not different is that both are human beings worthy of attention and care. The former may become the latter, and the latter was once the former. They are the future “us,” and we are the past “them.”
STANDARDS
As CEO and chief medical officer of Denver Health, Patricia Gabow transformed a large safety-net health system by introducing systematized approaches, called clinical pathways, to specific medical problems. Such pathways are among the most effective ways to take cultural biases and physician idiosyncrasies out of patient care. They encourage or compel doctors to follow standard approaches and practices by providing unambiguous goals and essential, evidence-based steps. Gabow’s pathways resulted in unprecedented health outcomes in Denver Health patients who had often received lesser care for reasons ranging from little education, low income, hunger, and skin color to mental illness, addiction, and disease burden. She was rightly proud of her work.
But when her mother—a frail ninety-four-year-old with advanced dementia—injured herself in a fall, Gabow realized the standard care she had put into place, while transformative for many patients, was not what her mother needed. It wasn’t just that Gabow feared the clinical pathways wouldn’t help her mother; she knew they would hurt her. Her mother’s designated decision-maker, she said no to a long list of procedures: a neck brace, a heart monitor, an IV, a CT scan, orthopedic surgery, and a hospital stay, but yes to sewing up a forearm gash, a splint for her mother’s multiply broken wrist, and nonoperative treatment at home for the hip fracture.
The hospital doctors were uncomfortable with this last choice, arguing that the surgery was quick and minor, but Gabow—more in her physician-daughter than physician-CEO role—saw it differently:
I pictured the intravenous line, which she would try to take out, leading to soft restraints that she would also struggle to get out of. Then sedation and a downward spiral. Every part of this would seem like torture to her—and I would have to watch this torture.12
Instead, after calling the vacationing head of orthopedics on his cell phone, Gabow and her mother went home. Within a week, her mother was walking thirty feet with a physical therapist. Not only had Gabow saved her mother’s life; she’d saved the health system approximately $156,000. It was a win-win, but only because Gabow had the knowledge, authority, and money to circumvent our usual medical and social care systems.
Gabow derived the cost-savings figure from the services that would have been unhesitatingly provided by the hospital and paid for by her mother’s insurance had Gabow not refused them. In the past, she hadn’t seen how the standards she herself had put into place did not address the needs of all patient populations. Clinical pathways assumed all patients with the same condition would benefit from the same treatment. Standards are helpful, but they almost always focus on individual diseases without considering that a person might have multiple interacting diseases, or that both disease and treatment behave and are experienced differently by the young, old, very old, and by people who are otherwise healthy, chronically ill, or dying. Equally important, as the physician-anthropologist Arthur Kleinman pointed out in The Illness Narratives, for patients of all ages, our health care system still too often treats13 diseases rather than attending to illness—the unique expression of that disease in a particular human being.
In Gabow’s mother’s case, ou
r health care system also saved money for two other notable reasons. Years before the fall, Gabow helped her mother determine and express her health and end-of-life wishes while she still could. The decisions Gabow now made on behalf of her mother reflected her mother’s values and preferences; they were as close as the older woman could come to retaining control over her own life and dignity, as well as relieving her daughter of difficult decision-making without guidance. Absent such information, Gabow might have been tempted to say yes to surgery or a host of other costly, standard procedures more likely to harm than help her ancient, frail mother. Many people err on the side of biotechnologically aggressive care, and doctors in our current medical culture rarely explain how cruel and injurious that can be or adequately present alternatives better matched to the person’s situation. Last but not least, our health system saved money because the Gabows paid out of pocket for most of the at-home care needed after the fall.
Families often assume doctors know best. But most medical professionals are the products and purveyors of a system that pays for only certain sorts of care, even when it’s more likely to prolong suffering than to restore health and even when, in report after report, most state they would not choose that care for themselves or their loved ones. Among the reasons clinicians cite for not liking to take care of old patients is the moral distress they feel when they are asked to provide futile treatments that cause significant suffering.14 People shouldn’t need to have parented a physician to get the care that suits them best in old age. But the problem goes beyond doctors.
Our current care system rarely questions the need for procedures, and unquestioningly pays for the complications they routinely cause frail old patients. It does not, however, reimburse for the care that might allow those same patients to return home safely and comfortably, as Gabow’s mother did. The child of another patient with similar health problems would have been forced to choose between hospitalization and a downward spiral for her mother, or her own loss of job and income. Gabow’s calculation of $156,000—a prolonged hospital stay, subsequent nursing home stay, and readmissions—is the rule, not the exception, for most people at some point in old age.
A common argument against such initiatives is that most people can’t afford the sort of care Gabow’s mother received. Such arguments forget that we are already paying for extremely expensive care that doesn’t help.
OTHER
Since most of us reach old age, you might think old people would engender fewer “Not me” and “Not my problem” reactions than many categories defining our social identities. After all, old age is not like gender or race. For the most part, people remain what they were at birth. Nor is it quite like cancer or heart disease: although many people get those diseases, not everyone does, and you don’t know which camp you’ll be in until you get one. But unless you die, you will become old. Beliefs and appearance, nationality and religion, also differ from old age. Although you might not make changes in your politics or hairstyle, throughout life you have that option. Perversely, then, it seems likely that part of the reason why we band together so universally and effectively against old age is precisely because it’s indiscriminate. It doesn’t matter who you are.
Early childhood aside, youth comes with increasing strength, social, and sexual power, each defined in ways that make them inevitably temporary and, therefore, all the more precious. This wasn’t always the case. In Puritan America, older people represented the highest in human achievement and were duly venerated. Nowadays, the public celebration of young models, actors, and athletes exceeds the rewards and accolades offered everyone else, even the billionaire techies who now shape so much of our daily lives. But there may be an even more elemental explanation for our othering of old age. By definition, social identity is relational. Human beings figure out who they are by comparing themselves with others. As Simone de Beauvoir explained, “Otherness is a fundamental category of human thought. Thus it is that no group ever sets itself up as the One without at once setting up the Other over against itself.”
Spending our first many decades with old as Other has consequences. The octogenarian poet turned essayist Donald Hall offered one of the best articulations of old age’s essential dilemma:
When we turn eighty, we understand that we are extraterrestrial. If we forget for a moment that we are old, we are reminded when we try to stand up, or when we encounter someone young, who appears to observe green skin, extra heads and protuberances. People’s response to our separateness can be callous, can be goodhearted, and is always condescending.
Clearly, being old comes with real challenges, but those challenges are only part of what makes old age difficult. The critical ingredient is our response to it. The biological facts of life alone don’t shape our experience of old age, or Puritan elders wouldn’t have received the best seats in houses of worship. The personal, societal, and cultural constructs we build around our biology are no less important in shaping our old age. We age at the intersection of nature and nurture.
When it comes to age, othering is not confined to old people. It begins early, happens often, and is usually but not always negative. As Sarah Manguso says in Ongoingness, “From the point of view of a child, a mother is a fixed entity, a monolith, not a changing, evolving human organism [that is] similar, in many ways, to a young person.” Her comment can be read as a limitation of the young brain, but also represents our earliest sense of otherness and our first almost instinctive reduction of the other to something distant and abstract. Across history and geography, we humans have done this to those who differ from us in tribe, nationality, race, religion, gender, sexuality, ability, politics, class, caste, priorities, company, industry, region, dress, comportment, and so much more. The individual other is seen not as a unique human being but as a group representative, and the group is not so much made up of real human beings as it is a notion—simplified, singular, and essentially different. The phenomenon includes traits we can control, ones we can’t, and, more often than I would have ever expected, the life stages we don’t currently inhabit. If younger people are inclined to call someone “over the hill,” it seems the older among us are equally liable to express exasperation about “kids these days.”
Given the ubiquity of othering, our tendency toward it seems part of being human. And like many of our other unjust, unkind, and self-defeating social tendencies, recognizing it is the necessary first step toward a more thoughtful approach, though no guarantee of such moral progress. When it comes to aging, that different approach should somehow account for the fact that while much of who we are doesn’t change over time, our age group does. On the Today show, at age seventy, Cher said, “I look in the mirror and I see this old lady staring back at me. And I have no idea how she got there!”
In discussing race, Claudia Rankine has talked of how, in trying to account for the world around them, people often want “to write about the other without investigating their relationship to the other, and that, I think, is what became or becomes problematic.” She points out that until we understand that much of whiteness and blackness—and, I would add, much of youth and old age—is fabricated, we end up “resorting to stereotypes that are made by the culture.” Even about ourselves.
Said the poet Molly McCully Brown, who was born with cerebral palsy and has spent much of her life in a wheelchair, “Language has so much to do with how we explain ourselves to ourselves and to others … I’m grateful to have had these scientific and concrete explanations for why and how my body works and my brain works, or doesn’t work, the way that it does. But I will say that it does shape your sense of yourself. You know, the earliest language I had for my body was a list of the things that were wrong15 with it and a list of the things that people were doing to make it, quote unquote, better. And I think that does really shape your sense of who you are.”
Othering and stereotypes allay our anxieties about how little in the world and even in our own lives we can control. They give us shortcuts “embedded
in larger archetypes, ideals, or myths that societies use to infuse experience with shared meaning and coherence”16 by which to understand ourselves, others, and the world. They allow us to see a type or trope, to look rather than to notice—a critical distinction. When we look at something, we merely direct our gaze. When we notice it, it’s known to us in an intimate and particular way. Thus, in the late nineteenth century, when Americans began viewing the body as a machine and not a divine gift, their sense of old age changed too, in ways that encouraged looking over noticing. Having previously seen old people as closer to God, Americans now saw them through an industrial lens, lacking function and efficiency. Old age began to seem “less than” compared with youth,17 and aging came to be associated with decline and obsolescence—conditions people distance themselves from even today, invoking that same singularly mechanistic definition of human worth.
5. TWEEN
NORMAL
According to our medical school doctor-professors, we would not be able to recognize and understand disorders unless we knew what normal looked like. Normal, we learned, only days into the first year of medical school, was a healthy 70 kg male. Although no one said so, this “Norm” fellow was also obviously white, heterosexual, and, in the spirit of Goldilocks’s three bears, neither too young nor too old. The transmission of those last three traits was not explicit, but they were easily deduced. With the exception of human embryology and certain conditions related to youth or old age, our textbooks focused almost exclusively on adults.
In case studies, on the rare occasions when Norm didn’t have those “basic,” “normal,” “healthy” traits, he always had a pathology that tipped us off to his demographic deviation, conditions such as pregnancy, sickle cell anemia, AIDS, or stroke. In those pre-obesity days, 70 kg Norm was never a child. Kids were a different species that we would learn about later.
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