Elderhood

by Louise Aronson

  In 1940, when Nascher listed geriatrics on a questionnaire, he was told it wasn’t a recognized specialty. Today, when I go to the pull-down menus on websites asking for my specialty, geriatrics is often not one of the selections, a reality analogous to the one experienced by many older job seekers who try to enter their birth year only to find the options begin years or decades after they were born. Essentially, geriatrics is to medicine as old age is to society. This tends to bother geriatricians less than you’d imagine, perhaps because we know we are firmly planted on a moral high ground. As the British geriatrician Trevor Howell explained, geriatrics is “a reaction against the belief20 that after sixty a patient is too old to be medically interesting or therapeutically rewarding.”

  Nearly twenty-five years after my “Aha!” moment in Los Angeles, medical training and care include more of the lessons I learned at that conference—but not many more. This has set up a vicious cycle wherein geriatricians focus on the oldest, frailest, and most neglected old people, an approach that makes the specialty seem narrow compared to pediatrics or adult medicine, and that self-imposed restriction in turn makes geriatrics easier to dismiss. As a result, few doctors know much about aging, and it’s likely that medical care harms and kills21 old people in ways and numbers far beyond what gets reported. After all, people are rarely surprised when a sick old person dies.

  DISTANCE

  The urgent e-mail arrived at three P.M. on a Tuesday from a former high school classmate I hadn’t heard from in decades. Allan’s eighty-one-year-old mother had been hospitalized and his father was falling apart. His parents were still in San Francisco, though he had long since moved to L.A., where he had a full life that included a high-pressure career, a wife, and two kids. His younger sister lived across the country. Despite his Stanford education and professional success, Internet searches and a call to his parents’ primary care physician, Allen had no idea how to contend with the fact that his parents’ living situation made no sense, his mother’s medical care appeared to be doing more harm than good, and there was clearly something very wrong with his father as well.

  Regularly, e-mails like this one go out on our LISTSERV: “Anyone know a geriatrician in El Paso, Boise, Iowa City, Athens, Schenectady, Santa Rosa …” These queries come from friends, relatives, acquaintances met fleetingly, total strangers who find us on the Internet, and colleagues in other specialties. At parties, conferences, schools, and gyms, people say, “Can I ask you about my mother/father/husband/sister/self?” They come from everyone and everywhere, because most people grow old, and no one can easily and reliably get themselves the help and care needed for their aging parents, partners, spouses, or friends.

  Allan’s experience is the norm. After developing a relatively minor and treatable new problem, his mother had been given a dose of a drug suitable for a middle-aged woman. The side effects landed her in the hospital, where other adverse events soon followed: an infected IV site, a nighttime fall, and a broken arm. Meanwhile, with his mother hospitalized, his father’s dementia, undiagnosed for years despite frequent medical care, was unmasked. Allan’s mother had been compensating. Her husband did well enough if they kept to a routine, and she didn’t want to bother or worry her busy children.

  Allan had noticed that his father, Carl, was less sharp than before but figured it was a normal part of aging. He assumed that had there been a real problem, there would be a diagnosis, a variant of his mother’s assumption that their doctor would have given her husband an official diagnosis if there was something to be done about it. Neither knew that many doctors count only drugs, surgery, procedures, and rehabilitative therapies as treatment. That overnarrow conception of care deprives people of useful, sometimes critical therapeutics—from food and physical therapy to symptom management and trained caregivers. Current dementia medications at best temporarily stall illness progression in some patients, while those other so-called less medical types of care help everyone. Not having a diagnosis meant Allan’s parents had not accessed the many strategies and resources available to maximize Carl’s independence, safety, and enjoyment of life. Carl also lost the chance to do certain things while he still could, from a much-anticipated Alaska trip with his grandchildren to reevaluating his financial and living situations to ensure his care didn’t threaten his wife’s health or leave her without resources for her own needs as she aged. It also meant their family didn’t have the opportunity to plan ahead for crises like the one in which they now found themselves.

  Over several days, Allan and I exchanged long e-mails. I told him what questions to ask the hospital staff about his mother and which assisted living facilities might meet his parents’ needs, and sent him links to resources on dementia, falls, caregiving, and financial planning. We also squeezed his parents into our geriatrics practice. They moved a short while later, and their new community provided them with both the practical support they needed and a new version of the active social life they’d always enjoyed. Although they would have preferred to stay in their house, the entire family was relieved by the safer living situation and less harmful medical care. But most people don’t know a geriatrician and can’t afford high-end assisted living. Wealth and personal connections should not be required for older adults and their families to get needed care.

  Yolanda had three daughters all with names that began with the letter C. I saw Cinnamon only once. I interacted with Charrdannay, the out-of-state daughter, regularly by phone, and never heard from Candy, the third, who lived a few hours away, though Charrdannay made clear that she and Candy were in close touch. After a while, I suspected the sisters might have been doing something that’s incredibly helpful to a busy doctor: having one point person as liaison between the family and the medical team.

  A week earlier, the visiting nurse who had referred Yolanda to our housecalls clinic called to ask if Yolanda could be moved up our waitlist. After her first visit, the nurse had reported Yolanda’s case to Adult Protective Services (APS), but apparently, with “one daughter present,” Yolanda had denied any problems. Since APS, unlike child protective services, cannot intervene against a patient’s wishes in California, that was the end of that. “I know they’re overworked,” the nurse told me, “but you have to wonder how hard he really tried.”

  My GPS took me to a public housing complex I knew well from runs and dog walks. It was near a park in a neighborhood of Arts and Crafts, tract, and postmodern homes. I rang the bell and nothing happened. I rang again and didn’t hear a chime, so I knocked. Cinnamon opened the door. She had smooth skin and dark depressions under her eyes. Cinnamon didn’t say hello or introduce herself, just pointed down a narrow hallway and, with a twist of her wrist, around the corner.

  On the doorstep, I already noticed the stench. Inside, it was worse. I didn’t need to be told where my patient was; I followed my nose.

  Cinnamon barely budged, and I had to turn sideways to pass her. There was a tiny kitchen on the right, a larger room ahead with a couch, TV, and purple cloths hanging over the windows.

  I sensed Cinnamon watching as I made my way through the lavender darkness of what had to be the living room, trying to scan for any clinically useful information while pretending not to. Walking down a second, shorter hallway, I passed a bathroom. Good, I thought, it’s not far from the bedroom.

  Yolanda’s room was square with white walls and very bright. I took in the absent shades, the two single beds, the boxes of medical supplies on the windowsills, and the older woman in the bed on the left, greeting me with a broad, denture-white smile.

  We shook hands. She apologized for not getting up. I noticed her filthy, stained covers, her mussed, matted hair and the places she had obviously and unsuccessfully tried to tame it. I noticed, too, the wound supplies and the pill bottles and the fast-food wrappers and the smudged, empty water glass. There was no pillbox to organize her medications and no pink Advanced Directive sign on the wall, although the referral diagnosis was widely metastatic cancer, so knowing he
r preferences would be essential sometime soon and she’d be unlikely to be able to communicate them herself when her body shut down. Finally, I noticed Cinnamon leaning against the wall just outside the bedroom door.

  I pretended not to see any of this. I explained that I was the visiting doctor, we had to fill out routine paperwork, and I needed to ask a few routine questions. I did not say most of what I usually say at the outset of a new patient visit in order to make clear that my care won’t be restricted to diseases, but kept our conversation boring and standard until I heard the front door slam with Cinnamon’s departure.

  On the phone later that day, Charrdannay would tell me that Cinnamon took their mother’s Social Security money and used it to buy cigarettes and drugs. Charrdannay said she was very worried about her mother, but she lived across the country, had a full-time job and three kids, and her husband was posted overseas. Candy was closer, but her husband was dying and she was overwhelmed. Neither of them could get away, and their sister could not be trusted.

  Once I felt certain Cinnamon was gone, I asked Yolanda what bothered her most. “The diapers,” she said.

  I waited. From the smell in the apartment, I had a guess about why they posed a problem for her, but I had learned the hard way not to make assumptions. Different people are bothered in different ways by adult diapers, with complaints that range from the purely physical to the existential.

  “They don’t last the way they should,” she said.

  I asked to see one, looking over my right shoulder toward the boxes stacked on the windowsill. No diapers. Yolanda lifted her covers to reveal a deeply yellowed and fully soaked diaper. The sheets were also wet and stained. It appeared she’d been wearing the same diaper for at least two days.

  “Cin might bring some new ones when she comes back,” she said.

  “Is that what she went out for?”

  She shook her head. “I asked but usually she buy cigarettes instead.”

  I tried to keep my expression neutral while internally debating whether it was better to show my shock, horror, and sympathy or to act nonchalant in hopes of minimizing Yolanda’s shame and allowing her to keep protecting her daughter. I felt confident that she would prioritize her motherly instincts over her own well-being.

  Sometimes on a home visit, I move through a complete history and physical with relative ease. Other times, one issue takes precedence—shortness of breath, for example, or a stroke, a broken bone, an infected wound or high fever or a blood pressure that’s too high or too low. And sometimes I think I’ve found one pressing issue only to realize there are several. Almost always in that latter circumstance, the problems are only partly “medical” in the narrow, traditional way my profession defines that term.

  During the hour I spent with her that day, Yolanda often smiled and laughed, although she had multiple medical problems, including metastatic breast cancer, open chest wounds where the tumor had grown up through the skin, dangerously high blood pressure, pressure ulcers on her sacrum and hips from lying in bed, incontinence (she was too weak to walk to the bathroom), and significant weight loss. Such “medical” issues can rarely, if ever, be entirely separated from their social, political, economic, and cultural contexts.

  Yolanda was what we call “dual eligible,” a patient with both Medicaid and Medicare. She required those social supports because, despite working six or seven days a week for nearly fifty years, she remained poor. She had received a high school diploma but little education in her native Alabama, and the only sorts of jobs open to her as a black woman in the mid-twentieth century paid little, with no benefits. These new benefits didn’t solve all her problems, but they did provide medical care, medications, and supplies. Because she had Medicaid, however, only some doctors would treat her. And because our insurance systems reimburse generously for chemotherapy, little for conversations of patient values and goals and wishes for end-of-life care, and nothing for the time a doctor spends figuring out how to get diapers and a commode for his patient with end-stage cancer and working to sort out her thorny family challenges, Yolanda had been getting regular, apparently useless chemo from a local doctor, but nothing that might have improved the weeks to months that remained of her life.

  I told Yolanda Medicaid would pay for diapers and I could arrange to have them delivered. She looked at me as if I’d said something she didn’t quite understand or that might be a joke. “Really?” she said in a soft voice. “Really,” I answered, and she laughed with surprised pleasure.

  We moved on to the rest of her physical exam and “complaints”—the official medical word for issues a patient wants to discuss with her or his doctor. The wounds were bad, and it seemed unlikely we could count on Cinnamon to care for them twice a day. Yolanda needed different treatment, something a visiting nurse could do a few times a week.

  Before I left, I told Yolanda the home care nurse and I would be taking care of her together and that at first we would be checking in several times a week to get her medication and wounds sorted.

  She wasn’t actively dying, but she was at the stage where anything could happen. I needed to know whether she wanted to go to the hospital if she got sick or wanted to stay home, and whether she understood all that hospice offered and felt ready for it. Given her circumstances, there was also a question of whether she wanted to stay in her apartment as she got weaker and sicker or move somewhere else for skilled nursing or hospice care. I was reluctant to push her on the day we met and with her lying in a cold, wet diaper. In her place, that miserable reality might well influence my choices. I wanted Yolanda to have a chance to think through her options while physically comfortable.

  She took my hand. “Thank you, baby,” she said. “You come back anytime.”

  When I got back to the office that afternoon, our coordinator said Yolanda’s daughter had called. That surprised me until I punched in the numbers and Charrdannay answered what was clearly her office line.

  “It’s worse than we thought,” she said after I described my visit. Still, she had given thought to what her mother might want and not want as her death approached. Her take on things seemed just right, given the inevitable.

  “Have you discussed it with her?” I asked. In my schoolgirl days, I would have crossed my fingers.

  “Not a lot.”

  Darn. “Would you?” I was tempted to hold my breath.

  “Yes. Of course. I’ll try, anyway …”

  We talked about my plans for her mother’s care. “If you want to see her—” I began, toward what seemed like the end of our conversation.

  Once again, our minds had gone the same direction. “I was just thinking … maybe I could ask a friend to take the kids, come out there for a day or two. I’ll leave a message if I can make it work. Also, we have some savings here. It’s not a lot, but I talked to my husband. If it would help my mother, I can send it. You just tell me where.”

  When asked the recipe for a good old age, I often give a list: good genes, good luck, enough money, and one good kid, usually a daughter.

  At a Living Well, Dying Well meeting of the Hastings Center bioethics research institute, Joanne Lynn, a leading geriatrician, old age researcher, and aging-policy advocate, said something similar: “And in our current system … unless you’ve got three daughters or daughters-in-law, you should count on being an old person in a nursing home.”22 In that same talk, she offered a reason for why we are collectively doing so poorly: we have a system that was built fifty years ago for a time when we “got sick and died—all in one sentence and all in a few days or weeks.” Things have changed. Today, people die in old age from chronic illness after being disabled for an average of two to four years, and without any reliable caregiving system.

  VALUES

  When I tell someone what I do for a living, they usually have one of two reactions. Either their face contorts as if they’d just smelled something foul, or they offer compliments about my selfless dedication to an important cause. Those in the former ca
mp usually hurriedly change the subject; many in the latter group tell me, either outright or by implication via excessive praise and admiration, that I’m a saint. These apparently opposite responses are actually the same. Both imply that what I’m doing is something no one in her right mind would do.

  Actually, in studies of physician career satisfaction,23 geriatricians come out on top. There are many reasons why doctors who specialize in the care of old patients are overall happier and more fulfilled. If you choose to do something that falls at the low end of the spectrum of prestige, power, respect, and income in a profession where all four are possible, chances are you are doing it for the reasons that give life meaning: it interests and inspires you, you believe in it, and it gives you pleasure. In other words, you are doing it for love.

  People’s reactions to my job choice (even to the word geriatrics) speak to our societal values. Medicine, calling itself a science while making choices based on those same values, almost universally prioritizes what is fixable and “worth fixing” over what is viewed as neither.

  Many of the best geriatrics innovations—palliative care, transitions (home to hospital to nursing home, and all variations thereof), multimorbidity, home care, elder-friendly hospitals24—have become part of general medical culture. To achieve that status, most have been divorced from their geriatrics origins. Not associating them with old age increases their appeal. Sometimes this is because they are useful to many types of patients; other times, the shift panders to ageism. But perhaps things are beginning to change. A recent article invoked Sheryl Sandberg’s Lean In, advocating to move the conversation from what geriatricians (and old people) are not to what they are.25 This struck me not only as good marketing but the basis for every civil rights campaign that shifts focus from what certain people can’t do to what they are already doing and all they could if they were allowed to.