The day I first met Frank, I followed his daughter, Susan, up a long set of steps into a cheerful living room where her parents sat waiting. Frank used the arms of his chair to push himself to standing and, once upright, extended his hand. He was a slight man with a full white mustache, a large, flat nose, and a strong grip. Despite his good manners, I could tell my visit was his daughter’s idea.
His wife also rose, though more slowly and with a boost from Susan. Her hair stuck out from her skull, dense white and fluffy, reminding me of a dandelion, and her words emerged in the quiet, mumbled way of people with middle-stage Parkinson’s disease. I had to concentrate to catch what she was saying. Although her name was Carol, she told me to call her Cookie.
She, too, had a winning smile, though her tiny, tremulous hand felt fragile in mine.
Despite his small stature, Frank had been a skilled worker who rose to foreman and provided his children with the college education he didn’t have. He fixed everything around the house, from the dishwasher and radio to the deck and roof. Until he couldn’t. That was shortly after his stroke and several years into Cookie’s decline. A year before I met him, he’d first tried to kill himself. The subject came up when I asked about past hospitalizations. He had been so sincere during our conversation up until that point, his answers punctuated with amused and sometimes resigned smiles, that I remember being shocked when they told me about the suicide attempt and his subsequent stay on a locked psychiatric ward. There was nothing about Frank that said mental illness: he was a sane man who didn’t want to live dependent and disabled, and who had decided to take control of his situation in the best way he could, as he was accustomed to doing.
None of the family members wanted to talk about it. Susan rested her hand on his arm, her eyes bright. Frank spoke softly, alternately looking at me and staring at his lap. He hadn’t liked the unit where they’d kept him after the stroke, he said, or how they had treated him, and he really hadn’t liked the psychiatric unit. I couldn’t tell which of the identity insults of illness bothered him most, only that he had felt powerless, sad, and ashamed. That day at their house, Frank admitted to often feeling down and hopeless, although he denied suicidality. As he said he wasn’t thinking of trying to kill himself again, he looked first at Susan and then over at Cookie, glances that suggested a different truth than the one he’d put into words.
From the start, Cookie had been Frank’s perfect match, as compulsive about cleaning, cooking, and tending their home and family as he had been about providing for them. Even smaller than he, she was also more nervous and timid. Or maybe she had become that way by the time I began taking care of them. I suspect those qualities, always present, had risen to prominence as others receded. That sort of change can happen in old age, people becoming “more so” in ways both good and bad. It’s a process that resembles what happens to ears and noses over decades; not only does the cartilage in those structures keep growing throughout life, long after bones, muscles, and fat have stopped, but the skin and parts around them diminish, accentuating their enlargement. Still, as the Cavaglieri family stories would make clear in subsequent visits, in her kitchen and at her dinner table, Cookie called the shots.
Frank and Cookie had been married for sixty-five years. Once, a decade or so before I met them, their son had taken his father on a “boys’ ” trip with his own sons, a one-off family adventure that required a plane trip to another state. They were already in the wilderness a thousand miles from home, with the sun setting and the tent up, when Frank said, “I wonder if I’ll sleep. Except during World War II, I’ve never spent a night away from your mother.”
Their son laughed when he told me that story, his amusement equal parts incredulity and wonder.
Frank managed those few nights of the camping trip. But later, after Cookie’s death, he’d find it much harder to be the sole representative of a successful pair—not just because his marital other half was missing, but because so much of him was too.
* * *
Shortly before Frank and Cookie joined our housecalls practice, their “kids” had begun making arrangements for them to move to assisted living. Parkinson’s rendered Cookie stiff and slow, and a stroke had slowed and weakened Frank. Their house had stairs outside and inside, and they struggled to accomplish even the most basic of household tasks, from showers to meal preparation. For a while, Susan said, it had worked to have household help and for her or their daughter-in-law to keep them stocked with prepared meals, but eventually even that wasn’t enough. Sometimes Cookie couldn’t get out of bed. Or they couldn’t manage getting the ready-made meals warmed and onto the table. Although the key rooms of their house were on a single level, a flight of stairs separated them from the street. They were trapped, and they couldn’t afford twenty-four-hour care at home. Shortly after my first visit, they moved.
I adjusted their medications so he’d stop fainting or nearly fainting and so they’d both be able to move around better with less pain. I also arranged for physical and occupational therapy—the former to work on strength and walking, the latter to devise strategies to keep them independent in at least some tasks of daily living. Each of these geriatric interventions helped, but not nearly as much as they would have a year or several earlier, and not enough to markedly improve what bothered them most. This was partly because the facility looked nice but, as with most such places, still operated like an assembly line where the product was frail, elderly humans. But also, it seemed neither Frank and Cookie nor the therapists working with them believed that old and frail people could make significant physical gains. None of them tried as hard as they might have had they known about, or believed, the studies showing how much change is possible even in advanced old age with the correct doses15 of the right exercises. But it was also because my own geriatrics approach, though far broader than that of most other branches of medicine, was too narrowly focused on illness and disability. As their doctor, my role was management of their diseases and geriatric syndromes, but that wasn’t what they needed most. Even, or perhaps especially, once good health was no longer attainable, they needed well-being in the form of purpose, meaning, and relevant options.16 Getting those health essentials would require both a society that didn’t reduce old people to their bodies and ailments and a health care system that valued health and wellness as much as it did diseases.
When people think of old age as depressing, they are likely imagining scenarios like Frank and Cookie’s. Ditto when medical students, doctors, and other health professionals think about geriatrics.
Missing from those apprehensions are the distinctions between fixing and helping, between depressing and sad, and between the easy, comfortable moments most people prefer and those that define and give meaning to our lives. Equally absent is acknowledgment of the interplay between biological destiny and the consequences of our social constructions of old age, which include houses built with the assumption that no one lives past sixty or seventy to institutional warehouses with the thinnest veneer of hominess over the trappings of a prison or hospital.
I am telling just one side of this story here, the side that highlights the worst of old age; it’s also possible to construct analogous horror stories of childhood or adulthood. What most of us see when looking at very old people in institutions seems entirely sensible, until that person who is isolated, ignored, and warehoused is our mother or father, friend or self. Only then, too late, do we consider that our individual and societal decisions, often based on such reasonable considerations as convenience, economics, or well-intentioned efforts to keep aged people safe, have in fact created an advanced old age nobody wants.
But there is also this: in telling Frank’s story, I have done what we often do when we talk about old age, devoting thousands of words to the bad part of his long life and just a few lines to the good. In reality, over nine decades of living and three of those in old age, the proportions were just the opposite. Frank had over eighty good years, a few years that were no
t so good, and one to two years that were bad. The bad matters, and we need to make it better, but to say all of life, even all of old age, is bad is to tell a story that isn’t true.
Frank and Cookie were in their sunny one-bedroom apartment in assisted living for less than a year when she got pneumonia. We treated the infection, but she never fully recovered. Cookie became bedbound, barely ate, and developed pressure sores. We held a family meeting and decided on hospice.
In the weeks leading up to her death, Frank lay nearby, trying to keep awake at night to listen for sounds of distress. Their marital bed had disappeared. Now Cookie was in a hospital bed across from Frank’s new, single bed in their apartment’s small bedroom. He had fought this furniture arrangement, this separation of the two of them, and—like most battles at that stage of his life—he’d lost. According to medical conventions and the government’s rules for such facilities, the hospital bed was considered necessary for the safety of both Cookie and her caregivers.
When she moaned, he’d rise and try to tend her. Several times, he fell crossing the small divide between their beds. Sometimes he got himself back up. Other times he crawled to the call button and waited for an aide. “They sure don’t come running,” he told me.
In those days, the bags under his eyes nearly reached his mustache. He looked shattered. Seventy years, I kept thinking. They’d been married nearly seventy years. I hadn’t even been breathing for fifty at the time.
Cookie died, and at first, to everyone’s pleased surprise, Frank did okay. Worried about her, he hadn’t participated in many facility activities. Now he went on trips to the coast and to musicals in the beautifully appointed “great room.” He played cards twice a week, made new friends, and sat with “the boys” for meals. He enjoyed watching the children who came to perform and going to his son’s house for dinner. It wasn’t the best year of his life, but it was acceptable.
But when his hearing got worse, neither the ear doctor nor hearing aid specialists could help. He began having more heart symptoms. He had another small stroke. His thinking slowed and faltered. From that point on, things went steadily downhill. At each visit, when we were alone together, he talked about how much he wished his life would end.
Several times, I asked Susan or another family member to meet me in his room. In the presence of his family, Frank would backtrack from our conversations and deny wanting to be dead. He would tell them he loved them and that he would try harder. He would tell them it wasn’t so bad.
Even at this moment when he could no longer do so much of what had defined him, he couldn’t help but continue to be a good father, prioritizing his children’s welfare over his own. As his life became more of what he didn’t want it to be, he remained patient with all of us who were supposedly helping him, even when it was clear we couldn’t give him what he wanted most.
Frank’s fate often tops people’s list of the problems with old age. For many, it’s more terrifying than death, the version of “old” they fear and dread. In gerontology, that final stage of life before death is known as “the Fourth Age,”17 the phase when we pass “beyond any possibility of agency, human intimacy, or social exchange … [into] a hyper-reality from which there is no … return.”
A year and a half after Cookie’s death, Frank’s suffering became undeniable. By then, it was clear that nothing could be done to improve his hearing, walking, or continence, and, related but perhaps even more important, his sense of purpose. When he asked what could be done, I explained to him, as I have to so many others, that I could not kill him but we could make some changes that would at least lessen the medicalization of his life and might allow death to arrive sooner than it would if we continued with a disease-focused rather than a more person-focused approach to his care. That day, we stopped his heart medications, a step his family couldn’t imagine taking even a few months earlier. We also agreed that if he got sick, we would start hospice and morphine rather than move him to the hospital.
And still he didn’t die. For weeks, then months, nothing changed. It seemed he hadn’t needed all those medications, something I often see. But he remained chronically dying, increasingly confused and thoroughly, miserably still alive.
How universal are the factors that give life meaning? How do we decide the meaningfulness of another person’s life? What can or should we do when that meaning seems irretrievably lost? People offer a wide range of answers to those questions, from leaving it in God’s hands to passing assisted dying laws. But faith doesn’t preclude human efforts to improve the station of others, and many assistance-in-dying laws have little or no applications in the lives of the people most likely to die: the oldest among us, people like Frank. Aid-in-dying laws require a terminal disease with a six-month prognosis, good mental capacity, and the physical ability to take the lethal medication unassisted. Frank could not self-administer drugs and was increasingly confused, and his form of dying didn’t have either a single cause or a clear end point.
For his family, and for me, Frank’s life had meaning and importance right up until the end—he did eventually die, of course. But to look at it that way is to do to Frank in death what we did to him throughout his last years, which is to make it about us—the young and middle-aged and young-old—and not about him. Shouldn’t he, like the rest of us, have been able to articulate and get what he wanted? His last few years didn’t feel meaningful to him, and there was no chance he’d get back what mattered to him most.
Speak to almost anyone in their fifties, sixties, and seventies, and they can tell you about a loved one who ended up in a situation like Frank’s. It’s a tragedy and a travesty that our “modern, developed” society can’t have an honest conversation about advanced old age when a majority of us will experience it. If our beliefs and institutions gave Frank the ending we fear, it’s time to change those beliefs and institutions. We need to look at old age with compassion and creativity, to reimagine and improve it, from its early fit, functional stages to its less appealing final years. That won’t do Frank any good but it will help the rest of us—and it would have made Frank happy to know those years he felt so useless were actually changing the world.
PRESTIGE
In medicine, as in society, biases shape what and who counts. People who take care of kids, the mentally ill, the poor, or the very old are paid less—and sometimes respected less—than those who care for adults more generally. Always at the top of the power ladder are those whose focus is surgery, parts, procedures, technology, and machines. Always at the bottom are the doctors who deal with psyches, holism, complex physiological systems, so-called social issues, and long-term doctor-patient relationships. Basically, the narrower the focus, the shorter the interaction with the patient, and the more high-tech and procedural, the higher the status on the totem pole of medical specialties.
If you use physicians’ annual income by specialty18 as a marker of perceived professional status, entrenched systemic priorities emerge. To wit:
Exhibit A—All top-ranked health systems on the planet rely on primary care to keep people healthy. In the United States, ranked thirty-seventh among nations19 by the World Health Organization, we have trouble recruiting doctors to primary care, in part, perhaps, because in addition to having a broader purview, they are paid on average over one hundred thousand dollars less per year than specialists.
Exhibit B—Internists (adult doctors) are paid more than pediatricians. Orthopedists are paid more than rheumatologists. Neurosurgeons are paid more than psychiatrists.
Exhibit C—In internal medicine and pediatrics, primary care doctors complete the same residencies as hospitalists, yet the latter are paid an average of thirty thousand to fifty thousand dollars more per year. Yet ask most hospitalists if they would do primary care, and they’ll say, No way; it’s too many hours, too frustrating, too stressful, too hard.
Exhibit D—Most of the specialties at the top are procedural and majority male,20 and the more relational ones at the bottom are mostly
female. Also, urologists make more than gynecologists.
Finally, Exhibit E—geriatrics and palliative care, despite their advanced training and certification procedures, decades-old professional societies, and presence throughout the country, don’t even appear on most specialty ranking lists.
The messages embedded in the rankings are clear: High-tech care is best. Inpatient is better than outpatient. Adults matter more than kids. Stereotypically male skills are worth more than ones commonly considered stronger in females. Curing beats caring. The powerful and able-bodied matter more than the vulnerable.
These hierarchies of relative value work counter to society’s needs. They also harm patients—some of us all the time, and all of us some of the time. By preferentially directing resources and clinicians, it restricts options and access, often away from what patients need most.
Among the justifications for power, compensation, and prestige differences among medical specialties are training time and perceived difficulty—arguments with some merit. Should there be cause for someone to do some cutting and rearranging of my brain, I want that person to be highly trained and exceptionally skilled. But that would be no less true if I developed schizophrenia. Neurosurgical training is longer than psychiatry, so maybe the surgeon should have a higher salary, but I’m not convinced that brain clot or epilepsy focus removal skills are worthy of more respect than help with debilitating depression or psychosis. Similarly, can it possibly be true that it takes two to three times as much skill to read an X-ray or MRI of a two-year-old child as to figure out the cause, explain to the parents, and initiate tests and treatments of illness in the same two-year-old child? One might think so, given that the radiologist is paid two to three times more than the pediatrician, even though it is the latter who not only must put the X-ray findings in context but also do a physical exam and take a history and negotiate what will and will not be done with the worried parents and their insurance company—and, long after the billable, productivity counted visit, field their concerned calls while seeing other patients or tucking in their own two-year-olds.
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