Elderhood

by Louise Aronson

  These figures suggest modern medicine is an anti-intellectual profession: those whose work is based on interaction and negotiation and analysis, on looking at the big picture, and on deciphering the cognitive puzzles presented by patients with particular bodies and lives, social circumstances and complaints, symptoms and health insurance-related options, are paid significantly less than those whose patients are absent or who can focus on one part of the body and ignore everything else.

  One could argue that our health system’s perverse priorities are a natural outgrowth of medical history. The interview and physical exam have been around for millennia. Many of the greatest innovations of the last century involved technology and procedures, and, as is the case for most new things, the newer skills were seen as sexier and priced at a higher level.

  But this, too, is true: when studies examine differences between men and women, they find that men more often value the left-brain skills associated with technology and procedures and women the right-brain ones associated with communication skills and relationship building. But here, as most everywhere, culture interacts with biology. When women first became doctors, they were strongly encouraged to go into psychiatry and pediatrics. Now they are going into surgery21 and radiology and emergency medicine in large numbers, and reports from the field suggest their patients have the same—or better—outcomes. And still, look at a list of the highest-paid medical specialties, and you find that all but dermatology are left-brain specialties where men predominate. On the list of the lowest-paid specialties you find the specialties are more relational, cognitive, and right-brain, the specialties where women are in the majority.

  A randomized controlled trial published in 2016 sent identical applications for a lab manager position to science faculty, half with a man’s name, half with a woman’s.22 The male applicant was rated as more competent and hirable and offered a higher salary by both male and female science faculty. We are all part of the same culture and we are all biased, even when we think we’re not, even when we try not to be, and certainly when we think talking about bias is a form of bias against those who routinely benefit from our most entrenched and beloved biases.

  People who earn more money have more money, as do companies that make a fortune off drugs and devices and technologies. And people with more money have more power and greater capacity to lobby for their self-interest. Radiologists, who fall to the top of the specialty pay heap, lobby hard for mammograms in age groups where they have been shown to do more harm than good and in situations where other technologies and approaches appear more effective. More mammograms mean more money for them. Pediatricians, by contrast, do not lobby for themselves but for kids to have better schools and food and opportunities. And so they remain, decade after decade, in the bottom rungs of the pay scale; after all, children don’t vote or have power, and taking care of children is women’s work and so worth little on the marketplace.

  Rarely in salary discussions do doctors or fee-setting committees mention the needs of the populace. In fact, it’s only recently that people in medicine have begun to consider what is now called “Population Health.” In many ways, a focus on social needs is un-American. In a culture where self-determination is paramount, individual doctors are entitled to go into radiology and orthopedics and dermatology and anesthesia rather than into primary care (where they are desperately needed, where care more efficiently and effectively prevents disease and decreases costs). But they don’t make those decisions in a vacuum.

  Like many humans, many medical students gravitate toward respect, prestige, money, and power. They see who counts in the culture of medicine and in our larger society, and (surprise!) they feel far more competent in the hospital-based, interventional, organ- and disease-specific specialties where they do most of their training. Also, at most medical schools, the vast majority of students incur vast amounts of debt. They graduate owing hundreds of thousands of dollars, a figure that has grown dramatically over the last two decades. Lucrative specialties make debt repayment easier at a time of life when people want to buy homes and start families. Students from traditionally underrepresented backgrounds are more likely to need financial aid and graduate with greater debt loads. Unlike their peers, however, those students are more likely to work in poorer neighborhoods trying to help those who need it most.

  In our current system, then, we provide incentives to enter fields without shortages and disincentives to enter those where our national need is greatest. And in a profound rebuttal to arguments for background-blind admissions policies, the people from traditionally underrepresented groups, whose backgrounds often mean they take the greatest risks and incur the greatest debt burdens, are the ones most likely to do the right thing for Population Health. They improve our society, and we punish them for it.

  COMPLEXITY

  Laila Said lived in her daughter’s house on a sloped street midway between a public housing complex and a quickly gentrifying shopping area. On my first housecall, a caregiver showed me into the bright front room, where a pack of small terriers and spaniels encircled my feet and doctor bag, sniffing with enthusiastic curiosity. Ten years after being diagnosed with dementia, Laila sat primly on her couch. When I said hello, she glanced at me, then looked away. I explained who I was and told her I needed to ask her some questions. She stared out the window. Over the next hour, she never smiled or offered more than one-word replies. Fortunately, her daughter had left notes, I had recent hospital records—lots of them—and when it became clear Laila couldn’t or wouldn’t answer my questions, the caregiver led me into the kitchen to show me her charge’s medications. Shutting the door behind her, she said her job was very difficult. Laila could be really mean. The caregiver pulled up a shirtsleeve to show me fingernail scratches on her arm. “Be careful,” she said.

  When I returned to the living room, Laila hadn’t moved. She had perfect posture in her tiny, emaciated body and the same hard-sad-vague expression on her face. I wanted to do a physical exam, but not without giving her warning. I held my stethoscope where I knew she could see it, trying to communicate to her that my stranger’s touch meant help, not harm. The instant I placed my hand on her shoulder, her primal screeching began.

  This is what many people dread most—for their future selves, for their families. For anyone. Even for doctors and nurses who experience it regularly and must do things that worsen the distress of the dementia patient they are trying to help. The situation can be made morally tolerable when the patient can still express their wishes for treatment or has provided clear guidance to a legally designated proxy decision-maker, and when the treatment is clearly helpful, resulting in the patient feeling better and returning to a more familiar environment. All too often, none of these mitigating factors exist. Afraid of old age, incapacity, and death, people don’t designate a proxy23 and discuss with that person what they value most and want to avoid, a reality that drastically reduces their chances of receiving the care they want later. Absent any direction, the default position of the American health care54 system is to “do everything.” More often than not, this approach does not actually include “everything,”24 since it so rarely includes essential conversations about a person’s future, care designed to minimize distress and maximize comfort, information about likely life expectancy, and options for treatment in a familiar environment. Each of those approaches is well studied, proven effective and cost-effective, preferred by many patients and families, and generally not provided in today’s technology-obsessed and profit-driven health systems.

  When Laila began screeching, the dogs fled the room and the caregiver and I stood back. Then I made a show of putting down my stethoscope and began speaking in what I hoped was a soothing, matter-of-fact tone. That didn’t help. As I was debating what to do next, the screeching stopped as suddenly as it had begun. Laila was again perched on the couch with her hard-sad-vague expression.

  Dementia doesn’t invariably make people angry, sad, aggressive, or unreachable, bu
t it makes many people those things on occasion in the disease’s long course, and it makes some people one or more of those things for years. Sometimes the issue is the disease itself, early-stage grief of what will be lost to Alzheimer’s, anger at what’s been taken by a stroke in vascular dementia, frustration of fluctuating alertness, confusion, hallucinations, and physical control in Lewy body dementia, or the personality changes of frontotemporal dementia.

  Other times, the triggers are situational. Imagine your reaction if a stranger started taking off your clothes. If you felt cold but couldn’t find or ask for a sweater, or you had to pee but couldn’t undo your clothes or were in a new place and couldn’t find the bathroom. And what if you looked in the mirror and didn’t recognize yourself, or sat in your home minding your own business when a stranger appeared claiming to be a doctor, asking you questions you couldn’t answer, then wanting to touch intimate parts of your body?

  In Laila’s case, it was also possible stethoscopes and doctors signaled pain, confusion, and further loss of control to her. Before we took her into our housecalls practice, she had been back and forth from hospitals. Because of her diabetes and dementia, she had little sensation in her feet and usually forgot her walker. She frequently fell and developed infections or acted out in ways her family didn’t know how to handle. For each problem, they called 911, and the paramedics arrived to find an ill or upset old woman with multiple serious medical problems. It was a no-brainer for them to take her to a hospital and a no-brainer for hospitals to admit her. She was old and sick. Wasn’t the hospital where she needed to be?

  After the housecalls began, her family started calling us first. In person or by phone, we helped them care for her without the added trauma of a hospital, with its chaos of strangers, unfamiliar rooms, bodily assaults, and invasions. We didn’t cure Laila’s dementia or other problems, but gradually figured out the interpersonal and medical reasons for her screaming. By tackling those problems with family education and medication and by working with our center’s exceptional home health nurses, we improved her quality of life, as well as the lives of those around her. There was less screaming (by everyone), and they all felt less anxious, spent more pleasant time together, and slept better.

  Because we cared for Laila in the early 2010s, we were not paid for the phone portion of the time spent doing this cost-saving, life-enhancing work. If you think of billing as a barometer of what matters in medicine, this becomes information relevant to most people. It was not until 2015 that our health system created care coordination billing codes and recognized patients and caregivers as part of the health care team. And there remains a second, equally important way that care of patients like Laila shows up critical blind spots in our health care system. Although Laila’s home care saved tens to hundreds of thousands of health care dollars, it did so in a way that still doesn’t appear on federal or local medical center ledgers.

  Success for most hospitals is primarily measured by how full they are: how many bodies fill how many beds. This, despite our national focus on cost cutting in our high-price, low-value health care system, and federal penalties on hospitals for readmissions since the enactment of the 2012 Hospital Readmissions Reduction Program. Indeed, since that program covers just six common conditions (heart attacks, heart failure, pneumonia, chronic lung disease, hip and knee replacements, and coronary artery bypass graft surgery), there is little incentive for medical centers to strive for true, universal quality care by anticipating and solving problems before they reach the crisis proportions that warrant hospitalization. Good health is bad for business.

  For several years until Laila’s death, our home health team, my colleagues, and I rushed to her house as needed: to diagnose and treat pneumonia, an intestinal bleed, multiple episodes of worsened confusion, and, finally, a stroke. We talked her daughter and son-in-law through late-night crises and collaborated with home health nurses and social workers to help provide Laila the care she needed at home. It was still hard on everyone, and it was also much better.

  Around this same time, our medical center moved to an accountable care organization approach—one linking organizations and providers across care sites to (in theory) provide collaborative, coordinated care for patients or populations. This didn’t mean the hospital recognized the savings from keeping Laila out of the hospital, however. The inpatient and outpatient parts of health care still aren’t connected in most systems. But the medical center did start supporting our housecalls program, eventually providing a social worker, nurse coordinator, and administrative help. For almost twenty years before that, “Care at Home” had been viable only by virtue of grateful patient and family donations.

  Those giant institutional leaps forward explain our confusion when our medical center decided to shutter its home health program—a unit of nurses, physical and occupational therapists, social workers, and dietitians who provided care to patients temporarily homebound while recovering from hospitalization, illness, or surgery, or permanently homebound because of serious physical or mental disease. Home health care helps people leave the hospital sooner than they once did, continuing their care and serving as eyes and ears for physicians and nurse practitioners. The reason for the closure was the same as for many other academic medical centers: they were losing money. In a fragmented system, it’s easier to close a program providing essential patient services than to recognize its uncounted gains and fight to restructure the system so they count.

  Two of my colleagues, among the best and most passionate geriatricians I know, got wind of the potential closure a few weeks before it happened. They sent detailed letters to the administration that explained why home health agencies, just like medical centers (ours is rightly proud of itself), are not created equal. We all worked there for a reason: to provide the best, most up-to-date care in a system that neither rewarded (as fee-for-service does) nor penalized (as managed care sometimes does) clinicians for doing what was right for patients. One letter explained why we needed our own agency, how it differed from others in our city and region, and how its approach helped bridge the chasms of our divided health care system for patients of all ages with the greatest needs. The letter also says a lot about its physician-author. He’s the sort of doctor who, when one of his patients dies, writes the story of their life and death and sends it to everyone who cared for that person as an inpatient or outpatient over the years. Residents and students describe him with awe. I wasn’t surprise that he stayed late after a long day of work to write a polite, detailed letter on his patients’ behalf, but since he’s that very best version of a doctor-employee a medical center is likely to encounter, our institution’s nonresponse did surprise me.

  Of course, the second letter came from a similarly stalwart character. Among her many points:

  I have been told that [home health] accrued a … deficit in its last operating year. I may be wrong, but I would be interested in knowing what was assessed as the “ins” and “outs”—because knowing how hard it is to find analyst time and assignments to help evaluate program outcomes … I would want to be sure that consideration is given to the downstream savings [home health] can provide a health system (which I suspect was not factored into the $ … loss) and not just costs of running the program vs insurance reimbursements. I certainly agree that there is room to improve the operations …

  … there are MANY programs and areas of [our institution’s] operations that “cost” money but are supported with the focused intention of supporting patients and their outpatient clinicians, and reducing avoidable downstream high-cost health systems utilization. [Home health] is no different …

  A creative thinker, she offered four synergistic, system-savvy approaches to cutting costs and increasing efficiency without losing the unique services offered by our home health agency.

  The person at the top of the institutional food chain to whom these letters were addressed did not respond. One of his henchmen thanked my two colleagues for their thoughtful comments,
acknowledged the difficult situation, and assured them that the powers were looking at all options with our complex, older patients in mind. The next month, the medical center’s CEO sent an e-mail to all staff announcing the closure.

  No community discussion. No recalculation using all relevant metrics. No evidence of “other options.”

  The e-mail noted the financial challenges and the many other local home care programs. It argued—contradicting evidence, patient stories, and testimonies of my colleagues and the nurses who protested outside the hospital a few weeks later—that because our patients still had access to home care, they were not being deprived of essential services.

  The announcement came as a done deal. To most of us, it felt like yet another nontransparent, noncollaborative, top-down decision inflicting harm on both patients and clinicians. They appeared to be checking boxes rather than ensuring optimal care. It felt as if they didn’t care about either their hardworking primary care clinicians or the largely voiceless patients the home health program served. It’s hard to work as well as you might at a medical center and in a health system where decisions are based on flawed evidence and partial data, where certain types of care and patients and clinicians are favored over others, and where leadership makes decisions that harm patients from behind closed doors, actual and digital.