For my mother
and
for Jane
BY THE SAME AUTHOR
A History of the Present Illness: Stories
Old age will only be respected if it fights for itself, maintains its rights … and asserts control over its own to its last breath.
—CICERO
CONTENTS
Conception
Author’s note
Birth
1. Life
Childhood
2. Infant
MEMORIES · LESSONS
3. Toddler
HISTORY · SICK · ASSUMPTIONS
4. Child
HOUSES · RESURRECTION · CONFUSION · STANDARDS · OTHER
5. Tween
NORMAL · DIFFERENT
6. Teen
EVOLUTION · PERVERSIONS · REJUVENATION · GAPS · CHOICES
Adulthood
7. Young Adult
TRAUMA · MODERN · INDOCTRINATION · MISTAKES · COMPETENCE · SHAME · BIAS
8. Adult
OBLIVIOUS · LANGUAGE · VOCATION · DISTANCE · VALUES · TRUTH · BIOLOGY · ADVOCACY · OUTSOURCED · ZEALOT
9. Middle-aged
STAGES · HELP · PRESTIGE · COMPLEXITY · COMBUSTION · SEXY · DISILLUSIONMENT · PRIORITIES · SYMPATHY
10. Senior
AGES · PATHOLOGY · COMMUNICATION · FREEDOM · BACKSTORY · LONGEVITY · CHILDPROOF · RECLAMATION
Elderhood
11. Old
EXCEPTIONAL · FUTURE · DISTRESS · WORTH · BELOVED · PLACES · COMFORT · TECH · MEANING · IMAGINATION · BODIES · CLASSIFICATION
12. Elderly
INVISIBILITY · DUALITY · CARE · EDUCATION · RESILIENCE · ATTITUDE · DESIGN · HEALTH · PERSPECTIVE
13. Aged
TIME · NATURE · HUMAN · CONSEQUENCES · ACCEPTANCE
Death
14. Stories
Coda
Opportunity
Acknowledgments
Notes
Bibliography
Index
A Note on the Author
CONCEPTION
The aging body is never just a body1 subjected to the imperatives of cellular and organic decline, for as it moves through life it is continuously being inscribed and reinscribed with cultural meanings.
—Mike Featherstone and Andrew Wernick
AUTHOR’S NOTE
This began as an old age book, and then became more than that, including a book about medicine and what it means to be a human being. Its evolution surprised me, as a doctor and as an aging person. It turned into something at once conventional and countercultural, fact- and story-based, affectionate and opinionated, part battle cry and part lament, a verbal potpourri of joy, wonder, frustration, outrage, and hope about old age, medicine, and American life.
The stories in this book are true to the best of my recollection. Hearing about the same crisis from a doctor’s perspective or a patient’s, and from a nurse’s or administrator’s or family member’s, the same events can sound unrelated. Memory is flawed, malleable, and significant. Perspective depends on where you’re standing and who you are, on context, role, attitude, and values.
Given how much variation in story occurs in the immediate aftermath of an event, it can only be more so after time passes. I have done my best to be both accurate and true to my own thoughts and feelings. I have changed patient names throughout the book and often avoided mention of colleagues’ or friends’ names. Where I lacked a patient’s or family’s permission to tell their story, I have changed select telling details. Those measures were taken not only in keeping with core tenets of medicine and the stipulations of federal health privacy laws but also out of profound gratitude for the many people who entrusted me with their well-being and in so doing taught me about what old age is, what it should be, and what it could be.
This book also owes a substantial debt to many scientists, scholars, and writers, past and present. These powerful thinkers have created an enormous body of work on old age that should have far more influence on our aging lives and policies. One of my great hopes for this book is that it leads readers to the work of historians like Thomas Cole and Pat Thane; anthropologists, psychologists, and sociologists like Sharon Kaufman, Becca Levy, and Carroll Estes; physicians like Robert Butler, Bill Thomas, and Muriel Gillick; and more scientists and writers than I can list but whose work appears in these pages or in the notes and bibliography at the end of the book.
There’s just one more thing you need to know before turning the page or swiping to the next screen: this book doesn’t always walk a straight line from here to there. It dances—or so I hope.
BIRTH
Our humanity is our burden, our life; we need not battle for it; we need only to do what is infinitely more difficult—that is, accept it.
—James Baldwin
1. LIFE
Like many doctors, I went into medicine because I wanted to help people. And like many medical students, I quickly discovered that medical education is more about chemical structures and biology, diseases and organs, than about humanity and healing.
Midway through my first year, I knew every dean and had a collection of catalogs to other graduate programs: public health and medical anthropology, English, policy, and psychology. This wasn’t entirely surprising; as a history major who’d chosen my undergraduate college for its lack of math or science requirements, I was an unlikely medical student. But I believed medicine would allow me to make a difference in people’s lives in ways those other fields might not. Still, for two years I kept the glossy booklets hidden in my dorm room, and late at night I pored over their disparate course offerings with the zeal of a kid set free in a candy shop. My secret catalogs provided glimpses of a worldview absent from my medical textbooks and the lectures I attended. Here were courses and professions that acknowledged the particularity, complexity, and ambiguity of human lives without reducing them to disembodied cells, parts, and processes.
In our third year, my class entered the hospital: a gauntlet of challenges and humiliations. It sometimes seemed as if the frequent changes in place, people, and specialty had been designed to keep us anxious and off-balance. We learned to work without sleeping, eating, or urinating, without fresh air or clean clothes or feelings of horror or disgust, without tears or time off. It was brutal, and yet, for me, so much better than the two years before. At last my days included learning about actual people with stories no less seductive or meaningful than those in my favorite novels. My hospital work gave me some of the deep human understanding that great literature provides and combined it with opportunities to be useful to people in need. Once I began taking care of patients, medicine became exactly what I’d hoped for when I chose it over all those other fields that more inherently interested me and for which I seemed more naturally suited. I returned home each night feeling not only that my time had been well spent but also that my life mattered in a larger way, even if my contribution to the larger world was itself small. It was a wonderful feeling.
Nearly thirty years later, I still get that pleasure from being a doctor. I also now know that medicine routinely undermines its mission by dismissing the sorts of knowledge I looked for in those course catalogs. So many parts of our complicated human lives don’t easily lend themselves to measurement or experimentation. Although science provides invaluable information, and technology can be transformative, both are beholden to the interests and beliefs of the relatively few humans who wield them, and neither is well suited to addressing critical aspects of human life, from individuality to suffering to wellness. This is especially true in the years after a person turns sixty, the ages of the patients I care for as a geriatrician. That may be why, though I thought I was working for them, my patients ended up tea
ching me what questions really matter as we age and how people can increase their chances of living well and meaningfully throughout their lives.
On a foggy morning in 2015, I arrived at the University of California, Berkeley, for an appointment with Professor Guy Micco. I had heard about an exercise he did every fall with his new medical students, and I wanted to see it for myself.
Standing at the front of a cramped classroom, Micco asked a group of sixteen medical students to put down the first words that came to mind when he used the word old in reference to a person.
“Don’t filter,” he said. “Just write.”
With his thick white mustache and ring of flyaway hair, Micco bore a vague resemblance to Albert Einstein, an effect compounded over the next two hours by his wide-ranging curiosity and distractibility.
The young men and women around the single large table were first-year students in a joint medicine–public health graduate program that describes its matriculates as “passionately dedicated to improving the world’s health.” They ranged in age from early to middle twenties, and their résumés attested to extraordinarily idealistic good intentions.
The students began scribbling on the scratch paper Micco provided so he could collect responses and assess trends over time. When a minute elapsed, he told them to stop, then repeated his instructions, but this time with the word elder.
A few students shook their heads—they knew they were being manipulated.
Micco had been doing this exercise with his students for years. The faces in the room changed, but their responses to the two prompts did not. There were no trends reflecting shifts in how his students thought and felt about old age. Not yet anyway.
He wasn’t surprised when the most common associations with the word old included wrinkled, bent over, slow moving, bald, and white hair. (“Sorry, Guy,” a student once said to him without irony.) Many also wrote weak, fragile, feeble, frail, or sick. A sizable minority put down a variation of grandparent, and several listed their mothers, though generally the parents of medical students range in age from late forties to early sixties, years most people consider part of middle age. Some used words like wisdom, but more chose sad, pejorative, stubborn, and lonely. One wrote, “smelling of mothballs and stale smoke.”
For elder, the list looked different. By far the most common word was wise. Other responses were respect, leader, experience, power, money, and knowledge.
Micco’s students were in their first months of a process that would take years. Over their four years in medical school and three to ten years of residency and fellowship training, doctors in training are taught that human beings come in two age categories that matter: children and adults. After required classes and rotations elucidating differences in physiology, social behaviors, and health needs between those two age groups, they choose whether to work in children’s hospitals or adult hospitals, and as pediatric specialists or adult specialists. If they happen to notice that older adults make up 16 percent of the population but over 40 percent of hospitalized adults,1 or that patients over sixty-five are the group most likely to be harmed by medical care, that knowledge will be tempered not only by medicine’s predilections for saves and cures but also by comments from their teachers and mentors such as “Unless you really like changing adult diapers, don’t waste your time” learning geriatrics.
Micco doesn’t do this exercise to convince his students that old people are worthy of their time and attention as doctors. He knows he can’t win that battle. The problem, he told me one sunny winter morning a few months later when I met him for coffee, isn’t the students’ youth or inexperience. He has given hospital colleagues and friends with jobs that have nothing to do with medicine the same prompts and has been told the same words, even when those doctors and nurses and friends themselves qualify as old. His feeling is that the word old “is lost. Gone. Too loaded with negativity to be used for people anymore.”
Micco pulled a pen from his pocket and slid a paper napkin into the space between us on the table. He drew a basic graph. “Here’s how most people see old age.”
“What’s the other axis?” I asked. In other words, what did people think dropped so relentlessly from youth through old age?
Micco stared at me. “Anything,” he said. “Everything.”
I knew he was right. Although this view of aging is no more than very partially accurate, everyone believes it, including old people. Micco’s idealistic students and caring friends and colleagues define old with negatives because that is our culture’s prevailing view. At this point in history, it’s also the prevailing view on the planet. But of course this singular negative vision of old age doesn’t tell the whole story. They write positives in response to old’s synonym elder, because those affirmative attributes are also true. This disconnect suggests they—and the rest of us—are missing something when we think about old age. At the very least, we are losing an opportunity to look at the final third of life with the same concern, curiosity, creativity, and rigor as we view the first two-thirds.
In the months leading up to my meeting with Micco, like many doctors these days, I’d sometimes found myself feeling furious, hurt, and helpless. I obsessed about the forces and people working to undermine patients, doctors, and our health care system generally. In the twentieth century, American medicine became more interested in cosmetics and catastrophes than in promoting and preserving human health and well-being. In the twenty-first century, it worships machines, genes, neurons, hearts, and tumors, but cares little about sanity, walking, eating, frailty, or suffering. It values adults over the young and old, and hospitals and intensive care units over homes and clinics. It prioritizes treatment over prevention, parts over wholes, fixing over caring, averages over individuals, and the new over the proven.
Working as a geriatrician in such a system, I have had to wage daily, often fruitless battles against these structural forces to get my patients what they needed. In such a system, what was most helpful to the people I cared for (as a doctor) and about (as a human being) was neither billable (which mattered to my bosses and institution) nor part of my recognized workday (which mattered to me). My patients, whether old or ancient, healthy or sick, hale or frail, could easily get dialysis, surgeries that fixed a damaged part but destroyed their lives, months of fruitless chemotherapy, long stays in intensive care units, the latest high-tech scans, and all sorts of wildly expensive drugs of no proven benefit in their age group or state of health.
What most of them could not get were the sorts of things that would have made them more comfortable, more functional, healthier, and happier—things like hearing aids, enough time with their doctor, or exercise classes that would help treat many of their chronic diseases while increasing their chances of remaining independent. Nor could they get two of medical care’s most essential elements: scientific data about the pros and cons of the care they received, or being treated as a human being worthy of resources and concern.
Questioning the system’s priorities, tools, and structures is verboten in medicine. Someone who questions is seen as being a complainer or bad team player. For years I’d either squelched my concerns or been reprimanded for raising questions I felt were essential to good patient care and a more compassionate and effective health system. But in 2015 I’d begun having health problems myself, including vision loss, anxiety, and arthritis, that were worrisome in both practical and existential ways. These changes brought me face-to-face with the likelihood of ongoing discomfort and disability at a far earlier age than I’d expected. As I adjusted to my new reality, my ability to understand how medicine fit into our larger social, cultural, economic, and political worlds became more acute. Suddenly, still mostly healthy but with chronic challenges as well, I found myself positioned between youth and old age in a way that gave me a panoramic view of life.
It was then that I saw what had been right in front of me my entire career: that the experiences of older people in our health care system are indicative of
how current medical care is broken for all of us. We have created a society where we do everything possible to stay alive yet dread being old, a culture that discards people who don’t fit the latest human “product specifications,” and a health care system in which the work of medicine is often incompatible with both care and health.
Over two thousand years ago, Aristotle defined a whole as “that which has a beginning, a middle, and an end.” He showed that in three-act dramas each part contains multiple scenes and serves a unique purpose. Most human lives follow a similar progression, from setup through complications to conclusion. Until recently in human history, people’s individual dramas often ended early in the first act and certainly before the curtain fell on what we now consider Act II. The average life span was thirty to forty years, with childbirth, accidents, and infections routinely cutting lives short. These days, average longevity has doubled. With so much more time, each act contains more scenes, and most of us make it to Act III. Now, alongside childhood and adulthood, the vast majority of us can also expect a third act, or elderhood, that begins at sixty or seventy and lasts for decades. This third act is not a repeat of the first or second. More often, it is in life what it is in drama: the site of our story’s climax, denouement, and resolution.
Those last two scare us. We desperately want our elderhood to be long, meaningful, and satisfying, yet most of us refuse to approach it with the same shameless ambition we reflexively accord childhood and adulthood. For the first years of my career, I thought I understood old age and how to create a comfortable, meaningful Act III for my patients. But once my parents entered their eighties and I turned fifty, I realized I had been mistaken. I found myself making all the same sorts of cracks and feeling all the same feelings about aging as everyone else.
Up until that point, I had believed that geriatrics, with its specialized tools and knowledge, had all the answers about old age. But if geriatrics adequately addressed old age, wouldn’t the rest of medicine and everyone else have adopted our philosophy and strategies? Clearly, geriatrics was to elderhood what we doctors call “necessary but not sufficient,” and I began to wonder what I was missing.
Elderhood Page 1